Thyroid Federation International. Are you awareOf World Thyroid Awareness day last May?......

[SAMBS]

..............Also that UK and some other, European countries, incl France are not Members?

I have copied and pasted the below article for information only, which I have taken from their website thyroid-fed.org

And I also suggest its Endocrinologists we need to be talking to, not just our Doctors!

...............

The article is titled Alternative Substitution 2014.

Alternative substitution (TFI statement 2014)

Thyroid Federation International – Statement

Thyroid hormone substitution: T4/T3 combination treatment and animal thyroid extracts

The standard treatment for hypothyroidism is levothyroxine (T4). In the majority of

people with hypothyroidism levothyroxine reverses their symptoms. Levothyroxine has

a long track record of safety and treatment can be monitored reliably by blood

tests. Because of the long duration of action, levothyroxine can be taken once daily.

Levothyroxine is a “pro-hormone” and is converted in the body to T3, the really

active thyroid hormone, which tissues and cells respond to.

Thyroid Federation International is concerned that many people with thyroid disease

feel that their symptoms are not well controlled. The information available in the

media on this topic may be confusing for patients. It includes suggestions of using

large doses of levothyroxine, T3, combinations of levothyroxine and T3 or desiccated

pig thyroid.

Thyroid Federation International believes that patients should be empowered by

being well informed about their condition and the various treatment options and

should take an active part in decision making about their treatment. Patients must

also be well informed about potential adverse effects of treatment options.

People who remain symptomatic on thyroid hormone replacement are an important

and medically challenging group who deserve to be taken seriously and managed

holistically. Within this group there are individuals with other medical diagnoses or

who have never achieved optimal thyroid hormone replacement with levothyroxine;

alternative means of thyroid hormone replacement may provide temporary

subjective improvement in symptoms, at the expense of long-term harm to their

health and may delay the diagnoses of other conditions. Many symptomatic

patients who have tried different thyroid hormone replacements fail to improve,

which is indicative of the fact that this approach is not a panacea for people who

are in that unfortunate category. For some people a trial of combination of T4 and T3

may prove to be beneficial. Thyroid Federation International endorses the European

Thyroid Association guidelines on this topic ( karger.com/Article/Pdf/339444 )

which provides a sound, responsible, safe and holistic framework (see Appendix 1).

Some people choose to take high doses of thyroid hormones or desiccated pig

thyroid. This choice should be respected – in such cases we believe that they should

have access to medical supervision and monitoring for potential development of

adverse effects.

We believe that engagement between patients, scientists, doctors, patient and

medical professional organizations with an open mind is the best way of improving

patient outcomes and their quality of life. Our knowledge and understanding of

thyroid hormone replacement in people with hypothyroidism needs to be

broadened. Thyroid Federation International believes that more research is required

using robust scientific methodology.

May 25th, 2014

Ashok Bhaseen

President of Thyroid Federation International

[shaws Administrator]

Thanks for the link but as soon as I opened it my heart sank like a stone when I read the name of a contributor. So didn't read anything else as I know the attitude which exists.

[SAMBS in reply to shaws]

Why did your heart sinks Shaws? Do you mean because of a contributor to the article, or me as the contributor to Thyroid UK!

If me. I'm just trying to get to bottom of of having had my health affected bydifferent additional conditions in a few short years, when I was apparently clinically hale and hearty before! Also for 8 yrs inUK, never told or given results of my first blood test there after having symptoms, unknown to me at time, of Hypothyroidism, which is what I what I was told I had then.

Anyway I hope you agree every avenue is worth following, when many other things people write of also come down to additional things going on with them. Yes we always needs to 'sort the wheat from the chaff.' One thing everyone seems to agree on is that majority of GP's, mine included, will only follow the TSH testing route. it's the Liver and Haemotology consultants only in my case who periodically ask for other tests, so not all my blood tests follow a regular pattern and I found the Thyroid Consultant the worst of all in her attitude. Especially having just brought my whole health history into the picture.

[LouiseRoberts in reply to SAMBS]

I think Shaws is referring to the fact that the link goes to ETA Guidelines and one of the contributors is a well-known, generally less than open-minded Endo...

