Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

The diagnosis

with 10 comments

To continue a little further from the last post without telling you what’s wrong with me, I’ll give you a few more of my whacky symptoms.

In the last week or so, my descent has sharpened again.

  • Dyslexia – my spelling has always been perfect, but in the last few months I’ve noticed a decline. I’m now swapping words like “too” and “to”, “stake” and “steak”, “threw” and “through”. Etc.
  • Concentration problems. I had them under control. Now they’re back, and there isn’t a damned thing changing my diet will do about it.
  • Mood destabilisation. I have been up and down like a yoyo, even before I knew what was wrong. I’ve had bouts of crying, bouts of hyperactivity, bouts of racing thoughts. I’m bipolar all over again. Mostly I’m depressed and rather panicked.
  • I seem to be desiccating. My skin is drying up. My lips are dry. My mouth is dry. My eyes are dry, inflamed, and very blurry, which is quite worrying as I can’t write novels or program computers unless I can see.
  • I’m so weak I can’t clean the house. I dread having to go to the supermarket. The doctors is a ten minute walk down the road, and I had to drive there. I haven’t got the energy to walk the dog. This weakness feels VERY different from the chronic fatigue/fibromyalgia I had when I was younger, which always felt to me as though my muscles were being starved of oxygen or building up lactic acid. This feels more like low blood sugar – actual trembling, and the inability to get any strength out of my grip.
  • Sleep disruption. Sometimes I get four hours sleep if I’m lucky. Other times I can’t wake up in the morning and I sit around feeling groggy for a long time.
  • My reactions to magnesium tablets are now beyond belief. It doesn’t matter what form of magnesium (I’ve tried several), if I take as little as 75mg, I react as though I’ve taken a sleeping pill. I fall asleep, and I wake up incredibly groggy, like I have a hangover.
  • I’m struggling to eat. I’m just not hungry. Food feels like a chore. Despite this, I feel very bloated, and my formerly flat belly is now full of water.
  • My sex hormones are definitely shot. I’ve lost at least a cup size, if not two sizes on my bra in the last two weeks. I’m just coming up to the point in my cycle where I’m starting to experience PMS again.
  • I’m cold. I don’t feel cold in the way I used to, which I think was circulatory, with my hands and feet turning icy, instead I feel cool all over to the touch. I’ve been having bouts of shivering now and then. I’ve been wearing my big woolly house coat over a cardigan over a dress. I’ve had my halogen heater on full whack.
  • My leg pain seems out of control. I’m close to going to the hospital for a clotting test. I’ve always been able to fix it in the past with about 400 i.u. of vitamin E per day. That worked for a while, but now it’s getting worse again in spite of an increased dosage.
  • I’ve had this lump in my throat since maybe Tuesday or Wednesday of last week. It’s been causing me slight difficulty in swallowing. If I bend my head back I can feel it, and I’m sure it feels butterfly shaped.

“There is one test result that has come back out of range,” the doctor said. “Your thyroid results have come back too low.”

My initial reaction was disbelief. When I was younger I used to think I had a thyroid problem. I used to do crazy stuff like necking coconut oil, which gave me energy but made me very ill as it is very high in polyphenols. But all of my “thyroid” symptoms, like dry eyes, weight gain, concentration problems, fatigue, and feeling cold went away when I started the failsafe diet.

When you have hypothyroidism, a chemical called thyroid stimulating hormone (TSH) rises in your blood, to try to make your thyroid produce more T4. Depending on where you read it, the normal range for TSH is anywhere between 0.3-3 mu/l, or 0.3-5 mu/l. Mine is 6.5, which isn’t that high, but still too high. My T4 is scraping right along the bottom of the normal range, apparently, though I don’t have a figure.

The doctor offered me a small dose of thyroxine. I initially refused out of shock. I said I’d try to eat more and come back in a couple of months, in case my lack-of-appetite induced dieting had caused a problem.

Within 24 hours it was very clear to me that I probably wouldn’t last a couple more months. I took a dose of iodine, you see. This had the effect of making the lump in my throat swell and become very inflamed. It was very hard for me to swallow. It actually made me hyperactive. Not in a physical sense as I was still very weak, but in the sense that I couldn’t stop gabbling on and my brain was darting all over the place. I’ve had this reaction to iodine before, which is why I avoid it!

