Help with reading materials on Graves -> RAI -> Hypo

[jsy_girl]

Hello - I have learned so much from this forum and I would really like to learn more so I was wondering if anyone can recommend some good reading material?

Specifically interested to understand the importance of thyroid antibodies. And whether I should be continuing to look at these going forwards.

I had graves disease hyper thyroidism treated with radioactive iodine. I am now hypo - I'd like to understand do i still have Graves, or because i had an autoimmune thyroid disease, does that automatically mean i have hashimotos?

And then anything around the likelihood that I would need to take T3/lio at some point?

And then aside from optimal vitamin ranges, are there any other things I could be doing from a lifestyle perspective that would help me feel well.

Tia as always! Books / and or research paper links welcome

[Lalatoot]

No you have Graves still. Hashimotos is different and a different set of antibodies.

Hashimotos attacks the thyroid tissue but with Graves autoimmune it attacks other tissue such as around the eyes too.

elaine Moore is a good start

elaine-moore.com

[Sixties123]

Hi there , I'm same as you . Hyperthyroid , RAI , now Hypothyroid . I found just taking levo was useless to me . I was gaining weight at a remarkable rate , losing my hair , very tired, and very low in mood to mention a few . I first of all tried to get NDT (natural desiccated thyroid) which I got by going private and a private script . I was on for a while regularly increasing dose to eliminate symptoms . Until I saw an endocrinologist at Carlisle who told me the medication was disgusting and that I needed to address my mental health issues all because I got a bit emotional in the consultation! I then decided to source this from abroad . But because my gp and endo wouldnt monitor me as they either weren't willing or weren't competent enough . I asked to be referred to another specialist who put me back on levo with added t3 . I felt much better and many of my symptoms have improved . I take 125 levo and 20mcg t3 split into 1/2 - 1 in am and 1 in pm . I also take vit d3 , but b12 and magnesium . I hope you are well . Take care kind regards

[jsy_girl in reply to Sixties123]

Thanks Poppyrocks369 for your reply.

We are indeed very similar - and for my own journey ive just started seeing an endo who thinks i could benefit from a trial of T3. He also reduced my T4 to 125mg which is making my pins and needles go CRAZY - i just have permanent pins and needles it seems now. But hopefully after my next blood test he will get me going on some T3. I live in hope! Great to hear you are feeling better on that medication.

[pennyannie]

Hey there Jsy-girl :

I can't remember if I've sent you my reading list before, apologies if I have :

Ok - for Graves Disease - the Elaine Moore Graves Disease Foundation website is an excellent place to start and all her research papers are referenced .

I purchased her very first book - Graves Disease - A Practical Guide - it was for me, a little technical but worthwhile :

Tired Thyroid : from Hyper to Hypo to Healing - breaking the TSH rule : by Barbara S Lougheed - this lady also now runs a blog or two :

For hypothyroidism and a relatively easy, common sense approach : -

Your Thyroid and How To Keep It Healthy by Barry Durrant-Peatfield :

All 3 authors are with the disease they are writing about.

The last book is written by a doctor who resigned from his profession because of the restrictive medical views he found himself up against within his profession.

Thyroid UK has books on it's website, including, Behind Closed Doors - which is written by a patient and very powerful and easily identified with, by all of us.

Thyroid Uk and this forum also have a multitude of research papers to work through.

[jsy_girl in reply to pennyannie]

Thanks pennyannie this is a great list.

Through a few other posts i have gotten myself the Barry Durant Peatfield book - and am a good way through it. Interesting to read all the stuff about flouride. I am wondering if i should switch to using flouride toothpaste only 1 a day and something else for the other brushing i do. haha. the concerns we have!!

I also have Elaine Moore's book (only got that a week ago). its very technical for me and some bits less relevant i guess now i am already down the road of RAI - so i am skipping over bits but persevering.

Will look at your other recommendations too - i am loving learning more about it. Its all being stored away ready for doing something with it.

Thanks again

[pennyannie in reply to jsy_girl]

Yes, Elaine writes in a technical manner as is her profession - I find the website less daunting and in smaller chunks to comprehend - I purchased a second copy of her book for my doctor who evidently was the thyroid lead at my local surgery and confessed to never having treated a Graves patient, post RAI - but she declined it :

Hey Ho :

Tired Thyroid expands on what I was up against - low suppressed TSH and presumed overmedicated - and seesawing between doses, being dosed on just a TSH blood test and given anti depressants as a consolation prize.

When I did insist on a T3 and T4 blood test, and paid for it through my doctor, she thought my T3 at 4 just 25% through with my T4 at 100 % through acceptable, and said it was " all ok and I was very lucky to have any T3 at all !!!

Needless to say, I am now self medicating with Dr P's recommended thyroid hormone replacement.

Onwards and upwards !!