Radioactive iodine treatment

[frankmac]

I have had hyperthyroidism for over two years now and my Endocrinologist wants me to have Radioactive Iodine because i might have low white blood cells seems to me not a good reason to have RAI which usually results in having Hypothyroidism (which most do) is a bad idea anyone else had the same dilemma ?

[MaisieGray]

Are you sure that he isn't suggesting a radioactive iodine uptake test, which is a type of scan used in the diagnosis of thyroid problems, particularly hyperthyroidism. It is entirely different from radioactive iodine therapy which uses much higher doses to destroy cells, and yes, does result in hypothyroidism.

[frankmac in reply to MaisieGray]

My endo gave me the Information leaflet so it's definitely RAI and the more I read about it the more I dislike the idea Thanks

[frankmac]

Thanks don't want either of these options hoping there was an alternative pill to take

[pennyannie]

Hello Frankmac

Are you on Carbimazole, and how are you getting on with this treatment ?

I was on Cabimazole, felt well, but told as my white blood count was low I must have RAI within about 15months of starting this medication.

Well, firstly, there are other medications to Carbimazole - eg :- PTU :

I read of people staying on anti thyroid medicine for years :

I read of people on block and replace treatment :

I read of people finding remission :

Personally, and not being rude I think there is a level of ageism as to what is offered.

On no account drink RAI - it is the hospitals treatment of choice as it is the cheapest option, a 20 minute out patient appointment and a discharge back into primary care.

It is not in any patients best interest to drink a toxic substance that goes through the whole body.

Surgery would be a " cleaner and more complete " procedure if you must choose any radical option.

At the end of the day, Graves is an autoimmune disease and as such you have it for life.

It's in your blood, your DNA, and something may have just triggered your immune system to attack your thyroid.

There is probably some genetic predisposition, probably a generation away from you.

Graves is stress and anxiety driven, and some people find diet and life style changes need to be considered to help bring down antibodies.

Your thyroid is the victim in all this and not the cause.

The cause is your immune system attacking your thyroid, sending it haywire and giving you the symptoms that sent you to the doctor.

True, if left untreated Graves can be said to be life threatening, but removal of this major gland can come with it's own set of problems.

The medical profession believe that they can manage hypothyroidism better than they can manage hyperthyroidism.

Your body clock has probably been running fast and it's essential that you check out and shore up the essential body building blocks of ferritin, folate, B12 and vitamin D.

These need to be at optimum levels to help your body regain some strength and stability.

Professor Toft an eminent endocrinologist wrote the following extract :-

" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine -131 or surgery in patients with Graves' Disease, irrespective of age or number of recurrences of hyperthyroidism."

December 2017 Journal of the Royal College of Physicians of Edinburgh:

It is on this website somewhere should you wish to print it off.

I think this says it all - looking back I don't believe I even had one recurrence of hyperthyroidism whilst on the anti thyroid medication, but I still had to have RAI ?

[frankmac]

Thanks for replying pennyanne I started of on 20mg of carbimazole after first check up levels went down so I was put on 15mg and have stayed on that strength ever since nearly 2 years the only symptoms I had with hyperthyroidism were shaky legs and some weight loss to have RAI and end up with hypothyroidism the symptoms sound worse to me but I suppose eventually the pills should get rid of these basically if I could stay on carbimazole or try ptus that would suit me I don't like the idea my endo would go straight to RAI without checking the WBC. and also not doing a liver function test !How are you healthwise now?

[humanbean in reply to frankmac]

For pennyannie to know you have replied to her you would need to have used the Reply button in her post. The way you've replied means you have only replied to yourself. It's easily done.

I'll tag pennyannie so she'll look at this post.

[pennyannie]

Well, to be frank Frank, I think it's lazy doctoring and pressure to reduce out patient waiting lists. He's never going to see you again, he doesn't care, you're a simply a name slot on his time sheet, and there are new people waiting to see an endo, within the time constraints they are all meant to be working to.

There are options available, but the endo is not forth coming.

As you say, you aren't even a " high maintenance " patient.

You need to ask the questions as it would seem your endo is taking the easy way out, without even trying to help you find alternative anti thyroid medications, or attempting block and replace treatment.

As you say, he is suggesting stopping treatment because of a presumed low white blood count, so where are the blood tests ?

Maybe a different endo might have a different " spin " on it ?

Suggest you get a copy of Prof Toft's article and highlight the extract I sent you -

see what his reaction is, and ask to see somebody else on the " team ".

Thank you I'm doing ok, am self medicating as have found no help or support from either my doctor or the one and only endo I've seen in these past 12 years since drinking RAI.

[frankmac in reply to pennyannie]

Thanks penny I should really have a talk with my own doctor

[pennyannie]

P.S.

