Help. T3 stable for ages but now gone off kilter

[Murphysmum]

Hi, I’ve been around the forum for a long time but as I’ve been stable I haven’t posted in ages.

I’ve been on around 55mcg T3 only for a few years now. Sometimes I lower it by 5mcg, sometimes I don’t depending on summer/winter etc, but generally I don’t change it.

However recently I’ve been struggling. In the summer when I last tested I was over medicated, and above the recommended range on Medichecks. (I find too if range works, but I was feeling flaky, dizzy, a bit faint) so I reduced by 5mcg. All was well.

I’ve had a couple of “thyroid days” recently, just not feeling quite right and now helpfully, I’m on holiday and I’m feeling awful.

My legs shake like jelly after the slightest exertion, and I get the faint/dizzy/nauseous feeling we all love so much. My muscles in my arms feel restless, and my neck feels tight. My arms ache to hold them up to brush my hair, and my legs feel like tonne weights.

Obvs I can’t do bloods as I’m not at home, but can anyone suggest if these are likely to be high/low symptoms? I’d like to be able to improve how I feel until I get home if I can.

I suspect my vitamin levels are on the low side, as I had an op at the end of last year where I had to stop taking everything, and I’ve never quite got my act together since. I have been supplementing, it’s just been a bit hit or miss, so i suspect these need to be optimised again.

I’m just confused at the moment though, I feel like I’m potentially very low, but having only reduced by a few mcg and now being in a warmer climate, I’d have thought ok.

Help - anyone?

Edited to say my hormones are also a bit off at the moment (I’m 47) so they could be affecting things maybe?

[beh1]

tbh I feel we’d just be guessing, without blood test results. What’s your heart rate like in general? When resting? Higher than normal? And your temperature (I know you are in a warmer climate though)?

I’d be inclined to reduce lio a tiny bit and see what happens. I always have to reduce my lio in warmer weather. It’s probably a safer bet than increasing.

Do a full vitamin and thyroid test on return home.

[Murphysmum in reply to beh1]

Thanks, I appreciate its guesswork!

I just wondered if the symptoms rang alarm bells one way or the other with anyone.

I’m not sure what my heart rate or temp was when I felt most unwell as we’d just climbed a lot of steps! However generally it doesn’t seem too high, though mine is always particularly low.

Interestingly this morning, I felt fine when I got up,, took 5mcg less than I would normally and now an hour later feel v over medicated. So that’s interesting.

I’ll go with a lower dose for a few days and hope that helps. This is just really rubbish timing as it’s the first time we’ve been away in 4 years and I really want to go and do stuff!

[DippyDame]

It's guesswork from afar but I wonder if a handful of dozy T3 receptors have been wakened up in the cells by your T3 dose .... resulting in a reduced need for so much exogenous T3, and causing you to feel overmedicated.

It happened to me but I was on a much bigger dose... I now need much less T3 to function

Try reducing to 50mcg , observe and see how you feel.

Check nutrient levels and supplement if low.

Take care.

[Murphysmum in reply to DippyDame]

Thanks  DippyDame

I appreciate its guesswork - aa I said above, I just hoped the symptoms screamed over or under at someone!

Again as I said above, having taken a slightly lower dose this morning, within an hour I’m feeling worse again - muscles heavy, mild anxious feeling, so generally over. I hadn’t really noticed this before so I think you’re right.

I’ll stick with a lower dose and see how I get on. Is there anything I can do to lower it sooner? Ease the symptoms I feel at the moment? I’m wishing I hadn’t taken my T3 this morning tbh!

Is what you describe a thing then? Does it happen that receptors are wakened up (so to speak)? If so does that tend to be permanent?

Obvs I’ll do bloods when I get home and rake it from there, but this might explain why I’ve been a bit all over the place over the last 6 months or so.

[DippyDame in reply to Murphysmum]

I'll have to try and find the papers ( my filing is chaotic!!) but as far as I know inactive T3 receptors can be reactivated.

It's the only answer I could find that explained why I first needed around 200mcg T3 to see any improvement and have now reduced to nearer 100mcg. I'm counting on it being permanent!

I’ll stick with a lower dose and see how I get on. Is there anything I can do to lower it sooner? Ease the symptoms I feel at the moment? I’m wishing I hadn’t taken my T3 this morning tbh!

Sadly there is no quick fix and chopping and changing your dose won't help how you feel....it will confuse the system! It takes time for any change to reach cellular level and onwards. It takes at least 6 weeks for a new dose to settle. I learned the hard way after trying to speed things up! My case is fairly extreme but it took me at least 3 years from levo to high dose T3-only to find my therapeutic dose....a few tweaks over a few months will probably sort you out!

Try reducing by 2 or 3mcg... and wait. I found being patient very hard but it's the only way

Yes....start with bloods, but only after 6/8 weeks on a steady dose.

Good luck

[TiggerMe Ambassador]

You are likely onto something with your sex hormones when they start to wain you can feel really flaky and like you say grab some decent vits and mins 🤗

[TiggerMe Ambassador in reply to TiggerMe]

just had another thought, if you feel worse in the heat how about sodium levels?

Add some salt to orange juice

[Murphysmum in reply to TiggerMe]

I thought of this and had some salty crisps and a full fat coke (to cover both camps) and I did feel better.

I suspect coincidence as the symptoms occurred several times when I’d have plenty salt but it was definitely worth a shot, thanks!

