Following on from my previous post where I was delighted to have been given an NHS prescription for T3, I've just had the results of my blood test seven weeks after starting it.
Previously, I was on 75mcg of T4 and those results (Oct 2020) were:
TSH 1.43 (0.27-4.2)
FT4 19 (12-22)
FT3 4.6 (3.1-6.8)
My endocrinologist kept my levo dose at 75mcg and added 2 x 5cmg Lio per day.
Today's results:
TSH 1.34 (0.35-5)
FT4 12.6 (9-21)
TOTAL T3 1.5 (0.9-2.5)
I think the Total T3 rather than Free T3 is because I'm in Scotland - seems to be the 'norm' here. I don't know how to interpret this one.
Since starting on T3 I am very sorry to say I really haven't seen much at all, if anything, in the way of symptom improvement. In fact it's pretty much a year since I found out I have Hashi's and started treatment, and I really haven't got any better. I'm so, so tired, I ache, my joints hurt, my feet are freezing, my mood is low, I can't do any form of exercise (by which I just mean some housework or a short walk) without being completely wiped out for hours or sometimes days. I read so many stories of people making miraculous recoveries on T3 and I've been quite down about how bad I'm still feeling - in fact I'm almost starting to 'gaslight' myself, I think, and wonder if somehow this is all in my head!
Since my last post I have also had the results of a DIO2 gene test from Regenerus, which shows that I am positive for the gene variant (heterozygous).
Thank you if you've read this far and I would greatly appreciate some support or advice on how to proceed from here - in the hope that somehow, someday, feeling 'well' is still a possibility 🙂
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Smorzando
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Reading your helpful profile can see vitamin levels are optimal
Total T3 is pretty useless test
Probably need to get TSH, Ft4 and Ft3 tested via Monitor My Health
£26.10 if use Thyroid U.K. code
Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
I am mainly posting for moral support - listen to wiser minds than mine!
So, with that caveat, I think T3 can still be the bomb you are looking for - I think you are under medicated. The orthodox thinking here is that you should feel better with T4 and T3 higher through the range. If these were my test results, knowing that I feel better with more T4, I’d want to ask the endo to increase that by 25 mcg and see where it took me...
I too am on an NHS T3 trial and am currently struggling because they cut my T4 too much to add T3. I am permanently exhausted after 3 weeks and need to get through another 3 before we can test, so I guess I wanted to say that I share your pain and I know how hard it is to be patient and not to doubt yourself. It’s not in your head! It’s quite plainly in the numbers!
Thank you so much Lotika - moral support is very much welcomed! I'm sorry to hear you're also in the boat of not yet feeling any improvement and hope you can get through the next three weeks. It feels like an eternity doesn't it.I agree that the results certainly suggest I'm undermedicated, so in that sense it's quite positive, as it 'validates' how I'm feeling! - and also that there is probably something I can do about it (dose increase!)
I'm going to try and get in touch with my endo to see what she suggests but I'm pretty sure she won't have an issue with an increase'; she's already said to me she likes to see T4 and T3 at the top of their ranges 🙂
Stopped my B complex just over a week before the test, yes.Levo is Mercury Pharma (3x 25mcg tabs) and Lio is Morningside.
Interestingly (possibly?) is that the October results on 75mcg levo were on Teva. I wonder if I'm just an oddball who seems to absorb Teva better? I didn't notice any side effects from that or any other brand (I've also had Almus) - but then again, I didn't feel any better at that time.
Yes, I am pretty sure I'm mildly lactose intolerant. Or at least I used to be. I still have milk in my tea, but do better on dairy free milk in cereal etc. Although I did notice last year that my FT4 results on Almus 100mcg were higher than on 50mcg Almus plus 2 x 25mcg MP. There are too many variables to keep track of, sometimes, not to mention having Hashi's will probably make things rather unstable!
Thanks SlowDragon, I'll suggest that to the endo when I speak to her 🙂
I don't suppose you happen to know if Teva T3 is any more expensive than the other brands? I'm painfully aware of the cost to the NHS and that this may be a factor in what I'm prescribed.
The Total T3 test isn't helpful, this measures T3 which is both bound to proteins and unbound (free) and doesn't differentiate. It's the free T3 that tells us what is available to the cells so that's the test that tells us what we need to know.
I would have expected to see a drop in your TSH, but having already had a suppressed TSH when I started adding T3 to my Levo I really have no idea how quickly or by how much it would change.
Your FT4 has gone from 70% through range to 30% through range, and even though we expect to see FT4 reduce when adding T3 that does seem quite a drastic drop. I don't know if there is some Hashi's activity going on which means you are going through a hypo phase which may have meant your TSH didn't decrease much and may account for the rather drastic reduction in FT4. I'm not saying this is what's happened, just chewing something over in my mind - I don't have Hashi's so am not exprienced in how things change.
When I added T3 I didn't actually feel anything. Some people have a eureka moment, feel fabulous straight away but for me it was a case of nothing much happened except that somewhere down the line I realised I didn't feel as bad as I did before. It took many, many, many months of tweaking doses of T3 and Levo to find what doses gave me the levels of FT4 and FT3 where I felt was right for me. I couldn't function with such a low FT4 as yours, I need both FT4 and FT3 fairly well balanced at around 70% through range, others do very well with a low FT4 as long as FT3 is good. It can be a long, frustrating journey.
If I were you I'd do another private test and get TSH, FT4 and FT3 done, it will be much more useful that the Total T3 test.
Hi SeasideSusie, thank you for your reply. Yes, nutrients pretty good I think - still continuing to supplement - most recent results are in my profile.I had anticipated a slight drop in FT4 but certainly not this much! Perhaps that's a big factor in why I'm feeling so bad, still. I didn't feel well even when my T4 was up at the top of the range, either, but FT3 was low as I don't convert well.
It's interesting to hear your experience of adding T3. I know this is 'a marathon not a sprint' (as someone said recently!) so I guess I'm still early days in dose tweaking. Taking the T3, I expected to feel 'something' - some people get jittery, or wired, or anxious; but no - nothing, really. Perhaps, oddly, a very faint sense of calm, if anything! and I have been sleeping solidly, although still waking up feeling like i've been hit by a bus 🙁
Haha, yes me too!Oh dear - so maybe I'm just going to have to live with the 'hit by a bus' feeling then - I guess if it didn't linger throughout the day that would be an improvement!
Without FT3 tested both times, you cannot compare/decide anything. Always test TSH-FT3-FT4 together. FT3 determines your energy level among other things.
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