So I had radioactive iodine treatment about 20 months ago and have since been on 125mcg levothyroxine whoch has now got my levels in normal range. However, the joint pains especially in left hand and both legs are horrendous as is the brain fog and weight. I was started on 50mcg hrt patch at the same time as my iodine treatment so also in menopause at the same time. I am fatigued and never get a pain free night sleep that isn't co tinially interrupted with pains requiring me to turn constantly. I go to the gym and try to eat healthy but the weight still isn't coming off and seems to sit mainly around my middle which is depressing me a lot. I have started taking b12 vitamin d and selenium vitamins for about 4 weeks now to see if it helps.
Any advice would be greatly appreciated.
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That's what I was thinking but everytime I spoke with the endocrinology specialist nurse about my symptoms she basically wasn't interested and just said oh right, I don't know.
I agree, I'm a nurse myself and if I simply said oh I don't know then I would be expecting a complaint to be made. My gp surgery aren't much help either as its the hca who does my bloods and when I ask for the result she just says the one result so not sure if they're testing for t3 and t4 but I will be sure to ask next time as I'm really struggling. I can't believe how bad symptoms can be x
I sympathise, i also had RAI and levo did nothing for me and the weight kept piling on no matter what i did. After joining this forum and gaining some knowledge i started taking NDT thiroyd and the change was dramatic. However, it has become unavailable, and now all NDT prices are unaffordable for me. On one of my visits to the gp i came clean and told her i had been taking thiroyd. She was not happy and told me she would report this to my endo. I said go ahead as you are not offering me a decent level of care and i had to go down my own road. Fortunately,my endo agreed to trial me on t4/t3 combo at the beginning of covid but it was about 15 months before i could visit my endo due to lockdowns etc. I told my endo that combo had changed my life and i lost 20 lbs and feel "normal" again. They are now keeping me on it indefinitely and told me i only need to attend the endo clinic every 2 years instead of one. Please persevere. Good luck, i feel your pain
TSH, FT4 & FT3. (FT3 not always tested by NHS, many use private tests)
Thyroid antibodies should have been tested at least once when originally diagnosed (TPO, TG, TSI or TRab)
levo wont work well unless nutrients are optimal - have folate, ferritin, B12 & vitamin D been tested?
If thyroid issue autoimmune many find gluten causes issues. Was celiac screened? Even if negative it can be worth trialling strictly gluten free diet. Test for allergy first.
Majority manage well on adequate Levo replacement. TSH in lower part of range eg 1 and FT4 in top 3rd of range. FT3 over 50%.
Some struggle convert to good FT3 levels and if this becomes a consistent issue despite good FT4 & nutrients then consider next stage.
NDT & synthetic T3 - (lio) are not offered in NHS primary care & can be difficult to obtain from specialists although should be offered if clinical criteria met.
So is your diagnosis Graves Disease and now you are post RAI thyroid ablation ?
Were you initially diagnosed and prescribed Anti Thyroid drugs - Carbimazole or PTU - if so do I presume this treatment option didn't work for you and why RAI was suggested ?
Having Graves will have put your body in a heightened state of total body exhaustion and repair and recovery will take time and until your Free T3 and Free T4 levels are optimal, exercise, getting back into shape and going to the gym can all have a negative effect on your overall health and well being.
RAI is a slow burn but ultimately it will fully burn out your thyroid in situ rendering the gland fully disabled and you likely requiring full thyroid hormone replacement.
I presume you are taking T4 - Levothyroxine - and working towards an optimal dose with regular blood tests every 6-8 weeks ?
It is essential that you are dosed and monitored on your Free T3 and Free T4 readings and ranges - do you have any results to share with forum members ?
T4 - Levothyroxine is a pro-hormone and needs to be converted in the body into T3 the active hormone that runs the body and said to be around 4 times more powerful than T4.
No thyroid hormone replacement works well until your core strength vitamins and minerals those of ferritin, folate, B12 and vitamin D, are up and maintained at optimal levels and we can advise on these if you have any results and optimal is not just anywhere in a NHS range some of which ranges are too wide to even be sensible.
