Stopping carbimazole, will overactive thyroid c... - Thyroid UK

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Stopping carbimazole, will overactive thyroid come back?

MusicK profile image
39 Replies

Hi i was diagnosed with overactive thyroid in 2017. I was put on carbimazole which worked well and reduced the dose over 2 years. Unfortunately once i was off the medication the problem started again and it came back around 10 months later. I then chose to try carbimazole again as it helps and i have no symptoms on it.

Im now due to stop carbimazole once more. Doctors say its likely to come back and i then will need to decide on how to remove my thyroid. Is this truly my only options if it comes back? Is there anyway to reduce likelihood of it coming back?

Removing my thyroid will obviously mean medication for life and im in my late 20s.

Any advice on this anywhere? My doctor isnt so nice offers no suggestions and doesnt even sympathetically say that i will probably be on medication forever.

Any help please let me know x

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39 Replies
Lora7again profile image
Lora7again

I know of people who have taken carbimazole for over 10 years and are ok as long as they have regular blood tests. It is your choice whether or not you have your thyroid removed so don't let your doctor pressure you into something you do not want.

PurpleNails profile image
PurpleNailsAdministrator

I think doctors tend to be too ready to halt carbimazole. Hospital protocol is to “offer” medication for around 18 months then “suggest” definitive treatment ie surgery or radioactive iodine treatment.

So their expedited approach is to limit medication as quickly as possible and arrange final treatment once relapse occurs. Drs prefer RAI - which is very easily administered. They view hypo easily treatable by GP whereas specialist monitoring of hyperthyroid patients is expensive.

They imply you don’t have a choice but you decide your treatment path not your doctor.

I’m on longer term Carbimazole for a nodule which is constant, less fluctuations, no possibility of remission / relapse.

My specialist stated she would only be happy to keep me on her books (ie her wait list) unless I undergo RAI soon - otherwise I’ll be discharged for GP to monitor & should be re-referred on.

I refused at first, then a few months later agreed as I figured I would get quicker online access to results. I’ve not needed an adjustment for many months & would be confident what adjustments would be necessary with results.

So If you well are controlled on carbimazole, taking long term is an option & there is still a fair chance of Graves remission.

I’m sure many do well after Radioactive iodine treatment - once stable on the right level levothyroxine (LT4) and are glad to over the uncontrollable high hyper levels.

However a minority do struggle to be adequately replaced after on (LT4) and this appears to be because GPs dose by TSH alone and patients remain in a hypothyroid state or conversion to FT3 is significantly compromised long term & low FT3 = hypothyroid symptoms.

How much carbimazole do you take?

What are recent results? TSH, FT4,FT3. TPO & TG antibodies. Were TSI or TRab antibodies tested to confirm Graves or cause of hyper? Have Folate, ferritin, B12 and vitamin D been tested recently.

Lalatoot profile image
Lalatoot

I had 3 trials of coming off and I went overactive again each time.Some endos are happy keeping patients on a low dose of carbimazole long term; other endos are against it and want the patient to have a thyroidectomy or Radio Active Iodine treatment. The latter endos cite the dangers of hypothyroidism and the risk of being on carbimazole long=term as they judge it.

Your decision depends on your thoughts - either way you are likely to be on medication for life like diabetics are, for example - either carbimazole or levothyroxine if you go for an op/RAI.

tattybogle profile image
tattybogle

Hi Musick, Welcome , Smart move finding this forum .. well done

Just so you know the score ........

Endocrinologists will usually give patients the impression that if you relapse again you must choose a definitive treatment , and for most patients they will say the 'preferred' option is RAI.

....But you do have control of your treatment , and you do have choices .

Take as much time as YOU need, don't be rushed by them , and do make sure you fully understand ALL your options first before agreeing to anything permanent .

If you do choose to come of carbimazole now and unfortunately relapse again , and if you know you are able to feel well and stable on a low dose of carbimazole , then it is possible to decline the other options and stay on that long term if that is what you would prefer to do .

