Background: I have had graves for 17 years. I battled it successfully for 15 years with PTU but about 2 years ago I had RAI as I became hospitalised with neutropaeonia on both carbimazole and PTU. Since RAI I have had low energy and depression.
My question is: What dosage are people on who have had RAI? And do you add T3?
I am on 150mcg thyroxine. My Ft4 is high normal. FT3 very low but within range. Antibodies sky high, same as pre RAI. Doctors won't offer T3 as it is just about in range but I feel like hell.
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cody_lamonica
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First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
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 Thyroid antibodies are raised
Which antibodies are sky high?
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Getting all four vitamins optimal can help improve conversion of FT4 to FT3
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Hello, thanks. Yes I have all blood test results for the past 12 years on hand taken every 3 - 9 months. Mostly through Medichecks in London as it is cheaper than getting FT3 done regularly through endo. Yes I obey the principles of blood test timing and dietary/drug timing around tests. Additionally I always take T4 2 - 3 hours before eating at the same time. Vitamin profile was fine last check, I had low folate at one point and high D3 through over supplementation. Both are now corrected. I went through a period of trying to optimise with tens of supplements but with little positive effect other than initial placebo. Now I only take D and 200mcg selenium. I tried gluten free religiously a few years ago (c. 2015) but it had no noticeable positive effect and I did not like it. I even tried LDN. I have gone through periods of both self treatment and endo supervised. I have read Elaine's work and many other books.
I think I should have started 2 threads. My original point of curiosity is the average dosage taken for those after RAI. Do you mean to say it is 100 - 200mcg?
Recent bloods:
TSH 41 (0.27 - 4.2) - massively over
FT3 3.12 (3.1 - 6.8) - v. low normal
FT4 20.8 (12 - 22) - fine
Thyroglobulin and peroxidase always in the hundreds
Trab not tested since original diagnosis
So, after RAI I have always been in a situation where 150mcg puts my T4 correct, but T3 is suppressed and TSH remains elevated.
Increasing thyroxine dosage did not help - it elevates FT4 without converting enough to FT3. No vitamin deficiencies are indicated and hypersupplementation does not seem to help.
I think I should find an endo who is likely to give T3 rather than buying it online again.
Are you suggesting trying gluten free again will solve apparent my T4 -> T3 conversion issue post RAI?
I had RAI thyroid ablation in 2005 for Graves Disease and became very unwell some 5-6 years ago. I was never told about my level antibodies then, and am not aware I have ever had them tested since being told I had Graves Disease in 2003. I was treated with Carbimazole and was fine, continued my work and if I could go back and do it all again, I'd fight to stay on the ATD.
I was put on monotherapy with Levothyroxine from 2005 - 2018 my dose being 100/125 daily, and now understand I was being dosed on a TSH reading only, and offered anti depressants when I asked for further help with my symptoms.
I was refused a trial of T3 on the NHS early last year as my TSH was suppressed.
I did trial myself of T3 / T4 as advised in Elaine More's book, it worked, I felt better but couldn't maintain the supply of my preferred named brand. I am now self medicating with Natural Desiccated Thyroid and much improved than when on Levothyroxine - T4 only.
I have no idea how much RAI I was given, and experienced the "Sjogrens type symptoms" as described in her book, some 8 years after my RAI treatment. I joined this site and read Elaine's book, and started my own recovery as I found no help or understanding within the NHS system. My doctor refused a copy of Elaine Moore's book, so my sister became my mentor, and with the help of this amazing site, I've managed to come back from having being severely compromised in both my brain, mind, body and soul.
I can't imagine how you are feeling with such high antibodies.
I don't have any suggestions, only to refer back to Elaine, which I'm sure you have done.
Hopefully, there will be someone on here with a better understanding than me, I'm sorry.
All I know is that a combination of T3 + T4 suited me better and that since NDT contains all the same known hormones as those of a human viz, T1, T2, T3, T4 + calcitonin, I've moved to this tried and tested thyroid hormone replacement that was the treatment of choice for over 100 years, (because it worked then and still does, ) prior to the introduction of blood tests, score cards, tick boxes, and Levothyroxine in the 1960's.
Thank you for sharing such detail, I am really glad you have managed to find a good solution.
