Erfa - reformulated ? Or just dodgy batch ? - Thyroid UK

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Erfa - reformulated ? Or just dodgy batch ?

edysia2 profile image
43 Replies

I have received my monthly order of erfa from pharmarama, I have realised that new batch ( 0.5 grain tablets) is almost like a powder. Tablets are much softer, they disintegrate to nothing in a split of a second and I feel nothing after taking them. I had a problem with receiving it, I waited for Pharmarama for 2 weeks, they claimed it was postal problem. Now I have them but tablets are just weird. I am devastated, I feel ill enough , I can't afford getting more ill. I am barely moving.

Anybody expierienced similar problems with Erfa recently.

Thank you for advice . E x

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edysia2
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helvella profile image
helvellaAdministratorThyroid UK

A quick search found this potentially interesting page:

thyroid.about.com/b/2014/01...

Do read the comments right the way down.

Rod

edysia2 profile image
edysia2 in reply to helvella

Thank you Rod. I have seen this post but I can't make nothing out if those comments. They say pills look different? mine seem to look the same but consistency and action is different; there was shortage but now is not ? and they have not been re- formulated ? some claim they were? I have no idea what is going on?

helvella profile image
helvellaAdministratorThyroid UK in reply to edysia2

I was thinking of comments like this:

I received my last batch of ERFA Thyroid about late January and started taking it sometime in February. It didn’t work for me like it did before. My temp dropped to an average of 98.1 and I felt so tired and weak. I heard they changed facilities where it’s processed and that the processing method is different.

And:

To all having problems with 2014 refills of ERFA. I received a prompt and considerate reply from Dr. Knafo this morning. He states that the manufacturing is now done in a new, more modern (but still European) facility. He says that nothing has changed except the machines used for compression. He has sent an email to his colleague at the manufacturing facility. He asks specifically for all having problems to contact him directly. Email for Dr. Knafo henri.knafo@eci2012.net<henri.knafo@eci2012.net>;

edysia2 profile image
edysia2 in reply to helvella

Thank you Rod. It feels to me that this 'nothing has changed ' is not true , I have headache, nausea and God why do they always have to mess with something ?? :( this new facility and new compressing machines ?? Could be the problem.

--------------------------

Somebody said:

March 15, 2014 at 1:50 pm(24) Frustrated says:

I can also verify the ERFA thyroid meds I received in 2014 from canadadrugs are off somehow. I have continuously went downhill since starting them. Not sure what it is, they look the same except for the coating is kind of shinier? But YES something is wrong. I’m seriously debating trying another type of NDT. Hoping someone can find some answers. I have not had any labs since beginning these either. Need to get that done.

-------------------------

I can see now, tablets are more shiny indeed and slightly bigger, but the difference in appearance is so tiny. My headache is unholy and bloating and feeling even more ill than usual :(

I have no idea what to do now.

helvella profile image
helvellaAdministratorThyroid UK in reply to edysia2

If you do nothing else, then absolutely 100% email Dr. Knafo.

edysia2 profile image
edysia2 in reply to helvella

I will do if I survive this. My friend emailed dr Knafo before but he/they always claim that everything is fine and nothing changed. :( it doesn't seem this way. If they keep changing things people will end up sicker and with no options.

susymac profile image
susymac

I got changed to erfa, 6 weeks ago, and completely crashed. contacted the pharmacy at the hospital to get the batch no's incase there was a problem, couldnt actually get hold of the endo and in the end had to order more armour from US and pay extra for airmail. Was totally gutted.

They were 13C28 03/16, and 13C051 03/16

susymac profile image
susymac in reply to susymac

Mine wernt soft though, hard and crunchy, but I felt as if I wasnt taking any meds at all

edysia2 profile image
edysia2 in reply to susymac

Thank you susymac. I don't have batch number this time, I have just checked and as Pharnarama always sends receipt this time they DIDNT just bottle with 84 x 0.5 erfa and ndt leaflet . I don't know what the hell is going on?

