(This page has been updated to current date and time. Enjoy!)
I received in an email from Sue in Australia.
Sue’s son has complex difficulties with a diagnosis of sarcoidosis, an inflammation disease that can occur throughout your body. From the disease, says Sue, he was fairly emaciated, which is common with Sarcoidosis (emaciated means he was basically “skin and bones”).
He was also born without a thyroid. So he’s been on compounded natural desiccated thyroid–the way thyroid is made in Australia–and of course, the filler has been cellulose.
When she read from STTM (see here) about the problems with cellulose and the way it binds the desiccated thyroid–making the compounded thyroid less effective–she approached a biomedical doctor to have the filler changed to acidophillus as suggested. He instead suggested glycine powder. Glycine is a non-essential amino acid and neurotransmitter which helps with digestion, central nervous system health, besides create muscle tissue and convert glucose into energy.
And, says Sue, “the immediate reaction was startling as my son who had been suffering from emaciation for years with a diagnosis of sarcoidosis put on over a kilo in much needed weight in the space of little more than a week.” In fact, she now wonders if much of his problems has been related to his lack of thyroid, and the cellulose filler making the medication less effective, all along!
Says Sue, “His case is a complex one, having been born without a thyroid gland, but the removal of cellulose ( or the addition of glycine or both) have certainly heralded some exciting changes”.
She also added, “There must be more to this than meets the eye. I did have to reduce his thyroid extract dose as I’m assuming that the binding effect of the cellulose meant he was on a higher dose than necessary to get a reasonable result and/or perhaps glycine enhances absorbtion. I’m sorry there are still quite a few questions to be answered and the results of a blood test in a few weeks time will be interesting. I’ll keep you updated.”
Bottom line: adding cellulose as a filler with desiccated thyroid has been a disaster, as patients discovered after both Armour by Forest Labs and Naturethroid by RLC Labs were reformulated in 2009 and early 2010, respectively.
One thing anyone can try is chewing up their Natural Desiccated Thyroid which can release the thyroid from the binding cellulose. You can also choose to use a mortar and pestle to pulverize the tablets, and add a touch of honey or sugar, which helps with digestion. There are some NDT’s which do not have cellulose.
If you are on compounded desiccated thyroid, ask the pharmacist to change the filler to acidophilus. Or ask about Glycine (or L-Glycine) to see if it is good for your particular situation.
All good alternatives for thyroid treatment are found here.
****************************************************
** Have you Like the STTM FACEBOOK PAGE? It gives you daily information, tips, and inspiration. 🙂
** Thank you!! A hearty thank you goes to those who have contributed to the hosting fees for STTM–a patient-to-patient educational site! I can’t do it alone, so you are VERY appreciated. And if you would like to contribute to the hosting fees (which I do not get: the host server does), go here. Stop the Thyroid Madness is YOUR site.
** Vitamin and mineral deficiencies: It’s common for thyroid patients to be low in iron/ferritin, Vit. D, magnesium, potassium and more. Have you checked your levels lately?
Important notes: All the information on this website is copyrighted. STTM is an information-only site based on what many patients worldwide have reported in their treatment and wisdom over the years. This is not to be taken as personal medical advice, nor to replace a relationship with your doctor. By reading this information-only website, you take full responsibility for what you choose to do with this website's information or outcomes. See the Disclaimer and Terms of Use.
Write a new comment below
19 Responses to “Sue’s remarkable and shocking story about cellulose as a filler in our thyroid meds”
Ivy
What if the capsules are cellulose (veggie capsules) based? What are our options for compounding for the capsule? I cannot tolerate any form of cellulose.
Janie Bowthorpe
That is where you talk to the Compounding pharmacy, if that’s what you are referring to.
Anna
Thank you, Janie, I will! Scary reading…in Belgium, where I live, prices have literally tripled in recent months. I have been wondering whether I should give Armour another try, as Erfa has been problematic for me as well (also of very inconsistent quality and potency in the past year or so), but I will not even try Armour again…if I have to, i will order Thai NDT!
Anna
Nobody has posted in a while, but I hope it’s still OK to do so.
I recently read that Actavis (who bought Armour from Forest some time ago), apparently reformulated the drug somehow, and patients are now having even more problems with Armour. Is that true???
