Patient Review- Basildon Hospital,,Essex

I have just returned from the hospital where I had a review.Basically it was to fill in a survey,answering questions about my T3 medication.

I was asked questions about my health prior to being diagnosed hypothyroid and after being prescribed T4.At what stage was I prescribed T3 etc.what difference had it made to me? Lots of information given and I was impressed by how much the registrar listened and commented on.

There is no doubt that they are trying to weigh up the cost of T3 to the NHS against the benefit of prescribing it to patients.

I was asked if I knew the cost of T3 in Greece............yes....pence......I have bought some.

He smiled. I said that I could feel a few Greek Holidays coming on!! To which he nodded in approval.I asked about the strength of Greek T3,stating that it came in 25mcg tablets and was assured it is fine.

I had to agree that the cost to the NHS is scandalous and that other sources should be found.I also questioned about Armour Thyroid,but found the jury still out on that one with regard to consistency and reliability.

However,I personally would be happy to buy that myself if pushed into a corner.

It worked well for me except that I was not confident about the possible need to increase dosage as it couldn't be done separately for T4 and T3.

He also asked about Vitamin D and said they recommend a weekly intake of 5000 mcgs as a maintenance dose.....I take 1,000mcgs a day.....that's fine.

well I think that's about it......will be keen to hear of anyone else's experience if called.

Meantime,I carry on as normal 100/75 T4 and 10mcgs T3 until I see my Endo in June.

[SeasideSusie Remembering]

That sounds quite encouraging Hidden

I like the fact that he nodded in approval at the suggestion of Greek holidays, it's obvious what you meant! Good to know that he thinks Greek T3 is fine, they're certainly doing a fair bit of business with us Brits!

[Hidden in reply to SeasideSusie]

I don ' t actually buy it as I am on a NHS Mercury Pharma prescription,hence the call to do the patient review this morning.I did buy some a couple of years or so ago,but would have to check out an available source myself now........hence the suggestion of a Greek holiday......Perhaps someone else can advise?

I have just read Marz's reply from earlier on,so that isn't looking good either....Oh Dear !

[humanbean in reply to Hidden]

I think you should read this post on the subject of NHS T3 :

healthunlocked.com/thyroidu...

[SeasideSusie Remembering in reply to Hidden]

Hidden I don't need a source, I have one.

If you read the post I put in reply to Marz, you will see an explanation of why there's been a problem and how the situation is now. My supply is due in a few days' time.

[Smotv80 in reply to Hidden]

Ah I see, I thought you had ordered it as above you said you had bought some!

I got the wrong end of the stick sorry 😊

[vm133]

Could you PM me with details of where you buy T3 please.

[Hidden in reply to vm133]

See above......

[Clutter in reply to vm133]

Vm133,

Marfit74 said she is prescribed NHS Liothyronine. If you want sources for T3 please Write A Post asking members to PM you sources.

[Smotv80]

At least he has gave you peace of mind that stuff from Greece is fine to take.

That also puts my mind at rest!

Could you pm me the website you buy from please 🙏🏼😊

[Clutter in reply to Smotv80]

Smotv80,

Marfit74 said she is prescribed NHS Liothyronine. If you want sources for T3 please Write A Post asking members to PM you sources.

[Smotv80 in reply to Clutter]

Yes and she also said she had had some from Greece before. I assumed she had ordered it so I asked for her source.

I didn't realise we weren't allowed to do that and we had to create a separate post.

[Clutter in reply to Smotv80]

Smotv80,

She also said she doesn't have current sources now. Requests for T3 are not relevant to Marfit74's post so please write your own post.

[ColinK]

I'm due an endo appointment in the next few weeks at Southend, will be interesting to see if they have the same open views, but I'm not holding my breath. Currently taking a combo of NDT and T3.

[Smotv80 in reply to ColinK]

How are you finding the combo Colin? 😊

[ColinK in reply to Smotv80]

Have to say the best I've ever felt was when the levo was working as it's supposed to, however like most on here after a few years I was struggling having issues converting. I'm not feeling that bad in that I can cope day-to-day OK but still struggle with weight, breathlessness and some other things that come and go.

[Smotv80 in reply to ColinK]

Have you checked your adrenals Colin?

[ColinK in reply to Smotv80]

Not had them checked, but I did buy some Nutri Max which I did not feel great on so stopped taking.

[Smotv80 in reply to ColinK]

Yes, Nutri Max are more to support the adrenals as opposed to fixing them.

It is definitely worth having an adrenal stress profile done. The cheapest I found was Genova (via Thyroid UK - £85).

It is a 4 part saliva test taken at specific times of the day. If you have high or low cortisol it can affect the way your medication works.

I have recently started treating my adrenals as I have high morning cortisol, and I have definitely felt less breathlessness since addressing the issue. 😊

[Hidden]

You'll likely be asked much the same as me..I guess the more information they can gather from patients in their own surveys the better.All we can do is tell it as It has been for us on our thyroid journeys.....Good luck when you go to Southend.

A combo of NDT plus T3 sounds interesting .Was it prescribed or did you have to buy it yourself? .....What sort of dose would you need that keeps you well?

[ColinK in reply to Hidden]

Was on 100mcg levo for a few years, then moved onto NDT and I went all the way upto 3 grains which was way to high, then dropped down to 1 grain and added some T3. Was better than when I was on levo and having all sorts of issues that my GP wanted to treat as separate issues, then decided to go on T3 only to sort out my high RT3, now back on 1 grain NDT and 18mcg T3. Never told my GP but had a blood test before Christmas which showed suppressed TSH and low T4 so I had to tell him why, he just said it was pointless him seeing me and referred me to the endo.

[Hidden in reply to ColinK]

They don't seem to grasp that the only reason we self medicate is in order to search for a sense of well being.Does it not occur to them that we would much rather be getting on with life and not having to suffer this debilitating condition.I went for 10 years under medicated whilst being told there was nothing wrong with me,even though I recognised symptoms my mother had suffered.I hope you feel well soon.

[scorpiojo]

I've been thinking of you all day... Sounds as though they are leading to limitation and for a newby like me just a year on t3 many on t4 without it helping, worrying... As I bet the Chinese lady who gave it to me was told right off... I couldn't go, but I'm up for a fight... I'm so fed up with wastage and health tourism and feel if they started on them 1st then bare down on other stuff I'd be a bit more understanding!! Those whose parents and grandparents paid in here must be screaming from their clouds.... I bet my Dad is... Glad you feel confident mate... Big hugs Jo

[Hidden]

Hee Hee !!.....be careful Jo......I'm 76 yrs old now but not yet in the clouds 😊 Thank you for your thoughts today.It will be interesting to see how many here get invited to contribute to this survey.If the NHS want to withdraw Mercury Pharma T3 then they will have to find an alternative.It would seem that Greek T3 may get a price hike too.

I have to say that I totally agree that the NHS should not be paying this scandalous price and told the registrar so,especially having seen the MP suppliers in a picture outside a mansion!!.........

[shaws]

That sounds like a very positive experience for a change. Let's hope some sensible doctors listen to the patients who need T3, either added to levo or T3 only.

[Hidden]

Thanks Shaws.My son contacted me this morning to see how it had gone and stated that he reckons that regardless of the paper survey report that much of what I said to the registrar who interviewed me will get passed on to his senior.....ie my Endo,for whom I have much respect.I hope so.