Just managed to talk my consultat about not having RAI and Give the block and replace another go. He said if I have another relapse that i will have to go for it. Why do they push RAI over block and replace? Surely as we know that once it's done it's done and no going back. I am 42 and dont want to give up trying for it to settle down and as people have said they might find a cure. Heres to lots of positivity to us all and hope everyone is staying safe.
3rd time lucky??: Just managed to talk my... - Thyroid UK
3rd time lucky??
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Silverlion
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You can listen to your doctor's advise but it is up to you whether or not you take it. One of the 1st things my Endocrinologist suggested to me was that I either had my thyroid removed or RAI. Here I am 10 years later still with my thyroid and I don't regret my decision at all despite having a thyroid storm last year. I know a few people who have been taking carbimazole for over 10 years and they have regular blood tests and feel ok. You can read my story on my profile page if you are interested.
Just to add a lot of people now regret their decision to have their thyroid removed or RAI because they are now struggling to get proper treatment from their doctors.
Have you seen Elaine Moore's site? She had RAI several years ago and she helped me get diagnosed over 10 years ago when my GP kept telling me I was suffering from the menopause.
There are also a "lot of people" who haven't for one minute regretted having surgery or RAI, for them being rid of the hyper problems is a huge relief and treatment is not an issue.
Yes if they have cancer etc. I however don't have cancer because then I would have made a different decision. Are you are feeling well at the moment? because if you are you are one of the lucky ones. I know people who are struggling because they need T3 but are just taking Levothyroxine.
I am very well thanks, my late husband needed T3 so I fully understand some people struggle with treatment but that applies with all health problems and the positives of certain treatments shouldn't be dismissed just because it doesn't work for some.
When I was first diagnosed with Graves’, three people I know mentioned they had RAI (all many years ago) and that they have been fine since, although all now on Levo. Two had no problems with their treatment, the third needed a second dose. A fourth friend achieved remission following a course of anti-thyroids. None of them is on this site because so far as they are concerned, their thyroid problems are under control. This was however a random selection of people I know, who for one reason or another became aware that I had thyroid problems.
If we are going to advise people to take /not take a particular course of treatment, mentioning our own experience is fine. However, if we are suggesting that anyone who feels well is ‘one of the lucky ones’, we should provide statistical evidence to support this.
The trouble is the well ones don't need advice. I was having my hair done a while ago and there was this woman with lovely thick hair. I told her I used to have hair like that before I got thyroid disease and she told me she was hypothyroid and felt fine. She was however very overweight but she had been on the same dose of Levothyroxine for years. My hair will never be the same after having two lots of extreme hair shedding when I was ill and I got no help from my GP at all.
Also I only share what I have experienced myself and what Elaine Moore told me on her site.
I just had to correct a typo lol my thyroid brain is not working today!
I’ve found stuff of interest on Elaine Moore’s site myself, but she doesn’t always support what she says with references or statistics. Her article on RAI makes assertions, but does not support with evidence. She refers to ‘recent long-term studies’ but does not actually cite anything specific.
I can’t get the full url to this article to post for some reason, but if people want to read it, look for ‘radioiodine’ under Graves’ articles on the Elaine Moore site. elaine-moore.com
Don’t get me wrong, I understand the preferred option for many people who don’t achieve remission will be long-term low dose Antithyroid treatment. But for some, their thyroid levels remain unpredictable or too high, and for others, it may not be the most practical or safest option.
She told me that before I would go into remission I would have a period of hypothyroid which was true and I should take a low dose of levothyroxine which Dr Gordon Skinner helped me to get from my GP. However the second time this happened before this remission my GP refused to help so I had to purchase Thyroid S from Thailand. At the moment I do feel well but I still get palps and slight sweats so I try to avoid stress and coffee. There will be people who disagree with her but she is the only one who has really helped me in the last 12 years.
I am just one person diagnosed with Graves in 2003 and received RAI treatment in 2005. I was diagnosed at age 56 and my initial symptoms were exhaustion, insomnia and dry gritty eyes. Being dyslexic I asked questions, but do not remember being told anything of any substance and given 2 leaflets, one regarding thyroid eye disease and the other, on red paper was about RAI, and told at the very beginning of my treatment with AT drugs that the AT drugs were too dangerous to stay on long term, even if I was well on them, which I was, and that I was to have RAI the following year.
I was Levothyroxine either on 100 or 125 mcg daily and dosed and monitored on a TSH blood test in primary care, and if I complained about continued symptoms an antidepressant was prescribed. I was dosed and monitored to be in range - my TSH always low barely coming into the bottom of the TSH range.
