I was supposed to have a pacemaker & then an ablation 6 weeks later at Liverpool heart hospital as part of the pre op they did a blood test TSH 0.001 they cancelled the ops & referred me urgently to an endo I’m due a telephone consultation with endo on the 5th September which is absolutely ridiculous. Liverpool also did an echocardiogram which showed aortic stenosis severe so I’ve been put on the waiting list for a valve replacement 1 year waiting list.
Im so worried that they won’t do any much needed operation unless i can get my TSH up , I had a total thyroidectomy 2013 put on T4 & T3 replacement therapy 75mcg levo & 20mcg lio then NHS stopped the T3 since then I’ve been purchasing T3 25 mcg.
I’ve had problems with suppressed TSH because of the T3 for years Slow Dragon helped me with dosing and I have felt okay but my gp got so concerned he wrote to an endo and cardiologist both said I am overmedicated & I reduced my T4 to 50 mcg and T3 to 12.5 & my TSH is still suppressed @ 0.001 it’s imperative that I find a way to raise my TSH.
I knew the endo would want a recent blood test so purchased the gold Thyroid test from blue horizon got the result today TSH still suppressed 0.001 Vit D low & B12 high I have attached a copy of the test results.
I did everything right for the test early morning draw 24 hours after taking 50 mcg of T4 & 12 hours after taking 12.5 mcg T3. What else can I do??
Please can someone help me I’m desperate, I’m wondering if they left some thyroid behind after my total thyroidectomy.
Any help or advice will be greatly appreciated
Thank so much
Hilary
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hilary77
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If you are taking T3 then it nearly always suppresses T3. Its just what it does. Does your Cardio know you are self sourcing T3. If not then you might need to be honest. Is your procedure under a local or general anaesthetic. If its local you could argue that the risks are much less than under a general. It sounds as though the anaesthetist might be unhappy with a suppressed TSH.
The only other option is to stop the T3 for a while. Not ideal and it could take some time for your TSH to come into range. What was your TSH like on just Levo? Have you ever been on Levo monotherapy?
Such abominable ignorance! They should be aware that TSH has nothing to do with hearts, that taking T3 suppresses it and the heart needs lots of T3 to function correctly - it's far worse for your heart to have low T3 - and yours is still very low.
But, I'm afraid, the only way to raise your TSH is to stop the T3 completely. Lowering the levo dose just won't do it whilst you're still taking T3. I honestly don't think there's any other way.
I find this absolutely ridiculous. My TSH has been deficient for about 30 years because when I was diagnosed when I lived abroad I was put on T3. Eventually on return to the UK they got me back on T4 for awhile but my TSH never budged. Two years ago I had a serious spinal surgery, which with my clotting disease was life threatening. Not once did anyone mention my TSH!
What happens if you come off your T3 and your TSH doesn’t budge either? You risk making yourself unwell before your op. I’d come clean and argue it out with your heart team NOT the Endo you’ve been sent to. As Greygoose says they should know about the affects of T3 on the heart.
Your TSH will be suppressed and that's fine. Here in France they only worry about a low FT3 which you have.
After my TT I was given a letter by my professor surgeon stating that my TSH should always remain suppressed. It's the FT3 that keeps you alive. Why don't they realise that.
When I went for my ear tumour operation the anaesthetist was only worried about the FT3 result. I just hope that it can be sorted out for you.
Hi, that’s amazing that in France they are only worried about the FT3 levels and understand that TSH should always be suppressed when taking T3.
May I ask you where about in France you live? It is the first time I heard this, so very interesting and comforting. Only hope this would be understood by British medical professionals. Best wishes.
Now I live in Brittany but have T3 prescribed to me free of charge. I also take NDT.
My GP here is not that good but understands the T3 thing anyway. Before when I lived in the Vienne my GP even took my blood pressure readings in both arms too. I had to look it up and it's the correct thing to do. I used to have the hammer job on my knees and ankle too for reflex.
I don't know about anyway else in France it could be different.
Thank you for your kind reply. That is amazing. That is ‘proper’ medical care unlike here in the UK. I too had a TT back in 1980… but was never prescribed Liothyronine… I struggled for years, feeling so unwell. Finally, about 9 years ago I decided to see a decent endocrinologist privately (had seen one before privately too but he was useless so waste of money), who couldn’t believe I had not been prescribed T3,.. so he passed me back onto the NHS and gave me an appointment to see him in hospital and prescribed Liothyronine. However, the financially greedy GPs at my local practice refused point blank to prescribe it for me, only interesting in making money for their practice. So the consultant decided to prescribe it from the hospital pharmacy. Thank goodness he is one of the rare enlightened endocrinologists …. I am French and I really miss the superior medical care I used to have when living in France. It’s always a battle here to get things sorted… they always have the pathetic ´ wait and see ´ attitude… which can be vert dangerous for patients. What is the point in waiting for the patients’ health to deteriorate further before acting ? They clearly have no understanding of prevention. I know not everything is perfect in France but the medical care is still superior to here. Keep well.
