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Autoimmune disease

Hypothyroid help please

10 replies

Ossoduro2 · 24/01/2024 19:13

Hi, I’ve been on 100 mcg of levothyroxine for a number of years and numbers all within the relevant ranges for tsh, t3 and t4 last time I tested (a year ago).

symptoms came back recently, general extreme fatigue, weight gain cold etc and so I went and got a GP test, I think just tsh. The GP has said I’m overmedicated and he wants to reduce medication to 75. I haven’t spoken to him, just received a message from the surgery so I haven’t been able to ask any questions.

I have tested in the past for thyroid antibodies and these have been raised so I think I have hashimotos. My understanding was that this couldn’t get better and I’d need medication for life, increasing from time to time if the condition deteriorates.

can anyone explain why the gp might think that I need to reduce medication given my symptoms?

ive had such a bad experience with this condition being dismissed as tiredness for about 5 years before I managed to get a diagnosis, I just don’t trust that it is taken seriously so I want to do my own research rather than just do as I’m told with no explanation from the Gp to justify it!

any help would be appreciated.

OP posts:
HelpNeededBeforeIHaveABreakdown · 24/01/2024 19:20

Do you have your test results? TSH should be around 1.0 when you are on Levothyroxine for Hashimoto's.

Ossoduro2 · 24/01/2024 19:21

No, they didn’t give me the results but im guessing they must be below the reference range for the GP to suggest reducing the medication.

OP posts:
Ossoduro2 · 24/01/2024 19:22

I’ve always been between 0.5 and 1 when feeling well.

OP posts:
Astridspuzzle · 24/01/2024 19:25

You could ask for a referral to Endocrinology. I had Graves Disease which is in remission. I'm currently okay in terms of FT4 and TSH but if I had hypo or hyperthyroid issues I'd ask to be referred back to the Endocrinology experts. Initially my GP tried to treat Graves and got the dose wrong. Luckily I'd asked him for a referral to the Consultants.

Panackelty · 24/01/2024 21:51

“No, they didn’t give me the results but im guessing they must be below the reference range for the GP to suggest reducing the medication.”

Sometimes, but not always, it depends on their understanding. they may actually be fine as is. You really need your results, ask for a printout or online access if they have it.

Ossoduro2 · 27/01/2024 08:58

I’ve got the results now, tsh is 0.27 and t4 is 25 so the results are out of range. None of this explains my weight gain or extreme fatigue despite a really healthy diet. I don’t really know what to do.

OP posts:
HelpNeededBeforeIHaveABreakdown · 27/01/2024 11:00

I think with Hashimoto's it is possible to swing between under and overactive. I was also told I had antibodies for Graves' disease as well as Hashimoto's! I take 75mg Levothyroxine daily and seem more stable now. Also worth considering other autoimmune issues such as coeliac and B12 deficiency.

Panackelty · 27/01/2024 11:48

@Ossoduro2
your results are similar to mine, and I’m hardly able to drag myself to work. Have you tested your FT3 which is the active thyroid hormone and most important, it might be low.
NHS won’t usually test it or discuss it so you do a fingerpick self test. The community forum at thyroiduk are great for advice on this and vitamin levels which are best to be optimal.

DopeyMum16 · 30/01/2024 17:25

I also recommend thyroid U.K. / and testing ft3 which is the active hormone. You body has to convert the thyroxine to ft3
Worth checking things like iron and folate too. And vitamin D .

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