ACTAVIS. SIDE EFFECTS? SYMPTOMS?: Hi Everyone... - Thyroid UK

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ACTAVIS. SIDE EFFECTS? SYMPTOMS?

Hi Everyone,

has anyone who is taking Actavis Levothyroxine noticed anything different at all in recent weeks/months??? however small and may have put it down to something else.

I have been taking Actavis Levo only at a dose of 150mcg a day for years with no issues at all and felt absolutely fine and well until around 12 weeks ago then all of a sudden i developed muscle twitching all over, arm and leg tremors, leg weakness, blurred vision, DRAMATIC hair loss, thinning eyebrows, joint aches, raised resting heart rate and palpitations whilst relaxing, breathlessness, itching scalp and body.

Someone has Privately Messaged me today to let me know that they are on Actavis and have developed blurred vision, Dramatic hair loss and leg shaking/tremors, after previously experiencing no issues at all with Actavis that seems too coincidental to me, plus another member on here feels that there has been a possible change to the Actavis constituents as they have noticed a change as well.

I take my dose every night at 11.30pm and what i am finding is that like clockwork that when i reach around 8pm in the evening the tremors die right down and virtually disappear until i take my next dose at 11.30pm and then hey presto symptoms return, the other individual who PM me is finding exactly the same, Coincidence?? I think not

I'm just wondering if anyone else who takes Actavis regularly has noticed any of the above symptoms or any other issues at all?? if you have it would be greatly appreciated if you could make it known.

Many thanks indeed.

116 Replies
oldestnewest

I believe I contributed to previous threads about this by yourself and ianessex

I hadn't experienced any problems but I do have a large stock of tablets as I am prescribed more than I take. As an experiment I have been using them out of order and just finished a trial of batch number TC1473 of the 100mcg dose tablets, I used the whole packet - 4 weeks - and had no adverse reaction nor did I notice any difference at all. Tomorrow I will start my most recent batch dispensed last week - TC1503 and will let you know if I notice anything.

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Hi,

someone PM me earlier about having developed blurred vision, dramatic hair loss and leg issues from about 3 months ago, they have been on Actavis for donkeys years with no previous issues, seems a bit coincidental, just thought i would pop the post up to see if anyone else had developed any similar issues to mine since the last post about it as different people will be using different batches since the last post.

many thanks.

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I too have been suffering symptoms over the last couple of months and have been perhaps wrongly questioning my T3 LIothyronine,not thinking it could possibly be my Actavis Levo, which I have been taking for years.

However,I have some of the symptoms you speak of which have been depressing me of late. I have been feeling headachy which is something I don't normally suffer.My energy levels are down,muscular pain increased ,breathlessness,very itchy skin including scalp,body,feet and hands.

I had been wondering about my T3 which was in a brown bottle with. PL that was loose with it and also torn.!! That is usually sealed around a Mercury Pharma bottle of 28 tablets and doesn't make sense to me why I would have 28 tablets suddenly not in original bottle.......It doesn't give me confidence in the latest pharmacist.

Back to Actavis .....my latest batches of 100mcgs are TC 1477 Exp 11/ 2020 and

TC 1493 Exp 01/21.My 50 mcgs is TA 1816 Exp 08/2020

If others also have problems with these batches it would help to know,as it is really concerning me and I thank you for raising the issue.

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Hi There, thanks for your reply,

same batches this end!! you, myself and the other individual who PM me have all started symptoms in last 3 months!

We all have some of the same symptoms, we are all different and react in different ways, but it does seem too coincidental?

Have you by any chance noticed that as you approach taking the time to take your new daily dose that your symptoms have died down and then when you take your new dose they flare up again?

I forgot to mention this before but in the evenings now i start to become even more tired than usual around 9pm and find it difficult keeping my eyes open if im sat watching TV on the sofa, have to splash cold water in my face to try and stay awake, i never ever had that issue before.

by the way i would never, ever accept any medication from the chemist is it is loose or torn or not as secure as it should be, i always open the packet and check medication before i leave the chemist.

Thanks.

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SPD1

Can you please list the batch numbers of those tablets that have caused symptoms.

I have 6 boxes of 100mcg and 6 boxes of 50mcg, all different batch numbers, and I can look through to see if I have any of those same batches and try those.

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Hi,

100 batches

TC 1493

TC 1477

TC 1489

TC 1494

50 Batches

TA 1823

TA 1831

TA 1838

TA 1730

I know you haven't had any issues so far and Bantam and Partner who take Actavis haven't either but i don't know what batches they have tried.

I definitely think there has been some change to the tablets as Ian essex mentioned a difference as well as Marfit above and the individual who also PM this morning, i think some of my symptoms are related to the change but i question whether all my symptoms are down to the Tabs, a bit baffling.

