Hi, new to the forum. Diagnosed with Graves/hyperthyroid in 2017. Carbimazole didn’t work long term. Had RAI 1 week ago and now my body aches/heart rate up slightly and generally just feel grim. Just wondering if anyone else had similar experience post RAI in the immediate weeks following? I know if I speak to the drs/endo I will get little back as have been told repeatedly symptoms are in my head. I was told my graves was a bad anxiety attack until they did a blood test and I was externally over active. Anyway any confirmation I’m not crazy/this is ‘normal’ would be great.
Not sure why it’s taken me 3 yrs to seek out a thyroid community.
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Prkr33
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No you are definitely not crazy to experience those symptoms.
What is your normal pulse and how fast has it become?
I have read that a period of hyperactive can occur & is caused as the thyroid which has been destroyed is circulating in your system.
It can take months to get the full effect, and ultimately become hypothyroid but it's possible you are currently hyper so probably worth contacting your Endo for advice.
It’s usually high 50’s/low 60’s when thyroid is under control. But it was 140-150 when I was first diagnosed. Resting has gone up to 80’s in past couple of days.
Will see how I feel over next couple of days and try and get in touch with endo.
I find overall my heart rate is well correlated with thyroid levels, but doctors show little concern unless considerably out of range and will happily explain away with anxiety etc. I think the best approach if to say well if it continues or worsens - what is the plan? Then they are less likely to fob you off with same excuse next time.
I have no other health issues that I know of and have been told me eyes are ok although they are quite dry and sensitive to light when I'm overly suffering with hyper.
Be vigilant with your eyes and seek help for any issues. Dry eye and light sensitivity can be associated with thyroid eye disease. Even a opticians can advise on eye drops ect and write a letter to doctor for a ophthalmology referral. Sometimes they are more helpful than GPs, in some uk regions certain high street optician are ‘responsible’ for all eye related issues. GP advise patients to self refer and the optician are expected to assess and liaise directly with local hospital ophthalmology.
RAI can worsen the condition.
Was this all discussed with you by your doctors?
There a little information about it in this leaflet (link attached) many hospitals often give this leaflet out for information on RAI treatment. Sometimes it’s all they do. I was given this leaflet and told to sign to consent to have it done. I decided to wait but given you plan to have more children I can see why you would not want to be on carbimazole long term.
not discussed with me. I was given a small booklet about keeping away from people/my daughter/significant other for 2 weeks and sent on my way.
I refused the treatment at first as my daughter was too young to understand mummy not being able to hug her and waited until she turned 5 / was a little more independent.
I totally relate to that, my children are older but have learning disabilities and so this is my concern with them. I was also told by the nuclear medicine department (after lots of phoning between departments) I wouldn't get specific safety precautions until the time of the procedure which is not very helpful.
Those eye symptoms can also be caused by thyroid eye disease - TED - and the hospital should refer you to a specialist TED eye clinic for monitoring :
I developed TED after RAI and whatever you use to sooth your eyes please make sure that the lotion, potion or drops are preservative free and you may be lucky and get these prescribed for you.
You may also find you need to switch brands once in while;
There are all sorts of lubricants some heavy duty for night time use, whilst others are just single use droplets to use throughout the day as needed, though you may find if you use contact lenses that these will exacerbate your symptoms.
That's really useful. I have been prescribed bog standard eye drops before from my normal optician as they said my eyes were dry. The most the endo did about my eyes was look at them to check they weren't overly bulging and said she thought they were fine 🤷♀️.
I believe that many people who develop problems with their thyroid gland are unaware that the treatment they are getting from the medical professionals may not be helpful for them personally. I wouldn't have thought there was any online help/support (there wasn't then) as I would have assumed doctors would be knowledgeable.
I had never heard of hypothyroidism, so it came as a huge surprise (when eventually diagnosed) that I had to diagnose myself. One day after being told by GP that I had nothing wrong with me and that all my results fine.
Members who've had RAI will respond when they read your post.
My endo has repeatedly claimed symptoms I feel are unrelated to my thyroid. Like ongoing palpitations and low immune system/vitamin D deficiency. But the more research I do myself the more I realise no one really has a clue. Everyone’s body reacts differently. It is very frustrating and lonely constantly being made to feel like you are crazy or there could be something else wrong with you. If I didn’t want another child I would have seriously considered just staying on the carbimazole but I was told due to my age I couldn’t be on it long term.
Have you had other key nutrients tested? Such as ferritin, folate, b12? They are often trashed when you are suffering with Graves and should be optimal for thyroid health.
Not to my knowledge? Is this something they usually monitor? Or would I have to ask for this in addition to what they would usually monitor (TSH levels)?
My specialist did all but vitamin D (once) when I was diagnosed. they should be monitored but no they do not alway get monitored.
TSH total inadequate to measure your thyroid levels. You should always have FT4 and FT3 tested. How often were your tested when you were medicated with carbimazole?
I’m still tested 6 weekly which is standard when on carbimazole. If you were stable they may have been happy to leave longer testing?
