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Flying With Broken Wings: Difficult Diagnoses, Dimwit Doctors and Tricky Treatment
One of the most popular topics on the Dear Thyroid message boards seems to be the struggle to get proper diagnosis and treatment. In my case, I had struggled with weight gain and tiredness for years before cottoning on to the fact that it might be my thyroid thanks to my mother finally letting me in on our “nasty family secret”. The sad thing is that before I got diagnosed I had seen several doctors who had felt it their duty to make evil and hurtful comments about my weight without however suggesting that they test my thyroid. Unfortunately, it still seems to be the general consensus that overweight is caused by laziness and overeating. I had given up on ever losing the weight because no amount of walking (and I walked an hour a day when we first moved to Düsseldorf and even bought a pedometer) or dieting seemed to shift it.
I was lucky when I went to my last doctor, requesting a thyroid test because “it runs in my family and I am suffering from fatigue and weight problems”. My TSH was 4.78, which she and the lab classed as underactive, but apparently only just. What disgusted me is that when I told my gynecologist Dr. Elke Reiners (usually I don’t mention names, but I think this lady deserves a special mention!) I had been diagnosed with Hashimoto’s, she felt the need to make a comment in German which basically translated to “you are not exactly slim” – duh. Thanks for pointing out something that people have been pointing out for almost my entire adult life and extra points for mentioning this when I have specifically explained that I have a metabolic disorder.
Because of her unpleasant and insensitive attitude and lack of knowledge on how PCOS (which I also have) is in fact connected to thyroid disease (it seems many, if not most, gynecologists fail to realize this), this delightful lady is now my ex gynecologist. Now I am with Dr. Heilper who can be gruff and tactless, but who gives me the impression that he does truly care about me as a person and would like to make me better. I don’t think you could say that about most doctors, although if a person chooses this particular profession, I’d like to think it is because they care about people’s wellbeing. Sadly, this sometimes appears to be a misnomer.
I was put on the one-size-fits-all Levothyroxine T4-only drug by my last doctor and told to “come back in three months”. Unfortunately, whilst the added T4 made me feel awesome at the start, after a month my old problems rapidly returned and once again I was sleeping during the day and finding it hard to get out of bed. I brought this up to my doctor twice and both times she fobbed me off as someone who was “emotionally exhausted”. Admittedly, I had good reason to be so, because just before my diagnosis my future mother-in-law had passed away and I had been involved in organizing the funeral arrangements. However, I know my body better than any doctor because I am the one who has had to live in it for years and I felt that emotional exhaustion was not the cause – I know how this feels and this wasn’t it. If anything, this experience has taught me to trust my instincts about my health more than ever. Every time, I was frustrated about trying to bring this up to my doctor in an effort to get her to increase my dosage or switch my medication to one that worked better for me.
I ended up changing to our current doctor, but had not gone to him from the outset because I had heard of his horrendous waiting times even when you have an appointment and had been hoping that my former doctor would be able to “sort out my thyroid”. She diagnosed me, but that was about all she did and if I had stayed with her, I would still be on the same T4-only too low a dosage med that simply wasn’t doing it for me – she was happy at a TSH of 1.8, but my thyroid was not. For some people, the TSH has to be more suppressed before their symptoms begin to be alleviated – my TSH is currently 0.3. Now I’m on a synthetic T3/T4 drug named Novothyral plus some extra T4. I would love to try natural desiccated thyroid (NDT), but it’s not even approved here, so that may have to wait until we move to the US, which will be in the next few years. However, it is possible to get it from other European countries, which I am currently looking into.
Of course, I’m not the only person who has struggled to get diagnosis and treatment and, in fact, I consider myself very lucky that I have only had to go to two doctors so far. That said, my current doc tells me he suspects my thyroid has been underactive for 10 – 15 years. Back in April 2006, I even went to an endocrinologist for my PCOS. This year, I was looking back through my papers and saw that he had measured a TSH of 1.21. As the weight gain had started long before then, it’s a safe bet that I already had Hashimoto’s (autoimmune underactive thyroid) at the time, but because my TSH was too damn low, one of the doctor’s assistants once again made a nasty remark about my weight and I was left undiagnosed.
Many people have “normal” blood levels, but an underactive/overactive thyroid. This is known as seronegative hypothyroidism/hyperthyroidism. Because too many doctors stubbornly rely on the TSH as the “golden measurement”, every year many cases of thyroid disease are left undiagnosed or undertreated. The other problem is that doctors still haven’t agreed on a “healthy TSH range”. Many experts are now suggesting that the TSH of a euthyroid (properly functioning thyroid) person should not exceed 2.5. My own fiancé also got caught in the TSH trap. The more I read about thyroid disease, the more I recognized symptoms in Corey such as tiredness, irritability and (much like myself) his penchant for being slightly overweight. I took him to our former doctor to get his thyroid tested. She did an ultrasound and recognized nothing. She tested his TSH (Thyroid Stimulating Hormone) and it was around 1.8, so technically “euthyroid”.
But here’s the catch: because the TSH is a pituitary hormone, it does not show the levels of active thyroid hormones in our body. It is merely the hormone that stimulates our thyroid to produce thyroid hormones. That is why it is so very vital for doctors to also test your free T3 and your free T4 levels. These are the levels of unbound thyroid hormones circulating in your blood and it’s vital to have sufficient amounts of both in order to feel good. There are other thyroid hormones (T0, T1 and T2), but T3 and T4 are the most important ones. The other stumbling block many people come across is their doctor’s unwillingness to prescribe T3. Whilst a healthily functioning thyroid should have no problem converting T4 into T3, people with thyroid disease do not have a healthy thyroid and so the chances are that you may have some conversion problems. Either way, supplementary T3 does seem to give many people that extra boost that they need.
Thyrella L lives in the UK and, despite her doctors repeatedly writing in block capitals on the test slip that they want BOTH free T3 and free T4 tested (L wants to check her T4 to T3 conversion, because if her free T3 is too low, she may well need supplementary T3), the lab techs tend to do their own sweet thing: “Where I live, the labs seems to be the new docs and they decide if they do a free T3 test or not.” When L called the lab to ask why they had once again failed to test her free T3, they replied that as long as her free T4 and TSH are in range, they consider this unnecessary. Currently, L has even resorted to paying out of pocket to get private labs to test her free T3. Other important tests include thyroid antibodies, which indicate autoimmune thyroid disease, but these are not always active, so that can also be a bit hit and miss in terms of diagnoses if your blood is taken when your antibodies are currently inactive.
Allow me to return to Corey’s case. His TSH was normal. Our former doctor never tested his free T3 and free T4, claiming this was unnecessary. It was at this point, which also coincided with her claims that my thyroid was now fine (TSH of 1.8 = fabulous!), that I decided to bite the bullet and switch doctors even if it meant waiting for hours. This is often the case for some of our appointments, but our doctor couldn’t be more thorough. I was the first one to go and see him and he switched me from T4-only to my T3/T4 combo drug that I am currently taking. I took Corey with me for moral support, but secretly also because I was hoping that the doctor would recognize some signs of thyroid disease and suggest he get tested again. I did not buy it for one minute that everything was fine with Corey. I had this niggling feeling that he too had a thyroid problem and it turns out I was right. The doctor did suggest he get tested and performed an ultrasound, but apparently he is much better at reading them than our former doctor, as he saw severe problems in Corey’s thyroid, which was totally oversized and which he said had been sick for even longer than mine, despite Corey’s normal TSH!