NHS endocrinologists won't 'offer' this as one of your 'options' because they are under pressure to move you off their consultants list as quickly as possible .. and if they give you RAI , when you later become hypothyroid you will then go on the GP's list which is a much cheaper situation for the NHS than endocrinologist care...hence why it's the 'preferred' option .... easy to administer , and very cost effective....( and very final ... most will end up hypothyroid eventually) .

Being on replacement thyroid hormones for life is no problem IF it works well for you and you feel well ... unfortunately not everybody does feel ok on Levothyroxine , and they forget to tell you that bit when offering RAI... at least 10/ 20% of people on Levothyroxine do not feel at all well .. and that is the real problem,.. if you end up end one of that 10/20 %... the NHS are unable to offer much help at all for them at the moment ( that's why this forum has 125,000 members)

The level of your TRab antibodies may give some indication of the likely hood of relapse.

So you may want to find out what level they are now before deciding when to try coming off Carbimazole .

There is evidence that the longer you stay in Carbimazole , the better the chance of staying in remission . (see study link below )

There is a risk of serious side effects to the liver from Carbimazole/ PTU... and this risk is often given as an explanation for why you can't be allowed to stay on it long term , but you need to be aware that this risk is not cumulative .. ie. it doesn't get any greater the longer you stay on it ... there is no greater risk of developing that problem whether you are on it for 18 months or for many years . ( there is study evidence for this on this forum somewhere but i don't have it to hand at the moment.. someone else will have a link for it though )

You should read this :

pubmed.ncbi.nlm.nih.gov/338... The longer the antithyroid drug is used, the lower the relapse rate in Graves' disease: a retrospective multicenter cohort study in Korea

and this :

pubmed.ncbi.nlm.nih.gov/306... Impaired Quality of Life After Radioiodine Therapy Compared to Antithyroid Drugs or Surgical Treatment for Graves' Hyperthyroidism: A Long-Term Follow-Up with the Thyroid-Related Patient-Reported Outcome Questionnaire and 36-Item Short Form Health Status Survey

and this :

rcpe.ac.uk/sites/default/fi... Thyroid Hormone Replacment ~ A Counterblast to Guidelines ~ AD Toft

written by a respected endocrinologist , past president of british thyroid association , who was also the Queens physician when she was in Scotland .

" In the meantime,

I am so concerned about the state of advice on the

management of primary hypothyroidism that I am increasingly

reluctant to suggest ablative therapy with iodine-131 or

surgery in patients with Graves’ disease, irrespective of age

or number of recurrences of hyperthyroidism. Treatment with

a thionamide, in which the hypothalamic-pituitary-thyroid

axis remains intact, making interpretation of thyroid status

simpler, is currently a more attractive proposition. It is not

that I am unprepared to disregard guidelines by prescribing

‘a little too much’ LT4 or combined thyroid hormone therapy,

but I know that an increasing proportion of primary care

physicians, advised by guidelines, will not accept my

advice. Experience of managing more patients with thyroid

disease than most over a period of some 40 years is being

trumped by inflexible guidelines; truly a remarkable state

of affairs. "

Some people on here who were having a very hard time and felt lousy on Carbimazole or who had constantly relapsing Graves, are actually very glad they had RAI / thyroidectomy , and are doing well on Levo.

So RAI /Thyroidectomy can certainly be the right solution for some , and some patients really don't have any other options if they react badly to Carbimazole and PTU .

You will of course find a disproportionate amount of people who have difficulties after RAI / thyroidectomy on here , precisely because they are having difficulties..... the one's who feel fine afterwards are not found on here.

So don't get freaked out by all the hard stories you will read on here.. keep an open mind while you read and learn .... and ask plenty of questions .

