Puzzling results

[Edwi]

Advice please? I had a very bad bout of labyrinthitis in July and was on Stemetil medication for 6 weeks, then Serc for 4 weeks. After the labyrinthitis symptoms had gone and I could stop these medications, I began to have symptoms which I think are hypothyroid...extreme fatigue, weakness in muscles, headaches, mood changes, deep anxiety, tight chest/breathlessness...and more.

I had a thyroid function test on 10th September...it wasn't a fasting one.

TSH 0.57 T4 17.4 Of course my GP thinks that is ok. But I still feel dreadful. I then asked for another test to check vit D, ferritine folate and B12. My vit D was only 41 so I'm taking a supplement now....the others were fine.

I've now had another thyroid function test 14/10/19 ...this time fasting...and my TSH is down to 0.16 but T4 is still 17.5. My symptoms are getting worse.

I'm seeing my GP tomorrow to discuss this. I would like my T4 to be much higher, but I'm pretty sure my GP won't agree with my request to take a bit more levthyroxine. I'm currently on 150 mg per day. I'm going to ask to be referred to a thyroid function consultant.

Why would my TSH go down but my T4 stays the same? I feel my current symptoms must be due to my thyroxene intake being inadequate, but my GP thinks it's more like a post viral fatigue, or a result of labyrinthitis causing lack of confidence etc.

I'm grateful for any advice. Thanks.

[greygoose]

What time of day did you have these two tests?

[Edwi in reply to greygoose]

The blood test on 10/09 was 9.30am. Not fasting and I had taken my levthyroxene that morning.

The test on 14/10 was at 9am, after fasting. And I hadn't taken my levthyroxene that morning. Took it immediately after the test.

[greygoose in reply to Edwi]

So, in fact, your FT4 has gone up quite a bit, which would account for the difference in your TSH.

[Edwi in reply to greygoose]

No. My T4 stayed the same over the two tests. It was 17.4 then 17.5. But my TSH went from 0.57 to 0.16. Could the difference be because I hadn't taken my levothyroxene the second test and also fasted?

But why would my T4 stay the same?

I've been on levothyroxene for 25 years and it's been okay, but I'm wondering if the shock to my system of stemetil and labyrinthitis...and I am now 78...if somehow my gut absorption of levo has decreased or my body just suddenly not so good at converting to T3.

Hoping I can convince my GP to let me take more levo but with a TSH of 0.16, I don't think he'll agree.

I had Dr Toft as my consultant all those years ago and he always said it was whatever dose of levo the patient feels well on which is the right dose.

[greygoose in reply to Edwi]

No. My T4 stayed the same over the two tests. It was 17.4 then 17.5.

Yes, I realise that. And it's the fact that the two results were almost the same that makes me say your FT4 has risen. Because taking your levo before the blood draw makes quite a difference to the results. So, the first result was a false high. But, the second, where you didn't take your levo, was a true high. The fact that they were the same means that your FT4 has risen. You see what I mean?

But my TSH went from 0.57 to 0.16. Could the difference be because I hadn't taken my levothyroxene the second test and also fasted?

Taking your levo before the blood draw doesn't have any effect on the TSH, because it doesn't move that fast. So, it wasn't that.

Eating before the blood draw makes your TSH drop, not rise. So it wasn't that, either.

For me, it was that your FT4 has risen that caused the TSH to drop.

my body just suddenly not so good at converting to T3.

You'd have to have your FT4 and FT3 tested to know how well you convert. But that has nothing to do with the above results.

If your doctor doses by the TSH, then he is doing it wrong.

[Edwi in reply to greygoose]

Oh I see what you mean. That my last blood test is a true reading of my T4. So it has actually risen since my August test.

This is a new GP ( I moved house last year) so I don't know how he will view these results. I'm hoping he'll listen to how I'm actually feeling and decide on my levthyroxene dose from that, rather than from my TSH result.

Given that I have a lot of hypothyroid symptoms, I'd have thought a slightly higher dose of levothyroxene would be the best dose?

Thank you for your help...much appreciated.

[greygoose in reply to Edwi]

Depends how well you convert. Might be that you are a poor converter, and that's why you still have symptoms.

[Edwi in reply to greygoose]

Do you know if it's possible for a person's conversion efficiency to change with long term use of levothyroxene? I think I read somewhere that can happen.

Over the last 25 years, I've been largely okay on levo, with only a hypo blip about 6 years ago, when my normal 150mg dose had been reduced to 125 and I had hypo symptoms. Once my dose went back up to 150, I was okay again.

So this current situation of really debilitating hypo symptoms has just come out of the blue. I don't know why the 150mg dose seems now to not be enough. The only difference in my life, as I said, was the bout of acute labyrinthitis 4 months ago and the medication I took for it.

[greygoose in reply to Edwi]

I think it can, yes. Conversion can also decrease with age, I think.

But, hypo is likely to get worse anyway, with time. You can't realistically expect to stay on the same dose all your life and expect to feel just as good.

[Edwi in reply to greygoose]

I'm hypo because I have Graves Disease and I had a sub-total thyrodectemy in 1976, but after pregnancy I became hyper-active again...years on carbimazole, became allergic, then years on propylthiuricil, then finally the radio-active iodine in 1998. I've been on levo ever since, with the dose settling at 150mg.

I did go up to 175 about 8 years ago, because of blood tests, but became hyper...and saw a thyroid specialist who took me back to 150mg and said that there had been a fault in a particular brand of levo which had skewed things here for a lot of patients ie in Glasgow.

Thank you for your help. All I can do, I think, is to try to get my GP to understand how awful I am feeling...and how every symptom I have is a symptom of hypo...and that taking a bit more levo will surely help. I'll also ask to be referred to the thyroid consultant and ask for a more extended thyroid function blood test, including F3.

I hadn't thought previously about how hypo is likely to get worse with time. Now that I think about it, I probably have had hypo symptoms for the last 3/4 years, tiredness, feeling the cold, breathless, increased anxiety etc etc, but I put all of them down to old age. But right now the symptoms have become a great deal worse.

It's not the easiest thing to be assertive when feeling crushed by hypo-thyroid symptoms, but getting clearer about my recent results, thanks to your help, will surely help.

[greygoose in reply to Edwi]

I did go up to 175 about 8 years ago, because of blood tests, but became hyper

Well, you can't actually become hyper if you have no thyroid. You could have been over-medicated, but on what grounds did he decide you were? I don't see what a fault in the levo had to do with it.

Could be that you've needed that 175 mcg all this time, and it shouldn't have been reduced.

[Edwi in reply to greygoose]

Yes I'm now thinking it's very likely I have been under-medicated all these years. Hopefully I'll feel better on a bigger dose of levothyroxene. I'm going to say that tomorrow to my GP.

Thanks very much for all your help.

[greygoose in reply to Edwi]

You're very welcome.