I had radioactive iodine theraphy 2 weeks ago. I have not had any symptoms of hyperthyroidism except slight itching and 5 days of insomnia.

Should I take my carbimazole to see if it helps me get some sleep?

[Hennerton]

Surely carbimazole will reduce thyroid output and I assume radioactive iodine was because you are overactive? If so, I think you will slowly become underactive but this is really a question for your endo. I had TT and immediately started on thyroxine but I am not sure about RI.

[deb25426]

I had RAI, I didn't have any symptoms for a few weeks and then slowly the hypothyroid symptoms started bit by bit. Carbimazole... I was allergic to it. but I was still on propanarol (I think that's how u spell it) I can't think that carbimazole will make any difference. But check with your Endo. X

[Hidden]

Thank you for all your responses. Deb25426 did your hospital send you an appointment for blood work? I have no idea about follow up now I have had the treatment.

[stevehat]

I've had TT in Nov 2013 and RAI end of Jan 2014, blood tests 6 weeks after RAI .

I had papillary cancer & 24 Lymph nodes removed.

TT not as bad as I had read beforehand, although a huge scar.

The thing that bothered me more was not being able to sleep due to the noise & lights at night in hospital.

I am having itching & insomnia, stomach issues, headaches right now.

I'm gonna write the year off and just concentrate on getting better.

[real_mission in reply to stevehat]

I get headaches when I go low. If I miss a few doses, it takes 1-2 day to get rid of the dull,dull aches on the top of my head. Once back up to normal levels, Im fine.

[Hidden in reply to stevehat]

I am sorry you're having such a bad time. Are you currently hypo or hyper? Why does your Dr think you are itchy and can't sleeps?

[lizmag]

I had RAI to treat Graves disease three weeks ago. The endo has sent a letter to the GP to say that I need to have blood tests - f t3, ft4 and TSH - one month, three months, six months and one year after the RAI. I was on PTU which I stopped taking 12 days before the RAI and I haven't started taking it again. However, I am showing some signs of going a bit hyper again - very hot from time to time and a faster heartbeat. Based on my experience, you should have a blood test in about two weeks but I live in France and maybe there are different protocols over here. The endo has given very explicit directions to the GP and sent me a copy of the letters and I also have copies of all my blood results.

lizmag

[Hidden in reply to lizmag]

Thanks.

[Hidden]

Hey

No! Don't take carbimazole!! You need to call your GP and go in for blood tests ASAP. How overactive were you, what was the treatment for, Graves? or Cancer? Cancer is a bigger dose of RAI then for Graves. 95% of patients go HYPO after RAI but the thyroid takes a while to die and release all its stored hormones so you might be having a 'thyroid dump' - I believe it can be quite unpleasant for several weeks. I had Graves, Hashis, Hashitoxicosis, TED and cancer and I had a TT but refused the RAI. Life without a thyroid is a daily challenge and I'd encourage you to start learning about your illness so you can start being your own health advocate. In my opinion, if you are still overactive after one round of RAI, don't have another round. Find another way....but chances are you won't, and you'll be permanently HYPO. Again in my opinion (and hard won experience) being thyroidless is not quite the same as being 'just' hypO.

If you have autoimmune thyroid disease then RAI will not have cured that, you still have AI disease, just no longer a working thyroid. There are things you can do to calm your immune system (and in my opinion, others will differ, to clear out the toxicity of the RAI that has now been around your whole body). Start reading up about that. Diet is important, going gluten free at the very least, and if you can bear it, the Paleo diet, (and if you are feeling really brave, the autoimmune paleo diet, very dull).

You also need to get blood tests for (you can ring and ask for copies of everything they've done so far too):

Electrolytes - potassium and sodium

Full iron panel - to inc ferritin, serum iron, TIBC, Transferrin and saturation %

Vitamin D

Vitamin B12

Ideally folate, copper and zinc

A good supplement regime would look at bit like this:

A good vitamin B complex - say Thorne, Solaray

A good mineral complex - I like bluebonnet chelated multi minerals to provide 99mg potassium, 100mcg selenium and synergistic amounts of copper and zinc as well as other trace minerals

Extra Vitamin B5

Lots of vitamin C to bowel tolerance - not the fizzy rubbish, a good one

Lots of magnesium - ditto - either citrate or chloride (you can also get mag oil spray by Better You and take epsom salt baths)

Some good unprocessed grey sea salt

Some good fats like coconut oil or grass fed organic butter - if you look at the hormone cascade, good cholesterol is right at the top, your body needs good fat to make its hormones

A good fish oil - a posh one like Green Pasture or Nordic Naturals

CoQ10 - 100mg good, 200 better

Iron if you need it (which I'd bet the farm you do) - I like Bluebonnet iron 27mg, up to 8 a day depending on your iron reuslts

Lots of good quality protein and veggies, low carb and low sugar, no processed junk, low caffeine, low alcohol

A good probiotic like Symprove or Biokult

If you have the stomach for it, some fermented foods like unpasteurised sauerkraut or shredded veggies.

