Hello everybody. I am hoping for some advice on my blood test results. Here is some medical history. 1996 Diagnosed overactive thyroid
1998 T3 = 38, given RAI dose of 394 MBq.
1999 T3 = 7.5 (top of range 6.9) and T4 = 23 (top of range 22), given second RAI dose of 394 MBq.
Now underactive.
I wonder do I actually have any thyroid left?
2000 Moved overseas, self medicating. Judge my dose by symptoms and check the following obs. Current levels over previous 2 months are:
Pulse - 58 to 65
Temperature - 36.6 to 36.8 but sometimes lower
BP - 118 / 71.
I seriously regret the RAI treatment.
2021 Referred to an Endo, at the time I was taking 200 mcg thyroxine TSH was 0.014 and T4 was 19.5 (range 12 to 19). Endo wrote to the GP stating that I had no symptoms of overactive but did have symptoms of underactive. Regardless, he did nothing more than to instruct GP to reduce my dose every 3 months and send me for mental help when I get even more depressed.
I can't function on 200 so currently taking 225 mcg thyroxine and refuse to lower my dose because it brings back all the underactive symptoms. Judging by my current symptoms I would consider increasing thyroxine but medichecks tell me I am heavily overmedicated so any thoughts and advice from all you self taught experts would be greatly appreciated.
Latest results attached. Fasting blood test carried out at 9.05am 24 hours after last medication. I don't currently take any vitamins. Advice on how much of each vitamin I need to take to bring my levels up would also be appreciated. Sorry for such a long message and thank you all.
Written by
Houdini415
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It's not so much that you are over medicated - but that you are not converting the T4 into T3 the active hormone that runs the body and seeing as you haven't a thyroid you would like feel better on a different option of thyroid hormone replacement, as T4 monotherapy is not not working well for you.
T4 is basically inert and a storage hormone and needs to be converted by your body into T3 and T3 is said to be around 4 times more powerful than T4:
In order for T4 to convert well to T3 you do need optimal core strength vitamins and minerals - namely ferritin, folate, B12 and vitamin D.
I now maintain my ferritin at around 100 : folate 20 : active B12 75++ ( serum B12 500+ ) and vitamin D at 100:
I also take an adrenal glandular and am self medicating as I was refused any treatment options other than T4 when I became very unwell - press on the icon alongside my name if you wish to read my profile and everything I've ever written on this amazing forum.
The thyroid is a major gland and responsible for full body synchronisation including your physical, mental, emotional, 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.
I too had RAI - I too totally regret this treatment but in 2005 I wasn't even given a choice.
RAI is known to trash vitamins and minerals.
RAI is known to be taken up, to a lesser extent, by other glands and organs in the body.
RAI is known to trigger symptoms similar to those of Sjogren's Syndrome and fibromyalgia.
I can go on and I really do not understand why this treatment is still offered in a health care setting ;
Some people find that T4 seems to not work as well as it once did and need to add in a little bit of T3 - likely to replace that little bit lost when they lost their thyroid - thereby making a T3/T4 combo of medication which then rebalances T3/T4 hormones.
Some people can't tolerate T4 and need to take T3 only - Liothyronine - as you can live without T4 but you can't live without T3.
Whilst other people find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as the human gland and derived from pig thyroids dried and ground down into tablets referred to as grains.
No - when ill we seek out medical help and are vulnerable and it is not foolish to trust the medical profession.
I'm seriously angered that my symptoms were all a mystery to the NHS post RAI thyroid ablation - after over 2 years of various O/P appointments and holding onto hope that someone could relieve my pain and explain to me what had gone wrong with me !
When my doctor then referred to me as " just with low ferritin and a conundrum "
I started reading up for myself - and thought - maybe that Graves had come back as it was the only illness I'd ever been diagnosed with and learnt it never went away and my current symptoms those of RAI damage.
Elaine Moore's very first book Graves Disease - A Practical Guide - was my starting point and now I self medicate as fighting the NHS simply exacerbated my symptoms.
There is much to read and understand - but basically you must not be treated on a TSH reading - your HPT axis - the Hypothalamus-Pituitary-Thyroid feedback loop on which the TSH relies is now broken as this circuit is broken as your thyroid is not there - it is burnt out in situ - and you need to be dosed and monitored on Free T3 and Free T4 readings :
Sadly in primary care within the NHS system the TSH is generally the only measure run, though sometimes you get a T4 - but this is not enough information and we all deserve the correct monitoring which should be a TSH, Free T3 and Free T4.
I had to pay the Laboratory to even run a T3 reading and then with the T3/T4 imbalance obvious - still refused treatment - so now I stay away.
Just a couple of books, apart from Elaine Moore, that helped me get a handle on my situation :
Your Thyroid and How To Keep It Healthy - Barry Durrant-Peatfield.
Tired Thyroid - From Hyper to Hypo to Healing - Breaking the TSH rule - written by Barbara S Lougheed -
who went through this treatment and ended up writing about how everything is not ok afterwards - as did Elaine Moore and what prompted her to research Graves and write about alternative, holistic options and empower others to read up and become their own best advocate, and get better despite this treatment.
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