I had RAI treatment for Graves 40 years ago. 10 years ago, I was diagnosed with a parathyroid adenoma and had that removed. (by the way--people who took radio active iodine are advised by the NDC to have their PTH hormone levels tested every 5 years)
Recently I have suffered from insomnia and extreme tiredness. Occasionally I've been waking up in the middle of the night with numb or tingling hands. I tried changing my thyroid dose and other possible remedies. Nothing helped. This week, I discovered my worsening insomnia and tingling/numbness in my hands was being caused by low blood calcium levels. I am now taking 1,000 calcium carbonate 3x a day and 5,000 D. I feel sooooo much better. I can sleep!!! Thought I'd pass this on to help others who are suffering similar symptoms.
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Teras
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I shall keep this article just ' in case ' anything else happens to me :
So far I have received no acknowledgement or help for the debilitating long term consequences of RAI that I believe I have been suffering with.
My not so Merry Go Round of the NHS departments over a period of over 2 1/2 years from ophthalmology, to rheumatology, oral surgery, gastroenterology and latterly at my insistence endocrinology produced nothing other than flagging up a ' low ferritin '.
Feeling utterly devastated by the whole circus with no one picking up my RAI treatment from 10 years earlier I was housebound and referred to as a conundrum by my doctor.
I started to ' Google ' low ferritin, and the one and only illness I'd ever had treated at hospital - Graves Disease and low and behold ended up here - Thank Goodness.
I am now self medicating and am not housebound, much improved and getting my life back. Along with Elaine Moore's book on Graves Disease, a few other books and this amazing website I've put myself back together again, like Humpty Dumpty.
It is disconcerting that information has and still is becoming available concerning the longer term consequences of RAI treatment and I seriously wonder if anybody within the medical profession reads further information publications, keeps up to date, and bothers to question the current guidelines.
I was told nothing back in 2003/5 and in fact believed I had been ' cured ' of Graves. Being dyslexic I simply trusted what I was told by the medical professionals and only became my own doctor some 3/4 years ago.
Hi pennyannie I hope you do not mind me jumping in onto your reply to Teras. The same happened to me, the Levo stopped working 7 years after RAI. Would you mind telling me what you are now taking, you mention (full spectrum thyroid hormone replacement)? Thank you.
If you haven't already found it, my profile page covers my thyroid journey in a little more depth, since registering on this amazing website in 2017.
After about 2+ 1/2 years in the NHS system I was refused a trial of T3.
I did try T3/T4 and was ok on 100 T4 with 6.25 T3 but couldn't maintain a supply chain.
I also trialled NDT and found it ' softer ' on my body so decided to stay with the full spectrum thyroid support which includes all the know same thyroid hormones as that of a human gland viz. T1. T2. T3 .T4 and calcitonin. So this is pig's thyroid dried and ground down into tablets, also referred to as grains, with each tablet containing a set amount of T3 and T4 - most brands stating at T3 of around 9mcg. and a T4 of around 38mcg.
I am so glad NDT has worked for you and you are now living a good life. I did try Naturethroid 2 years ago which did not suit me at the time (I had adrenal problems I believe). I am now wanting to try again, and I am hoping Armour will work. Do you mind me asking which brand you take?
Thank you for your reply pennyannie, and I agree that this is a great site.
Well, I think we are all a work in progress and just offer my limited knowledge so to try and help others, and am indebted to the people on here who helped me a couple of years ago.
Yes, you need to sort out your adrenals and the vitamins and minerals first as no thyroid hormone replacement works effectively if these building blocks have not been built back up and maintained at optimal levels.
This is an excellent book, Your Thyroid and How To Keep It Healthy is written by a doctor who has hypothyroidism. Barry Durrant - Peatfield writes in a relatively easy, funny, sometimes insightful way and has become one of my most goto books.
Yes we are, I wish the medical profession had some insight into the loss of a thyroid and not tell lies that once its gone you will feel so much better!
I notice you were diagnosed with Graves in 2003, I was too.
I have done everything I can to help adrenals and hormones with diet and supplements, made my life as stress free as I can.
I am trying the Henning brand first, then NDT if it doesn't change anything.
I'm worn out from my body shutting down unable to move etc and going to A&E. There just has to be a way of living a life rather than existing.
I have been wondering about RAI too. Your body have iodine receptors all over your body, so they took a dose of the RAI too.
I have suffered with terrible insomnia and daytime exhaustion the. last few years. I've been playing with my thyroid dose, but the fatigue never abated. Last week, I woke with numb, tingling hands. I did a search for that symptom, and found the result of low calcium. So I took calcium. And it worked. I had no idea low calcium caused fatigue, insomnia, and tingling hands. My parathyroid surgery was several years ago, but I still must have hungry bone syndrome. I'm taking 3 maximum strength Tums par day and I feel so much better.
I did 23andme and found out a lot of good info specific to my genetics.
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