Recommend if you don’t already you start to keep your own test record and diary of any symptoms. Doctors glance at results in isolation, comparing symptoms & looking for trends over time “the whole picture” is rarely reviewed by doctors and we have to be proactive and “do it ourselves”.
Always obtain actual results, even if you are told “in range”. It’s shocking that GPs & even specialist do not always do a full thyroid function, the lab decides if FT4 is tested based on TSH. Sometimes a Graves diagnosis is not confirmed with full antibodies testing, treating all with low TSH with trial of carbimazole and RAI.
Try and obtain ALL your past results. Arranging online access is ideal as you can view results without involving doctors and receptionists, but can take a little time to set up. You are entitled to your own record so contact the surgery reception and obtain an actual print out of results (With ranges as they vary between labs). Most Endocrinology departments have secretary’s and you can contact them for as hospital results as they wont appear on the GP system.
If you asked this endo to list what unpleasant symptoms people can have, I wonder what the response would be? I think they do not believe we'd have any, so the assumption must be that whatever symptoms we have is nothing to do with our thyroid gland. They never test FT4 and FT3 both of which should be near the top of the ranges.
All of our vitamins/minerals should be optimal too and especially if they are low, i.e. B12, Vit D, iron, ferritin and folate.
If B12 is very low, a check for pernicious anaemia should be made. We could have pernicious anaemia.
You can also become a member of Thyroiduk who is behind this forum and who is trying to change the attitude of the professionals, few who seem to knw very much. The more members, the stronger the 'voice' we have to try to change attitudes of the professionals.
Just in case you are unaware of the procedure when getting a blood test for thyroid hormones:-
Always get the earliest appointment (even book weeks ahead). TSH is highest early a.m. and that's what the majority of doctors seem only to notice. It is also a fasting test (you can drink water). Don't take thyroid hormones before test - take afterwards and swallow with one full glass of water.
A Full Thyroid Function Test (FTFT) is:
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Many have to get a private test if GP (or lab he uses) wont request the 'frees'.
I think this should be done when we are first diagnosed but we don't often get a 'full' test. Also all our vitamins/minerals have to be optimal too. Vit D, B12, iron, ferritin and folate.
Thank you so much. I'm going to call the Dr and endo secretary tomorrow for access to all my previous results.
Your advice has been invaluable. It's such a relief to hear from other people who have suffered similar issues and hit similar brick walls with medical professionals.
Well, it took me about 11 years after RAI thyroid ablation to find this forum so I shouldn't worry too much about your " state of mind ' !!!
Graves Disease is auto immune so simply cancelling out the gland it attacks, doesn't actually solve the problem, but of course, now you will become hypothyroid the other end of the same spectrum, and your symptoms will probably not become life threatening, as they may well have been when hyperthyroid.
It is essential that you are dosed and monitored on T3 and T4 blood test results and not just a TSH blood test, which currently, in primary care, seems to be the only thyroid blood test allowed.
The TSH in Graves patients is known to be an unreliable measure of anything and your feedback loop is now broken, as you don't have a thyroid gland, so this quick look, quick fix TSH blood test is not to be relied upon, and you must be dosed and monitored on your levels of T3 and T4.
T4 - Levothyroxine is the treatment option used by the NHS for hypothyroidism.
T4 is a prohormone and your body needs to be able to convert this into T3 which is the active hormone that the body runs on and is said to be about 4 x more powerful than T4.
Your ability to convert the T4 into T3 can be compromised if your vitamins and minerals are not optimal and suggest you maintain your core strength of ferritin, folate, B12 and vitamin D at good levels, possibly self supplementing, as you may well be in range but not at a level that is optimal for you.
Ideally your T3 and T4 need to be in range and balanced and most people tend to be well when both these vital hormones are in the upper quadrant of their ranges. It's a bit of a balancing act as, again, just being in a range somewhere, doesn't necessarily give you back your health and wellbeing.
Since your treatment was only a week away it is early days, but ultimately your thyroid will be burnt out, and disabled in situ, and you will become hypothyroid and the NHS will prescribe Levothyroxine, if they haven't already done so, possibly at varying amounts, as your thyroid function diminishes.
If you don't know of the Elaine Moore Graves Disease Foundation website I found it very useful and is all things Graves for all Graves sufferers world wide. Elaine herself had RAI for Graves back in the 1990's and so started her research into this poorly understood autoimmune disease.:
I also found a book, written by a doctor who has hypothyroidism extremely interesting : Barry Durrant - Peatfield writes in an easy to understand, sometimes funny manner and his book Your Thyroid and How To Keep It Healthy became my go to when I started repairing myself :
There is much to learn and the Thyroid uk charity website who support this forum also offer valuable information about all things thyroid and worth joining.
Fabulous I'm going to look into Elaine Moore and the Barry Durrant-Peatfield book recommended. I naively thought I'd have the RAI, be prescribed thyroxin and that would be the end of it 🤦🏼♀️
There's another book too, and it is called 'Tears Behind Closed Doors' and about the patient's life before being diagnosed.
