Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

I have autoimmune thyroid disease – the proof

with 16 comments

After having a bizarre Christmas period during which I have had to reduce my thyroxine dose to nothing, I trotted off to the GP to ask for thyroid autoantibody tests.

The GP told me that she could not run the tests, and that I would have to be referred to an endocrinologist at the local hospital. To my frustration, I was told that I would have to wait 6-8 weeks for my appointment. The doctor wouldn’t even give me a TSH/T4 test.

As I have become very worried about the pressure pain in my sinuses and the periodic bouts of eye pain, double vision in my peripheral field, bloodshot eyes, and increasingly blurry eyesight, I explained to her my concerns that I may be developing Thyroid Eye Disease. She told me to go to the opticians for an eye test.

I have always had perfect vision. By perfect vision, I mean I can normally see a gnat’s whiskers across a football field. Being a little OCD, this makes specks of dirt annoying! I have only been to an opticians once before in my life, when I was small, and I was experiencing double vision (I was sent away to do eye muscle exercises by crossing my eyes).

I explained the situation to the optician, who examined my eyes and pronounced that yes, indeed, of all the different conditions which can produce blurred vision, double vision and pain, mine is consistent with thyroid eye disease. I am also now long sighted. I’m not too long sighted, only +0.75 in my left eye and +0.25 in my right eye (a decidedly uneven state of affairs), but it’s enough to give the world an unpleasant haze, and annoy the heck out of me when I’m trying to work on the computer. I won’t post a picture of myself, but I’ve looked in the mirror over the last few weeks, and wondered if I’m developing a squint – the reason being, my left eye is marginally wider than my right, and I can tell that I don’t look normal. I look sort of like this: O_o

Haha.

I really don’t want it to get worse. I’ve seen pictures of thyroid eye disease sufferers on the internet, and they look like cartoon people with eyes popping out of their heads. That would be deeply embarrassing, and decidedly unattractive.

So back I trotted to the GP, who asked “did they actually examine your eyes?” My dear GP, how I love her not. She is a perennial skeptic of anything being wrong with me and it’s obvious she just thinks Dr S overdosed me on thyroid hormone – well, she’s wrong, but I’ll get to that. I have an ophthalmology appointment (try pronouncing that phrase with your mouth full) at the beginning of February.

Meanwhile, I go home and panic about going blind.

I’ve read a fair amount of stuff about the crossover between coeliac disease and thyroid autoimmunity, and I’ve met people who swear that their thyroid autoantibodies returned to normal after they gave up gluten. I’ve been eating gluten since around August 2009 (during my first round of autoimmune tests, I had been off gluten for months, and there was no sign of autoimmune activity). The dates fit very well. I first started to get the dizziness and sinus pain in September 2009. I noticed that every time I ate gluten, I’d get dysautonomia at night, including bouts of mysterious palpitations. I really ate quite a lot of gluten over Christmas (I already had palpitations and a pain in the nose and eyes, so… meh). I was really, really hungry all of the time, and when you have guests and occasions and you go visiting, these things happen.

My day to day symptoms towards gluten have always been very mild compared to the ones I (used) to have to food chemicals when my metabolism was non-existent. I know that gluten has recently been causing me huge digestive issues and bloating. I have gained ten pounds in the last four weeks – not a normal state of affairs for either a coeliac or a hyperthyroid patient, and certainly a feat that breaks the laws of thermodynamics, but I know my body, and I have been on and off gluten for twenty years due to symptoms like these when I eat gluten.

So the situation is – if my unproven autoimmunity is being caused by or exacerbated by gluten, and I give up gluten now to save my vision, by the time I get my endocrinology appointment and get some blood tests, there will probably be no antibodies left to prove that I am autoimmune. So I can’t give up gluten until I get my tests.

I made a lot of enquiries and scoured the internet, but it’s simply impossible – at least in the UK – to get antibody tests for Graves disease done independently of the NHS. However, I can get Hashimoto’s thyroiditis antibodies (thyroid peroxidase – TPO and thyroglobuin – TG) tests done privately. So I decided to get them done, along with a thyroid hormone panel, and for good luck, a coeliac disease test. I went to my lovely local private doctor who did the previous set of blood tests for me that uncovered my folate deficiency and the temporary hyperthyroidism I had in the autumn.

Two days after I had the blood tests done, I got an endocrinology appointment – for the following week! It seems they were rather more impressed by my blood tests and eye concerns than my GP had been.

Darn it! Thinks I, I just wasted £200.

