Help with compounding ingredients : Considering... - Thyroid UK

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Help with compounding ingredients

Litatamon profile image
34 Replies

Considering having NDT compounded, to not have lactose & as few ingredients as possible.

We do not have a lactose,-free levothyroxine in Canada. And I know Thyroid S has lactose.

The pharmacist has asked me about cellulose as the filler, and how I do on that. I have no clue & when researching it comes up as a red flag on STTM. And they talk about ginger, vitamin c or something else that I can't remember, as a possible filler.

Any insights?

And helvella Erfa 'Thyroid' contains lactose, correct?

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Litatamon profile image
Litatamon
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34 Replies
RedApple profile image
RedAppleAdministrator

Litatamon, The manufacturers won't publicly divulge the full ingredients of Thyroid S. Have you contacted them to confirm that it does contain lactose though?

RedApple profile image
RedAppleAdministrator in reply to RedApple

'We do not have a lactose,-free levothyroxine in Canada'

Are you allowed to import for your own use? If so, maybe you could buy your own from UK or Europe?

Litatamon profile image
Litatamon in reply to RedApple

Hi Red Apple,

Thank you.

We have strict -& ridiculous - importing laws in Canada. And they are quite the interesting read, as non-Canadians visting have leeway as do new Canadians & landed immigrants.I am truly happy for both & understand the thought process. Regardless it is unfortunate for the rest of us.

Litatamon profile image
Litatamon in reply to RedApple

I have not. Thank you for the suggestion RedApple.

I have seen an ingredient list on another site though, apparently it was given to a doctor who requested it. But you're right they do not normally divulge.

And although I felt good on Thyroid S in general I had gas & bloating. And a TSH of 32 on a large amount of Thyroid S - which of course could be absolutely anything, but there are some medical journals out there about lactose being an issue with absorption.

-------

I have had daily gas for over a year, since my thyroidectomy. Never had it pre-operation. And did have one good lab out of about six & the gas was still there during those six to eight weeks.

(My second batch of Thyroid S was seized at the border, apparently has never happened before for any other Canadian.)

helvella profile image
helvellaAdministratorThyroid UK in reply to Litatamon

Trouble is, I have seen at least two different ingredient lists. All purportedly from the company. All from years ago.

I suspect that they might be somewhere towards reality, we really have no idea how much they diverge.

Litatamon profile image
Litatamon in reply to helvella

Absolutely helvella.You're right. We really do not know, I should have communicated I suspect one of the lists is correct with lactose, due to both unwanted symptoms continuing and absorption issues.

helvella profile image
helvellaAdministratorThyroid UK

Yes and no.

In exactly the same way that Nature-Throid and WP Thyroid said, lactose is used in the production of the Thyroid USP powder. Its purpose is to dilute the powder to a standard strength. The amount therefore varies depending on the original powder.

RLC used to say how much lactose that could be.

However, there is no further lactose in the product.

Each off-white to light amber-colored tablet, embossed “ECI 30”, “ECI 60” or “ECI 125” on one side. Contains 30 mg, 60 mg or 125 mg of desiccated thyroid derived from porcine thyroid glands containing lactose. Nonmedicinal ingredients: cornstarch, magnesium stearate, sugar and talc. Energy: 1.2 kJ (0.28 kcal)/30 mg tablet; 1.1 kJ (0.26 kcal)/60 mg tablet; 2.2 kJ (0.52 kcal)/125 mg tablet. Gluten-, paraben-, sulfite- and tartrazine-free. Bottle of 100 or 500 tablets.

Store at controlled room temperature 15 to 30°C.

eci2012.net/product/thyroid/

Litatamon profile image
Litatamon

Thank you helvella - I appreciate it, so regular NDT might be worth a go first. It is hard to decide as I can't make a single error with my funds.

-----------

Any insight on alternate fillers? Thank you.

Imaaan profile image
Imaaan in reply to Litatamon

Rice? I think they use it in Metavive

Litatamon profile image
Litatamon in reply to Imaaan

Thank you Imaaan. I will talk to him.

One compounding pharmacist already noted, "Well aren't I going to be on my toes with you?"

Why yes you are! I have a pile of educators at hand. 😁

Imaaan profile image
Imaaan in reply to Litatamon

Keep them on their tippy toes ;)

helvella profile image
helvellaAdministratorThyroid UK in reply to Litatamon

Very difficult because the compounders make use of a very limited range of substances.

And we have next to no understanding of how they affect the product.

Part of me would probably want to choose plain sugar. OK - not good for us. But, if not diabetic, could well be as safe as anything. We know the issues yet so many still consume it in tea, coffee, soft drinks, cakes, sweets, etc.

