I am 72 years old and following on from a diagnosis of thrombosis in my legs in 2021, for which I am taking 10mg of rivaroxaban, the Doctors at my local Surgery arranged for me to have blood tests which indicated hyperthyrodism. It was recommended that I should take daily 5mg of carbimazole but as I had no symptoms, I declined to do so until my recent appointment with the Endocrine Consultant. Following this I had a scan earlier this month, which has revealed nodulars on the right .side and I have been diagnosed with mild hyperthyroidism.
The Consultant recommended I should have radioiodine treatment but reading through the various comments here I am not keen to do so. I feel he is reluctantly recommending a 5mg daily dose of carbimamazole and has advised this could potentially be life-long, and risks side effects amongst other things of agranulocytosis and rashes.
Apart from carcinoma in situ and pagets disease of the breasts for which I have had surgery but never taken medication, and the thrombosis in my legs which only occurred after my Astra Zeneca vaccine, I am generally in good health. My blood pressure is low but has always been so, for at least 40 years when it was first taken, and my pulse is normal so I don't think hyperthyrodisim affecting my heart is something to worry about?
The main thing I am concerned about is osteoporosis which I probably already have but it is not surprising at my age and I have recently on my own decision been taking vitamin D pills for this.
Ideally, I would like, if the Doctors agree for my TSH and T4 blood tests to be taken in 6 months time to see if there is any drastic change but if not I would prefer not to take any medication as my husband has mobility and health problems and as I am the only one doing housework, cooking, house and garden maintenance, any side effects caused by medical treatment is a worry.
No doubt I will be asked to make an appontment with my Doctor shortly to start carbimazole as advised by the Consultant, so your advice, if possible as soon as possible would be very much appreciated.
Thank you and sorry to have given you my full medical history but I assumed it should be advised. I would have liked to have included my full blood test results but have been unable to attach them however full blood count was done in 2021 and seems normal.
The result of the latest TSH and T4 taken earlier this month was 0.008 and 19.17 respectively.
I would treat it as it can cause atrial fibrillation eventually. The proposed dose of carbimazole is low although they could also consider using Propranolol. They should always measure fT3 as well as TSH and fT4.
They should find out what is causing your hyperthyroidism, if they haven't done so yet. Have they checked for Graves'? This is done with a test for Graves' antibodies - TRAb.
I wouldn't go for radio iodine if it can be controlled by drugs.
You have a lot going on and totally understand where you are coming from.
An AT drug is generally prescribed once there is a diagnosis of Graves Disease - since Graves is said to be life threatening if not medicated and it works by blocking ones own natural daily production of T3 and T4 and slowly your high levels of T3 and T4 will slowly drop back down into range and your symptoms hopefully relieved.
Since you had no symptoms your T3 and T4 were not that high and in reality hopefully, this could just be a blip and the AT drug at a very small dose might be enough to revert your thyroid hormone rhythm.
Do you have positive and over range TRab or TSI - the antibodies unique to this auto immune disease - or is this a knee jerk reaction as your T3 and T4 are a little ' off
I would suggest that you keep your thyroid and consider, if symptoms dictate, the least invasive treatment option which is the Anti Thyroid drug.
Carbimazole is generally prescribed and there is an alternative Propylthiouracil - PTU for short - should you not get on with the first option.
Whilst mainstream medical go to great length to instil fear as to the AT drug side effects they never seem to talk of the side effects of taking a toxic substance which slowly burns out your thyroid in situ and which is taken up, to a lesser extent, by other glands and organs in the body.
I deeply regret having had RAI thyroid ablation but was not given a choice though well on the Carbimazole as told the AT medication was too dangerous to stay on long term so ingested a radioactive drink instead !! ??
There are forum members who are on long term AT medication for if and when their thyroid levels dictate - and the most recent research is suggesting the longer the patient stays on the AT medication the better the long term options for the patient ;
Many thanks for your comments and I apologise for not coming back to you earlier. My TRaB was negative, with persistently raised T4 between 19.2 and 19.7. and surpressed TSH which has beenconstant at 0. 008. The Serum free T3 level is abnormal at 9.3. (guide range 2.50-6.00 pmol/L. My TSH receptor antibodies is 0.43 and the scan confirmed the Consultants diagnosis of nodules. As you say, he emphasised the side effects of Carbimazole and was not happy about my decision not wanting radioiodine. As my appointment with my own doc is not for another two weeks this gives me plenty of time to consider whether or not to take Carbimazole . I did not mention that because of the thrombosis I am taking daily 10mg Rivaroxaban which helps the blood to flow which is good for the heart. I suppose I just feel as I am 72, who knows what the future holds and it is better to enjoy every day as it comes than waste them on possible side effects of drugs. I will discuss my vitamins, etc with the doc and see what supplements are needed as it appears these affect the performance of the thyroid.