Just remember its YOUR thyroid .... and it's up to YOU what you choose to do with it.

if you currently feel well enough that you can manage to get with your your life , and you don't like what an endocrinologist suggests , then just stall them and ask for more time until you are happy you have researched all your options , don't let them push you into anything just because they are under pressure to move you off their books efficiently .

PurpleNails profile image
PurpleNailsAdministrator in reply to tattybogle

This might be relevant regarding the level of risk on carbimazole

The most serious risk of taking carbimazole is a drop in white blood cell called neutrophils or granulocytes causing agranulocytosis - also liver issues. The risk remain the same while taking the medication. So this means the risk does not lower or increase no matter how long you take the medication.

I found this article saying the incidence of carbimazole induced agranulocytosis is placed at 0.3–0.6%.so it is low.

ncbi.nlm.nih.gov/pmc/articl...

Liver issues are a concern too, although I believe the risk for liver issues when using PTU is slightly higher, which is why PTU is 2nd option.

endocrine-abstracts.org/ea/...

Cases of serious side liver side affects are rare and unreseached therefore it’s simply listed as <1%

In the UK patients on carbimazole & PTU are not given regular / routine full blood counts (FBC) or Liver Function Tests (LFTs) which would detect either issue. Doctors seem prepared over state the risk of remaining on antithyroid and do not advise a %, this is to encouraging surgery or RAI. Patients are expected to be vigilant for symptoms and report for testing if required.

tattybogle profile image
tattybogle in reply to PurpleNails

Thankyou x

pennyannie profile image
pennyannie

Hello MusicK and welcome to the forum :

Graves is an auto immune disease and said to be driven by stress and anxiety and there is currently no cure, for this poorly understood and badly treated AI disease all the AT drug does is it buys you time with the hope being that this is a ' one off ' incident and your immune system calms down and you get back on with your life.

The thyroid is the victim in all this and not the cause as the cause is your immune system having been triggered to go on the attack.

The thyroid is a major gland, likened to the body's engine, and responsible for full body synchronisation and you can't function well without a gland, and yes, there is life long medication for those unfortunate people who haven't a thyroid.

As already detailed the most current research is suggesting that long term AT thyroid medication is a better option and outcome for the patient, though I would imagine that this costs more for the NHS to manage.

It's all a question of degree, as some people can't tolerate the AT drugs, whilst others suffer such dreadful, uncontrollable symptoms of Graves that a thyroidectomy is a better option.

Are your eyes affected ?

I have Graves and had RAI thyroid ablation back in 2005 - I was well on the AT medication but told at my very first hospital appointment that I was to have RAI the following year as the AT drug was too dangerous to stay on long term - I knew no different and was totally compliant - details on my profile page.

I now self medicate, managing lingering Graves, thyroid eye disease and hypothyroidism.

I am unable to get the thyroid hormone replacement that I need through the NHS and am much improved buying my own medication, running my own blood tests, and looking after myself.

You might like to dip into the Elaine Moore website and read around the more holistic and alternative treatment options offered in other places in the world.

Work on what your own personal triggers were when you were first diagnosed Graves, as once triggered Graves is likely to ' pop up ' at other times of stress throughout your life, and consider what you can do to try and understand yourself better, and maybe consider your life / work balance for the future.

elaine-moore-com

Valarian profile image
Valarian

If you refuse RAI or surgery, they will have to leave you on carbimazole.

The question is, whether it's the right thing for you. You will probably be taking a pill every day for the rest of your life anyway, either carbimazole (the risks associated with carbimazole never disappear entirely, even on a low dose and after you've been taking it for a long time) or levothyroxine (which isn't medication as such, it just replaces/boosts your natural hormone levels). Some people struggle to get the treatment they need post RAI/TT. There will almost certainly be a disproportionate number of them here, because if they were feeling completely well, they probably just be getting on with their lives, but nevertheless, there are enough people in this position. for it to be a consideration.

