Thyroid UK

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Avoid Generic mixed dose drugs!

5 months ago•29 Replies

Heads up to those on the 25mcg taken in conjunction with other thryoid for top up doses. The UK they are mixing them so no 2 are composite the same. Differences are between 15, 10% which don't sound a lot but can mess you up big time!! Be sure to get a 'named brand' if your switching doses daily I do a 100 one day and 75 the next to even keel me. I just got back from living hell here and the pharmacist in our village surgery clued me to the cause the 25mcg can be a mixed batch from different suppliers this means you might get a either or a different generic and generic are not a BRAND to start with so your really dicing in this...So my normal is Activis I had a dreadful reaction to TEVA 2 yrs back and I thought I was breaking in two mentally...the answer is Mercury and Activis don't mix 'for everyone' I was in that bracket. After the worst spell ever shaking /anxiety, I talked to the pharmacy at Boots and he explained because we are not one size fits all that a brand and only a pure brand will ensure the composition is exact same every time!, Nobody tells you this either and I have yet to see it on the sites. These drugs not only mess the system if they are wrong but the mindset too so be very aware of this in UK . I had a friend in USA that went through the exact same and she urged me to get a brand (so I have) finally... The difference is mind blowing!! Mercury do one Eltroxin. Its like being re born I am seeing a Endo and intend to discuss this then. This should not be happening further it could be a reason enough why folks are looking to T3 for transfer? I am no expert on this so its just a thought on T3 trouble. What is needed is brand drugs as the composite needs to be exact every time if your running a 25mcg into the mix, this is well worth the trouble I went through to inform others here!! .... I suspect the reason is 'COST' pure and simple.

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Music1

in reply to helvella

5 months ago

I didn't know that at the time. When I tried to complain and ask for the same brand rather than (off cuts) they got quite angry and simply said it was Levo and the ingredients were exactly the same and the brand didn't matter. I should have got a second opinion as this continued for nearly a year until I told the GP I would collect my own prescription and take it to a different chemist (not realizing I could do this). I never got any PIL leaflets at all just the generic sticker telling me how much to take daily with my name etc. I wouldn't go back to that chemist, but it was close to the GP and they said it was normal to send my prescription straight to them so it would be ready for pickup. Thanks for letting me know about the PIL. I think this was the first time I was taking prescription meds so I didn't know. Thank you

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Music1

in reply to helvella

5 months ago

No not at all. I felt quite ignorant as I just asked the GP what they normally did - sending it to closest chemists for pickup etc. I feel quite stupid now, after someone else told me I could take it wherever I wanted etc. When my mum passed away I took a small bag of unused meds to a chemists to 'dispose of them appropriately'. Everytime I got my prescription in a random white box all mixed up I got quite angry and felt like I was being passed the equivalent back. I appreciate you letting me know, only wish I'd done something about it earlier but I thought they must be correct regarding branding and ingredients etc. I felt bad for even asking or questioning them. Anyhow, lesson learned. I appreciate you writing this for others to see - so they don't get 'fobbed off' as well. Many thanks.

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helvellaAdministrator

in reply to MaisieGray

5 months ago

I very much agree that we shouldn't think a problem into existence.

My attitude, when I was first prescribed levothyroxine, was that I wouldn't take any notice of the make. And I didn't - switching freely between Mercury Pharma, Wockhardt, Actavis and Teva.

Then I was hit by the 2013 Teva issue where the tablets were not delivering the claimed dose. As soon as that broke, I switched off Teva (before they had been withdrawn). And felt somewhat better. (What I think significant is that the tablets had the right amount of levothyroxine - they just failed to deliver it.)

Afterwards, likely influenced by my experience, I was more observant. Yes, manufacturer did make a difference. I tried several non-UK makes - L-Thyroxin Henning, Aliud, Uni-Pharma. All were fine. But just Activis seemed to underdose me. And just Mercury Pharma seemed to overdose me.

