At my last endocrinology appointment, it was strongly suggested I have radioactive iodine therapy. I'm not terribly keen, for reasons that many of you here have pointed out.
I still don't know for sure that I have Graves'. The endo didn't think it mattered if it was Graves' or not, she would still recommend RAI. She said if it wasn't Graves' then it couldn't resolve by itself.
Does it matter?
I asked for TRab (results not yet known) and TSI. They said they don't do TSI. Results from 25th Sep were:
TSH <0.01 (0.27-4.2)
T4 41.3 (12-22)
T3 13.3 (3.9-6.7)
TSH-receptor antibody - pending
WCC 4.4 (4-10)
25-OH Vitamin D 59
Ferritin 210 ug/L (30-148)
Coeliac screen negative
I've been started on PTU 50mg and selenium 200mcg (I have mild eye disease). I'm also on propranolol.
Because I had severe neutropenia & hospitalisation after Carbimazole in a hyper episode last year, we are testing bloods weekly for 2 weeks, then fortnightly (WCC and liver function until 3rd week, then thyroid too). First blood test is 8.45 Monday morning.
My understanding is that usual duration of PTU treatment is 12-18 months. Beneficial effects take some time to manifest. However, treatment may not work or may cause adverse side effects and Radioactive Iodine treatment may then be necessary.
I have an appointment to discuss radioactive iodine therapy with the consultant on Tuesday, and am preparing questions. Any advice?
On which front, I would also like to take the opportunity to say a big thank you! You are all so kind and knowledgeable, and so generous with your time. I appreciate it very much.
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Questions so far:
What are the TRab results?
How do we know that I don't have Hashimoto's? I understand that autoimmune thyroiditis can initially cause a transient rise before declining to under active. How long is transient?
I'd like to use antithyroid drugs for at least 18 months before deciding on a permanent course of action. Because:
- longer ATD treatment results in lower relapse rate
- if my flare is cause by stress (likely, as am shielding) then I can address that
- Graves' waxes and wanes and may resolve itself as it did last time
- risk of thyroid eye disease worsening with RAI
- risk of thyroid storm with RAI
Radioiodine ablation has been found to induce and/or exacerbate TED. I've heard a short course of prednisone helps in preventing the development of TED. But by how much?
Safety: my partner is severely immunocompromised. The leaflet says to keep away for 14 days after RAI treatment. But it also says stay away for 24 days if in close proximity with someone. We live and work together, so which is it?
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I understand that autoimmune thyroiditis can initially cause a transient rise before declining to under active. How long is transient?
Well, he won't be able to answer that question! Nobody can because it varies from person to person.
Have they never tested your Hashi's antibodies: TPO antibodies and Tg antibodies? If I were in your place there would be no more discussions on the subject or RAI until all the antibodies had been tested! The only reason they are so keen for you to get it is because it makes life easier for them. And, that wouldn't be so bad if they knew how to treat the resulting hypothyroidism, but they don't.
Further questions I would ask:
- how do you intend to treat the resulting hypothyroidism?
- would you dose by the TSH only or also test FT4 and FT3?
- would you be open to prescribing T3 if I have problems converting?
It's very important that you get those points out in the open - and, hopefully in writing! - before you decide to destroy your thyroid. What's more, if do turn out to have Hashi's, the body will eventually destroy the thyroid for you, without going through the trauma of RAI! So, it's very, very important to get thos antibodies tested. Don't let them bully you into something you don't want!
5/9/2023 NORMAL but no results or range data and under 'Thyroglobulin autoantibodies' it says NA (GP bloods)
I'm not convinced that TG was tested given the NA in my notes.
I asked a lot of questions, which I think irritated the endo. He didn't understand why I was querying the diagnosis, and says that because I have eye involvement that that indicates Graves, and that 10-20% of people don't have antibodies.
Because I was hospitalised with severe agranulocytosis on Carmobazole, he does not want me on PTU because the risk of a repeat is too high. I'm currently looking at natural methods instead (shall do another post on that front).
I'm not convinced that TG was tested given the NA in my notes.
I'm surprised they tested it at all! Not usualy on the NHS.