Neither RAI nor thyroidectomy is completely risk free. so you will need to consider this first of all. There is also no going back once you've gone down this route,. All things being equal, I think a lot of us would rather take a low dose (say 5mg/day) of carbimazole every day than take an irreversible decision that we might regret. You also need to think about where you are in your life - might you want to have children, for example, or do you have other health conditions where high thyroid levels might pose an additional risk. I like travelling to all sorts of places, and one thought for me was that I might end up with thyroid levels going haywire in a country with less readily-available health care,

In my case, in three years, I'd never got down below 15mg carbimazole a day, and there were still times when my thyroid levels were at/above the top of the range. I'd never forgotten how ill I felt when I was first diagnosed, and never wanted to go back there again. In the end, it was a relatively easy decision for me and over two years after RAI, I'm still happy with the decision I took.

If you relapse again (the chances are unfortunately high, but let's remember it's still IF !) and your thyroid levels are high but stable enough to be kept in check with a reasonably low dose of carbimazole that you feel comfortable taking in the long term, you could always say you'd like to try it for a year, and see how you get on. RAI/TT will always remain an option.

Cavapoochonowner profile image
Cavapoochonowner

hello there, I was diagnosed with graves disease and thyroid eye disease in 2018. I have tried both the titration method and block and replace.I tried for remission once andrelapsed badly within 2 weeks.I have just had a total thyroidectomy 10 days ago .I took a long time coming to my decision and believe I gave all options a good try before deciding to ask for this myself.I am lucky in that I have never been pressured .I think that is very important.You have to be happy that you are doing right by yourself with no regrets.That is the stage I was at.I had had enough.So far so good for me.I have absolutely no regrets so far although I realise I have just stepped on to this new road and am prepared for problems along the way.I really feel like a new person, so calm for the first time in ages, no aching joints and muscles which may have been caused by the carbimazole.Either way I reasoned I would be on medication for life so that doesn't worry me.If you need it , you need it.I have kept my profile up to date if you care to take a look as to how I came to my decision.Just thought I'd give another perspective so you have as much information as possible.Hope this has helped in some way.

MusicK profile image
MusicK in reply to Cavapoochonowner

Thank you so much so greatful for everyones replies. ! Im unsure if it makes any difference but the last time they checked i didnt have graves disease

tattybogle profile image
tattybogle in reply to MusicK

Have you never tested positive for Graves antibodies ?

TRab (Thyroid Stimulating Hormone Receptor antibodies )

or were they positive previously and negative now ?

if not, what do they think is the cause of your hyperthyroidism ?

MusicK profile image
MusicK in reply to tattybogle

No not for graves but this was a few years ago and maybe i should test again. I dont recall TRAb information either . This group is opening my eyes with how little i know! But when they said no graves disease a few years back they said they dont know why, and maybe i had a throat infection once that triggered something... a doctor also said i had a small nodule

I should probably check all these things again

tattybogle profile image
tattybogle in reply to MusicK

ok so , TRab (Thyroid Stimulating Hormone Receptor antibodies ) ARE the graves antibodies.

(They may also be tested for with a test called TSI ~Thyroid Stimulating Immunoglobulin)

They fit on to the TSH receptors on the thyroid just the same as TSH does .. And this is what causes the thyroid to make more T4/T3.

TSH (thyroid stimulating hormone) is made in the pituitary and is just a control signal which stimulates the thyroid to make T4/T3 as required ... when we have enough T4/T3 the TSH level will go quite low ,and so the thyroid will then turn down it's production of T4/T3 because the pituitary realises we have enough.

But unfortunately TRab are the same 'shape' as TSH so they fit onto those receptors too . The thyroid can't tell the difference between TSH and TRab , and so when TRab are there , it carries on making more T4/T3 even though the TSH level is low.

And that is how graves works.

When the TRab antibodies aren't there any more ... you have 'remission'.. and the thyroid is then only stimulated/ controlled by the TSH , as it should be.