All kinds of little clues started filling in the jigsaw. Perhaps I really have had a low thyroid all of these years, with bad patches and good patches. I have always been sensitive to food chemicals, but I think that having a low thyroid could be the reason that I’ve become a super-responder in recent years. Not because it might affect monoamine oxidase activity etc etc, but because TSH levels raise leukotriene production, and low T4 has some sort of blocking effect on calcium channels. Interestingly, salicylates lower your T4 levels, so I wonder whether removing them made a difference to my thyroid function. When you have a low thyroid, your body retains magnesium and excretes calcium. No wonder I need so much calcium to think clearly. I’ve had problems with leg cramps for years, something usually caused by low calcium status.

I don’t have hypothyroidism because I’ve been dieting, or because anything has been missing from my diet (though well-meaning but poorly informed friends have certainly offered their equally well-meaning but unhelpful opinions on that). My diet has been in response to hypothyroidism. I lost my appetite months ago. I thought it was a good thing. I started drinking tons of goat’s milk, because it stopped my heart from skipping, it completely cleared up my residual eczema, it made my brain start to work again, and it made me able to wake up properly in the mornings.

The lower your thyroid function, the more likely you are to clot. I had a DVT a few years ago, and my leg has been bothering me for at least a couple of months now, possibly as much as three. The lower your thyroid function, the lower your sex hormones. No wonder I felt like I was going through the menopause, and I’ve lost so much weight off my breasts.

I went back to the doctors to beg for thyroxine the very next day. I told her about the lump in my throat and how I had these strange attacks at night where my heart wouldn’t stop pounding. She sent off for more tests. She refused me the thyroxine until she gets the results back this Thursday. There’s a chance I have Hashimoto’s autoimmune thyroiditis you see. My white cell count wasn’t raised, but the inflammation of the lump in my throat after taking iodine is pretty indicative of Hashimoto’s, which is worsened by iodine intake. Doctors can be funny about prescribing thyroxine if you have Hashimoto’s, because it comes and goes, and taking thyroxine during a good patch can cause temporary hyperthyroidism.

So I am sat here in desperate, desperate need of thyroxine, trying to take each day at a time, even though I can’t see properly, my leg is apparently clotting, I keep crying for no reason, my concentration is shot, and it’s all I can do to drag myself out of bed. Can I make it until Thursday without going back to the doctor to beg for medication again? I don’t know, though undoubtedly making another appointment will make me look like a hypochondriac. A lack of control over my destiny is a big problem for me, and I almost feel like taking matters into my own hands and buying something from one of those dodgy online pharmacies. I’m just counting the days now, constantly worrying that there will be another delay, that I’ll have to go into hospital with another DVT before I get the thyroxine (please PLEASE no, I never want to go on warfarin again), or that the doctor will change her mind if my test results don’t add up. I really wish this wait was over.


Written by alienrobotgirl

18 May, 2009 at 10:28 am

Posted in Thyroid

10 Responses

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  1. ARG,
    That is awful! I am so sorry. Can you try to eat more of your failsafe foods? Maybe something easy and calorific…more starch, rice, or something, with a lot of butter? Eggs and cream? Safe ice cream?
    I do hope you feel better and soon!


    18 May, 2009 at 1:40 pm

  2. Hi mc1r,

    The loss of appetite is a reaction to the problem rather than the cause of it.

    I have to wait for my test results before acting. If it turns out I have Hashimoto’s, stimulating my thyroid is a bad idea as it makes the immune system attack my thyroid faster.

    I’m sure once the doc gets around to prescribing me some thyroxine I’ll get my appetite back!


    18 May, 2009 at 4:59 pm

  3. […] Edit: view the answer here! 9 comments « Food chemical intolerance medical and scientific references The diagnosis » […]

  4. ARG

    this sounds awful. Hope you get something sorted soon

    Best wishes



    18 May, 2009 at 6:00 pm

  5. My first thought actually was Hashimoto’s, since the symptoms range between hypo and hyper thyroid, but my husband says I see thyroid conditions “in everyone who has a health complaint”, so I tend to overcompensate and discount my intuition.

    I think I became mildly hypothyroid at age 29 after a particularly stressful few months, both personally and professionally, (I’m 47 yo now), but it wasn’t diagnosed for about 15 years, despite numerous but mild classic symptoms (low basal temp that the nurses used to joke about, infertility, some weight gain, extreme fatigue & sleep disruption, loss of outer eyebrows, rising TSH, serum lipid changes, dull mental processes, irritability, etc. My doc kept attributing it to age and motherhood, and wanted to prescribe meds for symptoms. My metabolism was never the same after age 29 (went from chronically underweight to always somewhat curvy in a very short time, and slightly later plump). After a period of gaining weight in my late 30s and early 40s (due to a well-used bread machine) and then restricting carbs to lose the weight and maintain at about 125 pounds, my hypo thyroid symptoms became much, much worse and my doc was no help at all. I took matters into my own hands and learned everything I could, then found a better doctor (despite the long distance and and paying out of pocket, it was worth it!). It took two years of tinkering with thyroid treatments (and doc hunting) to feel close to normal again.