Thanks Susie.

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Batch I have just finished are

TA 1845 and TC 1492

Just picked up

TA 1845 & 1850 and TC 1508

Husbands are the same.

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thanks for listing those

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SPD1

I have TC1493 so I will start that tomorrow seeing as my latest one isn't in your list.

I also have 3 of the 50mcg batches listed but wont start one of those until I've seen how I get on with the 100s .

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thanks Susie, will be interesting to see how you go on.

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SPD1

I will have to delay my trial.

I have just been put on blood pressure tablets (oh joy, another problem, another medication :( ).

It would be foolish to start a new medication and change to a Levo batch known to be suspect at the same time, so I will use one of my boxes of Levo that has a batch number I've been fine on before (1473).

I'll follow this thread to keep up to date with it, and see how I go with the BP tablets before trialling the other box of Levo.

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Hi Susie,

sorry to hear about your blood pressure, hopefully you will be ok on the BP medication, it makes total sense to hold starting the Actavis trial.

I am really down about this, it appears there is a possible issue with the Actavis tablets but the i would be surprised if the volume of my issues are all down to the tablets as no one else has anywhere near as many symptoms as myself. :-(

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Hi. I had a post on side effects and have just read yrs. I have batch 1493 and 1489 for 100’s. I wonder is this is causing my painful joints!!

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Hi there, do you take 100mcg as a daily dose and nothing else?

I assume you have been on Actavis for a significant period ? with no prior joint issues prior to opening those batches?

Which joints are you struggling with?

Just joints and no other problems ?

Did you check my list of symptoms to compare? sometimes its easy to over look or put down to something else.

thanks.

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I have varied joint aches and mood changes( so my hubby says!!) bad sleep patterns and not being able to stay awake some afternoons. It all varies daily. I take 100 daily actavis and have 25 mercury as stopped TEVA

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hi,

and this has all come about since your very recent batches of Actavis, seems a tad coincidental doesnt it.

Think there is more going on with me though given the number of symptoms, as far as recent joint aches are concerned i'm getting them in fingers, knees, toes, wrists.

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To be quite honest I haven’t checked on batches. Mine is fingers, lower back, hip/groin, knees and feet. Falling apart lol. Got checked over for RA and gout n bone cancer but all clear so must be meds

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Its too coincidental, i remember way back years ago when i was up and down on dose trying to find the right level of dose that it was affecting my joints, lower back as well and achilles and bearing in mind i have had absolutely no joint issues whatsoever for years to then all of a sudden start with them 10 weeks ago is far too coincidental.

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Have you had your calcium level checked ? if your VitD is low it should have been done.

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Calcium just tested by NHS last week

Serum Calcium 2.3 mmol/L but no range given.

serum Adjusted Calcium conc 2.42 (range 2.20 - 2.60mmol/L)

reported as normal by NHS but i have no idea whether "Normal" is where it should actually be for me ?

Vitamin D reported as insufficient by Medichecks 4 weeks ago

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Calcium is fine but if you are taking VitD supplements keep an eye on it as you don't want it going over range.

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Thanks Bantam

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I am so glad that you have queried this,as I have felt a bit stressed wondering what was wrong with me.

I always take my meds at around 7.00am and have breakfast approx 8.00am.

I have always been a " morning person" getting on with the chores and resting after lunch. However,it is one of the noticeable things that I don't have that same A.M energy these last few months .I too have nodded off in front of TV around 9.00pm,which annoys me as then it is hard to get to sleep when going to bed.

So,not sure whether that is down to the thyroid or the standard of TV programmes at night !!😱🙆🏼

Yes, you are right about meds.I did check to see that Ihad Actavis ,but T3 has been a bit variable.I'm thinking of asking for Morningside permanently,as they are foil wrapped blister packs.I reject Teva.

I am due to collect my next prescription in September and will report on any further changes or concerns.

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hi,

this nodding off in the evening, is that something that was not happening before you noticed these other changes? ie, were you managing to stay awake quite easily until bedtime? i had no issues at all staying wide awake watching TV till 12 midnight most evenings right up until these issues started with me, i have never, ever had to splash water on my face to try and stay awake whilst watching the box! My sleep pattern is also all over the place, i am waking up in the early hours and then struggling to get back to sleep even though i am tired.

Have you noticed any additional hair loss or eyebrow thinning, i would imagine you would say though if you had ?

Do you also find that as the day wears on and you get further away from the morning when you took your dose that the symptoms like breathlessness improve ?

Thanks.

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I have always been missing the outer third of my eyebrows, a definite symptom of being hypo for me. I do lose hairs which show up having gone grey.We would be amazed how many it is natural to lose anyway according to my hairdresser,but I still have a good head of hair thankfully.