You might also need digestive enzymes and betaine HCL (stomach acid)

I apologise if I sound a bit evangelical, but I had NO IDEA what I was letting myself in for with life without a thyroid. The NHS in my opinion and again in my bitter experience, don't really get it, and frankly, don't really care. I spent several years in hell on carbimazole and then on levothyroxine + T3. I had every deficiency going (graves speeds up your metabolism and your gut so you use up vits and minerals quicker, and as your bowel is moving quicker you don't get enough nutrients from food), I kept crashing into anaemia, I felt like death warmed up and all I got told is 'your thyroid levels are fine, it must be something else'. Total tosh of course! Autoimmune thyroid disease messes up the gut too so that can take a while to sort out. You need to deal with issues like candida (thrush) if you have them too.

You need a doctor who will listen to your SYMPTOMS and not just your blood results, and you definitely want a doctor who will dose you according to your FT3 and FT4 and not your TSH (especially if you've had Graves, the TSH can remain suppressed for several years post surgery or RAI and those of us who have been overactive are habituated to high levels of thyroid hormones - your 'sweet spot' will be individual to you, and you know you are then when you have a RESOLUTION OF HYPOTHYROID SYMPTOMS).

I hope I haven't upset you, but forewarned is forearmed. Good luck with everything. A good place to start would be here: stopthethyroidmadness.com/d...

Rebecca

x

[Hidden in reply to Hidden]

Rebecca, thankyou for giving me such a detailed and helpful response. I feel like I was given the RAI and thrown out of the hospital with no information other than you will have bllod work regularly in the coming months.....at the hospital with a fo.low up consultant appointment or with GP? I had no idea. I wish I had researched my disease more before the treatment. I have Graves.

[Hidden in reply to Hidden]

Hi there you are not alone, don't beat yourself up.

You should get a letter from the hospital I think. My hospital has a 'thyroid link nurse' that you can email between appointments, might be worth finding out if you have one at yours. Meanwhile I'd make an appointment with your GP just to be on the safe side, did they not give you a discharge notice to take home with you? It might have been in your drug bag - you could take that to the GP, or he might have a note from them at the practice.

In any case, don't overwhelm yourself but do start trying to get your head around it all - you'd be shocked (or maybe you wouldn't) just how ignorant doctors are about the thyroid in many cases.

Regarding graves, that is diagnosed by the presence of TRAB (TSH Receptor antibodies, also called TSI) - these block the receptors, hence the suppressed TSH. The TSH can remain suppressed even after the thyroid has stopped functioning because of antibodies, so it's not a useful measure when titrating thyroid hormones for a Graves patient, your doctor needs to check your FT3 and FT4.

If you buy one book buy Stop the Thyroid Madness by Janie Bowthorpe, you can get it on Amazon.....

Good luck

Rebecca

x

[real_mission in reply to Hidden]

Hi Rebecca,

You mention .....'but refused the RAI'

Can you expand on this point? Ive had it drilled into me about 'the importance of RAI' every time I asked about the side effects.

[Hidden in reply to real_mission]

Hi there, my best friend is a PhD cancer researcher and she and I both looked at the research and there is no evidence that RAI (following TT for cancer, and then kept TSH suppressed for life) would add anything to my life chances. My odds of living until I'm old and wrinkly are exactly the same as a woman who has never had cancer, without RAI. My endo said it's just standard practice to offer it in cancer cases and in america, my kind of cancer - papilliary, follicular variant stage 1, 2cm, not in the margins, not in the lymph - would not be treated with RAI.

Personally, unless my life depended on it I would not put that stuff in my body. The main iodine sites in a woman's body are the breast, the ovaries and the gut not just thyroid tissue. I didn't fancy irradiating them! I am a member of three thyroid forums and whilst they might not be the majority I've now 'met' far too many RAI casualties who have never recovered from it that I really wouldn't touch it with a bargepole.

When dosing it for Graves they usually get it wrong and kill the thyroid. The cancer dose is many times higher than that.

Also I had thyroid eye disease so there was a risk to my eyes too - it can aggravate TED.

Finally I'd been so sick, I was misdiagnosed for over ten years with Graves, Hashis, and Hashitoxicosis (honestly the cancer really was the LEAST of my worries!) and then I'd been badly handled on carbimazole by two incompetent endos for two years, that by the time I fell into the arms of my decent doctor I'd had enough. I just wasn't going to put myself through any more. To be totally truthful I'd rather take my chances with a recurrence of ThyCa than irradiate every cell in my body!

Hope that answers your question,

Rebecca

x

[real_mission in reply to Hidden]

Brilliant! Thanks for the erudite reply as always

I had read up on the effects of RAI and it worried me greatly. I went through with it all the same, but wish I'd known this at the time. Mine was exactly the same as yours, papillary, 1.2cm no Lymph ingress.

Cobblers! Why couldnt I have known you two years ago Ah, well whats done is done.

[BillieSt]

I had RAI last November. Both my endocrinologist and Christie's where I had the RAI drilled into me that I had to restart the carbimazole one week after the treatment and continue with it until I'd had my 4 week follow up blood test (you are told to stop taking it a week before the treatment) because it takes some time for the RAI to work and in the meantime you are still hyperthyroid. Leave a message with your endo's secretary or ask your GP for advice.