Massively under medicated since thyroid removal... - Thyroid UK

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Massively under medicated since thyroid removal, finally a consultant who listened.

Cath1978 profile image
6 Replies

I finally had an appointment on Friday with a private consultant who I can only describe as a breath of fresh air.

She dotted all the i’s crossed all the T’s and has given me a direction to travel along which is heading forwards.

When I first had my thyroid removed and discharged within 6 months I was on 75mg of Levo, she was horrified by this and has now upped me to 150mg to try and get me back on track. She looked at my bloods and asked why the hell I wasn’t on T3 as this was also very low and I explained that two endocrinology departments had refused to see me which again she was horrified at.

After looking at my B12, folate, Ferritin and other bloods she also said that my body was basically in system failure and I needed to be heavily supplemented to regain balance.

Her conclusion.... I have been under medicated and misdiagnosed for such a long time that this has caused me to have ME and she wasn’t sure how the hell I’ve held down a job and functioned properly since my first symptoms back in 2016.

She believes that now we have a diagnosis and a plan that with my mindset, her knowledge and the team of people she works with that I will get better but the process will be slow and may take 2-5 years before I get my life back to normal.

I feel angry that all this could have been avoided had I been given the right medication to start off with yet so relieved that finally someone listened, told me I wasn’t going mad and has given me hope again. I’m just glad I never gave up and thanks to a lady on here who recommended this consultant to me I now know that the future looks bright again.

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Cath1978
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6 Replies
Fruitandnutcase profile image
Fruitandnutcase

So good to hear a success story like yours. The relief at find8ng s9me9ne decent must be quite something.

Your new endo sounds amazing so you need to send her details to Dionne at

tukadmin@thyroiduk.org

greygoose profile image
greygoose

Just one thing bothers me, here. Did she really increase your dose from 75 mcg to 150 mcg in one go? If so, that is very wrong. Increases should only be 25 mcg every six weeks, and doubling your dose like that will put enormous stress on an already stressed body.

Cath1978 profile image
Cath1978 in reply togreygoose

No no my dosage has been steadily increased since October as myself and the GP decided to see if it made any difference as no one was appearing to want to help and we had got it up to 125 before seeing her. 👍🏼

greygoose profile image
greygoose in reply toCath1978

Ah, ok. That's a relief! :D

Kitten44 profile image
Kitten44

That's great news. Definitely pass on the details to Dionne for the list of good endos. May you have a swift recovery and please keep updating us with your progress! :-)

pennyannie profile image
pennyannie

What a relief for you - it's a slow build but at least now you have an endo with a capital E for excellent - good news at last.

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