as the title suggests, I am 36 years old. I had 3x relapses of hyperthyroid (Graves disease) over the last 7 years, I have been using carbimazole as treatment. The first treatment lasted almost 2 years, the second is 1.5 years and I just started the 3rd treatment. The consultant is suggesting this time we need to go for definitive treatment i.e Radioactive Iodine. I am a bit nervous about it because I am worried about how is my life will be with the Thyroxine.
My question to those who are using Thyroxine for a couple of years is, how often do you need to test and adjust your dose? is it easy to get the dose right? do you feel you are taking control or thyroid is controlling you? (which is what it is currently doing to me).
look forward to learning from you.
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Nile_8
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The advised schedule is to complete a blood test four to six weeks after the treatment.
Then every one to three months until stable
Once stable once a year to check your thyroid hormone levels. Most become hypothyroid not all a small percentage need repeated treatment as 1st treatment doesn’t reduce enough thyroid.
Some people do have issues getting the right level of thyroxine. This seems to be for 2 main reasons.
1. Insufficient replacement
GPs manage hypothyroidism by TSH the pituitary hormone and often labs do not test the thyroid hormones FT4 & FT3.
After a period of hyper the TSH is not reliable and can appears in range when FT4 & FT3 are very low. This results in inadequate replacement levothyroxine.
2. poor T4 to T3 conversion.
Some report that after RAI or due to being hyper the nutrient levels are poor this can be a reason for low FT3 levels. Some still have difficulties converting, even when nutrients are addressed. NHS virtually ban use of synthetic T3.
Do you have eye issues? RAI can worsen thyroid eye disease.
You have option of remaining on carbimazole, the risk is the same now when you began taking the medication. Doctors sometime imply is causes damage (over time) to liver or white cells but these are rare reactions and not cumulative. You should also have option of surgery.
Doctors recommend RAI as it’s easily administered, monitoring hyper is expensive, so only proceed if you are comfortable with decision as the treatment is not reversible.
Thanks for your reply, it is much appreciated and I can tell you have certainly opened my eyes to issues I wasn't aware of. I wasn't aware RAI worsen TED, I visited the optician last week, they said there are no issues, but I am still waiting for confirmation from ophthalmist.
I get on well with Carbimazole but there is a concern about its effect on liver functions so I don't know if I could continue like this any longer.
Endo has started pushing for RAI, but from your reply about the TED and what I have seen about RAI being the cheaper option that why the NHS is pushing for this option, I certainly need to think harder about this.
Is there a concern with your liver function test? Often medics do not routinely test liver function unless there are symptoms. I have not had liver function test since commencing medication 3 years ago.
10% require further dose. So these are the patients in which RAI did not resolve the hyper levels (relapse).
Do you obtain your blood test results and track your progress? Doctors often adjust carbimazole too slowly / too fast. If not kept in range or too low you will feel unwell.
Unless you already have signs of the liver problem associated with carbimazole ?.... then the risk of getting that problem doesn't increase over time. You are at no greater risk of it happening whether you are on carbimazole for 1 year or 10 . (There is a research study proving this on here somewhere , can't remember where just now )
Even if it does happen , and carbimazole has to be stopped .. there is an alternative anthithyroid drug that can then be used called' PTU '
I think occasionally RAI doesn't do the job fully, so there can be a relapse and a second dose is given ... but it usually does work effectively first time . ( might take a while to work though , it's a 'slow burn ')
I lot of the 'RAI is the preferred option' stuff you are advised about RAI is more to do with it being the preferred option from an 'economic' and 'consultant list' point of view ..... it's about turning long term Endocrinology patients who need frequent appointments to monitor carbimazole into cheaper 'GP only' patients on Levo who only 'need' 1 blood test a year.
Most people are OK on Levo .. but not all .. and the endocrinologists don't seem to be telling anyone that when they are discussing the 'risk factors'.
They also seem to be forgetting to mention the poor outcome (due to short term increase in TRab) for TED patients.
So do make sure you only have RAI if YOU think it's in YOUR best interests.
You might also want to read this: it's by Professor AD Toft . respected consultant endocriniologist , past president of the (? BTA or BTF ? ) .. and he was HM the Queen's physician when she was in Scotland . rcpe.ac.uk/sites/default/fi...
" ..........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
Graves is an auto immune disease and your thyroid is a victim of an attack from your immune system - quite why your immune system has decided to go ' on the attack ' is something only you can try and work out :
Graves is said to be stress and anxiety driven ?? - looking back at my own situation I know now why I was diagnosed Graves in 2004 and not knowing anything back then, followed the advice and had RAI thyroid ablation the following year.
If you don't know of the Elaine Moore Graves Disease Foundation website you miht like to dip in, and here are various sections dealing with all aspects of this poorly understood and badly treated AI disease.
I was getting by on T4 monotherapy for around 8 years, but looking back, dosed and monitored in primary care on just the yearly TSH thyroid function test and when I questioned my worsening symptoms prescribed anti depressants.