Isn't it amazing that they get irritated by questions. When he takes his car to the garage I wonder if he just blindly accepts the 'diagnosis' the mechanic gives him without questions. Especially if it's one that costs a lot of money! With Hashi's it's not a question of money but of your very life! Of course you ask questions, you'd be daft not to.
I'm by no means an expert on Graves' but I've always understood that one always has high antibodies - TRAB or TSI - with Graves'. It's Hashi's that can be positive without high antibodies. And, on the other hand, the eyes can be involved with Hashi's, too, not just Grave's. So, I can't help feeling he's a bit confused about all that, and maybe that's why he didn't like the questions: he can't answer them!
I would say to think very carefully before you agree to have RAI. Also if you have thyroid eye problems then I understand you are better to have a thyroidectomy rather than to have radioactive iodine.
You say -
“I still don't know for sure that I have Graves'. The endo didn't think it mattered if it was Graves' or not, she would still recommend RAI. She said if it wasn't Graves' then it couldn't resolve by itself.”
Could you try to have a second option with someone who could actually tell you what is going on. I wouldn’t be happy having RAI when the doctor doesn’t even seem to know what’s wrong.
I’ve been in remission from Graves since 2012/3 and I was always been be8ng told that should I relapse then it was RAI for me and equally I always said ‘No thanks’. I would ask to stay on PTU for a longer period of time if I could.
Have you spoken with an eye consultant? If not it would probably be a good idea to see someone before committing to anything. Also do you actually have agranulocytosis or do they just think you might develop it because you didn’t get on with carb? Total nightmare for you isn’t it.
Yes, absolutely, I've got an opthalmology appt coming up on 9th Nov.
When I took Carbimazole last year, after the first 30 days of taking it I had no white blood cells, and was hospitalised with severe agranulocytosis. My endo says the risk of a repeat performance is too high (though given how rare it is in the first place, I don't think there's much data about that — I couldn't find any).
Looking into it, it seems that it's often not a gradual thing; you could have a blood test one day and be fine, then the next all your white blood cells could go. So it's not like it could be easily monitored.
It really is a total nightmare! I'm hoping that the lifestyle and diet changes I'm making will help. Fingers crossed.
I can't add anything more to everything I 've already said and am ' that RAI broken record ' and drank this toxic substance back in 2005 as I trusted and believed the doctors knew best.
I think you had a diagnosis of Graves some 19 years ago - and something has likely triggered it to reappear.
You are shielding, and acknowledge yourself as being in a very stressful, anxiety driven situation and we know Graves is a stress and anxiety driven AI disease and as I linked in previously, endocrinologists are dealing with many more immune system malfunctions at this point in time.
If you must resolve this situation with definitive treatment - have a thyroidectomy.
It is cleaner and the gland and all it's contents totally removed - rather than be left to fester in your neck and body and since you already have eye issues the endo should not even being offering you RAI as this will likely exacerbate your eyes - not improve them.
Treatment after RAI in primary care revolves around TSH readings which are of no value :
If you can't resolve your health and well being on T4 monotherapy - you will need to be referred back to an endo to assess your need for any other treatment option and I am afraid hospital financial constraints outweigh patient medical need in very many areas of the country.
My health started to decline around 8 years post RAI and I found no help nor understanding within the NHS system and with the only second line of treatment being anti depressants -
and unable to afford to go privately,
I decided to self medicate and removed myself from the system, buy my own full spectrum thyroid hormone replacement and am much improved.
A fully functioning working thyroid would be supporting you with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg. with T3 said to be around 4 times more powerful than T4 - Levothyroxine.
Further details on my profile page - should you wish - just press the icon alongside my name and go to my Profile page.
I think you have all the necessary research papers - but can send again if you wish.
I don't envy your situation - I knew nothing back in 2005 and ignorance was bliss -
I started researching when very unwell around 10 years post RAI and too late for me -
first through Elaine's first book - Graves Disease - A Practical Guide - and more recently through her website elaine-moore.com
Hey, thanks and sorry for the slow reply. I've been reading a ton.
The endo wanted me to come off the PTU because of the severe agranulocytosis I had with carbimazole. So I am currently not on ATDs. Long-term PTU is not an option.
