Since seeing my endo 6/7 months ago I’ve been gradually increasing T3 myself. I’ve gone from 10mcg +125 levo to 40mcg + 150 levo just recently. I plan to do bloods in a week or so.
However my gp called today to ask why I had been asking for a new px every three weeks. I explained I had been titrating up the T3 from the initial script of 10mcg per day in order to become asymptomatic. He plans to email my endo to ask if this was the plan..... which of course it wasn’t. Not that it specifically wasn’t, but I have taken it on my own head with help from here.
So, now I feel I have to get in touch with the (private) endo and explain myself.
My question is why? WHY am I needing to increase every 5/6 weeks? Initially I felt fab, really great but with lingering frozen shoulder and a few other minor bits. But, the effect wore off. Each increase has helped. But as I sit here now my arms ache holding them up to the keyboard.
Why is this happening? My vits and mins are good now (though I plan on checking next bloods) so why does the muscle weakness in particular keep recurring?
I’ve read about thyroid resistance and it doesn’t fit but I can’t explain it. Do I need NDT?
I need a plan or some idea of what my endo might say when I speak to her - I’m terrified she’ll tell me to reduce my dose. I tried once and thought I was dying after three days!
Any advice welcome, thank you 😊
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Murphysmum
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The following was by Dr John Lowe - an expert on Thyroid Hormone Resistance. He himself had Thyroid Hormone Resistance and took 150 mcg in one dose daily (in the middle of the night).
Sorry I don’t know about THR either but sending a big hug as it’s a nightmare...
The only thing I can add is what is your vit d level like? The only thing that has made any difference to me other than thyroid hormone is getting my level over 105. 😊
You've asked me to comment on this post. I'm afraid I don't know anything about THR and I've no idea why you're having no lasting improvement from a dose increase.
Maybe you're one of those hypo patients who need T3 only, I don't know.
Have you tested adrenals, sex hormones? They're all connected and I had to work through a lot of things as well as address my poor conversion.
I don't know if NDT will be any better. It's still T4 plus T3 but in a fixed ratio whereas with Levo plus T3 you can tweak the ratio to suit your needs. The only difference is that the thyroid hormone in NDT is from pigs rather than synthetic, but to make the tablets then synthetic excipients are used.
Tbh, from the little I’ve read about THR, I don’t think it’s my issue but I’m just looking for some explanation!
My sex hormones (well estrogen and progesterone) were checked a couple of years ago but I do wonder about testosterone.
Adrenals were a bit out of whack initially but recovered quite quickly once a period of extreme stress was over and I took time to relax.
I’m certain now my T3 is over range and whilst I appreciate that maybe this is what I need and ranges can be ignored, I don’t feel any better consistently and I know with my suppressed TSH the endo won’t be happy.
I don't have a medical diagnosis for Resistance to Thyroid Hormone (RTH) but after researching my health issues for over 2 years and titrating T4, T4/T3 and finally T3-only it is the only conclusion I can come to.
I became very ill about 2 years ago after decades of slowly declining health.....I now think that decline was the consequence of slowly reducing levels of T3 in my cells.
I also have the Dio2 mutation/homozygous which impairs T4 to T3 conversion.
T3-only is the last resort after other titrations have failed...it took me a year to reach that stage.
It may be at this stage that you are overmedicated with Levo.
Do you know if you adequately convert....a high FT4 and low Ft3 lab result indicates this.
40mcgT3 plus 125 levo is a hefty dose
You raised 30mcg in 6/7 months which on T3 only would be reasonable
I'm not a medic but I would have been inclined to reduce the levo as I increased the T3. Personally I suspect, it is the levo that is your problem.
I concluded that my problem was RTH after I started T3 -only and found that I could tolerate a supraphysiological dose (currently 125mcg) , one that would hugely overmedicate someone without the condition. My symptoms then started to improve but I haven't yet reached the therapeutic window.
Sadly it's all a case of trial and error once you introduce T3 and the only lab result of significance becomes FT3. It's impossible to say what dose is ideal for the individual.
I would be inclined to ask your endo if he will work with you to trial a reduction in Levo....though I guess he will baulk at a dose of 40mcg.
Which dose did you reduce T3 or levo?
I guess when we increase a dose our cells do a jump for joy, then they realise they are still not getting enough and they signal that by returning symptoms....more hormone please is the message.
