I received this text from my GP today [I called the surgery and have added in the ranges]:
“Just letting you know the results of your bloods.
Your T3 is the same - 4.3 [range 2.6 -5.7]
Your TSH remains very suppressed at <0.03 [range 0.35 - 4.94]
Your T4 has come down a bit - 7.4 compared with 8.7 [range 9 - 19]
To be honest, I am not sure what to suggest. Can you please confirm what dosages you are currently taking and I will make contact with the Endocrinologists for some advice”
Now.... the last NHS Endocrinologist I saw said I was hypErthyroid, even though I didn’t feel it (see previous post).
I was taking 25mcg T3 morning and evenings, and 75mcg T4 in the mornings for a year or more (maybe a few years).
The Endo told me to come off the T3 altogether 🙄 and asked my GP to increase the T4.
I had my doubts this would work for me, as 20+ years of mismanaged thyroid has left me trusting the collective opinion of this forum far more than that of NHS docs.
With this in mind, a few months ago I reduced the 25mcg evening dose of T3 by only 1/4 pill (6.25mcg) to 18.75mcg. Meanwhile, I continued to take the full 25mcg T3 with my new 100mcg dose of T4 in the mornings (I wanted to know how taking less T3 in the evenings would feel before I took less in the mornings too!).
That was a few months ago. Since then my chronic pain has increased by about 50% and my hair has begun to fall out. The hair loss could also be due to a change in contraceptive Pill to Yaz (US)/Eloine (UK) (for perimenopause symptoms), or an belated response to Long COVID a year ago. Either way I’ve never had it before and it’s really shocked me. As has the increase in pain.
Otherwise, weirdly - despite the above - overall I actually feel better on 18.75mcg than I did on a full 25mcg of evening T3. If I could get the pain and hair loss covered I would actually prefer to stay on this slight reduction of evening T3
Again, here are my NHS blood test results from last week:
T3 : 4.3 (range 2.6 -5.7)
T4: 7.4 (range 9 - 19)
TSH: 0.03 (range 0.35 - 4.94)
I know I could’ve done with all the vitamins and minerals, FT4 and FT3 being tested too, but that’s the test she gave me.
What would you guys suggest I put to my GP regarding the results above? I know the Endo she contacts will hardly be receptive to my self-medicating T3!
Many thanks 🤩
PS: Despite perimenopause symptoms for the past 3 years my GP won’t try me on HRT as I’m 44 1/2 (not 45 as per NICE guidelines). Instead, over that time we’ve been trying various contraceptive pills to manage my sore boobs, horrendous periods, etc. She still won’t let me try HRT.
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I mean... ...it’s hard to know where to start with this type of doctor-ignorance, isn’t it?
Your body just doesn’t seem to want the Levo, does it? Just dumps it straight back out again while clinging to the T3 you’re (thankfully) still giving it. But it’s not enough and of course you don’t feel well because you need more.
What are your nutrient levels like? Especially ferritin but also B12/Vit D/folate?
Edited to add - doh, sorry. Just read that they weren’t tested. Any previous results to share, just as a gauge?
Thanks for your reply Jazzw I’m so flipping fed up with it all! Isn’t it tiring having to be your own advocate all the time? It wouldn’t be so bad if any of the docs were accepting of T3, but it’s a fight from start to finish. And meanwhile we feel bloody awful. But thanks to the knowledgeable folk on here, at least over the past few years I’ve learned how to improve my own thyroid health 🙂
My last full vitamin levels were taken in June last year. I’ve been working on improving them since then -
Oh wow. That was a post and a half. Eek. Some “endocrinologists” really aren’t deserving of the title are they? Just awful. No wonder so many of us just end up going it alone. The problem though of course with going it alone is that eventually you fear what will happen when, as you approach more advanced years, the doctors insist on taking over...
Hey ho.
Sooo. B12 and folate were pretty low—have you stayed on top of supplements since then? And I couldn’t see a Vit D result?