I usually head for bed around 10.30 pm these days.There was a time when I finished the day with a nice soak in the bath which I now miss very much.

Because of weakened muscles I can no longer get out of the bath.

Showers will never replace that little luxury.....not the same,but the only option.

I haven't given thought to the breathlessness regarding time of day though.I am less active in the afternoon.....watch a lot of quizzes and do crosswords etc.

I can nod off after lunch or in the evening which could be age,thyroid,boredom or a combination of all three.......If BBC want to charge the over 75s for their TV licence I'm not objecting,but do hope they can limit the number of repeat programmes in a day........it's getting rediculous and not helping........a definite reason to nod off !! Seriously though I think it's medication.If I don't get the same brand of T3 regularly,I may turn to NDT.

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How long have you had the weakened muscles for?

Getting older has nothing to do with me all of a sudden in the last 10 weeks struggling to keep my eyes open in the evening past 9pm.

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Muscular pain has been a major problem since before being diagnosed in 2002

I was away in Lymington on holiday and struggled to walk up to the high street from the harbour.It took two lots of blood tests before it was admitted that I was "a bit hypothyroid" I was given 50mcgs levo thyroxine ....at that time it was all Goldshield. My muscle pain completely disappeared .However, it came back again,but was left on 50mcgs for 10 years......(I have already posted this before)

It wasn't until 2013 that a member here recommended her Endocrinologist to me who I now see. At present I take 100/75 mcgs levo alt.days and 10mcgs T3.

I now have osteoarthritis in my knees so not going to get rid of my pain now.

I do resent that I was under medicated for so long,but wasn't a member here in those early days. We have much to be thankful for that we have HU TUK to consult with thyroid problems.

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Hi Marfit,

When i first was diagnosed as Hypo i had all sorts of joint pains and aches until i found my sweet spot on 150mcg a day of Levo, guess what, all my aches and pains were a thing of the past !!!

I am sooo down about all of a sudden i am experiencing so many symptoms after being so well for so long!

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Can you pm me with details of the endocrinologist please.

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Hi Marfit, could you kindly PM the details of the Endocrinologist you see please, thanks.

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I have been on 100 Actavis for many years. In January I woke with a terrible spasm in my thigh, which continued for about 2 hours and I am still left with pain in my thigh. Other symptoms, slight numbness in soles of feet, various leg and thigh cramping (not as bad as the first time), weird feelings in calves, as though they are swollen, but they are not. I was concerned I had some neurological problem. I have changed to Mercury Pharma and those symptoms have gone!! The problem is that I have stockpiled a few months supply of Actavis because of Brexit, but doubt whether I will ever use them. Actavis ingredients appear to have changed, in my opinion.

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That is interesting.Are you saying you have Mercury Pharma Levo? I've never used that ......only MP for my lio T3 .I was given a pack of Mercury Pharma 25 mcgs in with a prescription when I saw my Endo, but put them aside as I didn't think it good to mix wth my usual Actavis from my GP.

It would be interesting to use them on their own for a week 4x 25mcgs / 3x 25 mcgs alternate days = 28 tabs over 8 days .....I estimate !!

That should be long enough to notice any change I think........thank you for that info.

I will report back.You have obviously suffered,but So good that you have found a solution that works for you.

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I havent found a solution, i will know try Mercury Pharma and see if there is any difference or improvement at all ..

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I have read your posts with interest. I have been on Mercury Pharma Levo for a couple of years and refuse other brands. I took Actavis/Almus earlier but I had strange neurological symptoms, which at first I thought may have been from my ft4 being over range however I decided to move to MP. I’ve never had these strange symptoms on MP even when my ft4 was also over range but, when I switched, I needed to increase my dose as MP seemed weaker than Actavis. This was my experience just wanted to mention this in case it may happen to you and impact on your conclusions.

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Hi,

thanks very much for your reply, that's Very interesting indeed!

when you say you took Actavis earlier when was that exactly and for how long did you take it for?

Did you take 100mcg or 50mcg tablets?

What Neuro symptoms did you experience?

Thanks.

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there appears to be an issue with Actavis all of a sudden, really annoying and frustrating to say the least!!

