Update on my T3 journey

[Frumpty]

Hello all,

Sorry for not updating before now...think when you are feeling better you don't tend to focus on how ill you've been!

For those who don't know, I managed to get T3 prescribed about 3 months ago. Taking it wasn't easy, as I had horrid palps and anxious...that lasted for a few days until some kind souls on here reassured me and I realised my poor body was just not used to having any T3!

After increasing slowly around every 2 to 3 weeks, I now take Liothyronine (T3) 10mcg in the morning, 5mcg at lunch time and 5mcg late afternoon/early evening. This was a bit of trial and error to get to this. I also take Levothyroxine 150mcg in the morning as well.

Had an endo apt this afternoon, where my TSH was 0.5, T4 around 12 and T3 around 6...sorry for being so vague but poor endo couldn't get results to print off.

I feel really well. I have energy, aches and pain have gone, can think clearly (and quickly), I've lost 9 lbs (am trying to lose, on a reduced carb diet, but previously couldn't get any weight to budge) I'm sleeping well, waking up feeling refreshed, my eyebrows are growing back, my nails are growing and my blood pressure has dropped 10 points, although pulse is a little high.

The endo told me there are some concerns about getting osteoporosis in the future with long term T3 use...I told him I would trade a possible outcome for the definite one of being able to function. He has kept me on the T3, and I go back again in 6 months for another blood test.

There is light at the end of the tunnel, and the sooner the NHS sorts out it's contracting arrangements with phara companies the better...anyone who would do better on a combination of meds should be able to get them...not just a few of us who have some strength to battle the system.

Take care all

Frumps

[Babette]

Hi Frumpty,

I'm on T3 only and had the same conversation with my endo last year. He also thew in possibly developing heart problems. Before I went onto T3 I was in chronic pain, which I've since discovered was partly caused by levothyroxine, and fatigue, struggled to work and had no quality of life. My own personal view (and others may disagree) is that I don't want to spend the next 40+ years life that. I might be run over by a bus before heart problems and osteoporosis develop - if they ever do.

Bx

[puncturedbicycle in reply to Babette]

As far as I'm aware, you're at higher risk of osteoporosis and heart issues only if your tsh is suppressed, and even then I don't think the effects are dramatic. I'll see if I can find the study I'm thinking of.

[Frumpty in reply to puncturedbicycle]

Hi there, Not being able to function vs a hypothetical problem just doesn't stack up for me...surely if I'm able to exercise and keep fit that's better for me in the long run. Interested to see any studies : )

[puncturedbicycle in reply to Frumpty]

Just to clarify, I'm on your side. I too am taking t3 and I too believe we have to do the best we can with what we have, so I'm not saying you shouldn't be taking t3, I'm just saying I believe there is some research that indicates some risk but only under some conditions. I'm still trying to find where I need to be to feel well but if I find it and it means my tsh is suppressed I think I'd take whatever risk(s) that represents.

When I was well on t3/t4 combo I was running six miles a day. I'd rather be doing that than lying on the sofa any day.

Here is the study I was thinking of: ncbi.nlm.nih.gov/pubmed/269...

And here is the thread I posted it on with some related info and studies: healthunlocked.com/thyroidu...

[Frumpty in reply to Babette]

Hi B

I agree, the current protocol is purely for financial reasons, not patient care. Glad you're doing better...long may it continue

: )

[Clutter]

Frumpty,

These 20 and 17 year Liothyronine safety reviews don't find increased incidences of osteoporosis.

endocrine-abstracts.org/ea/...

ncbi.nlm.nih.gov/pubmed/269...

[Frumpty in reply to Clutter]

Wow, thanks Clutter...really interesting. I am truly appalled at the lengths they go to in trying to manipulate us to a medication that keeps people sick. The endo I saw this time asked me where I got my t3 and how much it cost...he didn't realise his colleague had prescribed...nice he bothered to read my file!

Take care : )