I had thyroid removed 11years ago and have had suppressed TSH ever since
I have always refused to drop my thyroxine as I’m only on 100 ,GP always uses I will get heart problems as excuse to make medrop dosage
My latest results in September were
TSH 0.05. (0.35 -5.0)
T4 16.1. (9 - 20)
T3 3.7. (2.5 -5.7)
Lately I have had ectopic heart beats so I paid privately to see cardiologist
After all the tests I was diagnosed with mild to moderate ventricular regurgitation
He reassured me that it wasn’t t dangerous and wasn’t t caused by suppressed TSH
As my T4and T3 were in range.if symptoms get bad I can go on low dose beta blockers .he also wants me to go on statins as my cholesterol is 6.8
I have suffered from anxiety all my life and learned to live with it although it has been worse since having thyroid removed . I also suffer fibromyalgia.
I really don t want to take medication unless I have to but I suppose now I am 70 the risks are higher .
My question is has any one else experienced this condition since having thyroid removed ?
Piedo
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Piedo
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personally I found ectopic beats are linked to low Ft3 and improved dramatically with addition of T3 prescribed alongside levothyroxine
FT4: 16.1 pmol/l (Range 9 - 20)
Ft4 only 64.55% through range
FT3: 3.7 pmol/l (Range 2.5 - 5.7)
Ft3 only 37.50% through range
when were vitamin levels last tested
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)
Simply put, your cholesterol is high because your FT3 is too low. You do not need statins, nor should you be taking them when hypo. Your risks of whatever are no higher than those of any other 70 year old because high cholesterol does not cause heart attacks of strokes. And I'm very disappointed in your cardiologist for now knowing that, when he knew that your heart problems had nothing to do with your low TSH.
Your problem is low T3 - probably your fibro is down to that, too. Fibro isn't a disease, it's a syndrome. A syndrome is a bunch of symptoms. Symptoms have to be caused by something, and as you have low FT3 it's pretty certain that your symptoms, fibro, et all are caused by that. Raise your FT3 and you're going to feel so much better!
When were vitamin D, folate, ferritin and B12 last tested
Get tested and maintain OPTIMAL levels for good conversion of Ft4 to Ft3
Then look at getting T3 prescribed alongside Levo
Has to be via endocrinologist
Here’s link for how to request Thyroid U.K.list of private Doctors but also list of recommended thyroid specialist endocrinologists who will prescribe T3
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
Thank you all for your comments ,it confirms what think that low T3 is cause of my problems .Trouble is getting doctors appointments !it usually a different doctor who rings me so basically I ve given up !
One dr insisting referring me to rheumatologist I ve been waiting ten months I now have appointment on 4Jan 2024 be interesting to see what their opinion is.
I think after that appointment depending on outcome I will pay to see endocrinologist.
I tried a small amount of T3 years ago with 100 Levo but didn’t t feel right on it
I think maybe I should try again
I take vit d K2 b12 b complex and magnesium supplements,
BEFORE booking consultation get FULL thyroid and vitamin testing
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)
Once On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
I think that your on either to low a dose and therefore have very low FT3. When mine is low I have problems. I have no thyroid either and require an FT3 at about 6 to feel really well.
Once your FT3 is higher your cholesterol will lower.
Statins are a no in my opinion these are peddled as a cure all, they don't lower plaque that has been proven.
Beta Blockers cause Blocking of your adrenaline which you need to. Some hyperthyroid patients feel better on Beta Blockers because they lower the thyroid medication reaction. You require more not less.
If you have no thyroid, you need to be given T3 as well as thyroxine, as normally 20% of T3 comes directly from the thyroid gland.
In other countries like Germany, they automatically give you T3 if your thyroid is removed. I had mine removed over 20 years ago, was given 100mcg thyroxine initially, but didn't feel right. It was increased to 125mcg thyroxine, and that was worse, I had palpitations and thought I was having a heart attack! Eventually I saw an endo and he gave me 75mcg thyroxine and 20mcg Liothyronine (T3), which improved things. I am still on the same dose. Perhaps you need to have T3 and reduce the thyroxine too. My TSH is always 0.004 which the Doctor always argues about, but if you are on T3 it will be supressed. It really doesn't matter what the TSH is as long as the T4 and T3 are in range. The Doctors don't really understand the thyroid! She tried to tell me I would get heart problems and osteoporosis, but that's in my family and my sister (and Mum deceased) who has it doesn't have a thyroid problem.
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.
The thyroid is a major gland responsible for the full synchronisation of the body, from the physical through to the emotional, mental, psychological, and spiritual well being - the inner central heating system and the metabolism.
When on T4 monotherapy we generally feel best when our T4 is up in the top quadrant of its range with the T3 tracking slightly behind at around 60/70 % through its range.
Currently your T4 is coming in at around 65 % with you T3 tracking behind at around 37% :
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 to replace that little bit lost when they lost their thyroid - they can restore T3/T4 hormonal balance.
Some people 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 gland and derived from pig thyroids dried and ground down into tablets referred to as grains.
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.
Up until the turn of the century all the above treatment options were available for your doctor to prescribe - should the cheapest option, T4 monotherapy not restore your health and well being - sadly now your doctor has only anti depressants as a second line option and you need to be referred to an endo to be assessed and it does appear CCG/ICB financial constraints rather than medical need seem to be the order of the day in some areas of the country.
I think your main issue one of low T3 - it does work, please don't be put off - I thought it wouldn't work for me but my doctor back in 2007 never prescribed enough to make a difference - and declared it didn't work and cancelled the prescription after a month -
I'm with Graves post RAI thyroid ablation 2005 and refused both T3 and NDT in 2018 and now self medicate, DI Myself, and much improved.
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