    I now suspect the high gluten content in the bread machine recipes and later the soy and added gluten in the low carb pita breads I used during the first year or two of my low carb way of eating were at least somewhat responsible for the sharp increase in hypothyroid symptoms. Now I take T4 and T3 (I absolutely need some T3 with the T4 for the best function, either from natural thyroid extract or Cytomel) and am soy and grain/gluten-free (sort of primal/paleo is how I would describe my diet).

    Hope you get good treatment. It takes persistence and a lot of legwork finding a good doctor (good thyroid treatment is not easy to come in in the UK with NHS, from what I understand via various thyroid forums I read).


    18 May, 2009 at 5:38 pm

  6. “but my husband says I see thyroid conditions “in everyone who has a health complaint”, so I tend to overcompensate and discount my intuition.”

    LOL. My partner says the same thing about me! I see food intolerance symptoms everywhere. When my diagnosis of myself was reactive hypoglycaemia, I saw that everywhere… Now I wonder how many of those people have thyroid problems… I know what you mean about overcompensating. I always try and throw out ten different theories even though one theory has a big arrow over it and is blinking!

    Sometimes intuition is a good thing though.


    22 May, 2009 at 11:37 pm

  7. Hi ARG,

    “The loss of appetite is a reaction to the problem rather than the cause of it.”

    Ja, that would be the logical way of thought 😀 lol.

    I am following you results…firstly, I am very happy for you that you’re finding some of the relief!

    If you do not mind, I have some questions to inquire about your thoughts on UHT processed milks. I have many of the same patterns of symtoms you have described (especially the brain fogged reactions, and I need intense concentration for my job- computers- which has also kept my options for kcals, too, very limited at the moment…) now and previously, and I would really like to give the calcium theory a go, trouble is I am so reactive the the cow opioids and the only A2 milks here are all the UHT… 😦

    Does UHT increase a chance of amine build up which is why failsafers often have negative response? Or is it some other mechanism at play? Or do you think the surplus of calcium might alleviate/override the negative response to UHT processing of the milk anyway?

    thanks ARG!


    24 May, 2009 at 2:22 pm

  8. and, I forgot…more my jumping to conclusions ;).

    Do you think there might be a difference between yogurt and milk calcium availability? I read somewhere it is ionic vs. colloidal? But I don’t know much about this idea. Also, here we only have good A1 type yogurts (failsafe appropriate lactobacilli) and I find that they will make me have stress and make me to have irritation in my eyes and a feeling of extreme alert (which can be ok, perhaps for short term functioning)…now it just occurs to me, do you think this might be another type of neurological issue with amino acids…perhaps, tyrosine vs. tryptophan? Because, I find if I do have even Guernsey (which is A2, no?) general pasteurized milk, I feel very sleepy, which I usually attribute to the opioids, but maybe for me it is more than that….? (It too research on the internet that yogurts are suppose to have greater tyrosine vs. tryptophan). Sorry, just thinking out loud here. I suppose I need to make a more structured approach to my tests and assumptions, as a proper scientist 😉


    24 May, 2009 at 3:11 pm

  9. I’m not sure exactly why UHT milk can cause problems, but I’ve had reactions to it too, usually headachy/migraine reactions, sometimes with skipping heartbeat. I wonder whether it might have something to do with the heating changing the proteins in a way that makes opioid-peptides more available for fast absorption. Then again it could create free glutamates? But no, the negative response I get isn’t outweighed by the value of the calcium.


    24 May, 2009 at 10:34 pm

  10. I don’t know how important absorbancy is. I think the absorbancy for all kinds of calcium varies from between 28-32%, and that includes calcium carbonate, calcium citrate-malate, milk, etc. So there isn’t a great deal of difference anyway.

    I also have negative reactions to yoghurt. I dug up a study a while ago that suggested lactobacilli make opioid peptides more available for absorption and you get a faster hit from them as a result. They also mess around with your prostaglandins. Fermented milks and eicosanoid biology.


    24 May, 2009 at 10:41 pm

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