RAI thyroid ablation is known to trash vitamins and minerals :
RAI can also trigger Thyroid Eye Disease - TED - are your eyes ok - or dry, gritty, or weeping and / or light sensitive ?
RAI is also known to be more difficult to treat as you can't rely on the TSH reading being an accurate reading of anything - though in primary care this maybe all you are being monitored treated and dosed on.
I, like many other forum members now arrange our own Private blood tests through companies listed on the Thyroid UK website - thyroiduk.org - and many posts the results and ranges back up on here for considered opinion and this is how we help each other back to better health.
We generally feel best when the T4 is up in the top quadrant of its range with the T3 tracking slightly behind at around 60-70% through its range.
I had RAI thyroid ablation for Graves back in 2005 and didn't really start any research until around 10 years later - and found the most well rounded of all I researched that of Elaine Moore who also went through this same procedure a few years before me.
Elaine is Stateside, and her books and website have a world wide following as she continues to research and suggest more holistic treatment options for this poorly understood and badly treated Auto Immune disease since simply removing the target of the immune system attack, the thyroid, does not solve the underlying AI health issue, for which mainstream medical have no cure nor answers.
Hi, so yes my diagnosis was graves and I tried the carbimazole however it had no effect and therefore, I was recommended to go for radioactive iodine whoch was about 20 months ago. My levothyroxine has bee 125mcg daily for the last year and I now get bloods done every 3 months but they don't just give me the results. I need to ask and all I was told was it was fine as showing 1.4 but I'm not sure if this was t4 level. I will certainly be asking to have my results printed out next time and I can check and share. It is so reassuring to know other people are feeling the same. I felt I had to start back at the gym and diet to help with my weight or try to as I have had an ED in the past and the bigger I get, the most triggered I get to basically stop eating and isolate myself which I don't want to go back to. Couldn't believe I had graves and yet gained weight but they seem to think it may be due to going into menopause at the same time. Scared to try coming off the hrt I case things get worse
My levothyroxine has bee 125mcg daily for the last year and I now get bloods done every 3 months but they don't just give me the results. I need to ask and all I was told was it was fine as showing 1.4
That’s most likely TSH at 1.4
Just testing TSH is completely useless
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone 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 some GP surgeries still 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.
come back with new post once you get results
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Which brand of levothyroxine are you using for 100mcg and 25mcg tablets
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common with autoimmune thyroid disease
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
What is an ED ? and I read when taking HRT some need their dose of Thyroid hormone replacement increased.
I was overweight when diagnosed Graves - and understand now I have been hypothyroid from a child - whilst on the Carbimazole I had a few months of loosing weight and feeling fantastic while eating for England - then had RAI thyroid ablation and back to how I'd lived my life as hypothyroid but with Thyroid Eye Disease and longer term some RAI knock on consequences.
Graves has both Blocking and Stimulating antibodies and these 2 extremes either / or both will take control of your thyroid and can cause a myriad of symptoms - or for others very few symptoms as theses opposing antibodies can cancel each other out leaving you feeling relatively normal for you - and some people loose weight - others gain weight as your thyroid controls your metabolism.
Everyone's journey with Graves is unique to them though there is likely a genetic predisposition and something has likely triggered your immune system to turn and attack your body rather than defend it, and what and why is obviously the 64 million $ question for you.
The thyroid is a major gland responsible for full body synchronisation from your physical ability through to your emotional, mental, psychological and spiritual well being, your inner central heating system and your metabolism.
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 - with T3 said to be around 4 times more powerful than T4.
Some people can get by on T4 monotherapy.
Some people find T4 seems to not work as well as it once did and that by adding in a little T3 - likely at a similar dose to that their thyroid once supported them with and making a T3/T4 combo of meds restores their hormonal balance.
Others can't tolerate T4 and need to take T3 only - Liothyronine.
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid and derived from pig thyroids dried and ground down into tablets referred to as grains.