You might like to look up Elaine Moore's website. It is a very comprehensive USA website for all things Graves. This lady has the disease and drank the RAI many years ago.

True the medical protocol will be slightly different but nevertheless it is an excellent site.

[frankmac in reply to pennyannie]

I'll have a look later Good luck

[pennyannie]

P.P.S. There is also another website :- Stop the Thyroid Madness - there is section within there giving 20 reasons not to have RAI :

Obviously peoples views on this website are personal, and I can only talk for myself :

I read there are thousands of people who have had RAI and are perfectly happy with their treatment and getting on with their lives.

They will not be on this website and probably don't even know of its existence.

Please read up, educate yourself both in treatment options now and in Graves Disease.

[frankmac in reply to pennyannie]

Thanks pennyannie i'm getting some great advice online and to be fair to my endo about testing for WBC I got this reply "The problem will not appear until you have an infection and insufficient white blood cells to fight it. It’s not really something they can measure when you are well."I've got more questions for my endo when I see him next like different pills or diets and taking precautions against infection

[pennyannie in reply to frankmac]

Well, I don't know really - I was warned before I even went on Carbimazole that my white blood count was low and to go immediately to A& E should this medication give me a sore throat.

I went to the doctor with exhaustion, dry gritty eyes and insomnia and came out frightened by the potential symptoms I might experience from this medication.

However the medication worked, and I felt relatively well, and continued to work.

There was no explanation of the disease in 2003, and I was monitored by various interns at the local hospital, and given two leaflets, one from the BTF on Graves Disease and another from TED on thyroid eye disease.

I just wish I knew then what I do now, but there you go.

[frankmac in reply to pennyannie]

Yeah the only thing I can do now if I felt unwell is to make a doctors appointment and say it's an emergency My endo did say if I had any concerns(have loads now) is to give his department a ring How did they know you had a low WBC? I mean was it a separate test or the one checking levels !

[pennyannie in reply to frankmac]

I believe this must have been done within my initial blood tests.

I thought I was being tested for anaemia and the doctor phoned me at work, the following day to the blood draw, suggesting I go back to see him the following day.

So, looking back presume he tested for thyroid, presume I was positive for the Graves antibody, and that all other blood analysis followed from that initial blood draw.

I was in a state of shock, but totally compliant, and once on Carbimazole, my insomnia and exhaustion eased, along with the dry gritty eye symptoms.

[frankmac in reply to pennyannie]

Right I see your doctor was more thorough because of your symptoms which makes me wonder why WBC s and liver function aren't checked each time I have the bloods taken for thyroids

[pennyannie in reply to frankmac]

I really don't know.

I had moved to Cornwall some six months earlier and this was the first doctor I had seen down here, I was around 55.

I would think thyroid blood tests were ticked by the doctor and then guess the lab went a bit further knowing I'd be put on Carbimazole . The doctor said my white blood count was very low at 4 - and just told me to be very careful with this medication, and watch out for a sore throat, and if unwell, go immediately to A & E.

The medication worked, and I thought I was sorted, and just got on with my life.

I think, the hospital took over the monitoring my progress - not sure.

The fear instilled in me wasn't justified - I read there are risks, I don't know enough to say one way or another - maybe it is dogma.

With regard to blood tests, it now seems impossible to get a full NHS thyroid panel. With many patients being monitored on only a TSH reading, which is neither appropriate nor accurate once on thyroid replacement , it has forced all of us into paying for private tests, which then, your doctor may or may not act upon.

I just feel disappointed, disillusioned and let down by the system.

Having worked for 40 years, I was bowled out at 58 by my NHS treatment for an autoimmune disease that I still have, but now I also have thyroid eye disease and hypothyroidism, and am now self medicating, buying my own thyroid medication.

[frankmac in reply to pennyannie]

Sorry to hear about the way the NHS has treated you and thanks for sharing your experience and the good advice you have given me

[pennyannie in reply to frankmac]

No problem Frank, glad to be of help, get reading and don't get talked into anything.

[Greekchick]

Dear Frankmac,

A little history about me so you will understand my perspective.

I was diagnosed with hyperthyroidism and multinodular goiter some time ago, but only showed symptoms in the last two years and the diagnosis was changed to Graves. My endo wanted to do RAI and I postponed it and was treated with Tapazole until last October when I became resistant to the drug. I absolutely did not want RAI for a variety of reasons, mostly because it’s a slow kill and it’s really hard to manage the medication afterwards. Also, there is some clinical evidence suggesting that if you eventually need a thyroidectomy, it is harder to manage if you first had RAI. (I will try to find the citation and post it for you).

