I would be really grateful for some help, please. I have started on 50mg of eutirox since end July, after RAI treatment at end March. These are my latest test results, taken before food at 9.30 am
Calcium, serum 9.2
Phosphate, serum 3.3
TSH 22.8
T4 free 0.89
T3 free 1.38
RT3 0.24
Anti thyroglobulin 153.40
Anti micro Simao (TPO) 117
Anti-TSH receptor (TSI) 40
I would like some advice about what treatment, and which further tests you think I should request from my doctor. If you have time to read it and want some further info, I’ve written more below. Sorry it’s so long winded, and more than you need to know! Thanks in advance for any replies, and anyone taking the time to read this.
I am from the UK , currently living in Spain and have been seeing an endocrinologist here since end 2022. I have Graves’ disease and was getting some treatment in the Uk prior to moving ( more info in my bio). I am 60 years old and became post menopausal in 2022. I had RAI treatment in March 2023 and again end March 2024 because I remained hyperthyroid during that year. I am lucky enough that the endocrinologist speaks a little English, as my Spanish is poor. However, the communication between us isn't great. Because I live some distance from him, he’s told me to email and send him my test results rather than attend appointments, which are very difficult to get with him anyway. On July 17th he prescribed 50mg of Eutirox ( levothyroxin ). My terrible debilitating brain fog, constant fatigue, apathy and depression has lifted since the RAI so that was very positive, but I got worsened digestive issues and chronic constipation, as well as other symptoms of dry eyes, skin, mouth and muscular aches and pains which I told him about when I emailed my results. He issued another blood-test form which is when I asked if he could test me for rT3 as well. He didn’t reply to this, nor my next email requesting other tests. The lovely lady at the test centre added an rT3 test to the request form, so luckily I do have that. Before sending him these results I’d like your input so I can then email him just once with results, and any treatment and test requests you recommend.
When I asked the endocrinologist previously ( before RAI)about supplements and changes I could make to my diet to help, he said there was no point as he could see from my high antibodies that the condition was hereditary. Now I’ve got my thinking brain back I’ve been able to research the condition more which is when I found this site/forum. He has never asked about my symptoms, only ever felt my neck, never tested my pulse or listened to my heart and I suspect he only refers to blood-tests, so far as his treatment goes. I don’t know if he would consider T3 treatment either in combination with T4 or on its own, or NDTs.
I started taking these supplements about eight weeks after the RAI:
magnesium citrate, B12 and B complex at 9 am,
a quality probiotic and berberine half an hour before lunch,
zinc, vit c, d2 and k3 with lunch
probiotic and berberine half an hour before dinner
turmeric and black pepper and selenium with dinner
Eutirox at night, before bed
I started 16:8 intermittent fasting at the same time as the supplements. This helped with the desire to eat half hourly and with post lunch fatigue crashes ( literally falling asleep like being switched off for three hours solid) but in the last few days the crashes have come back. I am following a diet free from gluten, dairy, processed sugars, caffeine, legumes ( sometimes chickpeas) and alcohol. I eat fish every day, eggs, shellfish, and organic lamb once a week. The magnesium citrate has sorted out the constipation, but I still get bloating after meals. I might add an enzyme to take at mealtimes to to help this. My weight has stayed constant so far. I need to add a calcium supplement, and will start eating liver once a week for iron, but may need to add a supplement. But would like testing first.
I still have the cracked thick skin on the palms of my hands and soles of my feet that I had before the RAI treatment. Since becoming hyperthyroid, I now get cramps in my calves, weakness in my glutes, have tingling hands and feet, brittle nails and hair, constant pain in my spine radiating out across and under my shoulder blades and across my shoulders, pain in my left hip joint and shoulder joints, “sticky-feeling” sinovial fluid in my shoulder joints. To add insult to injury I have developed acne! My rib cage on the lower left now aches and I feel like I’m out of alignment too.
My sister has Grave’s disease too, but has not had RAI treatment and has managed hers since 2010 through diet and with a good doctor. She now has osteopenia though.
