I was wondering if anyone who has known issues of an inability to convert sufficient T3 in order to feel well, could let me know what has worked well for you. I should say that I am 74 but am relatively active at times but need lots of rests throughout the day as I have ME/CFS diagnosed 21 years ago.
In 2001 it first became apparent I needed thyroid and adrenal support and I was put on hydrocortisone and Armour by a private Endo but I always had a tendancy to go hyper quite easily and would have to lower my dose of Armour. I did go up to 2 grains but would still experience episodes of racing heart and sweating/dizziness and high bp at times of the day so would drop down to 1 1/2 grains but I was never well in the whole period with frequent viruses and frequent episodes of post exertional fatigue. I have never been able to walk for more than 20 minutes non stop ever since 2000.
Over the last few years I have developed high blood pressure which my GP insists is due to the NDT and after having the 2 vaccines plus booster I couldn't control my bp without 40 mg Propananol x2 plus Candersartan which was a horrible drug. I knew this would impact my thyroid at some time but because of all the very hot weather we had this year it seemed to mask what was happening but by the end of August my energy had slumped and I could do way less than was normal and I had developed almost daily migraines so in September I added another 1/4 grain NDT twice daily but it didn't make any dfference.
It became very obvious by early October that I needed to do something different when I started to become so cold and realised so I added in just 6 mcg twice daily to the 1/2 grain (plus 25 mcg thyroxine taken in the am) I was taking twice daily. After 2 weeks I could really feel the difference but was still running out of energy quite quickly on walks and things like shopping but in myself I felt like a different person.
I always seem to respond to very small adjustments and will quickly get overstimulated probably because I have adrenal insufficiency for which I take 6 1/2 mg Prednisolone daily.
I am trying Bitiron, half a tablet on waking and the other half lunchtime but so far in the mornings it doesn't feel quite enough as my legs still feel a bit weak so I wonder, as I know I have a conversion issue, would it be better to add another small dose of T3 or add the 25 mcg T4 that my GP prescribes me but which I stopped because there is 25 mcg in the half dose of Bitiron.
I did do a blood test this morning but the sticker that was meant to go on the tube was missing so I have got to wait for another kit therefore I don't have a recent one to quote. The blood tests done in anuary and February were around mid range for T3 and 11 and 15 for T4 with a TSH of <0.05 which is typical for me ever since I have been on NDT.
Apologies for such a long post.
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Snoopydog11
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To be able to tolerate thyroid hormones, in particular anything including T3 we need optimal levels of key nutrients. These are ferritin, folate, B12 and d3. Have you had those tested lately? Sometimes your GP might be kind and run them for you.
If these levels are low in range we cannot use our thyroid hormone so remain with symptoms. Conversion is also helped too.
My levels are always good when tested, D3 is top of the range and B12 around 600, ferritin was 58, folate 13. I eat an excellent diet and cannot tolerate any folate supplements because they give me daily severe migraines so I have to get it from my diet.
I have pots too. There’s a medication that’s much better than Propranolol called Ivabradin. Perhaps your cardiologist might switch you and then your thyroid levels won’t be affect?
As hypo people even on treatment we suffer from absorption issues caused by low stomach acid. Nothing to do with poor diet. If you could get your ferritin to 75/100 your heart rate would improve and it would also benefit your thyroid replacement.
I do know a bit about Ivabradine but not everybody tolerates it very well from what I have read on the ME forums. To be honest as I am 74 and I have never seen a cardiologist I don't really want to start now as the Propananol controls the problem very well. It might make getting the right balance more difficult I appreciate but the effect of the small amount of T3 has made me think I would do better just to add that for a while and then reassess.
Obviously I will do a full thyroid panel too once I have done this for about a month. One intereting thing has shown up already (day 3 of Bitiron) is that my blood pressure is quite a bit lower than when I have been on the NDT at 1 grain so maybe my GP did have a point when he was telling me it could cause blood pressure issues. I would have taken a slightly higher amount of T4 and very slightly higher amount of T3 when I took my blood pressure on day 3 of just Bitiron.
Unfortunately I cannot stop Propananol because I have POTS and it helps to control my heart rate. If I go from lying to standing my heart rate will raise from 70 to 110 and stay there or go higher but with 20 mg Propananol it will go to around 90 or a bit lower. I have been on this since 1995, originally 10 mg and then raised to 20 mg.
The issue regarding conversion of T4-T3 for me is that I have a genetic SNP that stops the enzyme from working correctly that is responsible for this conversion. This explains that when a GP wanted me to try just thyroxine several years ago I went very toxic on just 50 mcg but no T3. It made me very unwell and took a month for me to recover.
Therefore I have to work with the issues that I have and can really feel the difference of extra T3, its just it seems to me to feel better in the form of plain T3 added to a relatively small amount of T4. Many years ago I did try just T3 but it felt like something was missing as my legs felt weaker but responded once I added back just 25 mcg T4 so I definitely need both.
I also have had raised TPO and TbG antibodies in the past but last time they were tested they had come back into the normal range after I had been gluten free and used plant milks instead of dairy. I do still have a small amount of Greek yoghurt and Gouda cheese without any issues.
I should say I have got a diploma in Nutrition which is a passion of mine so I do take quite a few supplements and also work on my gut and microbiome which can also be an issue!
You already know you have low conversion from a genetic issue. Was this is why alternatives to Levo was introduced?
When you take levo only it’s important to see if the T4 is converting to adequate T3 levels. When FT4 levels are good eg 80% of range (nutrients are optimal) & FT3 is persistently low eg 20% then there’s a proven low conversion issue. Was this the case with you?
Once you introduce T3 externally (from either NDT or Lio) conversion isn’t reliant on your system. So the FT4 & FT3 comparison isn’t as relevant.
Doses need to be adjusted to where you feel well in range. The TSH almost always drops / becomes undetectable, so the TSH may look as if you are ‘over replaced’ and you may have symptoms initially but your FT4 & FT3 may settle to an acceptable level.
Most on levo manage well with FT4 in top 3rd of range & FT3 mid range.
Some only feel well if FT3 good in range and are not affected by low FT4.
What is your exact daily dose? You have referred to LT4, - NDT (natural T4 & T3) - & Bitiron (synthetic T4 & T3) Are you taking the same daily dose each day & allowing a new adjustment to completely settle?
It’s takes 8 weeks to fully know the outcome of a new adjustment.
You sound really knowledgeable about nutrition ect & you may be fully aware of all this & be making steady adjustment & fully testing in between, but I’m wondering if you are taking a mix of NDT & synthetic levo & lio and making alterations too quickly.
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