I've been reading up a lot on natural approaches, and have instigated lifestyle changes. Daily walks, twice daily yoga/qigong and meditation, no alcohol, no sugar, no processed or inflammatory foods, more wholefoods, more fruit and veg. More organic. Reduced iodine. Very limited dairy. Filtered water. I’ve always steered clear of not-natural products, but am being even more careful with what I use. I'll do another post on this front in case anyone has helpful suggestions or experiences.
Thank you, yes, I've been reading what Elaine has to say on that front, and doing my best to implement. No, I don't have agranulocytosis, but the endo was really worried about the risk. He said it wasn't safe to be on PTU when I had had that reaction to Carbimazole. My understanding is that they wouldn't do surgery with an active thyroid issue, but that they will do RAI with FT4 up to 60 or 70.
My last set of thyroid bloods (17th Oct) were:
TSH <0.01 (0.27 - 4.2)
T4 29.8 (12 - 22) — down from 41.3
T3 9.9 (3.9 - 6.7) — down from 13.3
I've got a new set being done on Monday to see where I'm at. Fingers crossed it's still going in the right direction.
Yes, that was my understanding too, but the endo really wasn't happy with me being on it. He wasn't prepared to take responsibility because he felt it so risky. But also wasn't able to provide any data to support that view. He had only seen 2 or 3 patients with agranulocytosis in his entire career.
Yes, the drop is encouraging, and I sincerely hope it is sustained or improved on Monday. I had only been on the PTU for eight days.
Ok - so he says he has only seen 2 or 3 patients with Agranulocytosis the whole of his career so whether he has been an endocrinologist for 5, 10 or 30 years it's still a very small percentage and I believe causing you unnecessary worry.
Stay the course on PTU - do you ever get your core strength vitamins and minerals run as when metabolism runs too fast as in hyperthyroidism or too slow as in hypothyroidism - the bodyy struggles to extract key nutrients through food no matter how well and clean you eat -
and if your ferritin, folate. B12 or vitamin D are not at good strong levels in their ranges this can unnecessarily, compromise your health further.
Yes, it's a small percentage (he said for him it was 2 or 3 out of several thousand patients) but it's the 21.5% mortality that's the worry.
I'm off the PTU now so shall stay off. I saw a study indicating increased agranulocytosis risk of bobbing on and off — can't find it now though.
Talking of vitamins, I've been wondering recently about what a good strong level for each of them is. Do you happen to know, or shall I do a separate post? Here are my recent results:
25-OH Vitamin D 59 (no range given)
Ferritin 210 (30-148)
Folate 10.6 (3.00 - 20.00)
B12 407 (180 - 640)
Thanks again for your time and for sharing your knowledge. Very much appreciated. x
I came off because he said it was too dangerous and not an option for me because of the repeat risk. I had been hoping to stay on longer term as per that paper.
I haven't yet had any positive antibodies, they've either been negative or middling. Last TRab was negative. They don't/won't run TSI.
Thanks for the guidelines. I didn't have a CRP at the same time as the ferritin, but 20 days previously it was 1 (0-5).
Do NOT be bullied into having RAI treatment. I was pushed into having RAI and trusted the Endo was doing this for my benefit. How wrong was I. Having recently requested my hospital records for the time I was so called being treated for an overactive thyroid, I see how many corners were cut. Their blasé and reckless attitude to the destruction of a very important endocrine gland is, quite frankly, unbelievable.. It appears their main aim was not my health but getting me off their list and back to primary care as soon as possible. In fact, the treatment I’ve received from the NHS, both GPs and Endos has been a disgrace and I now pay for my own T3 and thyroid blood tests via a private consultant.
Stay on AT medication as long as possible and get your antibodies checked (for Graves and Hashis) via private testing.
JUST SAY NO. I beat myself up on a daily basis for being so stupid in trusting them as my general health goes down the pan.
Gingernut44 Oh I’m sorry for you the same as for me didn’t know anything about thyroid over 30 years ago, trusted drs and higher up , was told lies , I’m not very trusting of drs now as all you do is go into battle nice talking with you .
