Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

Those test results…

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So, where were we?

Oh yeah, I thought my adrenal glands were on their way out. Well, guess what? They’re not. The reason I’m still unwell is a combination of three different medical conditions, two of which I’ll tell you about, and the other of which I’ll ruminate on, as it hasn’t yet sunk in.

Remember me pleading with my GP for a series of tests? I asked for cortisol, B12, folate, vitamin D, magnesium, calcium, copper and zinc. I got cortisol, after a long drawn out battle. The rest of the tests were apparently not required. The cortisol came back okay, but due to the circumstances of the test, I thought it might be a false negative, as it’s notoriously hard to catch adrenal problems in the act.

So I went to a private GP in Sheffield and paid around £500 of my own money. I got a whole series of tests done, the ones above, plus ones for progesterone, oestrogen, DHEA, testosterone, and thyroid hormones.

I was pretty disheartened when the results came back. Everything was normal, according to the phone conversation. I actually delayed going to collect the test results for a few days. When I arrived, it turned out that not all of the tests had been done. They had forgotten to do the thyroid tests. This was unfortunate, as I had put a natural desiccated thyroid (NDT) tablet (Westhroid, I’ve stopped taking Armour) under my tongue about twenty minutes before, and the last few grains were left in my mouth. Had I been thinking straight at the time, I would have refused the test and come back the next day, but I wasn’t thinking straight, I was in a haze.

While my blood was being drawn, I leafed through the results of my other tests. I noticed that folate was missing – the dear sweet old doctor had accidentally asked for follicle stimulating hormone by mistake, since I was having sex hormone tests done. I asked about the missing test, and learned it would cost me another £50 to have it done. I was so disheartened by how GREAT all my test results looked that I almost didn’t bother to have it done. But I did, thank goodness.

Taking a closer look at my test results at home showed everything in range – my cortisol was around 300 again (the normal range is about 100-800), and this time I hadn’t been nervous when the test was taken. So I guess that either the saliva test was wrong, or it reflected the situation at the time – and as Dr S believes, my adrenal function picked up as my thyroid function picked up.

My progesterone is a little on the low side – it’s normal, but low. This might be something I investigate further in the future, but it isn’t my priority at the moment.

All of my nutritional tests looked really great or good. Copper, zinc, calcium and magnesium were right at the top of the range, and B12 and vitamin D were mid/low range. Considering I had been to Mallorca on holiday only a month before the vitamin D test, I was disappointed. The B12 was disappointing too, as I’ve been taking pretty large (250mcg) doses of B12 for six or seven months now (small by some people’s standards, but any more than that and I start getting hypnic jerks).

I suspect that before I began supplementing my B12 must have been quite low, as I had many acute symptoms – such as the annoying dysautonomia – being able to feel my heart beat – was something that cleared up shortly after I began taking B12.

This second round of tests I got back were very revealing. Firstly, my thyroid test came back totally screwed up. You aren’t supposed to take a tablet on the same day as your test, and I had taken two, with one that had dissolved straight into my bloodstream from under my tongue only a few minutes before the test.

The thyroid test looked like this:

Thyroid Stimulating Hormone: * 0.01 mIU/L (lab’s range: 0.27-4.20)
Free Thyroxine: * 42.3 pmol/L (lab’s range: 12.0-22.0)
Free T3: * 11.7 pmol/L (lab’s range: 4.0-6.8)

Those are cracking levels, aren’t they? I wasn’t amused at the time, but I find it quite funny now!

Though the test result made me look like I was about to die of a heart attack, I think I might have been just a little teeny tiny bit thyrotoxic – not a huge amount, but a little.

The folate test looked like this:

Folate (serum): 3.3 ug/L (lab’s range: 2.3-17.6)

It was just inside the lab’s range, but when I had a look online, it turns out that their low is quite low, other labs set the cut off to 2.7, 3.0 and 3.5. So, by some labs’ definitions, folate deficient, by others, not. Folate deficiency can give you pernicious anaemia. It isn’t very nice at all.

I don’t get on with folate, or I didn’t. It used to make me manic and then give me brain fog. I used to need more and more of it to feel normal. It was like the worst drug in the world. I suspect now that the reason I had this reaction to folate, is because I was B12 deficient, and folate and B12 both use each other up. You aren’t supposed to take folate without taking B12, because B12 deficiency is very serious.

Having had a lot of problems breathing, having become more and more tired, yet suffering from chronic insomnia, and if I’m honest, suicidal depression, and having the sensation of feeling my own heart beat return, I decided to risk taking folate.

My reaction to folate has completely changed. I basically went from being exhausted, groggy, insomniac, depressed and feeling my heart beating one day, to being awake, not feeling my heart beat, and sleeping well the next day. No manic feelings, no brain fog, no worsening of symptoms. I think that my B12 levels are high enough, and my thyroid hormone is also high enough now that I can handle folate: the only thing I do get from a VERY large dose (e.g. over 1000mcg) is a little rashiness sometimes.