Settled on 100 Actavis and 12 Uni-Pharma very happily for quite a long time. Tried to change to Teva 12.5 and disliked. More recently I increased to 125 but did not like making up with 25 Wockhardt. And 25 Mercury Pharma just isn't quite right either.

flo1

5 months ago

With respect Maisie Gray they are not tested at the same level as Brand its documented if you do research on Dr Google. I did my research as I have a genetic disease which lead to Hashi problems five years after I was diagnosed with end stage Lung Disease...also important to note that generics can differ in value in composite between 10 to 15% which does not sound a lot but in (some) would push you over the original planned dosing (as in my case!) The reason for TEVA withdrawal is my stomach could not handle whatever binding is put in there, and that changes to brand and generic as we can all only get one BRAND in UK which is pathetic in itself as the US has quite a few to hit and play with to get what suits a persons individual based chemistry it is all for now I have to go on. TEVA is the cheapest, believe you me I know all about 'cost cutting' on the infamous NHS which is basically a bloody lost cause these days...I have been denied the only dedicated treatment for my condition for a decade, this same treatment for a bit more in depth knowledge is available in most European Countries and even Poland!! a Eastern block Country ...It beggars belief here and what they are up to and getting away with. Most Docs are aware these are Hormone drugs (getting back to levo) and that generics are a bad idea ..regarding the T3 I have no idea on this but after 3 yrs of persistant requests to be referred to a endo I finally have a apt (although the date) is not yet arrived and will aim to find out more on this and hopefully arm myself with valuable info for future ref. I am wiped to hell and back with fighting for rights to care and treatments in a Country deemed the 5th richest in the World whilst we are all being denied rights to half decent and efficent health care here...My straw broke on finding this out it was the very last piss take aimed at patients who they are unable to support, treat or care for as we are finding out to costs great ones ..like peoples lives. If they cannot fix it scrap it and start again but clearly something needs to be done the last 5 yrs have seen a envious instituion in the toilet and I suspect this is down to numbers as we are and have to be the most densely populted Western Country per Capita on planet earth...so its broke but it has to come up with better care, treatments, and fixes and that is levelled at the not to NICE people that are costing and cost planning without thought for effective drugs and target treatments this Country is screaming out for...I could of landed up very ill going through this and I do appreciate that every persons bio chemistry differs but they have3 to be mindful of this ! Very mindful.

MaisieGray

in reply to flo1

5 months ago

The drug tariff price ie the price at which pharmacists are reimbursed or remunerated irrespective of what they may have paid wholesale for the drug (Part VIIIA Cat M) for 25 mcg Levo tablets is the same for Teva as it is for all the other 25 mcg tablets, listed in the online BNF. So there is no saving to the NHS if the pharmacy dispenses this, that or the other Levo product against a prescription for (generic) Levo. If, as seems to be currently the case, wholesalers are negotiating preferential prices with Teva that they can then pass on to retailer pharmacies, it is the pharmacy that benefits, not the NHS. Conversely, if the price to the pharmacists for Levo, increases above the Tariff price, the pharmacists have to carry the loss, which of course is commercially disadvantageous to them. So in terms of drug tariff priced drugs and pharmacists purchasing choices, you can't levy criticism at the door of the NHS.

I'm not sure others would necessarily agree that the UK is ranked 5th in the world's richest countries, and there is of course, different ways of defining wealth. A 2018 projection by the IMF for 2019, for instance, ranked the UK 7th in GDP terms, whilst it didn't even make it into the top 25 countries using Gross Domestic Product at Purchasing Power Parity per capita .....

In terms of the two articles you linked to, below, there are several statements within them that I could take issue with, but won't do so here. However, the Chicago article states "Currently, a generic drug must work at least 80% as well, or 125% better, than its brand-name counterpart. This means if you think of the brand-name drug as 100% (Lexapro is 100% Lexapro, n’est-ce pas?) then a generic can be as low as 80% of the brand-name drug or as supercharged as 125% of the original". Compare that with the other article which states "Manufacturers of any preparation of levothyroxine must ensure that their drug is within 5 percent of its stated potency, which must be between 95 percent and 105 percent, per the FDA." The two do not correlate. However, I wrote in my first post that whether generic or otherwise, all drugs are subject to rigorous quality control and specified parameters, which you have disagreed with. But if you refer to the FDA's own website, it states "FDA limits how much variability is acceptable. For example, in a very large research study comparing generics with brand-name medicines, it was found that there were very small differences (approximately 3.5%) in absorption into the body between generic and the brand-name medicines. Some generics were absorbed slightly more, some slightly less. This amount of difference is expected and acceptable, whether for one batch of brand-name medicine tested against another batch of the same brand, or for a generic tested against a brand-name medicine. As a rule, the difference for the generic-to-brand comparison was about the same as the brand-to-brand comparison". And it clearly states that for a generic drug, it requires that "It is manufactured under the same strict standards as the brand-name medicine. It meets the same batch requirements for identity, strength, purity, and quality. The manufacturer is capable of making the medicine correctly and consistently." Hence my writing what I did. I'm not disagreeing that patient A might feel better than patient B on one drug over another, not least because of any variances in excipients; simply making the point that not everyone will have the same need for consistency & etc, or the same experiences.