I have also done the antidepressant bandwagon many times over the years as a result of this to no significant positive effect. I am sure my ailments are thyroid related. They also put me on ADHD meds which obviously eliminated the fatigue but I became addicted. Now back to square one.
In the past I have used Armour thyroid at times againt doctor recommendations - 2 grains per day ordered online. I don't know for sure if it was better or worse at that time, but that was before RAI and I did not have the T3 conversion issue then.
I wish I didn't have to do RAI as I was fine with the ADTs but sadly my white blood count dropped to near 0 on them out of the blue.
I am starting to think that self treating again with NDT/armour is going to be my solution like you. I have to take action and do something.
But I'm not sure I can even face going back to doctors and asking for armour or T3 again as I have always been dismissed.
You said there was a possiblity of getting T3 on the NHS. Well, my TSH is through the roof. Endo would tell me to take more thyroxine and come back in 6 weeks. Repeat. I gave up. I no longer want to accept being miserable and exhausted. Perhaps I should start the endo search again or just go trial NDT myself again. I still have a box full. Need to think about it.
Welcome to our forum and if you copy/paste your above thyroid history into your profile, it gives members, in the future, an idea of your journey to being diagnosed and members can read it before asking you the same questions.
I have my thyroid gland and I couldn't improve on levothyroxine alone. I felt much better when T3 was added to T4. I know the 'organisation' decided to withdraw T3 due to cost but considering that people who are not recovering on levothyroxine which is T4 alone (an inactive hormone which has to convert to T3) or have had RAI or thyroid gland removed I believe that they should be on a product which contains T4 and T3 - either T3 added to T4 or NDT. Quite a number of Researchers have also proven that a T4/T3 combination works better for people.
There used to be prescribed a product called NDT i.e. natural dessicated thyroid hormones which give all of the hormones a healthy gland would have. Unfortunately, the 'professionals' decided to withdraw this essential hormone through misinformation leaving many who were well on it, without recourse to good health. It has been used and prescribed since 1892 until withdrawn a short time ago without notice.
Many on this forum would like the professionals to also have their thyroid gland removed, so they could actually have the side effects the patients have but who are told 'your TSH is in range'. They rarely test Free T4 and Free T3 and concentrate upon the TSH alone. We need a TSH of 1 or lower - not in range as the majority of medical professionals seem to believe. We need an FT3 and FT4 in the upper part of the ranges.
All blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards. This helps to keep the TSH at its highest as it drops throughout the day and prevents an adjustment down being made by the doctors/endos.
Also request B12, Vit D, iron, ferritin and folate to be tested everything has to be optimal.
This is another's story about having her thyroid gland removed. She has enabled the Scottish Parliament to pass a new law and has achieved an enormous amount that if someone isn't recovering on levothyroxine, options can be prescribed.
Thyroiduk and other thyroid forums also attended the Scottish Parliament too.
Well, if you have a box of NDT " looking at you " maybe this is saying something ??
Are they " in date " willing and able, just so not to write them off, without trying.
The other alternatives are T3 + T4, or T3 only, both of which may need a doctors intervention, which in itself may make for more stress and no understanding or help.
I don't think you can look at the TSH to mean anything, especially after RAI.
Your feedback loop is broken, so T3 and T4 are the numbers to look at, and yes your T3 is negligible, not even worth considering working out it's % and your T4 80% through the range, so obviously, conversion isn't happening, and so T4 alone isn't going to do anything.
RAI can severely " trash " your vitamins and minerals, and these need to be at optimal levels for any thyroid hormone replacement to work. Ferritin, folate, B12 and vitamin D all need to be at decent levels, and not " just in range " and considered as " no action " by the guidelines doctors work to. I'm not suggesting that this alone solves the issue, but it just might help restore your core strength to withstand the current onslaught.
I read of many side effects relating to RAI 1-31 treatment - I don't know if it's helped or hindered me, as some days it plays on my mind too much. It's a toxic substance, the long term consequences of which having received very little publication in the mainstream.
I do know however that depression is acknowledged as a known side effect of RAI and that the management of hypothyroidism, after RAI is acknowledged as " challenging " .
Quite what this means in layman's terms I don't really know, what I do know is that I wish I'd never had this ---- and been giving treatment options like most other people I read about on here.
Tell me, how does your current doctor propose to treat you - surely he must realise he's out of his depth and have contacted an endocrinologist for advice on what he can do to help you ?