L

x

[shaws Administrator in reply to LouiseRoberts]

Yes, Louise, you're spot on.

[LouiseRoberts]

It is on the list for Thyroid UK to approach them about membership.

Do you happen to know the cost of full membership?

L

x

[SAMBS in reply to LouiseRoberts]

Louise, if question was for me, I only found the website this morning, I'll see what I can find out and come back to you.

[LouiseRoberts in reply to SAMBS]

Yeah it was - oh, sorry, I assumed you were involved with them in some way - my bad.

[shaws Administrator in reply to SAMBS]

SAMBS sorry if I upset you. It was nothing to do with you and it is as Louise has guessed. I will drop you a private message.

[SAMBS in reply to shaws]

No not upset, just explaining!

[SAMBS in reply to LouiseRoberts]

Have sent an email for info, Louise, the address is a Canadian one, so may be tomorrow or later if I get a reply!

[LouiseRoberts in reply to SAMBS]

aww - thanks!

x

[kaliayev]

Personally I think that the guidelines from the European Thyroid Association mentioned in that statement are pretty good, taking into account the attitude of the regular endo. A nice first step, I would say.

If you are worried about the authorship of a certain British doctor, I guess that he was overriden -up to a certain point- by the rest of the authors. They are more progressive in the T3 issue:

- Wiersinga has written reviews supporting the use of T3 in certain cases. (ncbi.nlm.nih.gov/pubmed/198..., ncbi.nlm.nih.gov/pubmed/244....

- Nygaard is the author of the biggest study that showed superiority of the combination treatment. (ncbi.nlm.nih.gov/pubmed/196....

- Fadeyev has studied combination therapy and it seems to have a certain perception of the shortcoming of the T4 only approach: "L-T4 replacement therapy is associated with non-physiologically high FT4 and low FT3 levels." (ncbi.nlm.nih.gov/pubmed/166..., ncbi.nlm.nih.gov/pubmed/206... )

- Duntas has shown, at least, a more rational approach to the question: " The introduction of a [T3] slow-release compound of this nature promises to enrich the arsenal of thyroid hormone preparations, thus enhancing management of situations like euthyroid sick syndrome, certain cases of depression and subclinical hypothyroidism". ( hormones.gr/pdf/Reassessmen... )

For me, those 4 are some of the few big "good guys" in the thyroid issues, with a couple of doctors more.

[SAMBS in reply to kaliayev]

Thanks for putting that Kaliyayev.

[SAMBS in reply to kaliayev]

Yes I have used the pubmed sites before, and 3rd link said error, page not found.

[kaliayev in reply to SAMBS]

I just corrected it.

[SAMBS in reply to kaliayev]

My apologies was 4th not 3rd link.

[kaliayev in reply to SAMBS]

Corrected too. This site has the annoying issue of not separating the final parenthesis from the URL. Anyway, it's fine now.

[SAMBS in reply to kaliayev]

Just read the hormone article now Kaliayev, I wonder how far the research has come, article is dated for 2005. I know my thyroid is not as should be sizewise and I had. TB gland removed. I also know the thyroid needs the pituItary to be working properly. So all I can do is take my findings, copied and pasted to notes on my iPad when I go To my next hospital appt.

as Hippocrates said

"Do not draw conclusions which arise from logic alone, but also from practical demonstration"

and that's what I hope to demonstrate!

[SAMBS]

I also have just looked at the link in my post, I was concentrating more on the words in what I copied and pasted and can't disagree with last paragraph sentiments, but having now looked at the Karger link. Have taken from it the below in relation to me

"Suggested explanations for per- sisting symptoms include: awareness of a chronic disease, presence of associated autoimmune diseases,"

I am immune to TB, didn't have to be inoculated at 14, because of gland op.

Last year Haemotology Consult actually wrote on the paper he gave me "portal hypertension, chronic" as of last year also, it's non-speficic cirrhosis, with cancer and alcohol positively ruled out by blood tests as being cause. Yet still have some, not all, of the Hypothyroid (Hashimotos?) symptoms.