Morning symptoms after taking Levo

[Wired123]

Hi friends, my 70 year old hypo mother is having some trouble over the last two weeks. She’s been on Levo for 30 years and her last blood tests were ok. I’m also hypo and have been on these forums a while so I’ve learnt a lot about blood levels on here.

Anyway, I don’t have her bloods to post up here but I was happy with them last time she had them done at her GP.

Over the last two weeks she’s suddenly getting heaviness/uncomfortable in the chest area within 10 minutes of taking Levo. She’s been on the same brand and dose for well over a year so nothing has changed there.

I thought Levo is slow acting so I would be surprised if the meds are causing a reaction so quickly but thought I’d check for anyone else’s experiences.

She’s also complaining of extreme fatigue for which I will ask her GP to do bloods again in case she needs more Levo. She’s had a trial of T3-T4 combo last year but couldn’t tolerate it and it made her feel worse.

[crimple]

Wired123, which brand of levo is your mother taking, has this changed!

[Wired123 in reply to crimple]

Same brand for years: Accord

[crimple in reply to Wired123]

I have taken Accord for the last 12 years at least, Teva makes me very ill because of the acacia powder filler.

I came back from holiday feeling rough, hypo symptoms coming back and a headache and no energy and things got worse. I was due medication review so had bloods done. My T4 level had dropped from 65% through range to 32% through range!! I take 100mcgm Accord levo and 15mcgm Sigma Pharma Lio. The t3 results were within my normal range.

So I posted on here about 2-3 weeks ago and helvella got back to me to say others had issues with 100mcgm Accord not delivering the correct dosage!! Like helvella and others I sent in a yellow card to MHRA. I have now got 100mcgm Vencamil tablets Levo and have taken them for 2 days so it will be a while before I feel better.

Do hope your Mum improves

[Wired123 in reply to crimple]

Interesting that others have had issues with Accord. Has the manufacturer accepted some batches are sub-optimal?

I also take Accord 100mcg (and incidentally 15mcg Sigma Lio per day). I’ve felt quite tired and lethargic this last week. Maybe I too have the same issue.

Would you know how to identify sub-optimal batches of Accord Levo?

[helvella in reply to Wired123]

The Yellow Card report I made was dismissed by the manufacturer.

And I have switched to Aristo Vencamil (luckily the 100 replaces the 100 Accord).

[Wired123 in reply to helvella]

Do we have any more info of how long this has gone on for or which batches were effected?

[helvella in reply to Wired123]

There have been several posts - shame search facility is so poor!

I'll try to have a look at my email records but not tonight.

[crimple in reply to helvella]

I noticed that too helvella, when looking for other complaints about Accord. The manufacturer got back to me asking me to send the rest of the packet. I told them I had to use the rest of the packet whilst waiting for replacement meds and sent the Lot no. I then had to open my next packet of Accord and can't say I noticed any improvement so I will send that Lot no and the meds.

[Fifteen in reply to helvella]

Is it possible to improve the search facility? I find it very disappointing and frustrating.

[helvella in reply to Fifteen]

You might not believe it, but this version is an improvement on what went before!

Sometimes you do better using an external search engine.

For example, with Google search, try this (replacing ANYTHING by whatever you are want to find):

ANYTHING site:.healthunlocked.com

Or, as a link:

google.com/search?q=ANYTHIN...

[Fifteen in reply to helvella]

Thanks. I use Google for every other search. Did not know about this - it will be useful.

[helvella in reply to Wired123]

Sorry - I have had a quick look but cannot find the information - at least two, probably three years. But no batch numbers in what I can readily find.

What seems odd to me is that a small number of us have reported issues - while others have been absolutely fine. Which suggests it might not be whole batches that are affected. Or that the issue for some reason only affects some of us.

[Wired123 in reply to helvella]

Yes fair enough, could be an intermittent manufacturing issue or indeed only affecting certain people.

It’s always hard when you’re Hypo as there’s so many variables that can throw you off so I try to keep meds (brand, dose, timing), diet and sleep as consistent as I can, work stress is also a factor and no one can foresee workload where I work so it’s always up and down.

I also know I felt “hypo” for a month after my first and second covid jabs and then went back to normal. At that point I thought it was potency issue with T3/T4, but after 2 jabs I’m confident it was the covid jab.

[helvella in reply to Wired123]

I've switched to Aristo Vencamil now - and my current perception is that it suits me and appears very consistent.

Of course, the next pack could prove me wrong!

