Report of today's T3 alert interview with my GP.

[Hiphypo]

The T3 shortge exploded - and I am very worried indeed. As I am now on T3 only, and feeling increasingly well (s the T4 leaves my body and the T3 dose increases), I was quietly hopefull that this was the start of a recovery process. Not any more.

Following good advice on here, I printed off the info and yesterday set off to see my (very helpful) Pharmacist. It was news to him, but he had 2 tubs left on the shelf and promised to put them aside for me until I got a presription. So far so good.

Off to the GP, get an appointment for this morning and so go, armed with info.

She commented at once on how well I was looking, and what a lot of weight I'd lost since she saw me in September. I reply that this has only started to happen since coming off T4 and being on increasing doses of T3, thanks to Dr S. "Ah yes.." I could see his letter lying on the top of the file. Is this why I had come to see her? Only indirectly.

She also knows nothing about the supply failure for T3, but happily writes 2 prescriptions. I asked about organising a 3 month stock to avoid this panic in the future - no dice. I tentatively ask about NDT being a possible stop-gap if supplid on a Named Patient Basis, and she laughed and said, that went out 30 years ago. the only people who are put on that are those taking part in experimental clinical trials. So that will be a NO, then.

She checks on T3 and sees the price: "no wonder he likes to get this for you!" Going to discuss supply is a calculated gamble - I am left hoping she doesn't decide that the practice budget won't stand this. In a week's time I will be costing them £212 per month, every month.

Off to the pharmacy, he is in a bit of a tizzy - as promised, there are 2 tubs for me. But he has found out that there are only 2 left at another branch, and they are coming. After that - none in Edinburgh.

By sheer co-incidence, my daughter is off to Crete tomorrow. After I got home from seeing the GP, I logged on here and just happened to see a post by someone in... Crete, where it can be had from their pharmacies. So guess who is going to get a shopping list? Crossing my fingers that she is not out in the sticks without a car...!

Best of luck to all of you also caught up in this ridiculous and totally preventable situation.

xxJenni

[Totoro]

Glad you're doing so well on T3 only and that your daughter is off to Crete at just the right time. The brand she'll get over there is Unipharma (made in Greece) which I've used before.

I've recently gone onto T3 only and I was told by the endo I saw (one I hadn't seen before) that I would be the only person on T3 only in the NHS in Edinburgh. It's great to hear there is someone else too!

May I ask how much you take each day?

Totoro

[Hiphypo in reply to Totoro]

I am taking 60 mcg, but in a week it will go up to 80mcg. I did start off on T4, then 10mcg of T3 was added after a fight, and then increased to 20mcg. I stayed on that until I went to see Dr S in Glasgow, and after trying to increase both for a couple of months, gave up the T4 completely as I was feeling worse. That was 3 weeks ago, and I am already feeling so much better.

What are you on? I have no idea what the Endos at RIE will say. Plus GP wants to test blood in 5 weeks.

Are you ever in Edinburgh? did you know there is a local Thyroid support group that meets once a month - last Tuesday, 7.15pm - in Liberton High School Library? Perhaps you would like to meet up in town sometime?

Jenni

[mstp in reply to Hiphypo]

Hi I think I'm in a bit of a muddle with my T3 dosage. It seems to go ok and then things go wrong again and I'm not sure what I'm supposed to be taking. I keep taking my pulse / temperature, etc but I'm at the stage where I'm not sure about anything so I was interested when you said you were taking 60 and would increase it to 80 in about a week. I had a go at reading Paul Robinson's book but find it is quite lengthy and in the end I can only dip in and out of it which is difficult because there is no index. I think he says to increase dosage very slowly though and this doesn't seem to help me because I think I've probably been taking things too slow. Please could you tell me how you manage your increases. Ever since I've been on it I've felt a bit breathless and I'm not sure what I'm doing now because nothing seems to feel right.

[Heloise in reply to mstp]

Perhaps some of the links on this page would help you. Do you have reverse T3? thyroid-rt3.com/backgrou.htm

[Totoro in reply to Hiphypo]

Hi Jenni,

I'm on 85mcg T3 only at the moment, might go up a bit yet. I have to get the ok from an endo, my next appointment is June.

Going to the meeting would be cool or meeting up if you fancy a coffee

Totoro x

[fluffyhat in reply to Hiphypo]

Hi jenni,

I live in edinburgh and didnt realise there was a support group - is it always the last tues of the month? and how long does it last roughly?

amanda

[Hiphypo in reply to fluffyhat]

sorry Amanda, missed your post. Yes there is meeting always (except during school hols)on the last tuesday of the month so the next one is on 28 May, at 7.15 - 9pm, in Liberton High School Library. will pm you too - hope to see you there

Jenni

[fluffyhat in reply to Hiphypo]

no problem, thank you for letting me know - I wont be able to come tonight as working a 2-8pm shift but maybe I can make the next one

[Totoro]

Some more info on UniPharma T3 for you and your daughter:

It's just called T3. If you google that you'll find plenty of images of the boxes so she'll know just what it looks like. You don't need a prescription to get T3 or T4 in Greece and a pack of 30 x 25mcg tablets costs 2-3 euro. (Yes the cost of T3 in the UK is a complete rip off)

I liked the tablets, they're slightly smaller than our 20mcg tablets so a bit less filler and they taste slightly sweet so pleasant to take.

