Hi all I was diagnosed in 2021 after a thyroid storm, my endo said I would be on a high dose of Carbimazole and would need definitive treatment. Anyway I stuck with it and my thyroid has been well controlled with Carb for the last year I have been on 7.5mg one day and 5mg the next.I have asked to have my trabs checked to see where I am at but they don't get done, anyway I started feeling over medicated and my Tsh was climbing so I dropped by 5mg a week but hen my Tsh dropped to .84 and my T3 has gone up. I can never seem to get my T4 to rise to the middle without the T3 going high, anyway I'm going to put my results on here I presume I should increase to 7.5mg everyday for a while. I am now thinking my endo is right and that I should opt for a definitive treatment.
March results Mmh
Tsh 1.18 range 0.27-4.2
T3. 5.2. Range 3.1-6.8
T4. 14.9. Range 12-22
January results same range as above
Tsh 2.13
T3 4.6
T4. 14.3
August results
Tsh. 1.6
T3. 4.3
T4. 14
May results
Tsh 2.3
T3. 4.3
T4. 14.3
Ferritin levels are always low even if I have black pudding ect although I did manage to get them up to 30
Vitamin d was 50 right at the bottom of the range
I suffer constant Gerd symptoms and am getting really fed up, I'm absolutely petrified of going on the operating table as my aunt died on the operating table when she was my age. I can't have rai.
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Your TSH is back in range - and your T4 at around 29% with your T3 at around 57% through the ranges - so inverted - but after AT drugs this is not unusual :
It is inevitable that your T4 is low - as the body prioritises T3 levels over T4 levels - and most of us need our T3 up at around 75% through its range to enable our bodies to function properly.
Oh - sorry - well this is all the more reason why your T4 is low in the range as the AT drug is semi-blocking your own natural thyroid hormone production -
Your TSH is back in range which in my mind means this phase of Graves is over -
pennyannie I have an endo that's really good apart from the trabs thing, he will not discharge me back to the GP and still has me down 3 monthly blood tests and when I have told him I've felt poorly and asked if I could reduce slightly he has gone along with me. But due to the state I was in when I was admitted to hospital I don't think he would be for letting me try that.
Well - if nothing else ask him to run your TRab antibodies again and let us see if your immune system has calmed down enough for Graves now, not to be an issue.
You need your AT drug reduced which will release more T4 into your blood stream - and slowly you will find your T3 and T4 balance each other out - and with your T4 tracking just above your T3 reading in percentage terms.
Suggesting RAI is not in your best interests -
I hope nobody becomes as ill as I did - and I was just unlucky - but we do now have this research - which somewhat validates my own experience.
@pennieannie sorry I know I'm being a pain in the bum but if I reduced my meds too much would my tsh hit the floor and my T3 shoot up? That's what I'm.worried about.
You are not a pain in the bum - and just wish this forum was around when I was ill back in 2004 - and looking for answers - but never mind -
You reduce the AT drug very slowly by 2.50 mcg at a time - and get blood tests run at 6-8 weeks to see what has changed -
and we are looking for your T4 to increase which may in turn increase your T3 a little but that's ok as both are currently too low and need to re-balance themselves.
Your TSH may move - it may not - but it will not go crashing down low suppressed as before if there are no Graves antibodies circulating in your blood stream.
The NHS rarely run Graves abs again - but as your endo is ' nice ' maybe he can run this blood test for you and hopefully put your mind at rest.
A euthyroid - well thyroid on no medications - would have a TSH at 1.20-1.50 - with a T4 at around 50% with the T3 tracking just behind at around 45% :
pennyannie But does it not mean I still have high trabs because I only dropped by 5mg a week and my Tsh then dropped to .84 and that was only a few weeks ago but I didn't really include that in the results because that was a Gp one and they only do Tsh.
Graves is an Auto Immune disease and something has triggered your immune system to attack our body - and Graves generally only gets diagnosed when the immune sytem attacks the thyroid and eyes as these are major glands and organs we can't live well without.
These Graves antibodies - TRab - Thyroid Receptor abs circulate in your blood stream and get stuck / caught up on the fine hairs of the TSH receptor sites which then pushes down the TSH which in turn pushes up thyroid hormone production and why you ended up in hospital with hyperthyroidism and Graves Disease.
Graves is treated with an Anti Thyroid drug - either Carbimazole or Propylthiouracil -PTU -and all this drug does is semi-block your own new daily thyroid hormone production and slowly your high T3 and t4 levels falls back down into range and the AT drug is titrated down accordingly as otherwise you risk your T3 and T4 falling too far through the ranges and experiencing the equally disabling symptoms of hypothyroidism.
The NHS generally allocate a treatment window with the AT drug for around 15-18 months with the hope that within that time frame your immune system calms back down again and remission is found in that you are able to come off the AT drug with your thyroid returned to normal function without the need for any drugs.