As well as testing for ferritin, minerals and vitamins (whatever you suggest really) , I’m wondering if I should ask the doctor for testing for estrogen, testosterone and bone health. What do you think?
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You’d had 2 RAI treatments & only on a standard starter dose of 50mcg.
Your TSH is 22. It’s should be nearer 1. You need a dose increase asap. Increase usually 25mcg daily & retest in 6 weeks.
The FT4 Should be in top 3rd of range and FT3 in top half. That is where most feel optimal.
Can you add the lab ranges for the results. Lab ranges vary between labs so always needed for every test.
If you had a prolonged time of hyperthyroid levels you likely need a dexa scan to check bone density. Only supplement calcium if tested first. Usually dietary calcium is sufficient. K2 directs to bones / teeth.
Focus on thyroid levels & optimising key nutrients for now, folate, ferritin, B12 & vitamin D.
Gluten issues very common with thyroid autoimmune, your thyroid antibodies are very high. Have you had a celiac screen test? You need to be eating a diet including gluten when tested.
Calcium levels look in range. Only if abnormal do drs look to test para thyroid hormone levels. It’s something tested after thyroid surgery as they can be damaged during the process but it’s not something doctors routinely monitor with RAI. Although I have read papers suggesting it should be tested annually after undergoing RAI.
Your FT4 & FT3 are under range. Gradual Increases in Replacement levo will raise them. You may find many of your symptoms improve / resolve once these are at optimal levels. It will take time as increases should be done in stages and symptoms will take time to “catch up”.
The gluten allergy screen - anti gluten antibody test - Tissue Transglutaminase (TTG) IgA test. As you are currently on a gluten diet it’s a good time to test.
A gluten Intolerance won’t be detected as test confirm allergy. So even if negative for allergy a large proportion of Graves patients will benefit from trialling strictly gluten free diet.
Hello, so I should ask for the same lab tests as previous, plus ferritin, folate, B12 ( I’ll stop taking this a week before the test), and Vit D? Should I ask for magnesium, Vit C, iron, other B’s and selenium to check my levels, as I’m already supplementing these? As you can see I’m currently lower than the ranges for T4 and T3. Can you please tell me what this means in terms of what’s going on with my body? I’d seen online that if you’ve had RAI you will need to have T3 prescribed as well, because I won’t be converting well. Do you agree with that? I don’t know if that is possible here in Spain. As for the celiac test, if I can get it, how long before it should I start eating gluten?
I also forgot to mention that I’m aware of a slight obstruction in the back of my throat @ thyroid area. It isn’t painful and doesn’t affect me, but I feel it there.
Key nutrients are ferritin, folate, B12 and Vit D. Vitamin D shouldn’t be taken on day of test, others can be taken as normal unless containing biotin (can interfere with test). Often in b-complexes. Biotin needs to be left off 3 days before test.
Magnesium is an unreliable test as blood levels are prioritised by body. Serum iron better to test full iron panel if suspected anemia.
If thyroid levels are very low it affects & slows almost all the body processes. ie temperate, metabolism, fat processing ect. It’s why the symptoms can be so varied - the thyroid affects almost everything.
Not everyone who had RAI requires T3. Many manage on T4 & the body converts what it needs to FT3. Some do find they struggle with converting - but first you need FT4 raised, if FT3 remains low and optimal nutrients does not help conversion you may be one who needs to look at T3 or NDT. Virtually impossible to have T3 prescribed in UK. I not familiar with option in Spain. Many self source.
I’d missed that you already have a gluten free diet. With gluten it’s all or nothing any trace causes an issue. So introducing to test might not be best option. You can always begin to reintroduce & monitor for symptoms at a later date.
Throat issues extremely common with low thyroid. I have a feeling of pressure at front of throat when levels are low.
I have Graves and had RAI thyroid ablation back in 2005 and was treated immediately with T4 medication at a dose of 100 mg a day -
I was dosed and monitored yearly on my TSH results and though I felt best on 125 mcg T4 daily, when aged 65 some 8 years on from RAI thyroid ablation my dose of the T4 was reduced back to 100 mcg daily so to keep my TSH in the range.