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Sorry Marfit, i just realised you were replying to Pepekins :-)

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I was on MP Levo for years and no issues. Pharmacist gave me it all in 25's (100/125). As time went on I found out that 1x100 was cheaper than 4x25 so had a pang of concience and got pack of 100's though still had loads of 25. But I did find 4x25 were not the same as 1x100! So I went back to all 25's as soon as I could. Then remembered that was the reason why the pharmacist gave me all 25's! But just be aware that I found a difference so stick just to 25's

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So mad......did a reply which has disappeared.However, it is very interesting about 1x100/ 4x25s.I have asked for my preferences to be put on screen at my pharmacist beneath my surgery as I was getting a mixture of what ever was in stock lately.....Actavis...MP T3...... Morningside T3... ( objected to MP Lio loose in brown bottle) couldn't understand that when 28 tablets normally come sealed in white bottle with PL sealed around it!! The odd pack of MP 4x25s came from a hospital check up with my Endo in May.( Boots Pharmacy in Outpatients).......... Idon't go there again until November

So it goes on.........

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Yes i agree, i have been on Actavis for 15 years with no issues at all and then all of a sudden 10 weeks ago all sorts of symptoms, its tooo coincidental!!!

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I have to admit that I hadn't even considered that Actavis Levo might be causing problems having been prescribed it for so long.I was sometimes blaming the weather when it turned too hot for me as I was lifeless,which has meant neglecting chores. However,I am now keen to see if a change of meds might help. Oh to have permanent confidence in our treatment.!!

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I have also been experiencing almost numbness in my feet and calves and right forearm as well, always when i am either lying down on the settee or in bed, its bizarre.

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I take Actavis. I was on 100 Mcg but it’s now 75 Mcg split into a 50 and a 25 and I’ve been getting headaches, which is unusual. I don’t have notes of my 100 tablets but the ones I’m currently taking for the 50 are TA 1819 and expiry 9/2020. The 25 tabs were put in a bottle and it says exp. 07/2020 and then 85334 I presume that they are Actavis as that is what I had asked for but I am now not sure. I have been feeling utterly exhausted for months now, more than usual, and presumed it was my fibromyalgia. I am seeing a new GP at my normal practice to ask for more blood tests as I am not happy with their decision to drop me to 75 mcg. I will also have my next blood test early as recommended here.

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Actavis don't make 25mcg pills, the other brands do . So they're deff another brand.

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Hi there,

i didn't think Actavis did a 25mcg tablet?

I would seriously question whether the 25mcg are Actavis because as far as i am aware Actavis don't make a 25mcg tablet, you need to check that.

Your symptoms could well be because you have dropped down from being ok on 100mcg?

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Yes, I agree, but it’s inky recently that I dropped down. The tiredness started a few months ago.

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Until I read your post I thought nothing about the differences I have noticed in my self these last few weeks. I’m amazed that others are having the same symptoms that I would have thought nothing of until I read this.

I have always been on Actavis, the last packs I was given were by Almus.

But I finished those a couple of days ago and my new packs are Northstar.

Checking the leaflets they contain the same ingredients and are probably from the same print-run as they are all by Actavis.

However, I too have been getting tired and yawning by 9:00 (unusual for me) even though I stay up until my cats come in around the early hours. Up until recently I had no problems staying awake until 2am.

My hair is the worst it has ever been, more is coming out and as for my blurry vision, well I was putting that down to too much iPad. I also had started to think they had got my reading glasses prescription wrong.

My legs have never twitched all night long before the last few weeks either, and I have had itching on head and body same as you. I thought that was because my cats seem to be itchy from summer lazing in the garden. I can’t find evidence of fleas on them and they are treated regularly with Advantage.

I have yet to check the batch number having only just found an old box in the recycling. (edit) they are batch TA 1827

The new boxes of Northstar are TA 1848. I have just started taking those.

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Hi there,

thanks for your reply. this appears to be too much of a coincidence indeed, is there any chance you could just have another look at the symptoms (just below) i have been experiencing and just double check you aren't getting anymore of them than the ones you have just mentioned, it's easy sometimes to forget or overlook or put symptoms down to something else.

And your symptoms have developed since opening your latest batch and no sign of them before?

Thanks.

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I think that’s about all as I have mentioned above, but I don’t get floaters like you do, just feel my vision is less clear than it was. I do have some pain in my fingers but I am recovering from a recently broken wrist so that is normal. Plus balance? well my balance has never been perfect and I’m pretty accident prone.

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Thanks very much for letting me know, it seems my symptoms are many times most other peoples, definitely makes me wonder if there is something else going on, confused or what! :-(

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Sorry another thing just occurred to me, a real lack of energy and not wanting to do anything.

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Hi Ellie,

and the lack of energy,drive, motivation has only been there very recently along with everything else? have you noticed any difference since starting the Northstar? i know you have only been on those a few days.

I am also yawning far more than normal!

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Has your sleep pattern altered at all?? i am waking up very early hours and can not get back to sleep however tired.

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I take magnesium capsules a couple of hours before bed so they knock me out, they also calm my twitchy legs down.

