Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

The inevitable fight with the doctor

with 6 comments

I’m writing this in the garden having just returned from my doctor’s appointment. I have a variety of feelings about what has happened. On one level I’m fuming, on another level I’m relieved, on a third level, for some reason, I can’t stop laughing. Perhaps because I find cliché extraordinarily funny.

I knew that the appointment wasn’t going to go well as soon as I arrived. Somehow, I managed to remain self-assured and assertive throughout, and I managed to go in alone, without my partner holding my hand. The opening line went something like this:

“And how are you today?”

“Not very good still, but better than I was last time.”

“Hmm, I didn’t think so,” said doctor, putting on her sympathetic face. “Let’s take a look at your depression score today.”

“I’m not depressed.”

It went downhill from there. I refused to take another depression score. What the heck is the point of taking a depression score that has pearlers in it like “do you feel fatigued?” and “are you having problems concentrating?” Hello??! Surely one should rule out the physical causes of these symptoms before putting it down to something as airy-fairy and woolly brained as “depression”. FFS.

I explained to her that the reason I had been upset the last time I saw her was because I had been in a great deal of pain with my old DVT leg. I told her that I had since figured out it was connected to my carpal tunnel syndrome, as it always came on at night, and that this, at least, had improved. She seemed to go with this.

I told her that my symptoms weren’t caused by dieting, because dieting lowers TSH instead of raising it. “I knew that,” she said. Fair enough. She was perfectly happy to blame it on dieting last month, so she has obviously brushed up on her endocrinology.

This threw me and I ended up almost covering for her. “So, erm, there was no point me worrying about that then.”

She refused to increase my medication. “We wait six to eight weeks before testing again as it’s very important that your results don’t go too high.”

I have no idea what the heck the point of this lengthy delay is, since thyroxine only has a half-life of seven to eight days and it would have reached a maximum level in my blood weeks ago. There are doctors in the US who are happy to raise your dose after the first two weeks. The standard is to raise one’s dose every month. Last month, she told me she would test my blood again in a month’s time. She even told me “I can’t give you a free prescription quite just yet,” implying that she intended to treat me for life.

She told me that borderline results like mine shouldn’t really get treated. This is complete BS. I turned around and told her that UK thyroid treatment is appalling and backward, and in the US the TSH cut off is 3, and people with borderline results who have symptoms get the treatment they need.

“Would you like to see my basal body temperature chart?” I asked.

“No, that doesn’t make any difference.”

“But before my treatment, my basal body temperature was 35.5!”

“That doesn’t make any difference. It would be against professional ethics for me to give you more thyroid hormone, if you want to get treatment you need to go to another doctor. I gave you a trial of thyroxine to see if it made a difference. 98% of my colleagues wouldn’t have even done that.”

“Then I’d like to request a referral please. There’s a private doctor I’d like to go and see.”

She kept calling Doctor S ‘Mister.’ Perhaps I’m being paranoid, but I felt she was trying to undermine him.

“Are you sure you wouldn’t like to go and see one of the Sheffield thyroid experts, like Professor Weetman?” she asked.

Hahahaha, thought I. “No,” I said emphatically. “I’ve heard very bad things about him from other thyroid patients.”

She didn’t like that at all, she pulled a real face. It wouldn’t surprise me if she had consulted Weetman about my test results and that was why she had suddenly taken this hard line. Weetman is a bloody dinosaur who – shockingly – thinks anyone with a TSH of under 10 is just fat and depressed, I quote, “the poor dears.” He’s probably single-handedly held thyroid treatment protocols back by ten or fifteen years in the UK.

“Can I explain something? I’ve had these symptoms for five years now. They came on after a bout of bronchitis. I remember having a lump in my throat and I had heart palpitations and muscle cramps, and I started losing weight. Then about six weeks later, I started gaining weight for no reason, and I gained over a stone in a few months and I fought it all the way but it wouldn’t stop. I developed eczema on my face, it was really red. I’ve been to the doctor about this before but because it’s connected to my hormones, and I got ‘oh it’s PMS, it’s chronic fatigue.'”

“What were the results of your blood tests?”

“I was sent away without any,” I told her.

“Well at least I did that part right. I did test you for thyroiditis. But your antibodies are very low, so you can’t have a problem.”

“But sometimes it isn’t antibodies, it’s the infection itself that damages the thyroid.”

“No.” She shook her head quite insistently when I said this, though it’s perfectly well documented on official medical sites. Not that this is even relevant, since thyroid antibodies go up and down like yoyos in response to your overall immune behaviour, and usually they are at their highest when you’re feeling particularly great, and low when you’re feeling awful.

“It is–”

“Well, I’m not a thyroid expert.”

“I have got worse again recently and I had the same thing happen to me before Christmas, I had an infection and a period of feeling better followed by getting worse again.”

“But I have to treat you as a whole and I’m concerned that your symptoms are caused by depression and anxiety. Or they might be caused by something else. Remember we thought it was iron deficiency to start with?”

“Dr S is very good at sorting out concurrent problems like that.”

“Well, I’ll give you a referral to him. Do you mind if I send him all of your test results?”

