I am new here, this is my first post. I am a Graves disease patient having had RAI 13 years ago when I was 17. Since then I have really struggled, I was diagnosed with CFS in 2010 following glandular fever, I had to drop out of uni and had a long painful journey to recover. I have never felt fully recovered, I've never been able to hold down a full time job, for example. I had a baby two years ago and for the first 12-18 months after I felt totally amazing, I had so much energy and just felt normal, I was also on a high dose of levothyroxine after pregnancy because I felt Sooooo much better, I had to fight to keep it because my TSH was quite suppressed around .05. in the last 6 months all my fatigue + symptoms have returned, my TSH has crept up to 1.9ish and I feel like I am back to my CFS days.
I guess I am asking, where do I start? Does anyone have a good experience with any drs or Endos in NW (I live in Cheshire) My GP is so reluctant to increase my dose because I'm in the normal range. Having done a bit of reading I would like to try and combination therapy, does anyone in my area have an experience with this/ has found a Dr. To support them?
I am also feeling so sad a frustrated this was done to me at such a young age and I have suffered for so long. I was never told any of this was a risk of the treatment.
Ps. We would like to try for another baby soon but I need to get this right first, I would also appreciate to hear from anyone who has been through pregnancy after RAI.
Thank you!
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Lilacsocks
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My GP is so reluctant to increase my dose because I'm in the normal range.
First place to start, so that we can help you, is for you to post your latest test results with their reference ranges. Just saying "normal" is unfortunately meaningless, it just means somewhere within the range, but we need our levels to be optimal.
If you don't have your results, just ask the receptionist (not the doctor) for a print out. It's our legal right here in the UK.
For a full picture we really need the following tested:
TSH
FT4
FT3
Thyroid antibodies
and because we need optimal nutrient levels for any thyroid hormone to work properly we also need to testL
Vit D
B12
Folate
Ferritin
When we can see your results, we'll be able to help further.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if under medicated
Ask GP to test vitamin levels or test privately
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I will make sure not to take my levothyroxine the morning of the test, I am due one in three weeks as I GP did agree to a tiiiiiiny increase. Unfortunately they only ever test TSH and ft 4 as far as thyroid goes.
Can I please check with the vitamin levels are we still talking about a blood test? I only ask because I saw a nutritionist a few years ago and we did a urine test for vitamin levels
I am with Graves Disease and went through RAI in 2005 - the one main difference between the two of us is age, as I'm now nearly 73.
Though I'm sure you have probably felt like 73 at some points in this journey let's leave that there, for the time being.
Graves is an autoimmune that can attack the thyroid, and the thyroid is the victim in all this and not the cause, the cause is your own immune system mistakenly attacking your body, and it's because the thyroid is such a major gland that the symptoms expressed can be frightening, some life threatening, and some downright odd.
Graves is in your blood, your DNA, and something you will have to live with as currently there is no known cure, though there is some research and development into a vaccine.
The thyroid is a major gland responsible for full body synchronisation, your mental, physical, emotional and psychological wellbeing, your inner central heating system and your metabolism.
Personally I just think if the thyroid has been medically removed or ablated with RAI that both thyroid hormones, T3 and T4 should be on the patient's prescription, for if, and probably when they will be required to maintain optimal health, balance and a level of wellbeing acceptable to the patient.
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 plus 10 T3. I read T3 is about 4 times more powerful than T4 and the body runs on T3, not T4, and uses about 50 T3 a day, just to function.
Your body needs to be able to convert the T4 - Levothyroxine into the T3 - Liothyronine.
This conversion can be compromised is your ferritin, folate, B12 and vitamin D are not optimal and by that I do not mean just in the range, somewhere.
Even with excellent conversion you will see from the above that you have ' lost ' your own T3 production and this little bit of about 10 T3 equates to about 20% of your overall wellbeing, so yes, it would seem logical to replace like with like and prescribe you both T3 and T4 should yours symptoms of hypothyroidism continue.
Currently T3 is not prescribed in primary care, you need to be referred to an endocrinologist, and you may, or may not be considered a suitable candidate for a trial of T3. This will come down to your blood test results and in which CCG you live, as currently T3 is seen as a very expensive thyroid hormone replacement without proven successful s data, though it is only a couple of Euros to buy on the continent and an essential, vital, thyroid hormone.