To be honest, I didn’t really like the endocrinologist very much. I found it hard to engage with him. He said a couple of things that annoyed me – such as “we call any TSH test under 10.0 subclinical hypothyroidism and you probably don’t need thyroxine.” In ANY OTHER COUNTRY than the UK, the absolute top cut off point is 5.0. In the US it is supposed to be 3.0, with a recommendation to lower to 2.5. In Belgium (or is it Germany?) it’s 1.5. So enough of this balderdash, “subclinical hypothyroidism” is a term invented by UK endocrinologists, who favour diagnosing their thyroid patients with made-up mental disorders (they fancy themselves as psychiatrists as well as endocrinologists).

I certainly set him straight on that one. I didn’t get into an argument over the validity of the TSH test, instead I explained to him what a very rapid descent I had been on when I had been tested. Most doctors accept that TSH is slow to catch up with T4 and T3. When I told him about how myxedematous I had been, and how I had developed carpal tunnel syndrome and excruciating nerve pain in my DVT leg, he decided that I was right, and my TSH “probably would have been a lot higher if it had have been left a couple of months.” (Hahaha! Small victories).

He was smart enough to test my cortisol levels, coeliac antibodies, vitamin deficiencies, and goodness knows what else – I took photos of the test orders but I haven’t had time to get them off my phone to reverse-engineer the abbreviations. He gave my thyroid a cursory exam – i.e. he poked it, looked at my eyes, and checked my shins. Graves/eye disease patients can get inflamed shin bones. In fact, mine have felt a little tender just below my knees, but I neglected to mention this at the time. The same fatty tissue that is in the thyroid and behind the eyeballs is also in the shins. In me, however, it seems to be in my sinuses as well!

I had a momentary panic after leaving his office, while waiting in the blood test station (with all the warfarin patients and diabetics – you can tell the diabetics, they’re elderly and have bandages on their legs covering their ulcers, the poor souls). I couldn’t see the Graves antibody tests on the order form – in fact he had used a different abbreviation to the one I was expecting – TSH R ab – thyroid stimulating hormone receptor antibodies. Apparently these are present in around 75% of Graves patients. The only other thyroid antibody test on there was TPO. So a positive is a positive, but a negative is not a negative it’s a null answer, because he didn’t order, or it isn’t normal to even test for, the other types of antibodies present. This makes me cross. Especially after just reading an abstract written by a professor from this very hospital, who seems to me to be a sloppy ignoramus, who alleges Graves is very easy to diagnose and rarely complicated by other factors (oh yeah?), so why should we even bother testing for Graves antibodies at all?

As we shall see, the above sloppy testing scenario is important, bear it in mind.

I have been sent away and given a follow up appointment in six weeks time. I have been told to stay off thyroxine to “prove” that I need to take thyroxine, which is the most ludicrous bout of non-logic I have ever heard of, and I won’t do it. If you have antibodies that come and go, of course your hormone levels are going to go up and down. If my autoimmune attack continues at the same rate, I will “prove” that I don’t need thyroxine? If my autoimmune attack abates, I will “prove” I do need it? What if my autoimmune attack abates the day after my test “proving” that I don’t need thyroxine?

I’m going to notice it if I go hypo long before my T4 goes out of range (it was twenty, near the top of the range when I was diagnosed). My TSH won’t go up in that short a time period. Instead what will happen is I will get heart arrhythmia, agonising back pain, and turn into a bit of a mentalist again, all so the endo can “DISprove” what my previous TSH has already recorded. This seems to me rather like inflicting unnecessary cruelty on a small, defenceless animal. If I am going to be up and down like a yo-yo for the rest of my life, constantly having my thyroid medication lag three months behind my actual thyroid function is never going to make me well. Rather, as diabetics were treated before home blood sugar monitoring existed (and you would be surprised to discover that doctors were vehemently opposed to home monitoring), going to the doctor once a month for a blood test is not going to be often enough. When diabetics received that level of care, they had a habit of being dead five years after diagnosis, which is a trifle inconvenient to the diabetic concerned.

I do not intend to spend one more day than necessary being ill, just so a doctor can retain his cognitive dissonance over what a good thyroid looks like on a semi-useless piece of paper, and continue to hide the fact that British endocrinologists have been failing thyroid patients for the last twenty years, (and no, I haven’t forgotten my teenage “fibromyalgia” diagnosis). Doctors keep alleging to me that it takes weeks for T4 levels to cycle up and down. I allege that I feel the changes within days, if not the next day, if my levels change. T4 tells us little about T3 production. If no one ever tests for the T3 in this country, how are we ever able to see what’s going on?

