I am hyperthyroid through a multi nodular goitre. I was on Carbimazole for 18 mths and taken off to see whether it had sorted itself out. On my fourth quarter check after stopping my TSH has fallen and T3&T4 both gone over the top of the range, GP says primary hyperthyroid again. I ask the above question because my Endocrinologist is calling next week and we have to discuss the two options.
I used to lecture in radiation usage and safety and have concerns over the Iodine, especially as I also have a blood cancer and I have read about the affect on the bone marrow. The Endo seems to be pushing me that way but is that just re cost or is the RAI just easier and better?
My own opinion is that hospitals prefer the RAI option as it very easily administered. Swallow pill or drink solution during quick out patient appointment and the treatment slowly destroys the thyroid. Once hypothyroid, which is likely outcome, GP can prescribe Levo.
As you have nodules I’m am surprised they stopped medication to see if it had “sorted itself out” because that’s not a likely out come with nodules, which do not remit. Did you have full antibody testing? If you had a positive TRab or TSI result I can understand why doctors might aim for remission.
If you were previously on a low dose, & stable on medication you can also opt stay on antithyroid medication long term. Doctors often imply this isn’t a option.
Hospital do not like monitoring hyperthyroid patients as it’s expensive which is another reason doctors rush to cease carbimazole or PTU. The risks of the medication remain the same, so there is a continued risk but it is low.
Yes I had antibodies tested, there were none. Both the Endo and my GP have said the same that long term Carbimazole is not an option, think the GP mentioned that it could damage my liver. I had asked what the point was in taking either option to go on Levothyroxine for life when I was very stable and could just stay on Carbimazole.
It may be they are conscious that I have questioned whether my thyroid problems have come on from long term Amiodarone usage prescribed through the same hospital.
Ask your doctors how high is the risk percentage. I would be very surprised if they actually know. Even more surprised if the give you a precise answer, even if they did know. They are repeating what they are told. There’s not many studies researching it.
This article for example refers to PTU which in 2nd option because of the increased risk to liver. The incidence is 1:10,000 for adults. The risk is lower for carbimazole.
“Reports of liver necrosis and liver failure associated with propylthiouracil are rare and estimated to occur in 1:10,000 adults and 1:2000 children.3 Carbimazole which is metabolised completely to methimazole has been rarely associated with intrahepatic cholestasis.”
If carbimazole is such a severe risk to liver, presumably doctors monitor levels very frequently? How often were yours checked? in over 3 years mine were checked 2 when first diagnosed.
The other risk is a drop in white blood cells called neutrophils or granulocytes causing agranulocytosis. It is a rare side affect in some & not caused by an accumulation of taking the medication over time. So risk is the same today as in the weeks you began medication.
I found this article saying the incidence of carbimazole induced agranulocytosis is placed at 0.3–0.6%.so it is low. Those on 30mg per day seem to present higher risk.
Thank you I will read up. Forgot to say that Carbimazole is contraindicated with the chemotherapy drug Hydroxycarbamide I take daily for my blood cancer. My GP, Endo and Haematologist worked very closely together titrating the Carbimazole.
HiHe has repeatedly said at each quarterly telephone appt that RAI is his suggestion as it can be done at our local hospital pretty quickly. Thyroidectomy is not usual and there would be at least a year wait and at a hospital about 35 miles away, he seemed to be putting obstacles in the way.
I am calling my Haematologist today and have written to Blood Cancer U.K. for their thoughts.
Hi,I had radioactive iodine treatment about 10 years ago now this appears to be the preferred treatment by the doctors. It appears to be easier to treat an under active thyroid than an overactive thyroid which is why they prefer radio active iodine treatment . That may be the case for some people I am not sure I can only share my experience which is that I have not felt any better having radio active iodine treatment and in fact have felt worse., mentally and physically.
I did not have nodules but Graves’ disease. Staying on carbimiazole was not an option as for me I was advised it would put strain on my heart.
I'm sorry to read your comments and I deeply regret having RAI treatment but wasn't even given an option. though well on the AT medication.
I think there are hospital restrictions and medical dogma which I'm afraid are not necessarily patient focused as current thinking is suggesting long term AT medication a better outcome for the patient.
After all we are looking at an auto immune disease with the thyroid simply being the victim of an attack from an immune system response, likely stress and anxiety driven.
The thyroid is a major gland and without a thyroid you'll likely need full spectrum thyroid hormone replacement which currently mainstream medical are not prescribing on the NHS.
nor running the appropriate blood tests to identify if you have a problem converting the T4 thyroid hormone replacement into T3 the active hormone that is needed in every cell within your body.
