Desiccated thyroid v Levothyroxine: I recently... - Thyroid UK

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Desiccated thyroid v Levothyroxine

Jane104 profile image
18 Replies

I recently emailed Erfa and the makers of Nature-Throid primarily about the consistency of their products. I've had a reply back from Erfa. They didn't exactly provide what I was looking for but they did send me a copy of the study published in March 2013 which Rod blogged about here. Is there any way of sharing a pdf?

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Jane104
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helvella profile image
helvellaAdministratorThyroid UK

There is no built-in way on this site.

What you can do is use any of several "cloud storage" sites (I usually use Dropbox). Sign up. Copy the file to the "public" folder. Get a link to it and post that.

You can use this link to join Dropbox:

db.tt/bJkSjoy

(and that gives me a bit more space!)

Rod

Jane104 profile image
Jane104 in reply to helvella

Brilliant thanks. Hope I've done this right.

dropbox.com/s/xb9kt2w90ygnn...

Jane104 profile image
Jane104 in reply to helvella

Enjoy the extra space!

helvella profile image
helvellaAdministratorThyroid UK in reply to Jane104

Well done - that does indeed work. And thanks!

Jane104 profile image
Jane104

One of the things it does say is:

Table 7. Recommended Conversion Based on Results From This Study

Dose

L-T4,mcg 88 100 112 125 137 150 175 200 250

DTE (mg) 60 68 76 85 93 102 119 136 170

which is right in the middle of the 75 / 100mcg per 1 grain we were talking about the other day!

galathea profile image
galathea

Good find, but I have a problem with their tests, If half the people tested preferred the NDT, but the study couldn't find out why, then they simply are not measuring the right thing.

I take NDT. ( self funded) and prefer it to t4 or t4/t3 combination. The reason I prefer the NDT, is that life feels smoother and easier to deal with. Ok, that's the reason, what are they going to call that and how are they going to measure it?

I haven't lost weight on NDT, even though I have energy and go to exercise classes, 4 times a week, as well as having two allotments and gardening for other people 4 days a week. So the test results which allude to the fact that people might prefer the NDT because of weight loss, don't apply.

But I wouldn't go back to the irritated choppy feeling I get with the synthetics. So.... How are they going to measure smoothness? They need to measure brain chemistry.

Xx

Jane104 profile image
Jane104 in reply to galathea

Agreed, they must be missing something - they do refer to "relatively insensitive methods". I think the study they were recruiting for in Dec 12 is a larger follow up to this so maybe something will come out of that next year. (Don't think this is the same study as it took 32 weeks and published in March).

Good to hear it's working for you - come and do my garden anytime! Just waiting to hear if they'll let me try it on NHS.

helvella profile image
helvellaAdministratorThyroid UK in reply to Jane104

I hope they allow the recipients to have higher doses as some seemed a bit under-treated. It is always going to be difficult in such trials to balance everything to achieve a scientific analysis that makes sense but I got the distinct impression that this study had been towards "unfair" to desiccated thyroid by their dosing decision.

Rod

ellarose1234 profile image
ellarose1234

Amazing! It states as a conclusion:

"Conclusion:DTE therapy did not result in a significant improvement in quality of life; however, DTE

caused modest weight loss and nearly half (48.6%) of the study patients expressed preference for

DTE over L-T4

. DTE therapy may be relevant for some hypothyroid patients."

In other words almost half felt better and lost weight on DTE. Only 18.6 preferred T4 and the other 32.9 had no preference, and they say DTE therapy didn't result in a significant improvement in quality of life???? What planet are they on? This is a prime example of how they manipulate the results. The "don't knows" added to the "preferred LT4s" add up to slightly more than those who preferred the DTE .

