is levo making me ill?

[Mag999]

I posted earlier this month as I had a gap in my prescription so went without for a week, then started back on 75mcg as I had been. Since then I’ve felt terrible, uncontrollably crying, exhausted, nausea, diarrhoea and freezing cold with drenching sweats.

I have had two nasty viruses on the last 2 months but I feel like things have been significantly worse these last few weeks. I dropped to 50 mcg in case I need longer to adjust, and now I’m wondering if I go lower.

mom on wockhardt and accord as I can’t tolerate Teva, but I do feel my stomach is reacting like it did on teva.

it’s so frustrating as I’ve had lots of health issues and whilst I’m not severely hypothyroid I have has borderline tsh for years and very low end normal t4/3 and starting levo went really well, my muscles relaxed for first time in a couple of years and I began to get energy back and manage whole days of activity. Now I’m back on the floor and I don’t know what to do.

I need a blood test as they haven’t retested yet but with the fluctuating doses and gaps I don’t know if that will help yet.

im not sure I’m absorbing much given the stomach upset

[arTistapple]

Oh sounds like you have made a similar mistake to me. A break in my meds and lowering them back to before I messed it up and now it’s unrealistic to get tests done without letting the six to eight weeks to pass and let things settle. I am champing at the bit and very annoyed with myself. Every day I want to change my meds - up them. I am so annoyed with myself. Every day on waking (if I manage to sleep) it’s the first thought. Symptoms not pleasant. Wiser advisors will be along, so don’t change what you are doing until you get better advice!

[GlowCoach Administrator]

There's really no point testing unless you have been on a stable dose for 6-8 weeks unfortunately.

Sounds like the week off Levo has affected you badly and you just need time to resettle on the same original dose. I wouldn;t change anything as what symptoms you have are all hypo symptoms.

[tattybogle]

a week of nothing takes quite a while to recover from . that's just the way it is . you can expect all sorts of (sometimes very unpleasant) symptoms to come and go untill your body has resettled itself to a stable dose.

it's not good idea to fiddle with doses during this time , other wise you just prolong the period of instability .

I strongly suggest you stay on original dose of 75mcg for at least 6 weeks and then do blood and re-asses how you feel at that point.... unless you had good reason to believe that your previous dose was a bit too much (ie. blood test done before you stopped which showed T4/T3 significantly higher than 'your' normal , or lower TSH than your 'normal , or symptoms of over medication ) in that situation it would be sensible to restart at a very slightly reduced dose . ie. 12.5mcg less.

But if that was not the case , then continue at 75mcg and wait for the rollercoaster of your body's adaptation to stopping / starting to slow down before making any more changes. especially relatively large ones such as dropping by a whole 25mcg or more.

[Mag999 in reply to tattybogle]

the trouble is I only started in august but haven’t had a blood test yet so I have no idea where I am at I’ve just been told to put it up every few weeks so I did get to 100 at one point but then as the delay on blood tests is so long I was put back down again.

All a bit of a shambles

[tattybogle in reply to Mag999]

a 'bit' of a shambles is a polite way of putting it .. whoever told you to keep putting it up every few weeks without doing any blood tests first to see the effect of the dose you were on , needs a spanking . That's just asking for trouble .... as is reducing it again without testing first . You need at least 6 week to know what any dose is like.. often longer.

Thyroid hormones (and the bodies timescale to adjust itself to them) need treating with respect. They should be adjusted slowly , carefully, in small amounts at a time. with enough time given to allow the body to settle and respond fully, before any further adjustments are made . It's very sensitive system , which doesn't like having it's levels jerked up and down.

[1tuppence]

Has your levothyroxine been the same brand since August? If it has changed to different brands, that could be having an effect.....if it hasn't changed, then it's possible that brand is one that doesn't suit you?

For 5 years my levo brand was exactly the same, each month..... and I became stable on my settled dose. This year I realised I was feeling ill....subtle changes at first, then noticeably awful. The penny finally dropped for me in November this year... I asked here about differences in brands..... went to see my GP ( Yes, I know I as lucky to get a face to face appointment) and now the brand that originally suited me so well is written on my prescription..... and I am feeling stable again.

Wishing you well.

[themomx6 in reply to 1tuppence]

i had the same problem as you did----not all brands agree with me. only the Lannett brand has fewer additives and does not give me the side effects. was wondering if that is the same brand that doesn't give you side effects?

[1tuppence in reply to themomx6]

I wonder just how many people who are feeling ill despite the levothyroxine, are suffering due to the fillers and don't realise that's the problem, and not the levo itself? I was stunned to realise just how ill I became with brands that didn't suit me. The one that suits me is MercuryPharma.

I hadn't heard of Lannett, and am pleased you've found a brand that suits you. It's amazing what a difference the right brand can make, isn't it?

[Mag999 in reply to themomx6]

I’m just not sure anymore! I know wockhardt seemed fine and teva upset my stomach and didn’t seem to work as well, back to aching muscles and fatigue

This time I have accord 50 and wockhardt 25.

I’m trying split dose but hard to fit in vitamins and iron

Worst but is the crying and very low mood but when you have low thyroid and no female hormones either plus vitamin and mineral deficiencies it all becomes a blur.

1 step forward two back at the moment

[rustyempire]

Do you have access to a compounding pharmacy? They can make Levo for you without all the fillers! It may be easier for you to manage. But do follow the previous advice re no Levo for a week..

PS have you considered trying NDT (natural dessicated thyroid) as an alternative to Levo?

An interesting read on compounded Levo and the fillers that are present in common brands

palomahealth.com/learn/comp...

[tattybogle in reply to rustyempire]

i haven't looked , but since that is an American site ,the fillers/ brands listed will not be what we have here in uk. they have all sorts of stuff in including colours which we don't have. Helvella has a list of UK Brands and exipient's / fillers , you'll find it somewhere in his "Vade Mecum for Thyroid " .. the link to that is in "pinned posts"....(click on 'posts' at top of this page).

[helvella in reply to tattybogle]

tattybogle

It's my thyroid hormone document!

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. It is sectioned by UK - rest of the world, and by T4, T3, desiccated thyroid, etc.

And do keep up to date. I edit it frequently - sometimes trivially, sometimes extensively. If your copy is more than a few weeks old, please download it again. (You must download - not just view in a browser - for the Table of Contents to work.)

From Dropbox:

dropbox.com/s/wfhrlmb5983co...

From Google Drive:

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

[tattybogle in reply to helvella]

Ta muchly

x

[rustyempire in reply to tattybogle]

Thanks for mentioning the pinned post from helvella! I know the UK differs from US (I’m in Canada).. My point was to raise awareness that there are fillers that many don’t tolerate. And the OP may not know of this ☮️

[helvella in reply to rustyempire]

Effectively the UK does not have compounding pharmacies.

We have some specials manufacturers - which are similar. But they tend to produce products for which there is no market equivalent. And they are very expensive.And getting a suitable prescription is a problem in the first place.

Some might wish to use specials laboratories but a lot of people can avoid specific excipients by careful checking of the standard licensed products.

[rustyempire in reply to helvella]

The UK has access to WAY more Levo RX options than we Canadians I’m afraid…and the US as well. We have to go to a compound if our Levo is causing issues. Or try to get NDT (only one manufacturer available for that too 😑).

[helvella in reply to rustyempire]

I think you have more than you used to have! Including Tirocap (Tirosint) which might help some.

Canada levothyroxine

[Mag999]

thanks for all the info, I do feel like it’s upsetting my stomach more than when I first started.