Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

Another false lead, and a possible answer

with 8 comments

I really should post more often. One of my New Year’s resolutions was to write every day. So far that hasn’t been happening, mainly because I can’t see very well at the moment. I’ll get to explaining that in a moment.

So the last time I posted, I had a test result I needed confirming by the doctor. I was going to do a Dr House here and ask people to guess what was wrong with me. Things changed and got in the way. My mum died and this blog became utterly unimportant to me. Instead of doing the Dr House, I’ll just explain.

I’ve been very sleepy – falling asleep whenever I sit down on the sofa. I’ve also had a lot of trouble with blurred vision and tired, bloodshot eyes. Also I’ve been peeing more than usual, and I’ve been hungry and thirsty.

I decided to dig out the blood sugar monitor I bought a few years ago when I was suffering rather badly with hypoglycaemia.  The blood sugar monitor claimed I was prediabetic. I tested for several days in a row, and it still claimed I was prediabetic. I got new test strips, and the new test strips claimed I was prediabetic. So I asked the doctor to confirm with a blood test. The blood test said I was normal – right at the top of the range, but normal. So I asked for a second blood test. That also claimed I was normal. So I went out and bought a new blood sugar monitor. The new blood sugar monitor said I was normal. I guess my old blood sugar monitor was broken!

So what the heck was going on?

I was actually thyrotoxic again, despite lowering my dose. Apparently it takes a lot of thyroid hormone before my heart rate goes up, I get a raft of other mysterious symptoms first. I’ve decided that the way I know whether I’m thyrotoxic or not is if I start to get sinus pressure pain. Fortunately the sinus infection has cleared up, but I’m pretty sure the infection was caused by thyrotoxicity swelling my sinuses in the first place.

The problem is, I haven’t been able to stabilise my dose. Over the last few weeks I’ve repeatedly had to lower it. On the new dose I’m okay for a few days, then I start to feel thyrotoxic again and I have to lower it again. This has accelerated over Christmas. It seems to be associated with eating gluten, even on a daily basis, though I can’t be sure.

The last two nights I’ve been down to 50mcg of thyroxine and nothing else. This dose wasn’t even touching my symptoms six months ago. In fact, I’m toxic again today for no reason, and I’m contemplating not taking a dose at all tonight.

This has changed everything. I think the stress of Christmas, and losing my mother in early December, has taken its toll on my immune system, and I’m under autoimmune attack.

The good news is, since approaching the right dose, I’ve had a lot of high energy days. I seem to be quite a hyperactive person when my body provides me with energy. However, I’ve also had a lot of brain fog days where I’ve messed up by going either too high or too low with my dose. It’s a guessing game, and I’m playing almost blind. If ever there was a case for a home thyroid monitor, I would be it. Why don’t they exist? I’m furious that they don’t exist! I’d willingly pay £1000 for a home thyroid monitor right now!

I had a high energy day on Saturday, so I went into town to do some shopping in the January sales. While I was there, something horrible started to happen. I could feel my thyroid swelling up. I could hardly swallow or talk. When I got home, I looked in the mirror and I could actually see my thyroid – the butterfly shape of it was distinct in my throat. Today I’ve been thyrotoxic again. My eyes are hurting, dry and blurry, I’m a little short of breath, and I have pressure pain in my sinuses.

The thing is, I’ve had these symptoms before. I’m not talking about this year, I’m talking about, for YEARS. I’ve always put the random lump in throat symptom down to “anxiety/low blood sugar”, the eye symptoms down to “perhaps I have a slight eye infection”, the shortness of breath down to “asthma” and the sinus pressure pain and grogginess down to “perhaps I have a cold.” It’s quite disturbing to realise how long this has been going on, and I have always dismissed the symptoms as an infection or something unimportant.

Looking at my symptoms, I’m worried that I may have thyroid eye disease. If this is so, it’s rather important to get it diagnosed and under control (ironically with steroids), as it’s autoimmune and can destroy your sight. I’m not terribly happy about this possibility. Sight is the one sense I really need in order to become that famous author I’ve always wanted to be, and I don’t know what I’d do without it.

It’s also possible – probable I think – that I have hashitoxicosis. I may be under a very strong Hashimoto’s attack, or I may have a combination of Hashimoto’s and Graves disease autoantibodies, causing periods of hypo- and hyper- thyroid symptoms.

Right now I don’t have any other explanation for what is happening with me other than autoimmunity. I was convinced from the start that this was autoimmune because of my crazy up-and-down health history.

Yeah, I know how important vitamin D is for autoimmunity, and I’ve been sitting in front of my UVB light every day or every other day.

I’m going to the doctor again, hopefully tomorrow, to ask for a full autoimmune thyroid panel. I only had TPO checked last time (Why? I was even tested for lupus, but not a full thyroid antibody panel!). I’m pretty sure that at the time of testing, I was withdrawing from an autoimmune attack, and that’s why I didn’t test positive for antibodies, and why I was becoming increasingly hypo after feeling very good – unusually good – over the winter after catching the dreaded Yersinia. Oh yeah, and this has started happening since I started eating gluten again.

I have some good news on the food chemical intolerance front. I’ll save it for its own post in a moment…

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Written by alienrobotgirl

4 January, 2010 at 12:04 am

Posted in Thyroid

8 Responses

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  1. Hi iggabod. You can find all the info you need on http://www.plantpoisonsandrottenstuff.info.

    alienrobotgirl

    17 May, 2010 at 8:50 pm

  2. It’s took me 20 years to find out what was wrong with me, after getting misdiagnosed with ME/fibromyalgia. I did failsafe for about three years before discovering the thyroid connection. I am now 90% well, though my hormone levels fluctuate which can make me feel ill.

    The links to the food intolerance proof are on the homepage, Sue Dengate’s site, the RPAH, and the medical papers on Cite-U-Like.

    alienrobotgirl

    17 May, 2010 at 9:25 pm

  3. UK

    alienrobotgirl

    17 May, 2010 at 9:33 pm

  4. I just read some of your articles. Oh why didn’t I find them before. I am allergic to citric acid (or as you say food chemical intolerance. I have had this a long time and have been fighting with docs a long time and none of them believe it. I’m in Canada. I am down to less than a handful of foods that I can eat without reacting.

    I NEED to know where you got all this info. I NEED to find some contacts to discuss this so I can show docs here – I need proof. Things are getting worse.

    I hope you still read here.

    iggabod

    17 May, 2010 at 8:47 pm

  5. thats the site i was at that brought me here. i read that but there was little of actual resources.

    how long did you go through this before getting answers? how did you arrive at that point?

    iggabod

    17 May, 2010 at 9:04 pm

  6. Where are you located?

    iggabod

    17 May, 2010 at 9:31 pm

  7. 20 years is a long time! I had orange intolerance since a kid,. but it got worse. the worst of it has only been 7 yrs. I’m glad I found your site then. hopefully this works for me too.

    Now to find a Canadian doctor with a brain….

    iggabod

    17 May, 2010 at 9:35 pm

  8. Mary Shomon’s site is very useful for finding good thyroid doctors: http://www.thyroid-info.com/topdrs/

    alienrobotgirl

    18 May, 2010 at 1:32 am


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