Can someone please clarify re rt3?: Yet again my... - Thyroid UK

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Can someone please clarify re rt3?

puncturedbicycle profile image
24 Replies

Yet again my thyroid results look 'optimal' but I still feel tired and very weepy, low mood, etc. Doc thinks it is hormonal (perimenopause) and will do hormone tests. I'm wondering if it is rt3.

I'm on 63.5mcg t4 and 25 t3. Was originally on lots more - 150 t4 and 25 t3, then 125 t4 and 25 t3, then it seemed my tests were coming back at the higher end of t3/v low tsh but I still wasn't feeling well. Temporarily reduced meds due to palps, couldn't raise again due to palps. Iron and b12 low, but I've been working on that for 3 or 4 weeks so it should be at least a bit better. Feeling tired but better than when I was on more meds. Bowels fine, even a tiny bit on the overactive side if anything. Temp unchanged, no more pounding heart but pulse a little on the high side (90ish now, but I have had quite a bit of coffee today).

I read this: content.spineboy.com/view.p...?

Wondering if it's worth stopping my t4 for four(?) days and then slowly increasing my t3 to make up the equivalent of the t3/t4 I'm on now. Am I correct in thinking that might tell me if there is an rt3 issue? Or would I have all hypo symptoms (bowels, low pulse, etc) if I had an rt3 issue?

Or is it possible that even on this reduced dose of t3/t4 I'm going a little hyper and it has nothing to do with rt3?

Apologies if any of this is muddled. I've been dealing with emails and phone calls all day and I'm trying to be concise.

Cheers all. xx

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24 Replies
shaws profile image
shawsAdministrator

I had palpitations and other symptoms and felt ill every day on levo. I am fine on T3 alone. So maybe reducing T4 and increasing T3 may work for you too. It is trial and error sometimes.

puncturedbicycle profile image
puncturedbicycle in reply to shaws

Thanks for your reply shaws. I have tried this before - the reducing t4 and increasing t3 - and didn't feel well at all (had to go back on usual doses in a few days) but wondered if a total t3 regimen (no gradual reducing) might show results - ? A lot of water under the bridge since I tried last. I no longer seem to get terrible anxiety when I reduce t4, so that's promising! x

shaws profile image
shawsAdministrator in reply to puncturedbicycle

Just in case you haven't seen this link:-

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

puncturedbicycle profile image
puncturedbicycle in reply to shaws

Thanks shaws. Was there a particular bit you wanted me to see or should I read the whole thing?

shaws profile image
shawsAdministrator in reply to puncturedbicycle

I think the two (top right-hand) : as hereunder

Doctor Says "No patient needs to

take T3, and T3 can be

dangerous." My reply to him.

Endocrinology Specialty's

Presumption that T3 is

dangerous

Also the right-hand side column from July 5, 2000 onwards.

Clutter profile image
Clutter

Blue Horizon do a test for rT3. I don't think NHS test for it.

I wouldn't change anything until after your hormone test. If it's perimenopause titrating your thyroid meds could make you feel worse.

You might also feel better in another 2/4 weeks when your iron and B12 supplements should be working well. Is your vitD good? Low in range can cause low mood.

I'm sorry you're still feeling unwell. Its such a disappointment when you felt well last year and then it went tits up.

puncturedbicycle profile image
puncturedbicycle in reply to Clutter

Thanks Clutter. Tell me about it! That was heartbreaking. I felt so well and suddenly I felt awful.

Vit d good, somewhere near 80ish last time it was tested, but I'm on a little more now so should be closer to 100. Also doc told me I should be on much more b12, like 7000 units a day - ? - not the 3000 or so I was taking.

Thanks for your sympathy too. Nice to know I'm not alone in this. :-) xx

marmaris profile image
marmaris in reply to puncturedbicycle

This was me Vit D was 23 now 78 but continuing.

puncturedbicycle profile image
puncturedbicycle in reply to marmaris

I'm a little on-edge about continuing - how will I know when I am at the right level and will it keep rising? - but in fact it has been hard for me to get my levels anywhere near right, so for now I will continue. I could always take my spray every other day if I have any worries.

It's times like this when I think I really should buy a job lot of those City Assay vit d finger prick tests for £200 and just test myself twice a year.

Well done for raising your levels. I know how difficult that can be.

stuartwwhouse profile image
stuartwwhouse in reply to puncturedbicycle

b12 5000mcg methylcobalamin by natural factors (sublingual) are amazing and cheap at bigvits - just a thought :-)

puncturedbicycle profile image
puncturedbicycle in reply to stuartwwhouse

Super. Many thanks for that.

puncturedbicycle profile image
puncturedbicycle in reply to stuartwwhouse

Just to add that I've been in touch w that b12 charity (Dr Chandy I think?) and they are super-helpful w injection info so anyone w questions should have a look at their site. I don't have the link to hand but if you google Dr Chandy and b12 I think it should be pretty simple from there.

Clutter profile image
Clutter

If you decide to stop T4 there's no need to wait 4 days before increasing your T3. When I had to stop 100mcg T4 4 weeks before RAI I was immediately switched to 60mcg T3 for 2 weeks prior to RAI and felt a lot better for it too.

puncturedbicycle profile image
puncturedbicycle in reply to Clutter

Ooh, this is helpful. I thought you had to allow some t4 to leave the system before bumping up the t3.

