Have been back to the specialist and did not increase my carbimzaole to 40mg from 10mg as I didn’t feel I needed to.
My March blood test (last one I had) came back as;
TSH 0.03, Free T4 12.8, Free T3 5.3
Again I am being pressured into upping my meds to make my thyroid TSH level go into “normal range” as until it does a long term solution radio iodine I think? (Apologies if incorrect) or removal will not be considered.
I pointed out I have never asked for either referral! As I feel it is drastic! But they have told me there is a risk to being on carbimazole long term due to the nature of it potentially reducing white cells? And to have an overactive thyroid altogether affects heart muscle and bones.
Another specialist tells me there is no study on long term use of carbimazole as most people respond and come off it.
So again I’m torn! I personally in my gut feel the “long term” solutions are so drastic in relation to my results?? But I don’t want to get another 5 years down the line and then wish I’d listened if I do have any other health issues caused by staying on carbimazole?
Just to me with such a minimal out of whack blood test is removal then giving me life long treatment really the answer?!!
I live well, I don’t drink alcohol, smoke or do drugs, I eat well now (in comparison to my 20’s!) I make sure I eat a lot of fruit and veg, whole foods (but not giving up chocolate at the weekends I’m afraid! I have to have some vice!) I exercise when energy allows which is 4ish times a week. I really have tried to turn this around naturally.
I’ve been on carbimazole between 5mg and 10mg for 4 years this year.
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It is very well-known that TSH levels can remain low for a LONG time when treated for hyperthyroidism even when FT4 and FT3 are appropriate for the person. At least months and possibly years.
TSH is entirely inappropriate as a guide to treatment in your circumstance.
If your hyperthyroidism is well-controlled, in that you feel OK and FT4 and FT3 results are reasonable, there is no need to be in a rush to change your regime. Whether that is dose adjustment or "definitive" treatment.
Take your time. Discuss. Read. Eventually, make your decision.
Yes, there is the potential of carbimazole reducing white cells. But it is all in that word "potential" - there is the potential for having an accident every time you travel in a car. I don't know of any evidence that can identify those in whom white cell issues are likely, or will, occur. So it is just one of those things you need to be aware of.
There are quite a few studies saying long term low dose ATDs are safe, so whoever told you there aren’t any is seriously lacking up-to-date education or telling porkie pies. Or both. People with Graves can’t be dosed on TSH (that’s actually in the NICE guidelines). You don’t put your ranges; on mine the FT4 would be low range and FT3 just above mid range. If your ranges are similar, then you need to be backing away from a doctor who wants to put you up to 40mg carbimazole. That is outrageous! I’ve only been on that dose once, when my FT4 was >100. Giving it to someone whose FT4 is bottom of the range is absolute madness. That would bring about swift hypothyroidism and misery. It’s your choice and yours alone if you feel you want to do RAI or TT eventually. But if you’re well and controlled on carbimazole I don’t see the rush.
Yes! Your ranges are the same as mine. If you feel well on that then I wouldn’t change your dose. I can’t operate with my FT4 that low, I’d need a reduction. But your FT3 is better than mine so you could be OK there. Please God don’t increase to 40mg carbi!!!
Exactly!! Thank you!! She wants me up to 15mg from now (as I refuse 40) but then increase to 20 then 25 etc. But I honestly think they’re trying to push it so I have to have it out as that seems to be their only end game?!
I’m sorry but obsessing over the TSH in a Graves patient is folly. I notice from the comment below that you don’t know if you have antibodies or not? You need to get TRAb or TSI tested to see what’s happening, and you need to get copies of your original diagnosis to see what they tested at that time. Did you have an uptake scan?
It varies specialist to specialist at my hospital some say no it definitely isnt and when I queried one that thinks it is he said although the results do not present as graves the symptoms do?!
Graves is a form of hyperthyroidism, so the symptoms can be similar, but it does not mean u have Graves unless your TraB and/or TSI antibodies are positive.
