Differing symptoms and blood results

[Tingwell78]

I was diagnosed 6 weeks ago (TSH: 27, T4: 9, positive for anti-thyroid antibodies) and took 50mg thyroxine for 1 week; this was increased to 100mg after I still felt grotty. For the last 5 week I felt like I had my life back! I've been so full of energy and able to cope with everything.

However, my last blood tests showed that I have gone slightly hyper (TSH: 0.28, T4: 28), the doctor said this is probably why I have been feeling so active and decreased my dose to 75mg. I think my doctor is great and really trust him so no problems there.

However, the last couple of days I have been feeling fatigued and a bit tearful. Can 25mg really make the difference and if so should my symptoms or my blood levels be treated. Would having a T4 level of 28 be damaging in the long run? Anyone had any experiences of being nicely hyper?

Katie x

[helvella Administrator]

Katie,

If you trust your doctor with your bank account, your car, your job, fine. I wouldn't argue. But never trust a doctor with your thyroid. I've lost count of the people who have lost all faith in their formerly trusted doctors over this one issue. After all, somehow or other while under his care you managed to have a seriously raised TSH/low fT4.

The turnaround in your fT4 level with the seemingly modest 100mcg dose is dramatic. And concerning. Yes, a fT4 of 28 would be damaging long-term. High thyroid hormone levels are associated with heart problems such as atrial fibrillation. You need more thorough investigation.

Yes 25mcg a day can make a considerable difference. Do remember that you can adjust the dose by less than 25mcg - for example alternate 75 and 100. Or split tablets to get to 87.5.

It is very common for people to end up on a roller coaster for at least a while after commencing medication. Start and feel wonderful, then crash.

Have you had your vitamins B12 and D checked? How old are you? Have you got relatives with thyroid issues - or other autoimmune diseases?

All the best

Rod

[Tingwell78 in reply to helvella]

Hi Rod,

I'm 32 and haven't got any relatives with thyroid issues. I haven't had my B12 and D checked, why is this important? I need to get reading judging by the comments on this site! Thanks for the advice, I'm a bit of a newbie to all this.

[helvella Administrator in reply to helvella]

A large proportion of those with autoimmune thyroid disease have some degree of problem absorbing sufficient B12 from their diets. (Something like 20-40% from memory.) So it is reasonable to check - but even if that looks OK, it is arguable that regular supplementation may be required.

Vitamin D is a complex area - but start by asking your GP for a test.

On the relatives issue, have you got any with any other autoimmune diseases? Very commonly there are even if none actually have thyroid issues.

And I agree with the not taking your thyroxine before a test. That could indeed help to explain the extraordinary apparent rise in T4. The one and a half hours you mention would probably be the absolute peak. Another time, take your thyroxine with you and take it straight after the blood draw.

And you are so right - do get reading. But at least you are taking an interest which is a necessary first step.

Rod

[Chippysue]

Katie, First of all I wanted to say how fortunate you are that you had such a speedy improvement. Most people can take several months to feel any improvement and some of us cannot find the answer at all.

Do you know what your lab range is for your Free T4? you levels look ok to me (I am not medically qualified).

I have read about the possible damage to our hearts if we are left undiagnosed with thyroid disease but doctors don't seem to agree with this.

Personally I will not take notice of my blood test results, my aim is to feel well and for over 4 years I have seen 7 specialists and feel frustrated as Endocrinologists are only interested in your blood test results, well as far as I am concerned I am starting to improve and there is no way that I will lower my dose of medication and go back to feeling like death.

75mcgs of levothyroxine is quite a low dose, have a chat with your GP and explain that you felt better on the higher dose. I am sure that folk who are hypErthyroid will tell you that they haven't got bags of energy, it doesn't work like that, they suffer with many of the hypOthyroid symptoms.

When you have your blood tests, have the blood taken as early as you possibly can (I go to my local hospital with a blood form at 8am) as your TSH is at it's highest around 3am and gradually goes down. Also on that morning take your tablets after they have taken the blood.

[Hidden]

Katie,

Has the doc considered the possiblity that your thyroid is under attack and putting out more hormones temporarily? This often happens and people can be treated appallingly in the doctors misguided efforts to increase the tsh.

Did you remember to not take any meds for 24 hours before your blood test? This is because if you take meds before a test the levels in the blood are falsely high and you get a skewed reading.

In 20 years I've never managed to get a tsh as high as 0.2. Mine is always at 0.1 or less. Never had a doctor panic about it, well, ok, there was one, but I ignored him. I've got healthy bones and no heart problems.

Nel.

[Tingwell78]

Thanks for the comments below, I'll go back to the doctor. I had no idea that you are supposed to have your bloods done before taking the medication. I did ask the nurse if it would be OK to take it and she said it was fine. I actually took it at 7am and had my blood test at 8.30am. Could this be the reason my fT4 levels were 24?

Katie x

[Hidden in reply to Tingwell78]

Yes, it surely could be the reason.

It was Professor A Weetman (ex president of the British thyroid association) who said not to take the meds before a test.

I think you should search the references and see if you can find the article before you see the doctor. It was said on about the 4th day of the Dr Skinner GMC hearing.

Nel.