Hashimotos for at least 34 years

[Bengalgal]

Hi, I'm 54 with hashimotos diagnosed when I was 20. For twenty years I was fine with a GP checking blood levels and taking levothyroxine. But in my 40s I got loads of new symptoms while my levels were still in the normal range. A wonderful endocrinologist in the US prescribed liothyrine as well and everything got better quickly. I need to find a similar savior here in the U.K.

[Greentrees1]

healthunlocked.com/user/Lou... has a list of endos that other forum members have found helpful. Some manage to get T3 from their GP if their endo recommends it and some source it privately.

[Bengalgal in reply to Greentrees1]

I don't see the list?

[humanbean in reply to Bengalgal]

You will have to email Louise Roberts, who works for Thyroid UK on weekdays, and ask for the list of good doctors and endocrinologists. The names have all come from members who were happy with the results of seeing the doctors listed. It would be a good idea to say which part of the country you are in.

The list contains NHS doctors and private doctors, plus doctors who do both kinds of work.

Louise's email address : [e-mail]

[Bengalgal]

I still get it here via the GP but I need someone to adjust it.

[startagaingirl]

Gp's in uk typically know very little about thyroid in general and even less about t3, so you may have to become a bit self-reliant using private testing and advice from this forum. Also I wouldn't be relying on having a continuing supply of t3 from NHS based on recent reports. Should have said, even when requested, NHS labs will only vary rarely actually test ft3 so you could struggle.

Gillian

[Bengalgal]

I get it from the nhs now, as I was on it when I arrived.

[startagaingirl in reply to Bengalgal]

You may very well do so at the minute, but a lot of people have found their supply being withdrawn recently. And that includes a lot of people who initially had it prescribed in the UK and have been on it in the UK for many years. My point was that supply now does not guarantee supply at your next renewal or the one after. I was suggesting that you consider being prepared for what you would do if - or much more likely - when it is withdrawn.

[Bengalgal]

Well presumably I will still have the prescription and can pay for it privately. It's usually cheap. People with no thyroid, after graves for example, usually need a little. The problem is people abuse it to lose weight etc.

[startagaingirl in reply to Bengalgal]

Perhaps you could consider reading a few more posts for research? You may well be able to get a private prescription, but that means seeing a private doctor and paying for the prescription to be issued as well. With such a prescription it is possible to source from Germany, for instance, at a reasonable price, but the price in UK currently could hardly be called cheap. I believe the current price to NHS is £256 for 28 x 20mcg tablets.

There are many people who need t3, not just those with no thyroid, many hypothyroid people do as well (including myself), but many are having it withdrawn currently.

Forewarned is forearmed, at least you currently have time to learn how to take charge of your own condition and have contingencies prepared if you are unable to find what you are looking for - in terms of doctors and meds - in UK.

Good luck

Gillian

[UrsaP in reply to startagaingirl]

Gillian startagaingirl , Those of us still getting T3 need to fight. We need to get Dr's to start producing their evidence that we don't need it and that it has no benefit. Question that and make sure we have the evidence that we need - BTA guidelines for example. And anything else we can produce, plus the fact that WE are the evidence of benefit.

We also need to be asking them if they are going to take responsibility for decreasing health if/when they withdraw, and ask about the dangers of suddenly stopping a medication. What alternatives are they offering as T4, for many, is not an alternative, and we have already proved that. Basically, make them squirm. If we end up ill would that not warrant an investigation into them....negligence maybe? It is so morally wrong.

I suspect many CCG's are already withdrawing T3 so that they can say - at any consultations, that they have no-one on T3 and benefiting, or maybe that they don't even need to hold consultations because they are not issuing it??? Manipulating the situation. And then of course the NHS can withdraw T3 from prescription, and the CMA won't need to follow up an investigation as Concordia will not be producing T3 for the UK market anymore.

And on top of that, the reports of people having medication health up at Heathrow earlier in the year, around the same time other suppliers were having problems importing their product, shipments being returned to USA, and still are, as far as I know, makes me wonder if the next step would be to clamp down on self importing.

Cynical...but...

[Bengalgal in reply to UrsaP]

I was asked to send my t3 success story here:

[e-mail]

If you would like to get involved with the campaign please email - [e-mail]

[UrsaP in reply to Bengalgal]

Thanks Bengalgal I am aware of ITT, but have not sent my story yet but will do it now...

[Bengalgal]

Wow! That is expensive!

[Bengalgal]

It's crazy. In the states it's around 15$, or 10£ for 30 tablets. Doesn't matter if 5mcg or 25. I wonder why the huge difference.

[startagaingirl in reply to Bengalgal]

You have missed the whole UK scenario. It is down to NHS policies for no price control on generic drugs as opposed to patented ones. Competition in the market is meant to take care of it, but when one manufacturer - in this case Concordia- manipulates the market by either buying up all the companies or all the manufacturing streams (i'm not 100% on exact combo they have done), to ensure they become the sole supplier, then there is no competition. What has followed has been outright greed and price gouging. Unfortunately result has been a decision that t3 is not required and the refusal of most health authorities to prescribe. Hence my point about becoming a bit more self-reliant. Be careful with the Indian supply - only go for ones you know by experience or recommendation to be genuine, fake medicines are common.

Gillian

[helvella Administrator in reply to startagaingirl]

I am not aware of there having ever been another UK source of liothyronine tablets.

The product is not manufactured by Mercury Pharma/Concordia but by a contract manufacturer.

[startagaingirl in reply to helvella]

Sorry - I stand corrected. So is it that Concordia are the only supply source for the NHS? Or what is their involvement? I keep hearing their name in connection with it.

[Bengalgal]

Looks like you can buy it online from india for 50 cents a pill (25 mcg, or 5, don't offer 20) if you buy a large supply.