Wondering if anyone else has had my problem? A... - Thyroid UK

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Wondering if anyone else has had my problem? And if so what caused it

Topbanana44 profile image
7 Replies

Hi, I was wondering if anyone understands what's going on, I have had an underactive thyroid for 16 yrs, was on 200mg levothyroxine then 3 years ago my doctors reduced it to 175 mg and the next year 150mg, due to my tsh being 0.2.

I felt more tired and cold but they wouldn't put it up, I was tested last year and I was fine as far as they were conserned even though I was suffering with depression.

This year I have really struggled big time, work and sleep is all I'm capable of and that's a struggle. My test results were bad at the beginning of this month:

Tsh 28.4

T4 11.2

T3 2.5

I have changed nothing 're my meds or lifestyle except giving up smoking in January. Any ideas of the cause?

From Sarah

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SeasideSusie profile image
SeasideSusieRemembering

Topbanana44

You need to add reference ranges to your results so we can interpret them properly.

It's very obvious that your TSH is very high and it could be that your FT4 and FT3 are below range.

If these are results from tests done at your surgery, please make an urgent appointment, point out that you are seriously undermedicated and ask for an immediate increase in your Levo, 25mcg now, retest in 6 weeks, another increase of 25mcg if necessary, retest 6 weeks later, and repeat until your levels are where they need to be for you to feel well. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well.

Have you had thyroid antibodies tested - Thyroid Peroxidase (TPO) and Thyroglobulin (TG)? If not then ask for them to be done, you may only get TPO through your GP but that would be a start. Also, ask for Vit D, B12, Folate and Ferritin. Come back with the results for further comment.

Topbanana44 profile image
Topbanana44

Sorry they have put my medication up too 200mg .

Ft4 ft3 that was tested, I have asked before for my antibodies to be checked in the past but they will not do it as they said it only needs doing when your first diagnosed!

They only normally test tsh.

Just trying to understand what would have caused this, I still feel no better after 2 weeks of been on 200mg.

Regards

Sarah

eeng profile image
eeng in reply toTopbanana44

It takes up to 8 weeks for the new level of thyroxine to build up in your body, so you should continue to feel an improvement as time goes by. This is another example of someone who has been made ill be a doctor slavishly dosing by TSH result.

in reply toTopbanana44

Not sure as I'm still new to this, but I think antibodies fluctuate a lot as well as TSH. Were your antibodies tested at the beginning?

Topbanana44 profile image
Topbanana44 in reply to

Yes I did have them tested 16 yrs ago, but not since and when I have asked recently the gp said it only needed doing when I was first diagnosed!

They only tested TSH.

I work in a hospital and got one of the doctors to take my blood and I did the form and added ft4 and ft3 to the form. Wish I had put antibodies on too.

Good news though my energy has increased today and I'm feeling like me again 😊, will make the most as I know I will Plato in a few weeks time.

Regards Sarah

in reply toTopbanana44

As eeng said, It can take a while for any increase to have an effect. With the twice I've had increases so far it's taken a couple of weeks to begin to feel better, then after about 2-3 more weeks I've been less well - apparently a sign of needing another increase.

DippyDame profile image
DippyDame in reply toTopbanana44

Another sorry tale of shockingly poor care,by doctors who are clueless about thyroid matters!

Post these ft4 and ft3 results for advice, you can ask the surgery to give you a copy.... but they will still not provide enough info.

Seaside Susie has given you excellent advice....suggest you follow it. These tests will also indicate whether or not you are adequately converting T4 to T3 and whether or not you have Hashimoto's.

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