Actually I was so knocked out last night I could only manage to watch half of episode 5 of Carnival Row and since the cats had come home early for a change (thank you both xx) it meant I could go to bed sooner than usual. I need to finish watching it today. 😁

For the most part I sleep well, sometimes getting up in the night for loo trip but can easily fall back to sleep again.

Since starting my new pack my eyes seem to be getting back to normal so that’s a good thing. I was worrying about that.

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I have been on Mercury Pharma for the last 3 nights to see if there is any difference but not really apart from my legs seem slightly weaker on the MP than Actavis, however, my eyesight does seem less blurred which possibly means there is a link with the blurred vision then, my other symptoms still the same though :-(

Actually thats something i had also noticed (jeez, the list goes on) far more frequent trips to the loo even though i am drinking no more at all.

Its interesting your vision has improved though as North Star are supposed to be identical to Actavis.

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It might just be down to the weather, I don’t know where you are yourself but we’ve had a hot summer, the last few days have seen Autumn heading our way and it’s cooler thank heavens, and this morning we had some rain.

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Its not the weather for me Ellie, i never get joint issues irrespective of hot, damp or freezing cold climate.

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Hi Ellie,

how are you feeling now you have been on the new pack for a few days more? any of the other symptoms improved?

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Yes thanks, I feel a lot better now.

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so not only your eyes have improved but energy levels back to normal as well, what about your hair fall, has that slowed down? thats very interesting indeed if so because Northstar are supposed to be identical to Actavis, very confusing.

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Northstar is just a brand name on the packaging, the tablets inside are Actavis.

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Hi Bantam,

that's why i am confused as to why Ellie has shown an improvement unless that particular box are not part of the batch that appears to have a change to constituents... It is strange that some people do not seem to have been affected at all by Actavis but others obviously have.

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It is true that my eyes are better again, or so it seems to me. Maybe I had some eye strain, difficult to know but my reading and also my beading glasses are ok again and that’s what I was going by.

I am not yawning early so much and I’m able to stay awake longer again, last night I was up until almost 03:00 waiting for one of my cats to come home. I was tired then but that’s to be expected, but I managed to sit and watch the C4 film until 01:30 I think it finished.

My hair is no different but you can’t expect anything to get better at my age without help. I’m taking vitamins for it but I’m not expecting great things to happen there as my hair started thinning when I came off the pill in 1976.

My energy is being sapped by the worsening pain and stiffness in the wrist I broke, I’m seeing the doctor next week to find out if that’s normal. It stops me wanting to do anything to tell you the truth.

I also need to have another blood test because the doctor had put me down from 100mcg to 75mcg of levo a few months ago. He was concerned I was going hyper because of my very low TSH. I know it looked like that to him but I didn’t want to argue the toss at the time. I thought it was fine but another test will tell me for sure whether I needed a lower dose or not.

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Thanks for taking the time to detail that, i'm pleased your eyes seem better and you appear to be less tired and yawning less as well, that could all be related indeed to the new box of Northstar :-)

Are you taking anything to help with the wrist pain?

What was your TSH reading that your Doctor was concerned about?

Mine has been at various levels between 0.01 and 0.08 for the last 10 years or so and my T4 around 21 but i have felt absolutely fine, my GP has moaned about my TSH a few times and that i should consider reducing but i have disagreed because of how well i have felt prior to onset of my symptoms 10 weeks ago.

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I can’t remember why I had two tests close together, could have been for my cholesterol which was high the first time. Don’t ask about that.

on 5/3/19

TSH = 0.03 mu/L (0.35-4.94)

Free T4 = 18.8 pmol/L (9.0-19.0)

on 26/3/19

TSH same as above

Free T4 = 18.1 pmol/L

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Your TSH readings are similar to mine, What about your T3?

I mentioned in another thread that i don't worry about my blood tests too much at all unless something dramatic has altered, i'm more concerned about how i feel.

It is very interesting though how you seem to have reacted positively to the Northstar which is still Actavis.

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T3 wasn’t tested on those occasions. I know my doctor ordered it because he does what I ask. The lab make the final decision of what to test for apparently.

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It seems ridiculous that Labs make the final decision and not the GP who is face to face and knows our history and any symptoms!

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I suddenly had spasms and pain in my left thigh at the end of March. I was upset as I had been walking well since a hip replacement two years previously. In face I was walking better than I had for many years as I also have bilateral knee replacements. The pain continued when taking pain killers so I saw my physio (private) who was also puzzled and gave me exercises. It didn't improve so she increased the exercises and when that didn't resolve it suggested I asked my GP for a hip xray. This showed nothing wrong as I suspected so I made an appointment with my GP to ask for a referral back to the orthopaedic consultant for further investigation as my physio suggested.