flo1

in reply to MaisieGray

5 months ago

There is no information to access regarding statement so please add a link. What my search has found is the variables in 10 to 15% ranges with different product that in UK case is mostly generic. The medics oppose them data is there Google due to this fact alone. In the mainstay we all variable chemically so trial and error is acceptable no size will ever fit all. However, with the potency of hormone drugs I would guess that even 1 % can make marked differences to us if we sensitive. Clearly I come into that category. Proven by what I just experienced and hopefully now what I am coming out of. If you read the posts clearly , I have outlined that consistency is vital! So generic or brand there has to be composite consistency! This does not exist if your on a generic with no equal to the other meds in my case Activis. As they do not make a 25mcg tab therefore I was issued a medical bottle no PIL again something i until this post knew nothing on/ about and labelled levo ..dose. No name so this was then queried at my village pharmacy ..their exact reply was .'we cannot guarantee same batch on 25mcg so it could be any one of generics of brand at 25mcg.'.with that taken into account your now mixing per cent! Binders and god knows what else? Boots pharmacist outlined to me bad idea the dose be that generic or brand has to be consistent in composite to avoid 'reaction' ...I have learned a hard way here. If your outling to me cost cuts do not exist on our NHS I can outline 100's of examples to you. I have dealt with them 12 yes with a fatal genetic condition here that nobody is prepared to fund! The system is broken it has been for decades we are all feeling its effects not just mysel most have horror stories..all have countless stories to relate. I am guessing your main issue is thyroid? I only wished mine was. I am not being petty here I have seen and felt the ongoing lack of care /treatments afforded to most Western Countries...and we are becoming a standing joke! This system was set up to cope with what was in place it's not moved or progressed due to many issues the UK faces population growth..in that alone is millions of old folk without social care and using Hospitals as stand by. I refuse to do A &E due to unacceptable level of waiting times my last stint was 10 hours! I lost my beloved Mum to no beds in Manchester and no surgeon ! 8 hours left to die in 2014 and she at 79 do you find this acceptable? I run support grps for my condition daily hourly reports come in on basic level of negligence and frustrations that are being taced here in a system drowned. I am denied a target treatment for a condition I was born with my fault? Your deluded if your thinking we are up there with the best ..far from it. I have now after waiting 12 yrs and fighting for my own life been informed that a village surgery is only able to guarantee a named doc appt a month in advance ..we live in a Village! My Consultants I have 3 are based in London with a exception of 1 so as as a end stage lung disease patient I am forced to travel 600 miles round trip to access people set up and dedicated to my condition10 yes 9ngoing on that crap to get nothing more than a test because the drug needed is too expensive ..so u can see my break point on a cheap thyroid drug or I sincerely hope so ..is this right..fair? Also I pay travel overnight costs as they don't reimburse me ..is this right? Please don't insult me here I am in the absolute thick of a system failing those in it and have been over a decade! Incidentally pre this when I had a normal life and minor complaints through good health I found the system to work...all be it at slow pace but work! So until your in the thick of the great NhS your not in positions to judge it..which is what its backing itself on and has done decades..The last 5 yrs its slide into the abyss totally not just rare disease patients are facing this millions are !. TALK to the chronic diseased here see what the got to say or the millions awaiting a correct and proper diagnoses., those awaiting operations and those battling the system for better drugs and fund raising to the US talk to the world of the sick the dying and those in dire need of a standard of healthcare also talk to the staff of the great once great British institution get their take . Check out the corridors of overcrowded A & E departments every blasted Winter shoved on trolleys and by passed on decent practise of health care being left to die as in the case if my beloved Mum ...A & E departments on News most Winters people shoved into corridors . I have Consultants moan to me and point out annually the fundamentals of no funds ! That is COST CUTTING!!! we have the money to fund it's not being given -! s. The one example of decent care in uk is Cancer and I further know of that after losing my brother this past Xmas to it his care plan/treatments were exemplary! Why? Its funded by Charity money. We have some of the greatest surgeons in the world nurses and even Docs but without a fund pot and a population explosion due to mass migration/ longevity at all time high we are collapsing hourly...its a miracle it's still around!!! Theres your clue because its carrying a huge cart but its managed this far so they give what's deemed as 'Basic care ' and basic drugs because the better and drug market is expensive...but effective ! I know I fought ceaselessly the Cochrane review board to get a drug passed here in order to save young people from dying ...and basic drugs because cost is the issue and if your not willing to except thus as a resident..leave !..but all our drugs are sourced and given due to cost effectiveness here make absolutely no error on this one ..on a final note check out Cochrane review body that is commissioned by and sourced for a objectionable ruling by NICE who make all the final scope for recommendations for UK Drugs mostly used to look to cost and cost effectiveness very little attention paid to patients enhancements of care treatments which is why NICE has been subjected to critical criticism over decades here . Now in disarray due to focused corruption within the institute itself so much for our regulators Hey? wish u a good day

