I'm new on here. So glad to have found this site! I've posted before for a friend but now I'm looking for some help with my own thyroid medication.
I've had hashimotos for 34 years (since I was 20yrs old) and been on levothyroxine for most of that time.
Mostly I've been ok-ish. Just a low energy person, but managing.
At the moment I have more energy than for a long time. I've also got a lot of bone and joint aches. My heart feels sore and it flutters, or sometimes at night it beats hard and fast. I'm also starting perimenopause, so that may be affecting things.
My test results show a slightly high free T4. How are other peoples understanding of this? Is it actually too high? I'm reluctant to give up the energy I have at the moment, but could go down to 100mcg (currently on 125mcg levothyroxine).
I would also like to try an NDT but don't know where to begin. Any advice would be really appreciated!
Tests were done at 9am and 21 hours after dose of T4:
Free T4: 22.3 (12 - 22)
Free T3: 4.3 (3.1 - 6.8)
TSH: 1.47 (0.27 - 4.2)
Thyroglobulin: 56.5 (0 - 115)
Thyroid peroxidase antibodies: 104 (0 - 34)
Ferritin: 79 (30-264)
B12: 150 (37 - 188)
Folate: 33 (7-35)
Vitamin D: 103 (50 - 250)
CRP: 0.24 (0 - 3)
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Results show very poor conversion rate of Ft4 to Ft3
Do you always get same brand on levothyroxine at each prescription
Vitamin levels look good, though ferritin could be higher
What vitamin supplements do you take
Are you on gluten free diet or dairy free diet
Like many Hashimoto’s patients you’re likely to need the addition of T3 prescribed alongside levels
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download 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 SlowDragon, that's SO helpful. I will look into going to an endocrinologist. I'm in south Devon.
Been gluten and dairy free for about ten years now, and it has helped my health massively Previously had IBS, brain fog, very low energy. These all went away with the diet.
Been on the same type of levothyroxine 125mcg for the last few years. (Mercury Pharma (25mcg) and Almus (100mcg))
Supplements currently are CoQ10, Fish oil, Vitamin D spray. Occasionally magnesium for sleep.
I don't currently take a multivitamin but try to eat well (lots of leafy greens). A week before the test I had a Vitamin B12 shot because it seems to help with muscle and bone pain. I was surprised that the test result wasn't higher. I think I run low on B12.
This may help or not. I was having rapid heartbeat and sweats during the night, especially if I had had some alcohol (I don't drink much). Since going decaf last year it hasn’t happened again 🤞 so I think caffeine was part of the problem.
Thank you Ukie, that's really helpful. I was feeling my heart couldn't take much caffeine and realise I was going for decaf a lot of the time anyway. I'll try consciously cutting it out and see what that does. Glad its worked for you!
Ukie makes a good point. Sugar (also in alcohol which I have not touched for years) does this to me. I wonder if maybe when on thyroid medication, perhaps the body regains some of its sensitivity. Aware of some sensations absent for a long period of time.
Free T4 at higher than normal euthyroid levels has been linked to increased risk of atrial fibrillation and although your TSH looks ok and would therefore not red flag the NHS monitoring criteria it seems you are only achieving normal fT3 levels by pushing fT4 too high - a common phenomena on Levothyroxine only. I had the same issues and suspected my thyroid levels were affecting my heart so did some digging online and found loads of evidence of the hearts sensitivity to thyroid hormone levels, in particular the published paper (linked below) from large scale population studies - the conclusions speak for themselves and since then and with the support from my cardiologist and endocrinologist I have dropped from 125mcg levothyroxine to 85 by adding 7.5mcg of liothyronine (T3), this has reduced my fT4 from 22 to near normal 15 while keeping my fT3 around 4.4 instead of the crushing 3.3 it would be without the liothyronine at anything less than 100mcg of Levothyroxine. The Anderson paper (link below) calculates a doubling of risk of atrial Fibrillation at fT4 levels over 20 with increasing risks starting at over 16….