OK then - just be aware that doctors are not taught much about optimising core strength vitamins and minerals and generally doctors only prescribe when you are outside the ranges and some of the ranges are too wide to be sensible anyway.
If you manage to get them run we can explain in more detail where you may need to supplement and if you get them done alongside a thyroid blood panel privately we can support your through interpreting all the results for you.
Thyroid UK - the charity who support this forum - thyroiduk.org - have a page of private blood companies -
I use Medichecks as they also offer a nurse home visit service ( think Blue Horizon does as well - just depends where in the country you live ) as it is a venous blood draw.
I do this yearly now just to keep an eye on everything - as I am self medicating and after RAI which left me more unwell than previously and am 75 so a few extra years on the clock but staying as well as I can be and taking care of myself.
You could print off the links I gave you if you feel pressurised to take definitive action and share this latest research with the Consultant and ask again for his own thoughts on the subject, if you were his mother ?
Many thanks pennyannie for your very helpful info. I will come back when I have seen the doc. In the meantime I love your remarks in the last paragraph which I my well use!
Well, why not, as if he is up to date with the current research he should have already read this research paper for himself and questioned his work ethics.
I definitely would not have radioactive iodine if I was in your position. Once your thyroid has been zapped then that’s it and when I was being offered it I never felt I could rely on my (or any other) GP to prescribe the correct amounts of levothyroxine - or perish the thought T3 to keep me feeling well.
I took carbimazole for a year as part of block and replace treatment for Graves’ disease but I was very ill with it. I was told all the way through my treatment that should it not work I could have RAI! Every time it was suggested I said I definitely did not want it. I kept very well on carbimazole and should I had relapse I would want to carry on with it.
As pennyannie says
“Whilst mainstream medical go to great length to instil fear as to the AT drug side effects they never seem to talk of the side effects of taking a toxic substance which slowly burns out your thyroid in situ and which is taken up, to a lesser extent, by other glands and organs in the body.”
It is twelve years since I had Graves and I now have osteoporosis- unfortunately the link between hyperthyroidism and osteoporosis was never mentioned back then. If I had known I could have taken action to look after my bones a bit better.
I started on alendronic acid (which as far as I’m concerned really is a toxic substance!) I took it for four months and felt so ill I stopped and I’m taking my chances without it.
Your vitamin D will help your thyroid and your bones although it would be an idea to test your vitamin D levels I do that regularly with a fingerpick test - I buy it from this place cityassays.org.uk/ and I adjust how much vitamin D I take depending on the result. I also do a Medichecks test that includes vitamins and minerals, antibodies and a full thyroid check - I gave up trying to persuade my doctors to test vitamins etc and until then I only ever had T4 and TSH tested even now my doctor only tests TSH which isn’t satisfactory. So I pay up and get what I want.
For my bones I take vitamin D3, K2 Mk7, boron a little amount of calcium citrate to top up dietary calcium, magnesium and omega 3 algae oil to help my bones and eat a calcium rich diet plus weight bearing exercise but you sound as if you are probably getting a lot of weight bearing exercise with all the housework and gardening etc that you are doing. You could also look on the Royal Osteoporosis Society’s website - they have very good leaflets on exercise and bone friendly foods that will help your bones.
I also went on a totally gluten free diet after developing inflammatory arthritis a couple of years after Graves.
To get back to your initial question I would try the carbimazole but refuse to consider RAI. Good luck with it all, read up as much as you can about your condition and be clear and firm about why you are making the decisions you are making.
When I was discharged with the threat of RAI hanging over me I went to my GP and asked whether I could be forced to have RAI - the answer was ‘No’, whether the hospital could refuse to treat me if I did refuse to have RAI and the answer for that was ‘No’ too so off I went worry free.
Many thanks for your comments. As my appointment with my own doc is not for another two weeks this gives me plenty of time to consider whether or not to take Carbimazole but I have definitely decided against radioiodine treatment.. I did not mention that because of the thrombosis I am taking daily 10mg Rivaroxaban which helps the blood to flow which is good for the heart. I suppose I just feel as I am 72, who knows what the future holds and it is better to enjoy every day as it comes than waste them on possible side effects of drugs. Your comments regarding vitamins is appreciated and I will discuss these with the doc and see what supplements are needed.