I became so much more ill with, I believe, the consequences of RAI thyroid ablation, but received no help and failed to get either T3 or Natural Desiccated Thyroid prescribed through the NHS - details on my profile page - just press the icon alongside my name.
It is essential that you are not dosed on your TSH reading but dosed and monitored on your Free T3 and Free T4 results and we generally feel best when the T4 is up in the top quadrant of its range at around 80% through the range with the T3 tracking just behind at around 70% through its range and at around a 1/4 ratio T3/T4.
RAI is known to be more difficult to treat as the HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop - on which the TSH relies on as working well - has now been disabled and this circuit loop now open ended as the thyroid has been burnt out in situ and unresponsive.
T4 is a pro-hormone and needs to be converted in the body into T3 the active hormone that runs the body and no thyroid hormone replacement works well if ferritin, folate, B12 and vitamin D are not up and maintained at optimal levels - so you definitely need these 4 co-factors run to support T4 conversion into T3 .
Stop all supplements around 7 days before the blood test so we measure what your body is holding rather than that recently ingested.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
As you can see your Free T3 and Free T4 are below the ranges and you must be feeling dreadful:
Initially you need to build the T4 up into the top quadrant of its range and it's then we will be able to see if you need a small dose of T3 alongside your T4 medication - probably to replicate a similar dose to that your thyroid once supported you with - or that you can't tolerate T4 and need to consider an alternative medication solution.
Some people can get by on T4 only medication.
Others find that at some point in time T4 doesn't seem to work as well as it once did and that by adding in a small dose of T3 with their T4 dose they feel improved.
Some can't tolerate T4 and need to take T3 only - Liothyronine.
Whilst others find their health improved taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.
I'm sorry you have had 2 rounds of RAI - I read the dose not as exacting as one might think - it is a toxic substance and known to be taken up by other glands and organs within the body and I am not aware of any positive research - ( from a patient's perspective ) - into the use of RAI thyroid ablation for Graves Disease.
Please ensure any eye drops or sprays or lotions are all Preservative Free - even those prescribed.
For all things Graves Disease I found the most well rounded of all I researched that of Elaine Moore - books and website - elaine-moore.com
Thankyou for sharing your experience with RAI. I’m so sorry you are still experiencing problems in your treatment. To be honest, I wish I’d never gone down the RAI route after resisting for so many years. My brain was so shut down though, I felt I had no option and wasn’t able to advocate or research for myself. I was told there was no other option as I had an adverse reaction of severe neutropenia to carbimazole and polypropuil. In the UK I was given a small daily dose of lithium until I could get the RAI treatment. When I moved to Spain, the doctor carried on prescribing it, though he said he had no knowledge of how to treat anyone with it. He asked me to stay on it until 6 weeks after the ablation, when he switched me to eutirox. I am trying to get a second opinion, but will have to travel to Barcelona for that in a month’s time. That means the cost of an overnight stay and train fares, so I hope that appointment goes well. It would be lovely to do some sightseeing - let’s hope I’m much improved if I’m put on a higher dose of eutirox! Thanks again, and good luck with your health and treatment.
Hello! Firstly, Thankyou so much Purple Nails, Pennyannie and Slowdragon for your very helpful replies and advice.
SlowDragon - I weigh 48.3 kilos and am 5’ 3”. I’ve been strictly gluten free since end July when I started the T4You think I should reintroduce before testing if the doctor will agree to a coeliac test. Instead of staying gluten free for now, as recommended by PurpleNails? It would be great not to be on such a restrictive diet, but I felt I had to do this in order to help myself. I would love a cup of English tea with milk too!!
Because of my sister’s osteopenia, caused partly I think by many years on a similar diet, I thought calcium is something I should supplement and monitor. But I will definitely ask for a DEXA scan.
What do you think about me buying OTC enzymes to aid digestion? Or wait till after/if I get a coeliac test?
I emailed my doctor yesterday with the results and asked if he will test for feritin, folate, B12 and D as you’ve suggested. I will let you know his response and what dosage he advises. The 50mg tablets I have are tiny so I don’t think I can split them and increase my dose to 75 without him prescribing them.
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