Whatever guesswork about our conversion efficiency of T4 - T3 the crucial point is excess fT4 is potentially dangerous long term and can only be revealed by T4 testing and not inferred from TSH alone; fT3 testing is essential to be able reduction of fT4 and determine if Liothyronine is necessary NHS does not pay attention to this so we have to lead with our own blood tests and use the published evidence of heart risk on top of our own symptoms to force endocrinologists to review and trial you on liothyronine unless lower levothyroxine doses alone can reduce fT4 to normal while keeping fT3 and TSH also normal and you asymptomatic!
Oh my goodness. This is such an eye opener and makes so much sense. I had heart tests, a 24 hour heart monitor and scan, from the GP about ten years ago and again five years ago. They just concluded 'nothing to worry about' although it did show a couple of arrhythmias and tachycardia. They implied I was unnecessarily worrying, and maybe just stressed. I was certain it was the thyroxine, but they said my TSH showed that was all normal.
I will read the paper and take it to the endocrinologist and get the T3 and lower the T4. I think my situation is very similar to yours. I'm glad you've found a way to help yourself and now others.
And I never had arrhythmias or the acute & chronic bradycardia I since suffered before being levothyroxine only; about which the docs initially implied (even stated outright) the same to me as they did to you, but now we now better!
Cardiac irregularities are unpleasant and scary and potentially fatal, something my endocrinologist glossed over but the cardiologist did not! In the Anderson study findings TSH levels were not shown to be associated with extra risk of AFib nor was fT3 - only fT4 so assuming anything from TSH alone is tantamount to medical negligence in the face of that evidence, which has been published for over 3 years now - they should all know better!
Good luck to you! - I hope you find clinicians who will re-consider all these issues and help you avoid uneccesary risks given your symptoms. You may also be interested in this paper: ncbi.nlm.nih.gov/pmc/articl... which is focussed on thyroid hormone and cardiology in relation to surgical patients but it gives handy insight into the background and medical science that is relevant to those of us on thyroid hormone replacement for whatever reason.
Thank you! (I've been calling around for an endocrinologist but no luck so far).
And yes they should definitely know better! I won't go on a rant but I can't believe the neglect and lack of education.
My grandmother and great grandfather had Hashimoto's and both were on Armour. My granny used to say synthetic thyroxine made her heart go funny... now I know why.
Your FT3 is far too low....caused by poor T4 to T3 conversion
Your symptoms are very likely caused by low T3
Low T3 means your metabolism is also running low, resulting in low energy.
Irregular heartbeat (arrhythmia) can also indicate insufficient T3
Your FT3 lab result is only 32.43% through the reference range....we aim to be roughly approaching 75%
For good health every cell in the body must be flooded with T3 by way of an adequate and constant supply....your thyroid medication/ FT3 level is not achieving this.
Your FT4 is too high.... although it is achieving more T3, by conversion, prolonged high FT4 potentially causes other problems, including an increased risk of cancer
You need to reduce your levo dose and add some T3
An endocrinologist should help you with this...see SlowDragon's helpful advice
Holy moly. Do you think I've done massive damage to myself? I expect I've been low T3 for most of my life then. I don't think I've been high T4 for more than a few years here and there because when my heart starts feeling funny I generally lower the dose.
Oh dear.
If I hadn't found this site by chance, when I was helping a friend, I would have just continued going with the GP's TSH testing. I never would have known.
Unbelievable. I could cry. The medical establishment really has a lot to answer for.
You've most likely discovered the potential risk of high FT4 before any damage has been done so don't worry.....but you do need to introduce T3 and reduce your FT4.
It took me decades (yes!!) to discover that I was being wrongly medicated.
You asked for info on NDT and I will PM you where I get mine. I would suggest trying T3 first, as NDT is not cheap. If your Endo agrees to try you on T3, give it a go first.
Starting NDT is simple - you buy it, it comes in the post, you look at it for a week as if it is an unexploded bomb and then you think to hell with it and try it. I have never looked back.
Just read your profile. Very interesting and I'm glad you've found your way back to health. Vitamin D and bone pain might be my issue too - I've been supplementing recently and I think this coincides. I'll try to keep going with it, hoping it's bone remineralisation.
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