T3 and endo advice needed / East Sussex

[zendogmaz22]

Hi, am really struggling to get T3 medication. I asked for an NHS referral to Sunil Z but got declined due to being out of area. I live in Brighton and he's Surrey and Sussex NHS. Can they just decline like this?

I don't have limitless funds to do endless private blood tests and consultations. The cost of living crisis makes it too expensive.

What do we do if you can't get T3 but are currently taking it?

I really wish we could take the NHS to court for malpractice around all this. It's a genuine nightmare!

[PinkSkittles]

I bought 2 boxes of t3 (100 tabs in each) for £39. Not sure if thats too expensive?

[zendogmaz22 in reply to PinkSkittles]

Where? I didnt realise you could just buy it? That cheap compared to private prescription cost.

[Jaydee1507 Administrator in reply to zendogmaz22]

Group guidelines mean that we cannt name sources of prescription medicines like T3 in the group. Please use the personal messaging system.

I will also add a warning as your post might attract a PM from one of the scammers.

⚠️ IMPORTANT! When you receive a message with a recommendation, please do not assume it is genuine!

Scammers are joining the forum on a very regular basis and messaging members with their assertions that they have successfully purchased xyz medication from zyx source.

First, do check the profile of the member that sent you the message. (You can find their profile by searching for their name in the member list here healthunlocked.com/thyroidu...

Are they a long term member with an active forum posting history? (Just be cautious and check with admin)

Or are they a recently joined member with little or no posting history? (Do be very suspicious and check with admin)

**** Scammers even join our forum and post a 'fake' story about their thyroid journey, that includes mention of self sourcing their thyroid meds. This is to encourage members to ask them where they purchase their medication without prescription.****

-------

Once you have what you think may be a genuine recommendation, you are strongly encouraged to message an Admin to ask whether the admin team have any feedback on the source you've been given.

Please also tell admin the member name/s that messaged you so that we can check them out if necessary.

Admins are not allowed to recommend sources, but we can tell you what, if any, feedback we've received about the source you've been given.

⚠️ Don't part with your much needed money until you are as sure as you can be that the source is genuine.

Read the full post: healthunlocked.com/thyroidu...

[zendogmaz22 in reply to Jaydee1507]

Thank you. But I really just need to find effective treatment. All this text about scammers is making me more stressed in an already very stressful situation.

[Jaydee1507 Administrator in reply to zendogmaz22]

You were asking for the source of T3 which is against our group guidelines. Forwarned is fore armed where scammers are concerned, especially if money is tight.

Roseway pharmacy offer a reasonable cost prescribing service.

I know its difficult in Sussex to get T3 prescribed. Can you contact your local integrated care board to find out about a referral out of area?

[zendogmaz22 in reply to Jaydee1507]

Am just so fed up with all of it. It shouldnt be such a battle. It's so draining when you're already chronically poorly.

[zendogmaz22 in reply to zendogmaz22]

And those private endos and doctors on the list are money grabbers taking advantage of poorly people. Shame on them!

[Jaydee1507 Administrator in reply to zendogmaz22]

I agree with you completely. Thyroid UK are fighting for better treatment as are other organisations, mean time we can only work with whats available. It really is a post code lottery.

There's noone that I know of on the NHS in Sussex ICB. Ask them about it.

[PinkSkittles in reply to zendogmaz22]

I will private message you. Its a website so Im not a scammer. Happy to say my real name privately.

[PinkSkittles]

Interesting about being declined. Ive seen lots of Drs out of trusts and never been declined. How about trying the next closest Trust?

[zendogmaz22 in reply to PinkSkittles]

Oh that's even weirder. I think he is the next closest. I live in Sussex which seems kinda cruel. You can't get much closer.

[PinkSkittles in reply to zendogmaz22]

That's bad. I would try the next closest. Is there one?

[PinkSkittles in reply to PinkSkittles]

I just checked the thyroid uk list- there is one in London who prescribes t3. Thats not far from brighton. You could do what im doing ask for a referral out of trust (again for you) and buy it yourself in the mean time for a few months.

[zendogmaz22 in reply to PinkSkittles]

The Harrogate chap? I can try.

[PinkSkittles in reply to zendogmaz22]

No Tooting. Harrowgate isnt in London

[SlowDragon Administrator]

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

[Smpeat in reply to SlowDragon]

‘Ideally choose an endocrinologist to see privately initially and who also does NHS consultations’

Are you suggesting that once you see an Endo privately who also practices in the NHS they will eventually take you on as an NHS patient and continue to prescribe NDT or T3? My private Endo said he would see me in the NHS but would not be allowed to continue prescribing NDT. Compromise is I only see him once a year he gives me private prescription for NDT. I can contact him by email if I have any issues. This has cut down the costs but I find it galling to have to go private to manage a life long condition.

[Karen-Eleanor in reply to Smpeat]

Hi Smpeat Really interested in knowing who this is - please could you pm me.? I’m about to trial T4/3 on NHS but might need a plan B to go back to AT. My Endo won’t prescribe NDT at all. Thank you

[SlowDragon Administrator in reply to Smpeat]

You won’t get NDT on NHS

If T3 suited, you could probably get that on NHS

Increasing numbers prescribed T3 alongside levothyroxine

over 64,000 prescriptions in England in last year

openprescribing.net/analyse...

[PinkSkittles in reply to SlowDragon]

You can get NDT on the nhs. Thyroid uk has a list.

[PinkSkittles in reply to SlowDragon]

Kent, Essex and Stafford all have Drs who prescribe Armour on the NHS. Ive also read that an NHS endo in Reading does too but its not mentioned on the thyroid uk list. Wales is also on an old thyroid UK list but not the current one.

[SlowDragon Administrator in reply to PinkSkittles]

waveylines will be interested in this

Perhaps she will PM you to get contact information

[PinkSkittles in reply to Smpeat]

Thyroid uk has a list and there are some nhs endos on there who prescribe armour NDT.

[SlowDragon Administrator in reply to PinkSkittles]

Interesting…..wasn’t aware anyone on NHS would prescribe NDT for new patients

[PinkSkittles in reply to SlowDragon]

I've asked for a referral to the Reading one. I'll ask him if he prescribes NDT to new patients.

[ThyroidieGriaffe]

healthunlocked.com/thyroidu...

Ppst by Charley Farley on patient rights, may help with out of area. It's worth challenging the ICB about why they want to keep you in area. Good luck.

[Delilahmy]

hi Zendogmaz

I really wish we could take the NHS to court for malpractice around all this. It's a genuine nightmare!

Then maybe that’s what we should do ….. !!

It shouldn’t be this difficult to get support to get well …. To start t3 and to stay on it when it works …. And to help manage and monitor our own healthcare careplan

[SassyMH]

I am in West Sussex and see an Endo in Buckinghamshire. I asked my GP practice to refer me to a specific Endo who I had heard was knowledgeable about Thyroid. First consultation was face to face, subsequent are telephone. I thought you could request anywhere in England?!!

[zendogmaz22 in reply to SassyMH]

Maybe some of the in-demand ones dont accept referrals from anywhere but the area. Impossible to know. It's a lottery!

[Annib1 in reply to SassyMH]

OK, but who pays for your T3?What are the rules in the 2 ICB's? I am in Devon and went to an NHS endo over the border in Somerset who prescribed me levo plus 20 mcg T3 daily but you cannot stay under the endo. You have to go back to your GP and my GP will only give me 10 mcg of liothyronine daily as those are the rules in Devon. I have to buy more privately to top it up.

[SassyMH in reply to Annib1]

My GP says if an Endo has said there is a clinical need then he will prescribe it, which he does. I know I am very lucky