Update on Head/neck pressure post from a few days ago

[Murphysmum]

I have a previous post discussing this but as a quick recap - for some reason, after about 2.5 years of being on a steady dose, I suddenly felt unwell and v overmedicated on holiday about 8 weeks ago. I dropped my dose by 5, then another 5mcg and felt fine about from about two weeks afterwards until last week.

These are my results and I’m quite happy that the FT3 level is low for me. Where I’ve highlighted on the tracker is where I feel best, so I’ll increase by 5mcg again and see if I can get back there.

I can only assume that some perimenopause hormone fluctuations are at work, because nothing else has changed. I do need to do a vits n mins test to see where I am but I wouldn’t expect anything wildly out of kilter as I supplement regularly.

If anyone has any ideas what’s going on I’d be very grateful, I fear I may have to go and have an HRT chat at some point to avoid this in future!

[DippyDame]

Are you still taking 55mcg T3-only?

On ( higher doses of) T3-only we can no longer rely on lab results because the tests were not developed for T3-only

Instead we have to rely on good old fashioned clinical evaluation ...aka signs abd symptoms.

It's not guesswork for the patient .... it's personal observation. The patient is the only one able to assess how they feel and what they are experiencing.

This is one of the reasons T3-only is a challenge, and no doubt one of the reasons medics avoid it if possible.

What exactly are your symptoms?

What is your resting heart rate?

What is your waking temperature?

Are you anxious?

Do you have hand tremors....arms fully outstretched in front, palms down, thumbs close together....lay a sheet of paper over backs of hands and note any movement

I’m quite happy that the FT3 level is low for me. ...

not sure what you mean here, but the above labs show FT3 at 62.16% through the ref range which isn't particularly low. It's a reasonable level

I can't remember if I've already given you this link, it may help.

thyroidpatients.ca/2019/08/...

I can only assume that some perimenopause hormone fluctuations are at work, because nothing else has changed.

I don't think you can just assume anything you need to establish the cause...not guess what it might be.

Just a few thoughts.

[Murphysmum in reply to DippyDame]

Thanks dippy.

So yes, I WAS still taking 55mcg and had been for quite a long time now, until around 8/10 weeks ago when I suddenly felt very overmedicated. I posted about it then but I developed that horrible butterflies feeling, trembling muscles, felt like a racing heart (which it was for me) at around 75-85bpm whilst more or less resting.

I dropped down by 5mcg for about two weeks and whilst it did help a bit, I still felt “over” and so dropped 5 more. And all had been well until now.

I agree with the clinical test observations, and the only reason really that I test is to keep myself right - I find it hard to judge “over” and “under” as I find I get palpitations and other things with both, so I like to test now and again if I’m unsure where I am! As you can see I haven’t tested for a while despite that change a couple of months back, as I’m happy to go on symptoms most of the time.

I don’t currently have shaking hands - but did before I reduced for a brief time.

At the moment I’m just shattered, I could sleep 12 hours and then some. I had horrible head and neck pressure a few days ago hence the other post - this has subsided a bit but then I’ve been taking it easy so maybe not dipping so low. My tinnitus is mental, my head is woolly, I’m cold. I have dizzy spells though this isn’t too bad. My limbs feel like they’re full of cement.my resting heart rate is dropping to around 40bpm several time a day and while I’m moving about it’s in the high 40s to high 50s. It is alway low, around 60bpm is normal for me but it rarely drops below 50.

So all in all I kind of knew I was low before I tested, but as the high then low have come a bit out of the blue (well, the high, at least) I wanted to do bloods just to check I was where I thought I was. If that makes sense!

I’ll increase again now, but I have no explanation for why I went high (symptom-wise) a couple of months ago. Hence the query about hormones, as nothing else has changed.

I’ve been managing the move onto a combo and then onto T3 only by myself for about 5 years now, so I’m well used to checking symptoms and adjusting, it’s just that sudden high that came out of nowhere that’s thrown me, so I’m keen to try to work out what’s going on.

I appreciate your help 😊

[DippyDame in reply to Murphysmum]

I doubt I was much help.

It can be very difficult to pin-point a cause can't it.

I've been feeling a bit like you for months and it turned out to be a UTI that was the result of low cellular T3.

I suggested that and the GP looked at me as if I'd flown in on a broomstick!!

The UTI had loads if abx thrown at it which didn't help, a scan was clear, so I began to realise the UTI was a consequence not the cause... and took control. I've increased my T3 and things are beginning to settle....haven't flown back to the surgery!!

Sometimes it's just trial and error.... you seem to be clued up and doing the right things. I remember someone saying to me way back.....try it and if it doesn't work, stop and try something else!

Might you have picked up a bug of some kind that caused inflammation which upset things.....I think that's maybe what my UTI did.

I don't know enough to comment on perimenopause ....I escaped fairly lightly apart from raging hot flushes, and used Black Cohosh

Trying to join up the dots, I'd do what you are planning....increase the dose and see how you feel after a couple of weeks.

Come back and tell us....

Sorry, can't remember...are you splitting the dose? If so try a single dose. I found that didn't work for me.

[Murphysmum in reply to DippyDame]

hi, yes I split my dose. Way back at the start of my T3 journey I discovered that if I use any less than 20 mcg at a time, it’s likeihsvent taken any. Weird I know but I’ve tried smaller, more frequent splits and it always has the same outcome.

So I’m twice a day, 30 and now 25mcg respectively.

I’m not aware of any infection and I felt very well until my high. Even then I reduced and reduced again and felt fine for weeks. Now it’s like I’m really low, and despite increasing at the time of posting this original post, I’m not feeling any better yet. Which is odd.

It’s also the first time ever since starting on T3 that my tsh has been increased. A small increase I know but significant for me as despite symptoms, it has never gone up before. This has me puzzled!

I’m hoping my current symptoms clear up soon as we have a fairly major trip coming up in 5 weeks and I’d like not to be unwell for that. Although I can rationalise at home that any symptoms I have I have had before at some point and they’ve always cleared up, I know fine well I’ll drive myself daft with anxiety if I’m unwell abroad or on a long haul flight. I’m always worried I’m going to have a stroke or something major when the dizziness or palpitations hit, I’ll be seriously panicking if it happens when I’m half way to the far east.

Anyway, meantime I’ll wait for the dose increase to kick in, and try to work out what’s gone awry. Fingers crossed it sorts itself out soon.

Thanks for your help, and future utis noted!

[Incoguto in reply to Murphysmum]

Btw the reason why small doses of t3 when splitting don't work so well on t3 only sometimes is that not all t3 gets into those cells from the dose, so smaller the dose smaller the wave we shall say, at least that's what Paul R said to me.I think this could do with your brand change, if I were you I'd immediately get back to what I was on that Mercury, it could be as simple as that.

Btw do you recommend t3 only? I'm trainsitioning right now.

[Murphysmum in reply to Incoguto]

Hi, yes I’m aware of that actually, I just couldn’t be bothered going into it on my last post!

And it’s still a bit odd as not everyone reacts that way.

Yes, certainly for me T3 changed my life. In very basic terms, levo just stopped working for me, so whilst doctors were adamant my bloods were fine, my life just stopped.

As soon as I started to combo I could feel the difference, not all positive and straightforward (see my old posts) but in the end its what I needed.

It still needs work now and again as you can see, but on the whole it’s life changing.