Reading again through the thread, it's beginning to sound like you have very incompetent doctors or maybe I am missing something.
Way back in 2012, there was already suspected problem with your thyroid? For which there wasn't any treatment till 3 years ago. What was the problem back then? Borderline blood test results? Were there antibodies tests done at the time?
3 years ago carbimazole was prescribed but what was the diagnosis?
And 2 scans have been done showing an overactive nodule.
Aside from Graves, there are other causes of hyperthyroidism. Your doctor's job is to find that cause.
Having some family history of Graves does not automatically mean that what u have is Graves, it could be something else related to the thyroid.
Have a look at this site showing diagnosis and treatment of thyroid nodules. Perhaps it can serve as a guide as to what your doctors should be doing for you, and maybe explain why they keep pushing RAI, though depending on the diagnosis, maybe you only need to have the nodule removed and not the whole thyroid??
I believe your good general health will stand you in good stead to come out of this thing well. You just need good doctors who know what they are doing.
Thank you! This is really helpful! The problem is I don’t have one consistent dr anymore like I did before, so each one I see has a different take on it despite having the same results in front of them!
Initially they didn’t feel it was definite I needed carbimazole (I was very reluctant to take them) but in 2015 my bloods showed I did need to start treating it which once I got married in October I started. Since being on carbimazole I’ve been on a whirlwind of anxiety, depression, exhaustion, or being full of energy and can’t sleep etc. It feels like they want removal to move me off the books at times!
Don't let the different doctors confuse you. Focus on what they need to be doing for you in order to give you a definite diagnosis. If they sound like they have no idea what they are doing, you are better off looking for a new doctor and starting from scratch.
Hyperthyroidism, not getting the correct treatment, will wear down your health.
Right now, you don't have a diagnosis and there's no confirmation of Graves. Whether the carbimazole is sufficient to keep whatever it is under control, we have no idea.
"So again I’m torn! I personally in my gut feel the “long term” solutions are so drastic in relation to my results?? But I don’t want to get another 5 years down the line and then wish I’d listened if I do have any other health issues caused by staying on carbimazole?"
You are obviously conflicted and want to make the best decision for your health.
You won't be able to do that unless you know what the problem is.
At least get the correct diagnosis. Whatever you decide after that, at least you will be deciding with all the cards in your hand.
“Considering all data from 1660 patients treated with ATD for a mean duration of 5.8 years (around 10,000 patient-years), major complications occurred only in 14 patients: 7 severe agranulocytosis, 5 severe liver damage, one ANCA-associated glomerulonephritis and one vasculitis with small cutaneous ulcerations. Minor complications rates were between 2 and 36%, while more complications were in higher doses and in the children. The most reported AE was cutaneous reaction; the other adverse events were elevated liver enzymes, leukocytopenia, arthritis, arthralgia, myalgia, thrombocytopenia, fever, nausea and oral aphthous. Long-term ATD treatment is safe, especially in low dose and in adults, indicating that it should be considered as an earnest alternative treatment for GD.”
“Patients with persistently high TSH-R-Ab at 12-18 months can continue MMI treatment, repeating the TSH-R-Ab measurement after an additional 12 months, or opt for therapy with RAI or thyroidectomy.”
“If a patient relapses after completing a course of ATD, definitive treatment is recommended; however, continued long-term low-dose MMI can be considered.”
As a Graves patient who has chosen long term drug treatment I have read your post with interest and I think the replies you have received contain really good advice and information to help you make your decision on how you go forward. However I am confused you say you were given a diagnosis of Graves and yet antibody tests were negative. I thought if you don't have TRAb /TSI you don't have Graves. What tests were done ?
This is the other issue I have! They say my results do not show graves but my “symptoms are typical of those with Graves’ disease” so treat it as Graves’ disease?!
My blood results have never shown this to be the case.
Although due an update (this is dated 2010), this chapter is possibly of interest as to other possible causes of hyperthyroidism. Read the last sentence I quote (emphasised by me). Apologies if it is not very nice to read some of it:
Thyrotoxicosis of other Etiologies
Peter Kopp.
