First of all, thanks to everybody who posts on here - your advice and information has been truly invaluable.
As a bit of background, I was diagnosed with Hashis just over two years ago, with TSH >200, T4 5< and TPOAB >2000. I was started on Levothyroxine and ended up on a dose of 150 mcg. Although more awake, I couldn't get rid of the fog and feeling of being overwhelmed that had plagued me since severely hypo.
After a visit to the endo, I was given 20mcg T3 to add to 100mcg of Levo, and told I could 'play' with the ratio to 30mcg T3 and 75mcg T4 - whatever I found best. This still seemed to do nothing so, after reading Paul Robinson's book, I decided to try taking mainly T3, with only a sliver of T4.
Fast forward 3 months, and I'm now taking 185mcg of T3 daily, with a tiny amount of Levo. I split this into 4 day time T3 doses (37.5, 25, 37,5, 25 of Turkish Tiromel) and a night time dose of 60mcg T3 (Mercury Pharma) plus 12.5mcg Wockhardt T4. I still don't feel entirely there, although this is the biggest lift in the fog and overwhelmed feelings since starting medication.
I've got bloods to get done on Monday (the first since starting this medication regime) and then the Endo on 18th June. I'm expecting a large amount of resistance if not anger at this high dose.
So that I am prepared, I wanted to ask if anybody has any experience of being prescribed such a high dose of T3 by their Endo?
Or if anybody was on such a high dose and discovered another medical problem that was the reason behind needing so much T3?
Thanks in advance for any replies,
Nicola.
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f1ying_swallow
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Endos will only prescribe a maximum of 60mcg so be prepared for a lecture about osteoporosis etc.
I take T3 only, for the last couple of months it's been Turkish Tiromel and prior to that it was Mexican. Don't know if it's a coincidence but my health has deteriorated since I started on the Tiromel.
From my own experience with a NHS Endo, he didn't even bother to check to see if there was anything else going on and was more interested in getting me to reduce from a 'large' dose.
Sorry, not much help but many of us have found that we need to manage our expectations with the NHS!
Nicola, there are a few members taking high dose T3 but I don't know whether they are self medicating or prescribed.
A build up of T4 or rT3 can stop T3 entering the receptors. I didn't feel any different on 60mcg T3 or 120mcg T3 and certainly wasn't overstimulated. According to Paul Robinson it can take up to 14 weeks after stopping T4, taking T3 only, for rT3 to clear. It took 8 weeks off T4 and, 2 weeks off T3 too, for me to clear T4 and I was then able to recover on T4+T3.
Resistance to thyroid hormone (RTH) may be why people are able to take high doses of T3 without feeling overstimulated. Not sure our diabetes expert endos will be clued up on RTH so you may want to do some research. Sandy12 is very knowledgeable on RTH. Check out his posts.
If the results are available prior to your endo appointment post them with the lab ref ranges and members will comment.
I've taken up to 225 mcg T3, self-medicating, without feeling anything at all! I didn't feel over-stimulated, and I didn't feel well, just generally horrible and getting worse. Before that I'd tried T4 only, T4 + T3, and all the different brands of NDT (except Thyroid S). I felt my worse on NDT.
Then I had bloods done and found that I was vertually starving to death - never had much appetite, but with low absorbtion from being hypo all my nutrients I could manage to get tested were low. So, I assumed the others were, too. I started researching suppléments and taking the amounts I felt necessary to help my deficiencies. I also started taking a little HC for my adrenals. I now only need to take 75 mcg T3, and I'm getting better all the time. I take it all in one go at bedtime, I find that's better for me than splitting doses. Even with 225 I took it all at once! And not a flutter!!!
You probably know that if your nutrients and cortisol are low, you can't convert correctly. But it would also seem that you can't use the T3 correctly if nutrients and cortisol are low. In any case, the very fact that they are low will give you symptoms and make you feel bad.
I'm not saying this approach will work for everybody, but it certainly worked for me. I've gone from more or less bed-ridden to being able to function reasonably and lost over 50 kilos. I would say it's Worth a try. Oh, and also, on large doses of thyroid hormone replacement, you will probably have too low cholesterol. I know I did. You need cholesterol to make hormones, so things like testosterone will also be low, and that will make things even worse.
