I was wondering with the members here who had RAI to treat their Graves, How often do you get blood work after? like every 3 or 6 months? Also what bloods do you recommend? reason I am asking is because I was feeling great for awhile and now I am feeling like crap again! My head has a weird air pocket feeling to it.. feels like my heart is beating weird at times... tired and just feel spaced out... I am in the US also! I am trying to find better care since I had RAI I haven't been the same... I am also on .150mcg of Levo MFG is Amneal
Thanks
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Shaf3938
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In the UK the advised schedule is to complete a blood test four to six weeks after the treatment.
Then every one to three months until stable
Once stable once a year to check your thyroid hormone levels.
If you have symptoms suggestive of hypothyroidism or a return of your hyper symptoms then your doctor should check you.
I think in the states medics calculate a more accurate dose, with an uptake scan prior to treatment. In UK a fixed dose strategy studies show the outcomes are very similar - to know if 150mcg is sufficient dose you need to know the FT4 & FT3.
Did you have a full thyroid function before treatment to compare with post treatment levels. TSH is not accurate measure.
What Your most recent results?
TSH, FT4, FT3, TPO & TG antibodies, TSI and Trab antibodies. Also important to test folate, ferritin B12 & vitamin D. Many say treatment trashes nutrients.
Is it possible for things to change quickly? Like feeling good for a few weeks then the next week to feel so crappy? And can dosages always change and not stay stable?
Yes I do think it possible for this to change quickly. As you know Graves is an autoimmune disease which attacks the thyroid stimulating it causing not only unpredictable fluctuations but dangerously high levels. The thyroid was the victim not the source of the disease. The treatment reduces the thyroid ability of the hormone & therefore removes like danger of reaching high levels again.
Now it produces insufficient levels you need the replacement hormone, medics view hypothyroid safer and easier to treat but the autoimmune aspect is still present likely having some impact on levels & the TSH.
When you begin a dose, at first you have more hormone circulating but the TSH senses and alters what it signals the thyroid to produce. The dose end up replacing not topping up your levels, which is likely why you feel well then worse.
Testing too frequently isn’t beneficial because of this, you have to let things settle and adjust gradually . Testing too far apart is just allowing issues to stay unresolved or entirely missed.
I hope you can find an endo willing to test FT4 & FT3 or find a private company which you can use direct and get the information you need.
RAI is a slow burn and gradually your thyroid will be totally disabled.
Surprising the dose of RAI is not that exacting and it can take months for your gland to be totally burnt out and nonfunctional.
It is imperative tht you are dosed and monitored on your Free T3 and Free T4 results and not a TSH - you feedback loop - your HPT ( hypothalamus/pituitary/ thyroid ) loop is now broken, and your TSH a totally unreliable measure of anything.
We generally feel at our best when our T4 is in the top quadrant of the range as this should in theory convert to a descent level of T3 - at around a 1/4 ratio T3/ T4.
T4 is a storage is a storage hormone and needs to be converted by your body into T3 the active hormone which is said to be around 4 times more powerful than T4 and it's suggested the average person needs to covert and utilise around 50 T3 daily just to function.
The more energy you use, the more T3 you are using , so until you feel fully well I wouldn't suggest you extend yourself too much. as you'll become more exhausted and that " feel good factor " you may have found when exercising - will be elusive - with your brain and heart taking the lions share of your T3 to keep you alive.
Your ability to convert the T4 into T3 can be compromised by low levels of ferritin, folate, B12 and vitamin D and RAI is known to trash vitamins and minerals :
So, in the first instance you need a full blood panel to include a TSH, Free T3, Free T4, antibodies, inflammation and ferritin, folate, B12 and vitamin D.
This is where we all start and just post the results and rages back on here for considered opinion.
Arrange an early as possible morning appointment fast overnight taking in just water and take your T4 after the blood draw. Stop any supplement around 7 days before the blood test so we can see exactly what your body is holding onto.
In the UK you are discharged out from hospital very quickly and in primary care, once settled on a dose of T4, deemed right for you, there is just a yearly follow up thyroid blood test which is generally just a TSH reading and totally inadequate which is why many of us now organise our own blood draw and ask forum members for considered opinion.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
Some people can get by one T4 only :
Some people find T4 seems to not work as well as it once did :
Some people add back in a little T3 with the T4 :
Some people can't tolerate T4 and need to take T3 only:
Some people find they feel better on Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland.
Since you have " lost " your own T3 production it's highly likely you will be better with the introduction of T3 either independently or in a combined fixed ratio of T3and T4 as found in NDT.