Two weeks ago I started a new pack of Activis and suddenly the pain almost disappeared so this has started me wondering if I also had some of these packs. Checking what I have now there is one batch number mentioned but I haven't started it yet. I don't know what the batch numbers were on previous packs as i haven't recorded them.

I was beginning to put the pain down to muscle damage from statins which I was put on when I was put on blood pressure tablets without being asked how I'd travelled to the surgery. It was a while before I realised that I was cycling to the surgery and then having my blood pressure taken as being raised. I started reading up about testing BP and got my own monitor. My GP now doesn't test my BP and I often take her a sheet of BP results. I rarely cycle to appointments now just in case but earlier this year at an Endo appointment I walked up four flights of stairs to find a nurse who wanted to take my BP and thought I was being awkward when I said I'd just walked up those stairs.

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Hi,

by the number of people who have responded it definitely looks as though there is an issue with the tablets, do you take 100mcg or 50mcg of Actavis, i did an experiment a while ago and it seemed as though the symptoms were slightly less using 3 x 50 as opposed to 1 x 100 and 1 x 50 as my daily dose is 150mcg..

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I take both 100 and 50. 100 every day and 50 four times a week so the daily amount is 128.5mcg daily along with 25mcg liothyonine.

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Hi, thanks for that, have you by any chance noticed any of the other symptoms i have listed just below in response to LMor, sometimes its easy to forget or put down to something else? Thanks.

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I was diagnosed in 2000 but think that I have had thyroid problems for far longer. I started to research things towards the end of 2014 and after initially self medicating Liothyronine I now have it on the NHS. I have insisted on Activis for many years.

I have been lethargic and have a tremor in my right hand but, as this can be traced back to before I was officially diagnosed, I haven't thought of this as a recent symptom though it has become worse since having a general anaesthetic in 2017. The lethargy I put down to trying Propanolol for the tremor as that was all that was offered to reduce the handshake. it didn't make any difference but I felt worse. I am weak on my left side but put that down to having a knee and hip replacement on that side.

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Thanks for sharing that. its now 12.30am and i'm off to bed, i took Mercury pharma last night (sunday) and i have developed further symptoms, i was feeling rough before but i don't think these Mercury Pharma agree with me either, Blimey, i have a real problem here!

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I take 75mcg so I get the 50’s and split them.

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Hi Ellie,

thanks for that :-)

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p.s, do you manage to get an even split when cutting them? the pill cutter i have is useless, its a plastic thing i bought from the chemist but all i seem to get is uneven splits and lots of crushed little bits as well so really difficult to ensure taking the same amount every time.

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I don’t bother with a splitter, I break them easily myself with my thumb nails, they aren’t hard. They don’t split equally but are always in two complete pieces. It makes no difference to my dose I’m sure, because the half plus whole that I take one night balances out with the other half plus whole tablet the next night.

The doctor wanted me to take one 50mcg levo the first night and two on the alternate night.

There is no way I’d remember from one night to another where I was with the dose, hence breaking it in half.

I say night because I take mine after midnight.

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I don't have good finger nails so will have to rely on a cutter unfortunately, yes alot simpler doing it that way for you rather than trying to remember :-)

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So This is how I have been feeling for the last couple of months......every joint hurts, the weakness in my arms and hands is to the point I’ve actually been thinking I’m developing MS. I’m struggling to stand up for the 8hr shifts I do at work and every little thing is a struggle. Headaches constantly (although that’s always been my life with horrific migraines). Brain fog, hair starting to fall. I have even booked an appointment at the gp for next week to ask to have bloods done as I feel so bad. It’s very interesting reading this post and has now made me wonder if this is what could be the cause. I am on 75mcg (50 actavis and 25 Mercury). Now I have two older packets which I always keep in my bag and strangely enough every time we go away for the weekend I feel so much better (take the older pack). I just thought it was because we were away 😬

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Hi there,

have you been on Actavis for a long time with no ill affects until recently?

Do you get any shaking or tremors in your arms or legs?

I dont know what time you take your medication but have you noticed as time progress's after taking a dose that the symptoms lessen/weaken until you take your next dose and then they are back again?

What i am struggling to get my head round is i have been on Actavis 100 and 50 tablets (150mcg a day) for 15 years, no issues, felt really well and then all of a sudden the following symptoms

Muscle twitching all over.

Arm and leg tremors, leg weakness.

Blurred vision with weird floaters.

Breathlessness.

Raised resting heart beat.

Palpitations whilst lying motionless in bed or on the settee.

Balance issues

Dramatic hair loss with thinning eyebrows (but the inner third more than the outer)

Declining energy levels

Mental slow down, memory, mental sharpness.