Author Information
Last Update: December 1, 2010.
INTRODUCTION
Thyrotoxicosis is defined as the clinical syndrome of hypermetabolism resulting from increased free thyroxine (T4) and/or free triiodothyronine (T3) serum levels (1). The term thyrotoxicosis is not synonymous with hyperthyroidism, the elevation in thyroid hormone levels caused by an increase in their biosynthesis and secretion by the thyroid gland (Table 1) (2). For example, thyrotoxicosis can result from the destruction of thyroid follicles and thyrocytes in the various forms of thyroiditis, or it can be caused by an excessive intake of exogenous thyroid hormone. It should also be noted that the elevation of free thyroid hormone levels does not always result in thyrotoxicosis in all tissues. In the syndrome of Resistance to Thyroid Hormone (RTH), dominant negative mutations in the thyroid hormone receptor bets (TRbeta) result in decreased thyroid hormone action in tissues where TRbeta is the predominant receptor, for example in the liver and the pituitary, whereas other tissues such as the heart, which express mainly TRalpha, show signs of increased thyroid hormone action (See Chapter 16 D). The most common form of thyrotoxicosis is Graves' disease, which is discussed in Chapter 10. This chapter reviews other etiologies of thyrotoxicosis (Table 1). The determination of the etiology of thyrotoxicosis is of importance in order to establish a rational therapy.
"They say my results do not show graves but my “symptoms are typical of those with Graves’ disease” so treat it as Graves’ disease?!"
You've had some excellent informed and measured feedback here, which I can't add to, but can certainly concur with. Regarding that quote however, I would ask them to specify exactly what were the symptoms, and how exactly, did they differ from symptoms that are "typical of those with non-autoimmune hyperthyroidism" - or indeed any other case of thyrotoxicosis of whatever etiology ...... It has the flavour of something Drs say when backed into a corner. 🙁
Thank you! And yes when I fire a lot of questions at them they say things like this often! Then put something different in letters that I’m always having to go back to as it isn’t a true reflection of what we discussed
Unlike your consultant mine sees no problem with long term carbimazole treatment. I am on block and replace. 10 mg. Carb plus 50 mcg Levothyroxine. This is because on Carbimazole alone I tend towards hypothyroidism. I still have high Trab even after 3 years treatment and so I am likely to relapse if drugs were stopped. I will likely be on this regime for many years although I am still optimistic that if a Trab test in the future showed lowered antibodies I could have a trial off the meds to see if I was in remission. The important thing is I feel well now . You can only decide what is best for you if you have all the facts. This includes your antibody results.
Have you asked to see these results. Sorry to be repetitive but what were they measuring ?
I was told originally I did not have Graves because my antibodies were negative. Only much later (and much wiser ) did I discover they had measured TPO antibodies . It took 2 years to finally have Trab measured.
I have all my results (well for last couple of years but the Graves was initially raised in 2010) but I just don’t know what I’m looking for in relation to this but will do some research!
I have Graves and am 15 weeks post TT. I was on Tapazole for 2 years with no side effects and had I not had an emergency because of my goiter I would still be on it. I never had any side effects, either white count or liver, fortunately. My endo has a patient who has been on it for 11 years with no ill effects. Don’t be pressured into anything - thyroid disease moves slowly and there is no rush - take your time. Wishing you all the best!
Thank you everyone that has responded! I feel so much better that my gut instinct seems to be steering me correctly from the advice you have all given. I am going to stick to my guns but also ask to see the results for the tests that show why they think could be Graves.
It’s amazing to me how much more knowledge you all have than some of my own specialists! (Not to speak badly against the nhs) but they seem to have tunnel vision and blanket treat everyone with the same approach.
I'm with Graves Disease diagnosed 2003 and treated with RAI in 2005, please do not repeat my mistake of being compliant, believing in all that was told me and trusting the doctors knew best.