flo1

in reply to flo1

5 months ago

Q: Are there other instances when you should opt for a brand name?

A: “NTI (narrow therapeutic index) drugs can be tricky because the blood concentrations you need to achieve a therapeutic dose and the concentrations that will cause harm are very close together. Small changes in concentrations can lead to ineffective or toxic responses. Medications for seizures, heart arrhythmias, thyroid hormone, warfarin (blood thinner), and lithium are all NTIs. With these, you need to talk to your physician about switching to generic, make sure you understand the risks and rewards, and that you are more closely monitored for the first couple of weeks afterwards.

“Of these NTI drugs, patients with anti-epilepsy drugs are a unique group that do equally well when started on brand or generic drugs but during the couple of weeks after switching from brand to generic or generic to brand, they are more likely to go to the emergency department or their doctor’s office. Epileptic patients should not be routinely changing between forms of the drug for this reason.

“Some patients will tolerate a brand name medication but when they switch medications, they simply do not do as well. The reason may be that that while the blood concentrations of the brand name medication are very similar, what the tablets are made out of can vary. So while the average patient does as well, not everyone will. If you are that outlier, you are better off on the branded medication or another generic. I usually recommend trying two generic versions before giving up and moving back to a brand name drug because again, the costs are much cheaper.

“There’s been a lot of consolidation in the generic manufacturing industry (companies merging with other companies, leaving less competition in the field). In very rare cases, we are left with only one generic manufacturer, so the generic is more expensive than the brand name. Supply and demand also happens in generic drugs and it’s all what the market will bear. Insurance companies may stipulate that you get a lower co-pay with generic than with a brand name even if brand name is less expensive. Patients with very expensive generics should ask their pharmacists if brand name medications are actually cheaper and if they are, switch back to the brand.”

flo1

in reply to flo1

5 months ago

You basically can see here above why the questions need addressing NTI narrow theraputic windows are what Thryoid drugs are manufactured and indicated under...'toxic exposure' by mixing product on a 25mcg as the same drug (generic) Activis does not do them...so the mix was in place with no label and worse still no indicator or guarantee that the product matched this is diabolical by any standard..as is clearly outlined above on one of the posts links generics are getting more costly in US because the market is driving it that way but the drugs are not and never will be anywhere as effective or good for a person as brand, again clearly outlined. We are all mercy to this and I have learned a big lesson in this which is very difficult challenging in my usual state of health to add on top of this a mixed dose with no indication of what that product is and whether it was non consistant I have no way of knowing other than what was stated I am now on a Brand again this is going to take clear time to settle but a oxygen patient at best should not be at any cost put through it, and it should have been explained pre the adjustments so I could of made an informed decision on that 25mcg and given my own risk ratio ..so again check!!!! If your on a adjusted dose of generic and you need a 25mcg try and find the match...stick to the same name....or switch to a brand...ours is Mercury Elexcetron in UK its the only one we have or ask that you get the dose adjusted to the generic which the chemistry is used to ...I am beyond words and beyond bloody hope with the incompectence I am facing here. ...because clearly this should of been spelled out! So a big fat warning in place will I hope help others

