Anyone in Bristol area on T3 only ?

I would love to know if anyone else in the area is doing this so I can reassure my self that I'm going about it the right way !

I'm on 62.5mcg in total. 25mcg at 3.30 am (I get up very early!), 25mcg at 11am and 12.5mcg at 7pm. My temps are around the 35.6 mark and haven't budged throughout. My pulse is usually around 82 and nothing has really changed one way or another. Still overweight, still full of aches and pains etc, etc....

I don;t apparently convert, hence the reason for T3 in the first place and have been on T3 only for about a month.

It would be so good if I could find an endo who approves of this route in my area. Mine agreed to a trial of 20mcg with my T4 years ago - but then signed me off so I've been flailing around ever since !

I know of an endo that Clarebear mentioned who is open to armour - but how does he feel about T3 ?

Thanks for any advice..

Sharon x

12 Replies

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  • Hi Sharon

    I'm in Bristol too, and 8 weeks into 100% T3 (I tried NDT first but did not do well on that). I've been following Paul R's approach on this. I'm currently on 27.5 @ 4.00 ; 22.5 @ 9.00 ; 18@ 2.00 and 12 .5 @ 6.30. I'm not there with it yet as I'm still tired in the morning, and low temps/ heart rate during the day - I suspect low cortisol has something to do with this (or else something else is not sorted!).

    I've recently swapped GP practise and met with my new GP last week. He is sympathetic to me wanting to sort myself out, but will not prescribe T3 on the NHS unless OK'd by an endo. So I have a referral to an endo of my choice. I'm currently hunting around for a known T3 friendly one!

    If I find out anything, then I'll let you know. Am currently thinking of travelling to Lemington to see Doctor. If there is anyone local then that would be better

    Sue

  • Meant to say ... Leamington Spa to see a doctor.

    edited by Admin - removed doctor's name.

  • Thanks Sue-sounds as if we are on a similar quest. Would you say you are much better off by being on T3 ?

    The thing I find most confusing, is how you know what isn't working. Do you just keep adding more T3 until things start happening.? I had the adrenal saliva test done (along with most of the other recommended tests) prior to starting- and have supported them throughout - but like you, it concerns me that my adrenals may still be holding me back somehow.

    Anyway, I too will let you know if I hear of a "friendly" endo!

    Sharon x

  • I have a similar story to you Sharon, I too am on T3 only because apparently I don't convert. I take roughly the same dose as you, with the same low body temperature, and still am tired. I haven't had a recent Adrenal test, due to the cost, but a couple of years a go they were hot very healthy. Things have moved on and my stress is less, but I suspect the adrenals are still causing the problem. Let me know if you solve the riddle?

    Good luck

    Margo x

  • Hi Sharon

    I don't know if I am better off yet in all respects. I am very up and down but I feel it is early days as I've only been on 100% T3 for 8 weeks. 2 weeks ago I was feeling fantastic and had started to tell everyone how well I was feeling - then I came down with a stomach bug which lasted a week, and I haven't got back to how I was two weeks ago.

    But I am optimistic that T3 is the answer for me. I've had moments/ periods of feeling really good on it - most noticeable in me "head" as I get tired in my head and just can't think/ make decisions/ do anything, and feel flat. When the T3 is working that lifts and I can just get on with things much more easier and feel happier/ more peaceful. I can feel the effects of the T3 wearing off when I need another dose.

    The other difference with the T3 is that I have much more energy into the evenings now to get with things. On T4 I was crashing late afternoon and could not get on with anything for the rest of the day.

    I take lots of temps/ HR and BP - my temps are all over the place. I'm sure I have not been over T3'd though as I haven't had heart rates above the 70s, not been overly hot with shaky hands.

    This last couple of weeks I've felt very tired / anxious at times - I can't work out if that is lack of T3 or something to do with adrenals! I think it's only when you feel much better/ have a good spell that you then realise it's not working when you feel "off".

    Am also trying to sort out lowish iron and Candida - so that may be having an impact

    So I don't think I've answered your Q of how you know what isn't working!! It is confusing - because for me, it could be adrenals (likely), or low iron, or candida - or something else I don't know about yet. It could be that T3 is just still too low. I understand doses of 100mg are not uncommon.

    I made a small increase to the first dose this morning - and that had an effect of me being wide awake and raring to get on with things at 6.00am! I've felt good all morning until just now - so I don't know if that is lack of T3 or having had too much!!

    I don't seem to stablise from day-to-day either on the same dose to really get a grip with what is going on. But having said all that, I still believe it is the way to go - and if the T3 is not working maybe it is highlighting that there are other things that do have to be sorted out in our bodies irrespective of the thyroid hormone.

    Sue

  • The other thing with the adrenals is that CT3M (early morning dose) should help the adrenals/ cortisol levels. So hopefully cortisol levels will improve with these early morning wake-up calls.

    I was initially leaving my second dose to late morning and struggling after the first dose had worn off. I then realised that I needed a second dose about 9.00-9.30 - and I think that has helped me as we still produce quite a bit of cortisol in the morning, so at least the second dose T3 is there to support that. I then had to go to 4 doses with taking the second dose to 9.00 - 9.30. It depends how you are feeling for timing of doses. Apparently as cortisol levels improve then the gap between doses should increase ie can last longer.

    Sue

  • Will do, Margo...so confusing, isn't it ?

    Sharon x

  • It's taken 6 months for T3 to make a difference to me so that may reassure you all! Currently taking 87mcg but may need to go a little higher.

    I'm in Wiltshire and currently waiting to see an Endo so I can get this on the NHS.

  • CG - See response from Sharon below...!

    Louise

    x :-)

  • Hi Cinnamon Girl, yes that does reassure me!

    Did it only start making a difference once you hit that level or have you been aware of improvements throughout ? I honestly haven't noticed any change at all to date - but your response makes me think it is worth persevering...

    I'm going to take on board your comments too, SueDa - and split my dosing into four to help me get through the day. That may at least stop the overwhelming fatigue I feel around 3pm.

    Thanks you both..

    Sharon x

  • Hi Sharon

    Just a pointer, if you want to reply to someone in particular, you have to make sure to click on 'reply to this' otherwise they will not get an email letting them know that you have responded.

    Louise

    xx

  • Hi Sharon. I was taking it for a few months, slowly increasing dosage but felt quite rough. I then reduced, bought Isocort for adrenals and took that for around 6 weeks or so. Again gradually increased dosage, did try CT3M but setting the alarm early meant that I wasn't getting back to sleep. Now take when I wake up.

    By increasing I mean every 7-10 days, just giving it time to allow my body to adjust and be kickstarted. I now take it 3 times a day.

    It may be trial and error to work out how much you need to take and at what time. Possibly could be worth trying a dose mid-afternoon instead of 7 pm or even moving forward your mid-morning dose to, say, 9.30/10 am.

    Remember, if you've been ill for a while then it will take a while to recover! T3 is strong stuff and needs careful handling.

    I am still suffering with swollen feet, ankles and fingers though. Losing the brain fog was brilliant!!

    Good luck and keep us posted!

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