Janie Bowthorpe
Anna, sign up to receive the blog posts by mail at the bottom of any page on STTM. That way you won’t miss anything. 🙂
Here’s what you are looking for: http:// http://www.stopthethyroidmadness.com/2015/09/19/armour-and-unhappy-thyroid-patients/
Anne
After the Armour change in 2009, I went for compounded and they would only give it to me with Avicel (microcrystalline cellulose). It didn’t work for me. I felt worse and worse and finally one day when I was scared, I took an old 30mg tablet that was laying around and felt instantly better. I tried to convince the pharmacist but they couldn’t give me anything other than that as filler unless I wanted lactose which gave me a stomachache that lasted two days after one dose.
Lorie
Tammy…
Call universal drugstore 1.866.456.2456. They might take a script for armour and fill it with Erfa, no need to get doc involved at all ;).
Lorie
Frances, what is the name of this pharmacy? I’m sure others who use compounded thyroid would like to know!
Tammy
Wow Sue glad you found somthing to help your son. I hate the reformulated Armour. I knew it was not working like the old version. I have been taking the reformulated armour around a year now. Just started smashing it to powder 5-6 wks ago. I use hubbies rubber mallet. LOL!!!Still must not be working. I just had labs I orderd online from Direct Labs. They are running a few thyroid specials this month so I had one ran. Did not want to pay for all the tests I need since I knew they were not going to come out with the results they should. I’m at a loss & so tired of trying to get my thyroid where it needs to be. My Free T3 is 2.4 with their range at 2.0-4.4, Free T4 0.55 their range 0.82-1.77, TSH 47.540 with their range 0.450-4.500, TPO was 295 their range 0-34 & TAA is ‹20 range 0-40. Have never had a TPO or TAA test but they were included in the package I ordered. No telling what my doctor will say when I see him later this month except why did I order my tests online & we need to put you back on levothyroxine or levoxyl. Not happening. I’m going to have to try & convince him for compounding or ordering Erfa.
frances
Thank god for this website. I had been doing really good on the compounding at one place and had found out they used avicil the micro cellulose. then my dr switched pharmacys to a cheaper one for her patients as the first one was charging 50 per month supply and was very difficult with her. the new supply from the new pharmacy came with the cellulose filler and i went downhill fast. my hair that had started to come back lush. fell out everyday. I didnt know what was wrong. if my levels were off again or what. then i did some research and found this site and all the things about methyl cellulos I copied everything and emailed to my cell phone and took it to my dr’s office. she was great and listened read my phone notes too . she ordered the new pharmacy to make it with lactose and they did with no change of price. i got my first order today 3 months supply for 45 bucks wish me luck! (btw it emmeditaly smelled different smells more like the old armour and i hope this works. the one with cellulose smelled so strong like a chemical smell that made me gag.) thank you for this site so much
Janet
What a relief for Sue in Australia. Amazing story.
QUESTION for Janie: Do you or one of your subscribers have experience in a program of adrenal support ? I do take ISOCORT. (At this point prefer to stick with non-prescriptions.) Isocort doesn’t nurture the adrenals, it is an adrenal; I hold out the hope that mine can recover with nurturing. As you’ve suggested to only take thyroid meds (or even over-the-counter thyroid supplements) without addressing the other hormones isn’t a whole-health plan. There are countless adrenal support supplements one can buy but WHICH ones truly make a difference long term? What about life style changes one should make (diet, exercise, cutting back on activities, etc)? Within exercise category- are there yoga positions that stimulate the adrenals? Maybe we need a “Stop the ADRENAL Madness” website. Thanks Janie for all that you do!
(From Janie: Join NTH Adrenals. They also have a website for info on nurturing supplements and the use of cortisol to give your adrenals a rest–the latter is why cortisol can be important. https://stopthethyroidmadness.com/talk-to-others )
Johann Mitchell
Thanks for all the wonderful tips about dealing with hypothyroidism!
I want to mention something that was very important to me.
I was having aching bones, and the doctor finally decided to have a test done for vitamin D. The results were delayed, and I decided to try taking a D supplement, with wonderful results at first.
Then I got the results back from the test, and before supplementation, my vitamin D level was considered “normal.”
