Hi, I had RAI treatment after two and a half years on carb. because my consultant said if I continue carb. It would lead to liver failure. RAI is ok. You have to watch your weight increase. It's not a cure all. My symptoms apart from tachycardia still exist. Some are known to worsen after RAi such as Graves eye problems and acropachy.
But doctors main aim is that you don't succumb to heart failure or liver failure. Sorry.
alexist
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Sounds like RAI was right for you and you have managed to stop your high levels.
However if you still have symptoms your levels might now be too low or you might not have adequate replace hormone. If you share some results we can help more.
Difficulties managing hypo after treatment does seem to be common after RAI. Often as once hyper the TSH is unreliable (& GPs treat by measuring TSH) and conversion can be compromised after treatment.
I also wondered if you were replying to a post as you are sharing your experience rather than asking a question.
Also you don’t need to say sorry if your opinion or experience differs to others.
I’ve delayed having the treatment and it was recommended for me early on, this is for lots a reasons.
I don’t think the treatment is wrong for everyone, there a few members who are hypothyroid having had the procedure and feel it was a positive treatment and logically most that have had positive outcomes are not seeking help on a forum.
I do worry about the many reports of people being rushed into this treatment without full guidance and options being provided - but that’s another discussion. Such as suggesting Carbimazole causes cumulative damage. It doesn’t - I think doctors imply that to encourage definitive treatment.
Absolutely—we see here all too often that people are promised that RAI will fix things beautifully. And maybe we never hear here from the people who find that to be true. But we do hear from a number of people who’ve developed severe hypothyroidism afterwards who then struggle to find a dosage of synthetic thyroid hormones that makes them feel well again.
My own theory is that doctors want patients off carbimazole and off their books. Once they have wiped out your thyroid gland you are then at the mercy of your GP who may - or most likely may not - have the knowledge and expertise to keep you well while taking levothyroxine. As far as I am aware even though you no longer have been zapped with the radioactive pill you still have Graves - you just don’t have a working thyroid for it to attack and as you are unfortunately finding out you still have problems.
Graves is considered life threatening if not treated :
There is no cure for Graves Disease - it is an auto immune disease and as such for life :
RAI is the cheapest option for the hospital to perform :
Once discharged from hospital - the treatment is limited by the fact doctors do not seem to understand or be able to run the appropriate blood tests nor prescribe any options of thyroid hormone replacement medications to restore health and well being.
As for the long term consequences of RAI - I wasted over 2 years going around various o/p departments hoping and trying to get help for debilitating symptoms and not one department would either confirm or deny my then health issues.
Housebound I then started reading up for myself and found the research which confirmed my symptoms.
I deeply regret having had RAI back in 2005 - I was not told of there being other treatment options, nor the potential side effects, both short and long term - and doubt anyone would agree to this toxic substance if told the truth and no medic would take this treatment themselves.
I now self medicate with full spectrum thyroid hormone replacement and run my own blood tests and monitor myself - most recent research is suggesting that longer term AT medication is a viable option, though of course this will cost more per patient.
ncbi.nlm.nih.gov/pubmed/306...
pubmed.ncbi.nlm.nih.gov/338...
This is my first time replying here. I want to thank you, pennyannie, for your post. It must have just struck a note as I also regret my RAI treatment, that I was hounded into it and not given any other options. My situation feels way too long and drawn out to put in writing, but I am struggling and will try to keep it short.
RAI over 20 years ago. Mostly treated with NatureThroid and Armor until I couldn’t find a Dr. who was willing to prescribe anything other than Levothyroxine. My Functional Med Chiropractor suggested that my thyroid was not dead and wanted me to go off RX to see. I had such a bad experience after RAI and not being advised what to expect, I was unwilling. I did end up taking over the counter ground pig thyroid (called GTA-Forte in US), and have been using that, without any RX, checking labs with a Naturopath for several years (also working on hormones), doing fairly well.
In December my TSH was 2.83 (0.40-4.5), and the other levels were pretty good.
In January, we put our home on the market and it sold in 2 days, which was great but lots of stress.
In early February I had an issue with my back and the NP took some labs. My TSH came back 50.530. I thought there must be a mistake.
My Naturopath ordered a full thyroid panel and all numbers were bad, and TSH went to 66.07. Ug. I am sure the stress just got to me. I decided to go on Levothyroxine since we were moving out of state and insurance was changing, etc. NP started me on 50 mcg for a month, then doubled it the second month. I’m two weeks into 100 mcg and I feel pretty crappy - joint pain, now depressed.
I have an appointment with a GP in our new area but I’m not at all hopeful she will be helpful. I am trying to get labs to take with me (not helping my attitude that she did not ask for that).
I guess I would like to know, pennyannie, where do you find ‘full spectrum thyroid replacement’ ? I am in the US so may not be available. Thank you again for your post.
Susan (sew_1sohelpful…I blame my poor thyroid for the username I chose😂).
Hey there :
I have had to learn of my situation back to front and if you haven't heard of the Elaine Moore Graves Disease foundation website think you need to dip in there for sure.
Elaine went through RAI for Graves at the end of the last century and finding no help with her continued ill health stated researching this poorly understood and badly treated auto immune disease herself.
Elaine's website is based Stateside and there is an open forum much like this amazing forum where you can freely and safely ask questions of fellow Graves sufferers and Elaine steps in when necessary.
I suggest you use her open forum to find a recommended doctor in your new zip code area and hopefully that will be also link you in with support from fellow forum members in your area.
Yes - Graves seems to thrive on stress and anxiety and hopefully once settled in your new home you will start to rebuild your health and well being.
As far as I am aware, full spectrum thyroid hormone replacement is more easily available, with or without a prescription in the USA.
Yes, I'm talking about natural desiccated thyroid - NDT - desiccated thyroid - DT - which is pig thyroid dried and ground down into a powder and reformulated into tablets referred to as grains, and contains all the same hormones as that of the human gland.
We are not allowed to openly discuss on this forum where we source thyroid hormone medication so I shall PM you that bit of your question.
Thank you for your reply! I have been on the Elaine Moore site, unfortunately my brain is not working up to par and the info seemed very technical. I shall keep at it. Thank you also for suggesting I check there for a Dr. in my area, I had not even thought of that.
I totally get that brain fog -
It only took me around 2 years to understand what I was reading about on this forum and Elaine's - don't worry !!!
Just post a question on Elaine's open forum explaining you have just reallocated and need a knowledgeable endo, doctor in your zip code area and looking for some support.
Our thyroid journeys are are a bit like a jigsaw puzzle but keep reading up, and it does take shape, and you'll find the puzzle pieces fit and even if with that brain fog, stuff does sink in, and as you start to feel better the corner pieces take shape and everything starts to piece itself together.
Another author from your side of the pond : Barbara S Lougheed - another RAI victim think the title is Tired Thyroid - Breaking the TSH rule - from Hyper to Hypo to Healing - and think Barbara blogs as ThyroidMum ??
In my defence, should I need one, I'm dyslexic which was a lot worse when unwell :
Gluten Free after RAI
Positive rai experience?
What is your dosage after RAI?
Hyperthyroid relapse - considering RAI