Unfortunately, the endo wanted me to come off the PTU because of the severe agranulocytosis I had with carbimazole. So I am currently not on ATDs. Long-term PTU (which I had hoped for) is not an option. As I just said in my message to Pennyanny, I'm looking at lifestyle and food, and hoping that I can make change that way. I've been immersed in reading and research since the appointment...
Hello, I totally agree with greygoose I was told I had to have it and took there word about it as it was over 30 years ago, I didn’t know anything about thyroid at all was told it would bring it back to normal, ( what a lie) , please take your time , and best wishes big hug
I shall try to take all the time I can! I'm exploring alternative approaches at the moment, as they took me off the PTU because of the risk of repeat agranulocytosis.
I think it’s wrong doctors are suggesting irreversible treatments without confirming the cause.
The management of adjusting anti thyroid medication can be poor making many believe permanent treatments are a better option.
I have hyper from a nodule, not autoimmune. This was confirmed by uptake scan.
I opted to remain long term on carbimazole knowing that remission isn’t a prospect. So you could chose to do what I’m doing & say you want to delay definitive treatment. (You don’t need to tell them you intend to indefinitely)
I haven't had an uptake scan yet. They think I have Graves because of the eye involvement. They said that 10-20% of Graves patients don't have antibodies.
Although I wanted to stay on PTU, the endo wanted me to come off because of the severe agranulocytosis I had with carbimazole, and the risk of that happening again (which it can do at the drop of a hat, apparently). So I am currently not on ATDs.
I'm doing lots of research into alternative approaches and making lifestyle changes in the hope that it helps.
I’m also hyper from a nodule and currently take Carbimazole which mostly keeps it under control My Endo is considering having me take RAI which I’m weighing up. As you have opted to stay long term on the Carbimazole, my question is if this is a viable option long term. My understanding is that it could only be taken for a 2-3 years?
Thanks for that but I don’t have Graves Disease. My issue is a hyper functioning nodule pumping out excess thyroid hormone. Carbimazole keeps it somewhat under control but still causes me issues at times and lowers my white cells. Endo is suggesting a low dose of RAI but I am not overly keen unless there is no better alternative. I’m also looking at ablation but haven’t discussed it with her as yet.
I can’t comment on this treatment but from other hospital experience, consultants seem to often treat everyone with their latest favoured method, like a production line and discharge you back to GP, who doesn’t even tell you what details they have been given as they don’t appear in the basic online records that you can access.
I am very wary now especially where things cannot be undone.
I cant comment on what its like to be hyper as I've never experienced it, however two thoughts occurred to me. One, surely its important to know if it is Graves or not. Nuking your thyroid gland with a radioactive substance is pretty invasive and irreversible. A lot of members here have had RAI and regretted it.
And two if you do decide on either RAI or thyroidectomy what assurances can they give you that should Levo monotherapy turn out not be adequate, that they would be open to prescibing NDT and or T3 as alternatives.
My MIL had an RAI several years ago and her " aftercare" has been appalling. She's not on any thyroid replacement and yet looking at her I think its clear she's now hypothyroid and has been for some time. Yet her GP says her bloods are "in range".
It seems likely that Endos push this very final treatment not out of concern for your health but to get you off their books, cut waiting lists and allow you to become your GP's problem. Whereas whilst you're still hyper they have to see you.
I asked about that, and they said that they do prescribe T3 for some patients. I also found a super useful link on here somewhere, I think it was from pennyannie, which let me check what my GP has prescribed, and they are prescribing T3 consistently, which is mildly comforting.
I'm so sorry for your MIL. I've been reading ‘Your Thyroid And How To Keep It Healthy’ by Dr Barry Durrant-Peatfield (also recommended on this superb forum), which is very illuminating. Does she have a copy of that book?
I'm not at all keen to jump to RAI or thyroidectomy, so fingers crossed I can make some changes by other means (I can't use ATDs because of agranulocytosis, as I've described in several other replies here).
If I understand correctly, you were put on carbimazole and developed agranulocytosis.
And now you are being taken off (or refused?) PTU in case you develop agranulocytosis again. Is there any research evidence this is likely? Carbi and PTU are two different drugs and aren't guaranteed to have exactly the same side effects.
The following questions and comments occur to me.
1) Is it true that developing agranulocytosis on Carbi leaves you with exactly the same risk of agranulocytosis on PTU? It seems unlikely to me.