I became very unwell around 8 years later and now understand that was when my thyroid totally failed, my cognitive functions declined and my saliva started to dry up firstly in my ears, nose, eyes and finally my mouth with my dentist suggesting Sjogren's Syndrome. This proved negative though low ferritin was flagged and that was my starting point to find out what had happened to me because after 18 months on a NHS not so merry Merry Go Round I was with no answers and referred to by my doctor as a conundrum.
Whilst she acknowledged the whole of my digestive tract appeared to be dry, burnt, or whatever, I was never acknowledged as having gastric or oral mucosa, and suffering with no saliva and the long term consequences of RAI. There are details on my profile page should you wish more details of my journey in all this nightmare.
I thought maybe the Graves had come back, and purchased Elaine Moore's book, only to find out that Graves never goes away and symptoms similar to Sjogren's can be experienced after ingesting RAI. I queried the time lag with Elaine Moore and she confirmed this is not unheard of and added as a ' by ' the TSH range is not low enough for some Grave patients to stay within it and be well.
I personally do not understand why anyone would want to stimulate a gland that you have purposely just burnt out and disabled with RAI anyway - surely if you've just killed something off - why would you be trying to resurrect it ?
Anyway, I've learnt so much from Elaine Moore's website as she's listening and collating from ordinary people of their own experiences, who have no vested interest or ego's to massage , just honesty of feedback from people's own experience in the medical system they find themselves in when ill.
I understand it's a game of percentages and guess I'm one of the fallout and yes, very many people seem to have RAI without encountering any problems but I do think it is very interesting that Professor Toft the eminent endocrinologist and physician to the Queen in his final years in the NHS wrote that he is in favour of long term AT medication, rather than RAI or a thyroidectomy, for Graves patients, irrespective of age or number of recurrences of hyperactivity.
Thyroid Hormone Replacement - A Counterblast to Guidelines - Professor A Toft :
2017 Royal College of Physicians Edinburgh - it is on this website somewhere -
should you wish to read page 3 and third of the way down on the left hand side above all the 18 references he lists under.
I think the whole article sums up the situation beautifully and yes, I'm now self medicating as my TSH being suppressed disallowed me a trial of T3 on the NHS.
You can't make it up and I think the current situation for thyroid treatment a total disgrace to many thousands, of mostly women, struggling on, doing their level best with very little, if any medical support.
Yeah I will have a look at her site. I have no cancer on the thyroid but have had a dealing with it in my bladder so I am very scared about having anything that could hinder it. I have been told that there is a very minimal risk to getting a cancer from RAI and the likes of CT scan and the small amount you get from the injection they give you with radiation to asses your thyroid is pretty much the same. I am sure it's more the trying to find that happy medium with doses and as you say missing the other T3 could be the problem
Don't be bullied by your Endo to have your thyroid removed until you have researched it properly. Some people like me have years of feeling well and at the moment I am taking no medication. I might have to have it removed in the future if any of my nodules look suspicious but at the moment they haven't changed in 10 years.
I think that one of the reasons is that they feel out of their depth with block and replace. They just don't know enough about thyroid to manage it correctly. Most endos are diabetes specialist who think they can wing it with thyroid. Then find they can't.
Managing thyroid levels with B&R is relatively easy, because normal thyroid action (with the fluctuations of Graves’) is knocked out completely. The problem is, it requires high levels of a drug with potentially really nasty side-effects. Taking this amount of medication for a year or so in the hopes of achieving remission is one thing, taking it for the rest of one’s life quite another.
I was actually given a choice whether or not to have block and replace or just carbimazole. I researched it and decided to take first carbimazole and then PTU. I now think I might have made the wrong decision because my Endo overdosed me on PTU so my TSH was 9 and was virtually bedridden. When he told me that everything was fine now and I told him I felt dreadful he then offered me counselling! so I walked out of his clinic never to return.
They can’t make you have RAI, you need to sign a consent form. If you declined, they would have to continue the anti-thyroids.
Anti-thyroid drugs can have some very nasty symptoms, and the people who stay on them for the long term are normally on much lower doses than you need to block the thyroid completely (as with block and replace).
If you don’t achieve remission you’re essentially stuck with the ‘least worst’ option. Each of those currently available - long term anti-thyroids, RAI and thyroidectomy - has its risks and drawbacks. You need to understand these risks and drawbacks and pick the option that is right for your body and your personal circumstances.
Staying on anti-thyroids if your thyroid levels remain relatively stable and within range with a low(ish) dose is one thing, but if your thyroid levels keep taking off again, it could become difficult to manage. Many of us feel truly awful when we are really hyper, supposing that happens while you were on holiday or in the run-up to a big family event (with the associated stress..)
Have you only ever tried B&R ? If so, why not ask your endo if you can switch to titration, and see if you can find a lower dose of medication that will keep your thyroid levels under control. If they aren’t keen on that, you could ask for a second opinion - perhaps asking here for people relatively near to you who’ve been treated with titration, as clinics often seem to prefer one option or the other, so you might need to try a different hospital.