This is not the same erfa anymore for sure. I never had any side effects from erfa but now I feel really sick and the headache. I regret but I can't take erfa. I have managed to order nature-throid and WP -thyroid , just small quantities but I don't know if and when they are going to arrive from abroad. I never tried these so I don't know if I will be able to tolerate them at all.

Framboise profile image
Framboise in reply to susymac

Could you tell me please what dose these were. I have an unopened jar of 125mg ERFA Lot number 13C06 expiry 03 2016. I noticed that the label now had a pink colour around the top whereas before it didn't, but assumed they'd be the same as usual. This is really worrying if they've altered production somehow and they're no longer effective.

Well I've just opened the new jar and they look exactly the same but don't have the usual smell.

susymac profile image
susymac in reply to Framboise

0.5 and 1 respectively I thought they smelt and tasted different from what I remembered, but Its a long time since I last took them. Been back on the armour just over a week now and almost back to normal (normal not being the same as most peoples normal).

It would only have taken one of them to be faulty for me to be so ill, but Ive no idea which one or both.

edysia2 profile image
edysia2 in reply to susymac

I have bad reaction to armour when I started the whole medication adventure/ failure last year( feb . 2013 ) After 1/4 grain of armour my face went numb on left side, my limbs went 'weirdly' sort of numb too, I was extremely spaced out and I had terrible stomach pain. I decided quickly that armour is not right for me and I decided to try erfa. I stayed on erfa thyroid for 14 months, never could go higher than 1.5 grain( heart palpitations and brain fog). 1.5 grain didn't cause side effects but same as you I did not regain my 'normal' self , just less suffering self. I have remained house bound, very fatigued, dizzy, achy, prone to infections. I have tried levothyroxine but after one tablet I was becoming suicidal, tried MP, Actavis and Wockhardt with same suicidal feeling just after one tablet ( each time I tried I needed to wait for 20 hours until this unbelievably strong suicidal feeling passed) . I am truly losing my hope that any thyroid medication will suit me. I am terrified for my life. I am taking my supplements and minerals religiously to keep deficiencies under control but that still doesn't help.

Framboise profile image
Framboise in reply to susymac

Thanks for telling me this. I wonder if it's the 0.5 and 1 grains that are different because those are the ones I've read about in Rod's link and on a Facebook thread and they were the ones held up in production. I can't face looking for another form of NDT after Armour and Naturethroid were both reformulated! I emailed Dr Knafo about this last night and he's checking my lot number with the manufacturers to see which country it was made in, but I'm a bit surprised that there isn't much more comment about this anywhere.

edysia2 profile image
edysia2 in reply to Framboise

They did alter production. There is an entry on FB page of stop the thyroid madness. I can't talk . Too ill. Stopped erfa switched to WP thyroid, after two weeks on WP thyroid my temperature is dropping , it used to be 36.1-36.6c now 35.6-36c! Only. Very unwell, worse than on erfa even. I am so angry with Knafo for ' 'changing manufacturing facilities'

Framboise profile image
Framboise in reply to edysia2

edysia have you tried thiroyd or Thyroid-S? A lot of people seem to do well on one or other of those. I don't know what we can do to convince Dr Knafo that something is different, he'll be looking at ingredients rather than some minor change that has really affected us, but I've just seen the latest STTM Facebook entry and perhaps he is at last taking notice. However my jar has the new label in that it has a pink colour around the top, but the old font and lettering and he's saying mine was made in the old factory, which makes no sense!

in reply to Framboise

I have the same lot, 125 mg pills. I have noticed that the pills are harder and crunchier, do have a less intense smell, and are not as effective. I had to go from 6 to 8 grains to get the same results as before.

Framboise profile image
Framboise in reply to

Interesting that you have the same lot Anna, I bought mine in November 2013 so I'm surprised there are any still in circulation. I had an immediate reaction to them, within half an hour I had stomach cramping and became dizzy and had palpitations. I went back to an old batch, tried the 13C06 again and had the same bad reaction. I've found two other people online, in different countries, who had the same reaction to that batch and the pharmacy I bought them from said they had other complaints about them. I've been taking Thyroid-S since last June but will try ERFA again as people seem to be reporting the latest batches expiring in 2017 are ok.

in reply to susymac

Mine are exactly the same, and just as ineffective. Batch 13C06, exp 03/2016, 125 mg pills.

edysia2 profile image
edysia2

I didnt have side effects from hard and crunchy erfa tablets, I think you had old batch. New is soft and shiny

Marilyn1970 profile image
Marilyn1970

I knew it!!! After receiving batch of ERFA (30mg) around Feb 2014. My old symptoms started to linger again. It has been reported in STTM as well. Luckily I still have 60 mg. so I will just cut it into half, urgghh. Been waking up at night with severe palpitations. Planning to order other brand, any suggestions?