[Wired123 in reply to helvella]

Fingers crossed for you, thanks for all you do on this forum and all the great info you provide

[Wua13262348 in reply to helvella]

Could it be inappropriate storage/ temperature ? Are some wholesalers or distributors , or whatever, maybe exceeding the storage temperatures, perhaps? Maybe being stored next to a heater, in some places?

I sent a blood test away today. Dodgy with current heatwave. Today, in Scotland, however, much, much cooler than it has been. Was worried when took it to the post office, it would be boiling in there. Post office was freezing cold. Air con. at full blast. I didn't think they even had any round there.

Could explain why some tablets seem okay and others not, even in same batch number.

In winter, in my pharmacy , I've noticed the use of portable heaters where dispensing and storing of made up prescriptions awaiting collection. At the time, it has made me wonder if medications in the vicinity of the heater could be being negatively affected.

Just a thought.

[helvella in reply to Wua13262348]

I don't think we'll ever find out. Would be great if they could incorporate "tell-tale" detectors. Imagine two layers of wax with well-known melting points each of which contains a compound such that if the wax melts, the two compounds react and created a pigment or dye.

Easy enough to do with electronics - so things like insides of vans and warehouses can be monitored. More difficult as the scale goes down from pallet to box to carton to individual pack!

I think they do monitor for things which positively need to be kept refrigerated. But levothyroxine only really needs to be "not hot". And likely gets ignored.

[SlowDragon Administrator]

would suspect it’s the Accord

Get new prescription

Either different batch of Accord or try different brand

And yellow card the current Accord

Perhaps get the batch number and come back with new post asking members if anyone else noticed issues with this batch

[Wired123 in reply to SlowDragon]

Do we have any more info of how long this has gone on for or which batches were affected?

[SlowDragon Administrator in reply to Wired123]

helvella going to see what info he has in the morning

I don’t use Accord ….but had noticed there have been few posts recently re possible issues

[crimple in reply to Wired123]

Wired123, I think this has been going on for a while, possibly 12 months looking at my bloods for June 2022. Because there had a been a change in the lab ranges used I didn't notice and I wasn't aware of my T4 % through range being very low then too. I certainly didn't feel as bad then and it was obviously an intermittent problem. I do wonder just how many people there must be who are affected by this as Accord is usually given out by Boots.

[Wired123 in reply to crimple]

Interesting you say that, I think there have been a few times I’ve felt tired and lacking energy whilst everything else has been consistent (diet, sleep, exercise). It’s worrying the manufacturer is dismissing yellow cards when there’s clearly an issue somewhere.

I’m reluctant to change brands because that brings another variable into the mix.

[crimple in reply to Wired123]

Wired123, I am now on day three of Vencamil x 100mcgm and hope that in a week I will be back to something like my usual self as we are going away. The hideous headache has gone and in spite of the muggy weather I have a bit more energy so fingers crossed.

[Wired123 in reply to crimple]

That’s really positive, will be good to see if this works for you in the long term. However given we are all different what works for you may not work for me.

I can’t risk changing brands at the mo as my mum also has an operation later this month so need to keep it consistent but will be getting her bloods done before the op so that her op is not compromised. If it has to be delayed until thyroid levels are better then so be it.

[Jackobee in reply to Wired123]

I found I wasn’t as well on Accord, or Actavis as it was then called, many years ago, possibly as much as 10 years. I’m fine with Teva, Wockhart or Mercury Pharma.

[Fruitandnutcase]

I’m sure it’s unlikely but it is worth getting her doctor to check her heart if she is having heaviness in the chest area and is extremely tired - just to be on the safe side?

[Wired123 in reply to Fruitandnutcase]

She’s had full heart checks at hospital over the last 2 months inc CT and ECG. All clear but I am keeping it in mind anyway

[Fruitandnutcase in reply to Wired123]

That’s good both that she’s been checked and that you are keeping it in mind, hope she feel better soon.

[gabkad in reply to Wired123]

Maybe an echocardiogram would be good. Or imaging with dye. Don't know if the CT scan was done with dye.

[Santolina]

My GP misdiagnosed my hypothryoid issues for years. I bought Dr Sarah Myhill's book on thyroid, re-tested using all five thyroid panel indicators and found that I was under-dosing. I also began taking the supplements she recommended. Anxiety plays a huge role here as many of us know, it's far worse in someone 70 or more. However, you might ask the pharmacist if there have been any complaints about the specific brand used. This was a huge problem to me several years ago - my pharmacist said that it can be a generic 'availability' issue.