This one harmless-looking gland is known to wreak havoc throughout your entire body, so all these doctors who are unable to or refuse to diagnose or properly treat patients are truly putting their lives at risk! As Thyrella B explains: “I had to switch doctors to get diagnosed … first doc said my TSH was fine, but I didn’t think a lump in the neck was normal … my second doc ordered an ultrasound and found the nodule. What would have happened if I had not gone to another doctor????? How long would my cancer have had to grow????”
There’s hardly a person I have talked to who has not experienced some kind of hiccup, or a whole bout of them, on the road to recovery from thyroid disease. A German friend of mine told me how she experienced problems such as hair loss and weight fluctuations and other symptoms that were clearly indicative of thyroid disease. If I remember rightly, her thyroid even looked abnormal on the ultrasound, but so far her visits to multiple doctors have proven fruitless as she has been refused treatment because her goddamn blood levels are “nice and normal!”
Thyrella L hated going to the doctor unless it was absolutely necessary (much like myself in my life pre-Hashimoto’s). She suffers from multiple autoimmune diseases, starting with endometriosis in her teens plus Thyroid Eye Disease (TED – and not in the cuddly teddy bear sense) and Graves’ disease (autoimmune overactive thyroid). L started feeling unwell back in 2003, but it wasn’t until 2005 that she approached her doctor about her symptoms of weight loss, tiredness and terrible perspiration. He increased her hormone replacement therapy and on other occasions dismissed her symptoms as a virus. “He never considered taking a simple blood test to determine any of my symptoms,” angrily exclaims L. She gave up approaching him for help, but eventually her symptoms become more noticeable, particularly in the form of bulging, asymmetrical, gritty, light-sensitive eyes with blurred vision. Unwilling to return to her GP who had let her down so badly, L went to her optometrist who immediately recognized her symptoms as TED, performed the necessary tests and sent L back to see her GP, with a letter saying she suspected Graves’ Ophthalmology (TED) and a request to test L’s thyroid function. He did and the results were conclusively hyperthyroid, but he just wanted to repeat the blood test!
L’s GP wanted to refer her to an endocrinologist, but there was quite a waiting time – long enough for L to end up in hospital due to thyroid storm, a life-threatening condition where the heart rate, blood pressure and body temperature can become uncontrollably high. After her hospital trip, L was prescribed anti-thyroid meds and given an even sooner appointment to see an endo who wasn’t much better than her GP and turned her hyperthyroidism into hypothyroidism: “I crawled out of that and really started advocating for myself. I promised myself I would never again let anyone make me feel so ill because they didn’t know what they were doing.”
L’s levels jump “up and down like a yo-yo”. Like many UK patients, she is currently struggling to get her new endo to prescribe a T3 hormone replacement: “I see him again this month and it’s his last chance to read my labs correctly. I have done it his way. Now it’s my way or no way at all because that is just how I feel. I put my trust in the medical profession and all they do is let me down, don’t listen to the patient or go by symptoms. I will continue to advocate and fight for what I should be getting, but each time it gets that little bit harder, but I won’t give in.” I find L’s words of determination very inspiring and I love her “my way or the highway” attitude because it is our health and so we have to take charge of it, whilst searching for a doctor who is prepared to treat us as an equal partner. Sadly, according to L, “finding a good doc in the UK is like finding a needle in a haystack.”
Because of my own research on behalf of my hypothyroid mother, I have found that many patients in the UK end up having to resort to private doctors, which the insurance doesn’t generally cover, because sometimes such doctors – the most notable being Dr. Barry Durrant-Peatfield – are the only ones who are prepared to do the full testing, listen to patients’ symptoms rather than stubbornly abiding by their blood levels (often using outdated ranges) and prescribe supplementary T3 hormone as needed, generally in the form of Armour Thyroid, which the NHS (National Health Service) seems to be less than fond of as it is more expensive than the standard Synthroid treatment. Sadly, a group of the UK’s senior endocrinologists has felt threatened by such private practitioners as Dr. Barry Durrant-Peatfield and Dr. Gordon Skinner, criticizing their “alternative treatment methods” (like those described above – oh, yes, very alternative indeed!) and various witch hunts have ensued. For UK patients the Thyroid Patient Advocacy UK site may come in handy, especially if you want to find out more about such “alternative” practitioners.
Thyrella M is also based in the UK. Diagnosed in 1978 with Graves’ disease, M was prescribed the anti-thyroid drug Carbimazole for 10 years until her endocrinologist died. “A new doctor took over and decided in his wisdom to ‘try and kill off’ the gland by prescribing me both Carbimazole and thyroxine (T4) at the same time. Instead of doing that, it sent the gland haywire, I put on four stone (56 pounds) and in the end had to have a partial thyroidectomy in June 1990 … I’ve been on thyroxine ever since and I don’t think my thyroid will ever really be stable.” M is currently struggling to get a referral to a specialist at the hospital. It seems getting a referral in the UK is really not that simple. Here in Germany, I can just ask my doctor for a referral and I am generally given one. I have also heard of the hoops some patients in the US have to jump through in their quests to get referred to someone more specialized.
M is also very concerned about the symptoms her daughter W is manifesting such as bloating, weight gain and lack of energy. W is just in her mid-20s, but M believes she is already suffering from thyroid disease. Previously, when M brought this up with the doctors, she was classed as a fussy mother, although W’s levels (which are tested annually) clearly suggest she does have a thyroid problem: “I know last year the results showed she was underactive as her TSH was 3.4 and her free T4 was much lower than mine too, but still classed as normal according to the guidelines! In a way, I am secretly hoping the TSH is much higher and the T4 is lower, which then might make the doctors realize that I am right and they are wrong and refer her to the hospital!” (this tends to be where UK patients go if they want to see a specialist)
Thyrella P also struggled to get diagnosed. It took her GP five years to “get her finger out” and order a thyroid blood panel despite annual physicals! P believes that thyroid levels should be routine tests. P was told her levels were “only slightly overactive” and accidentally prescribed Synthroid, which might help a hypothyroid patient, but P was hyperthyroid! P has been on the right meds for two and a half years, but continues to suffer and has been on disability for the last two years due to symptoms such as insomnia, anxiety, fatigue, muscle pain, palpitations and breathing problems. P also has Thyroid Eye Disease. “The medical community thinks that since my levels are normal, I should be asymptomatic, but that is far from the case. I have struggled to find any eye doctors who believe my vision issues are attributed to thyroid disease. My endo is the only medical professional who has been supportive and understanding of my symptoms.” P has the following advice: “All I can say is do your research and insist on the care that you so rightly deserve.” P’s advice is sound. We struggle everyday with the symptoms of this disease, with ignorant doctors such as those described in this article and with outdated test ranges, but I know from my own experiences and from others’ stories that there are good doctors out there. Feel free to add your doctor to the Dear Thyroid recommended forum list of doctors or refer to this list to get a recommendation. Mary Shomon’s Top Doctors Directory is also an excellent resource. Never give up and never give in.
