My first blog!

[Agapanthus]

Just joined here the other day. So great to find a UK based group where people are discussing their thyroid issues! I go on a lot of US ones, but find they don't always understand the UK struggles, though they are very informative in other ways.

I have been hypothyroid for 17 yrs on T4 only and diagnosed with ME/CFS around 5 yrs ago. To be honest, until last year it never occurred to me to explore the possible thyroid connection, as like many, my blood tests on T4 almost always came out well.

However I managed to get my GP to send me to a sympathetic endo in Dec who let me try T4/T3, but I felt a lot worse from day 1 and stopped after 6 weeks. This was before I had read of Paul Robinson's book on trying the circadian rhythm method for T3 though.

Now I am trying T3 only though my endo has discharged me to my GP, who knows very little on this subject. I have been using Paul's book and the internet to help me. I am on Week 3, but so far have developed a lot of worse stomach issues. I have developed severe food intolerances anyway in the last few years and wondering if the lactose in T3 is doing it for me, or other fillers? However I didn't have this severity on the T3/T4 combo so it seems unlikely.

I don't want to give this up too quickly as I doubt I will get another try at it, but wondering if I would have the same issues on NDT if I tried that next. And does T4 also have lactose in it I wonder anyway? (just looked this up, and it seems it does!) I did have stomach issues on T4 but have helped them a lot with using Betaine HCL, but this is different I feel. I am already gluten free/dairy free/soya free/processed food free etc etc.......

[Hashi_since_age9-1988]

bear in mind that being on too much can also cause muscle pain/weakness and fatigue. What are your T3 T4 and TSH levels? Any other deficiencies?

[Agapanthus]

Hi there Hashi. Thank you for your comment. I guess that most people would know if they were on too much T3 though long before the muscle pain/weakness and fatigue (didn't know that was a sign of too much T3?) as they would get other signs and symptoms ie racing heart, diarrhoea etc. I am carefully recording my temps/BP and pulse rate as I increase my T3 intake.

So far I am only up to 25mcg per day as I am tailing off T4 and don't want to overdose while T4 is still in my system (apparently can take 8 weeks to go entirely). I was on 100mcg of T4 before.

These were my blood tests in Dec just before I stopped T4 to try T3/T4 which I tried first.

TSH 0.04 (0.35-4.5)

FT4 18.6 (10.5 - 26)

FT3 4.6 (3.9 - 6.8)

I have been checked for Vit D, B12, Serum Folate in the last year which are all fine as far as one can know from bloods.

Ferritin is on the high end which I have been told could be inflammation.

I did have low platelets and low lymphocytes though in this test. Going to get it repeated soon by my GP.

[Hennerton]

Hi Agapanthus, I am in the same week as you of T3 only therapy. This is the end of the road for me as I have tried all others, including Armour on two separate occasions. I also tried T4/T3 twice, because I wanted to be really sure it wasn't working. This saga has been going on since last August.

I do not have stomach issues but the initial euphoria I felt when I started T3 has gone. Two weeks ago, within 20 mins of taking it my muscle and joint aches disappeared. They came back as each dose was wearing off. Now this is not happening but I am hoping it is because the dose is still quite low, so am persevering. Like you I am recording temp, blood pressure and pulse.

Like you, I wasn't aware that too much T3 could cause muscle aches etc. I thought it was just the usual signs of over activity. In any case we cannot be on too much yet. It is far too low a dose.

I was also on T4 for several years, following thyroidectomy, before I decided at last to do something about my muscle and joint aches. Like you my blood tests were always fine until I insisted on one for T3 which came back below the reference range. That was a relief because I had something solid to back up my moans!

Should love to keep in touch and hear more of your history, especially as we are currently on the same stretch of stony road! So sorry I cannot be more helpful on the stomach issue.

[Agapanthus]

Hi Hennerton

Nice to chat to you. Do pm if you know how - I haven't tried that yet.

I am sorry to hear that this is your last chance re treatment that helps. I did try the T3/T4 combo for only 6 weeks but immediately felt worse which I was very surprised by. I actually had more fatigue. Now I am wondering if I was just going down with something, but 6 weeks should have been a good trial.

I did ask Paul Robinson and he said that probably either I didn't take enough (though that wouldn't explain immediately feeling worse), or there was a Reverse T3 issue. Although I haven't had a Reverse T3 blood test, I reckoned that if I stay on T3 for a while that should clear anyway if I do have that.

Are you doing the T3 experiment with the early morning dosing (ie the Circadian dose in Paul's book?). I find it hard to get back to sleep again, so that's not helping much with the fatigue!

I think the stomach issues are improving today so maybe it wasn't the T3. However as we are both still on low doses of T3 I am guessing that as the T4 leaves us then we will be getting increasingly hypothyroid for a bit. What dose are you on today? I am on 25mcg spread over 3 doses - 10mcg, then 2 at 7.5 for now.

I don't usually have muscle aches and pains, so my T4 must have been helping a bit as at the moment I feel worse in that direction! So I suppose that has taught me something helpful. I did have an FT3 result that was below range, but by the time I got to the endo it had gone over the range again.

I am sorry to hear of your thyroidectomy - why did you need to have that done?