The risk could be lower, higher or possibly the same on PTU as it was on Carbi, but it seems nobody has quantified the risks for you. If the risk of agranulocytosis on Carbi is 5% i.e. 5% of patients on Carbi develop agranulocytosis then what is the risk of agranulocytosis on PTU? If it is 0.1% then you need to know that. You also need to know if the risk is 0.5%, 5%, 10% or 20% etc. Without truthful numbers quantifying the risk how can you possibly make a decision?
2) Frankly I wouldn't be completely trusting of any doctor when it comes to numbers and risks. I wouldn't put it past them to just make them up to get the answer they want from the patient. I would look it up, and talk to people on the Elaine Moore website.
3) Even if you got a promise from a doctor that they would prescribe T3 or NDT if you didn't get on well on Levo alone, I would doubt that they could be held to such a promise. The staff change too often, there is a shortage of doctors, the NHS is on the verge of collapse, money is in too short a supply, and, frankly, endos and GPs are totally awful at dealing with people struggling with hypothyroidism.
Having had high levels of thyroid hormones for quite a long time your TSH may take a long time to rise to hypothyroid levels. In some cases after hyperthyroidism/Graves the TSH doesn't rise at all even after RAI or thyroidectomy. If that happens you may struggle to get adequate Levo prescribed by GPs. It's amazing how low a dose of Levo doctors think is adequate with someone with a TSH of 20. But with a TSH well below range I wouldn't be surprised if every appointment was a battle with a GP who thinks you're going to drop dead because your TSH hadn't risen since RAI, and you will struggle to get raises in dose, and may have to face repeated attempts to lower your dose instead.
4) It's worth pointing out that Thyroid Eye Disease (TED) can occur in hypothyroidism and hyperthyroidism. Anyone who has developed TED before treatment for Graves is more likely to do badly with RAI. RAI just exacerbates the problem.
5) Another factor is that patients are offered RAI even after thyroidectomy. If you had a skilled surgeon doing a thyroidectomy on you you might feel that you don't need the RAI. I have read that some patients refuse it after thyroidectomy.
6) Another thought occurs... Dosing RAI for a hyperthyroid patient is not an exact science. Some patients drink the stuff, then stay hyperthyroid, then have to drink another dose. I've even read of people having to take three doses before their thyroid died enough to stop being overactive.
Thank you very much for such a considered response. Some excellent points there, and I am thinking about all of these things very carefully. Reading your profile, I am sorry you've had such a rough time of it. It seems like hypo is handled very badly here in the UK.
I can't find any studies about repeat agranulocytosis. That's not to say that they're not there, just that I can't find them.
The risk is about 0.7% for PTU, and 0.3% to 0.6% for Carbimazole. Mortality rate is up to 21.5%. Some people, if they have particular chromosomes, can have up to a 30% risk of agranulocytosis ( via study titled "Genetic variants associated with antithyroid drug-induced agranulocytosis: a genome-wide association study in a European population").
It's annoying that this happened to me last year when I had been perfectly fine on Carbimazole for 18 months 20-odd years ago.
Did you by any any chance have Covid vaccinations as there are several research papers now available showing an increased incidenceof of Graves post vaccination -
I’d be doing so e research as well as getting a second opinion. American thyroid experts I trust have valuable free information online, Podcasts, videos, email downloads to do with all thyroid issues as well as related hormones, diet, supplements, etc. They do not believe most endos are not knowledgeable enough to diagnose and treat thyroid gland health. You can find these experts on Facebook, Instagram and YouTube. I’ve verified a few of their protocols by checking PubMed publications. (Published medical papers).
I have been doing so much research it's coming out of my ears!
I found someone who sounds rather like your description, I've been listening to his podcast and pondering things. I'm making a lot of food and lifestyle changes (detailed in other replies here and soon on a fresh post) but haven't yet started on supplements. Bugleweed and L-carnitine look interesting (I have been taken off ATDs because of the high risk of repeat agranulocytosis).
I'm considering seeing a Functional Medicine practitioner — I see you have been doing that. Would you recommend?
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People beware of Endo drs only offering radioactive iodine as your treatment!
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