All my love,
Sarah
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60 Responses to “Flying With Broken Wings: Difficult Diagnoses, Dimwit Doctors and Tricky Treatment”
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After years of misdiagnosis and stupid comments from doctors, I began researching and treating myself. Depression sysmptoms were treated with antidepressants, which never worked. I asked my doctor how to lose weight, he told me to “stop eating.” Doh, you think there’s any nutrition there? My lab tests were in the normal range right up until my goiter was so large I could no longer breathe or swallow. After “treatment” consisting of left hemi-thyroidectomy, and Synthroid supplements, I continued to gain weight and feel horrible. The heart symptoms were ignored, instead I was given generic version of Toprol which sent me into heart block. After chucking all meds in the toilet, I noticed I felt suprisingly better. I may need a Thyroid supplement, but I don’t need idiot docs. My recent, current regimen is vegetarian, organic, no soy, no goitrogens, and exercise. I feel better. Blood pressure is now in normal ranges. I’m still fatigued but I will beat this.
I wish with all my heart that some day in the near future our struggle will be rewarded with recovery! I would estimate I have been to 45 to 50 doctors in my life trying to find health others take for granted. There are some people in this world who may be lazy, drug seekers, or some of the other awful assumptions made about those in chronic pain and pour health. It is a cruel assumption and is barbaric. The support that is found here is often the only support available to some who join or participate. Every story touches my heart and yet makes me feel less like a freak, or a hopeless case. Thank you all for sharing your stories and thoughts, they really mean the world to me. Sarah thank you for finding a way to bring the stories to life and giving great suggestions to make changes that could help us feel more in control of our futures.
Vicki, thanks for your comments. I am sorry to hear that you had to suffer with all this crap for so long, but very encouraged by the fact you turned this round and decided to take charge of your own health. It’s great that you feel better – sorry about the fatigue, but it certainly sounds like you are on the right track to banishing that too. I hope you have found a new doctor to replace your old one who either didn’t know or didn’t care. Good luck!
Heide, I do so hope that our struggle ends some day soon. I know how long your struggle has been and I know how I always tell you not to give up, which is hard admittedly when I sometimes feel like giving up myself. Thanks, Heide. I am happy and priviledged to share the stories that my wonderful thyroid friends share with me. Suggestions are definitely important too! I just worry sometimes that the column is a bit long – it is hard to keep the word count down when you have so many wonderful accounts to include. Factual columns are much easier to keep short. I always sit down, thinking that I’ll be struggling for information to include, but that never seems to be the case.
Excellenet write-up Sarah! What painful and outrageous horror stories!
Your article raised a question for me. How does the body without a thyroid gland convert Levothyroxine (T4) into usable T3? Need to look into that a bit.
My endo agreed to get me an adrenal gland blood panel, since I am still so darn fatigued and lethargic, even though my TSH, FT3 (=Free T3) and FT4 are OK (even considering the newer tighter lab range recommendations).
I also had my ferritin and iron, Vit D, Vit B12 checked, and I am taking supplements daily, but am still so tired.
I had my thyroidectomy in early March of 2007, now we are writing the year 2010, one should think that 3+ years is enough time to get you up to a tolerable thyroid hormone level; but – alas – it is not so.
HD in Oregon
Thanks so much for your kind remarks, HD. They were painful and outrageous horror stories and, sadly, all too common. Frankly, I feel like Corey and I got off rather lightly.
That is a very good question. Can a body without a thyroid gland even convert T3. There are lots of factors that prevent conversion (in fact, just before doing this I was reading up on it in one of Mary Shomon’s books). As far as I know, there are other organs such as liver and kidneys (I believe) that are also responsible for conversion. I’m going to read up on this and get back to you. Do you actually take extra T3? As for the adrenals, I know Dr. Teitelbaum does some very good supplements – Lori knows quite a bit about these, but he also has a website: https://secure.endfatigue.com/store/products/supplements/. I also just found this link, which looks like it could be promising: http://findarticles.com/p/articles/mi_m0FSS/is_5_11/ai_n18614288/. Either way, I will read up on it and get back to you if I find out more. Dr. Teitelbaum also offers an energy complex, which I believe Lori has also had some success with. Another question: are you getting the sleep you need? For some people, it may help to take some kind of sleep aid to ensure you sleep deeply and don’t end up tired. I believe melatonin is quite popular.
So sorry you are still going through this crap after three years! Which thyroid hormones are you taking?
Cheers,
Sarah
It was a freak sign that led me to the doctor I now have, who is helping me explore my thyroid issues. I woke up early in January with a spontaneous black eye. I saw myself in the mirror first thing in the morning and thought “What the hell?!” I didn’t remember getting socked by my other half during the night. I don’t sleep well, so I think I’d remember that. It kept getting worse over the course of the day and I had pressure in my eye that felt like someone was pulling on my eyeball. A few months prior to this, I had a very bad experience with an endocringologist who dismissed me with “You’re just fat and you need to sleep!”. That entire appointment was so traumatic for me, that I decided on the spot that I was never going to the doctor’s again. I would just treat myself with vitamins or natural means. Well, the eye business scared me, so I called the doctor. He took a look at me, and within hours I was seeing an opthamologist and was sent for CT scans and an MRI. They discovered a hematoma behind my eye, but could not figure out why. The eye problem did resolve, and after a few visits to follow up, with this particular doctor, I asked him if he would explore my thyroid issues with me. He stated “If it is important to you, it’s important to me”, and that began our relationship. He has since taken me on full time as a patient, and we learned together that Levothyroxine can be used as an anticoagulant. That combined with ibuprofen for my many headaches from not sleeping probably caused the hematoma. I have embarked on a series of tests for sleep apnea, breathing issues, cholesterol.. you name it..Newly diagnosed with COPD that is not thyroid related,(they think it is lung damage sustained after a bad house fire last year), serious sleep apnea, and very high cholesterol, I feel that while I’m not in great shape physically, I’m getting some answers and I feel in charge. I eating gluten free now, and the headaches have resolved, as well as intestinal issues. I’m still exhausted, but we are working on that, and it will hopefully get better when I start on CPAP.
I guess the bottom line of all this, is don’t give up finding a doctor who will listen and be willing to explore health issues. My long journey into illness and turning the corner to travel now, the road to wellness is tiring, but I’m beginning to feel a little pep in my step. Maybe I can be well. Some days are harder than others to get on my feet and keep going, and there have been many times that I have put myself at the bottom of a mucky well..never to come out again, but I manage to start over.
Thanks for sharing all your story and information Sarah. It does help to hear it all, and know that we are not alone and that we do have hope.
Very good article, Sarah. I think you covered very important points for people to be aware of when advocating for themselves.
I, like you, have never had a problem getting referrals to any kind of doctor my doc or I thought would be helpful, the problem has always been none of them knowing a hill of beans about recognizing thyroid disease. They only checked the TSH, as usual. Many never even considered thyroid when I was looking for answers for neuropathy, RSD pain, degenerating joints, fibro pain, etc. The neuroendocrinologist thought my heart palps and forgetfulness were anxiety (even though I knew this was not the case) and of course the body pain, exhaustion, depression, falling asleep while driving and working were all related to fibromyalgia and narcolepsy. I saw many specialists from top Boston hospitals and the only doctor that checked any thyroid tests (I didn’t know it at the time) over and over again was my primary care. Unfortunately, she did not know any better either but in the end, she is the one who came through for me and ordered the NDT because she knew the T4 was not working for me, and she found the proactive doctor for me that I have now. It was the first time she had ever ordered NDT but if she hadn’t known me so well, she never would have ordered it because she knew nothing about that type of drug. She was afraid to go against what even the endocrinologists believed in.