I'm raging here grrrrrrrrrrrrrrr! By the way I'm happy on LT4 but hate the way DTE is almost impossible for those to get who need it.

ellarose

Jane104 profile image
Jane104 in reply to ellarose1234

Yet further up it says:

"In the subgroup analyses, those patients who preferred DTE lost approximately 4 lb during the DTE treatment compared with L-T4 treatment. In addition, their general well-being and thyroid symptoms were significantly better (as evidenced by lower GHQ-12 and TSQ scores). The higher AMI also supports an improvement in cognitive function. These findings were absent in those who preferred L-T4 or had no preference. It is possible that DTE treatment offers subtle improvements in well-being that may not be detected by the relatively insensitive methods used in the study".

I don't think it's all negative and of those who did express a preference there were more than twice as many that preferred DTE.

ellarose1234 profile image
ellarose1234 in reply to Jane104

I think DTE came out of it very well and to say "it didn't significantly improve quality of life" is very misleading. Perhaps they couldn't put "it didn't improve quality of life..."because it obviously did!

helvella profile image
helvellaAdministratorThyroid UK in reply to ellarose1234

More scientifically, I think they said that according to the results of their questionnaire approach to assessing quality of life, it didn't significantly improve quality of life. Which is rather different and the fact that they reported this conflict is important.

Also, that leaves the door wide open to trying to understand why this questionnaire approach did not accord with how patients themselves felt. Hopefully they will use a more sophisticated way of determining quality of life in future.

I was not impressed by the questions asked, etc. but they were simply using a standard assessment.

Rod

Jane104 profile image
Jane104 in reply to helvella

Thinking about it, 16 weeks isn't really long enough to significantly improve quality of life. It might improve symptoms and make you feel better in that short time, but it's not going to find me a job, improve my bank balance, sort my house out, get my social life back etc in less than four months.

SilkyJ profile image
SilkyJ in reply to Jane104

I have never lost any weight with NDT so this study is biased. If I didn't have a such a bad conversion problem, I would be using it without hesitation because, as Galathea says, it does make one's life 'smoother' and easier to handle. I generally get a window of a few weeks of a great feeling of 'normality' before becoming T4 toxic again.

I have never felt that way on T3 (I can't touch T4 - it's poison).

Silky x

I contacted Erfa a while back and this is their reply:

Thank you for contacting Erfa Canada Inc. Our product has been approved

for more than 40 years and never had a recall contrarily to the synthetic

thyroid medication. Furthermore, Health Canada keeps a very tight records of

all the side effects that occurred since 1967. This record is available in

the Health Canada website. These records demonstrate the safety of Thyroid.

One argument which is erroneous is the fact that our products lacks

consistency. This is inaccurate since our specs (checked by the health

authorities) require a variation in dosage of up to 10%. After reviewing our

records we rarely exceed a 5% variation from batch to batch.

All the certificate of analysis are available for consultation in our

office in Montreal. We cannot send a copy of those certificate since it is

confidential information but the API is checked for T4 concentration and we

regularly have Health Canada check our documents.

Jane104 profile image
Jane104 in reply to Hashi_since_age9-1988

Hi, that's pretty much what they told me. I just don't understand why the don't produce definitive proof. You can go to Montreal and consult the documents. Health Canada check the documents. They can tell us it's within 5% (actually they said 6% to me!). It's like chinese whispers.There must be a way of publishing test results without revealing sensitive information. And surely it would be to their benefit?

Hashi_since_age9-1988 profile image
Hashi_since_age9-1988 in reply to Jane104

What I wasn't sure about was whether this meant +/- 5% ie. 10% variation or +/- 2.5% = 5% variation

Jane104 profile image
Jane104 in reply to Hashi_since_age9-1988

I found this:

"The specifications for Thyroid USP (porcine) powder require that each grain contains levothyroxine (T4) 34.2-41.8 mcg and liothyronine (T3) 8.1-9.9 mcg. This produces a T4:T3 ratio of 4.22:1 to meet the stringent

standards for a U.S. Pharmacopeia monograph, with a permissible

variance of ± 10%".

They're allow 10% either side so Erfa must be +/-5%.

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