I'm so sorry you are having such a hard time since RAI. I had a TT 6 months ago, and it's never easy afterwards to find the sweet spot for your medication.
We are all very different - and you will get answers with people on as many dosages as there are people who post here (about 100,000!).
Your dosage will depend on your symptoms together with your bloodwork. Have you had an ultrasound or CT scan of your neck recently? Have you been examined post RAI to monitor your condition, other than receiving replacement hormone?
I am not a doctor, but have read up on this a little bit - and have a hypothesis you may wish to ask an endocrinologist. After RAI, it can take from 6 months to as long as two years for the thyroid function to stop. During that time, your thyroid may still be producing T4. When I look at how high your TSH is, I wonder if this is the case. You are clearly not converting to T3, so I believe that would also help you enormously. After my TT I felt very weepy and sad until I received T3 when it became clear I was not converting, and it felt like someone gave me a happy pill. It was the first time I felt better since my TT. I can't say for sure if it will work for you, but I would think a trial of it would be in order. If you can't get it from an endocrinologist, there are many here on the forum who order it themselves and ask each other for help with dosing.
I hope this has been helpful and wish you all the best. Feel better soon.
When I speak of NDT, I mean armour thyroid in my case. I am not sure of the difference, maybe I have never had NDT. When I said I have a box full, I exaggerated because I checked and I have 140 tablets which are a few months out of date.
My armours are 60mg containing 38mcg T4 / 9 mcg T3
This is my plan
I looked up the equivalency, and most sources claim 1 grain roughly equals 100 mcg
Therefore, I am now taking:
50mcg T4 (thyroxine)
1 grain (60mg armour thyroid) (split 1/2 BID)
This is to replace the 150mcg T4 and the 50mcg T4 is to remain in place of doing 1.5 grains in effort to maintain a closer to human T4:T3 ratio.
I think it would be better to use cytomel/T3 on top of T4 but I don't have any.
I am going to be doing this by my own accord now as I cannot be bothered asserting myself to endos anymore and this is my quality of life at stake.
Here is the part where I may be jumping the gun and time will tell:
This is only just day 2 of this (started yesterday morning taking TWO 60mg armour by initial miscalculation - causing me to have anxiety and palpitations so I probably know the armour is good), and today I feel magnitudes better. I don't have the "Heavy legs" feeling where I don't want to get out of bed today for the first time. I may even leave the house (have not done so for 5 days). I even slept the whole night without waking for the first time in months.
But, I must admit this could be a temporary coincidence and a placebo effect as I am excited to be trying something new. I need to make a better judgement over the coming weeks and also repeat bloods. So for now either its in my head but what I am feeling does tie in with T3's peak blood level timing and half life....
Regarding the question above, I have had 3 endocrinologists in the past 2 years as I have had to move around a lot. All except one agreed to test FT3 but they were all averse to giving me any T3 based preparation. I can't be bothered with them anymore, I am going to try it my way for a bit.
I mean, looking at my numbers it is clear to most likely be a conversion problem that more T4 will never solve, as some of you say.
I really appreciate the support and inspiration. I understand some may disagree with my choice to self medicate but I need to try this. Will get bloods in 2 weeks.
Just saw that you " pinged me " - if you want to reply to a certain post you need to press on the blue reply button after the post. " Liking " doesn't necessarily bring the person back to the original post, to read anything you may have written since.
Well ok that's a plan.
Armour is Natural Desiccated Thyroid - all NDT has a breakdown of thyroid hormones and most sources state the content as 38 T4 and 9 T3 per 1 grain : 1 grain ( tablet ) is said to be equivalent in strength to 75 - 100 T4.
It's a bit of a guessing game, we are all different, and conversion is dependant on so many factors, optimal vitamins and minerals and optimal health in that it is known that depression, chronic pain, etc: etc: will negatively impact on a persons ability to convert T4 into T3.
So you are now trying 50 T4 plus 1 NDT grain split am and pm ? ( BID ?? )
I'm glad you feel something, let's hope this continues, I think 2 weeks might be too soon for a blood test, and with NDT it's more about relief of symptoms and not what a blood test may, or may not say.
There are many on this site self medicating, and if you wish to find your own sources of T3, T4 and or NDT if you place another, new post, asking for a private message to source same, I'm sure you'll get some answers.
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