What was really shocking was that as soon as I started taking the folate I suddenly started getting symptoms of thyrotoxicity. I got what is called a thyroid “dump”. Folate, B12, magnesium, vitamin D, zinc, copper and iron are required to push thyroid hormones into cells. If you can’t push thyroid hormones into your cells, they build up in your blood and you get crazy blood test results like mine. I didn’t even know this was possible – it is in fact just theory – a thyroid dump reaction is known to happen to people with low cortisol levels when they start supplementing hydrocortisone. Apparently it appears to be the case with me too.

By this time I was taking 2 grains of NDT and 75mcg of thyroxine, and it didn’t seem to be having any effect – until I started taking the folate. I was still ill from folate deficiency – tired, short of breath and so on – but now I had a heart beat that at resting was around 95-100bpm and when I had to walk anywhere (and by walk, I mean a gentle stroll), well, I was doing up to 170bpm – possibly more, but I was too scared to actually take my pulse!

I basically had to stop taking NDT for a day. I felt absolutely fantastic that whole day, then I started to get my hypo back pain symptoms back when I woke the following morning. I resumed at a lower level of 1.5 grains NDT and 75mcg thyroxine. I learned I couldn’t take my folate pill near my thyroid pill, or off I’d go with a crazy pulse again! I had a fast heart beat (I can’t really call 95bpm palpitations) on and off for a couple of weeks, but I think it’s pretty much settled down now – after another dose shift, of 1.25 grains NDT and 100mcg thyroxine (see what I did there…?).

I went to see Dr S about my test results. He was astonished by my thyroid results and wouldn’t accept them. “But this means the blood test can be totally disrupted!” he exclaimed. He sent a letter to my GP, asking for new tests after three weeks for folate and thyroid, including RBC this time, though if I was slightly anaemic, I think after three weeks of folate, what was borderline will no longer show.

So, I’m a little (lot!) pissed off with the GP because I’ve had to spend all of this money when by rights I should have been able to get all these tests on the NHS, but I’m also feeling pretty confident, because I know how to use this situation against them now. Let’s hope they will be more cooperative next time.

In addition to all of this going on, I’ve been suffering from sinusitis. When I first started getting dizzy after I mucked with my thyroid meds back in September, I was terrified my adrenals were going down the pan. It turns out that taking NDT is playing havoc with my sinuses – on the day I upped my dose to 1 grain and I started to get really dizzy… It was a very stealthy sinus infection! I had no pain or pressure or other infection symptoms apart from tiredness and shakiness, which could have been anything! I think the reason I got the feeling like I was going to black out every time I stood up, was because my blood pressure was too low as a result of stopping the T4. Possibly the infection and the change in dose was putting a strain on my adrenals too. Whatever was going on back at the start of all of this, I’m pretty sure my adrenals are okay now.

It was weeks before I finally got pressure pain in my nose, and what a relief that was! I can’t convey to you the “OMG it’s a sinus infection!” moment. The sinus infection has been going on for three months now. I can’t shake it. I’ve tried OTC remedies, four rounds of antibiotics – which are keeping it at bay but not killing it – the difference between me on antibiotics and me off antibiotics is the difference between alive and dead. I’ve tried steroid nasal spray – which spread the infection over the course of three days until it moved right down into my cheeks – I’ve tried two courses of amoxicillin clavulanate, followed by two courses of doxycycline back to back, which I’m just about to finish, and the damned infection is still there. I’ve tried steam inhalation, I’ve tried neti pots… The good news is that all of those antibiotics plus a great deal (too much?) thyroid hormone have finally killed off the eczema on my face, and I look as fresh as a daisy! Pity I don’t feel like one!

I’m off for those three-week blood tests in a few days time, plus I’ll be begging for a referral to an ENT who will hopefully look up my nose and discover I have polyps in my sinus cavity or a deviated septum or some other reason why I can’t drain the infection, since I’ve had problems breathing through my nose for a long time.

I don’t know WHAT the thyroid test will say, because I currently feel both under and over. On the 100bpm inducing dose I was on, I felt extremely tolerant of foods and got adventurous (by this I mean eating junk food), started trying all sorts of things (junk) without getting symptoms the next day. However, I was a bit mental – emotionally volatile again. When I lowered the dose to slow my heart beat down, my food intolerance symptoms and pain came back. I had a crazy drunk-person reaction to some smoked salmon!

I still have quite a few symptoms – but I do feel a lot more energetic than before. I’ve been able to do some DIY around the house. My (rather strange) yardstick for getting better was this: if I’m up to decorating the house, I’m well again. I’m not quite up to decorating yet, but I’ve certainly done a few big butch DIY tasks – though I have to sit down and have an asthma attack and a heart attack after any heavy lifting!

Probably the most annoying symptom I still have is with problems breathing. This symptom has been coming and going, and responds to thyroid dose changes, B12, folate, and quite possibly has something to do with this damned sinus infection that’s making me feel so unwell.

Then of course, there’s the other problem. I did another test this week, and I still can’t quite believe the results. No, I’m not pregnant, it’s not a good news test at all! I’m not going to say what it is yet. I’ll post my symptoms once I’ve been to see the doctor, and you can do your Dr House impression on me again. Until then, au revoir…

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Written by alienrobotgirl

28 November, 2009 at 11:24 pm

Posted in Thyroid

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