I have a 5cm hyper nodule and had results similar to you when diagnosed with borderline FT4 & higher FT3.
I started on 20mg carbimazole and currently take 10mg, 5mg alternating days.
I delayed RAI which was suggested at first appointment. Carbimazole is offered as a temporary medication, with autoimmune the aim is to control levels until natural remission.
With nodules remission isn’t expected so RAI is recommended early on.
You can stay on longer / life long but the low risks do remain. They are very low.
I’ve taken it for over 4 years.
My specialist discharged me to GP for monitoring as I wasn’t about to agree to RAI soon.
As your FT4 & FT3 are over range I do recommend you start medication to lower into range . The aim will be to lower FT4 & FT3 into range, not to medicate until TSH rises. (Doctors tend to focus on TSH).
My TSH remained suppressed & did not respond to low levels. I also take low dose propranolol, but this is for migraine prevention.
I suspect you may need a higher level than 5mg at some point, but we are different & 5mg may be sufficient long term.
The other option is surgery removing the lobe with nodule.
There is also another treatment called Radiofrequency ablation. This is available at Berkshire hospital. UCLH Also has information on it.
There is alway the hope this will become available in more areas.
See this post which has information about RFA procedure.
Many thanks for your response and apologies for not replying earlier. As my appointment with my own doc is not for another two weeks this gives me plenty of time to consider whether or not to take Carbimazole . I did not mention that because of the thrombosis I am taking daily 10mg Rivaroxaban which helps the blood to flow which is good for the heart. I suppose I just feel as I am 72, who knows what the future holds and it is better to enjoy every day as it comes than waste them on possible side effects of drugs. I will discuss my vitamins, etc with the doc and see what supplements are needed
I was hypothyroid for many years and treated with Levothyroxine for Hashis, until about 4-5 years ago when the results came back that my ranges were out of sync. My Levo was gradually reduced over this time to 12.5mcg a day from the initial 150mcg, which was just ridiculous.
After a referral to an endo who wasn't at all interested and whom I never saw or spoke to, my gp was persuaded to give me another endo appointment with a different hospital.
This one was very interested, took all the blood tests including antibodies for Graves and diagnosed me with hyperthyroidism. She said the Levo dose was laughable and stopped it immediately. She booked me in for an ultrasound scan which showed an enlarged thyroid with several nodules.
I was started on Carbizamole 5mg and I took it for about five to six weeks before giving up due to severe constipation that required admission to hospital.
My options for treatment are now limited to RAI or total thyroid removal as I cannot take the other medication.
She asked me how I felt generally, fast heartbeats, sweating etc which I am not suffering from. She knows I have osteoporosis and had a spinal collapse, hard to say whether some of this could be put down to undiagnosed Graves.
I am 69 and although it is unusual to have Hashi and Graves antibodies at the same time, my own feeling is as long as I am not exceptionally out of range or as soon as hyper symptoms start then I will consider my next step.
My endo is very happy to "watch and wait" to which we both agreed. I am still having blood tests which are mildly out of range but I still feel fine, in fact since stopping Levo I have more energy!
As for the Osteoporosis, precautions can be taken with calcium supplements and there are treatments which could be considered if your bones are suffering.
If you are worried, please ask your gp for a DEXA scan which measures the density of your bones. It's painless and a bit like an xray. Depending on the result and your personal preference it can be treated. There is an excellent forum on HU called Bone Health if you are anyway concerned. They have links to the Royal Osteoporosis Society which is useful.
So, my long winded reply, (sorry,) could be to adopt the same guidance of "watch and wait" if your endo is happy to do so and not be rushed into making a life changing decision just yet.
Many thanks for your comments and apologies for not replying earlier. As my appointment with my own doc is not for another two weeks this gives me plenty of time to consider whether or not to take Carbimazole . I did not mention that because of the thrombosis I am taking daily 10mg Rivaroxaban which helps the blood to flow which is good for the heart. I suppose I just feel as I am 72, who knows what the future holds and it is better to enjoy every day as it comes than waste them on possible side effects of drugs. I will discuss osteoporosis and my vitamins, etc with the doc and see what supplements are needed. I do n ot think my endo will be happy with the "watch and wait" approach, especially as he was unhappy at my decision to reject radioiodine treatment but it is my life not his. I am glad to hear you are feeling well without any further treatment at the present time.