I self medicated from the point when I introduced T3 so had no debates with medics about my protocol. I had a couple of brief meetings with an endo who basically hadn't a clue....I think he was a diabetic consultant! His conclusion,....it seems to be working so just maintain the status quo, but that wouldn't be my advice. He knew I wasn't going to budge!
If you suspect RTH then I highly recommend this ebook
It is available on Amazon for £3.56 or free if you have Amazon Prime. It is called "Impaired Sensitivity to Thyroid Hormone (Thyroid Hormone Resistance)" by Hugh A Hamilton.
It is full of easy to read referenced information.
Sorry this is a bit of a rant...hope something is useful.
I have a feeling I’ve read that book but I’ll reread taking into account my circumstances now.
Can I ask what your bloods look like on that dose? My FT3 was top of range last time on a lower dose than now. Surely I’d it were resistance, it wouldn’t look like that?
I am a poor converter though I’ve never done the gene test.
My FT3 lab result last month was hugely over range....can't remember numbers off hand.
The test measures the serum hormone (T3) level but with RTH much of that T3 doesn't actually reach cellular level by way of the T3 receptions (not responsive) where it is required. The excess is then eliminated via bladder and bowels.
I have a lot of T3 sloshing round in my blood but only a fraction of that amount is utilised by the cells....cellular level is important but cannot be measured. It all depends on how we feel.
I found when I returned to Hugh's book I picked up on things I'd overlooked/not understood earlier.
A genetic test isn't necessary to identify poor conversion but a positive result can help persuade endos that you have a clinical need for T3.
My dose still isn't optimal but most of my symptoms have improved or gone away.
Fatigue is still a problem....but I forget that I'm 74!
Glad your are investigating now....my problems started 50 years ago with eventual diagnoses of Fibro and CFS/ME..
Shaws has mentioned this with ref to Dr John Lowe...and some good links
I hope you have an understanding endo....keep us posted
Best...
DD
PS....sorry I wrote 150mcg for dose it should have been 125mcg! Grrrr!
As I said, my last bloods showed my T3 top of range so I fully expect it this time to be over. I have increased levo around 4 weeks ago but now I feel over medicated, so this hasn’t worked for me. Overmedicated but still with muscle weakness, jelly legs, problems focussing etc.
I re read Hughs book last night, and I agree with you that there are things in there that ring true now having tried T3. But my TSH has always been very suppressed, hence my questioning yours. That doesn’t fit with the theories in the book.
But I do feel as if I need more. Each time I increase, I feel better. Everything goes away but the length of time that lasts seems to be decreasing compared to when I first took T3 six months ago.
I may well have missed a sweet spot and increased too much too soon as SlowDragon said above. I have never felt “over”. I do feel that way now but I’m more than certain that’s because it’s my T4 that’s too high and it’s not going anywhere. It’s exactly how I felt before on a higher dose.
I will need to go back and see my endo to explain, if only to try to keep my nhs prescription!
For reference I am 43 now and started having problems two years ago after a period of extreme stress. Prior to that I had been happily on levo for around 15 years. I suspect now though that my T3 may have been decreasing all that time. Who knows?
My TSH is undetectable...it is irrelevant once T3 is introduced. FT3 is the important test....until or unless you have RTH when serum levels rise and symptoms become your guide. There are no tests as far as I know to check cellular levels of T3....sod's law!!
TSH is not a thyroid hormone but one sent to the thyroid by the pituitary gland when it detects that the thyroid needs to produce more T4...the feed back loop that medics still cling to
Medics are wrongly wedded to the importance of TSH...Diogenes et al have published relevant work.
As I said above I suspect your T4 is the problem and needs to be reduced or maybe even dropped....trial and error is the only way forward in that case.
With luck a levo reduction may resolve your problem.
Like you I suspect my cellular T3 has-been dropping for decades...I now suspect my maternal grandmother had a similar problem and that I have an inherited genetic element beyond the Dio2 mutation.
I too was on levo for nearly 20 years but never felt well (and hadn't done so since the age of 30) but medics were clueless and I plodded on until my early seventies by which time I could barely function.
I've just asked my surgery for copies of all my thyroid test results since 2000 when I was diagnosed....I'm looking for any patterns that might emerge.
If you wish you can read my thyroid journey timeline in my profile.....something there may resonate.
It's good that you have an NHS prescription.
Apologies if I'm telling you things you already know.... this rant seems to be all about me,
I hope my experience helps even a little. I'm sure other members will have additional advice to offer.
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