need advice on NDT: I was diagnosed with... - Thyroid UK

Thyroid UK

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need advice on NDT

christine502 profile image
33 Replies

I was diagnosed with Hashimoto's thyroiditis ten years ago. I was on thyroxine (up to 200 mcg daily) for the first eight years. Two years ago, I was put on Armour Thyroid. I did just fine on it for the first six months, and then started going downhill. Looking back, I realise that I did just fine on the smaller pills (15, 30, 60, 90 and 120 mg), and went downhill when I started taking 180 and 240 mg pills. I have no idea why, but I cannot deny the difference in how I felt when I started taking the 180 and 240 mg pills compared to the smaller ones. Someone suggested that maybe I got the old formula the first time around, but I got those pills in late 2011, which means that they would have had to been manufactured in late 2009, right...so after the reformulation?!

I had read a lot of great reviews on Thai thyroid products, so I ordered Thiroyd a year ago from an online pharmacy using drop shipping within the EU. That pharmacy (Edrugnet) has since shut down, or at least disappeared, and I have no idea what happened to it. It no longer seems possible to order Thiroyd with drop shipping, and I don't know about getting it directly from Thailand?

Anyway, because I had such a negative experience with some of the Armour batches, I asked to be switched to Erfa four months ago. I cannot complain, I have been doing just fine since but, although I have been feeling more and more hyperthyroid, I keep putting on weight (which suggests to me that I'm still hypo?)

Does anyone know if the cellulose in Armour is really a problem? The US site Stop the thyroid madness seems to think so, but I'd like to hear from others? Some say that if you chew the pills up, it's OK. Others claim that only the higher strengths were reformulated, not the lower ones (which seems to coincide with what I experienced; when I went from 120 to 180 and 240 mg pills I felt worse?). Then there are some who say they'd never touch the stuff again, but I have also found a few posts saying that they do even better on the reformulated than on the original Armour...but an overwhelming majority say that they felt best on old Armour, and that they feel better on Erfa or another NDT drug rather than on reformulated Armour.

I'd appreciate any advice. How many here take the reformulated Armour and feel fine? If so, do you chew the pills up? How many are happy with Erfa? Anyone on another brand?

Thanks.

Christine

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christine502
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33 Replies

I've been on armour for 15 years. When it was reformulated in 2009 i went really downhill and put it down to having had an op. When i found this site, i realised the armour had been reformulated. I think it was changed again, as it is softer again and like old armour and it's absolutely fine.I still chew it when i take it.Personally i didn't get on with Erfa at all.

christine502 profile image
christine502 in reply to

There have been other reports as well about a possible second reformulation; the problem is that Forest isn't communicating with its customers. But many seem to think that the pills are softer and don't taste as nasty anymore...

One possible problem with Erfa is that I seem to be allergic to it...! I don't know if it's Erfa, but I have no other known allergies and, since starting Erfa, I have been itching all over. The only thing that helps is hydrocortisone cream, but I prefer not to use that regularly. Since there are very few ingredients in Erfa, I don't know what I could be reacting to; the talc? Or possibly the sugar? The Erfa pills are very sweet, it's like eating candy...at first I thought that if I was reacting to one of the ingredients, that would go away once I got used to it, but that has not been the case.

in reply to christine502

Yes, it is the second reformulation that has been the big improvement, making armour now like it used to be.

If you are itchy-could it be also due to the hot weather? x

christine502 profile image
christine502 in reply to

Janjan,

Do you chew, swallow or sublingual your pills?

in reply to christine502

definitely chew!

Heloise profile image
Heloise in reply to

I received my last bottle direct from the company and they do not seem to be like the old formula. It is very hard and starchy tasting.

in reply to Heloise

I had some like that directly after the reformulation in 2009.Now they are softer and work better.

christine502 profile image
christine502 in reply to

Those of you who noticed a recent difference in Armour, when did you notice it? I've read that most felt it somewhere in late 2012, but does that mean pills that were manufactured in late 2012? My current Armour pills expire in early 2014, meaning that they must have been manufactured some time in early 2012?

When I was first put on Armour, in November 2011, I was prescribed the smaller pills (up to 120 mg). I felt great on them for nearly six months, and then was put on 240 mg and 300 mg pills. I started feeling worse within days. Someone suggested to me that I had been given batches of old (pre-reformulation) Armour the first time around, and that would explain why I felt great on it. However, I cannot remember those pills tasting as sweet as Erfa. I chewed them up, as I had read you should, felt fine, and that was it. However, the 240 and 300 mg pills tasted so awful that I stopped taking them for that reason alone. But they were not grainy, like many have described the reformulated Armour, and melted almost immediately when crushed. The biggest problem was the taste. On those pills, my FTs dropped to midrange, but afterwards I wondered if that was because I did not raise it enough during this cold, long winter (labs done in February)? I cannot prove there is a difference between the various strengths of Armour, but there definitely is a difference in taste; the smaller pills have a slightly sweet taste (although not nearly as sweet as Erfa which is like candy), whereas the larger pills are just awful (I cannot even describe the taste). I know some crush the pills and mix with honey, and I could do that, but first I need to be convinced that all strengths are equally good and effective?