On Monday, immediately after my blood tests, I gave up gluten. I have been off gluten for little under a week, and my swollen, painful stomach has almost flattened off already, despite eating just as much food and carbs as before. On Wednesday I started to go cold. I woke up with agonising back pain and a heart beat in the fifties. I took 12.5mcg of thyroxine – a teeny tiny dose – and my back pain eased and my heart rate went up to normal. I took another 12.5mcg a few hours later, actually gave myself hyper(!) symptoms by developing a fast resting heart beat – but the back pain cleared up again within an hour of taking it. This doesn’t really make sense according to the standard view of thyroid treatment. It was definitely NOT a placebo effect. This is the first time I’ve had the back pain come back in weeks and weeks. This is going to be a very delicate balancing act indeed, though I certainly know people whose ideal is so finely balanced that 12.5mcg of thyroxine makes all the difference. My breathing problems are back. I can’t get enough oxygen. I get this when I am too low and when I am too high. It can make things confusing. Other that, I felt okay on Thursday and Friday, until today, Saturday, when again, I woke up with agonising back pain, and feeling cold. Obviously I’m also a little worked up (what do you mean, you noticed?), which tends to happen when I am hypo. It seems the attack may be abating slightly, after weeks of making me invulnerable to the freezing temperatures outside. Funny coincidence? I’m sure we’ll soon find out.

Today, my private blood test results arrived in the post.

Thyroid blood test antibody results

Thyroid blood test results

Back in May I was given a TPO test and a generalised autoimmune test to see if my white blood cells were up to any mischief. The tests came back negative. I was puzzled by this at the time, as everything fitted with Hashimoto’s thyroiditis – the periods of recovery, of feeling good, followed by the periods of feeling awful, the attacks that seemed to come on after I had infections, the Yersinia infection in the autumn/winter of 2008, which is associated with autoimmune thyroid problems, followed swiftly by a bout of feeling incredibly good (just like this bout), followed by the crash in the Spring of 2009 that finally got me diagnosed.

Ninety five percent of Hashimoto’s patients, and something like fifty or sixty percent of Graves patients, are positive for TPO antibodies. I am not. The GP’s lab uses a threshold of 35, so although I have come back with a “normal” score according to Lab 21, according to my GP’s lab, I am just over the positive threshold.

The GP never tested me for thyroglobulin (Tg) antibodies. I’m pretty sure the endocrinologist hasn’t tested me for it either, I couldn’t see it anywhere on the order form. Yet look at that, I’m barely borderline for TPO, but my thyroglobulin antibodies appear to be having a ticker-tape parade. That is a diagnosis very nearly missed. Suddenly the £200 I spent seems worth every penny!

Imagine the consequences of a false negative in my case, to my potential future treatment by my GP and the endocrinologist. The GP has spent the last nine months belittling my problems due to a TSH that was far lower than it “should” have been, and the complete lack of a T3 test (which I suspect would be the most useful test in shedding any light on anything). I can imagine the scenario now – an apparent absence of Hashimoto’s antibodies and a likely negative Graves test because the threshold is set so high… “We can’t find anything wrong with you. We think you are just overdosed. You probably don’t need much thyroxine. Go away, stop wasting our time.” It could have taken YEARS to straighten out. This is a perfect example of why YOU NEED TO RUN ALL OF THE TESTS.

The T4 and T3 test results are interesting. When I was diagnosed hypothyroid, the GP did not test my T3, but as I mentioned, my T4 was 20. As I mentioned, T4 levels do not dictate T3 levels. This test was taken during a period when I felt reasonably well, reasonably energetic, with neither symptoms of being hyper or hypo. I believe when I was first diagnosed, and for several months after, I was not converting T4 to T3 very well. I believe this changed during November or December, as that was the point when I stopped waking with aches and pains. During the two weeks before and three weeks after Christmas, I had an incredible amount of energy, and despite the worsening eye problems and bouts of palpitations, I felt very well. Recently, I have started to feel tired again.

Meanwhile, the coeliac disease test, which did not include a full panel, but was only the most basic IgA transglutaminase test, was negative. It is possible to be gluten autoimmune without being coeliac, about 9% of coeliacs are negative for this test. Anti-gliadin (anti-gluten) antibodies would have helped to shed light on this (although would not prove the slightest thing), but alas, Lab 21 don’t do them any more, only Genova Diagnostics do them. I will wait for my endocrinology tests to come back first, as they may (might) have been included in the coeliac panel, sometimes they are, sometimes they aren’t. If they haven’t been, (aargh), I might have to eat gluten again for a few days.

So, today’s conclusions are:

  1. Don’t trust the “expert”, he is probably biased and has his own agenda.
  2. Do your own comprehensive tests, they will tell you more about your problems than your doctor’s tests.
  3. Don’t take no for an answer, don’t let doctors get away with false assertions.
  4. DON’T SWEEP IT UNDER THE RUG!
  5. Cheer up, it probably will happen, if not now, in six or nine months time!
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Written by alienrobotgirl

24 January, 2010 at 3:39 am

Posted in Thyroid

16 Responses

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  1. Very good!

