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,
Tags: chronic condition diagnosis, chronic conditions column, chronic illness health column, Dimwit Doctors and Tricky Treatment, doctors insensitivity towards patients, Flying With Broken Wings: Difficult Diagnoses, improper treatment, misdiagnoses, Sarah Downing Dear Thyroid Editor