“Not at all, he’ll need them.”

At least she promised to write me a referral letter and enclose my test results, and I can go and pick it up on Tuesday or Wednesday. Fingers crossed she doesn’t surf the internet before then and decide to do something radical like change her mind. I’m damn well going to tear open and read my referral letter and I bet it’s going to be unpleasant.

So that was how it went. This has really brought it home to me how poor the standard of care is for UK thyroid patients, and how tenuous things are for my future. If something terrible were to happen to Dr S, there would be no one else in the UK who would treat my problems correctly. Dr M is currently not taking new patients, and the GMC forced Dr D-P into retirement so he is unable to prescribe treatment, only guide it. At any time, the UK government could decide to close the loophole that allows prescription-free imports of prescription medications. I’m not sure what I would do then. I’d probably have to emigrate to the US, where naturopath MDs are ten a penny (except, no one can actually get into the US anymore, since the rest of the world is full of terrorists). I’d liken the treatment of thyroid patients today to the treatment of diabetics thirty years ago, before blood sugar monitors existed. You got your blood sugar tested once a month if you were lucky, you took whatever insulin dose your doctor set for you, and you were expected to die relatively quickly after diagnosis. For a long time after the invention of the blood sugar monitor, there was a massive fight against allowing patients to control their own treatment, on the basis that doctors knew better how to treat their patients symptoms than their patients did. These people don’t matter, let’s throw them in the bin.

I will freely admit to having problems controlling my emotional state at the moment. I am up and down, one day happy, the next kooky, the next sad. I’m unable to feel anger or irritation for very long. I frequently have physical adrenaline rushes for no apparent reason – when I wake up, after I eat, whenever I exert myself, and late at night. I have free-floating anxiety that latches on to any minor problem I might think of, which becomes very unpleasant late at night and makes sleeping very difficult. I have attention deficit disorder to the point where whatever comes into my head is what I go off and do, regardless of the importance of what I am working on. My memory is downright awful, and if I hadn’t written this down by now I would probably have forgotten half of it already. I used to be able to control these symptoms by cutting out biogenic amines from my diet, but now my body is so damned cold my enzymes aren’t functioning properly enough to keep me stable at rock bottom. These are all classic symptoms of hypothyroidism. That’s biology for you.

Many thyroid patients will attest that they had psychological symptoms long before physical ones. Treating these symptoms with sticking plasters would be completely pointless and unethical – for heaven’s sakes – how many drugs would I need? Ritalin, an anti-anxiety drug, a sleeping pill, an anti-depressant (for what? I’m not depressed, if I take prozac I’ll probably end up cackling manic), a drug for rapid cycling bipolar disorder? I don’t even know how they’d treat my memory problems. What are they going to do, give me something for Alzheimer’s? At what point are they going to start wondering where all of these different chemical imbalances came from, and whether they might actually be connected?

What I don’t understand is why doctors feel they have to blame any hint of psychological symptoms on an ill defined mental condition like “depression” or “anxiety”, as if the human brain is a nebulous cloud out of which anything can issue without external input. Why such a hard, engineering approach to physical ailments, but such a woolly approach to psychological ones? In my experience, the human brain is a soft machine, and perhaps 80% of the time, what you put in directly results in what comes out. Sure, some people manage to wind themselves into terrible states over nothing, but those people eat crap, drink, smoke, are stupid, easily led, and don’t analyse their own thoughts. I have an IQ of 145, and I have been using self-analysis and CBT techniques on myself for years. I am an extremely sensible person and I always work to move myself back towards neutral, and I’m always very positive and hopeful. I even went through a period of complete self-denial, where I tried to wipe out the notion from my mind that I had ever had a physical illness. I still felt like crap. Take it from me, CBT works for people who have psychological problems, but it doesn’t fix biological problems.

If anything, I’m very happy right now, because my life has been coming together and I’m close to completing my novel. That I’ve managed to do this in spite of so much adversity – fighting my brain all the way – is awesome, and I’m proud of myself. To be quite frank, I rock. Most people would have rolled over and died, given up, been put on anti-depressants, gone on the benefit, and probably lost their life-partner, their income, and their sanity in the process. I’m a fighter, I take after my mother, who is as stubborn as a bloody mule, and once she has her heels dug in you can’t move her with a ten ton truck. Now I just need to fix this stupid thyroid problem and the world will be a wonderful place. And by God I will fix it, if I have to treat myself with drugs off the internet and buy my own blood tests, I will damn well fix it.

I’m almost inspired to take up that old idea again of sending myself off to medical school. That’ll show ’em, the barstards.

— End of Rant —

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Written by alienrobotgirl

12 June, 2009 at 12:19 pm

Posted in Thyroid

6 Responses

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  1. Hi Padowan

    Don’t give up without trying first! Dose yourself up with B12 or something before you go, it helps a lot with my confidence. Rehearse in your head the arguments and counter-arguments.

