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Flying With Broken Wings: Difficult Diagnoses, Dimwit Doctors and Tricky Treatment

Post Published: 10 April 2010
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Category: Column, Flying With Broken Wings, Thyroid Symptoms and Effects Column
This post currently has 60 responses. Leave a comment

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

  1. Dear Thyroid says:

    To be honest, this is incredibly disheartening to me, and overwhelmingly upsetting.

    The spirit and vitality of this community, is to express our opinions free of judgment. In addition, we seek to obtain support from each other. And, in turn, provide support to each other.

    Bashing each other is not what we do, especially when we disagree.

    The bottom line is this, in my opinion: The majority of us have been through HELL. Due to gross medical mistreatment and neglect, we haven’t been diagnosed and, or treated. Moreover, we’ve lost too much of our lives, financial wellbeing and time, to diseases that we never invited into our lives. The devastation of this impacts our sense of self, our families, lovers and friends. We are all trying to find our way back to ourselves. All of us are eager to reinvent ourselves. And we need each other to do so.

    We hope to find great doctors, which are far and few between. Most doctors barely diagnose us. Often, if they think we aren’t ‘hyperthyroid’ or ‘hypothyroid’ enough, they won’t treat us. Moreover, rarely do doctors provide us with an explanation about what we have, much less demostrate a willingness to work with us. This is disgusting.

    Our hope and goal is to change this — The more we speak out about our diseases, write letters to our thyroids, rant about our symptoms and connect with each other in comments, we have evidence; LIVING PROOF expressing the realities of our respective diseases.

    This is also part of the reason that we created a section in the forums for PATIENTS TO ADD DOCTORS. If a patient has a great experience with a doctor — WOW — that’s a doctor each of us want to see, right?

    I’m very sorry that so much dissension occured regarding this installation. If anyone feels hurt, angry, marginalized or anything else, I am SORRY.

    I also think we need to be clear about what our individual and collective objectives are. We don’t want to hurt each other. We want to support each other. We want to the opportunity to hear what others have to say, even when we disagree.

    Finally, this column, like all the columns on Dear Thyroid, are important to me, they are my children. Each letter submitted, is a gift and treated with the utmost respect. They are also my children. Each individual behind these comments MATTERS TO ME, deeply. There isn’t one person here that I don’t wory about, think about, care about, or want to know more about. I digress… you are my thyamily. I will fight for each of you.

    Katie-

  2. Lolly says:

    Dear thyroid Katie,

    It is also disheartening to me too, I see so much support and good work done here and yes people should be able to Voice there opinions.But on the other hand they should also conceider and respct others opinions too like someone mentioned one size doesn’t fit all and that attitude my way or the highway doesn’t cut it for me we all do what we can to make changes in our lives and know it isn;t easy little steps not a mountain.
    And Doctors we won’t go there but if I want to flame a doctor I will, because I’ve had some crap ones and still do it’s all well and good saying find another but me I want to educate the dumb bastards I got already even if it means being radical.

    I don’t know how things have got out of hand and I know you wouldn’t like this at all but you have to kind of listen and see what is going on and think well they all can’t be wrong. I hope things improve and we can get back to the loving caring thypportive place this is.

    Just my opinion even if you don’t like it you can agree or disagree.

    I still love you Miss Katie like you love your thyfamily

    Lollyx

  3. Christina says:

    After browsing through all the comments I too feel the need to post my opinion here.
    Katie, I totally agree with everything you said.
    This community is about supporting each other and finding a silver lining.
    Every single person here is imporatnt to me and I don, ´t like the thought that any member of our community gets hurt or feels misunderstood.
    The way in which everyone here cares about each other amazes me every day.

  4. Connie Long says:

    I am in my own nightmare and don’t know where to turn! I have all the symptoms of hypothyroidism, my mother had to have a huge thyroid goiter removed and radiation when my age(63)and my Dr. says I am a little hyPERthyroid which I have no symptom of. These are my current #’s T3-27.8 T4-6.5
    T7 index-1.8 and TSH 0.74. Does anybody know if this means anything and WHAT!!

  5. Dear Thyroid says:

    Connie – Please hit these links via Mary Shomon regarding interpreting lab values. If you don’t find what you need, please let us know. http://bit.ly/7cJf0T

    So sorry that you’re going through all of this crap right now. It is a nightmare, no doubt about it. We wish you didn’t have to endure it.

    Keep us posted on your progress. Let us know how you are doing and feeling.

    xo

  6. Dear Connie, I am hoping that the links Katie gave you will help. I just want to let you know that you are not alone. It is overwhelming when you are first diagnosed, trying to understand and make sense of everything, asking why me and learning to accept that things have now changed. However, our community has been through this and more and we will be more than happy to support you in any way we can! Hugs, Sarah

  7. Robyn says:

    Wow, Cynthia and Miriam, just wow. I hope you read to the end, but somehow I doubt it.