When metabolism runs too fast as in hyper or too slow as in hypo - our bodies struggle to extract key nutrients through our food no matter how well and clean we eat -
So it is very important that we keep our core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D at optimal levels, which we can advise on, as if these co-factors are low - though likely in the ranges, these can further compromise and compound your health recovery.
We do now have some research you may find useful :-
Having definitive treatment simply means you have Graves Disease but now Primary Hypothyroid and treatment for hypothyroidism is not good, let alone for those without a thyroid and having Graves Disease as your TSH becomes a very unreliable marker of anything - but which the NHS treat and monitor you on !!
I had RAI thyroid ablation for Graves in 2005 and became more ill some 8 years later - I fell into this forum researching low ferritin- and started my own recovery back to better health -
I was refused all other treatment options to T4 - Levothyroxine - by my local ICB area and have been self medicating and buying my own thyroid hormone replacement medications since 2018 - and I am much improved as to how the NHS would have me.
Please do you research - do you have any eye issues - dry, gritty, excessively watering, light sensitive, pain - RAI may well exacerbate same or cause eye issues in some people and this toxic substance known to be taken up to a lesser extent by other glands and organs in the body and there now is a known link to cancer of the small bowel and breast.
The most well rounded of all I researched is that of Elaine Moore - books and website - though currently we can only access Elaine's website via this archive route ;-
I felt so sure I had written all this to you before - but it seems I've never replied to you before - though true this is only your 2nd post -
I sincerely apologise for replying, initially, quite casually, and just thought we were already on the ' same page ' so to speak and this 2nd post just an update within the first year of your treatment plan.
pennyannie you are right you have replied to me before and you had written about vitamin levels which I took onboard I have been eating foods high in iron as my Hemoglobin levels are fine.
I have been having treatment for 4 years on Carbimazole without a break. The results I have shown are for the last year roughly or less as I didn't want to type out the previous 3 years.
I was more concerned now of being under medicated as my T3 has gone up and Tsh has dropped after dropping just 5mg of Carbimazole per week. I was on 7.5 one day 5 mg the next then swapped to 7.5 just twice a week and 5mg every day if that makes sense? Then obviously Tsh has dropped and T3 has gone up.
I now primary care is hopeless as they only run a TSH which for Graves is the least reliable marker of anything -
My TSH was stuck down at 0.01 - after RAI thyroid ablation in 2005 - and it never recovered - and when I reached 65 ( 7 years later ) told I was over medicated and hyper - and my dose of T4 - Levothyroxine reduced - and so then started the decline in my health -
as being dosed only to get my TSH in the range - and not monitoring on T3 and T4 readings and dosing accordingly.
A TSH of .84 is still in most ranges - and it is normal for the TSH to respond to dose changes in AT drugs or thyroid hormone replacement -
if you still had Graves antibodies of any value circulating in your blood stream your TSH would still be stuck down low and suppressed - and not responding at all :
I can't tell you to stop fixating on the TSH - you have been through a horrible time and understand your concern - if your endo will not run the Graves abs again - you can do this for yourself -
pennyannie Oh god I know I'm coming across all wrong honestly I'm not fixating on my Tsh cause otherwise I wouldn't be paying Mmh to get my T3 and T4 done I knew though as soon as I saw the Tsh drop that my T3 would have risen which it did, my worry is saying for instance I dropped to 5mg everyday now Instead of 7.5mg twice a week and 5mg other 5 days my T3 might shoot up which is what I don't want. The T4 has been low since time begun well a few months after diagnosis anyway which was 2021.
I will pay and get a private trabs test and see where I am at but I just dread ending up back in hospital as I was in a really bad way. Thank you for responding by the way, I am awful at explaining things.
I'm sorry if my words upset you - it's just that mainstream medical fixate on the TSH - and thought it was ' catching ' - sending a hug or 3 :
Well the TSH - if working well - is meant to respond to the level of thyroid hormones circulating in your blood stream - and until your T3 is nearer where it needs to be - your body will prioritise T3 over T4 levels within your body.
No worries - you explained yourself very well - I just hope you feel I've helped explain away some of your anxiousness -
Peace of mind - is expensive - with the TRab private blood test being £100 -
ask your endo to do it -
you are already running your own T3 and T4 readings - and it is no better when hypothyroid as the hospital discharge you out into primary care for your doctor to monitoring you with just yearly TSH readings and an occasional T4 .
pennyannie Thank you, your words didn't upset me I promise. I will take your advice from before and reduce by 2.5mg a time the do a test and also will do a private trabs test. Truly thank you, you are a star.
pennyannie I have no idea perhaps it's because I deleted all my information and posts off the site because I noticed the same person kept saving all my posts which was a bit odd.
pennyannie Thanks but you wouldn't believe me if I told you a story of what happened to me on another group and I still don't understand what happened and I guess I will never find out.
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