Also, on the smaller pills (up to 120 mg, that I combined to 270 or 300 mg), I started losing a lot of water; 5 kilograms in in a few weeks, which proves to me that they must have been effective.

I always thought that Armour was good for two years after it was manufactured. However, a friend of mine who's on Erfa bought some bottles last year (summer of 2012) which expire in late 2015, so they are good for more than three years. Maybe that is true for Armour was well, and is it possible that I got the old formula the first time around? I really felt great on it, took 270 mg in the summer and 300 mg in the winter, and had no problems whatsoever. It was when I switched to the larger pills that the problems started. Someone even suggested that only the smaller pills were reformulated a second time?

If I understand it correctly, many on Armour who went downhill after the 2009 reformulation are now happy with it? May I ask which strengths you're taking?

in reply to christine502

I used to be on 2 1/2 grains when i first started taking armour, but 15 years later I need 1 1/2 grains a day plus 75mcg thyroxine.Thyroxine doesn't disagree with me like it does with some people. I have heard we need less meds when we get older.

christine502 profile image
christine502 in reply to

Can I ask when the pills you are happy with expire? Mine expire in November 2013 and February 2014 respectively.

in reply to christine502

My pills expire around the same time.

christine502 profile image
christine502 in reply to

May I also ask which strengths you are currently taking? I'm trying to figure out if there is a difference between the smaller pills (up to 120 mg) on the one hand, and the larger pills on the other.

in reply to christine502

I buy one grains and chop some into halves.I'm sure they are all OK.

christine502 profile image
christine502 in reply to

Thanks! I'd be interested to know if anyone has taken the 180, 240 or 300 mg pills since the reformulation and, if so, did you find them as effective or less effective than the smaller pills?

i struggled a bit on Erfa 2 grain tablets and yet did great on the half grains. i put this down to the amount of fillers in the larger tablets and the the difficulty in estimating how much t3 i was getting each bite. I ordered some NatureThroid half grain tablets and they are brilliant, have had no symptoms at all on them. It did help that I raised my ferritin from a paltry 30 to 60 too though. Are your iron, B12 and D all high in range?

PinkNinja profile image
PinkNinja in reply to

That is really interesting. Do you chew your tablets. I can't do this, it makes me almost vomit but I have started to cut my 4 grain NatureThroid tablets into quarters and I *think* I have noticed a slight improvement.

Jane104 profile image
Jane104 in reply to PinkNinja

I've just recently started taking Nature Throid and I chew them. I think they taste nutty. ;-)

christine502 profile image
christine502 in reply to

Yes, they were lowish two years ago, so I've been on supplements since, and they are all optimal now. I need to take 10.000 IU of vit D3 all year round to maintain optimal vit D levels. My lab uses the range 70-90 for ferritin, and my latest reading was 88 (up from 56).

shaws profile image
shawsAdministrator in reply to

Glad to hear you are getting on well with N T. It is amazing how different you can feel when eventually you pick the right NDT which suits.

i don't chew mine Carolyn, although i quite liked the taste of Erfa ;-)

SharonH profile image
SharonH

Can some one personal message me as to where their Nature Thyroid from please

sandrab1969 profile image
sandrab1969

that is fine by me.x

christine502 profile image
christine502

Has the second reformulation been confirmed by Forest, or is it based solely on the testimony of patients?

shaws profile image
shawsAdministrator in reply to christine502

This is from STTM

(Armour was reformulated in 2009, supposedly decreasing the amount of dextrose and increasing cellulose. As a result, numerous patients reported problems with it and a return of hypo symptoms. We figured out we needed to chew it up to release the NDT from the excess cellulose and hardness. In late 2012, patients began to see some of the tablets softer again.)

Heloise profile image
Heloise

Christine, I've written my experience here this past week on several occasions. I got a new batch of Armour in Feb and felt they weren't effective. I use the 30 mg size. I asked my pharmacy what the batch # was and called Forest Pharmaceuticals. They were very concerned about the weight gain and possible loss of effectiveness. In the interview I told them I also thought they seemed harder to chew and they wanted to know WHY I was chewing them. Well, they said that no one should chew the tablets. Actually I hated chewing them. I much prefer Erfa but can't get it. In the end, I have decided to try T3 only which I have ordered myself and it seems to be working as well as anything although it's only been three weeks. I may never use the new batch of Armour that Forest sent me but if I do hear from them, I will post it here.

christine502 profile image
christine502 in reply to Heloise

Heloise, that's very interesting, thanks for sharing! I know Forest claims that the reformulated Armour must be swallowed, but most recommend that you chew the pills up first to break down the cellulose (STTM is adamant you must crush or chew the pills before swallowing). I agree chewing the pills up is distusting, especially the larger pills that taste awful. I'd love to swallow the pills (although the bigger ones would have to be split first, because there is no way you can swallow a 240 mg pill whole without choking).

