Update & moan Endo T3 & B12 moan :) - Pernicious Anaemi...

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Update & moan Endo T3 & B12 moan :)

scorpiojo profile image
10 Replies

Hi, I have waited to calm down to give this update.. I think I am there lol... I went to see the endo on the 2nd Aug and I got a guy (Never seen the consultant) But he was ok, but started to ask how I had felt on my T3 since March I said out of 10 I felt a 4 to 5 and that was better than the 0 in March, so was he thinking of increasing the T3 from 20 mcg... The look was priceless... He started to say that actually they were trying to take patients off of it as the NHS wasn’t prepared to pay blah blah.. So I took out my Blue Horizon test sheet and told him I had Folate, Ferritin and vit D and b12 Deficiency and I had stated on hrt that was coming good for me re sweats... I then said, they wouldn’t be taking me off T3 as it seemed to be helping me and the cost here needed sorting out seeing as it is really cheap non prescription in other countries.. I wasn’t rude but I was firm... Anyways, he then started to say that as I was being treated re b12 and vit d etc via the sheet’s results I probably didn’t need the T3... So I then said Funny, as I stated the T3 in March and all the others I started in late June so I had started to feel better before the b12 jabs etc.. His face went blank he went into the room next door to tell the consultant everything (What’s that all about you may as well see the consultant) ... He came back and said see you in 4 months and carry on with the 20mcg... So I said do you realise folk are buying this from abroad over this denial of the drug and they are at risk of over medicating etc etc because you are stripping them of feeling better... How does that make you feel... His answer the drug is too costly and you seem to get more energy from it in the afternoon when you have taken it at 7.30 and it can’t be in your blood stream that long, so something else is giving you the improvement.. GRR... Also, I have had trouble actually getting the T3 from chemists is there an issue?? Have had the chemist say oh that dear stuff ... Tesco’s gave me back my script!!! Any thoughts or hugs appreciated xx Jo

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Foggyme profile image
FoggymeAdministrator

Scorpiojo this is just dreadful. And it's something I also read about on this forum recently.

Don't know much about thyroid so all I can say is I'm really sorry. I know how distressing it is when medic's treat patients like this. It's just a nonsense.

I'm just about dropping and off to bed so I'm sending you big hugs so that you've at least had a few words of support before the long night begins 😀.

More hugs xx

scorpiojo profile image
scorpiojo in reply toFoggyme

Thanks xx.. I know the thyroid bits not for here, but I'm not 10 out of 10 even on b12 etc why didn't he think to heal me rather than distress me re the t3 withdrawal! What about him saying ... Ok, that a cocktail you are on let's unravel it together, to make you feel better!! Grrr.. Xx

Marymary7 profile image
Marymary7 in reply toscorpiojo

That is exactly my opinion...why don't they sort out the whole picture. I dispare of our doctors/system/specialists. It's just not doing the job. I'm like you on a crummy regime of thyroxin and having to buy NDT and try to sort out and the dr saying with that TSH you are ok and there is a feedback loop so you are fine!

And my brother is in a mess with B12 so trying to help him as he is poorly with Multiple sclerosis and thinking how negligent there are with him.

So good luck in the fight and having to learn all this and treat ourselves! Sorry I can't help with advice.

M X

Schenks profile image
Schenks

Jo, i can't give you as full a reply as I would like because all the swearing and ranting will simply be edited anyway. But what the f....????!!!! You have my absolute sympathy and all I can do is offer you (((( x )))) and urge you to keep breathing.

x

ndodge profile image
ndodge

It's maddening, it is!! I don't have much faith in doctors here in the US and I guess it's the same in the UK. I've actually had much better treatment with a naturopathic doctor.

So sorry Scorpiojo, that you had such a frustrating experience. It makes no sense that doctors do not listen to patients! The arrogance is astounding!

I hope you get the thyroid meds you need! :-)

Marz profile image
Marz

Next time the Consultant talks nonesense about your energy levels in the afternoon - do remind him that although the T3 does not remain in the bloodstream for too long - the positive effects of T3 within the body do - as it is needed in every cell in the body - morning - noon and night :-)

scorpiojo profile image
scorpiojo

Hi Marz... Is there any paperwork re that? Please... I know at this moment in time folk can buy b12 and t3 elsewhere and I am ok with that... But if that stopped tomorrow what then? Lucky to have the cash and lucky re supplies... And, while we are all doing this nothing else is being resolved...Plus, we shouldn't be taking the t3 really without help.. So bloody wrong... And yet, we can hand out cash and offer others into a coutry that isn't treating us here right grrrr.. xx

scorpiojo profile image
scorpiojo

Thanks all I will update IF I get any t3 from any chemist!!

Marz profile image
Marz in reply toscorpiojo

Only just picked up your reply 😊 Don't forget to click reply button beneath the post of intended recipient.

Why not ask the question about T3 on the Thyroid Forum - How long does T3 stay in the system ?

Meanwhile I am off to have a search ....

scorpiojo profile image
scorpiojo in reply toMarz

Thanks x

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