My fiance got them for me once. He just asked for thyroid pills and the pharmacist showed him packets of T3 and T4 and he just picked the T3. No problem

Best of Luck,

Totoro

[Hiphypo in reply to Totoro]

Thank you so much, really really appreciate your helpful information. I did as you suggested and have got the images.

But I also - curiosity gets the better of me every time - found this:

mranabolics.com/t3

Horrifying.

[Marz in reply to Hiphypo]

....again someone is making a pleasant profit ! Yikes ! T3 was used as an anti-depressant back in time but that was stopped when people had palpitations or some such thing. Also used as a slimming drug which brought into disrepute as it was abused and again the side effects were noted.....

[bossbird in reply to Hiphypo]

can you actually order this stuff as if there is a shortage then theres a way

[Marz]

...should your GP comment on the price of T3 in her practice again - it may be worth pointing out to her that it is under 2 euro in Greece. So could it be the NHS are at fault for being overcharged. I expect someone somewhere is being rewarded for the deals. Once knew a Medical Buyer in Birmingham who had stories to make your hair curl - the wastage was huge in all departments. Items bought for the sake of and expensive diagnostic equipment that sat in storage because there were not enough trained staff to use it - ummm ! Won't bore you with the rest. Lets focus on getting the price of T3 correct ! Who is the person responsible for placing the orders with Mercury Pharma ? We really need to start a dialogue with him/her. Am sure someone on here can find out......

[Hiphypo in reply to Marz]

You sound like an ideal campaigner! I wonder what other medicines are in this near-fraud position?

[Zephyrbear]

Thank goodness I have a brother in Greece who is willing to help me.

[Barbaraj]

Cynomel from French Pharmaceutical co sanofi-aventis is much cheaper than Uk version so you could ask your pharmacist to source this as mine has for me. If you do, tell your gp on your next visit!

[Hiphypo in reply to Barbaraj]

I understand that there is none in France either - or Finland.

[vajra]

Ti-Tre by Teofarma (an Italian company, I've seen it referred to to as a licensed version of the US made Cytomel but don't know if that's true) is another brand of synthetic T3 commonly sold in southern Europe, and which we now get here.

I've been taking it on and off (there were some major supply hiccups with the Goldshield product in 2011 and 2012) for a couple of years and have had no problem with it at all. Very consistent and agrees with me so far as I can tell - and I did seem to have some issues of that sort with the previous Goldshield product. The pill is a little softer and more crumbly if you need to cut it with a blade to adjust your dosage though.)

The price marked on the Italian pack of 50x 20mcg is €3.46 - and an Italian friend has checked and he can buy it Milan for around that. Our 'health service' managed to screw the price up x 10 to over €30 here in Ireland.

I wouldn't lose any sleep over costing the system too much, as it looks very like the high UK price too is almost entirely a fignment of somebody's imagination - somehow generated between the health system and local distribution. I've always wondered who got to pocket what is an insane mark up.

I don't know what's going on, but for whatever reason I've never been able to get solid information regarding the reasons for the hiccups in hormone supply here last year - although it seemed primarily to be confined to the Goldshield product.

That Mercury may now be affected is a matter for concer.

Wonder what's going on?

ian

[bossbird in reply to vajra]

i had a private perscription for t3 a few months ago to tied me over until a GP visit went to the pharmacy and they wanted to charge me £70 for 20mcg x 80 no wonder the health service is shockingly bad but shockingly good at wasting our money x

[Issy]

So I need to go on Holiday to Crete, with a fairly fat wallet?

Do they do Armour too?

[penny]

I've just put in an early request for T3 to my GP but may have to chase as they don't cover themselves with glory and only order when I put in the prescription request. In other words they don't keep any stock.

I am slightly in a panic as I take 120mcg per day and like most of us on T3 go downhill fast if not taking enough.

I'm a little wary of ordering over the internet as one hears such stories of 'fake' drugs being supplied. Any suggestions would be appreciated for sourcing some if GP cannot do so.

[bellk]

Ian, thank you so much. I am waiting for GP to ring me back but if no joy there, I have friends in Italy, hope theycan buy without a prescription.If there is no limit on quantity, I will ask the dispenser at mysurgery if she wants some sent for her as well because she was tearing her hair out at scarcity- of course she will have to say no.