Are you a bit of a maverick telling me this? I got stick here when I suggested you could add a little t3 without immediately reducing t4. :-o :-) xx

Clutter profile image
Clutter in reply to puncturedbicycle

Not maverick. :-D You're switching from T4 to T3 not adding to it. T4 will gradually quit your body if you don't take any. If you were adding T3 to T4 you should reduce T4 if you wanted to be on an equivalent dose. You know, the dose you ain't happy wiv so you're adding T3 ;)

How low is your B12? 2,400mcg got mine from low 300s to 700 in 6 weeks. Would have taken longer if the spray hadn't been so yummy :-D

puncturedbicycle profile image
puncturedbicycle in reply to Clutter

Hmm, okay, I'm trying to take that onboard. So how will I know how much t3 I should be taking on its own? My bloods were pretty much ideal (tsh suppressed, t3 near the top of the range) on about 75mcg t4 plus 37.5 t3.

Mine are 1000 units but I usually take three of them. Doc says no, take 7000 or more per day. And mine are delicious too! :-)

Don't have any issues getting my b12 up, but it seems like I fail to store it. As soon as I stop taking it (eg a few weeks before testing) it plummets.

Clutter profile image
Clutter in reply to puncturedbicycle

Hi Punctured,

I saw your PM :) 63.5mcg T4 is roughly equivalent to 21mcg T3 so you need 2 x 25mcg in total. How are you taking it? Splitting or in one dose?

I doubt you'd feel the lack of T4 already as it will take up to 8 weeks to leave your system.

Sex hormones affect thyroid big time. Women suffer more than men because it can be triggered by puberty, pregnancy and menopause.

puncturedbicycle profile image
puncturedbicycle in reply to Clutter

Thanks so much. Sorry, I didn't mean for it to look like I was chivvying you, more that I thought it might be easier to pm. :-)

Okay, is two tabs the same as the equivalent dose we spoke about above? I think we're on the same page. Are you figuring the ratio as 3 to 1?

I may see how I go taking 1.5 tabs t3 for a week or so unless I begin to feel hypo. Happy to try taking that at once. I don't normally feel overstimulated on a single dose. I did at one stage early on but it passed.

I'm in two minds about taking a larger dose all at once. On one hand I have some beta blockers in case I feel hyper, but on the other hand I really hate the palps. One time when I tried to raise my t3 the palps were like an earthquake. It was brief but really unsettling.

Thanks again. :-)

Clutter profile image
Clutter in reply to puncturedbicycle

Don't be soft, I know you weren't chivvying me. 46mcg T3 would be equivalent to the T4 + T3 you were taking based on 3:1 ratio. 2 tabs @50mcg is 4mcg more than you were taking and 1.75 tabs @ 43.75mcg is a tad under so splitting dose and increasing gradually is probably best for you. I hope you don't need the beta blockers. If you do it may be that you have increased too quickly.

puncturedbicycle profile image
puncturedbicycle in reply to Clutter

Yes, very sensible, thank you. I will increase in increments and hopefully won't need the bbs.

Like you, I use the 3:1 ratio as I never found 5:1 to reflect my experience.

I took 35mcg t3 this morning and felt/feel fine, so that's something. I have 25s I bought myself and 20s my gp prescribed, so I'm taking a 25 and half a 20 for the moment.

Having a little trouble sleeping for the last two nights, which I hope will change once I'm on enough meds. I know it seems too soon to notice a change, but in the past when my t4 was falling it really affected me, not unlike when your blood sugar is falling, it may not be low but the fact that it is changing is noticeable - ?

Anyway, so far so good. :-) Thanks for your support Clutter. It is more helpful than you know. x

Clutter profile image
Clutter in reply to puncturedbicycle

It seems sensible to take 35mcg while you still have a store of T4 in your system. As that exits you'll probably feel the need more T3 but no need to rush, a few days of feeling knackered isn't going to damage you :)

puncturedbicycle profile image
puncturedbicycle in reply to Clutter

Yes, it's nothing new. :-)

It's not the tiredness I fear, it's the crazy anxiety. If I feel really awful in a few days my resolve will waver. But as I said, recently reducing t4 hasn't had quite the same effect as it did a year ago so maybe I'll be fine. Fingers crossed. :-)

Helping my mum move house in a couple of weeks and have various other plans between now and June, then off for a long trip with my partner so I am seizing the day. If not now, I don't know when.

Aurealis profile image
Aurealis

Even if peri menopausal, you'll get more symptoms if thyroid levels are wrong. Think if you have reverse T3 you can get a hyper as it clears. This could be why you had problems on higher dose of T3. It takes ages to find the right balance of T3, don't get discouraged, you'll get there! Peri/ meno makes getting T3 right even more difficult and other things that cause palpitations cloud the issue too (eg caffeine and alcohol). Follow your instinct is my advice.

puncturedbicycle profile image
puncturedbicycle in reply to Aurealis

Thanks for that. I think doc was saying (at least based on my excellent-looking test results) that she thinks we need to address perimenopause (oestrogen dominance) to help me respond to the 'good' levels of thyroid meds I'm on now.

It is something of a mystery why my thyroid meds aren't making me feel amazing with such good results, but, yk, this is not the first time I've heard this. The same was said when I was on 150mcg t4 and results were 'perfect'.

So thyroid problems make the menopause problems worse and the menopause makes thyroid problems worse. Halleluja! It's great to be me! :-)

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