I'm not new to hypothyroidism at all (was diagnosed at 16, I'm now 44) but I'm new to actually understanding what a huge impact it's been having in my life.
Have always been taking the exhaustion and lack of energy and weight gain as givens, and shrugged them off as my normality. But in the last couple of years, I've been a lot more aware of how unusual it actually is to feel/be like this all the time. Been desperately trying to get my GP (I'm in the UK) to take me seriously to no avail. All tests come back 'normal' and my 50mcg T4 dose hasn't been reviewed in over 15 years. Meanwhile, I've been completely depleted of energy and have gained a huge amount of weight. Six months ago I started to self-medicate and upped my dose slowly from 50mcg T4 to 100mcg. It's been a bit better but not hugely so despite the double dose. So I've now started self-medicating with extra T3 - 25mcg along the 100mcg T4.
Been taking T3 for four days and I feel much better already. Is that even possible? Has anyone else taking T3 experienced this immediate effect? How have you found it long term?
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PippiLongstockings
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I'm loath to say this, but you seem to have gone about adding T3 the wrong way.
If you started T3 four days ago and started with a dose of 25mcg, that is way too much and a shock to your body. T3 is quite a powerful active hormone and should be introduced low and increased gradually. We start with 6.25mcg and if all is well we can increase after 2 weeks by another 6.25mcg. Then we increase gradually and slowly, 6.25mcg at a time, so that we don't pass our sweet spot.
We also need to test TSH, FT4 and FT3 at the same time before starting T3. This is because TSH need to be down to 1 and FT4 as high as it can get, so that we can see how well (or not) we convert T4 to T3 which tells us if we need to add T3. It also tells us if we need to reduce Levo when adding T3.
Monitoring symptoms and test results whilst tweaking doses tells us how we need to alter the doses of both Levo and T3 if necessary.
Also essential for any thyroid hormone to work, and before adding T3, is to have optimal nutrient levels, so we also need to test
Vit D
B12
Folate
Ferritin
Low levels and deficiencies bring their own symptoms, often overlapping with symptoms of hypothyroidism, so it's necessary to check that and address any problems there before adding T3.
Members of the forum will be more than happy to help you, if you would like to post your test results, with reference ranges and (units of measurement for Vit D and B12) then members will comment.
Yes I agree with seaside Susie, I suggest you post your last results but discontinue the T3 until you have some advice. Despite T3 being short acting, it may take a few weeks for you to be able to tell much diffence - however it’s very unpleasant on too high a dose, you will regret it later if you don’t reduce it right down.
Hi, just to add my side of things which is slightly different (although this is purely my experience, and not based on any medical knowledge). I saw Dr S in Birmingham back in 2012, after a similar experience to you. I'd been on 250mcg levo for years but never really felt great and the penny dropped when I started doing more research.
Anyway, to cut a long story short, he started me on 20mcg of T3 per day from the start, and I felt the effects within about a week. It was a huge improvement.
For me, it didn't seem to cause any problems starting on this higher dose, and since then I've never been as bad again as I was just on levo alone. I went up to 60mcg per day, although now am back down to 40mcg per day, and that seems to suit me well.
Since then I've also found other things like Vitamin D and folate deficiency, which I'm now taking supplements for which have made things better.
Longer term, I've had some ups and downs, caused by a very stressful period, but I'm sure that would have been far worse without the T3.
As SeasideSusie has stated you've increased your dose too quickly.
I realise how desperate you must feel, with being on a starting dose of 50mcg of T4 for so many years.
Unfortunately for us, the medical professionals in general, regarding hypothyroidism, seem to have no idea about symptoms at all. They tell us we're on sufficient as bloods are 'normal' even though the TSH may be within the 'range' when, once diagnosed, the aim is a TSH of 1 or lower with a free T4 and Free T3 in the upper part of the ranges.
That's why there are so many on this forum, due to ineffective training of doctors who seem to think we're machines, not flesh and blood with distressing symptoms. What they fail to understand is that 'in range' is no use to us whatever - the TSH has to be 1 or lower and the Free T4 and Free T3 in the upper part of the ranges (the latter two rarely tested).
So, on this forum we have had to read, learn and ask questions.
I think you are unware altogether how strong 25mcg of liothyronine (T3) is and it is equal to approx 100mcg of levothyroxine, so instead of increasing gradually, i.e a quarter of T3 every two weeks you've increased far too quickly.
T3 is the Active thyroid hormone needed in all of our T3 receptor cells whilst T4 (levothyroxine) is inactive and has to convert to T3. Some of us cannot do so efficiently and remain symptomic.
Researchers have found that a combination of T4/T3 is best in a 3:1 or 4:1 basis.
Whatever we do has to be gradual but also all our vitamins/minerals also have to be optimum as deficiencies also give us symptoms.
Some advice re blood tests:-
1. Always get the very earliest blood test - even made weeks in advice.
2. It is also a fasting test but you can drink water.
3. Allow a gap of 24 hours between your last dose of levo and the test and take afterwards.
4. Always get a print-out of your results with the ranges - for your own records and you can post if you have a query.
The aim is to be symptom-free and sometimes that means trying options after you've given levothyroxine a long enough trial with gradual increases and of course you need a sympathetic and knowledgeable doctor - that can be difficult to find or even impossible in some areas.
It seems to me that instead of realising the person before him/her are in pain and expect the 'professionals' to at least have some knowledge, rarely they don't and the patient suffers longer than necessary.
Also the doctors are at a disadvantage as they are instructed what they should do and if they go out of this structure, they may be prosecuted.
Thank you all very much. I haven't got a copy of my lastest bloods from a few weeks ago but I'll get that and post it here. Your help is much appreciated.
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