Actually, I have been chewing up Erfa lately (STTM recommends taking it sublingually but I just don't like to take meds that way, plus Erfa takes forever to melt). But I know the manfacturer recommends swallowing them.

Besides from saying that you should swallow the pills, did Forest have any idea what the problem might be? There have been occasional reports about bad batches of Erfa as well. Did you take Armour before this incident without problems?

Heloise profile image
Heloise in reply to christine502

Yes, christine, I finally got an Armour prescription after being on Synthroid for six years (of damage). Now that I'm ten years older on Armour, I think the aging process makes it more difficult to utilize any medications and maybe especially hormones very well so I decided to go straight to T3 since I could not raise my free T3 or free T4 above the bare minimum of normal plus I was collapsing in the heat. I've been playing golf and managing now but I am in pain most of the time so I'm hoping T3 might make a difference. I looked at old blood tests and am horrified how high my TSH was for the most part so I was undermedicated but I did not know then what I know now and I guess that goes for doctors as well and I'm in the U.S.

I hope to hear from Forest if they are doing the analysis. I will definitely call them if need be.

christine502 profile image
christine502 in reply to Heloise

Could there be any truth to the rumour that the FDA forced Forest Pharmaceutical and RLC Labs to reformuate their products? It really is strange that RLC chose to reformulate Nature-Throid and Westhroid in the exact same way as Forest unsuccessfully reformulated Armour.

But then NP Thyroid (without cellulose) appeared on the US market, which is inconsistent with the rumour that the FDA is trying to force all NDT products off the market.

Anyway, I cannot understand why Forest would choose to reformulate a product that worked so well for so many.

Heloise profile image
Heloise in reply to christine502

I will ask them why the reformulation. I thought people may have complained about any sugar content. It is odd that Armour was priced here at about $16 for 90 l/2 grain. You couldn't get it just anywhere which I assume meant that it was not profitable, and then it went off market. That's when I started ordering Erfa from Canada and it was just as reasonable. Now my Canadian Pharmacy said that Erfa was not available and of course Armour came back on the market so without a prescription card, I would pay $58 for 90 tablets of one grain Armour here in the U.S. But with the discount I pay $28. I don't understand any of it, wish I could buy my own pig and do it myself!!

helvella profile image
helvellaAdministratorThyroid UK in reply to Heloise

I suspect that there may be no way of avoiding all sugar content. So far as I am aware sugar (whether lactose, sucrose or possibly some other sort(s)) is the diluent used in production of Thyroid USP powder. However there might be alternative non-sugar diluents.

Not sure where you are on Westhroid. Now there is only Westhroid P which is a significantly different formulation - only Thyroid USP (which may contain lactose) and Inulin.

Rod

christine502 profile image
christine502 in reply to helvella

So Westhroid no longer exists as we knew it; I believe it was identical to Nature-Throid, just sold under a different brand name? As far as I know, Westhroid P is not widely available in Europe (yet), but it's a good thing it doesn't contain cellulose.

christine502 profile image
christine502

This morning, I went back on Armour. It's been 36 hours since my latest dose of Erfa, and the itching is all but gone. Should I interpret this to mean that I'm reacting to one of the fillers in Erfa (I cannot imagine which one, though; dextrose or talc)?

I can only hope that I will feel fine on Armour. So far, so good, but it's only been one day, so it really is too early to tell. Armour and Erfa are the only options available where I live, although I know that pharmacies in Switzerland carry NP Thyroid by Acella. Maybe it would be possible to order from them even if the script is for Armour...? I think you can order from Switzerland in the EU without problems with customs.

Desiccated thyroid from Thailand used to be available via drop shippping to the EU, but that is no longer the case (the online pharmacy seems to have disappeared), so the only way to get it now seems to be to order it directly from Thailand. I checked with the customs authorities where I live, they said it would be illegal to import it, so I'd always be nervous if I ordered it.

But for now, I'm just keeping my fingers crossed Armour will work for me. It would save me so much money and trouble if it did.

I read somewhere that you can take a supplement called Candex with Armour, and that it will break down the cellulose?

The price of Armour has doubled in Belgium in recent months. A friend of mine ordered eight bottles of Armour from a pharmacy, and they charged her 1000€...meaning she will have to pay ca 2000€ a year if she stays on her current dose. I think that is ca 1600 GBP.

I have no idea, though, if the price has gone up in the US and elsewhere as well, or just in Belgium...?

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