Tony63 profile image
Tony63 in reply to Marilyn1970

Hi Marilyn, could I ask if you could please put up a link to the STTM article? I have been searching but I can't find it.

Thank you

Tony

Framboise profile image
Framboise in reply to Tony63

I think this is the link facebook.com/StoptheThyroid... date March 21st. I have just emailed Dr Knafo again as he told me there was no difference in formula but something is different.

Tony63 profile image
Tony63 in reply to Framboise

Thank you Framboise we're having no luck, I spoke to the pharmacy today and they've heard back from Henri Knafo and he maintains that there is nothing wrong and that he has heard nothing about this problem, so as a result the pharmacy won't offer a refund on the faulty tablets or swap them for something else. Dr Knafo emailed us the other day to say that he is going to call us to talk about our concerns but he hasn't called yet. We believe that tablets are different now as Edysia has never reacted to ERFA so badly before. There are other people who became unwell too.

Tony

Framboise profile image
Framboise in reply to Tony63

I have had a horrible day today too after taking 1.5 grains new and 1 grain old ERFA, stomach problems within half an hour, then faintness, lightheadedness, nauseous, there must be a difference whatever they say. However mine aren't shiny as edysia described and they're also hard, not crumbly, but don't have the strong smell the others had. Dr Knafo replied to my first email last week but hasn't replied to my two emails since then, but he must know that some people are having problems because he asked one person to tell people to email him. I've now found three other places where a few people are mentioning this. I had problems when Armour reformulated and hate the thought of trying out the other types of NDT again, not to mention having a jar of 490+ new ERFA! I don't know what we can do about this, it would help to know what the difference is.

Framboise profile image
Framboise in reply to Marilyn1970

Marilyn please could you tell me the lot number and expiry date of the ones you got in Feb and where they on prescription or privately ordered? Also have you reported this to Dr Henri Knafo at the ERFA company in Canada, he's asked to be told of anyone having problems since the manufacturing changed from Belgium to Spain : henri.knafo@eci2012.net if not please do so because it gives weight to those of us who've also reported a difference and might make them take notice. Did your new tablets look different at all from previous ones? Please can you give the link for where it's been mentioned on STTM because I've been looking and haven't found anyone else reporting this apart from Mary Shomon's page which Rod linked to above. I'm also wondering what to order next :(

AlexL profile image
AlexL in reply to Framboise

I wanted to weigh in, as I too, am feeling progressively worse after taking my new batch of ERFA. I used to order my medication (60 mg) directly from ERFA's website, but I was advised in January that they would no longer fill prescriptions. My most recent batch came from The Canadian Pharmacy. I still had about a month's worth of pills from my old batch, so I didn't start taking the new pills until the beginning of April. I first started noticing extreme constipation, then interrupted sleep, stomach pains, and feeling jittery. I have been on ERFA Thyroid since 2010 (after no longer being able to tolerate the change made to Armour's reformulation) and have NEVER had an issue before now. Since I am feeling EXACTLY the way I felt when Armour made their change, I am not buying that the formula for ERFA hasn't been modified. Perhaps they changed the fillers? Armour replaced the dextrose with cellulose, which clearly is not absorbed at the same rate. I emailed Henri Knafo last week and again yesterday but I have not received a response. I'm not sure if I should re-order from a different pharmacy or ask my doctor to write me a script for a different NDT. I am so frustrated because I felt amazing for the past couple of years and now I have to go through this again. BTW - my new pills were also slightly different - shinier and slightly bigger.

