Good morning all. Can anyone answer my question - I had overactive thyroid in my teens then in 20’s had radioactive iodine followed by a ‘partial’ thyroidectomy about 2 years later. I had cause to need an ultrasound on my throat about 30 years ago and this showed I had no thyroid tissue there at all. All the while I have been on levothyroxine. About 3 years ago my endocrinologist put me on a combination of liothyronine 2mg & levothyroxine 100 life was brilliant. My gp took me off the liothyronine I’m November 2021 and just put me on levothyroxine 150ug ( as they can’t prescribe it anymore) I have had blood tests which now have shown a serum tsh level of 0.18MIU/L it was 1.08MIU/L in October 2021 and serum free T4 level of 18.6pmol/L - there are no figures for comparison.
Atm I feel awful. I suffer from fibromyalgia anyway but now I just want to sleep all day. Can’t be bothered to get dressed eat cook or even turn the tv over with the remote.
Before despite the fibro and thd arthritis I would get up go up our horse yard poo pick and be full of life. What is happening to me ? I do have to ring on Tuesday for a routine drs appointment but that is only due to a lovely hca noticing my blood works and flagging it up.
Since covid my endocrinologist has left and I don’t see a specialist anymore. Sorry for the essay. If anyone reads it and can help I’d be grateful.
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Poppyred300
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So, to backtrack - were you diagnosed with Graves Disease and the reason for the RAI thyroid ablation followed by a partial thyroidectomy a couple of years later ?
RAI is a slow burn and the dose not as specific as one might think, but ultimately over time, you will become hypothyroid and require full spectrum thyroid hormone replacement.
Primary hypothyroidism caused by RAI thyroid ablation is known to be more difficult to treat.
RAI is known to induce fibromyalgia and Sjogren's type symptoms :
RAI is known to trash vitamins and minerals :
I could go on but it's not good reading and all the above I found through reading Elaine Moore's first book and now there are several published books by Elaine Moore.
Elaine had RAI treatment around the turn of the century and finding no help with her continued ill health started researching this poorly understood and badly treated auto immune disease herself and is now a leading expert with a World wide following ;
A fully functioning working thyroid would be supporting you daily 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.
The thyroid is a major gland responsible for full body synchronisation and likened to being the body's engine and responsible for your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
T4 - Levothyroxine is a storage hormone and inert and needs to be converted by your body into T3 the active hormone that runs the body, which is said to be around 4 times more powerful than T4.
Your ability to convert the T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D.
It is essential that you dosed and monitored on your T3 and T4 blood test results and not a TSH, which I understand is all you may have been given in primary care.
We generally feel at our best when our T4 is in the top quadrant of it's range as this should, in theory, convert to a good level of T3 at around a 1/4 ratio T3/T4 - it is low T3 that causes all the symptoms of hypothyroidism.
Since you were deemed to have a medical need for T3 - Liothyronine some 3 years ago and felt better for having this vital hormone to replace your own ' lost ' T3 - your doctor can't just decide to stop prescribing - if he doubts it's effectiveness he needs to refer you back to the endocrinology team at the hospital who agreed you have a medical need.
You must insist that he reinstates your T3 and refers you back to endocrinology to asses your medical needs and since you felt better on a T3/T3 combo that should remain as your prescription.
It is all about the cost of T3 - Liothyronine and who should pay for your treatment and it reads that your surgery do not want to pick up the tab !!!
It is a post code lottery as many CCGs throughout the country have suggested Liothyronine not to be prescribed - due to cost.
If you go into openprescribing.net and then analyse you can see by CCG area and surgery how supportive your surgery are to prescribing Liothyronine for their patients.
Many of us on here, are self medicating, myself included:
I had RAI thyroid ablation is 2005 and now manage lingering Graves, thyroid eye disease caused by the RAI and hypothyroidism and have to buy my own full spectrum thyroid hormone replacement if I'm to have my life back.
You might like to join Thyroid UK the charity who support this forum and where you can find all things " thyroid " and a list of companies who can run the appropriate blood tests to include a TSH, T3, T4, antibodies, inflammation, and ferritin, folate, B12 and vitamin D if your doctor isn't able to help you as this is the information we need to help you help yourself back to better health.
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3
tukadmin@thyroiduk.org
Before considering booking any consultation, especially private one
We always recommend getting FULL thyroid and vitamin testing done
Vitamin levels frequently crash if T3 is withdrawn
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
Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
On T3 or NDT - day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last 1/3rd of daily dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
It was withdrawn due to the instructions in the NHS because T3 had bcome exorbitant but it backfired on those patients who had been well on T3 only - some for years.
It has now been reinstated but an Endocrinologist has to prescribe.
Put up a new post requesting information of the name of an Endo. in your area. Your post will then be closed but you will be sent a private message if a member has a name.
If GP wont re-prescribe ask to be referred to an Endocrinologist.
You haven’t included ranges but it’s likely the 18.6 is high in range. (Not over range) The TSH is under range and as doctors go by TSH they may say you are over medicated and reduce you Levo.
Do not agree until FT3 has been tested. It’s likely very low after Lio being withdrawn. You were likely originally required on Lio as you were poorly converting FT4 to FT3.
I have today spoken to a go at my practice and he is increasing my levothyroxine to 175ucg. I’ll see if this helps. Otherwise maybe I can get the liothyronine from elsewhere I’m off to turkey in 10 days. Turns out my endo left and thd new one (who doesn’t specialise in thyroid said I should be taken off the liothyronine! I’ll see what my bloods are like in 6 weeks. Thanks for all your help and advise.
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