I spent 2 years n an ever decreasing circle of wellness and then after finding this amazing forum a further 2 years improving my vitamins and minerals and going around various O/P departments and getting nowhere and when I managed a referral to endocrinology I was refused an other treatment option as my TSH was too low and told I was overmedicated.
I have been self medicating for around 4 years now and as well as I'm going to be after ingesting this toxic substance, which currently research is suggesting is not a good treatment option for the patient.
If push comes to shove I think a thyroidectomy a cleaner, more precise treatment, though of course, as with any surgery it carries risks, and it's a horrible place to be if your options are only to have your throat sit or drinking / ingesting a toxic substance, as it is very much like being between a rock and a hard place.
Please do your research - and if you have the option of remaining on the AT drug is these periods of unwellness - so be it :
Thanks for your reply, it is really great to see the support in this forum. I am sorry that your journey has been rocky with overmedication and anti-depressant. I hope you are well now. I have a similar story where I was overmedicated to the point my thyroid swung from hyper to hypo within 2 months.
I have been asking about the causes of Graves Disease? and you are right about stress and anxiety because my first diagnosis came at a difficult time for me. I was really stressed.
as you mentioned, monitoring Thyroid functions has proven difficult and with COVID things just got worse, when the symptoms started the 3rd time, I had to call the GP practice almost daily for a week to get a chance to speak with the doctor so they can refer me to the endocrinology department.
I applaud you for managing your dose by yourself. do you do any blood tests before or how do you decide to adjust your dose? I have been looking for ways to do FT3, FT4 and TSH privately so I could be monitoring and make my own decisions. I heard many stories of over/under medication after treatment, so I want to be prepared before I go for the definitive treatment.
As you said, surgery seems to be the reliable option but with Covid and backlog, I imagine it will take years to have surgery. I have a call next week with Endo will see what is the plan.
Well, turn this to your benefit and play for time as Graves will eventually burn itself out :
All the RAI does is burn out your thyroid faster than nature would :
But RAI is a toxic substance and known to be taken up, to a lesser extent in the body by other glands and organs and I don't known if your eyes have been affected but RAI can cause or exacerbated thyroid eye disease.
Which is why i believe, if your Graves is intolerable and your QOL seriously impaired, a thyroidectomy a cleaner and more precise option.
But the underlying Graves AI disease is still there, and all you now have is Graves and hypothyroidism which in my experience is more debilitating.
Graves is said to be life threatening if not medicated and dosed in a hospital setting as not all doctors have " thyroid " knowledge :
This all costs more money so the quick fix option is RAI thyroid ablation and a discharge out into primary care.
I was never over medicated in primary care, I was on T4 monotherapy the cheapest option available on the NHS. and monitored and dosed on a TSH which is totally wrong, but which seems to happen to patients in primary care.
I have had to pay to get my health back on track as the NHS obviously didn't see me as a viable candidate for other, more expensive treatment options that I now have to fund myself, as I do my own blood tests.
I don't need applause - all I need is the appropriate hormone replacement for a treatment I deeply regret as the long term consequences of RAI hang over my head and body and the NHS were happy to leave me housebound and referred to me as a conundrum.
If you go on the Thyroid UK website who are the charity who support this amazing forum you can find private companies who run the correct blood tests and then, if needing an explanation, just start a new post with the results and ranges and you will receive considered opinion.
Any new information means a new post especially after around 24 hours as this rolling screen can get very busy.
P.S. Having just read other people's replies please get referred to a specialist unit who deal with TED and generally have an endocrinologist on site and if you go across to the charity website : tedct.org,uk - you will be signposted you to your nearest specialist centre.
There is an NHS lab service ( in Exeter) that does inexpensive TSH /fT4 /fT3 tests under £30 for all 3 . (can be as little as ?£26 if use ThyroidUK discount i think) It is a postal service that uses DIY 'fingerprick' type tests ,(you do need much more than one drop of blood though )... many people here use them in order to get an fT3 done with fT4/TSH.
It's called "Monitor My Health ".
a link to it is found in many of slowdragon or seasidesusie replies, or on ThyroidUK page.
hello there, I have graves disease(diagnosed 2018).I have been on carbimazole only(titration method) and am currently on carbimazole and thyroxine(block and replace).I have had one try at remission which lasted 2 weeksI also have TED.I am currently on the NHS waiting list for a thyroidectomy.I have given this alot of thought and learned alot from this site.If you would like to read my full story you could click on my name and I have put my upto date experience on my profile.My advice is to learn as much as you can then you can make the right decision for you.Best wishes to you.
Have you personal experience of using natural herbs to successfully treat hyper levels?
Some find natural remedies such as this an ideal compliment with antithyroid medication and are helpful at relieving some symptoms but they do not replace mainstream treatment and offer a method to reduce high levels of thyroid hormone.
Beware that a number of natural remedies also includes iodine and should also be avoided unless a medical profession has tested iodine levels. Iodine deficiency is unusual.
Selenium is a good stand alone supplement to take for thyroid and especially recommended for eye issues (TED) 200mcg, for 6 months the reduce to 100mcg.
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