[TiggerMe Ambassador in reply to Murphysmum]

Glad to hear it helped🤗 the idea of adding it to orange juice is the vit c element which helps your adrenals

[Murphysmum in reply to TiggerMe]

It’s an old favourite in our family… I remember my dad feeding us kids salty orange juice on holiday in the 80s!

Hated it 😂

[TiggerMe Ambassador in reply to Murphysmum]

Magic moments 😁

[sparkly]

As I started reading this it brought back memories of myself 7 years ago. After being stable on t3 for years I all of a sudden felt like my t3 was no longer working. Upping, downing or stopping I was just a mess. My Endo didn't know what was the problem so after being a mess for while I went private to see a really good Endo. I shuffled in to her office and gave her my list of problem. Straight away she said I was perimenopause, this I'd never heard of. Not only was she a brilliant Endo but luckily for me an amazing menopause specialist.My sex hormones was playing havoc and causing my thyroid hormones to not play ball.

Took a while as hrt isn't an overnight fix and added thyroid issues made it harder. Finally after 9 months settled on utrogestan and estrogel. I saw her in total for 18 months, she saved me.

Back then there were no groups or pages with the help and advice like there is today so it wasn't until 18 months ago when I finally joined a group and I learnt about testosterone. Fortunately i was very lucky and had it prescribed straightaway. Then the final piece was in place and everything was at last balanced. For me testosterone feels like it helps with my thyroid side of things as until then I still would be fatigued, I ached, low mood, brain fog was horrendous and once on it everything went and and I just felt happier, calmer and a general well-being feeling. These things I would blame my thyroid on and would up or down my dose to try achieve wellness.

Now I'm on a lower dose and feel both sex and thyroid hormones are balanced. I feel I'm post menopause now.

I too was 47 at the time this all started. From late 30's but usually 40's the dreaded peri is likely to hit. Its not all about hot flushes, i've never even had one.

[asidist in reply to sparkly]

Sparkly, were you still having regular periods when you started having the issues, and when you started HRT?

And, a bit tangential, but did the testosterone (or any of the hormones, for that matter) cause any changes to your hair (good or bad)?

Thanks for sharing your story.

[sparkly in reply to asidist]

Hi, yes I was still having regular periods so never imagined it was anything to do with the menopause. My consultant started me on continuous regimen from the beginning and I was very fortunate that my periods stopped straightaway.Some ladies experience hair loss on testosterone but I didn't. I have although gone from ping straight hair to curly over the course of a year. I ask my nhs endo if lack of t4 with being on t3 could be the reason and he said no so it must be either the testosterone or just my hormones in general. It has always been the straw since thyroid issues but this is a new one to deal with.

I imagine there are lots of ladies on here who like me think their symptoms are down to thyroid when actually it's their sex hormones playing havoc

[asidist in reply to sparkly]

Interesting, didn’t know we could get regular periods through perimenopause! I think my issues are more likely down to my very longstanding low FT3 but beginning to wonder more and more about perimenopause possibly beginning to play a role as well, since I’ve had so much trouble tolerating the doses needed to raise my FT4 and FT3. Seems like a good idea to get checked out just in case, and if nothing else, have levels to reference against later.

Just spent some time searching out a doc with some menopause expertise, which I think will be key. Will make the appointment tomorrow. Thanks!

[sparkly in reply to asidist]

Shoukd have said, regular for me was always a week or two either side. Never followed the 28 day cycle or whatever it was supposed to be.

[Murphysmum in reply to sparkly]

I think you’re right here. Thyroid is the first thing we (thyroid peeps) look for, but for me I’ve know for years my T was low, and I’ve already had to introduce PG to make me more stable, so I knew it was on the cards!

And if nothing else has changed….

Recently I’ve had other hormonal symptoms, sore boobs, spots (spurs for goodness sake - I had few when I was a teen!) hair falling out etc etc, so this fluctuation should’ve been expected really. The timing is a total pain though.

[Murphysmum in reply to sparkly]

Thanks sparkly

Everything you’ve said is exactly what I suspect and fear!!

It took me a good couple of years of fiddling and experimenting before I found (what I thought) was my ideal T3 dose, and I knew when my hormones started to wane, I’d end up doing it all over again.

In fact I’ve considered seeing the doc a few times but put it off as they don’t understand and I’m not sure I can face it!

I’ve long suspected testosterone has a lot to do with it for me too, especially the muscle issues. I was tested about 5 years ago and it was rock bottom then but no one was interested.

I’m on progesterone and that definitely ironed out the thyroid peaks and troughs I was having, but when I’ve tried T (I sourced my own) it pushed up my oestrogen and I stopped it again.

I feel better today having lowered my T3 dose a bit, we’ll see how long that lasts and thanks, I will look into HRT properly now and possibly start down that route 😩

[sparkly in reply to Murphysmum]

I know in the peri/menopause world specialist/dr will only prescribed testosterone if you are prescribed oestrogen and that's if you're lucky to find someone who will. They say your oestradiol level has to be adequate before introducing testosterone as it just turns into oestrogen if not. But no one actually knows what that adequate figure is!

Lots of false info flies about in the meno world so you really just have to find what works for you.

Ladies with thyroid issues likely have to do things differently as we can be more complicated.

It has taken me 13 years to finally find be balanced both thyroid and sex hormones. I just hope I stay on this even keel now 🤞

Good luck in finding your balance

[am111]

It could be B12. Hypothyroid patients frequently have low B12. Once-a-month B12 shot might help. You can self-inject too if the doctor refuses to do so. However, do get your B12 tested before supplementation, as supplementation increases it temporarily and you will not get the true picture.