    If you read what I wrote, very closely–I was not espousing that “one size fits all” or that “I am superior”. There are MANY ROADS TO ROME, as I have said now repeatedly. While my original comment may have been poorly worded (clearly) to elucidate my original point–and everyone’s reactions support this–is that sometimes (or even lots of times) we are unwilling or unable to do something a doctor advises.

    I’ll try again: If your doctor said you could take a pill, OR take a pill and paint your face blue for a month because some people don’t respond to the pill alone, would you do it? Most people would not paint their face blue, *until* they found out that they were one of those people for whom the pill alone did not work. Or, they still might not believe blue faces have anything to do with it and feel the doctor was a bloomin’ idiot. People in general, and I am not immune, will do the *least* they have to that is effective–and why not? Why do more than you have to? But if you find that you did have to do more is it anyone’s fault? What if your doctor didn’t know about the blue face thing–does that make him stupid? Should we hang him by his toes and call him a jerk, or should we band together and try to educate him?

    I think Lori is the only one who originally “got” my comment, and she responded in disagreement, but respectfully, and for that I thank you, Lori.

    For the rest of you who did not, I feel a whole range of emotions–disappointment, shock, anger–rather than think “Well, that’s bizarre that Robyn would cop an attitude like that, let me ask her to clarify”. Or, “I’m not getting your point, what does this have to do with today’s post?” Even–“Hey Robyn are you off your meds? You’re not making sense, girl!”. In any case like that, misunderstandings could have been cleared up, and we could have used disagreements as a discussion starting point. Instead, I was accused of “having nerve”, “attacking”, “being superior”, “offensive” and “unprofessional”. Instead, there was a group pile on of ugliness, which I find very surprising for this community.

    I’m not afraid to be disagreed with, and I have no problem being in the minority–that’s how change is made. Otherwise, we would all still believe the world is flat. But before you assume I’m an asshole, maybe you could try to understand what I was trying to say, and assume that like the rest of you I want the best for thyroid patients and this community. I am sorry for any confusion, however, this entire situation has been a nightmare, not exactly the response and environment I expect from my other family.

  8. Lolly says:

    I think it’s time to draw a line under this now things have been said misread or whatever but to continue this is only going to be detrimental to others, DT and counter productive.

    I hope that we can all move on and do what we all do best and that is spread the love(I said Love not war)

    Robyn I always thought the world was flat, you learn something new everyday.
    And Hey Robyn are you off your meds?
    I think you needed to have the last word and I hope it is because this isn’t what DT is about yes we can agree to disagree but when it comes to flaming someone the buck stops there.

    Peace and Love to everyone.

    Don’t let me come after anyone cus you wouldn’t want to see a Graves rage.

    Luv you guys.

    Lollyx

  9. Robyn;

    I love this bit: I’m not afraid to be disagreed with, and I have no problem being in the minority—that’s how change is made. Otherwise, we would all still believe the world is flat. But before you assume I’m an asshole, maybe you could try to understand what I was trying to say, and assume that like the rest of you I want the best for thyroid patients and this community. I am sorry for any confusion, however, this entire situation has been a nightmare, not exactly the response and environment I expect from my other family.

    It kills me that you feel as badly and misunderstood as you do. It kills me that everyone feels as sad and upset as they do; as I stated in my original comment.

    I hear you regarding asking questions vs. making assumptions.

    To everyone: As Lolly said, let’s put this behind us. Nobody is walking away from this feeling good, which is sad, to be sure. However, we will get through this.

    I digress… We can’t fight each other. We are too busy fighting a disease. We need to support each other and be there for each other, even when we agree to disagree.

    As I stated in a post a few months ago, Remember where you came from; a doctor’s office, a diagnosis and a life that was turned inside out and upside down.

    Comments are now closed. Enough now. Yes? Yes.

  10. Connie Long says:

    I want to thank both Sara and Dear thyroid for the comments and encouragement. The link was very helpful and the ‘women’s health site is now bookmarked. I refuse to be a victim of my body or the health care industry so I have embarked on a noble journey of educating myself on the anatomy of a healthy system and how to provide NATURAL support for my body to work effectively. Due to an almost unrelenting series of events my immune system as been under a general assault for the past 8 years so my thyroid is not the only system to say enough is enough. My adrenals and pituitary my blood sugar and probably other systems have been harmed, BUT it’s never too late to start again! I’ll let everyone know how the journey goes.

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