Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

An interesting TSH

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There are several different blood tests that doctors use to determine whether someone is hypothyroid. For example, Free T3, which tests the levels of active hormone in the blood, Free T4, which tests the levels of inactive hormone in the blood (which is converted to T3 in some peripheral tissues and the liver), and Thyroid Stimulating Hormone (TSH), which tests the level of a hormone produced by the pituitary gland with the purpose of stimulating the thyroid to produce more T4 and T3.

There is great controversy over what a “normal” TSH value is, and specialist thyroid doctors protest that there is a great over-reliance in the usage of TSH in determining whether a patient has a thyroid problem, and that many patients are going undiagnosed unnecessarily because their signs and symptoms are being ignored. There is an excellent article on TPA UK regarding problems with the current TSH range. Everyone has a different idea of what is “normal”.

The current “normal” level used by my GP’s lab here in the UK, is a TSH of 0.35 – 4.5.

I’m going back to see Dr Skinner next week. I’m currently taking 100 mcg of thyroxine (T4) (an average appropriate level of thyroxine is around 100-150mcg depending on who you talk to).  I’m also taking half a grain of Armour Thyroid (and if you haven’t heard the horrific news about what the FDA have planned for natural thyroid supplements, I suggest you visit this page and join the campaign to save it, before the FDA starts killing patients who need it).

I still have a lot of hypothyroid symptoms. I’ve definitely improved, I’m much less food intolerant – I’ve been on a bit of a chocolate binge for the last few weeks, without too many consequences apart from a slight worsening of my eczema and some heart block / palpitations. I’m back on failsafe again for now as I’ve had a few days of feeling rough. I’m not completely well yet. My energy levels have improved but I’m still not up to doing exercise. My heart goes mad whenever I run up the stairs. I often have blood pressure readings of ninety something over fifty something. My pulse has improved, it’s usually in the seventies. My cholesterol is still too high and hasn’t changed. My body temperature goes up and down like a yo-yo, which does indicate an adrenal problem – it will be within range for a few days, and then drop back down for a week, particularly if I’m under stress.

It takes a while for your TSH to settle down when you have started thyroid medication. Everyone has a different idea of how long it takes to settle – some doctors say a month, others say three. What I’ve noticed is that I tend to feel good for a couple of weeks after raising my dose, but then I start to feel rough again, as if my body is in homeostasis and responding by lowering my TSH in order to get back to the hormone level it’s used to, instead of the one it needs. Because my appointment with Dr S is next week, I needed to get my blood tests before I saw him, but I’ve actually only been on 100mcg of thyroxine for two weeks. I was feeling rough again when I went to see the GP a couple of days ago.

The GP I saw was the locum who sent me away during the swine flu crisis, telling me I was “just anxious”, without doing any blood tests on me.

We had an interesting conversation. “Does it run in your family?” she asked.

I gave her a rather simplified answer. “Yes, I’m sure my mum is severely hypothyroid, she has a lot of serious symptoms and her cholesterol is through the roof. I’m trying to get her to go to the doctor about it.”

“If her cholesterol is high, why haven’t they tested her thyroid?”

“I know, it’s ridiculous.” I agreed.

“Do you have children? It often comes on after pregnancy.” (The number of thyroid patients who are misdiagnosed with Postnatal Depression is criminal).

“No, but I’m sure the Pill made me worse.”

“You’re probably right.”

By this time, I had realised that I was actually talking to a GP who knew something about thyroid disorders, and I hadn’t had that impression from the two others I’ve seen. I asked for a repeat prescription of 100mcg tablets, as I’m due to run out before I see the good doc S. Unfortunately as they were given me by private prescription, they weren’t in her list of repeats, and she started rummaging around on the computer going through my medical records. “Why are you seeing this private doctor? Why aren’t you seeing an endocrinologist?”

“Because he’s a specialist and he has really good reviews from everyone who’s seen him. The GP I saw wanted to keep me on 25mcg of thyroxine for eight weeks and she was scared of sending me hyper.”

“You can’t rush thyroid treatment.”

“I was having anxiety attacks. They went away as soon as I went up to 50mcg.” At this point I requested she check my medical records on my request to make sure I hadn’t been diagnosed with Generalised Anxiety Disorder, which was what one of the other GPs wanted to diagnose me with (incorrectly). Fortunately there are no mental conditions listed on my record!

Then she clicked on a letter Dr Skinner had sent. “What’s this all about?”

“He’s a specialist who treats patients with prior diagnoses of fibromyalgia who are hypothyroid. I was given a diagnosis of fibromyalgia twenty years ago, and I’m sure it was a misdiagnosis. ”

“What’s this about treating patients until their symptoms go away instead of by their blood tests? No, I can’t be having this, you can’t do that kind of thing these days, it leaves you open to libel.”

Yes, that was pretty much exactly what she said. I wonder if she would notice what was wrong with that sentence if it was repeated back to her? She’s a doctor, it’s her job to treat patients, not appease lawyers.

“Well I believe that you should treat a patient until they’re better, not just go by the lab results.”

“Well you’re not a doctor.”

At this I just held my hands up and shrugged. What I should have said is, “Yes, but I’m an expert patient, and I know better than you do whether I feel well or not.”

“If your lab results are normal, you aren’t hypothyroid, you have something else. I sat on a GMC disciplinary hearing for a doctor who was treating fibromyalgia patients with thyroid hormones. You can’t do it. It’s very dangerous.”

At this point my heart sank. “I’m going to have problems here aren’t I?”

She almost didn’t give me my repeat prescription, but got herself in a bit of a tizz because it would be dangerous for me to run out of thyroid medication. She only wanted to give me seven days worth of tablets until I saw Doctor Skinner. Eventually she found the lab results indicating clear evidence of hypothyroidism and decided she could give me a repeat prescription for a couple of months worth of tablets, and 100mcg was a reasonable dose as most people end up on that amount.

She did warn me that I was probably getting my tests done a bit soon as I had not long upped my dose. She wouldn’t give me a test for thyroglobulin antibodies though. “Because the treatment is exactly the same,” whether it’s autoimmune or not. Hmm, I don’t think so. There are things I can do to calm down my immune system if it’s autoimmune. I think I’ll have to get the test done privately.

So today I went back to the doctors to collect my test results. I discovered that she had only given me a TSH test, no T4 test, no T3 test! What’s the point of that? It tells you nothing about anything except what the pituitary gland is doing, especially so close to upping my medication. Guess what my TSH was?

Remember – the normal range is 0.35 – 4.5 according to the lab they use.

My TSH: 0.03.

I guess with a TSH that low, my thyroid gland isn’t doing much right now. I expect it’s just a “settling in” anomaly, or even a mistake. It might be why I’m going through this rough hypo symptom patch, it could indicate pituitary involvement, or perhaps an adrenal problem. Who knows?

I’m going to have to go back to the GP again on Monday to get the blood tests I wasn’t given, as I think the only relevant one will be one for T3. I’ll try and get a cortisol test out of them too.

So, beware if you’ve found yourself in this situation. Your TSH may not be telling you the truth. If your doctor or endocrinologist is not paying attention to your symptoms too, you may find yourself insufficiently treated.


Written by alienrobotgirl

28 August, 2009 at 7:25 pm

Posted in Thyroid

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