The woman, Diana Holmes, it is her 'life story' (unbelievable) who then went on to assist Dr Gordon Skinner to try to change attitudes of the medical professionals towards dysfunctional thyroid glands.
actually I also have that other book as suggested by another forum member and think both are on the Thyroid uk website.
I also purchased Elaine Moore's first book but it was a bit heavy going as she was/is a medical researcher and I think written more from a medical perspective. She now has several books published and find her website in smaller, less challenging chunks -
However I am dyslexic and at the time my cognitive function was severely compromised.
Onwards and upwards - are you still under the hospital ?
“I naively thought I'd have the RAI, be prescribed thyroxin and that would be the end of it”
I don’t think you are naive, I think that doctors deliberately lead you to believe this. In the vast majority of cases patients do not have any significant issues and once stable on synthetic thyroxin are well and never need to seek the support of a forum again.
I hope this will be the outcome for you. Learning what you can and being as well informed as possible will help you get the right treatment and care to stay well.
Me too 🤞🤞. Think there is a distinct lack of understanding from medical professionals about the lived reality of many who suffer with thyroid conditions. Trying to appear normal on a day to day basis is a constant struggle.
Hope you are not overwhelmed at this stage, but I had another point from your comments you made.
Is your GP treating your vitamin D Deficiency? NHS obliged to only treat to get you into range (aim for optimal) & then they do not subsequently monitor.
I was found to have a vit D deficiency in March after I insisted on the test because I kept coming down with viruses. I had to ask them to recheck my levels in the summer after a 10 week course of prescribed vit D and they were high then. But since then I haven't had any checks and I've been coming down ill left right and centre with viruses and tonsillitis and ear infections. They claim there is no correlation with my graves but I don't buy that. But there's just a great deal of apathy from the drs
RAI is known to " trash ' vitamins and minerals " so I think you need to get ferritin, folate B12 and vitamin D tested and post the results and ranges back on here. for advice.
They may well be in the range somewhere and considered as " ok " and not qualify you for a NHS prescription but these are critical and need to be at optimal levels for good health and conversion of Levothyroxine T4 into T3 - as previously detailed.
If you post your results with ranges on this forum you will be advised according to the type of range and measurement used. Above midrange is the aim for some nutrients.
It’s not a good idea to start many supplements to see if it helps.
Some are unnecessary & can be harmful / toxic if taken in excess. eg iron, calcium.
Need to test first and introduce gradually. Leave a gap of 2 weeks between new supplements in case you react to one.
Do you currently take any other supplements eg multi or herbal. Some contain ingredients which is not helpful. Often they contain iodine including ones recommended for thyroid but are not recommended either.
Ask first, as can get expensive, the main ones for testing is folate, ferritin, b12 and vitamin D.
If they refuse you might get them to agree if you say your have followed some NHS recommended links to support & information site and they recommend a number nutrient testing including....
If you still hit brick wall, there are several private companies offering thyroid and vitamin packages, some offer discounts. I’ll search for a post which include info about them.
Thank you so much. Feel like I need to go and raid a Holland and Barrett after reading that! 🤣
I wish I had looked into this more 4 years ago and not left it to the drs to know what they were talking about even when feeling awful. I'd be very surprised if I wasn't deficient in at least 1 area (well I know I have been in Vit D at least).
Would you recommend waiting a few weeks until my RAI has had time to do whatever it's doing before requesting additional vitamin test or should it not matter?
Do you have a follow up TFT due following your RAI? I would hope that is prearranged. Try and get them included when you have that test.
I edited a post of mine above you may have missed it when I wrote, It’s not a good idea to start many supplements all at once to see if it helps.
Some are unnecessary & can be harmful / toxic if taken in excess. eg iron, calcium.
You do need to test first and introduce gradually. Leave a gap of 2 weeks between new supplements in case you react to one.
Do you currently take any other supplements eg multis or herbal. Some contain ingredients which is not helpful. Often they contain iodine including ones recommended for thyroid but are not recommended either.
There is a lot on information about vitamins and supplements on here, some are better than others, you must do your research on in.
So sorry I didn't reply to your question - must have missed it ??
Anyway, through reading up on here and on personal experience I feel at my best when my ferritin is up at around 100 with vitamin D at around 100, with folate @ around 20 and with active B12 @ 70 + or serum B12 @ 500+ :
I supplement these on a daily basis along with adrenal glandular and see this now as a life long regime to repair the damage the RAI treatment has done to my body.
Hi, just want to say, its not in your head, bless you, i had it done 2 years ago, and it didn't take me long before I went under and put on levo, i too had heart palpitations, and fast heart rate, they just gave me beta blocker, however, honest some people are ok, some people find it hard to get it in range, like a yo yo, you know just how you was on carbrimazol. so its a waiting and monitoring game,in the process you learn a lot. from others who have done a lot of research themselves, I hope it all turns out well for you. also there are lots of groups out there. that will give you lots of support,
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