Guidelinees from BTA

[yorkshiregirl44]

Hi,

The BTA states that in patients who do not get well after T4 replacement and also have in range blood results while taking T4 autoimmunity should be looked at as a cause of symptoms. Im interested to find out who and where autoimmunity is treated. Apart from nutritionists iv not come across any othe body that treats this.

Ant ideas please

Christine

[shaws Administrator]

Christine thanks for the information. I think that must be new Guidelines which seem to have been updated thankfully to include that sentence.

It does look as if the BTA has had a big dose of liothyronine to suggest something so obvious but at least it is a giant step forward for patients.

[yorkshiregirl44 in reply to shaws]

Good news maybe..but cant find out how they suggest looking at autoimmunity.

[Clutter]

Yorks, as far as I'm aware there is no cure for autoimmune disease, simply management of symptoms and replacement of the low hormone. Most doctors won't even acknowledge that having autoimmune thyroid disease causes symptoms when thyroid levels are euthyroid ie they're denying the autoimmune disease causes symptoms and that the symptoms can only be due to low thyroid levels.

I think the BTA Statement is implying that having a chronic disease or autoimmune disease affects patients psychological wellbeing and may be why they do not respond to Levothyroxine therapy. Towards the end of the statement Box 1 lists a number of possible causes of persistent symptoms of patients on Levothyroxine. These causes do not include the possibility that sub groups of patients do not respond to Levothyroxine.

[Girlscout2 in reply to Clutter]

God it's so frustrating isn't it?! I have a wonderfully supportive endo now who supports me on NDT even though I had cancer, 'clever girl' she said, when I told her I was self medicating. And when discussing both why levo didn't work, and also why out of the blue I suddenly feel rough, she said:

What my colleagues forget is your autoimmunity. In ways we are not yet clear on, it does something to the cell receptors, particularly if you were unwell for a long time before treatment. NDT is the only thing I've seen work in patients like you (this woman is the lead clinician in a Nuc Med endocrinology department in a major uni teaching hospital!)

And she also said, re the rough patches, 'that will be your antibodies, flaring up, to some trigger that may or may not be obvious'

It seems to me they are losing knowledge not gaining it ... she's about to retire and all her knowledge and compassion along with her.

As for autoimmunity - I have a few thoughts on where it comes from and how to treat it, mainly excitatory neurotransmitters, inflammatory cytokines, and oxidative stress which over revs the immune system. Ditto endocrine disruptors in the environment (for eg I live in and grew up in an arable farming area, so have been breathing in crop sprays all my life, like roundup and fertilisers). Leaky gut and all that jazz we already know about. Treatment for me in terms of calming autoimmunity (all tests of late all antibodies are zero) have been chiropractic adjustments, deep tissue remedial massage, clean eating, yoga, meditation, stress reduction, removing toxic metals from teeth, CFS protocol for neurotoxins, the list goes on.

I'm with Dr P, who once, whilst holding my hand, said of doctors, 'stay out of their clutches as much as possible darling' ... I agree with him, most docs are in the 'sickness business' (and it is a business!) and not the wellness business!

[Clutter in reply to Girlscout2]

Girlscout, My mother and sister had Graves which is what I suspected I had until blood tests showed Hashimoto's and unequivocally euthyroid levels. I was told by my otherwise excellent thyroid surgeon that symptoms were non-thyroidal because Hashi's was asymptomatic when thyroid levels were euthyroid. I've had no Hashi symptoms post thyroidectomy and there is no Tg and TgAB so I've always been convinced he was wrong.

I was recovering nicely on T3 for 3 months but did very badly when I was switched to Levothyroxine. It suppressed my TSH but made me so ill I became 90% bedbound. Endo was useless so I self medicated T4+T3 and once I'd fixed myself he decided to prescribe T4+T3. I only need annual check ups now so that reduces endo opportunities to meddle with doses

[Girlscout2 in reply to Clutter]

It's just staggering how silly and stubborn they are, well most of them! I thought the point of science was to constantly question your hypothesis? It seems more like the poor patient is bashed over the head with the hypothesis (hashis patients have no symptoms when 'euthyroid' for e.g.) which seems to me is akin to having a map, looking out the window and seeing a hill that isn't on the map, and saying, 'fetch me a JCB, we need to move that hill!'.

I try and avoid them as much as possible ....

x

[Clutter in reply to Girlscout2]

Girlscout, I'll see the GP if there's infection or OTC pain relief doesn't help but otherwise let illness take it's course and self resolve. Since thyroid is well managed I've not seen a GP since Dec 2014.

[Girlscout2 in reply to Clutter]

I've not seen mine for two years as he keeps trying to tell me I've got 'bi polar 2' - the man is an arse ... lol xx

[Clutter in reply to Girlscout2]

Girlscout, I was diagnosed bipolar in my teens before they designated I or II. Haven't told GP I stopped taking ADs in Oct 2014. They have NEVER suggested any symptoms were in my head unless non-thyroidal falls into that bracket. Mind you most things that needed medical investigation over the years have been injuries, smears, benign lumps and cysts, and infections confirmed with blood or urine analysis.

[Girlscout2 in reply to Clutter]

Mine just said, 'your thyroid is fine, it must be something else' and as I'd had ten years of misdiagnosed graves (cant sleep, racing head, mood swings, anxiety and panic etc etc etc) then the dreaded 'mental health' got on my notes - despite looking and feeling like utter crap once thyroid was removed ... I wish I could upload before and after pics here, transformation from well to sick, to 'cured' to doing it my way is quite astonishing!!

Went to war with medical sec as I requested my notes and the opening gambit on my SCR was 'patient wants review of notes due to psychiatric history' - that's when I stopped seeing them, got notes sorted, saw a private shrink who was up on thyroid, and wiped the floor with the b@stards!

He's about as much help as a chocolate teapot and should stick to measles, boils on bums and ingrowing toenails!! LOL x

[Clutter in reply to Girlscout2]

Girlscout, Mine's a large teaching practice and you can see whoever you want although you may have to wait days to see a specific doctor. I've only seen one GP who I wouldn't choose to see again as I disliked her although I didn't have a problem with her professional competence.