Vitamins and minerals : Just a heads up, in case... - Thyroid UK

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Vitamins and minerals

UrsaP profile image
6 Replies

Just a heads up, in case anyone else comes across any comments - had a chat with my gp last Fri, about the situation regarding T3 in my area. I am still getting it on the NHS but get anxious every month - 'is this the month they will say no?' This anxiety not good when the adrenals are not great. So decided to ask.

It has not been 'banned' in the area at the minute...'when' it is... So interesting that used the word 'banned' and not if but when! Appeal and private will be the next steps. Interesting he did not mention referral?

But - the main point of this post is that I was also asking about having Vitamin D and Iron checked. Bit D was very low a few months ago, was put on high does and told to source a good maintenance dose afterwards. So just wanting to see if the Vet D I'm taking is enough. No record on my file of any of this? [think it was a hospital test result but the Vet D was issued by GP surgery] And I have 'signs' of low iron, having had this many times before. GP checked records, had iron checked in 2017 and was fine then? 18 months on assumes still fine??? However, he did say that there is discussion that questions the point of testing vitamins and minerals. So possibly the next chapter....

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SlowDragon profile image
SlowDragonAdministrator

So it sounds like you're going to need to test privately, like thousands of others

Good vitamin levels are very important

Guidelines clearly state if NHS endocrinologist originally diagnosed you as having clinical need for T3, and doing well.....you should still be prescribed T3

New NHS England Liothyronine guidelines November 2018

sps.nhs.uk/wp-content/uploa...

Dossier presented to Lord O'Shaughnessy November 26th

drive.google.com/file/d/1c2...

UrsaP profile image
UrsaP in reply to SlowDragon

Hi SlowDragon . Thank you for your reply. Gp reluctantly agreed to test the Vitamin D and iron levels this time. But think it may be an issue going forward, as we know vitamins and minerals impact a lot. I just can't believe that they are thinking that it is unnecessary.

Im still getting my T3, though getting Thybon Henning brand is going to be a battle it seems. That said the Gp did change the script to read TH, rather than just Lio, I think. Will see if that makes a difference. The chemist I use, has got me a month in advance of TH before it all ran out. So have a month's grace to try sort it. [Special Medicine team not sourcing TH brand anymore apparently. Trying to put us onto Teva] Mentioned to GP that should not just be changing brands.

Did hear that TH being licensed this month, but hearing conflicting info about it.

I'm aware of the current guidance and the Dossier. Also aware that the Dossier is tackling the fact that the CCG's are doing what they like! Wonder how long before this gets frontline publicity.

Would like to see someone tacking the NHS on the need for Presqipp and RMOC and such. To me they look like set up, by NHS, so NHS can do what they like and quote them, without any accountability. Waste of tax payer money?

SlowDragon profile image
SlowDragonAdministrator in reply to UrsaP

Definitely refuse Teva T3

Like Teva Levothyroxine, it upsets many

Be good if UK finally got access to Thybon Henning at German prices

Blow all the other UK brands out the water

UrsaP profile image
UrsaP in reply to SlowDragon

I doubt it will be at the German prices, I suspect it will be same as all others, under excuse of national tariff!

Fergus883782 profile image
Fergus883782

Teva levo made me feel so ill that I stopped taking my meds but my Tsh has gone up to 64. I take vit d high strength supplement but have just had private blood test which showed I am borderline vit d deficient so doc is monitoring this

UrsaP profile image
UrsaP in reply to Fergus883782

Not good Fergus883782 You obviously need to be taking something!? vit D deficiency and issue with me too. In genetics too.

My GP recently said there is some ongoing discussions questioning the benefit and need to test vits etc? Scary!

Oh and why did I want these tests doing....I had them done in 2017!!!

Low vit d was picked up at rheumatology earlier last year, the surgery contacted me and gave me 3 month high dose and said source a maintenance dose thereafter, which I did, I was asking for tests to make sure the dose I was taking was enough, it was as if I'd asked him to do every blood test going! He was so obstructive, apparently there was no record of me needing this vit d. As if that was my fault?

They are so blinkered sometimes. And so anti thyroid patients. We are like the modern day lepers no one will touch us.

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