She is witnessing the transformation first hand now, albeit slow, but I hope she will now be able to recognize other patients who are not doing well on their current treatment or symptoms with no known cause may be related to the thyroid. This is why we need to educate them, our primary care physicians and the specialists both.
Heide, you are so right about assumptions, they are cruel, very cruel. It’s bad enough we have to suffer for so long and this ignorance just adds salt to the wound.
Kathy, thank you so much for sharing your very interesting story. I particularly like the quote: “He stated ‘If it is important to you, it’s important to me’, and that began our relationship”, Isn’t that precisely the way it should be with a good doctor? I am sorry for your previous doctor’s insensitive comments. Some doctor’s appointments can indeed be traumatic. I am very glad and proud for you that you “are getting some answers and feeling in charge”. As I said in my article, we do to take that stance – it is our health and we need to ensure that it is taken seriously – not only us, but also by those who would like to treat us.
I have heard a lot of good stuff about CPAP by the way. My sister-in-law went on it years ago and actually lost weight. In fact, my fiancé Corey has just had his second surgery for sleep apnoea. We were so disappointed when the first one didn’t work – supposedly it wasn’t radical enough and they hadn’t taken away enough tissue! Thankfully – and about this I am really happy – this second surgery actually seems to have worked and I think his snoring has actually stopped and he also seems to be sleeping a lot better! Woot! He was against wearing the machine unless he really had no other alternative. This time they also shortened his uvula, which I am sure also made a difference – it was touching his tongue and making the vibrating snoring noise when he breathed out of his mouth while sleeping.
You are very right, Kathy – you are not alone, you do have hope and in fact it really does sound like you are well on your way to feeling better – continue on the right path and continued advocating for your own health – you won’t regret it! In fact, in my experience those patients who provide doctors with lists of their symptoms/personal medical history/family medical history are really helping them do their job and give them a more practical diagnosis. It saves them time making notes and makes sure they don’t forget anything. Of course, this generally works best with doctors who are open to working with patients – and all good doctors should be! – but both my doctor and my sister-in-law’s daughter were delighted when we brought these sheets in and my doctor always listens and is very pleased that I have researched so much about what is going on with my body. Take care and keep up the good work!
Lori – glad you liked my article. Thanks for your continued support:-). Thyroid disease is fricking complicated, so I try to include important info about tests, etc. whenever I can. There are still many patients who don’t seem to quite understand the role of the TSH. The situation in England is also interesting to me, particularly because of my mum – I try to gently push her in the right direction, but there is only so much I can do.
I am glad that you haven’t had the referral problem. It’s ludicrous. Here you are automatically referred to a radiologist when you are diagnosed with thyroid disease so that they can do a scintigram. From what I gather, ultrasounds and scintigrams are not as popular in the US and yet they are still pretty vital for diagnosis and to rule out thyroid cancer.
I am very proud and pleasantly surprised by your primary GP having the guts to order a drug she was unfamiliar with because it was so important to her to try and get you well! It is also awesome that she referred you to your current doctor. How is that going? “She was also afraid to go against what the endocrinologists believe in” – doesn’t this seem a rather common problem? For instance what I wrote in my article about the “alternative UK private practitioners”. It’s sad really that so many ignorant doctors poo-poo the idea of T3 instead of listening to the millions of patients it is helped. I hardly think millions of patients are just imagining this!
Assumptions are always horrible, but people who make them are ignorant anyway, so we need to tell ourselves that they are not worth listening to. Somebody who is open-minded and cares about you will not spurt out crap like some of the stuff Heide described.
Hugs, Sarah
HD-
A lot of T4 to T3 conversion occurs mainly in the liver, and in the GI tract. In those with a thyroid, the gland itself also makes a small amount of T3.
Therefore, if your liver or GI tract are not healthy, this could decrease your conversion.
All-
If when you were first being diagnosed, your doctor said to you: “Thyroid disease is difficult, many do well on levothyroxine, but many others don’t. To be safe, I suggest you completely change your lifestyle: cut out all gluten and dairy, remove all endocrine disruptors from your home, cut our all your favorite goitrogenic foods including all soy, and add in about 12 different supplements not covered by insurance.”
Hindsight being what it is, you say–I’ve made those changes and they work. But back then, you would have thought he was smoking crack.
I fully admit that I do not like being gluten free. I do it because I have to, and it was a HUGE lifestyle change for me AND my family. If a doctor had told me to do it, I would have been skeptical.
How do I know this? I discuss lifestyle changes (along with appropriate lab work and other treatments) for people and their pets EVERYDAY, until I am blue in the face. If 1 out of 10 follows my advice it’s a miracle. Sometimes the lifestyle changes I prescribe could add YEARS to a pet’s life, and yet, it’s very seldom done (and usually very low cost).
Human nature? Society? I don’t have an answer. But, it’s not all the doctor, I can guarantee it!
Oh, how I have great appreciation for this blog! I have been fighting with my body and my weight since about 2000. The doctor’s Always look at my weight and the fact that I have PTSD. They fail to remember that I also have PCOD and I am Still fighting to get a diagnoses. I’ve been to a sleep specialist and found out I have severe Sleep Apnea and RLS. Then sent to an ENT to try to figure out why I get so dizzy and nearly faint and have been losing my hearing…so he gave me a water pill and scopalamine patches. Then to the Endocrinologist who did More blood testing and said “they don’t see anything out of the normal range except the Fatigue and Inflammation and don’t know how to help me”. I’m more than frustrated at this point. Especially because even going on walks with my kids just plain Hurts and makes me want to cry all the time. I want it resolved so bad. But I’m on Disability which means I’m on State medical coverage as well, in WA state. How do I get anywhere with these doctors?
Sarah, my understanding is that it is standard practice in the state that I live in, to order an ultrasound when diagnosed with a thyroid disorder. It is more urgent when one has an enlarged thyroid, as I did, or thyroid nodules are felt. I don’t know about all states in the US though.
I’ve talked with my doctor about why the fear to go against the grain, and the fear is a lawsuit. Like I said, if she hadn’t known me so well she never would have gone that route, sadly. Just before I met with my new hormone doc I asked her to let me try Cytomel because I didn’t think I was doing well anymore on Nature-Throid (Armour was still unavailable) and I was surprised she had never ordered that either, but again, she did let me try it because she trusted my research I provided. My new doc is working out great. I’ve only seen her once so far but recently I started over again with a new brand and higher dose of medication (Amour), which she prescribed over the phone because of returning symptoms. I thought my symptoms were something else, as you know, but she didn’t even need another test or to see me, she knew they were thyroid. I’m just starting to feel like I’m getting back on track again but probably will need another dose increase at the next check.
Robyn, I have to respectfully disagree with you. I can absolutely state if those words were said to me (“If when you were first being diagnosed, your doctor said to you: “Thyroid disease is difficult, many do well on levothyroxine, but many others don’t. To be safe, I suggest you completely change your lifestyle: cut out all gluten and dairy, remove all endocrine disruptors from your home, cut our all your favorite goitrogenic foods including all soy, and add in about 12 different supplements not covered by insurance…) they would have been music to my ears.