Some nodules don't 'do' anything, but some (known as 'hot' nodules) can produce their own T4 / T3 independent of the thyroid or TSH control .. and so a 'hot ' nodule can cause high T4/T3 levels without any Graves antibodies .... and 'hot' nodules do not go into remission.... they just carry on making a small amount of extra T4/T3 all the time .

So yes, you want to ask for any TRab / TSI results you have had previously, and ask for them to be retested again now .

and you might want to ask for the details of any thyroid scan you had , so you are clear what sort of nodule you have .

MusicK profile image
MusicK in reply to tattybogle

Thanks i will ask. Is it best to ask my doctor gp or the endocrine clinic doctor

tattybogle profile image
tattybogle in reply to MusicK

probably endocrine... most NHS GP's seem not to be able to order the blood tests for TRab . looks like an endo usually has to order it.

any previous results from TRab tests and scan's should theoretically be available on GP records though , assuming endo gave them the information.

tattybogle profile image
tattybogle in reply to tattybogle

p.s . if you currently feeling well enough on stable dose of carbimazole , and since you just changed Doctors , i would postpone any decision about coming off carbi until you have had time to get your head round all this new information ,and your records have had time to catch up with you at your new surgery.

There is no harm in staying another few months on carbi if you are stable on it .... in fact as mentioned in that study ,it is quite likely that 'longer is better'

Even though we think you don't have graves antibodies... the cause for your hyper still isn't clear .

Personally i wouldn't be in any hurry at all to try coming off it until i was much clearer what was going on AND could see all my results properly, including up to date fT4 and fT3 levels .. even if that meant getting them tested privately... lot of people on here test fT4/ fT3 / TSH for themselves because NHS so often won't do fT3 when you need it ....and it can be done for less than £30

Lalatoot profile image
Lalatoot in reply to MusicK

I didn't have Graves either. For me it was an excess of iodine that sent my thyroid off on its own journey!

Cavapoochonowner profile image
Cavapoochonowner in reply to MusicK

hello again, glad it helped in some way.I am not as knowledgeable as most people on here ,but I think it would be important to know why your thyroid is becoming overactive, so you can be on the correct treatment.As Tatty says this needs checking.

PurpleNails profile image
PurpleNailsAdministrator in reply to MusicK

So doctors did test ?what? but you were negative for Graves?

Which antibodies were tested?

There are many

TPOab (Thyroid Peroxidase antibodies) present with autoimmune - both (Hashimoto’s & Graves)

TGab (Thyroglobulin antibodies) autoimmune- present with autoimmune - both (Hashimoto’s & Graves)

If Graves suspected this MUST be confirmed with:

Thyroid-Stimulating Immunoglobulin (TSI) Graves (and or TRab)

TSH receptor antibodies (TRAb) Graves.

Doctors should clarify cause, but often treat all overactive as if it were Graves.

MusicK profile image
MusicK in reply to PurpleNails

I will have to look at my old medical notes and or ask them again to find out. However at the moment my levels are fine and i feel fine which is why they are saying i can now stop taking carbimazole and see.. so im unsure if testing for causes now when my levels are calm makes any difference?

I definitely was negative for graves a few years back and thats all i know at the moment.

PurpleNails profile image
PurpleNailsAdministrator in reply to MusicK

I have hyper from toxic or hot nodule (negative autoimmune).

This was confirmed by uptake scan. Which shows the function throughout thyroid. So as you have a known nodule a hyper functioning nodule is a possibility.

This means it will not remit, and doesn’t have potential for remission as with Graves.

Do you take a high dose to control levels?

What are your actual levels? When doctors say levels are “fine” It means in range. & they often look at TSH & not FT4 & FT3. It’s important you know where in range & understand how they manage treatment.

MusicK profile image
MusicK in reply to PurpleNails

On my summary i cant seem to see FT3 and FT4 levels

Serum TSH level 1.04 mU/L

Serum ferritin level 66 ug/L

Was my results a month ago

PurpleNails profile image
PurpleNailsAdministrator in reply to MusicK

Going by thyroid stimulating hormone TSH alone is a bad idea. It’s a pituitary hormone - not a thyroid hormone which signal thyroid to produce new hormone. Drs are assuming that as your TSH is in range so are your FT4 & FT3 but if your TSH is sluggish or affected by other factors your FT4 & FT3 may be low.

