I got the RAI for graves disease and after around two month I went hypo. My endo started me on 50mcg of Levo and said we would retest in 4 to 6 weeks.
About three weeks after being on the meds I started feeling the hypo symptoms again! (Tired, muscle cramps and twitches) But also I am getting really strange insomnia. I feel like I never really go into deep sleep, and I wake up every few hours.
My sister said I am sleep walking a lot. My family has a history of sleep walking/night terrors, and I have had them for years. But recently it seems to be excessive.
Anyways, I know we are still working on my dosage. But has anyone else experienced this? Did it go away once you were in the normal range? Should I ask my Dr to come in a week early to get retested? Any natural remedies or tips to get me through the next few weeks?
Thanks! I know this has been a super long post! I am just hoping that this goes away, and I can start feeling normal again!
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glennss3
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It would have been better for you to be started on 100 mcg as you now have no thyroid. I would ask the doctor to test now or up your dose now and retest in four weeks. I find I have shallow sleep if under medicated.
You need good levels of all these vitamins in order to process the replacement thyroid hormones
It's extremely common to have low levels and to need to supplement some or all
Low vitamin D and low magnesium often go together. Magnesium is good for helping sleep. Eg calm vitality magnesium powder
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, (and if eventually on T3 don't take in 12 hours prior to test), delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Many patients after RAI are likely to need addition of small dose of T3 as well as Levothyroxine
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3. Note also his comments on current inadequate treatment here in Uk following thyroidectomy or RAI
I wasn't conned into having it either and the constant anti RAI quite frankly gets on my wick ! i agree with dusty2 that your post implies we who choose to have the treatment are stupid.
The negativity about RAI is not very helpful when there are lots of us who have had the treatment. I never know whether people mean it’s because it makes you hypo and that itself comes with difficulties or because the RAI harms you.
Unfortunately Levo causes insomnia and for me it was horrible, going for days without sleep. Only when I managed to get WP thyroid NDT did I start sleeping properly again.
Hi U think my insomnia was the result of taking Levo and to be honest it was horrendous. It felt like my eyes were being forced open and any sleep was shallow at best. It was so bad I even had to take days off work which is unlike me. My GP was understanding and gave me a number of different types of sleeping pills in an array of different quantities but even these wouldn't tough the insomnia. It was as if I had been drinking mug after mug of exceptionally strong espresso even though I avoid stimulants like coffee at all cost!
You fail to accept that many do very very well after RAI, your comments are unfair to those considering the treatment either through necessity or choice. You should not force your opinions on others.
Oh lord yet another person conned into RAI .the medical world should be the ones suffering from this barbarism
Your comments on this thread have very clearly, and understandably, appeared to imply those who have had RAI were conned, hence they were gullible.
This has been rejected in no uncertain terms and these responses have clearly shown this not to be the case.
You go on to attribute the negative experiences not just on RAI but on what might be "damage from Graves, the RAI, the hypothyroid itself and the lack of correct treatment". Surely the important bit for your opinion is just the difference between RAI and other treatments (surgery and long-term anti-thyroid treatment)? The damage from Graves, the post-treatment hypothyroidism and lack of correct treatment are likely similar regardless?
Ablation of the thyroid by radioactive iodine goes back much further than fifty years - to at least 1947.
The whole subject of RAI is vastly more complex than your response allows.
For example, the possibility that RAI might actually reduce recurrences of some thyroid cancers. (Your comments don't seem to take cancer treatment on board at all.)
This is a SUPPORT forum and your response here comes across as very far away from being supportive. Please be more thoughtful about how your responses are worded and how members might feel when they read them.
If you want to suggest some sort of resource centre, I suggest you write a brand new post and explain what it is you are suggesting and why it is needed. (The HealthUnlocked platform does not have any such thing at present. A well-argued case could persuade them that one is necessary.)
In the meantime, we do have links to a considerable volume of good quality information on the Thyroid UK website:
In your first response, you made no reference whatsoever to the reason for RAI - Graves, cancer or something else. Therefore it is natural to assume that the comment applies to all cases.
I very carefully did NOT state that RAI was in routine use, just in use. I do not know how widespread its use at any time. It would probably be reasonably easy to gather statistics for the recent past, but likely almost impossible for deeper history.
Hi I think my insomnia was the result of Levo and to be honest it was horrendous. It felt like my eyes were being forced open and any sleep was shallow at best. My GP tried his best and gave me a variety of different sleeping pills in increasing quantities but nothing touched the insomnia. It was as if I had drunk large quantities of the strongest espresso imaginable even though I never touched coffee or anything stimulating!
I am one who decided to do RAI at the recommendation of my endocrinologist about 3 years ago. It’s been hell pretty much ever since. I haven’t tried NDT so that’s something I’ll look into now.
I agree with you reallyfedup 123. I to was offered rai for my graves and i refused because my endo could not guarantee that rai would not affect other organs in my body. I was not willing to be any sicker then what i was. Hats off to the people that rai has helped. Rai is not the answer for everyone with thyroid and graves. I pray for everyone that is sick on this forum. Have a blessed day!
I don’t think anyone would choose either RAI or thyroidectomy if it could be avoided, but another recent post reminds us just how awful it can be living with an unstable thyroid.
It would be good to see research into numbers happy with their RAI decision after say, ten years, v those who feel worse.
Also, does anyone know if there is any research into treatment of Hashimoto’s patients v those with no thyroids ?
Doctors dont listen to their patients thats alot of the problem. I have found a good doctor in my city. I would never do rai it can stay in your system for along time.
I think it is important to write an update for people who may be experiencing similar problems and are reading this post looking for answers!
Just so everyone knows I got this figured out, my dose was too low. So after increasing it I started sleeping better! Also I now take vitamin D supplements and notice a huge difference in my sleeping patterns! Thanks everyone who gave me advice and helped me during that really hard time in my life!
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INSOMNIA
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