Thanks! my Endo always only checks my T4 I can't get him to test my FT4 and FT3 and it's hard finding any doctors who will and jumping from Endo to Endo takes months to get seen! it's frustrating....
This was from back in Nov 2021
TSH 0.66 mIU/L 0.40 - 4.50 mIU/L
Free T4 1.2 ng/dL 0.8 - 1.8 ng/dL
Now I got a biometrics screening at work and now my Cholesterol is rising!
LDL is 142 < 100 mg/dL (calc)
Total Cholesterol is 235 Reference Range: 125-199 mg/dL
Well - yes - I now self medicate as I couldn't get the correct treatment i the UK :
Can you get the tests run privately ?
Just a thought - were you diagnosed Graves - as you could log into the Elaine Moore Graves Disease Foundation website and join Elaine's open forum for all Graves patients world wide.
So, Elaine's website Stateside so you would be more likely to find other people in your zip code / time zone and also able to know who best to consult for the correct treatment of this poorly understood and badly treated auto immune disease.
Thanks! my wife thinks I am crazy! I have had RAI back in 2020 and still don't feel like my normal self! and when I feel fine I tend to overdue it with vigorous exercise and such! I just wish people listened to us more
Yes. I read your previous posts here and recognised the signs :
I had RAI for Graves back in 2005 and became very unwell around 8 years later :
Finding no answers through my doctor I thought maybe " that Graves I had " had come back and I purchased Elaine Moore's first book - which came via Amazon from a thrift shop in the States.
You do need to become your own best advocate with this auto immune disease.
By having RAI all that has happened is that you have been switched from " hyper " which is considered life threatening and needing hospital supervision to " hypo " which is considered easily treated in the community.
The thyroid is the victim in all this and not the cause as you still have this AI disease but now it's not considered life threatening so basically - go away - your sorted :
Start reading up and enable yourself to take back some control .
Many people consider this a good time to reconsider life style and stress and work/life balance and work towards changing what they can to calm down their immune system response.
Be kind to yourself, don't beat yourself up, it's challenging, but with some help from Elaine who has herself gone down the RAI for Graves treatment an found it " sucked " now has her website and mountains of research that she happily shares through her well respected and recognised foundation and several published books.
Thank you for all the information! I still try to stay positive even when I feel like crap! lol but the only way to feel somewhat normal with this disease is to take control of you're own health! I am 39 with a wife and kiddo I love so I am determined not to let this disease get the best of me!
I have been making lifestyle changes... even took a demotion at work for less work stress
Yes but I was saying in your extended family a generation away from you - not necessarily Graves - just a thyroid health condition.
I was attacked by a man I employed as my assistant manager - and 4 months later diagnosed Graves - didn't put it all together until many years later after reading Elaine Moore.
Graves can occur " out of the blue " and also likely after a sudden shock to the system like a car accident or an unexpected death of a loved one .
You could be having issues with your thyroid pills inactive ingredients… I thought I was going to have a heart attack on Synthyroid a while back only to find out that it had Acacia in the pill which is poison.
Nothing like I did when I was on Synthyroid with that acacia poisoning and I pretty much just learnt to except that Im never going to feel like I use to before the thyroidectomy and I just got to be realistic and sadly lower my expectations when it comes to Endo’s and don’t let them tell me my labs are fine so I should feel fine if I don’t.
Yeah I have been through 2 Endo's already! and one is from a really good medical network here in my state UPMC and he only goes by TSH only on dosages.... I am on Levo .150mcg by Amneal
I also go to a top rated university JHU and its would be laughable if it wasn’t so sad …My Endo will test (tsh,FT4,T3 and antibodies) NO FT3 I have to pay out of pocket for this test (walk-in labs) buy my test have it done at local lab …easy peasy.
Hi Shaf, I hope you are feeling better now. Also had Rai postpost graves after many years of ups and downs with graves. It's been almost four years since I've had rai and I feel better being on this side of the battle. I do periodic bloodwork and regulate the levo with my endocrinologist. So far so good. My biggest help has been changing my diet and lifestyle to a much healthier one to support my health. Living mindfully and reducing stress, drinking lots of water, eliminating inflammatory processed foods and incorporating whole foods and natural fruit and vegetable juices, moderate exercises, getting adequate sleep, using essential oils, thinking positive, connecting with support system e.g. family, prioritizing selfcare etc. It's a new way of life and one must fight to be healthy. Wishing you good health and wellness. Cheers!
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