NHS (UK) CCG have taken away my T3 treatment

[CFS_for_19_years]

This is information that may help your case:
https://www.nahypothyroidism.org/thyroid-hormone-transport/#conditions

Conditions associated with abnormal thyroid transport
It is important to note that because this transport of thyroid hormones into the cell is energy dependent, any condition associated with reduced production of the cellular energy (mitochondrial dysfunction) will also be associated with reduced transport of thyroid into the cell, resulting in cellular hypothyroidism despite having standard blood tests in the “normal” range. Conditions associated with reduced mitochondrial function and impaired thyroid transport include: insulin resistance, diabetes and obesity (68,69,70,71,106); chronic and acute dieting (4,51,66,72,112,113,114,115,116,117,118); diabetes (69,73,74,75,76); depression (73,77,78,79); anxiety (73,80); bipolar depression (73,77,81,82); neurodegenerative diseases (73,83,84,85,86,87); aging (73,74,88-100); chronic fatigue syndrome (73,101,102); fibromyalgia (73,103,104); migraines (73); chronic infections (73); physiologic stress and anxiety (73,79); cardiovascular disease (73,99,104,105,108); inflammation and chronic illness (73,109,110,111); and those with high cholesterol and triglyceride levels (58,60,72,106,107). Thus, standard blood tests can be very unreliable if any of these commonly occurring conditions are present (1-107)

Also, under the Treatment heading:
https://www.nahypothyroidism.org/thyroid-hormone-transport/#treatment

As stated by Hennemann G et al in Endocrine Reviews: “Even a small decrease in cellular ATP concentration results in a major reduction in the transport of T4 (and rT3) but only slightly affects T3 uptake (5).” This makes it inappropriate to use T4-only preparations if treating any condition associated with the following: reduced mitochondrial function or ATP production, which includes insulin resistance, diabetes and obesity 68,69,70,71,106); chronic and acute dieting (4,51,66,72,112,113,114,115,116,117,118); diabetes (69,73,74,75,76); depression (73,77,78,79); anxiety (73,80); bipolar depression (73,77,81,82); neurodegenerative diseases (73,83,84,85,86,87); aging (73,74,88-100); chronic fatigue syndrome (73,101,102); fibromyalgia (73,103,104); migraines (73); chronic infections (73); physiologic stress and anxiety (73,79); cardiovascular disease (73,99,104,105,108) and inflammation and chronic illness (73,109,110,111)

 

[mermaid]

@mermaid I'm expecting to be in the same situation as you at some point soon. I've been taking Armour for years but the price went up last year (quite dramatically) after Forest was sold to a big company and I think it is only a matter of time before I get told it is too expensive.

I too live in fear of having my supply cut off as I took levothyroxine and felt so dreadful on it so much so that I took myself off it. I worry about not being able to buy Armour privately. With another drug I take (DHEA), I used to buy the brand that works for me from the US but then the government (around the time of the 2012 Olympics) cracked down on any imports of anabolic drugs and so the US suppliers (who are reputable) will no longer ship the drug. I've had to find some back route to get the specific brand but I think it is only a matter of time they close any loopholes.

I wonder if you have done the D102 gene test or 23andMe? I found that I have the polymorphism of the D102 gene that means you do poorly on T4 but have an improved response to T4+T3. I plan to use this as evidence if they try and cut my Armour prescription. Though I have found that in the ca@se of thyroid disease, UK doctors are very blinkered and aren't really very interested in any evidence unless it is evidence that supports T4.

@JamBob You must be one of a very few able to get NDT (Armour) via the NHS, as I know most endos/GPs won't countenance it at all. Did you have a fight to get it in the first place?

Yes, I can understand your concern, as I knew that Armour had gone up in price. Would they though maybe agree to a different make of NDT - I know Canada also do one, but cannot remember the name? (after all if they agree to the principle of NDT then that is half the battle).

I have not done either the DI02 test or 23andme, but have considered doing both of them in the past. I guess my feeling now is that as you say, they are so blinkered that it would not make any difference to their decisions. My own GP though very helpful in some directions seems remarkably lacking at times in curiousity about science and how things work. She has told me more than once that I know more about the thyroid than she does which I find scary. I have only seen an endo once, and I will probably be rereferred now, but most of them just specialise in diabetes! I will need to make a 6 hour round trip to see someone who will at least be competent in knowing about T3 it seems.

 

[mermaid]

This is information that may help your case:
http://nahypothyroidism.org/thyroid-hormone-transport/#treatment



Also, under the Treatment heading:

@CFS_for_19_years thank you very much for that information. Very interesting indeed!

I did try the link and it's broken, so just in case anyone else sees this page and wants to look it up, I have found the site and the source here so hoping this one will work https://www.nahypothyroidism.org/thyroid-hormone-transport/#conditions

When I saw the new ME/CFS research (Naviaux) I thought of this problem then with regard to low metabolism but didn't realise that someone else had already concluded this!

 

[CFS_for_19_years]

@CFS_for_19_years thank you very much for that information. Very interesting indeed!

I did try the link and it's broken, so just in case anyone else sees this page and wants to look it up, I have found the site and the source here so hoping this one will work https://www.nahypothyroidism.org/thyroid-hormone-transport/#conditions

When I saw the new ME/CFS research (Naviaux) I thought of this problem then with regard to low metabolism but didn't realise that someone else had already concluded this!

Sorry about the bad link. It's been fixed now.

There's a ton of great information on that site, but it's a bit intense if you're not up to reading sciencey stuff on a bad day.

 

[mermaid]

Sorry about the bad link. It's been fixed now.

There's a ton of great information on that site, but it's a bit intense if you're not up to reading sciencey stuff on a bad day.

Sorry about the bad link. It's been fixed now.

There's a ton of great information on that site, but it's a bit intense if you're not up to reading sciencey stuff on a bad day.

Thanks CFS_for_19years (sorry tried to tag and not working). I think the site is brilliant. I copied out the article last night so I could sit and read it properly, and was astounded at all the refs. Also the way it's written is very user friendly for a lay person.