    Ive been saying for some time now over @ http://salicylatesensitivity.com/forum/

    that eating glutenfree and taking synthetic T4 is the cure for me.

    So great that you are finding the same thing!

    This is epic news ! 🙂

    kees123

    24 January, 2010 at 3:52 pm

  2. Hi ARG,

    My TSH is low, I feel hyperthyroid (have seen it in my Mum), but my T4 & T3 are normal – So – did you say above what I suspect about myself – that I’m hyperthyroid without having clinical hyperthyroidism – as in this will only get worse until someone decides to treat me? (Having by then completely lost it mental-wise?) Scary. Maybe I’ll get those 5 antibody tests. Thanks,

    M

    millnies

    29 January, 2010 at 6:25 am

  3. This is wonderful news AlienRobotGirl. What you have been through is terrible and your ability to persevere and apply your brain to the problem is commendable.

    tracy54a

    5 February, 2010 at 4:15 am

  4. I’m dying to hear an update- I have celiac antibodies and thyroid problems myself. I’m curious about your other test results…

    kellybrian777

    18 March, 2010 at 1:59 am

  5. Hi – i love your blog, have followed it for ages. I came across this woman’s website re thyroid/adrenal treatment. My GP has been stuffing me around for YEARS despite having very obvious thyroid probs (and, like you, I think I’ve had them all my life, just disguised as a different diagnoses!). I’ve finally pulled out all of my results and compared them to this woman’s info, and I’m going to be ‘doctor shopping’ now to find someone to help. Happy reading 🙂 http://bellsouthpwp.net/w/u/wurmstei/

    missskye

    15 April, 2010 at 4:23 pm

  6. Thinking of you and hoping you are OK. I’ve learned so much from reading your blog. I’ve been reading about Oral Allergy Syndrome. Another possibility for people who can’t tolerate fruit and vegetables. Best wishes to you.

    alwayswellwithin

    16 July, 2010 at 5:35 pm

  7. So what’s happening now? It’s been a while and you always have interesting stories to tell.

    goingagainstthegrain

    8 August, 2010 at 4:47 pm

  8. It’s been a long time since the last post. Nice to see that the blog is still alive! I started reading these texts just a few days ago, having read now ~130 entries. Very interesting!

    Valtsu

    5 September, 2010 at 12:54 pm

  9. New blog? Long awaited update coming soon?

    Glad to see you are still alive.

    L

    7 September, 2010 at 1:15 am

  10. Did the thyroid treatment help with the salicylate problem?

    LilEbranz

    10 September, 2010 at 2:58 am

  11. Yes. I’m not 100% normal, but I’m not nearly as sensitive as I was.

    alienrobotgirl

    10 September, 2010 at 7:42 pm

  12. Uh, I guess, maybe. It’s more that I have no money and I’m cancelling all my domain names as they come up for renewal.

    alienrobotgirl

    10 September, 2010 at 7:43 pm

  13. I hope that doesn’t mean the site will be closed down!

    If that’s the case I’m sure readers will be more than happy to donate to keep the site alive. I would. It is a valuable resource that has helped me a lot – there doesn’t seem to be much information online about the elimination diet and without your site I might not have tried it.

    I hope you feel ok. Have you got all the medication (and doses) that you wanted and have your symptoms settled down?

    L

    13 September, 2010 at 11:32 pm

  14. Hi, I’ve got an issue with Lab21 – they sell home kits for food intolerance testing. Are they quacks?

    L

    29 September, 2010 at 1:31 pm

  15. No, the tests are all proper functioning scientifically sound lab tests.

    The issue is whether you believe IgG reactions to foods produce symptoms or not. Current medical thinking says no – with the exception of coeliac disease.

    On the other hand, IgE reactions to foods definitely produce allergy symptoms.

    alienrobotgirl

    29 September, 2010 at 1:41 pm

  16. I just want to say a big THANK YOU for the entry on GAPS..a pile of!!! After being on the GAPS diet with both of my kids and just seeing them get worse, your entry was one that FINALLY (after 2 years of food intolerances) opened my eyes to amines!!!! Thank you from the bottom of my heart…we have initiated the Failsafe introduction…(although I’m having a hard time finding fresh meat/going to the butcher this weekend) and the changes have been nothing short of amazing. What’s better?? Our DAN Dr. is on board..knows all about it and is very supportive!!!

    Lisa Maresh

    7 October, 2011 at 5:39 pm


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