I saw another healthcare professional not long after that, and she asked how much D I was taking (4000 IU). She said that many of her other patients do well with MUCH higher amounts of D, and she suggested I raise the dose. I’m now taking 10,000 IU per day, and the fleeting improvement I saw at first seems to be permanent at that dose.
Although it IS possible to overdose on vitamin D, it’s really hard to take too much. The nurse practitioner said that they normally recommend 50,000 IU for about three months to begin with for people who are low on D, and you probably couldn’t hurt yourself if you continued that dose.
The point is that if you take one or two little capsules, you’re probably not helping yourself enough to notice.
And don’t be afraid to go out in the sun for a bit without sunscreen! Make your own vitamin D! Recent studies are showing that the sun isn’t as bad for you as we’ve been told for the last twenty or thirty years. And many sunscreens have been discovered to have carcinogens in them, which is probably behind the rising rates of skin cancer. I’m not advocating enough exposure to burn, but a bit of sun is good for you!
Louise
Diana,
How did you function with such a high TSH? What were your FT3 and FT4 levels? My TSH just brushed over 3 (the others were below level) and I found it difficult to make it through some days! Good luck on your NDT journey.
Diana Marshall
I have been on Synthroid for 25 yrs. I was told about Armour and after a year of requesting, my dr allowed a trial period and I’ve been on it for almost 2 mths, with no affects. My last TSH was 40, so she had increased it to 3-60mg @ day. I read here about chewing the Armour and although I find chalky meds terrible, I did it. I thought it was my imagination, the first day, the second day…I’ve now realized that chewing it was the answer to the med being utilized in my body. I am still in the recovering mode, but so thankful that I am not lightheaded, hurting all over and my head has stopped pounding. I’m anxious to see what my next lab tests show.
Thank you for posting this little bit of information. I’ve called my pharmacy and have passed the info; which they gladly rec’d. I’ll print your post and take it to them, asap.
Kelly
I’ve just started Armour. Is it necessary to chew them up if I’m new to it? I read somewhere else that only patients that were on the old Armour do.
(From Janie: Chew it up.)
Suzanne Williams
I’ve recently encountered problems with obtaining Erfa (the pharmacy’s blunder, not an overall supply issue) and had to order compounded porcine thyroid from a nearby pharmacy. The pharmacist uses a microcrystalline cellulose product called Avicel which she claims doesn’t have the binding issues of regular cellulose. When I asked about substituting acidophilus, she said it would triple my price and, since they didn’t carry the product, take a week longer to fill the prescription. She’d never heard of L-glycine being used as a filler and didn’t have any of that in stock, either.
My questions: Are the binding issues with this microcrystalline cellulose product Avicel truly less than with regular cellulose? I open the capsule and pour the contents beneath my tongue; the contents dissolve within seconds. No way I can chew it because it’s gone so fast. Do I still need to use honey/sugar with it?
(From Janie: it’s the “tablets” called Armour or Naturethroid that patients are chewing up. Not compounded. As far as Avicel—that is simply microcrystalline cellulose. Yes, “micro”crystalline cellulose are smaller structures than “methyl”cellulose, but it’s still cellulose. Also, RLC Labs stated they moved away from using methylcellulose and only now use microcellulose….yet people have reported a return of symptoms with the “new” Naturethroid and it’s microcellulose. As a result, we suspect that even Avicel with its microcellulose content can still be a problem.)
Amy Matthews
Dear Sue and Janie,
Thank you for posting. Sue, I’m very glad to hear your son is responding well. This is really heartwarming.
I am also Australian and order SRT3 and other related products through a compounding chemist. This is very good information and I will also pass this on.
With thanks and kind regards, Amy Matthews
Allison
Hi Janie,
Thanks for posting this – anecdotally, from conversations on the Australian section of Real Thyroid Help, not many of us have done well with compounded dessicated thyroid in Australia.
I’m going to pass on this information and the other original post about cellulose to my pharmacist (Tass Pappas in Ramsgate, Sydney) as he is very open to trying new fillers.
thanks
Allison
Andrew Poretz
Is Erfa okay to swallow or should I be chewing these as well? (I’ve been on Erfa since late 2009.) I haven’t ever done that.
(From Janie: do it sublingually. Or swallow it. Erfa doesn’t have the same problem)