When you go many years being misdiagnosed, not able to finish school, lose your job and income, quality time with your children, a quality life, being physically harmed by procedures and misdiagnoses, etc. I would not have barked one second at those recommendations. This is the short list of the consequences of not being diagnosed in a timely manner. One of the consequences I live with is nerve damage in both lower legs from being undiagnosed and we don’t know if these nerves will ever regenerate after this many years. The burning pain has improved a bit since the fluid has finally started to resolve but I was in a wheelchair and I cannot function without medication for the burning pain.
I think it’s obvious what you said hit a very emotional cord for me, but I DO understand how you came to your conclusion, it just doesn’t hold true for me and I’m sure many, many others. It is unknown exactly what causes RSD and one-third of people with polyneuropathy don’t know the cause. I went to a seminar given by a neurologist and if you could have seen the suffering in that one room you would know what I was talking about. Most of them were going through the same thing not knowing why they had it. I think of those people every single day and wonder if they have thyroid disease like me, and all the people’s lives turned upside down by the diagnosis of fibromyalgia. I fear for all the people with this diagnosis that will go years undiagnosed what’s really wrong.
I believe it is human nature to do whatever it takes to get your life back, which usually entails lifestyle modifications regardless of the illness.
I love this community and everyone in it. I’m so grateful for the opportunity to hear everyone’s experiences. I learn something everyday I didn’t know before, and I learn something about myself each time as well.
Lori,
I think you missed my point. Now that you have been misdiagnosed for years and are at the end of your string, you will do “whatever” it takes. I may not have communicated what I mean effectively, but I meant, early on, not down the road as you.
99%+ of people, with symptoms not as severe as yours (the more “average” hypothyroid symptoms–tired, hair loss, dry skin, etc), WILL NOT turn their life on its ear because a doc suggests it.
Studies show that loss to follow up (people who stop a regimen in a study) is between 5-21% for those including a drug or device. Loss to follow up in nutritional studies where people are to maintain a certain diet? A whopping 42-69%. (These are heart and diabetes nutrition research, not thyroid, but same idea).
Studies also show that the “worst health risk” groups targeted tend to under-estimate their health issues and are more likely to be non-compliant than the “moderate health risk” groups who over-estimate their health issue and are more likely to be compliant.
Robyn,
Thanks for replying to HD’s question, which I am going to get back to him in more detail anyway.
If you have read my columns, you will know that I constantly encourage people to advocate for themselves because that has been successful for me personally in my path to getting well. I never indicated that it’s always the doctor, but sadly it often is. The people who were kind enough to be interviewed obviously had some very horrific doctors experiences and I have had some too.
However, whilst certain lifestyle changes may help some people, I don’t believe that anybody should ever feel forced to make them if they don’t feel comfortable with them just because they have no other choice. I for one am not going to go gluten-free or dairy-free because I don’t want to and I don’t believe that those are the only answers. I have other strategies that work for me personally as an individual.
My lifestyle changes have been to go to a personal trainer twice a week, to constantly educate myself about my condition and to eat as healthily as possible. I have been getting better, but that’s more because I am lucky enough to have a good doctor who is doing his best to get my thyroid balanced. Pre-thyroid disease, I practically starved myself at times in an effort to get thin, so perhaps that is one of the reasons I am really not that keen on switching to gluten-free/dairy-free – I am sick and tired of being paranoid about every bite I put in my mouth (as it happens, I have already lost quite a bit of weight since my diagnosis). I would like to try Dr. Teitelbaum’s supplements at some point in the future, but they’re not available here.
I really believe that many of us here have made lifestyle changes already, but it has to be their own choice and something they feel comfortable with and not everybody feels comfortable with cutting whole groups of food out of their diet. Some people don’t even have the energy to eat or cook normally, so trying to cook special meals that only include certain food groups must be doubly stressful if you are one of these people. My sister-in-law is so exhausted due to her health condition that she finds it hard to get out of bed and make food. She eats a gluten-free diet (due to celiac disease), but fat lot of good it does her. Most days, my sister-in-law doesn’t eat much at all as there is so little she can eat without having a reaction – it’s hard to imagine if you are not in that position, but that is the way it is, so she would desperately love to be able to go off the gluten-free diet. For her personally, being on it really makes her suffer and she gets frustrated with the dietary limitations. We can only hope that she starts eating more once her new doctor that we found gets her energy levels up. She has what we suspect to be thyroid disease, is putting on weight and gluten-free is a necessity rather than a solution in her case. I’m delighted that it has worked for you, but I don’t believe that it is necessarily “the answer” for everyone.
Joanna, thanks – that means a lot to me:-). Sorry to hear about your struggles with your weight – I can certainly relate, as I am sure can many of us Thyrellas and Thyfellas. PCOS/PCOD sucks and having a diagnosis of this is a real double whammy. I actually wrote about the topic in one of my past columns. I am so sorry to hear about your doctors struggles. Do you have a doctor you like already? If not, the lists I provided might be a good starting point. If you have any questions or need any more tips, please feel free to email me. I’ll be happy to help if I can.
Lori, thanks for the info – I’m glad to hear that it is standard practice to do an ultrasound where you are. Our mutual friend H has never had one and neither has her hubby – we wish the doctor would just do one, but they are based in MS right now. I am thrilled to hear that things are going so much better for you with your new doctor and I also know that this is in part because you are so knowledgeable, do your research and are not afraid to try out different things. In fact, you are one of the most knowledgeable people I know when it comes to supplements, so when I get that stage of my journey (as I mentioned before, I want to cut down the meds I am taking before I add even more stuff to take) I may ask for your advice again. Please keep me posted, Lori!
Robyn, whilst tiredness, hair loss and dry skin may be the “more average symptoms”, they are still debiliating at times. Some people have neurodermatitis and other skin probelems as a result of hypothyroidism. These skin problems can be very unpleasant – just ask my sister who finds it too painful to even shave her legs at times or feels so ugly she doesn’t want to go out in public. As for tiredness, I know how that one feels when you are pressured to maintain a successful career that you have buit up for yourself over the course of 10 years, but are too damn tired to keep up with your freelance work or even really read a book. This was hell for me at the beginning of my diagnosis. But perhaps I misunderstood you and you are not insinuating that such symptoms are less serious, but more that they are easier to treat. I wish! My sister Helen has suffered from neurodermatitis her whole life and until I kicked my Epstein-Barr by taking 8(!) antivirals a day, thyroid meds weren’t enough to get rid of my tiredness either. Right now, I am doing what I can and what is manageable for me. Everybody needs to find their own individual regime that works for them and I do not presume to know what that is.
Sarah, thank you for that article.
I really appreciate how open you are about your symptoms and your struggle with your disease in every column.
It still amazes me how many doctors are ignorant towards their patients and don, ´t seem to connect the symptoms and try to find one disease to fit them all but instead of that neglect certain aspects (you are fat because you don, ´t exercise and tired because you are depressed).
I wonder how many more thyroid patients, who have been undiagnosed for years, it takes to make doctors realize that there might something wrong with the way they treat us.
They need to start listening to us, instead of ignoring our problems and make us feel like we are just fat and lazy.
Thanks for your comments, Christina. I have no problem sharing my symptoms – after all, I am not alone and I don’t feel like I have anything to be ashamed of. My sister-in-law has like 10 different diagnoses and it would make more sense if most of them are thyroid-related – she is finally seeing a good doctor and we are hoping that she will be the one to put the pieces together. We have to continue fighting and advocating for ourselves. As I said, there are good doctors out there, but sadly it often takes some time to find them.