Ferritin looks on low side. If it’s in range doctors are satisfied, you need optimal.

Always add lab range with results. Ranges vary between labs

MusicK profile image
MusicK in reply to PurpleNails

The range of ferritin was 10.0 - 120.0. Thanks so i need more detailed results/test. I will try to get this

PurpleNails profile image
PurpleNailsAdministrator in reply to MusicK

Is this for online records? If with a new practice it’s likely they will need to grant access to historical record and results. (They have a calendar month to set this up).

This often requires a form and ID. Check with practice, England are contractually mandated to provide record but other areas its optional & decided by practice if they with to offer the facility.

GP practices don’t have automatic access to hospital held records. You can request copies of hospital records, either directly from the department which requested them. Approach the department secretary who should be able to send copies. If there’s any obstruction there are other ways to request copies of hospital records.

Never accept verbal or hand scribbled notes insist on a printed copy with ranges (ranges vary between labs so essential).

For full thyroid evaluation you need:

TSH

FT4

FT3

Thyroid antibodies TPO, TG, Trab or TSI

Folate

Ferritin

B12

Vitamin D

If Doctor hasn’t fully tested or won’t you might want to consider doing a complete test with a private company. It will give you a current full picture & will likely much quicker than dealing with Doctors.

It can be done via post and finger prick sample (or extra fee for phlebotomist visit). Companies offer packages eg Medichecks advanced thyroid function which including all the bio markers you need

(Trab & TSI are specialist & cost more, but are available)

Here a link with list of companies & discount codes.

thyroiduk.org/help-and-supp...

MusicK profile image
MusicK in reply to PurpleNails

Thanks i will check and tp one of your other questions im on 5mg carbimazole and have been for a while if im honest ive been not so great on taking these past couple months but thats what im on and havnt felt any major symptoms for the 18 months/2 years ive been on carbimazole really

PurpleNails profile image
PurpleNailsAdministrator in reply to MusicK

That’s a really low dose.

Drs use it a lowest possible dose as 5mg is smallest manufactured. Previously I took 7.5 a day but cutting a 5mg in half. I now take 10mg 4 days a week 5mg 3 days. That extra 2.5 a week was all I needed.

With autoimmune levels tend to fluctuate, especially early on. If you have stable levels you may have same issue as me of hot nodule. If small it might be enough to cause gradually rising levels. Mine is 5cm so on larger side.

Did you start on a higher dose and reduce down?

The levels may only be fractionally high to be controlled by 5mg.

What are your symptoms when hyper? Do you have hypo symptoms at other times

This link compares symtoms although they can be very similar. Symptoms are diverse & affected by other factors such as nutrients.

thyroiduk.org/if-you-are-un...

MusicK profile image
MusicK in reply to PurpleNails

Yes i do recall them saying i have the nodule i will find out what this nodule means. I believe it would be toxic nodule aswell like you said. I vagulef remember that. They havnt tested it again or size of thos since 2017. They touch my throat but thats all.

Yes i started on 20mg again in october 2020 went down to 10mg and now 5mg

When i was hyperactive the 1st and 2nd time i was tired lost weight couldn't exercise etc the 2nd time

Was mainly tired and sweaty but knew what it was much faster and so didnt lose the weight that time.

I have not felt any symptoms since taking carbimazole from 2020 its been working well and ive been feeling good and able to manage everyday life as normal.

PurpleNails profile image
PurpleNailsAdministrator in reply to MusicK

Was the nodule scanned? Or nodule only felt on thyroid.

It’s referred to as “hot””toxic” “hyper” or autonomously functioning nodule. Solitary nodules are more unusual but multi nodular goitres MNG clusters of nodules throughout thyroid are know to cause hyper levels too.