Because I had waited (and my doctor was cooperative), the goiter finally became large enough that a total thyroidectomy was my only option and I had the operation three weeks ago. All my presurgical biopsies were negative for cancer, but the final pathology report after surgery showed precancerous cells. This doesn’t mean I would have developed cancer - let me be clear -but I would have to have been subjected to biopsy after biopsy to be sure and continuous nuclear testing had the thyroid been left in my body if treated with RAI. Even needle biopsies with guided ultrasound still can have inconclusive results. I had three biopsies on the right side and they were all inconclusive (left side was shown benign).

I cannot say my recovery is without its issues ( you can see my questions posted here and I got wonderful support and advice from the members of this forum) but I am immensely relieved that at least I do not have that huge mass in my neck and as well, the continued necessity for monitoring.

Each day I feel a little better - but it’s not a fast fix. It is interesting to note that some health issues I attributed to other causes lessened or disappeared within a week of my surgery. In my particular case, RAI would not have been a good option for me.

Pennyannie has given me great advice in several responses to my questions and I really appreciate her perspective. She has also recommended some great resources that I have already taken a look at. I suggest you have a read.

I would strongly suggest a second opinion and prior to that, educating yourself with some of the recommended resources from Pennyannie so that you can have a meaningful conversation with the doctors. Unfortunately, our choices are not easy ones.

My doctors here in Canada actually had a meeting to discuss my case and so I had the benefit of 3 different “second” opinions (I am lucky to be at one of the major teaching hospitals in Canada). They all agreed on surgery because of the rapid growth of the thyroid in a 2 month period and the absolute size. Having that unanimity was very comforting to me.

I hope you get relief and find the right answer for you, as well as a knowledgeable, compassionate and understanding doctor. I wish you all the best and send you good thoughts and positive energy on your journey. I also hope my experience may provide you with some insight into your case.

[frankmac in reply to Greekchick]

Thanks for replying Greekchick and telling me your story I also have been getting good advice from pennyannie hope you are well now and life is good

[louhop]

Hi

I had Graves disease about 20 years ago. I refused even the radioactive iodine uptake scan, which meant I was passed from the registrar to the consultant. He acknowledged that my case was a clear cut one and was obviously Graves. As my WBC, especially my neutrophils, was low, I was passed on to the haematology department who eventually diagnosed cyclical neutropenia, which just means my WBC/neutrophil count varies and is more often than not below range. I was considered too high risk for carbimazole, both because of my age and my blood so was offered RAI which I refused. After discussion with the consultant we agreed that he would prescribe the drug but I would have regular blood tests - started weekly but then went to monthly and then two monthly. Over the two years I was on carbimazole my neutrophils did fall below range in several tests, but I always asked for a quick follow-on blood test for confirmation and by the time of that took place I had come back into range - albeit on the low side. I also had to change consultant when I moved house who told me to my face he was determined to get me off the drugs, i.e I would have to have RAI or surgery, and even wrote to my GP telling them to take me off it. However I managed to remain on them and get back to my original consultant and have the full two years of drugs. At the end of that time the consultant acknowledged that my decision had been the best one! To end the story, I started with Hashimoto's a couple of years ago and am still trying to optimise my treatment, currently considering self-medication as just levo is not perfect. I am so pleased that I had 15 years without a problem when in all likelihood if I had taken the RAI or surgery option I would have been struggling with levo during all that time.

[frankmac in reply to louhop]

Thanks louhop for your reply I would like if doctors did more monitoring first before going straight to RAI I only know of one person who has had it and that was because the person had trouble swallowing

[Hidden]

Hi Frank. Expect you have asked for your test results back from recent tests so you can keep them in a file. If you look up the drug you take on drugs.com you can look up the side effects. If you have a leaflet with your prescription you may find blood dyscrasias are indicated. You can cross reference the drug on the Yellow Card website. This is a government website which gives a graph of the side effects of the drug you are and the levels of seriousness. You do not have to put any personal details on the website to find the info you need. Just press the drug profile analysis tab, choosing the drug from the A-Z list.

If you have not had an ultrasound test to see if there are any enlarged nodules, then may be you should have this test as it is non invasive. It will indicate the size of your thyroid and the growths. If you have a node biopsy the enlarged nodes will be removed by fine needle biopsy in most cases. Think you should ask for an alternative test before having the radiotherapy treatment. Other blood tests on your vitamin and ferritin levels should be done. If you have iron deficiency from low blood count this might indicate treatment. Vitamin D and B12 deficiency might lead to low white blood cell count. Hope you find out more if you are undecided about the treatment offered. Some drugs may alter vitamin levels.

[frankmac in reply to Hidden]

Thanks hawii60 I should have asked the endo about the blood results I will from now on, all he would say is they are coming down but I never get to see them I don't really have any probelms with the thyroid like swallowing or nodules or being enlarged that's the main reason for not having RAI at this stage i 'll check out side effects of carbimazole Thanks again