    You can always go and get advice from Dr Barry Durrant-Peatfield, you aren’t entirely on your own!

    alienrobotgirl

    12 June, 2009 at 4:54 pm

  2. I was hoping to see Dr Skinner as well but after realising that I needed a referral from my GP I didn’t want to have go through a similar experience as yours. I know my GP won’t take me seriously. Looks like I’m going to have to treat myself.

    Anyway, good for you and I hope you fix it!

    thelastpadowan

    12 June, 2009 at 4:42 pm

  3. Hi,

    Actually, i did go to see Dr Peatfield and twice tried to follow his treatment protocol but was unsuccessful. I should have contacted him again but for various reasons I didn’t. The thing is, I would much rather be under the supervision of a doctor who could monitor my treatment and adjust it accordingly as would be the case under Dr Skinner.
    I would like to be able to see him whenever I needed to and ask questions that may arise.

    Treating yourself with thyroid hormones is quite a scary prospect but now I am much more knowledgeable about this subject and also about myself and my body’s signs and symptoms to try again. I suspect my adrenals weren’t quite up to par when I started taking Armour although I had followed Dr P’s advice and was taking Nutri Adrenal Extra. The problem is I may need something stronger, like cortisol, which only a doctor can prescribe.

    I am determined to get to the bottom of all this and be well!

    thelastpadowan

    13 June, 2009 at 1:26 pm

  4. Your appt and what the doctor said was quite similar to the 2nd opinion I got from a DO (Doctor of Osteopathic Medicine) in my HMO, except when she said something very much like –

    “That doesn’t make any difference. It would be against professional ethics for me to give you more thyroid hormone, if you want to get treatment you need to go to another doctor. I gave you a trial of thyroxine to see if it made a difference. 98% of my colleagues wouldn’t have even done that.”

    – you stood up to her and asked to see someone else, but I became deflated because she was my “someone else”. She ordered an expensive panel of blood tests for food allergens (because of the sore throat that popped up from the super low dose of Synthroid) though I knew that wouldn’t shed any light.

    I went home with a sample of Lexapro antidepressants to try (I didn’t take them after I looked them up) feeling like I got the “hysterical fat menopausal female brushoff” treatment, except I wasn’t fat, wasn’t hysterical, and wasn’t menopausal (ok I was and am still perimenopausal).

    Of course, I DID become quite depressed for a few weeks after that appt because it felt like the system (the HMO docs, the too–broad reference range, the unwillingness to consider symptoms at least equally with lab results) was stacked against me, and I started to doubt myself.

    But I kept reading and learning (as you have) and considering my options. When I was able to make an appt with a recommended doc (Dr. Kenneth Blanchard – near Boston- from Shomon’s list) during the time I would be only a three hour drive from the doc during a trip to visit my family in NY, my mood lifted quite a bit, and after that my outlook was much better.

    But the hopelessness one feels when “trapped” by a system that seems stacked against us is tremendous, isn’t it? I feel very fortunate that I had the wherewithal to seek care from someone outside my HMO system; not everyone does or they worry it might not be worth the risk (risk of time, effort, & money, esp if one needs to travel).

    Isn’t it galling that the pervasive view in medicine is that low thyroid conditions are “simple” to detect and and simple to treat? The typical conversation between patient and doctor seems to be the same script, even when the patient has done their homework (perhaps it’s worse then, doctors HATE patients who self-diagnose).

    My son’s first grade teacher suffers from Hashimoto’s – for many years, she was untreated, but was constantly seeing specialists. She went through a hysterectomy that was probably unnecessary. By the time she was diagnosed properly, her thyroid gland was nearly undetectable – it was so destroyed by the antibody attacks to it. I can’t imagine being in her shoes – and being in a classroom full of young elementary school kids. I’d tear my hair out just from the noise alone. And I’m quite sure the kids didn’t get the best of her teaching abilities during that period, too.

    And I’ve since talked to many people who have been treated (undertreated) for hypothyroidism for years, even decades. They all exhibit and describe unresolved and ongoing symptoms, but they usually have no idea that there are other treatments besides Synthroid and they don’t know they might be able to feel better with a different treatment protocol.

    Good luck with the next stage. Looking forward to hearing how that goes.

    goingagainstthegrain

    13 June, 2009 at 3:54 pm

  5. Lately I’m of the opinion that trainee doctors go into endocrinology because they’re not very clever and they think it will be an easy ride. I can’t think of any other explanation that fits the endemic stupidity of today’s treatment protocols, not only for hypothyroidism, but also for diabetes and sex hormone imbalances.

    I don’t understand why the average GP thinks they’re enough of a psychiatrist to declare a patient hypochondriac or depressed even when they have visual symptoms of illness and out of range blood tests. The only psychiatry the average GP learns is what they’ve picked up from women’s magazines and Oprah.

    Dang it, when she said “I’m not a thyroid specialist,” I wish I’d shot back “and you’re not a psychiatrist either.”

    Hmm. On second thoughts, perhaps that would have antagonised her.

    alienrobotgirl

    13 June, 2009 at 11:20 pm

  6. Wow, ARG, you did really well! What guts! You did way better than I would have.

    sideshowbelle

    16 June, 2009 at 9:43 pm


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