Sarah, thank you for your great column and even better replies.
I’ve made many life style changes over the years and even before I was Dx with GD and GO, and still things are difficult for me HD and I had our surgery the same year the same month and looks like T4 is just not cutting it for either of us.
Things in the Uk are difficult enough but trying to get a doctor or endo to precribe T3 or even Armour I am not sure I want Armour because of the ratio and if they can’t read the labs now on just T4 replacement what chance have i Got with Armour with the combi at least I could take as little as my body requires and it certainly needs it. Maybe I wouldn’t need such high doese of Levothyroxine to get my FT3 up it even within range.
Like I said I see my endo this month and if he doesn’t agree to me trying cytomel then I think I am going to go on T4 (Levo strike) and stop my medication completly I know it’s going to make me ill I’m aware of all the consequences but I feel so strongly about this that if it means resorting to this then so be it then maybe someone will listen. 3 years of hyper and hypo has taken a toll on my body and I am sick of the yo yo effect.
There comes a point when you think well what more can I do I have done everyting within my power paying out for private labs for Free T3 I can’t afford to go private to see another doctor and even if I did chances are it would be with someone who won’t precribe cytomel either.
I will let you know how my appointment goes. This new Endo promised on our first visit that he would listen wanted to try upping my T4 dose I was hypo at the time anyway stayed there for sometime so increased my dose to alternating dose of 200 mcg and 175 mcg I have since had to reduce this because now I am hyper.
I get so frustrated, surely they can see that since my TT 3+ yrs ago I haven;t been stable I have been up and down like a punter in a whore house and I am sick and tired of it.
Sorry I wasn’t able to reply yesterday I couldn’t work on my D’s computer it was running like a snail I am home now.
I thank you for your columns, I use the TPAU and have found them invaluable.
Lolly
Hey Lolly, it frustrates and saddens me to hear what you are going through. Nobody should have to go through that and sometimes it seems that some doctors are callous and ignorant (from what you have told me, your doctors fall into that category). Have you ever considered going to one of the private practitioners or one of the docs mentioned on Mary Shomon’s site – it does however suck that you would have to pay for most of those out of pocket and of course not everybody has the money to do that. NHS truly seems to have done thyroid patients a huge disservice, which is why I wanted to touch on this in my article. After all, I am British too and as much as I like the UK and don’t always feel at home here in Germany, I truly appreciate that I am getting pretty good treatment here. The insurance system works differently here and I also have private insurance, so perhaps that is part of the reason. NHS is good in principle, but in practice it is lacking (mainly finances, I suppose). I am glad that you are able to relate to my columns. That makes me happy because that is my aim. What do you mean by TPAU?
When you say you are going to go off your T4: is your plan to go off your T4 shortly before your next doctor’s appointment and then get them to up your dosage because your TSH would have sky-rocketed? I understand your frustration, but I also worry about you making yourself sick and not being able to function. You are my friend, Lolly and I care about you.
so sad how all these people including you have struggled.. im still struggling with my doc.. but as you know i dont have much choice right now. Im hoping once we get back stateside it will be mush differnt. I also disagree with Robyn, I dont think that just changing your lifestyle and habits is enough. People just have some nerve!
Cynthia, I know how much you have done in your attempts to get well. I truly hope you get to see a US doc soon because I know your current doc is just not doing his job! It frustrates me that you should have to suffer. But at least you remain empowered and knowledgeable about the treatment you need even if you can’t get it just yet.
Well done Sarah for another great article. You certainly know how to tell us in words how we all feel. Not everyone will always agree with you, but the majority of us do, so keep up the good work and I certainly look forward to reading your articles every week.
Like Cynthia, I also disagree with Robyn. I personally don’t go along with that Robyn a change of diet will work for everyone. I don’t know old or how long Robyn has had the thyroid condition for, but myself being an older person and having the thyroid for more than half my life (over 30 years) I know exactly how my body responds. (Sarah has written about me in her article this week). Also age does come into the equation too. I know from myself, who is going through the menopause that your body is up and down and it affects your thyroid greatly. Your body changes as you get older and with your hormonal changes, your thyroid levels are affected too. I hope that being on a gluten free diet and change of lifestyle does help Robyn greatly, but it is not right for everyone. I have found that having an all round diet that includes some gluten is a good way for me. I find with myself that cutting down on portion sizes and eating healthily and cutting down on my fat content is a good way of keep my weight down which believe me is a life long battle!!! It doesn’t work for everyone, and yes, a gluten free diet will help some people control their weight and thyroid levels, but its up to the individual to decide for themselves. You learn to listen to your body.
My thyroid is up and down, especially down in the winter months and have to change my dose of Levothyroxine every few months, but I have learned to accept that is how my body is and try and rest on the bad days and take advantage of my energy levels on my good days.
I know I would benefit from T3, but in the UK that’s a near impossibility unless I go private, which I am considering when I am financially able to.
So, Sarah, l look forward to next week’s article!
Miriam, thank you for your kind comments and for sharing your own perspective and what works for you as an individual. I do so hope that you are able to get the treatment you need some time soon. Please keep me updated on how you are doing! I’m cheering you on!
Sarah, Just like Miriam I agree with everything she says it’s costly to go private and once you do you find it hard to get help from the NHS so it’s a catch 22. I know there should be no price on health but in some instances you have to have money to enable you to go that route and as it is I am already paying out for labs which should be standard for the NHS…
TPAU is the Thyroid Patient Advocacy UK which you mentioned in your article. I have been a member for some time now, they fight for the rights of thyroid patients. I used to belong to the BTA(British Thyroid Association) went to a few meetings but found there ideas on thyroid disease are totally lving in the dark ages and the guess speakers doctors radiologists dieticianes are totally not up on the disease. I guess iwas a little outspoken too when they asked did anyone have any questions and some of them just couldn;t answer mine which prompted others to askk there questions making the speaker uncomfortable but I think we have a right to ask questions about treatment and this one was RAI he said it was okay to have with thyroid eye disease Bullshit. I’ts another way of making money through other peoples misfortunes and calling themselves representives give me TPAU anyday people who know what it’s all about how to work the NHS and fight for what you should be getting.
I am planning to go off my T4 after I have had my appointment in the next couple of weeks with my endo and if he refuses to prescribe cytomel then either I will get my own and tell him or just stop taking the shit they are giving me because it just isn’t working.
I know the consequences but sometimes you have to be a martyre to help others and I have had enough fighting them with this and I need to help myself.
I will be fine I’m a tough cookie. It may not come to that if I get my wish.
Lolly
Lolly, I really sympathise with your plight. It is good that TPAU (wasn’t that also an 80s singer?) exists. I am glad you were outspoken – that is one of your very endearing qualities, that you are not afraid to say what you think when you are passionate about a subject.
Please keep me posted on what you decide to do. Whatever it is, I am sure that it will be the right decision for you.
Yes Sarah TPAU is an 80’s singer LOL.
I am passionate about what I want to do and that is feel better than I do now even if it meas getting worse before you can feel better.
Lolly
Lolly, I think T’Pau did that song “China in your hand”: I’m a big fan of 80s music! I am really rooting for you and I know you will do all that it takes. I just hope it takes less than you anticipate if you catch my drift. Keep me posted. Love, S
Thanks Sarah for your kind comments, cheering you on too:)
Lolly, I agree with you too, and like Sarah, sympathise with you also.