I think that it was probably my Professor Surgeon who appeared to know at about it.
When I moved to Brittany I took a copy of the letter to my new GP who carried on prescribing the T3. AS it's made here in France the cost is much lower it used to be about 4 to 5 euros for 30 t3 a few years ago.
Not everything is (with it ) here in Brittany we still have the piped music at the supermarket and a new sushi bar which closed after only 3 months.
I will have to look up Oise sounds bad news for T3.
Oh, I managed to get it prescribed by different doctors. But some refused to prescribe it because they didn't know what it was, and others prescribed it BECAUSE they didn't know what it was! It's a sort of lucky dip. You just have to keep trying different doctors until you find one willing to oblige.
Sushi bars are going strong, though - my granddaughters keep them going just the two of them! lol Myself, I can't stand the stuff. But I really can't remember the last time I heard piped music in a super-market! Not in the last 25 years, that's for sure!
My thoughts based on my experience of having an unreliable TSH when on T4-onlyand now being in T3. I would do all of the following.
1. Have you got evidence from when you were on T4-only that your TSH was 'unreliable' (this is a medical term) in relation to your fT3 and fT4 levels? If so write to them saying so. I expect your TSH is suppressed because you're taking T3, but this would get them to not look at TSH.
2. Admit to dosing T3. This is really important. Stress that T3 suppresses TSH. They need to know that you are on T3 in case you aren't able to dose it yourself. Good T3 levels are essential for recovery from an operation. I need my fT3 to be at 75-80%. See thyroidpatients.ca for research based articles on the importance of T3.
3. They might listen to your results if you get them done by an NHS lab. So, use a monitormyhealth.org.uk blood test to get TSH, fT3, and fT4 done (£32-10% = £28.80). (Use code THYROIDUK to get 10% off.) Time the test for 13 hours after last T3 dose and 24+ hours after last T4 dose. Stress that thyroid hormones fT3 and fT4 are well within range.
If you go on the Thyroid UK website there is a list of T3 friendly endos. You could get a zoom call (usually a tad cheaper and no travel hassle) and tell them your issue. I know a private meeting will be around £240 for the initial appt. But I get Thybon Henning via private endo. It’s £60 for 100 x 20mcg tablets which works out cheaper than some of the supplements I buy. My update consultations, which are just 10 mins, now cost £100. It keeps it all above board for me and my GP doesn’t stress about my levels. I get levo from the GP. And the endo requests bloods via the GP too. My TSH sits at 0.01 and if it rises to 0.02 I feel really poorly.
Hopefully you will be able to get a letter/information to the operating team which proves to them there is no issue with your TSH.
I came across some research that showed if the TSH is low for some time, the "feedback loop" stops working, and no matter what you do, the TSH will remain rock bottom. Cant find it now.
Personally I would ask why keeping your heart beating is less important than your non existing thyroid!
You must be going through hell, and I am so sorry.
I had open heart surgery at same hospital with suppressed tsh down to your level. I also have t4andt3 supplementation. Will check and send private message later
Proof positive that this is not a ‘joined up’ health system. Somebody has paid ‘some’ attention to TSH. At least someone is ‘checking’. But checking what? Half baked information.
I had a major op before I was diagnosed with hypothyroidism, I’m sure my long recovery time which confused the surgeons, was due to my thyroid levels being off as I didn’t get tested until some time after. I would definitely want healthy thyroid levels rather than an in range tsh before an op now.
I am so so sorry to hear your op has been postponed due to suppressed TSH, My tsh also suppressed and I had total hysterectomy some years back and no mention of my suppressed tsh by my surgeon or anaesthetist. This is so distressing for you. As other lady mentioned, stopping T3 may help but at what cost to your health, and if tsh suppressed for long time ..it may take time to come up. I just wish a favourable outcome for you.
My question if I had no thyroid would be why do they want the tsh awake and sending messages to something that doesn't exist??? - really don't get it.... 🤷♀️
It was for this thread .. to be aimed at the doctors, not the forum ... if you're on medication becoz you've no thyroid & the medication has understandably put your pituitary/tsh to sleep.... why do they want to wake it up? What's the point if it has no job to do??Just the way my brain works ... but sorry if this just confused the issue
It's just that this forum member is getting notified and considering they have just lost a loved one - it does not seem appropriate - to me - to keep tagging on comments :
Your thinking is not wrong and your brain is working well and logically :
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