Dr Skinner says in his book, that he had one patient named Elizabeth, who had over 500mcg of T3 a day, to feel well. It's about the individual - what suits you may not suit anyone else, but it it suits you then so be it.
When I had high (over the range) reverse T3 and very low iron, I ended up taking 200mcg of T3 (Tiromel) for a while.
An awful lot of testing and experimenting with thyroid meds has gone on between then and now. I no longer have high reverse T3. The last time I had it tested it was just over mid-range - still too high for my liking, but a massive improvement.
I no longer have low iron and all the nutrients I've had tested are now at optimal levels. (I've never had zinc, copper, selenium and iodine tested, so they might be non-optimal.) I'm currently taking 31.25mcg T3 per day and am still slowly raising by 6.25mcg (quarter of a tablet) at a time - I think I am very, very close to my ideal dose. Compared to how I felt with high reverse T3 and low nutrient levels I feel a whole lot better, but there is still improvement to be made.
So sorry for the late response and thank you for all of the replies.
Felt oddly jittery on the morning of having bloods done last week and then came down with a stomach bug that completely floored me. I'm only just feeling like I'm getting over it now.
Lots of interesting information there for me to look into, thank you. I currently am taking ferrous sulphate prescribed by my GP as my iron keeps dipping below range without it. Last tested, it was 55. I also take 5000mcg B12 daily and 5000iu Vitamin D3. Also just added Magnesium Malate to this but I'm taking stabs in the dark with nutrients as I've never had any tests.
Just picked up a printout of bloods today and I'm at:
TSH: *<0.01 (0.35-5.00)
Free T4: 5.9 (9.0-21.0)
Total T3: 10.4 (0.9-2.5)
Not sure why they would do Total T3 instead of FT3 but that's labs for you.
My doctor has put a note on that she's seen its irregular but will leave me be as I have the Endo appointment next week!
F1ying_Swallow, brace yourself to be told you are overmedicated. TSH is suppressed which is to be expected on T3 but TT3 is more than 4 x over range which is likely to alarm your endo.
My TSH has been that reading for the past year and my GP has been happy enough with that. She is very good and reasonably pro-T3 but is bound by the Endo.
What I would like to know from the Endo is why I have no racing heart or palpitations then...? They want to tell me I'm over medicated yet if they had no blood test, they would see so physical signs.
I have got up to 50mcg of T3 before feeling it was causing muscle twitches in the hand. Didn't feel quite right at that level and dropped back to 35 eventually. the meds I get are only a few months life -so maybe the foreign produced are not so high potency as NHS stocks -which certainly are not cheap, at £185 /month for 20mcg a day!!
I'm actually going to try taking larger chunks of T3 later in the day, though this is counter intuitive for a 'daytime' hormone. I still seem to drop off very early in the day even after taking T3. It seems not to be the booster that is claimed- others have said this too, on line here and there.
The other thing I found was to drop the dose on the day of testing- whereas prev my FT3 was 10 it had later dropped to 7 -after the early morning half dose on the test day. Same average dose level.
The half life of T3 is around 24 hours but varies between people.
These two points may have affected your [OP] response. The max dose for Lio is 60mcg as stated earlier but I'ver seen comment on the protocol for clearing RT3 as going up to 160mcg.
I'm uncertain abouit the Osteo risk on T3- it's a possiblity but not affected me yet. I wouldn't go near that dose,tbh.
I was surprised to find recently that T3 reduces all tissue quantity in the frame- muscle , fat as well as bone so one reason why Endos are wary [maybe] and only very short term high dose considered anywhere near ok.
Self medicators are brave, but are taking a real risk, as hormones can bite back when unbalanced and the adrenals and support nutrients are needed to minimise further knock on effects beyond the need to kick start the system- as in Wilson's Temp.Syndrome whicjh I feel is my case.
Hashis is a different case altogether, to my mind and needs more careful management, due to the autoimmune nature having multi kickback potential.
I hope these comments help light of further comment as this thread never really resolved in place.
Hi I'm on a high dose 260mcg t3 and 300mcg thyroid gold it concerns me the amount I'm taking mostly self medicating but if I miss a dose my heart starts to thump like crazy like it wants its fix of t3
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