Framboise profile image
Framboise in reply to AlexL

Hi Alex, this very odd, because my tablets look the same as the previous ones, but don't have so much smell, but that could be because the old ones are now a year old and the jar has been opened every day. Dr Knafo was on holiday last week but even so did email me the previous week and again last Thursday saying mine were made at the factory in Belgium, not the new factory and are the same as before. I've tried to think if anything else could have caused my symptoms last week and perhaps the faintness could have been, but not the stomach upset. I am really surprised that there aren't more comments about this but those that I have found give different lot numbers but the same expiry date - 03 2016. Can you find out the lot number and expiry date from the pharmacy you got yours from? I'm assuming that the formula is mixed and then divided into doses and different sized tablets.

AlexL profile image
AlexL in reply to Framboise

I am actually scheduled to talk to Dr. Knafo today. I sent him all the information that was on my bottle, but there was no lot number. Just a bin number. I will tell you that I am feeling a bit better. I started taking my morning pill sublingually and then my evening pill orally with water. I must be absorbing more of the meds via the sublingual method. Have you had your ferritin level checked to make sure you aren't low on iron stores? Also get your vitamin D level checked. Both have caused me issues with my thyroid balance in the past.

edysia2 profile image
edysia2 in reply to AlexL

Hi Alex. Do you mean you started to feel better just by taking them sublingually ? Or did You get another batch of Erfa? I am wondering what Knafo will say? He supposed to phone me too but he didnt so far. My iron, b12, d , folate all in check and optimal so that's not the problem. I had alergic -like reaction-stomach issues and headache.

AlexL profile image
AlexL in reply to edysia2

I have not received another batch. I just started taking sublingually, which seemed to improve the absorption rate. I, too, was having stomach issues, but those also seemed to subside. I am eating more frequently, as I seem to feel better with food in my stomach.

edysia2 profile image
edysia2 in reply to AlexL

I am scared to take them again, unless I will have no other choice. I am worried that it will keep harming my stomach, I suffer from food allergies, and I wonder if one of the fillers is not allergenic. Hard to tell for sure.

AlexL profile image
AlexL in reply to edysia2

Have you ever had stomach issues before with the ERFA or was this new? When I spoke to Dr. Knafo today, he assured me that the only thing that is different between the old tablets and the new ones is the plant in which it is being manufactured. He said that the pills are definitely harder, due to the compression machine that is pressing the stamp onto the pill. But other than that, there has been no change in the formulation, or even the vendors who provide the ingredients. However, if you have food allergies, it's possible that even if you have been on the ERFA awhile, you may have just recently developed the allergy. I have been told that for those who have a lot of allergies, the best NDT is WP-Thyroid, which only has 4 ingredients. It's made in the US (that's where I live), but you could probably order it.

edysia2 profile image
edysia2 in reply to AlexL

No never had stomach problems with Erfa prior to this. I switched to WP thyroid 2 weeks ago but it doesn't have the same 't3 kick' as Erfa.

Yes that what H Knafo said via email that only facility changed but it must be something else, they wouldn't admit anyway, it's against their business.

edysia2 profile image
edysia2 in reply to edysia2

The only thing

That is different with my erfa is that they are soft and falling apart easily not hard and crunchy. Could be pharmarama ? Dodgy batch? They maintain it was fresh but it was the only bottle that I received from them that DIDNT have receipt and batch number, so I don't know what to think.

AlexL profile image
AlexL in reply to edysia2

In the 4 years I have been on ERFA (old and new), the tablets have never been soft or falling apart. It really sounds to me like you got a "bad" or old batch. I would reorder, maybe even from a different pharmacy? I hear good things about Canada Drugs at 1-800-226-3784 - canadadrugs.com. I ordered my last batch from The Canadian Pharmacy, but I'd be reluctant to tell you to order from them since I have been having issues since getting my first batch from them.

edysia2 profile image
edysia2 in reply to AlexL

Thank you for letting me know. I don't have prescription at this moment ( do i need it for canadadrugs.com?) but I will try in the future. Do they ship to Uk?

edysia2 profile image
edysia2 in reply to edysia2

I just checked canadadrugs.com and strangely it says : 'Armour thyroid marketed as Erfa thyroid in Canada'?? I have no idea what is it then Armour or erfa?

helvella profile image
helvellaAdministratorThyroid UK in reply to edysia2

This is a bit like using the word "hoover" for any vacuum cleaner, made by any company.