Nodules can be detected by ultra sound but can’t conclusively determine function, so they can be non functioning (cold) or normally functioning (warm).

My thyroid was scan and nodule aspirated. I was told everything ok ( & it was benign) but the function tests were not processed. So the hyper level went undetected (again). I was likely hyper for about 5 years in all gradually rising.

Your levels might have been higher first time. But caught earlier next time around.

Weight can go either was too. It’s said 10% or hypers gain weight. (I did)

My personal theory is that having elevated thyroid levels causes the uncontrollable appetite and exhausts you but without the dangerously high levels which burns everything away.

MusicK profile image
MusicK in reply to PurpleNails

So is the function test the ft3 you mentioned? Ive jist looked back at some notes and i can dee it say toxic diffuse goitre in 2017 but on the app i get nothing more. I will get more info and come back to this thread

PurpleNails profile image
PurpleNailsAdministrator in reply to MusicK

Specifically thyroid function test (TFTs) are:

TSH (pituitary hormone) thyroid stimulating hormone (signals thyroid to increase/decrease production - rises when thyroid level low & drops when levels are high. *isn’t reliable* You need thyroid hormone. Carbimazole dose needs adjustment by FT4 & FT3 not TSH alone.

FT4 - free thyroxine main thyroid hormone, some feel best when in range, some are unaffected by high / low levels. and symptoms are governed by FT3. Some are sensitive to FT4 levels too.

FT3 free triiodothyronine (the more active hormone, most is converted from FT4. - a small quantity is produced). If low most feel hypothyroid if above range feel hyper.

Antibodies are used to diagnose but often not repeated.

Key nutrients separate to function test but are very relevant, as often low with thyroid disfunction. Levels need to be optimal for thyroid health & good conversion. poor nutrients compounds symptoms.

NHS rarely test FT3 and all nutrients. Vitamin D is rarely tested, many are told to just take a low level supplement. Low doses wouldn’t be effective for deficiency.

Nodules can present with disproportionately higher FT3. ie when I was diagnosed FT4 was fractionally above range FT3 not quite double normal range.

Also - Doctors will note “toxic diffuse goitre” as it means you have toxic levels (from blood test) and appearance on swollen thyroid.

If you do have a known thyroid hyper nodule taking you off carbimazole would be wrong move as it would be known your high levels would rise again. They say you don’t have Graves. Why would they allow this?

MusicK profile image
MusicK in reply to PurpleNails

I also did another blood test yesterday so hopefully gives me more. Ive recently changed doctors so my notes are all summaries and i cant seem to redily get full details as such

pennyannie profile image
pennyannie in reply to MusicK

There are 2 auto immune health issues that tend to attack the thyroid :

Graves and Hashimoto's are both AI diseases and start off the same way and the only way you know which is which is through running an antibodies blood test at the time of diagnosis, and prior to treatment, which is the medical evidence of diagnosis and on which your treatment should be based.

Graves is medicated with AT drugs like Carbimazole which block your own thyroid hormone production from rising any further and the unique antibodies are generally written as a TSI or a TR ab:

Hashimoto's has different antibodies - generally written as a TPO and or a TgAB and is not medicated as your T3 and T4 levels will come back down by themselves

Do you have your first set of results from diagnosis back in 2017 showing your TSH , T3 and T4 blood test results and ranges ?

pennyannie profile image
pennyannie in reply to MusicK

Graves waxes and wanes throughout one's life, it's an auto immune disease.

Once a Graves patient - always a Graves patient : it is in your blood and DNA -

All you can try and do is understand what your triggers are, and why and what sends your immune system on the attack.

Do you have any issues with your eyes ?

