Activis levothyroxine not working: I’ve googled... - Thyroid UK

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Activis levothyroxine not working

samhda11 profile image
21 Replies

I’ve googled the exact same question because I feel like shit!

I’ve always felt relatively well on activis but feel like something is amiss? My blood work all signals that I’m fine but I have symptoms of hypothyroidism, old symptoms have come back from before I was diagnosed. I’m very good at keeping myself under control but I can’t seem to get well. I definitely think there’s something wrong with the activis brand. Maybe yellow card it ?

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samhda11
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21 Replies
jeanjeannie50 profile image
jeanjeannie50

I take Actavis Levothyroxine and I'm feeling really well right now. I use the 50mg tablet packs. I hope the company that has taken Actavis over haven't started making them.

Do your packs still have the Barnstaple address on?

SeasideSusie profile image
SeasideSusieRemembering

samhda11

My blood work all signals that I’m fine but I have symptoms of hypothyroidism

What are your most recent results for

TSH

FT4

FT3

Thyroid antibodies

If you have autoimmune thyroid disease (Hashimoto's, confirmed by raised antibodies) this can bring fluctuations in symptoms.

If FT3 is low and FT4 high then this suggests poor conversion of T4 to T3 and it's low T3 that causes symptoms, so it's important to test FT3 when testing TSH and FT4 and many NHS labs wont test FT3.

Have you had nutrients tested:

Vit D

B12

Folate

Ferritin

All nutrients need to be at optimal levels for thyroid hormone to work properly. Low levels can bring their own symptoms.

I was well on Levo for 20 years then everything went downhill symptom-wise. I still had low TSH and high FT4, but eventually, after years of being ill, discovered I had severe Vit D deficiency, low folate and low ferritin, plus poor conversion of T4 to T3. So it's worth checking everything, it may or may not be the Actavis tablets that are causing your problem.

samhda11 profile image
samhda11 in reply toSeasideSusie

Hi, all my nutrients are good except vitamin D. What’s interesting is that my mcv is low which indicates iron deficiency but iron is good, it can also indicate hypothyroidism. I think the activis is showing my tsh to be normal (the lab won’t measure anything else if that’s normal) but I suspect it’s put my body into a state of hypothyroid again.

I started activis few months ago and all my symptoms are returning, I’m definitely connecting the dots now.

I do have hashimotos disease, but my TPO antibodies are always very high so it’s safe to say my thyroid produces nothing now, it was over 100 my tsh when diagnosed so I don’t think I get them type of fluctuations anymore

SeasideSusie profile image
SeasideSusieRemembering in reply tosamhda11

Thyroid antibodies fluctuate all the time. Eventually the Hashi's will totally destroy your thyroid and once it's destroyed you may not have the fluctuations any more, but in the meantime you will.

Are you addressing the Hashi's? Some members have found a gluten free diet helps, also supplementing with selenium.

What is your "normal" TSH - what is your level? The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well.

You can't treat hypothyroidism by just looking at TSH, unfortunately very few doctors know this so we have to help ourselves which is why hundreds of us here do our own full thyroid tests if we can't get them done with our GP. It's essential to have FT4 and FT3 tested as these are the actual thyroid hormones, you need to know if you have enough FT4 and if it's converting well enough so FT3 needs to be tested as well.

If you have only been on Levo for a few months, you may not have yet reached your optimal dose, it can take many months for that. Did you have new tests 6 weeks after starting levo? Did you have an increase in dose and another test 6-8 weeks later? Symptoms return when we're in need of a dose increase. How much Levo are you taking?

If you get full tests done then members will interpret them for you.

samhda11 profile image
samhda11 in reply toSeasideSusie

My tsh is currently under 1. I’ve been on levothyroxine for 6 years. I’ve tried every diet possible and nothing budges the numbers of TPO antibodies. I’ve put it down to genetics (auto immune runs in family) and environmental factors kicking it of (3 pregnancies very close together). I know TSH isn’t a good indication but I’m at logger heads with the labs here as they just look at that, really I have a right to request T3 as I’m prescribed it (although I’ve never been able to take it as it makes me ill)

I’m seeing my doctor next week so will have a chat with him. Right now I’m suffering bad with my sinus too so I’m having a double whammy

greygoose profile image
greygoose in reply tosamhda11

Even if you did find a diet that reduced antibodies, it wouldn't make you feel any better, and you'd still have Hashi's.

