muscle pain and weakness on levo : hi everyone... - Thyroid UK

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muscle pain and weakness on levo

Ajva profile image
Ajva
14 Replies

hi everyone,

3 days ago I swapped from 1 grain armour plus 50mg of levo (tirisont) to 100mg levo (tirisont) and 9.5 mg of t3.

I am having problems with muscle pain and weakness. To use the expression I feel like I have been hit by a bus, would be the only way I can describe it.

This seems to happen every time I go on a synthetic t4.

I had many reasons I can’t up my NDT armour, 1 being if I go over a grain my t3 goes over range and I feel hyper within a day. 2 my t4 is still on the lowest number with the combination (1 grain NDT and 50mg t4). If I up the t4 it also puts my t3 over as I convert ok.

my body just seems to not tolerate synthetic t4. I am only on day 3 and unsure whether to persevere or throw in the towel, as I feel horrendous.

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Ajva profile image
Ajva
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14 Replies
RedApple profile image
RedAppleAdministrator

Sounds to me as though you are overwhelming your body with thyroid hormone. For someone who converts ok, that's a high dose of T3 on top of the T4. If it were me, I'd have one day without any thyroid meds, then start on T4 only. I would drop the T3 and just let your body get used to the T4 for a while.

Ajva profile image
Ajva in reply to RedApple

my Dr has basically just given me the equivalent of t4 and t3 of what I was on. But because they only come in 25,50 and 100mg (tirisont) I have had to go on 100mg instead of 88mg t4.

I think your right. I always need a bit of t3 as I have ME and when I drop the t3 I feel dreadful. I am tempted to ask my Dr if I could just drop down to 75mg of t4 for now.

I think you right my body is over loaded. Thank you!

RedApple profile image
RedAppleAdministrator in reply to Ajva

Thyroid hormone dosing is not an exact science. It's very much an individual thing and the only way to find out what works for you is by trial and error. Your doctor can do the prescribing, but you are in control of what doses you actually swallow, and how you feel is something only you experience.

' I always need a bit of t3 as I have ME'

 9.5 mcg of t3 is more than 'a bit'. For someone who converts ok, 5mcg dosed twice a day (i.e. 2.5mcg each dose) is probably plenty. Even just 2.5mcg a day may be enough.

Ajva profile image
Ajva in reply to RedApple

ah I see I didn’t realised that 9.5mg was a higher dose of t3. Your right it is trial and error and only we know how we feel regardless of bloods. I will however get bloods done sooner than 4 weeks just to check I am not hyper as I can not risk being hyper again when I have pots.

Jaydee1507 profile image
Jaydee1507Administrator

Any big changes in thyroid hormone will cause you to feel like you've been hit by a bus. Been there. You just have to ride it out and give it a few weeks. Ideally in future make smaller changes.

Ajva profile image
Ajva in reply to Jaydee1507

yes I see what you mean. That is good to know that other people feel the same when changing doses etc.

What would you suggest to do differently next time. I tried adding the levo in gradually to the armour so 12,25 then 50mg. Then stopped armour and went on 100mg t4 and the 9.5mg t3 so the dose matched up.

The problem I had is I needed 88mg or tirisont (levo) but the capsules only come in 50,75 or 100. So I had to either go down on t4 (but my t4 is already barely on range sitting on lowest number). Or increase to 100 so 12mg more t4. So I was not keen on a decrease due to being systematic at the moment.

Hope that all makes sense! Thank you

Jaydee1507 profile image
Jaydee1507Administrator in reply to Ajva

I think changes of 12.5mcgs Levo are recommended here which I would echo. For T3 the max change is 5mcgs at a time every 2 weeks. It's obviously tricky if you're dealing with Armour which is a combination tablet. Slow and steady wins the race!

adin profile image
adin in reply to Ajva

I don't think your ndt+levo dose(36T4 & 8T3 in ndt+50levo) is the same with 100levo +t3. I'm on 88mcg of Tirosint +1 grain of Erfa. I was on 125 tirosint +10 t3. I think Tirosint is stronger than other levothyroxin.

Ajva profile image
Ajva in reply to adin

no you are right if you read a comment I put above. I was on NDT armour which is (38 t4, 9.5 t3) plus 50mg tirisont. The pharmacy I use can not get in the 88mg of tirisont they only do 25,50,75,100mg. So I had to increase my t4.

Don’t mind me asking but where do you source your tirisont? What was the reason you ended up adding NDT into your dose?

So yes I am now on 100mg levo and 9.5mg t3. It is not ideal I would rather have gone on 88 t4 than increased.

adin profile image
adin in reply to Ajva

I don't live in the UK, I buy my tirosint from Germany and Hungary(syntroxine). Ndt It's getting more expensive, so that's what made me economie. I'll probably switch to tyrosint +Thybon (t3) altogether.I need two or even three doses of t3

Ajva profile image
Ajva in reply to adin

I haven’t heard of thybon is that a synthetic or natural?

helvella profile image
helvellaAdministratorThyroid UK in reply to Ajva

It is a synthetic liothyronine (T3) product from Germany.

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

From Dropbox:

dropbox.com/s/wfhrlmb5983co...

From Google Drive:

drive.google.com/file/d/11z...

helvella profile image
helvellaAdministratorThyroid UK

Just to try to help!

You keep referring to doses in mg (milligrams). Doses of thyroid hormones will be in mcg (micrograms). One thousandth the dose!

It isn't important here as many will understand. But it does help in convincing others such as doctors that you do fully understand when you discuss things with them.

Ajva profile image
Ajva

no honestly thank you! I keep making that mistake and one day it could be a big mistake. So I do appreciate you pointing that out. Other people may also be getting confused when I say mg.

Thanks again.

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