Thyroid is killing me or not: I have been seeing... - Thyroid UK

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Thyroid is killing me or not

Juletracy
Juletracy

I have been seeing a thyroid specialist for 22 years and seem to be going round in circles t3 and t4 normal tsh -28 and everytime it goes low I can't eat blood pressure all over the place fatigue muscles aching can't hardly walk can't hold my arm up can't work can't drive please help my specialist keeps telling me it's not my thyroid and that I have chronic fatigue syndrome or lupus I'm beside myself I feel so sick and the doctors just for me off and tell me its anxiety I can't live like this for much longer its absolutely destroying my life. I would appreciate some ideas as what I can do it's so debilitating and destroying my life please help

4 Replies
SeasideSusie
SeasideSusieAdministrator

Juletracy

Can you please post your thyroid test results, and so that we can get a full picture in order to help you we really need the following

TSH

FT4

FT3

Thyroid antibodies

Vit D

B12

Folate

Ferritin

Please make sure you include the reference ranges with your results, eg

TSH: 2.5 (0.2-4.2)

Also, can you tell us what thyroid medication you are on and any other medication and supplements that you take.

No worries I will post these when I get all that you need thanks seasidesusie xx

shaws
shawsAdministrator

Anxiety (or any other symptoms) if hypo I believe can be called " iatrogenic [i-at″ro-jen´ik] i.e resulting from the activity of a health care provider or institution; said of any adverse condition in a patient resulting from treatment by a physician, nurse, or allied health professional.

This is due to only TSH and blood tests being used as to whether or not we should have an increase, whilst ignoring all clinical symptoms - it is symptoms which should be relieved.

CFS, Fibro and ME were, I have read, only named about ten years after the introduction of levothyroxine and blood tests.

We have to read and learn and ask questions from members.

We should follow the advice to get the best possible results (if permitted to by GP).

Always get the very earliest blood test, fasting (you can drink water) and allow 24 hours gap between last dose of levo and the test and take afterwards.

The aim is a TSH of 1 or lower (and NO we are not suddenly 'hyper' if TSH is 1 or lower no matter what doctor says. We can, of course, be overdosed but still not hyperthyroid if we've been diagnosed as hypothyroid.

A TSH of 1 or lower and a Free T4 and Free T3 should be in the upper part of the ranges is the aim. Some need a suppressed TSH and no we wont get osteo.

thyroiduk.org.uk/tuk/testin...

In UK they rarely check the Frees and these two are very informative as you will see from the above link.

Most on this forum have found recovery through advice/help by other members as we've all been in some sort of 'no man's land' at times and wonder if we will every get better.

Your doctor probably wont do all of the following but if not and you can afford a private blood test, we have several labs that do home pin-prick ones.

You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Antibodies confirm or not whether we have Hashimoto's as it is the antibodies that attack the gland until we're hypo but treatment is the same.

Your doctor should test B12, Vit D, iron, ferritin and folate - all have to be optimal as deficiencies can also cause symptoms.

Juletracy you are not alone. Many people have been there and will totally understand how you are feeling. It does sound like it is time to change your specialist, but finding one better is doubtable. There is lots of information that will help you to help yourself. And maybe your specialist needs some educating.

I was told I had CFS -not sure if it was ever recorded on my records, likewise with depression. When I suggested that most if not all people with thyroid suffer with CF, wasn't it likely to be linked. He said he didn't think so, that he had a theory about it being something in the brain.... When I stopped T4 [for T3 only] my CF and Fibro and migraine also stopped, within days.

I too wonder just what damage T4 is doing. And wonder just who knows?

Good luck with your recovery. It is possible to gain better health with help and advice from the good people on here. All the best.

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