This is a good article explaining antibodies:

hashimotoshealing.com/under...

You are not alone.Other members raised this issue a week or so ago. I too have not felt up to my usual self and I also take Activis T4. Several of us were using the same batch namely 1493.I have never experienced problems with this brand before.

I am due to collect my next renewal on Monday and will be querying it with the Pharmicist.I won't accept any more of that batch.

samhda11 profile image
samhda11 in reply to

I don’t know what batch the last few months were as I’ve thrown the packets in the bin now. I’m going to the pharmacy tomorrow and asking for another brand, don’t know what to do though as I won’t accept teva and now activis. The pharmacist thinks I’m psycho as it is.

Sybilla14 profile image
Sybilla14 in reply tosamhda11

I collected my Mercury Pharma from boots last week and the pharmacist said that a lot of people have been asking for MP lately. I wonder if that includes people like you who stated to get unwell on Actavis/Almus.

MaisieGray profile image
MaisieGray

I'm currently taking Activis 50 mcg with no problem/change.

I am hoping it was just a hiccup as I will be picking up Activis for my renewal tomorrow.

I too will not entertain Teva even though the pharmacist offers it to me.!!

Noisette13 profile image
Noisette13

I have stopped taking activis also because I’m fed up feeling so ill. I’ve actually got TEVA 100+25’s I’m going to try these for a month and then another brand till I stop feeling 100!!!!

samhda11 profile image
samhda11 in reply toNoisette13

I’m not even risking swapping to teva. They made me feel like I was dying. I’m going to ask the pharmacy for mercury pharma next week

Noisette13 profile image
Noisette13

Oh! Well I’ll see how I get on🤞

samhda11 profile image
samhda11 in reply toNoisette13

I hope you are feeling better soon. It’s a minefield isn’t it ☹️

Noisette13 profile image
Noisette13

I thk all endos/drs should have experienced it so they know what they are talking about instead of guessing!!! Nobody can understand how crap you feel except fellow sufferers!

samhda11 profile image
samhda11 in reply toNoisette13

My favourite are endocrinologist who specialise in diabetes, but have a piece of paper saying they are qualified to sit there and talk absolute bollocks about thyroid when they know nothing about it but the basics! Diabetes and thyroid ? Both part of the endocrine system- but both completely different. Thyroid doctors should see thyroid patients in my opinion, not someone with a phd I could wipe my arse on and a 60 grand a year pay cheque, only to tell me about tsh. It’s insulting to say the least

Rennixon profile image
Rennixon in reply toNoisette13

Two that’s TWO of the doctors at my surgery are hypo.... and they’re the worst ones to see! We have a nurse practitioner who looks at notes ( in an actual scribble notepad!)and tells me my suppressed TSH is giving me heart problems....no hope🤦🏻‍♀️

Afaghieh profile image
Afaghieh

Hi After having done all you can if you think it's the Brand then you should report it to the MHRAunder " Defective medicine"

Rennixon profile image
Rennixon

Oh no! Is this why I’ve felt so ill the last few months? All my hypo symptoms have come back and now the dr has reduced my meds as well!

I was on 150 and now I’m at 125, I wonder if the 50’s have kept me going?

I’ve several packs of 100’s all different lot/batch numbers, but now I’m beginning to wonder if this is the problem? As I’ve felt worse since the reduction. ( I know there’s an obvious correlation here)

I can’t take Teva either, and struggle to get Actavis-goodness knows what I will do now. I have some 50’s left, so I’m going to start taking those, and ask for a different brand next time.

SPD1 profile image
SPD1 in reply toRennixon

This is far too coincidental, too many people are commenting on Actavis for there not to be an issue :-(

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