Without TSI and or TRab positive blood test results you do not have Graves Disease.
Should you have Graves Disease there is a very interesting article on this website, but I don't know how to resurrect it for you.
It is written by the eminent endocrinologist Professor Anthony Toft, ex President of British Thyroid Association, doctor to the Queen when she's in Scotland etc. etc.
Thyroid Hormone Replacement - A Counterblast to Guidelines :- December 2017 Journal of the Royal College of Physicians of Edinburgh : in which he writes :
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 1-31 or surgery in patients with Graves Disease irrespective of age or number of recurrences of hyperthyroidism.
So, I think this says it all.
You've had good answers here, and there is not one post here who believes you should loose your thyroid. Doctors are target driven, not patient focused. Time is money and they need to move patients through the system as out patient waiting times are critical.
It's not acceptable, not to have a confirmed diagnosis with the necessary blood tests showing positive for either the TSI and or TRab Graves anti bodies.
It is not acceptable but inevitable that you feel worn down by this level of incompetence.
Are these endos the interns on their six monthly rotations throughout the hospital ?
Can you ask for a referral to another consultant ?
Sadly no the one I have seen for many years is the head of that department and the one pushing for removal! Your targets theory makes sense as I just commented to someone else it feels like they want me off the books!
I then had interns etc
Then a nurse specialist
Then a thyroid dr who was AMAZING saw nothing wrong with my treatment and kept in constant contact re blood results and tweaking the meds but not forcibly or too much
Then back to the head of, then a nurse and round I go again
Yes, it does seem a bit like a merry go round but it's not " very merry " for the patients just wanting a straight answer to a straight question.
Could your doctor help you with ascertaining exactly what you have been diagnosed with, and what would he suggest is your next step ?
Try and print off the Toft article, it's wordy but relevant in so many ways. The extract I gave is from the third page, left hand side, one third down.
The Elaine Moore reference given under is excellent.
Elaine Moore has Graves Disease and found no help herself when she was going through the system and having RAI treatment in the late 1990's. So, she wrote a book, Graves Disease A Practical Guide, to help other similarly confused patients. She has now gone on to establish a Graves Foundation in the States with well researched, current thoughts, alternative approaches and all things Graves for all Graves patients. It is a well respected website much like this amazing platform with open forums where patients can freely express and exchange opinions, and definitely worth dipping into.
Your comment ties in with what I believe. I kept being told that should my Graves relapse then it was rai for me. I kept telling them no way was I having it. I saw my own GP and said I didn’t want rai and could I be forced to have it and could the hospital refuse to treat me and the answer to both of my questions was ‘No’. So it might be worth speaking the your GP about it.
If you go to your GP before you go read all the advice you’ve been given on here, get things straight in your mind and make a list of all your reasons for not wanting rai.
I am convinced that a lot of the time they do rai it is just so that they can get patients (me) off their books and out to a GP who may or not be prepared to give you enough levo to keep you well.
You really need to try and find out exactly what sort of antibodies yet u have / had.
The issue i have is my GP was trained by my thyroid specialist when he was becoming a dr! So tends to steer over to his side of things! But I can see different GP’s at my surgery I don’t have to stick to the same one so maybe that’s the next step.
That is so true - I selected the Thyroid Expert at my surgery and been left high and dry on TSH only bloods and being called a conundrum and refused any help !
I'm with Graves post RAI 2005 and now self medicating with NDT.
I am reading this thread with interest.. In your shoes I'd get some private labs done for all antibodies to include Hashimoto's as well. It won't be cheap, but at least you can get that Graves diagnosis validated ( or not). Unless I had out of control Graves with thyroid storm or thyroid cancer I would not rush into thyroid removal. Taking L-carnitine (available from many health supplement suppliers) is more effective than carbimazole alone (plus no serious side effects) from what I have read... so you could potentially wean onto a lower dose of carbimazole .. which would not be a bad thing considering your low in range thyroid levels.
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