Update and moan... Grrr T3 & Endo

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

8 Replies

  • They just don't get it that it's not our fault it's so expensive and they should do something about the extortion rather than deny us the treatment. I have written to my MP and the Competition and Markets Authority. At least there is a growing awareness of the NHS ripoff whether anything gets done is another matter. Just off to the chemist to see if my scrip is in!

  • Sending you a massive hug Jo!

    I had more or less the same treatment in July. So much so, I have made an official complaint. No one is interested. All my results came back and proved that I am in the middle range for T3 and that is all because I take my one 20 mcg of lithyronine a day. My T4 is a little high but I was on a high dose, (250 mcg) now on 225 mcg but I bet that will come down again when retested. I have no faith in the NHS. My Endo said that "we are in a minority and there was no scientific evidence to suggest that the T3 medication works" - A lot of things were said that day and one of my replies did unfortunately end in "off" - Not one of my better moments, but I do not regret it. I will continue to use it and buy from abroad if I have to. Stuff the lot of them. You take care and keep posting :)

  • Im dreading my appointment with an Endo next month as i was trying to get an increase from my GP of the T3. Im having bloods taken tomorrow ahead of the appointment but i dont hold much hope. Have most Endo's been brainwashed into this dillusional idea that we dont need T3 but in reality its all about money? I wonder if we would all be better off on marijuana? Maybe that is easier and cheaper to come by on the NHS and wouldnt create such a stigma? I am of course joking but....

    It makes me want to stop paying so much tax and national insurance and opt out of the NHS if they are not supporting or treating the thyroid in a way which is beneficial to the patient particularly as lots of people on here are self medicating and paying for their own bloodwork. Dont get me wrong, the NHS is not all bad but it isnt helping us now is it! Im having enough trouble trying to get my GP to run blood tests i feel would be useful for my forthcoming appointment but all they will offer is the standard thyroid stuff.

    Anyway, i digress...back to your query....i get my prescription T3 from my GP and it is dispensed via Days Lewis which is the local pharmacy but they do have to order it in for me but it is usually available next day for collection. I think soon though i will be self medicating!!

  • I completely agree with you Ic1973,

    A lot of chemists have difficulty getting it now and or refusing, due to the cost. One chemist, took 3 weeks to get it. So went to Boots and they struggle too. It is disgusting when you pay your taxes and insurances and you get little help from the NHS about this. Just plain common sense, to have more than one drug company supplying. But obviously that doesn't come into it.

    I had one Dr say to me "That I was lucky to be on it" - Not bloody lucky, necessity you silly man! Anyway I am digressing myself.

    Hope you have better luck with your Endo, then we are all having, you never know, there might be one or two Endo's out there who have common sense as well as knowledge.

    Let us know how you get on. Take care :)

  • Thanks Jolly Dolly. I think if i go there thinking that it will be a complete waste of time based upon past experience albiet in a different county then i wont be disappointed but i will have to try and keep my cool and be cool calm and collective for fear of disgracing myself!!

  • What I found annoying is in my letter from endo he's put that he suggests t4/t3 combo however it is likely going to be a placebo affect that they cannot prove! Nice!

  • That is get out clause , I bet! As he knows the GP will not put it on prescription. Charming isn't? I did smile at the "placebo affect" comment.

    Take care :)

  • When will these so-called "experts" educate themselves and read the available research????????

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