SlowDragon thanks for your reply. Please see below:
Yes > Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Yes (I’m a pro at this thyroid testing lark, haha) > Last 1/3rd daily T3 dose 8-12 hours before test
Me too! Or at least I’d like to try. Question is how to get GP to prescribe more T4 to me (if that’s what you mean?) > Personally I wonder if you might be better off with MORE Ft4
How do I enable this? Many people on levothyroxine plus T3 need GOOD Ft4 and Ft3
Could this account for my hair loss and marked increase in chronic pain? Ft4 is below range
Years ago I had issues with TEVA (didn’t seem to work - at all) so I’m prescribed anything but that. My current brand is Almus > Which brand of levothyroxine are you currently taking
Good question. It’s either Almus or Mercury Pharma brand. But again, it’s never TEVA > Do you always get same brand
Yes. Was dairy-free for 4 years 20 years ago. Can tolerate it much better these days now my guts have completely healed from the gluten damage - not really intolerant except to cream - but don’t like dairy much anyway, so only have milk in tea. And chocolate. And my MIL’s desserts (she’s amazing at puddings!). Lactose is in my thyroid meds but this hasn’t affected me over the years as like I said, I’m loads better these days since my guts have fully recovered from years of gluten damage
Yes; strictly gluten-free for 20+ years. Makes me super-sick > Gluten intolerant?
Thank you so much for your input, as always. What would you suggest is my next move? I’m not feeling confident about my GP speaking to the local endocrinologist - especially as she reduced me to tears last time!
When I started on T3 - a good few years ago now - I was taking 75mcg T4. They’ve only increased the T4 to 100mcg in the last couple of months.
This is what my GP said; “To be honest, I am not sure what to suggest. Can you please confirm what dosages you are currently taking and I will make contact with the Endocrinologists for some advice”
I’m down south in Sussex. The endocrinologist - the only one I’m ever referred to (unless a locum is there) - made me cry last time, so I’m a bit scared of them! 😆 It was so upsetting I actually can’t face going through seeing them again. But it sounds like contacting them is the tack my GP will take since she’s flummoxed with what to do with me next.
If I increase to 125mcg T4 should I reduce T3 again?
I need to explain my motivation/ the next best step to my GP.
It’s exhausting being your own advocate, isn’t it?Thank goodness for you lovely lot!
Will the above improve my chronic pain again? I’m concerned dropping more T3 will increase it yet again; already it hasn’t been this bad since before I started taking T3.
Hi SlowDragon would you mind helping me word a reply to my GP? She’s just come back to me again today, obviously not getting it at all.So just a short paragraph or two that I could copy and paste suggesting the next step/s would be fab, if you’re able! She’s hellbent on forwarding my info to the Endocrinologist, who was a real ‘T4 Only’ type and made me cry the last time I saw her! So I need to stand my ground now - and sound like I know what I’m talking about. Ha! Many thanks 🤩
Many/most thyroid patients on levothyroxine plus T3 find they need Ft4 levels and Ft3 levels roughly 60% through range
You can see my Ft4 result is currently extremely low and now under range
I would like to trial increase in levothyroxine (Ft4) and a slight reduction in T3 to see if this improves the blood test results and reduction in my ongoing symptoms
So I propose a trial increase in levothyroxine of 25mcg from 100mcg to 125mcg daily
Currently taking 25mcg T3 and 18.25mcg = 43.25mcg per day
Proposed reduction in T3 to 37.5mcg total per day
(as 3 small doses of 12.5mcg T3 every 8 hours)
Retest in 6-8 weeks
Hopefully this will see an improvement in low Ft4 results and reduction in ongoing symptoms
Just to let you know I finally received a response from my GP.
Still can’t get used to receiving texts from doctors. It’s frustrating - but no surprise - that the majority of said texts don’t have a reply function!
She has now prescribed me 125mcg T4 Levothyroxine to take with my 18.75mcg T3 twice daily.
“Hi again,
I am happy for you to try this approach, although your T4 is always on the low side. I'll put the request through to repeat the tests in 6 weeks.”
What does she mean by “although your T4 is always on the low side” ??
Thank you for enabling the conversation above with your initial letter to my GP - I super-appreciate it. I wouldn’t have had a clue what to write to her otherwise - or how to state my case a) at all; b) with any authority.
Hopefully this new increase in T4 will improve my blood results in a couple of months time. I’ll keep you posted!
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...it’s hard to know where to start with this type of doctor-ignorance, isn’t it?
Blood results
Decreased levothyroxine over past year
blood test results
