My endo says only take carbminazole for a year - Thyroid UK

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My endo says only take carbminazole for a year

Kenzie12
Kenzie12

Hi all I been on carbminazole for 10 months I saw my end last month who said I either need my thyriod removed or radioactive treatment which isn't a option for me ..he said that he only wanted me on tabs for a year as long term they will destroy my immune system eventually so looking long term that's not a option either...my weight as raised 2 stone plus in 10 months since diagnosed with hypo...he also said after a blood test I didn't have antibodies which I don't understand what will happen....he said my thyroid enlarged & has nodules on it? ....any help explaining all this to me please ...my endo has written to a surgeon waiting for a appointment..cheers

16 Replies
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Check that your Endocrinologist is a thyroid specialist and not a diabetic specialist. Also get a copy of thyroid test results including any thyroid antibodies tested and make sure results include the lab ranges. Then post them here for best advice.

Kenzie12
Kenzie12 in reply to Nanaedake

Ok thank you will I be able to get results from my doctor or the hosp....I haven't another appointment until Nov with him

Nanaedake
Nanaedake in reply to Kenzie12

Where did you have the tests done? If at the hospital then ring his secretary and ask for copy of results. If at GP surgery then ask for printout of results or register for online enhanced access to blood test results.

You should be able to check doctors specialism via a Google search. If he's a diabetic specialist I would ask for second opinion from a thyroid specialist.

Kenzie12
Kenzie12 in reply to Nanaedake

Thank you very Mich I will get that sorted & let you know

Nanaedake
Nanaedake in reply to Kenzie12

Check that all thyroid antibodies have been tested. TRAB and TSI to rule out Graves hyperthyroid disease and TPO and TgAb to rule out Hashimotos thyroiditis. I don't know anything about toxic nodule. Ask the specialist to clarify your diagnosis.

SeasideSusie
SeasideSusieAdministrator

Kenzie12

...my weight as raised 2 stone plus in 10 months since diagnosed with hypo...

You've been on Carbimazole for 10 months? You were diagnosed with hypothyroidism 10 months ago? Is this correct? If you were diagnosed with hypothyroidism (underactive thyroid) you should have been prescribed Levothyroxine. Carbimazole is prescribed for overactive thyroid which should be confirmed by testing TSI and TRab antibodies.

he also said after a blood test I didn't have antibodies

Which antibodies were tested?

Thyroid Peroxidase (TPO) and Thyroglobulin (TG) or

TSH receptor antibody (TRAb) and Thyroid stimulating immunoglobulin (TSI)

As mentioned, you need all your test results with their reference ranges, post them here and members will help.

Marz
Marz in reply to SeasideSusie

Sounds like another mis-diagnosis. This is getting scary :-( We should be campaigning for better GP understanding it seems ...

SeasideSusie
SeasideSusieAdministrator in reply to Marz

It is indeed Marz, you have to wonder why we're hearing so much of it lately, very scary :(

helvella
helvellaAdministrator in reply to SeasideSusie

Maybe one of my very recent posts would be of some interest?

healthunlocked.com/thyroidu...

Marz
Marz in reply to SeasideSusie

We have been reading for years - that when members request testing for anti-bodies - they are told they are not important as treatment is the same - NOT. So Docs are looking at a Low TSH and possibly a high FT4 and FT3 - or not :-)

We should be campaigning for better diagnosis as well as the re-instatement as T3 as a treatment. Surely giving patients carbimazole willy nilly is very damaging to the whole body ... I despair.

Sorry over active mine is

SeasideSusie
SeasideSusieAdministrator in reply to Kenzie12

Kenzie

Sorry over active mine is

And was this confirmed by testing the antibodies mentioned above - TSH receptor antibody (TRAb) and Thyroid stimulating immunoglobulin (TSI)?

After advice from all these knowledgeable people, I rejected the radio iodine treatment. Like you, I am on carbimazole (only a small dose, I think) 5mg and 10mg alternate days. I started off on 5mg daily two and a half years ago. I have a multi nodular goitre. The last consultant I saw (different one each time) reported to my doctor

"She is worried about the risk of going hypothyroid as at the moment she feels well and she is worried about the risk of developing hypothyroid symptoms after radioactive iodine. I think this is a valid concern and I have agreed with her that she is well controlled on Carbimazole clinically and biochemically and there is no particular need to go for radio active iodine. I have explained to her that there is no long term safety data on the Carbimazole long-term use, however, there is also nothing to suggest it causes harm". I should really have just posted the last paragraph.

I'm lucky in that I haven't put on weight, although I'd like to lose some!

Thank you after reading yours it's so much like me.. I'm on 5mg carbminazole now ...I great was on beta blockers aswell and started off on quite a high dose of carbminazole...i cannot have the iodine as my 6 year old grandson lives with me ...have you been offered the operation?.... and did your consultant say about the long term affect of taking the tabs

No, not offered operation but don't think I'd qualify and wouldn't want it. I have too many other problems. I get what you mean, our granddaughter lives two doors away and we have a dog so that was all going to be a problem too, not that that influenced me. The consultants view is shown in my reply above.

At the moment you shouldn't even consider taking radioactive iodine, nor should you let a surgeon come near you with a scalpel. It isn't clear what condition you are dealing with.

There are people on this forum who have taken thyroid-suppressing drugs like carbimazole at a low dose for years. They feel well, and haven't needed treatment for hypothyroidism. Some people have stayed on carbimazole for a year or more and have then gone into remission.

Surgeons are in too much of a hurry to remove thyroids or kill them off just to get the patients off their lists and return the patient to the tender mercies of their GPs. They don't consider the future problems of being hypothyroid. I suspect this is because they think hypothyroidism is a minor condition, even though it ruins the lives of millions of patients (who are mostly female) around the world.

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