MusicK profile image
MusicK in reply to pennyannie

No problems with my eyes that im aware of no. I wear long distance glasses and thats all . This group shows its useful to know much more for sure. Im unsure any of my triggers really as each time i was overactive again it seem to have just 'happened' but im sure there are triggers indeed which i want to be on top of to see if there is anything atall j can do to avoid overactiveness coming back

pennyannie profile image
pennyannie in reply to MusicK

Well first and foremost, reading through this post, it seems that we need to establish exactly what thyroid health issue you are actually dealing with.

humanbean profile image
humanbean

One thing to bear in mind is that when a doctor mentions a "preferred" treatment for someone in your situation they aren't talking about it being preferred by patients, they are talking about it being preferred by them because it helps them (endocrinologists in secondary care) to get you off their books and pass you back to GPs in primary care. Doctors use language in some very sneaky ways.

Another point...

If you refuse to go through RAI or thyroidectomy you cannot be denied treatment with pills, for as long as you need them.

Since your thyroid problem hasn't been definitively identified yet you have five possibilities that I can think of - don't let yourself be pressured or pushed into any particular route. It's your body and you have to live in it, and living with hypothyroidism isn't always the simple and easy solution that doctors tell patients it is.

1) RAI

2) Thyroidectomy

3) Continue the way you are with carbimazole

4) Block and replace

5) Hope that one day you go into remission - but this doesn't always last.

Fruitandnutcase went into remission from Graves for years. I'm not sure what her current situation is.

...

One thing I would suggest is that optimising your health in any way that you can might help to keep your hyperthyroidism under control, although I'm not suggesting it will cure you.

People with thyroid disease of any kind tend to have low levels of nutrients. It would be a good idea to get as many nutrients tested as possible and then optimise the ones that are low.

The nutrients that are mentioned and tested frequently on this forum are :

Vitamin B12

Folate

Vitamin D

Ferritin (iron stores)

If ferritin is low or high then it is a good idea to do an iron panel which usually includes CRP (a measure of inflammation which influences ferritin), serum iron, transferrin or TIBC, transferrin saturation, and ferritin.

Other nutrients that rarely or never get tested but get a mention quite frequently are :

Zinc

Copper

Iodine

Selenium

Magnesium

Vitamin K2

Vitamin C

You can think of zinc and copper as being on a seesaw - if one goes high the other goes low. Usually we end up with high copper and low zinc. I have come across just one member who said they had the opposite problem - low copper and high zinc - she turned out to have some other health problems involving copper as well (which she already knew about) which affected her blood but I don't remember the details.

If iodine is low then supplementing it is worthwhile - but some people tolerate it very poorly. Apparently there is a relationship between selenium and iodine, and poor tolerance of iodine may be caused by low levels of selenium.

When taking any nutrients in supplement form it is helpful to know how the body excretes it. So, as an example, excess magnesium is excreted via the kidneys. If the kidneys are functional that is okay, but if the kidneys are not working properly there is a risk that magnesium could build up in the body and cause people to become ill, so in that case, if magnesium is needed it would have to be supplemented with doctor involvement. (I've never come across anyone mentioning this happening to them on the forum, but it doesn't mean it never happens. Perhaps people with severe kidney disease don't come to thyroid forums because they have other things to worry about.)

Another issue with magnesium is that testing it is pointless. There is less than 1% of the body's magnesium found in the blood and blood cells. The rest is found in magnesium, bone and other body tissues. The body controls the level of the magnesium in the blood very tightly and if it runs low it steals it from elsewhere. So magnesium levels in blood almost never look low, even when levels really are very low.

So, I only mentioned magnesium to point out possible pitfalls. The best thing to do after testing anything is to ask on the forum what your result means for your health.

MusicK profile image
MusicK in reply to humanbean

Thank you i will work on this . I need to check and get them all tested

tattybogle profile image
tattybogle

This old post and replies about long term carbimazole patients may interest you , so adding a link in case you haven't seen it already :

healthunlocked.com/thyroidu.... 'dangers-of-being-on-carbimazole-long-term-i-have-been-on-for-22-years'.

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