Maybe arrange a private full thyroid blood panel so we can actually help and advise more thoroughly- it's around 10/11 blood tests, TSH, Free T3 and Free T4 - thyroid antibodies, inflammation, and ferritin, folate, B12 and vitamin D -
It should always be a fasting thyroid blood test to be arranged by 9 am in the morning and just take in water over night and do not take your Levothyroxine until after the blood draw so having left around a 24 hour window from last dose of T4 and stop any supplements around a week before hand so we measure what your body is holding rather than that just ingested.
It gives me no pleasure tapping in the following research paper but feel you need to be aware before finding it somewhere else - ncbi.nlm.nih.gov/pubmed/306...
I had a quick look and got Erectile Dysfunction - and thought you female !!
No worries - ok - so guessing this area of ' triggers ' not new to you -
it's complex and there is no easy fix.
First step is get the full thyroid panel organised following the guidelines already detailed above - and we can talk you through what it all means and give you the stepping stones back to better health once we have the information.
You are likely woefully dosed on Levo. You need to take charge of this yourself. You can get private finger prick blood test kits to do at home and send off. You can then post the results here for help understanding the issues you have and how to overcome them. You then have to firmly ask the GP for the raises you need in Levo. 125mcg is not a large dose. And that's without knowing how well you convert.
You are legally entitled to a print out of all blood test results with ranges. So feel no guilt. Ring the surgery and ask reception for copies of all your blood tests from 6 months before your RAI to now. Ask for them to be emailed to you. I get mine in minutes. But I never gave them the choice to say no. If you encounter difficulty, write to the practice manager and request the same. If you sign up to the NHS app on your phone all your test results will be there for you as soon as they are available to the surgery.
Menopause often brings thyroid issues to a head. It made me hypo. I'd probably struggled with lower levels of hypo for decades but menopause walloped me with it. You don't want to come off HRT. The benefits of it far outweigh the negatives. But you do need to be on enough of it and a 50 patch probably isn't enough at all. Some absorb patches better than others too. Ask to trial a 75 patch and see how you feel on that. One size does not fit all with any hormones. But GP's behave as if they do.
I can understand your worry about the diet etc. But leave the gym alone for now. A nice walk each day is enough and don't diet. You need adequate carbs for conversion of T4 into active T3. Time for dieting comes later when you feel well. You have far too many symptoms right now.
So - way forward:
Get a home blood test for TSH, FT4 and FT3 and come back with that. Also get your vitamin B12 tested alongside your vitamin D and folate and ferritin (part of the iron panel). Stop any supplements that contain Biotin a week before the thyroid blood test as it can affect the results. Draw the blood before 9am and don't take your daily thyroid meds until you have finished. You want to leave 24hrs from the last tablet to the blood test.
I am signed up to Patient Access (other services are available) so get all my test results there. NHS has a similar site and can make appointments and order meds.
my now 32 yr old had t cancer age 20. it took a while & v good german specialists to stabilise her. she developed gut issues & acne after radio iod. acne gone but she has a very honed diet. shes super on top of things & thinks im too slack 🤨 its not me its nhs!!! she has no idea!
I suggest you have a look at this link to a very good article in the British Medical Journal discussing what the 'normal range' really is. Very readable.
The normal range: it is not normal and it is not a range
Loved this …as someone whose TSH has been at times almost imperceptible ( 0.01 to 0.9) for nearly 25 years. One simple question my doctor asked was HOW DO YOU FEEL?? Only when tests were reduced to TSH alone did other docs suggest over treatment and reduced meds with consequent hypo symptoms in 2017. My doc has retired but got an endo who asks HOW DO YOU FEEL.?? He’s got me on tiny dose of T3 with my T4 and that’s made a huge difference and he acknowledges poor conversion. Hallelujah !
However it’s like surgery has last word … in not paying for T3 so hospital pays!
I had RAI after my throid was removed because of thyroid cancer. Many doctors have hinted that RAI is at the root of all the health problems I’ve had since - including joint pain, fatigue and bladder issues.
Only one doctor has been brave enough to commit to this view.
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Please help!
