Finally got my T3

[Revsie]

A very Happy New Year to everyone first of all.

Well I've managed to get the endo to try me on a course of T3 only, but it was like squeezing blood from a stone to be given this medication! When I look back at the amount of perseverance needed to get this far it's just ridiculous that any of us have to go through so much to be given the opportunity to see if this form of treatment will make us feel any better!

Anyway, I've been taking 40mcg of Liothyronine (no T4) now since 5th November and I hate to say it but for me it's not made a massive difference. My weight has gone down a few pounds and seems to stabilise at about 10st 5lbs instead of it's past high of 10st 10lbs (I'm only 5' 3" so neither of these is good for me really but I'll take 10.5 if I have to!) Also I don't know if I'm imagining it but my eye bags seem to have reduced slightly, which indicates to me that the fluid build up around my eyes has decreased even if only by a minimal amount? My endo has put me forward for the traditional 'chronic fatigue clinic' session (as your average endo seems to do?) but I'll play the game and happily go there as she says they'll test my vitamin levels etc (which was going to be my next concentrated effort on the road to wellness). I truly believe that we need to get our vitamin and mineral levels up and am reading as much as I can about this subject and trying to get it all worked out in my poorly functioning brain. I'm therefore very happy to go along to any clinic they send me to as long as I get more information about the levels of everything going on in my body and then use that information to help me get my body in tune with itself. No-one but me knows how I feel inside, so I just wish my GP and endo would take note of my symptoms and work with me instead of being annoyed that I don't say I'm ok when they fail to give me the correct medication or tests? I'm just a simple person of average intelligence and they are so knowledgable and have the ability to work wonders, but their arrogance and ignorance of the facts when treating hypothyroidism astounds me!

I'm toying with the idea of adding some T4 back in alongside the T3 OR maybe upping my T3 and would welcome any comments in doing that if anyone could offer me advice on that score?

[debjs]

I am pondering the same thing. Been on T3 only since beginning Oct with gradual changeover from Armour. Now on 40mcg and told euthyroid so don't need more. Symptoms creeping back (never completely went but much better on T3 only) but wondering whether to increase T3 or add some Armour back though think I definitely have problems with T4. Will be interested to see what advice others give you. Sorry I can't help but seem to be travelling the same road.

[Revsie in reply to debjs]

Hi debjs

It's good that we both seem to be on the same path as it's interesting to compare our journeys and maybe fine tune our ideas?

[debjs in reply to Revsie]

Yes always helpful to compare. I know I am under-replaced despite what blood tests say as my morning temp is still low and pulse mostly only in the 60s so have increased my T3 by 5mcg today to see what happens. Need to see GP though as they are stingy with the prescription as so costly and I will obviously get through it more quickly. Do you take yours in one go or split through the day?

[Hidden in reply to debjs]

It is only costly because the NHS make it so. I buy 100 T3 tabs for around £15 from abroad. It is a scandal!

[shaws]

What's the point of a doctor giving you just enough medication to bring your TSH into a range. Some of us need a low or suppressed TSH to feel better.

Maybe try a small increase in your T3, sometimes that's all it takes to make a difference. You may have to do this a few times but if at anytime you feel overstimulated drop down to the previous dose.

Read some answers to question on this link and an extract from November 9, 2005:

Dr. Lowe: The improvements you describe are typical of what we hear from patients using high-enough doses of Cytomel. Because of your improvements, and because your symptoms of possible overstimulation are occasional, taking you completely off Cytomel seems to me radically improper.

For someone taking 100 mcg of T3, we expect your pattern of lab results—a low TSH and high T3. However, your TSH and T3 levels are irrelevant to whether you're overstimulated or not. Two studies we just completed confirm other researchers findings: these tests are not reliable gauges of a patient's metabolic status. Many patients taking T3 have TSH and T3 levels like yours but still have severely low metabolic rates. Their metabolic rates become normal only when they increase their dosages further. Their metabolic rates become normal and they have no detectable overstimulation.

web.archive.org/web/2010103...

[Revsie in reply to shaws]

Thanks shaws, I really must get Dr Lowe's book as it's mentioned so many times on this site. I bought the book 'Recovering with T3' by Paul Robinson and have spent many a night reading through that, but I still think Dr Lowe's book will make interesting reading.

I didn't realise it was OK to have a low or suppressed TSH level, but when I really think about it why should this result matter if I'm taking the T3 orally anyway?

[shaws in reply to Revsie]

If you are referring to the book 'The Metabolic Treatment of Fibromyalgia' I believe it is now out of print and finding one would be like looking for gold dust. Dr Lowe died two years ago. The prices on Amazon at present are:-

3 Used from £360.88 1 New from £1,538.72 (it was around £196 last year)

recoveringwitht3.com/book/m...

[Revsie in reply to shaws]

Flippin' eck!!!!!

[queridalady]

my endo doesn't think it is OK to have a low or suppressed TSH I have written to him to ask for an increase in T3 and I am sure he will say no.....but I have to say that I have added in a little extra myself and already feel better. I suppose over stimulation means palpitations etc?

Good luck with the T3 revsie. I hope it helps you to feel better. I have been taking it for 7weeks and already feel better but am sure I need more. Keep battling on....it will be worth it in the end

[shaws in reply to queridalady]

Pity Endocrinologists aren't also scientists who understand metabolism.

[lizzie1]

My endo does not want me to have a suppressed tsh but that is exactly what i have on 45 mcg. The only thing that has improved on T3 is my brain fog. That has cleared somewhat . My endo has reluctantly agreed to let me stay on 45 mcg and they will see me again in March. I have now increased to 50 mcg but no further improvements. Will wait a couple more weeks and increase again. If i can prove to myself that i do well on a larger dose I will accept the 45 mcg the NHS give me and self medicate the rest.

I then will have to titrate back down to 45 mcg for the next blood test as they will have a pink fit if my tsh is further suppressed and I want them to continue to give me the 45. All of this is a total pain.

It really makes me angry when the numerous endos say that i should be symptom free as a result of test results. Symptoms seem to go out of the window.

[Revsie]

I must say I've thought about doing that myself. From yesterday I've jumped up to 60mcgs a day to see if this will make any difference to my symptoms although what is surprising me though is that I'm doing 20mcg jumps and it doesn't seem to affect me really although I keep reading that you should take it very slowly when increasing T3? I've been taking 20mcgs on waking and 20mcgs about 1.00pm and I'm now going to take 20mcg's around 5pm as well to see if that makes things any better? I'll present my results to the endo on my next visit and if she blows a fuse I'll agree to drop down to 40mcgs again and buy the extra on the internet as you do. It's took me so long to get the T3 that I don't want her to say I've got to go back to levothyroxine on it's own! Has anyone got any thoughts on why the 20mcg jumps don't seem to be giving me any trouble?

Thanks x