I know that TPAU and BTA exists and follow their web sites. I totally agree that TPAU work hard to represent all us UK Thyroid sufferers get a fairer deal from the NHS.
Good luck Lolly with coming off T4 and hope you will get prescribed Cytomel. I think that I would benefit from it, if only my doctor would stop fobbing me off with just Levothyroxine! Its like talking to a brick wall trying to persuade my doctor to check my T3 as well as T4 and TSH! My doctor knows I know all there is to know about Thyroid disease and even admitted that I know more than her, but still won’t believe me when I say I need my T3 tested!!
We definitely are short changed here in the UK! So much for our so called wonderful national health system NHS!
Miriam and Lolly, thanks again for sharing the UK perspective. Things desperately need to change! I still worry about my own mother who is definitely undertreated and I suspect my sister may have problems too, but she is as yet undiagnosed. Miriam: please keep me posted on what goes on with you and W, but I know you will anyway. As I said before, I will help any way I can. Love, S
It seems we have all had very different but similar experiences with our health, and Doctor’s. I will be the first to say I am A stubborn woman, Followed by the agreement of all who know me, lol. Gifted me with red hair, which I say is a warning to others of my stubbornness. Red hair or not when I set my mind to something It gets done, my mom called it control issues.
Having approached my health in a determined way. If my Dr. said jump I would ask how high, then research how to jump higher than he suggested. All led to failure, every diet, exercise program, medication, even meditation. Funny part is I loved the challenge each time and expected it to work each time. The other term my mother used for me was Pollyanna.
My thought was If I just wanted it bad enough and did exactly as I was told Success would be the end result. Before my heath became debilitating to the point it is now I was very strict on our diet, mostly raw, organic if possible sugar was evil…..I still had fibromyalgia but felt my healthy habits would prevent me from the family heath issues. diabetes, heart, lupus, cancer, thyroid, and fibromyalgia plagued them all, right? I thought I would outsmart those damn illnesses.
Each failure was a blow to my self esteem, the Dr would accuse me of not following directions, people assumed because I was fat I was lazy or over ate, making me more determined to prove them wrong.
Every meal was made from scratch. Finding joy in doing better with less than others who made more money. I had learned to sprout seeds for healthy cheep snacks, dehydrated flax seed crackers are fabulous. The store’s would sell the nearly spoiled fruit for next to nothing, I made fruit smoothies, lemonade from bad lemons.
My children were my life, I wanted them to have better health than me or my mother had. Never once did I guess I would get to the point that making it to the kitchen let alone cooking would be an issue. Did I fail, the Doctors, genetics, or all? No one is perfect, I have had more than my fair share of crapp doctors, and the genetic cards are stacked against me. Panic and fear built up every time I had to go to another Dr.
One thing I will never do ever again, is to blame myself! And I will not accept anyone else trying to say that if I ate perfectly I would be healthy either, I did my best and got sick anyway. I am now celiac and I have no option but to be gluten free, just as a diabetic has to avoid sugars and fats. The expense is twice that of regular foods, worse because I am bed ridden most of the time, and the fresh fruits and veggies I would normally turn to are not an option due to the degenerative disease that has dissolved most of my teeth (in spite of brushing & flossing three times a day, and being a dental assistant) in only four years.
I have taken classes, studied books, gone to dietitians, Naturopaths, physical therapists, and have taught a couple of classes on nutrition. The one thing I have learned is you can only do what works for you, you cannot force others to live your lifestyle, and the results of diets and nutrition are different for everyone.
In a perfect world we could all afford good organic foods, be able to get the nutritional supplements without fear of interaction to our medications, have the strength to cook and shop for those healthy things we need, or have insurance to cover a good doctor. We all deserve the best life has to offer, but we don’t all get it. It does not make us failures or worthless, and it gives no one the right to judge us or try to tell us we are wrong in our choices.
To assume we don’t do our best with what we know, or have at the time we make a choice is cruel. Assuming we are in a position to change our situation when we find it is bad is also unkind. Do to our health often the simplest task for another, is like climbing mount Everest to us. Yet so many people do make assumptions.
What I love about the people who share their stories on the Dear Thyroid site is the freedom to show our fear, sadness, mistakes, and not fear the judgment we often get from family, friends and doctors.
Heide – thanks for sharing you fascinating, but sad story. I know that you are extremely knowledgeable about your health and what a horrible struggle you have been through. of course, we are crossing our fingers for you that this new doctor gets you closer to getting diagnosed and treated. I also hope that some time soon you can get the degenerative dental problems sorted and get diagnosed so that you finally have the energy and dental strength to eat more.
What makes Dear Thyroid so special, in my eyes, has always been the freedom to share our stories, the support and understanding from others without judgement, and the learning from one another in all our differences.
The whole package is priceless and I feel so fortunate for the truly caring people I’ve come to know through Dear Thyroid and the friendships I know I will always have.
The learning from others being so open with such personal journey’s is so valuable and I was saddened by feeling this was threatened, and I stand at how I feel, but I have risen above this and have not lost sight of why we are all here. This community is too important and has a very important mission in motion, and I am very thankful that this community came across my path.
Just as we will always have bumps in the road on this life-long journey, this community will also have “bumps in the road”.
Lori, I am very happy that you seem to have got so much out of Dear Thyroid. Thanks for your contributions. You are a valuable member of Dear Thyroid and I always enjoy hearing your voice and appreciate your support.
Lori,
You certainly are a very valuable member of DT a thyrella sis what would I do without my groupee.
Sarah thanks for understanding and being caring a supportive I know you have your own difficulties yet you still find time to help everyone else with your great articles. Keep it up your doing a great job.
Miriam I am with you on the NHS. I get my private labs done with Lab 21 and just send for a kit book them with my nurse prationer they daren;t refuse me and they do there’s and then the fT3 which I send of by post if you need the address or email rdetails let me know. I have enough proof that I am lacking in the ft3 department.
Lollyx
Thank you Lolly. I appreciate your comments. You take care of yourself!
I have a few points that I feel I need to make:
Cynthia–I had considered not responding to you at all, or by email, but I feel this just might be a “teachable momentâ€. Dear Thyroid is a support group. We support each other. We don’t have to agree in order to be supportive. Your comment “People just have some nerve!†was uncalled for and not exactly productive. If others seeking support here see that they could be chastised in the comments, they may not want to participate, and miss out on so much information and help.
Your comment was also off the mark. NO WHERE did I say that just changing your lifestyle and habits was enough. NO WHERE. What I did say, was we blame doctors for being incompetent, yet we frequently don’t necessarily follow all the advice they give us, then gave an example involving nutritional changes along with medication. I am a thyroid patient, I take thyroid medications, and I decided to also make huge behavioral and lifestyle changes, which I know have helped in my journey towards wellness. Your mileage may vary.
I frequently speak as a “devil’s advocateâ€. We all have to remember that we are not necessarily a representative sample here. We come to Dear Thyroid and other support sites, because we have had thyroid issues that have not responded well to treatment, or that were complicated and difficult to diagnose, etc. And while, yes, I get that there are many more out there, there are also MANY other thyroid patients who do “just take the pill†and do get better (I know several personally), and those people don’t need support groups. If those that are here always speak with the same voice, then we will never learn and never grow. We complain that doctor’s don’t think “outside the box†and yet, why do we always think we’re right and they’re wrong? It’s the same error of thinking, and we have to be careful to not fall into that trap.