Hi,We’re you not given the option ? It was offerers to me along with the operation which could have damaged my voice box but of course you listen to what the doctors say and RAI was recommended. I actually don’t think they know even now my doctors are useless and have little or no knowledge re thyroid issues and are not very empathetic to the individuals situation which is not very person centred care.
I found myself in an every decreasing circle of wellness and after over 2 years of going around various O/P departments all that was found was a low ferritin level and I was referred to as a conundrum by my doctor, the thyroid lead at my surgery.
I started researching low ferritin, and ultimately fell into the forum.
It's now 6 years later, I am not housebound and have my life back, but am having to buy my own full spectrum thyroid hormone replacement and running my own blood tests.
The yearly TSH thyroid function test that the NHS offer isn't enough, as we need a T3 and a T4 reading alongside the TSH and we to need to see, all 3 results together, in relation to each other.
Maybe the NHS are trying to save money by running just 1 blood test as opposed to the 3 you need but this 1 test is a total waste of time and money - last time I looked I think it cost just under 1 pound to process one blood test - now I arrange my own tests and mind my own business.
The TSH was originally introduced as a diagnostic tool to help confirm a diagnosis of hypothyroidism and was never intended to be used once the patient was on any form of thyroid hormone replacement.
I believe my health and wellbeing has been seriously compromised by having ingested RAI though no one within mainstream medical will confirm or deny my suspicions :
I underwent a full thyroidectomy six months ago for graves disease. RAI wasn’t an option for me because of the size of my goite, not sure if your nodules would influence that decision too?
I found it hard to get my head around replacing once problem - overactive thyroid - for another - no thyroid - but I understand it now. I was suffering with all the symptoms of overactive thyroid and it wasn’t well managed by Carbimazol or PTU.
We have had to tweak my levo dose a couple of times while things settle down which is to be expected in first year post surgery. However I feel so much better and am astonished at how I lived with the full gamut of overactive symptoms for five years. I was extremely hesitant to have the op but life has completely changed for me and it was clearly the best decision when I look back at how grossly unwell I was.
Take your time to make the decision, talk to you GP, endo and the surgeon if you can to gather all perspectives.
hello there, sorry you have the complication of blood cancer along with thyroid problems.I have graves disease and am currently on the waiting list for a thyroidectomy after trying carbimazole alone and with thyroxine as block and replace.I have chosen thyroidectomy as I also have TED and RAI can exacerbate this.My son had hodgkins lymphoma a few years ago and now has ulcerative colitis for which he needs daily medication.I know his treatment options for this have been severely limited due to his previous Hodgkins.He cannot take any immune suppressants due to the risk of a relapse of his hodgkins.We always defer to his hematologist regarding his treatment for colitis and they had a conversation when he was first diagnosed.What has your hematologist advised?If I was you that is the route I would take.Wishing you all the best .
Just awaiting a call back from Haematologist. They put the brakes on the Endo when I first went onto Carbimazole so I am sure they will want input into this.
Think hard and long before you make the decision. There is no going back once your thyroid is removed or destroyed by RAI. I was living a full and happy life on Carbimazole but was constantly being pushed to have RAI just about 4 months into treatment for hyperthyroidism due to a multinodular goitre. I eventually relented and had RAI 4 years ago this month. I bitterly regret my decision as I was hypo with symptoms within 12 weeks of swallowing that toxic pill. My conversion of T4 to T3 is not good and I’ve had no help whatsoever from the hospital that administered it and a useless GP who has managed to make me worse, further complicated by my inability to tolerate the fillers in all NDTs and T3 I have tried so far. Basically, when they destroyed my thyroid, they destroyed my life. I m mostly housebound at the moment.With your further health complications, you’ll have to carefully weigh up your options. Don’t be pushed into something you may later regret.
just for the sake of argument.... What would they do if you declined to have either at the moment ?
I realise your other complications might genuinely mean long term low dose carbimazole is more risky for you ... and i'm not suggesting i know better.... but from reading many posts on here i get the impression they don't 'offer' long term low dose carbimazole as 'an option' to anyone... but when people say they are not willing to have either RAI /surgery at the moment ...then all of a sudden it's fine and they can still have carbimazole . They can't leave someone totally untreated for hyperthyroidism.
refusing either at the moment will presumably mean they try harder to explain the specific extra risks of carbimazole for your situation , if they really ARE concerned it's not a suitable option in your case.
Make certain they are not just using the term preferred as in "preferred by NHS because it's efficient and reduces ongoing monitoring commitments" rather than "preferred for you based your particular circumstances"
Personally I would have a Thyroidectomy by an experienced surgeon. I just don't likethe thought of RAI . I have no thyroid and no problems. When I lived in the UK
the lump on my thyroid was so large it impaired my breathing but they still would not
remove it. I moved to France and within a few months had my thyroid removed.
I also had a FNA in the UK and it found nothing but after having the thyroid examined
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