flo1

5 months ago

Hellava my batch in the 25mcg's was not mixed it was a no guarantee that I got a dedicated 25mcg so ie I was issued either Mercury mixed with Activis or Teva (which I am unable to take!) ACTIVIS does not do a 25mcg tab!!! So my original script of Activis which I am fine on of 100 or 50 is stable the UK cannot guarantee a 25mcg tab in batch , so your going to get mixed dosing (which is what happend) my body reacted very severely!!! If you read the literature it can cause phycosis! These are highly potent drugs! We are not dealing with a asprin when we are trying to sort out the body's hormones. So essential a mix is dangerous. I was speeding literally and unable to concentrate or focus horrific experience . I spoke with a Spanish Pharmacist at Boots because I was at my wits end, I live in a Village in Devon and the dispersery informed me that the 25mcg is not one Activs does so they can only get what they get and there is the 'mix' so your getting a full dose of 25mcg from other generics ..and no guarantee what they could be...but not Activis. Check out the 25mcg ranges here in Devon its not available. I was on 100 mcg and fine but my problem ongoing is going from HYPO to HYPER so they always drop the dose to alternative days on 75 and 100 , I have tried 3 times a week on one and 4 times on another to finely tune matters and its been ongoing for years! So I insisted on referral ..finally I go , in the past I used Mecury and so adjustment was no problem but the Activis move when Mercury stopped at my surgery caused the problem with 25mcg as they don't do it ...so I was given a brown bottle with 25mcg on it no name ..I queried this immediatley after I pieced matters together myself and asked what they were ...there reply was we cannot ever be sure its what is delivered to us so god only knows what generic but it was not Activis as this cannot be sourced in 25mcg and there is where the problem lay! I did the work and dug the information and Boots informed me to stick to brand all same dosing when flucutation between dose is needed which is what got me a brand name Elexotron (above) ..its been a horrfic experience and this is why I thought to WARN people....dangerous as I have no lung capacity and to swing from one side of this crap to the other and try and breathe through oxygen is a little too much to ask any one to do..If anyone knows that Activis does 25mcg please inform me and I can take this up with surgery in the Village but its been a total learning curb, and then reading the literature above opened the pandora box on what we are essentially being fobbed off with here! disgraceful!!!!!!

flo1

5 months ago

I do understand, so I intend to go up there with this page printed tomorrow. They never issued a PIL and the bottle was small brown with 25mcg on it with no name I will see if I can up load a pic as thankfully still have the bottles! So in essence no idea what generic they were? Like I said after I pieced this together 'myself' I realised this was the problem! I have a good friend in USA with same genetic condition who also took generics and was all over the place until they put her on Synthyroid her balance , function came to normal that same lady just had a double lung transplant...She kept insisting I get a brand because it worked for her and after years of swinging from hypo to hyper it seemed to make absolute sense to me. Hashi's is on our spectrum so maybe we are in baseline more sensitive to the chemical mix? No idea and honestly tired of trying to figure my own health care stuff out here. Worn out with it all...utterly. I thank you for the information and will update after I ask their view on this mishap, because clearly that is what its been, a very costly one to me . I am furious. Will update.

flo1

5 months ago

Music1 thanks for the response from you on here its really good to know someone else has been subject to this crappy service and a very dangerous one! Please everyone on 25mcg generics insist they show you the whats in these thrown together packs and or bottles inmy case a brown bottle will post tomorrow and again nothing on the bottle just levo and mcg amount...I have been to hell and back on this and I am not yet out the woods as once your unbalanced its a long road to balance again...just hope my shaking stops its driving me insane. I will put this too them and see how they respond a strong complaint to the office and see where it goes from there I honestly felt like approaching the press on this as they should not be able to get away with this sort of practise especially a person with stage 4 lung disease awaiting assessment for a TX...if I get refused as a direct cause of thryoid I will law suit them and further make it public via the press in England! It needs showing to a lot of people suffering out there who are desprete for a fix , having had lung disease over 12 yrs and thyroid I can assure everyone here that coping with lungs is easy to thryoid...that tells you all a great deal on this stuff..and thats coming off someone who is looking to be transplanted.Unbelievable.