Yeah good shout, I've never thought of it like that. I think I will have another chat with him and see how this next B&R goes and see what happens. Going hyper is horrible and takes my GP ages to be convinced its going over.
If you choose a second referral, you can google the name of the hospital and endo consultants to see whether they have produced any research into Graves’.
Hey there Silverlion
Well done :
I think if you are ok on the AT drugs that has to be the way forward.
After all we are looking at an auto immune disease that attacks the thyroid - the thyroid isn't the cause but your own immune system.
I think it all comes down to money and lack of knowledge : a plaster on the symptoms expressed rather than looking at the cause, the cause is autoimmune and the medics don't go there, or know how to control this component of this disease.
There is a vaccine in trials , but no idea when or where available in the mainstream :
If you need any support regarding long term anti thyroid medication, the Prof Toft paper from 2017 entitled Thyroid Hormone Replacement - A Counterblast to Guidelines sums it up beautifully : it's on here somewhere, but sorry cut and paste doesn't resonate with me !
Thank you I will have a dig around 😊
I hope you found Prof Toft's article -
I've also found the Elaine Moore Graves Disease Foundation website an excellent authority of everything Graves related, and there is much more there than you might imagine.
Elaine has Graves and went through RAI treatment in the late 1990's. and finding no help with her continued health issues, and being a medical person, she started digging for herself. She then went on to write her first book on Graves Disease to help other people who might be in the same boat, and now several books later, she also runs the most all encompassing website on Graves and has a world wide following.
There is an open forum, much like this amazing forum where you can ask questions of the community and Elaine also takes an active role in talking with people on a one to one basis should you wish.
My understanding of being hyper is that it can be treated with carbimazole (in the UK), methimazole (in the US), PTU, or Block & Replace (carbimazole/methimazole + Levothyroxine).
Have you ever tried just carbimazole/methimazole? If you aren't trying to block the thyroid completely then your dose would need to be lower, and long-term use might be less of a problem.
I also had RAI without any problems & do well on Levothyroxine. Carbimazole is not without serious side effects also.
Do Research on all treatments & surgery & speak to people who have had each treatment.
I repeat can you share your story with us because your profile has nothing on it ...
Lora7again, Dusty2 has been an active member here since 2104. I removed your previous comment because it was innapropriate.
Ok I understand .. I just wanted to know her story because a lot of us do share ours on this site and wanted information to back up what she just said.
Lora7again, There is no obligation for any member to share their story.
Ok I just was interested to hear what it was etc. I will leave them to it.
I am replying here rather than to your PM to me.
I opted for RAI because I thought it was the best for me. I had a severe reaction to Carbimazole causing liver problems. I had previously had many surgeries & did not want anymore surgery. I researched RAI & was given time to decide on RAI or surgery. I decided on RAI because it was best for me & nothing to do with cancer.
I had excellent after care with follow up appointments at the hospital for years & also my GP.
Perhaps you can share the name of your Endocrinologist in private with me and other members because the care I have received has been rubbish. I haven't found a doctor yet that I would trust with any of my treatment and now take advice from sites in the US. If I become ill again I will probably have to self medicate again and buy drugs from abroad. It is nice to hear a positive story when all I hear are negative stuff from people in the US and here. The NHS is brilliant for treating cancer patients etc. but is rubbish when it comes to thyroid disease sufferers. I worked for them for many years as did my husband and I have watched the service get worse over the years unfortunately.
It would be lovely if I could find another doctor like Dr Gordon Skinner who I saw in Birmingham before his death. I haven't found any doctor as good him even though I have looked.
The Endocrinologist I saw was a NHS Scotland Dr who does not have a private practice. I was treated at Monklands Hospital by Dr Sandeep. The only way you could see him was if you lived in Lanarkshire & your your GP Practice was in NHS Lanarkshire area.
Thank you for that information. Anyone can go anywhere in the UK for treatment by the NHS and you do not have to stick to your area. My Endo was actually based in Oxford and had written many papers about thyroid disease and I thought he knew what he was doing .... how wrong I was to think that!
As far as I know you can’t self refer to a NHS Scotland Dr.
Thanks for that I will find out because I thought you could go anywhere even to Ireland if you needed to.
I do understand what you are saying and I might end up in similar situation in the future. I have however spoke to many people here and in the US who have shared their stories with me. Some people don't want to share which is their choice but I think you should share so others can gain from other peoples experiences of thyroid disease because knowledge is power.
Take care x
Ok my mother actually died of breast cancer in the 80s and she wasn't offered tamoxifen because it was a new drug. How I wish she had been given that drug because she would now be here to see her grandchildren and even her great grandchild. She was dead at 46 and I miss her every day .....
I know .. my mother was badly let down by the NHS but I do know treatment is so much better now.
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