Dropping off to sleep at 8.30 watching TV and having to splash cold water on face to stay awake, before i was always able to easily stay awake and alert until 11.30-12midnight.

Feet, calves and forearms almost numb but not quite whilst lying on couch or in bed.

joint aches and pains, fingers, toes, lower back, knees.

Have you had any of the above other than what you have mentioned? sometimes its easy to over look or put down to something else.

many thanks.

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I’ve only been diagnosed for just over two years and been on Actavis since then. I take 50 Actavis and 25 Mercury and have always been okish (apart from the usual struggles with Hasimoto and under active thyroid. Yes recently I have been feeling awful and have the unbelievable tiredness, breathlessness/fast heart rate (but I have/had Svt & had an ablation in February) I definitely keep going dizzy, headaches, joint aches, non existent energy levels (really struggling with those). I don’t have numbness but do have tingling and my body feels like my sugars are low so shaky (but inside) Which I’ve not experienced before. I take my levo at night too (around half 11) and yes thinking about it I do feel better later at night.

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Sorry, i replied to myself rather than you, if you look just below, thanks.

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I take mine at 11.30pm and i can guarantee that come 8.30pm my arm and leg tremors and breathlessness completely disappear until i take another dose.

I haven't had any headaches so far, think i've got enough symptoms to be going on with.. how bad is your hair fall? really noticeable or just slightly more than usual, mine is dramatic, so is someone else's who responded on here

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I go through stages. Before diagnosis it was awful. Coming out in hand falls. Then it calmed down and has been good since I’ve been on meds. When I’m under a lot of stress I notice it starts coming out again but often stops after a few weeks. At the moment it’s slightly more and hopefully that won’t increase 😬

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Arrhh, right, i thought you had noticed an increase in fall very recently along with the other symptoms and were thinking it could well be the Actavis.

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I have....it’s slightly more at the moment. It’s one of the many symptoms I’m having right now 😞.

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So all the symptoms you list above have appeared in the last couple of months or only? can you remember that when you finished you last box of Actavis that you felt ok on and then started were the symptoms more or less obvious to you straight away?

Sorry to bombard you with questions, i'm just trying my best to try and identify what is going on here as i seem to have considerably more symptoms than everyone else and i'm trying to work out if its purely the tablets causing some or all my symptoms or something else is going on with me as well.

What i found was i finished a 2 month prescription supply of Actavis and was absolutely fine, then, i opened a new supply and after the first nights dose of 150mcg i noticed the muscle twitching and arm tremors straight away the following day, it was that quick, i went back to the chemist 48 hours later and told them the issue, they exchanged the tablets straight away, got those home, same problem, i exchanged with the chemist 4 times over a period of about 10 or 12 days (chemist could not have been more helpful) same issues with every batch and then the other symptoms have developed over the 10 week period up until now.

Thanks.

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I wonder if it’s worth asking the chemist for a completely different brand and trying that for a month to see how you feel. If you’re ok on them then it would be too much of a coincidence to not be the actavis tablet. Might be worth a try

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I started trying Mercury Pharma last night and will continue for a while to see how i feel but i have noticed a few more aches and my vision is even more blurred after taking them but will carry on.

have you thought about doing that and ditching the Actavis and trying Mercury Pharma 50mcg along with your Mercury Pharma 25mcg?

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I'm not sure if anyone has suggested this already - but it would be worth reporting your experience to the MHRA via the yellow card scheme. The more reports they get, the more likely they are to investigate. yellowcard.mhra.gov.uk/

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Hi,

will they let you know if there have been any other complaints about Actavis or not?

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About 3 years go I made a yellow card report about a common antibiotic that can cause severe life changing side effects for some people - Ciprofloxacin - when I had a reaction to it. They must have had thousands of yellow card reports (don't know what they do in the US but there are plenty of patients there that have been affected). I never heard a thing and it's still widely prescribed. I don't know what the criteria is for investigating and possible withdrawal of any medication that causes severe problems.

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Hi,

i had to take an antibiotic in January this year after the car accident and the airbag burn to my finger which became infected, it was flucloxacillin, AB are never good for the system overall.

I have no idea about the required criteria either. Its staggering isn't it, an antibiotic still in circulation that can cause severe life changing effects for some.

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Actavis has recently been taken over by Accord, is it coincidence that an issue with the tablets has arisen!!

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Hi

Came to the site as have started to get very variable TSH results from Actavis after a number of years’ stability, and wondered whether anything was being reported.

My TSH is varying from too high for being on T4 to too low. There seems to be no reason, is either me, the lab, or the T4 that is varying.

Have noticed what I’d call a muscle shimmer and ache.

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Hi Paul,

which muscles? how long you been experiencing this change? i assume you are on Actavis on its own and no other medication.

