following on from my last post I had my appointment with my endo today and he has agreed to increase my dose but is very worried about increased risk of atrial fibrillation. He wants me to record my resting heart rate and blood pressure for the next few weeks. For the record ny last BP was 108/80 and is always around this level.
he’s worried that my t4 is up to 17 (12-22) as he likes it around 12-15 when on NDT.
My argument was that although my t4 is 17, my t3 is only 4.8 (3.1-6.8) so how can I increase my t3 without increasing t4, especially when I’m a very poor converter. Do I need to add t3?
So we are starting on the 3 grains and I am providing the heart rate info before the next appointment. He then said the blood tests aren’t necessary and he would rather go off heart rate??! I’m just completely confused now. Either you want the numbers or you don’t 🤷♀️
From the fabulous advice on my last post it was my understanding that AF isn’t a risk whilst my t4/t3 is in range but he said this isn’t true. I thought the risk was only with low or too high t3. Have I missed something? My head is spinning. Everything I thought I knew he has made me doubt.
Please can anyone give me some feedback to explain any of this? Thank you in advance. I’ll attach a copy of my bloods history for reference. Thank you! 🙏
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Knackeredandcross
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It doesn't matter where he likes the FT4 to be because it's not his FT4. And, given that T4 is basically a storage hormone that doesn't do anything much until it is converted into the active hormone, T3, it's hardly going to cause AF at 17!
Long-term very high FT3 may increase your risk of AF, but yours isn't even mid-range, so no danger there.
And TSH has nothing to do with hearts.
I don't think this man really knows what he's talking about. Sounds to me as if he's just groping around in the dark, hoping to grab onto something solid by chance. But, at least he hasn't reduced your dose, so that's one good thing. But, be very, very wary of him. I wouldn't trust him as far as I could throw him - and that wouldn't be very far!
Thank you, I thought I was going mad. He had me going round in circles; first focusing on numbers and then saying numbers don’t matter. I trust you guys on this page above all else so that has really reassured me. I thought I had missed something and I am a very thorough researcher! 😭 I have got a new specialist in mind who seems very much more up to date so I think this appointment has convinced me that I will switch.
Please may I ask: as i am such a poor converter would you add t3 to this regime or see how far you can go with the NDT first? I have just increased to 3 grains for the next 8 weeks and then review but the highest my t3 has ever been is 5.1 so I’m not confident that long term, even a good dose of NDT will do the trick.
NDT never contained enough T3 for me, either. So, eventually, I went T3 only, and felt much better. But good idea to try adding some T3 to your present dose of NDT. A lot of people do that.
Thank you very much. By next blood test if t3 hasn’t upped significantly do you just add 6.25mcg to your existing dose or reduce grains and add t3 please? Is t4 that important as long as you get your t3?
Well, it all depends. How much NDT were you taking when your FT4 was 17? That's just exactly mid-range, so not too high.
FT4 levels are very important to some people, and not at all for others. And you can only find out how important it is for you as an individual by trial and error.
So, you say you're 'starting' on 3 grains? So does that mean you were taking 2.75 grains when the above test was done? And you're going to stay on the 3 grains for six weeks and retest? Well, let's wait and see the results on 3 grains and then decide what to do next. You can't really plan in advance.
You are exactly right. I was on 2.75 when ft4 was 17 and t3 4.8. I started on 3 grains 2 days ago and will retest in 8 weeks. This dose previously put me over range but I wasn’t sure if it was a hashimyflate. I will post the new blood results then and see what you guys think. Thank you for all your time and expertise 🙏
Having both hypothyroidism and heart issues including recent confirmation of permanent AF I’ve recently had reason to look into this very aspect of thyroid treatment in some depth.
Have to say your Endo is not unreasonable in being wary of the effects of T4 in the upper levels as well as above range. Can’t agree with the disregard for blood testing & monitoring levels however!!
What I came across did surprise me and seems to have implications for pursuing removing symptoms by increasing T4 to high levels albeit still within range.
Interesting reading here … and it’s not just the cardiovascular concerns to be aware of …
“Second, our results are consistent with the existing literature on thyroid function and cognitive disease, where lower TSH and higher FT4 levels have been associated with increased dementia risk in multiple cohort studies”
Looks like avoiding much higher levels of T4 even in range is justifiable. Personally I would consider cautiously adding T3 within range and yes, monitor physical effects as well as checking full TFTs.
Any opinion on relevance/actionable advice regards to those who are not 65+, as the study participants were?
I have had heart palpitations/racing/or some other similar feeling in my heart. I am still under medicated and titrating as fast as my 6-8 week increments will allow me!
But I do think about this palpitation feeling, and although I am waiting it out, posts like this make me think a little more deeply about it.
I appreciate your points. I tend to feel similar, very high T4 levels not necessarily recommended. However Pearce will not use T3. This is potentially panic mongering AGAIN by Professor Pearce, who offers no alternative and who has no respect whatsoever for patients quality of life.
The Canadian website says high T4 and low T3 are the worst combination for AFib. I trust their scientific references above Pearce.
I’m interested in how they define exogenous hyperthyroidism as I like many members am on liothyronine as well as levo and oral T3 is known to over suppress TSH. So whilst my Ft4 and FT3 levels are well within normal ranges my TSH is below range. The average gp and endo too probably, would ask me to reduce my meds.
Looked at exogenous too but I am still unclear. Maybe jimh111 will see this and comment.
“Average”? On the forum we know average anything, is useless to thyroid treatment. There really is no such thing as an average patient and we certainly don’t want average endos etc. This is what I mean by saying “panic mongering by Pearce who offers no alternative”. I live under his ‘rule’. He makes it his business that no-one gets T3 under his watch in this area. If I found myself feeling good (and I think we are exquisitely aware of how we feel) on a combination of levo and T3, or indeed T3 only, I would always go for quality of life above TSH. Nothing else is good enough.
We need a tailored approach, something far more intentional is required. An average endo will find this impossible within the very basic treatment framework guidelines for hypothyroidism. Enjoy your combo!
Hi Knackeredandcross
Can't comment on the AF but your endo seems to be giving you the right run-around with his bull do-do.
Honestly it might be a good idea to watch the video put on the thread re Dr John Midgeleys (Diogenes) sad passing posted up by Helvella.Diogenes makes the very valid point that blood test results and scientific research has become divorced from the patient. He argues that every individual has their own set level of where there ft4 & Ft3 lies naturally.... This is never tested when we are well. That medics erroneously apply research in a blanket fashion to patients because of this. What's being lost is the clinical side, the patient presention their signs dymptoms. That should come first and blood test results second as a guide. No more.
I watched the video this morning. I've always believed it and followed this protovol as did Dr S, Dr P & two other endos I've seen over the years. Watching Diogenes reminded me of this as I've been put under pressure by another medical professional.
So step back. Don't just be guided by these research papers. They are not looking at the individual set points.... Just generic population ones. That's very different!
I've been on NDT for nearly 20yrs..and I definately need my ft4 higher but with in the range, likewise my Ft3. If not I have Hypothyroid signs and symptoms that appear.
It's a nonsense to have set rules for where you must be in the range. He talks about this. Have a listen. May Diogenes rest in peace.
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Help Please - Endo has increased my T3
Advice please on next steps ........thank you
Feedback from the Endo. 
T3 increasing my heart rate? Help please feel awful! 
Blood test results in advance of endo appointment + what are the MHRA guidelines for NDT?