Litatamon profile image
Litatamon in reply to helvella

I believe that was the third option mentioned on STTM. And I did think Hmmm.

jamesal0 profile image
jamesal0

You could go to the butcher and get raw lambs or pigs thyroid. That has always been my plan if NDT is legislated out of existence in Australia

Litatamon profile image
Litatamon in reply to jamesal0

Well compounding is my limit right now James. 🙂

Rhannii7 profile image
Rhannii7

Ask the compounding pharmacist what the raw powders diluent is, thats in there prior to the pharmacist adding additional filler , in Australia the imported extracts contain dextrose or lactose, both have caused me mega grief

Litatamon profile image
Litatamon in reply to Rhannii7

Very helpful. Rhanni7, thank you.

I will.

Hi Litatamon.

I've been wondering the same thing about NDT fillers.

My compounded NDT has cellulose which STTM website doesn't think much of (and I'm questioning due to reactions I'm having) and they recommend powdered Acidophilus or oil of your choice.

Not sure if the Acidophilus or oil would work for me.

Hope there is someone who uses an alternative and can let us know.

Litatamon profile image
Litatamon in reply to

Yes hopefully. Thank you Dioryth. My goodness, there is nothing like a thyroid issue with rapidly gaining a boatload of information! Insert smile.

And at times spreading it to an unsuspecting audience.

My sister, who does not have a thyroid issue, phoned me about how she easily just followed a CSI mystery about a victims' t4 levels. Laughing.

in reply to Litatamon

🙂

milkwoman profile image
milkwoman

I’m in the US and my LDN is compounded using a base of Lactobacillus acidophilus as I could not tolerate the “normal” base of microcrystalline cellulose (which is also referred to as Avicel).

Litatamon profile image
Litatamon in reply to milkwoman

Thank you milkwoman. Appreciate it, I will ask him about it.

in reply to milkwoman

Hi milkwoman

Just wondering what your symptoms were with the microcrystalline cellulose?

I've been having sore throat, coughing and spluttering in the second month of NDT and wondering if it is the cellulose.

milkwoman profile image
milkwoman in reply to

For me it was GI issues and well as joint pain. Took a really long time to figure out the culprit!

in reply to milkwoman

Good that you did work it out. 👍

Rhannii7 profile image
Rhannii7 in reply to milkwoman

Was that because of cellulose in your medication? Im so sick the current ndt im on has lactose in it. My pharmacist swapped suppliers before Christmas, I kept calling asking what had changed they kept saying nothing. I tried to order what I was on prior to that and had it made elsewhere and im sure they added cellulose to the mix, sicker still, so back on the one with lactose. Im Bout ready to give up on ndt. Im in pain all the time on it

milkwoman profile image
milkwoman in reply to Rhannii7

yes, I can’t tolerate microcrystalline cellulose so my custom compounding pharmacy offered me other options and the Lactobacillus acidophilus worked.

Rhannii7 profile image
Rhannii7 in reply to milkwoman

Would the lactobacillus acid philosophy not also have cellulose in it ? I know every probiotic formula i have tried to buy has cellulose in it ?

milkwoman profile image
milkwoman in reply to Rhannii7

No, no cellulose. I’m not sure what other binders (if any) they need to use along with the acidophilus and the LDN. I no longer keep the ingredients list that comes with every refill because I’ve been taking this medication for so many years now (just picked up a 3-month supply on Friday and the list was tossed into the recycling bin picked up this morning). But I do know there’s no microcrystalline methylcellulose.

Rhannii7 profile image
Rhannii7 in reply to milkwoman

Interesting , I just looked up some of the ingredients in the acidophilus and its all got cellulose in it over here in good old Australia

milkwoman profile image
milkwoman in reply to Rhannii7

You can’t compare commercial products to compounded products where the ingredients are created specifically to a patients needs. Also, microcrystalline methycellulose (MCC) and cellulose are two different things. Neither are in my compounded capsules. Note: Cellulose CAN be used to make the actual capsules themselves. Mine however, are gelatin.

Rhannii7 profile image
Rhannii7 in reply to milkwoman

I meant microcrystaline cellulose

MindfulMoments profile image
MindfulMoments

You can pull apart the cellulose capsule and pour the ndt onto a teaspoon and take it with water. I have done that, and I know someone else does too to avoid ingesting the cellulose.

helvella profile image
helvellaAdministratorThyroid UK

Erfa does contain some lactose. However, the quantity is not declared.

An issue that used to be very much swept under the carpet is that some Thyroid USP contains lactose. At one point, RLC (Nature-Throid, etc.) admitted this on their website and added some information about quantities.

There is a small number of substances that can be used (as diluents) according to the formal USP requirements. However, once we are outside the USA, it is not clear how well manufacturers follow the USP. Lactose and sucrose are both permitted - plus a few others.

helvella's medicines documents (UK and Rest of the World) can be found here:

helvella - Thyroid Hormone Medicines

helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.

I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.

helvella - Thyroid Hormone Medicines - UK

The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc.

helvella - World Desiccated Thyroid

Contains details of all known desiccated thyroid products.

helvella - Thyroid Hormone Medicines - RotW

Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.

The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.

helvella.blogspot.com/p/hel...

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