Graves patients must be dosed and monitored on T3 and T4 blood test results.
Graves patients can have TRab antibodies circulating in their blood which latch onto the TSH receptors thereby driving down the TSH making it a very unreliable measure of anything in a Graves patient.
A TSH blood test is a bit like checking the fuel gauge on the car dashboard - it might look full, but you know you haven't put petrol in for a few days, know your running on empty, and this quick assessment can't be trusted, and you need to get out of the car and revert to physically filling up your car.
Well, our dashboard isn't working either, our feedback loop is broken, as we have taken RAI to burn out and destroy this major gland and disabled the feedback loop, so T3 and T4 need to be tested, and probably dosed independently, with a view to bringing them both into balance at around 75% through the relevant ranges.
Sadly the NHS doesn't know how to control the thyroid antibodies, so after initial diagnosis they don't really bother about them, but there is much you can do for yourself to try and reduce this aspect of the disease.
I read Graves is stress and anxiety driven and for full information on Graves suggest you take a look at the Elaine Moore Graves Disease Foundation website. Elaine has Graves and went through RAI back in the 1990's and finding no help wrote a book, and now as a professional medical researcher has devoted her time to all things autoimmune thyroid Graves Disease,
Another book I found most important is Your Thyroid and How To Keep It Healthy.
Written by a doctor, Barry Durrant - Peatfield who has hypothyroidism, it is written in an easy to understand way, and although we don't know have this amazing little gland we do need to now what it was there for and try and compensate accordingly.
So, first things first, in order to receive a considered opinion about where you are in all this we do need to see a full thyroid blood panel along with the vitamins and minerals and once with this information start a new post with the ranges, and people better able than myself will talk you through everything.
I was where you are a few ago, and now thankfully, in the most part to this amazing site I'm much improved and getting on with my life.
I was refused a trial of T3 by the NHS in 2018 because of my suppressed TSH. and I am now self medicating. I tried adding T3 to me T4 and that worked. I also trialled NDT ( Natural Desiccated Thyroid ) and have settled on this and now into my second year looking after myself.
It does seem that Graves is a poorly understood and badly treated, autoimmune disease but with a little bit of research and reading you too will become your own best advocate
P.S. I believe Medichecks offer a blood test for the TSI/TRab antibodies unique to Graves Disease.
Wow. Thank you for taking the time for this considered response it's really helpful.
I have spoken to my GP and since I am really suffering we are going to bring the blood test result forward to this week, I have also got my hands on the last set so I will post them separately.
One thing that confuses me (although I don't doubt you because I have read it before)...if the average thyroid makes 100 T4 how come so many people seem to take much more than that?
I will definitely do some reading on Elaine Moore, thank you.
I am so glad you have managed to find something that works for you and great you have the confidence to self medicate. I think I would like the support of a dr or Endo because if I do have another pregnancy I would appreciate the thyroid monitoring.
Is their much point in testing the Graves Disease anitbodies? what would this tell me and what could I do about it?
I think one looses a certain amount of the thyroid hormone replacement through digestion, and there again, if suffering with other health issues there might be ' knock on ' issues.
It's an approximation, a ball pack figure to work up to or down from accordingly to one's own unique make up.
I'm currently taking 1 + 1/2 tablets/grains of Natural Desiccated Thyroid and that equates to 57 T4 and 13.50 T3.
I've had RAI thyroid ablation and consider my thyroid burnt out and non productive.
The interesting thing is, T3 is presumed to be about 4 times more powerful than T4.
If you extrapolate that out I'm on around 57 + 54 (13.5 x4 ) so at 111 - this wasn't planned and probably a coincidence, but I thought worth a mention, though sure someone might come along and say it's a red herring.
Yes, of course you want a medical professional to support you, I think we would all prefer that, but sadly, they don't seem to be thick on the ground. I presume you had support with your first pregnancy, can you not go back to who ever maintained your health during this period.
Oh yes, of course that might have been silly of me to say. So it was an OB/Gyn who looked after my thyroid in pregs so I would have to be pregnant first!
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