There is evidence that TSH promotes T4 to T3 conversion, especially in tissues that rely on it. For this reason I would always recommend people do bring TSH up if they can. This isn't always possible but if it is I think it is a good idea.
Just to confirm My TRAb was negaive with persistently raised T4 = 19.7 and surpressed TSH less than 0.008 and the scan confirmed it was due to nodulars on the right hand side. My vitamin D was 26 nmol/L which is slightly low but I am now taking vitamin D. My total white cell count is 5.5. 10*9/L av range 3.90-11.1010*9/L.
I notice that there are many manufacturers of carbinazamole and wonder whether any studies have been made to show which have the best and most negative effects? I am seeing my daughter this weekend and will discuss this matter with her as very interestingly she also has an enlarged thyroid, and although she has not had a scan she very recently had a sample from it taken, the result of which is awaited. I wonder whether this is hereditary or maybe a result of a recent health trauma she has suffered. If interested I will reveal her result here? I was particularly interested in Bluebells comments bearing in mind her results appear similar to mine and as at the present time I consider myself to be in good health with good energy levels I feel inclined to take a "wait and see" which my Endocrine Consultant would not like but I appreciate it is not his choice. Thank you again for all the comments made and I appreciate everyone is different especially as to age and how drugs affect them. It appears my decision not to accept the radioiodine treatment which was being pushed by my Endocrine Consultant is right at the present time however it appears the use of carbizamole is supported by the commentators here. I will submit my decision later.
Nor everybody tolerates Carbimazole - there is an alternative - Propylthiouracil - PTU - for short - I 've only just read that you are finding this first AT drug option causing you symptoms.
First off - ask to try the PTU - as many find it much better than Carbimazole :
Please do not be put off staying on the At drug until you try the alternative as it has to be the least invasive option - which is what makes more sense for you.
just tagging those who relied so they will see this response yvonne (they don't get automatically notified unless you use the reply box directly underneath their reply)
Sorry tattybogleI thought I had sent my thanks on receipt but the internet connection must have dropped when I hit the Reply button. As my appointment with my own doc is not for another two weeks this gives me plenty of time to consider whether or not to take Carbimazole . I did not mention that because of the thrombosis I am taking daily 10mg Rivaroxaban which helps the blood to flow which is good for the heart. I suppose I just feel as I am 72, who knows what the future holds and it is better to enjoy every day as it comes than waste them on possible side effects of drugs. I will discuss my vitamins, etc with the doc and see what supplements are needed as it appears these affect the performance of the thyroid.
Q) I notice that there are many manufacturers of carbinazamole and wonder whether any studies have been made to show which have the best and most negative effects?
A) I never seen research about this, who would investigate? Not manufactures. I’ve been given different brands and not had any issues, others might have a side affect to an ingredient which means what is good for 1 might not suit another.
Q) I wonder whether this is hereditary
A) thyroid nodules are thought to run in families, but this might be because nodules are common with autoimmune and this can be hereditary. Suspect It can, my nodule isn’t autoimmune & I have parent who was told they were hyper but had surgery very early on, they weren't told cause.
With my nodule the levels rose very gradually and I adapted to symptoms without realising. I think it would have been better to control thyroid levels sooner than later. My levels weren’t super high but the longer the TSH is left suppressed the longer it might take to recover.
Hope your daughters test comes back with all clear.
This is a link to the actual products in the UK (I've only included 20 milligram tablets - you can click around and get to see, for example, 5 milligram tablets). There is a second page!
Hi Yvonne, I am also hyperthyroid. I was told to take carbimazole 3 and a bit years ago. I took it for 6 weeks and then came off it. My levels normalised. Since then I have been a yoyo with slight increases and then back to normal and so forth. The thing that I seem to be able to attribute this to is gluten. Every time I deviate and eat it my levels rise and then when I cut it out all together they decrease.
However this time around I have increased (was deviating from my diet) and my levels have increased significantly so I am trying to decide whether or not to take the carbimazole again. My advice would be to go with your gut and make sure if you are then you get regular blood tests every 6-8 weeks if you can.
Medication is good when used the correct way but I am a strong believer in nutrition has its place too.
Hi Thyroid-gluten, Thank you. I am a lover of bread, cakes, and cereal and would not be surprised if this adds to my thyroid problems and I like your advice to go with my gut! I am having further blood tests next week which will be interesting to see . I wonder what you will decide to do, everyone is different and in addition to believing in nutrition, which I do, although like you I may not always follow the best diet, I also believe in positive thinking but appreciate if one is suffering this is not easy.
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