Yet another Actavis / Accord question

[J675]

Hi Community, apologies if this has already been covered, but I'm getting slightly desperate.

I have been on Actavis 75mcg for several years with no noticeable issues. The last time the brand was changed I had really bad chest pains and breathing issues that was simply dismissed as asthma and I was given an inhaler. I DO NOT have asthma and never have. All my symptoms cleared when I went back on Actavis and my GP made a note on my prescription that this is the only levo that I'm to be given.

A few weeks ago, I started suffering from palpitations, chest pains, breathing difficulties, extreme anxiety, weight gain, puffy face etc., which culminated in calling out an ambulance while having a mahoosive panic attack. All very embarrassing and not something that I've experienced before. I had a bit of an aha moment and checked my thyroid meds, and guess what? The pharmacy had changed it to Accord without notifying me. To say I wasn't happy with them or their unhelpful attitude has to be the understatement of the day.

I'm now stuck for alternatives. Of all the various brands I've tried in the 8 years since being diagnosed as hypo, Actavis is literally the only one I can tolerate. I'm asking for some advice from anyone else who's been Actavis dependant and what you have found as an acceptable alternative now that it's no longer available?

Nb, I've had NO levo at all for 5 days now and feeling a million times better, but I'm concerned that my hypo symptoms are going to kick in soon.

[SeasideSusie Remembering]

J675

The pharmacy had changed it to Accord without notifying me.

Accord is Actavis, it has had a name change and this happened about 18 months to 2 years ago. Stocks of the old branding have now disappeared and the new packaging is all that's available.

Accord tell us that nothing has changed although a few members have found a difference. There are plenty of us that haven't noticed any difference, me included.

It could well be that they have changed their supplier of excipients, or that the amounts of excipients is different, and those that are sensitive to these changes are the ones that have noticed they are having problems.

I have been on Actavis 75mcg for several years

As Actavis/Accord have never made a 75mcg tablet, how is your 75mcg made up? Are you taking 50mcg tablets and cutting one in half, taking one and a half tablets a day? Or are you alternating 100mcg/50mcg to average 75mcg? Or are taking a 50mcg plus a 25mcg tablet (the 25mcg will be a different make)?

[helvella]

It isn't entirely clear whther toyou are aware that Actavis has been owned by Accord for several years? And they only siwtched branding of Acatavis levothyroxine to Accord levothyroxine early 2020.

So Actavis, labelled as such, no longer exists.

You are not alone in identifying issues with the produce since it was re-branded/re-labelled - but it is not 100% certain the change in product and the change of branding were related. Obviously seems likely. (I noticed no difference - it is what I take. Seems only to affect some of us.)

Accord have said there have been no changes.

Please submit a Yellow Card report (see Pinned Posts).

I can understand the pharmacy thinking it was the same product - it has the same licence numbers which should mean that it is the same product.

[J675 in reply to helvella]

Thanks for the replies so far. I've been alternating between 50 one day and 100 the next. It's definitely not the ideal way of getting my 75, but it hasn't caused any issues so far and I've been stable for years.

While my head totally agrees that it's only a rebranding exercise and it should be exactly the same medication regardless of what it's called, my body is saying otherwise. The ONLY change in my diet and life recently has been the levothyroxine brand. And now that I'm not taking any and my symptoms are improving, it's likely to be the levo. Although I'm quite open to any other suggestions.

Ps, yellow card done this morning.

[SeasideSusie Remembering in reply to J675]

J675

If you are on a PC, look to the right of your opening post and you will see other related posts, have a look through and you should find other members who have experienced problems after changing. If you are on another device you may need to scroll down.

You should speak to your GP about getting a new prescription and ask that he puts "No Accord brand" on the presription due to your experience, if he wont do that then discuss with the pharmacist where you normally take your prescription and ask that the Accord brand is no longer given to you. If pharmacist wont oblige then always get a paper prescription so that you can ring round other pharmacies to ensure you get a different brand.

Be aware that all these are made by Accord so you should avoid them all:

Accord

Northstar (Lloyds Pharmacy)

Almus (Boots)

[SlowDragon Administrator]

A few patients swear Accord is slightly different to Activis…. But ingredients list is identical

Perhaps you were in need of dose increase anyway

Alternative

You could request liquid Levothyroxine

See Gov guidelines on different brands

gov.uk/drug-safety-update/l...

[J675 in reply to SlowDragon]

Strangely, I'm feeling better on NO levo rather than how I was feeling on the Accord. That's def not the same as saying I feel OK though - I'm just not feeling quite as awful!

I've asked my GP about trying the liquid levo as anacdotedly there seems to be fewer bad reactions to it. While they haven't outright refused it, I've been told that I need a very good reason to get it due to the costs.

I've started looking into the private prescription route (and put my lalala fingers in over the costs) and have already ordered a full home testing kit, as opposed to the limited ones that I have on the NHS.

[SlowDragon Administrator in reply to J675]

Extremely common to initially feel better when stop levothyroxine…..it doesn’t last

Can either feel slowly worse as become more hypothyroid longer not taking levothyroxine…..

But some of us become extremely unwell after 7-14 days without levothyroxine (I was definitely in the 2nd group)

[sy28]

Ask your GP to prescribe oral solution Levothyroxine - I've been prescribed this following Activis/Accord rebranding. The excipients in Levothyroxine tablets were making me ill. It's worth requesting a change from Levothyroxine sodium tablets to oral solution to see if this helps. Hope you feel better soon.

[J675]

A quick update on my original post as a lot has happened in the past week.

I've had my blood test results back and after eight days without any levo, it's not a huge surprise that my T3/4 levels are very low, although the ratio looks OK to my naive eyes at 3.8ish. Iron and D levels are low, which I am surprised about as I supplement them both. I think I'm going to have to adjust what I take, what I take it with and and when I take it as the absorbtion rate obviously isn't great. B12 was very high without over supplementing, which is a bit odd. And I now have a Hashi diagnosis to add to the score card! Although it was an early morning fasting test, I'd only stopped the multi vits that contain biotin three days beforehand, so that's no doubt skewed a few things.

My GP has actually been really good (and hasn't been too narked with all of their time I've been taking up recently) and has given me a prescription specifying Aristo. I haven't tried this brand before and I wanted to give it try as literally all the other tablets I've tried other than Actavis I've reacted really badly to. They've also said that if Aristo doesn't suit me either, then I can have liquid levo instead. AND I've bought some liquid levo privately with an e-consult as an emergency plan B if I need it - which hopefully I won't.

I'm still feeling absolutely exhausted and generally crap, but at least I'm not calling out the emergency services over anxiety panic attacks any more! I have a few more answers, a lot more knowledge and a supportive GP, so that's all pretty positive. I'm also amazed at how much I've learnt about hypothyroidism in the past couple of weeks: until a few weeks ago, I've never really had any problems (that I've been aware of, anyway) since being on my stable Actavis dose and I've just been one of those people who take their pills and don't think too much about it.

By eck, this thyroid stuff is complicated.