Everyone searches for "Armour" - almost no-one searches for "desiccated thyroid". :-)

What you have found is a site that is saying "We have desiccated thyroid made by Erfa but we know you will search for 'Armour' so we'll make sure we say that as well".

Rod

edysia2 profile image
edysia2 in reply to helvella

Thank you Rod:) that's what I thought but it's strange to do it this way. However I came across doctors who call every brand of ndt Armour. They don't get it, they don't understand if you say ndt or natural dessicated thyroid but they understand 'Armour'

helvella profile image
helvellaAdministratorThyroid UK in reply to edysia2

I don't know where or when the term "natural desiccated thyroid" came into being. In the UK we had Thyroid BP. The general term "desiccated thyroid" seems perfectly adequate. So I am not sure why an average doctor would come across the phrase "natural desiccated thyroid" - and am not surprised so many do not recognise it.

You also get a very similar thing happening with T3 - almost always you see the name "Cytomel" even when the company is quite clear that it is not the Pfizer/King product they are selling. And with "Synthroid" (maybe even to a lesser extent, "Eltroxin").

Rod

Framboise profile image
Framboise in reply to AlexL

Dr Knafo told me that my tablets were made at the original plant in Belgium, the label is the same print and same font as the old one but with new pink colour added, the labels on those from the new plant have a different print and font. However someone else on the STTM Facebook page has posted with the same lot number and expiry date as mine saying she's reacted to them and to another lot number and expiry later in 2016. Something has definitely happened to the manufacture sometime towards the end of last year because I bought mine in November 2013. I don't know how we can persuade them to investigate this, I'm happy to send them my tablets to analyse - or perhaps that what we need to do, get the new ones and old ones analysed, but that shouldn't be up to us!

waveylines profile image
waveylines

Hi Everyone,

Am flaggin this older post back up as I am having great trouble with Erfa tablets -has rendered me unable towork after sucessfully using them for several years. I fee like I am not on treatment -all my hypothyroid symptoms have returned with a vengence.

Maybe I am slower on the hoove to pick up that there is problem -having blamed feeling ill on everything else -then I suddenly realsied that this kicked of last January when people were reporting problems on Mary Shomans site -now I find stopthethroidmadness, TPA & I understand sites on facebook (am not a member) are full of people complaining about feeling poorly on Erfa Thyroid.

Have been emailing Dr Knafo and he is fully aware of my difficulties, batches and expiry dates but on12th June 2014 he posted the following on stopthethyroidmadness:-

Quote:

"Dear All,

I wanted to thank all of you for your response and wanted to update you on the results we got from the retesting done by an independent lab. All the side effects reported were sent to Health Canada and all the retesting were done by a reputable independent lab.

We got about 70 patients reporting to us and there was 55 lack of efficacy reports. Half of the time we had the lot number and we could do an analysis of which lot were involved. There was NO relations between the batches involved and the side effects reported as many batches (50%) were trace back to our older production. Regardless, we decided to retest the batches that were involved (both from the older factory and new one) and sent everything to an independent lab.

There was no difference in concentration from one batch to the other. We did not change our formulation, suppliers nor our manufacturing technique.

We have over 10,000 patients in Canada only and reports from Canadian patients were much less in numbers. We cannot explain why many of you are experiencing those symptoms however I think the right approach is to take every single case separately and understand if there is no other variables involved. The number of reports are however consistent with the increase of sale (we sold 3 times more Thyroid in the past year).

The test results are available in our office for anyone that wants to consult them.

I hope this update clarify a bit more the situation and action we put in place. Please feel free to contact me anytime.

Regards,

Dr H. Knafo

Medical Director ERFA Canada 2012 inc."

stopthethyroidmadness.com/2...

patpj profile image
patpj

Yes. I just took my first dose this morning and noticed exactly the same thing. What is going on? has the formula changed?

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