Sarah (sorry, I’m gonna use you as an example for a second), wrote a long article about her journey and the journey of others. She described how she struggle(d)(s) with her health. And then in the comments section, she talked about how she will not make a nutritional choice that has tons of research and anecdotal evidence to support its benefit to thyroid patients because she doesn’t “want toâ€. Fair enough, it’s a big sacrifice and not for everyone. I embrace that we all make our own way. But then how does she know that “modern medicine†or “doctors†are to blame when she can’t achieve balance? Maybe that was decided with her choice. (And Sarah, I again apologize as I realize I made a big presumption in those last 2 sentences to finish the point–and again per the end of one of your comments, I never claimed it was “the answer†for everyone.)
So, to go back to the very beginning, my WHOLE POINT of my previous comments was to highlight that we must not place all the blame on doctors. Sure, vent, scream, kick, whatever. I had a doctor that almost led me astray. And now, I know that I can’t blame him 100%, because I was a part of that equation. There are, indeed, some BAD doctors. Either they don’t care, don’t want to care, are all about the money, or whatever. There are also doctors who have all the best intentions but may not have been best served by their education and the current medical system and so lack the knowledge or tools. As a support community, if we want the gain the support of doctors, get them on our side, get them to listen, get them to change–do you think that is going to happen if at every turn they see nothing but doctor bashing? I just think we have to be careful that we don’t shoot ourselves in the foot.
And if you want to disagree with me, go right ahead. Half the time I probably actually agree with you, but just want to make sure we’re considering the other side. What I ask, though, is that you actually read what I say for comprehension so you know exactly what you are disagreeing with, and treat me with respect, because yes, I do have “a lot of nerve” thankyouverymuch, and this is my home as much as it is yours.
Dear Robyn,
Everyone is entitled to their opinions, but I would like you to know that I put my heart and soul into this column and into creating a positive atmosphere to help other people. The point of my column is to talk about the struggles we go through so that others can relate and feel free and comfortable to identify and share their opinions and experiences. I strongly believe that this sharing is part of the healing process.
I feel that I responded tactfully to your comments despite the fact that some of them were deemed to be offensive. I feel rather protective of my readers, you see and I do not want them to be hurt, but it seems this is inevitable.
Therefore, I am rather puzzled as to why you then felt the need to attack me and my column. You don’t know me so please don’t presume that my health condition is my own fault. This column was specifically about bad experiences with doctors. In the past, I have also written about good experiences, so in my book this is not doctor bashing, but simply facing up to the fact that there are a lot of bad doctors out there and also providing tips on the best ways to deal with this. I do find your presumptions both offensive and hurtful and would ask you to desist. I have Hashimoto’s because it runs in my family. The same goes for PCOS. Whether or not I choose to take a particular dietary choice is completely and utterly my prerogative and as I am an intelligent and educated human being, I am perfectly capable of making this decision for myself. I do not need or want your approval or disapproval.
I will stress again that I spend several hours a week writing this column. I am still struggling to get well and am still very tired, but I do this because I truly want to help others and I know from their comments and support that I am. In turn, this is also a very rewarding experience, or at least it has been up to now.
As editors, I feel it is up to us to act professionally and to mutually respect each other, but at this point I am sad to say that I am wondering whether this is the case.
Please let us end this discussion here as it has already done enough damage.
Sarah,
My comment was aimed at Cynthia, who told me I had “some nerve” for my opinion, which she didn’t even tag correctly.
I am sincerely sorry as I appreciate your articles, and know the effort they take. However, I am not sure what you mean by “offensive” remarks to your readers. There was no attack at any point, either, other than to defend myself. My point regarding your personal story was that we all take our own road to Rome, and then have to take responsibility for that road, which you have (and I have, but not everyone has). Which is what I said, and which is not-at-all the same as your accusation of “victim blaming”. None of us is to blame for our disease(s), but we are all accountable for what happens next.
On more than one occasion today you have essentially misquoted me, and apparently any clarification I make is unprofessional. I had hoped that by restating, rewording, or whatever you’d like to call it, the idea that there are always many sides of the coin to consider, a productive dialogue could be started about your subject matter. Apparently I was incorrect. Feel free to ask the tough questions about my articles though, because more than once in my life, I’ve done a 180 degree change in my thinking about a subject because of the input of another and I hope that never changes.
Thank you for your comments, Robyn. Let’s leave it at that.
Dear Sarah, Thank you for you wonderful article.I never had a hard time being diagnosed with hypothyroidism back in 2006 but i really had to work hard at being my own advocate. Unfortunately I eventually got to the point of just accepting the treatment and accepting with the feeling of being tired all the time, accepting being overweight (because no matter how hard i tried the damm weight just wouldnt come off) until i came across your articles and helpful information. I wanted to thank you because of you and your encouragement I found a new reborn advocate in my self and found the strength to confront my doctor who finally agreed to put me on t3. I already lost several pounds and havent change anything in my diet yet. I hope i can get my weight down and oh how i dream of fitting into my old clothes and actually liking what i see again when i look into the mirror. I actually think this T3 is what my body was lacking. Thank you Dear Sarah, you are truly a gift! I look forward next weeks column.
Jane, thank you so much for your comments. I didn’t realise that my articles would turn other people into patient advocates, but I am so delighted to hear it. I am very proud of you that you confronted your doctor and that you have made so much progress because of this. You go girl! This is awesome news! Keep up the good work!
Jane,
What great news it’s lovely to hear. Now do tell who is your docotr is he in the UK I;’ve been advocating for myself for years and am stil banging my head up agninst a brick wall.
there are good and bad Doctors it’s finding the good ones and hanging onto them that counts.
I hope you get into your old clothes and they fit snug.
Lolly
Sarah,
quote:-Thank you for your comments, Robyn. Let’s leave it at that.
I think that’s the best way.It such a shame but I think so much good has come out of the article. So keep up the good work.
You have my thypport abnd thyumbs up!!!
Hugs
Lolly
Robyn: I said you had some nerve not for your opinion but thinking that you are superior to everyone else because whatever you said you done worked for you. Im done.. im not in high school to play these games.
Cynthia….THANK YOU for saying exactly what everyone else is thinking. I am totally in complete agreement with you. Unless you are in the medical profession specializing in Thyroid disease, then you have no authority in thinking you are superior in telling other sufferers exactly what to do. Everybody’s Thyroid gland will respond differently.
So yes, I think enough is enough and I hope Robyn, you read this and realise that not everyone agrees with you. When you have had the Thyroid condition for as long as I have, then maybe you will realise that the treatment is not “1 size fits all”.
Sarah, I do hope you will continue to write your columns, and not be put off by the likes of Robyn. You are what Dear Thyroid is all about and we need more people like you to write and make the web site informative and interesting for all Thyroid sufferers.
Sarah, this was an extremely good and much needed column, as all of yours have been. I, and obviously so many others have gotten so much good information and encouragement from your columns. I am especially proud of how you have handled some very difficult and unnecessary comments.
I wrote above that I have risen above the upset that I felt so deeply, and I tried, but honestly it does not hold true after further hostile comments from Robyn. I do not think this kind of hostility belongs in the Dear Thyroid comments or anywhere on this site. It is not productive and I agree with Cynthia, this feels very much like high school. “lets leave it at that”