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Hi

Calf and though muscles over the last 2 months, same as the volatile TSH results.

Will ask HP for full thyroid test inc FT3 and FT4.

Paul

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Thanks for letting me know.

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Latest batch is TC1510

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Thanks for that.

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i have nothing useful to add here, but I'm intrigued as to how you re all stockpiling. My GP/chemist give me 1 month at a time. Are you all sourcing your own? or is there a trick I'm missing?

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I am prescribed 3 months at a time.

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I'm prescribed 2 months at a time and sometimes i put in for repeat at the end of the 1st month so gradually over time you build a small surplus.

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Me! I’ve always liked activis but the last few months I’ve been exhausted (despite normal blood work). My allergies seem to be a lot worse too?

I throw the boxes when I’m done so not sure which I’ve been taking the last few months but my latest boxes are:

50mcg - TA1825 11/2020

100mcg- TC1499 02/2021

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Hi Sam,

to be honest i'm not really that bothered about my bloods at all unless there is something Absolutely dramatic that has changed, it's all about how i feel as far as i'm concerned, that's where the NHS goes sooo badly wrong, for them its all about the bloods and basically irrelevant how you feel.

I'm really trying to identify distinct similarities with other people, i seem to have significantly more symptoms than anyone else but when you say you have been exhausted can you put that down to definitely the same time as starting a new batch of Actavis? Is that from when you wake until when you go to bed or does it come and go through the day? How about the evening ?? as i mentioned i am really struggling to keep my eyes open past 8.30pm which is ridiculous because up until 10 weeks or so ago i was wide awake until going to bed around 11.30 or 12.

How were your energy levels before the last couple of months?

What allergies has it worsened?

Quite a few people on here seem to have noticed differences but they are not as affected as me but i may have something else going on as well which may have been sparked by the change, god knows.. i know i'm WELL fed up.

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My symptoms are tiring quickly, I have really bad rhinitis now (I actually think I can see a polyp up my nose). My allergies only appeared when I was diagnosed with thyroid so I link it all, the fact I’m suffering now so bad means the medication isn’t right. I’m having headaches, mood swings, cannot stand noise (which isn’t great with 3 kids), feeling dizzy, swollen puffy eyelids and face (that could be the sinus though). I’m going to change my levothyroxine on Monday. I go to Florida in a week, I’m worried sick about how I’m going to be out there.

All this started a few months ago when I got put back on activis (they had been given me teva). Also, when I started activis I went through a really strange spell of having palpitations all day. I was seen under cardiology for it, it was that bad. My heart is healthy and I was discharged but now I’m linking all this up with starting activis. This is why I’ve searched to see if anyone else has been having the same problems as me

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A number of people have mentioned headaches, that''s something that i havent had so far. ive noticed mood swings and being quite emotional one moment and fine the next, it can change in an instant.

I have had palpitations but the strange thing is that i have been getting them whilst im inactive, ie, lying on the settee, lying in bed, its weird, i have also gone through phase of not necessarily palpitations but my resting heart beat has gone up from around 60 per minute to 72 per minute, again whilst inactive.

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I don’t mess around. I need my energy levels half decent. I’m just going to yellow card them so it’s logged incase there’s any future complaints with activis and will have to try mercury. My pharmacist is good to change but I reckon he thinks I’m a psychopath by now. I kicked up a right fuss about teva!

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Good idea to yellow card. I have spoken to senior personnel at Accord who very recently took over Actavis and they assure me there have been no changes to the constituents, but it seems incredibly coincidental that there has been a change in ownership very recently and all of a sudden there appears to be an issue with the tablets.

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p.s, it doesn't matter what your pharmacist thinks, you can change them in a blink. :-)

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My kidney function has gone down to 81% as well, when it’s always been >90. I’m really starting to think that these activis tablets have done me harm.

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Liver function down over what sort of time period is this exactly? as i and most people have only noticed a difference in the last 2 or 3 months, try and relax a little if possible, if your worried take another look at my symptoms :-(

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My kidney was 89%, then I had another blood test and it was 81%... this is like just over 2 months. Got to repeat in November but I bought urine sticks to make sure there’s no protein loss or blood (thankfully not). My GP checks my kidneys constantly and I’ve never had a problem until starting Activis, but he did try me on statins so it could be that. I’ve stopped taking them though as my cholesterol was only 5.5 so I’ve lost 3 stone instead to see if that brings it down. The one positive thing I have noticed though, my hair has gone really thick and grown very fast. My hair dresser commented on it as normally it’s been slow to grow. Shame for all the other negative symptoms

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Well there has been alot of negative press about statins to say the least, not that i'm implying its that. Pleased your hair is growing at least!.

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