New results, pituitary and Paul Robinson - Thyroid UK

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New results, pituitary and Paul Robinson

Murphysmum profile image
7 Replies

My new results are as seen. I’ve now been on 50mcg T3 (split x2) per day and 12.5mcg levo per day. My reason for the low dose of levo is that I found levo was not helping me and in fact, it was making things a lot worse. However, when I stopped it completely I felt the highs n lows of the T3 very acutely. I added in a small amount of levo and it did level things out but the balance between too much (25mcg every other day) and too little, (12.5 every day) has been hard to strike. Quite frankly, given these latest results I think I’m now going to stop it completely and split my T3 dose more often.

My first question is my TSH has gone up (not much but still, it’ll keep the drs happy) - why? Presumably I’m not making much T4 at all now given the low level, if TSH is up does this mean I could need a little more thyroid hormone? I mean, I know that’s what it means, but I’m confused as to why it’s come up a bit now! Just please could someone clarify this? 🤪

I still have a little muscle weakness sometimes and whilst I’m waiting on iron results too (which I suspect is through the floor despite eating well and supplementing), the removal of levo is to see if this stops and if not maybe a slight increase in T3 will help.

I have been reading the above author (not sure if I can mention him!) and whilst I’m glad I’ve mostly been through my thyroid journey before reading it, it rang true on so many levels. He refers to the pituitary often, the HP axis and it’s effects on cortisol in his case but also everything else it affects.

Right at the start of my issues, I felt sure (well, I know) that my HP axis is all over the place. Since the start of my problems I’ve had issues with estrogen dominance and I suspect my testosterone is low too. Any doctor I’ve asked has brushed it off but it’s just too much of a coincidence and indeed I believe what happened to me was a perfect storm, agains term used in the book.

So, I’m interested in trying the C3TM method to see if this helps things. My only other options are in my opinion “sticking plaster” choices from the gp that will only need to be repeated in future if I don’t sort the underlying issue.

I don’t have cortisol problems however. Right at the start of my problems I had it tested and whilst it was maybe slightly low, the levels throughout the day were as expected. This was nearly three years ago and after a period or extreme emotional stress so I suspect I’m fine now. Has anyone tried C3TM without cortisol problems? I’m worried it might see all my hormones increase and make things worse. (Any other reliable suggestions for improving hormone balance are also welcome!)

Thanks in advance as always 😊

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Murphysmum
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greygoose profile image
greygoose

the balance between too much (25mcg every other day) and too little, (12.5 every day) has been hard to strike

Doesn't that work out to the same thing?

My first question is my TSH has gone up (not much but still, it’ll keep the drs happy) - why? Presumably I’m not making much T4 at all now given the low level, if TSH is up does this mean I could need a little more thyroid hormone?

As your TSH is suppressed, now, what was it before? The difference must be so slight, it's hardly worth bothering about, and at that level doesn't mean anything at all.

So, I’m interested in trying the C3TM method to see if this helps things.

But, isn't your problem thyroid hormone resistance? I don't see how C3TM could help with that. That's my problem, which is precisely why I haven't tried C3TM.

Murphysmum profile image
Murphysmum in reply togreygoose

Thanks gg 😊

Sorry, I should’ve been clearer. I began taking 25 every other day but then as it didn’t seem enough I started taking 12.5 every day and 25 a couple of days a week to top it up a little. I neglected to mention that it. It was still early for me!

I know the TSH is still suppressed but previously it was 0.001 or 0.006... I guess as you say it’s negligible anyway but I was just curious.

Isn’t problem resistance? For a while I thought it might be but wouldn’t that mean I needed much higher doses? I’m settled on 50mcg per day now and I feel like I need some tweaking. I still get muscle tiredness/quick fatigue rather than weakness maybe, and I can’t quite tie this down. I think it’s linked into my cycle, I’m going to start keeping a diary now. Does that mean it’s resistance? I can’t seem to find a definitive answer.

But on the whole I am SO much better. I’m struggling with finding the exact dose ss on days that I’m very active (long fog walk, 10k cycle with the kids) I can still feel a bit ill and I’m sure that’s just needing more T3. You can correct me if I’m wrong 😊.

Iron levels just in: all mid range so done improving needed but better than last time I checked.

greygoose profile image
greygoose in reply toMurphysmum

OK! lol I understand. I thought I was seeing things. But, if you add in the odd 25 mcg here and that, that explains it.

I think the difference in your TSH is totally negligible, and doesn't mean anything at all. Once your TSH gets below 1 it doesn't mean much, anyway. What's more, slight variations like that are to be expected.

Isn’t problem resistance? For a while I thought it might be but wouldn’t that mean I needed much higher doses?

It's not the dose itself that indicated resistance, I don't think, so much as the level of FT3. The dose depends on how much you absorb at gut level. The FT3 result shows how much you have absorbed at gut level, but also whether you're absorbing it at cellular level. If you have a very high, over-range FT3 then it's not getting into the cells very well. Hope that's not too confused.

I still get muscle tiredness/quick fatigue rather than weakness maybe, and I can’t quite tie this down.

Well, it could mean that you need more T3, but how's your vit D?

Murphysmum profile image
Murphysmum in reply togreygoose

Ah ok thanks. That makes perfect sense, not confusing at all. Do you know, for the amount of time I’ve spent reading and learning and trialling things, sometimes I just can’t get my head around it! The knowledge is all in there, just buried deep! 😂

So as it’s so individual, we have no way of knowing if my result is about right for a 50mcg dose, right? I mean, my bloods look good in theory, not crazy high and I feel better if not 100% healed (we can all dream...) but that still gives me no way of knowing if it’s resistance or not. Or am not getting it? 🙈

Vit D I have no idea though I supplement most days with the betteryou spray so it should be ok.

I must do a vit check now though.

Moving forward, I want to firstly try splitting my dose once more, so 3x a day and then maybe increase. To give you an example of where I am I can do long walk on varied terrain and be fine, a long cycle again varied - fine. One day did 30 mins on our cross trainer, felt fine, the next time I tried it a few days later I had to lie down for half an hour afterwards, feeling dizzy and horrible. I can’t seem to work it out!

greygoose profile image
greygoose in reply toMurphysmum

I do think you have to accept these variations in reaction as being normal human behaviour. There are so many things that can affect us in one way or another. We're not perfect machines.

50 mcg is what a lot of people would call a high dose, but to others, it's quite low. We're all so very different, which makes interpreting test results all the more difficult. Your FT3 is at the top of the range, which might be too high for some people, but not high enough for others. But, you seem to be absorbing well from the gut. Trying to split your dose into three might give you an indication how well you're absorbing at a cellular level. If you feel worse, you're not absorbing it very well. If you feel better, then your absorption would appear to be fine. It's all trial an error.

But, to be on the safe side, always take it in the same way you would levo, empty stomach, etc.

Murphysmum profile image
Murphysmum in reply togreygoose

Thanks, I wasn’t sure how I’d know if it was working better or not, so that’s helped.

Well, here we go again.. nothing to lose 😊

greygoose profile image
greygoose in reply toMurphysmum

But everything to gain! :)

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