I was diagnosed with Hashimotos hypothyroidism 3 years ago. have had 3 years of feeling terrible, weight gain, hair loss, pains, high BP, high. Cholesterol and now stage 3 CKD. I am in 63 but have always looked after myself but all I was getting your TSH is good so it's not your thyroid, it's just your age. I went private about a month ago and was put on NDT it's a bit early to see if it had made a difference to me internally but externally I feel better. I have waited to see an endocrinologist for over a year and have an appt tomorrow. Is there any way that anyone knows of that I can get my NDT on the NHS.? I don't earn much but had to do it as my decline was so rapid that I feared for my life. I know that sounds dramatic but my kidneys are failing rapidly and I know there is a link with high BP, cholesterol and CKD. Can anyone advise me please?
How do I get my NDT on the NHS: I was diagnosed... - Thyroid UK
How do I get my NDT on the NHS
MAIZIEP, unfortunately, getting NDT on an NHS prescription is virtually impossible. It's an 'unlicensed' medication in the UK, which means a prescribing doctor has to take personal responsibility for prescribing, which they are unlikely to be prepared to do. Plus, it's incredibly expensive for the NHS to pay out for.
That said, there are a few people in the UK that have managed to get it, so hopefully those members will see your quesion and provide some info about how they have managed to obtain it on NHS prescription.
helvella has just posted to ask for input on how to get NDT on the NHS. Keep an eye on his post in case anyone replies with useful info healthunlocked.com/thyroidu...
Thank you for getting back to me. I think it's not likely but I know a few people did get it. I feel as if I am in a catch 22 situation now that I cannot get out of. My next appt pri lately will cost me £500 for the bloods, appt and meds and that's half my wages. But it had to be done for me to live a life worth living x
Hi MAIZIEP,
Have you considered getting your blood tests done yourself before your private endo appointment?
I've not seen a private endo but I've read many times on the forum that it's much cheaper to pay for your own private tests. If you're able to do finger prick tests that makes it even cheaper and convenient for you.
Your question might encourage private messages telling you where you can buy NDT yourself without prescription. Be aware that there are scammers lurking right here in this forum, waiting to steal your money! More info in our pinned post here healthunlocked.com/thyroidu...
Hello Maiziep :
The NHS are meant to be able to prescribe Armour or Efra - ( the 2 most well known brands of NDT ) - on a named patient only basis when. if, the patients symptoms are not resolved with the cheapest treatment option - synthetic T4 - Levothyroxine.
NDT was the original successful treatment for hypothyroidism and available from your doctor up until around the turn of the century when it would seem there was a decision to start to stop new patient prescriptions and encourage those on NDT to switch to the synthetic treatment options of T3 and T4 .
Synthetic treatment options were much cheaper and the supply pretty much unlimited thereby allowing your doctor some freedom to prescribe a treatment option from his own box of tricks.
Roll on around 10 years and T3 became extremely expensive and it was decided that doctors could only prescribe T4 -
and for those for whom this did not restore health and well being - they had to be referred back to endocrinology for assessment and in some area of the country ICB / CCG financial constraints rather than medical would appear still to be implemented.
If you go into openprescribing.net. you can see by area how active / dire the situation is in your area -
just enter your surgery or ICB/CCG area - with Armour as the NDT drug and Liothyronine as the T3 drug :
I failed to get any treatment option other than T4 - I'm with Graves after RAI thyroid ablation 2005 - and I gave up fighting the system in 2017/18 as this was simply exacerbating my symptoms and took to self medicating NDT and am much improved looking after myself.
No thyroid hormone replacement works well until your core strength vitamins and minerals are optimal - so might be worth running a ferritin, folate, B12 and vitamin D and posting these alongside your T3 and T4 results and ranges so forum members can support you and considered opinion.
Thank you so much. I am not being able to open the site at the moment. I am in Lincolnshire near Boston. I have been on NDT for about 5 weeks and think I feel better but it isn't a life changing difference. How long until you felt well? My vitamins are optimal as I checked them with medichecks.
Did you take bench readings of your TSH, T3 and T4 before switching - and what were they and what were you taking previously - T4 @ what dose and what dose of Armour has been prescribed ?
With NDT you need to start off low and slow as the T4 you were previously taking will take around 6-8 weeks to fully leave your body and in that time frame you build up the dose of NDT slowly for a smooth transition and so not to miss your best dose - sweet spot :
I was on 125 mcg T4 daily - stopped that one day and took 1/2 grain NDT the following day at the same time, in the same way I took T4 - namely at around 3 am at a toilet break -
so on an empty stomach and not eating or drinking anything but water for a good hour - so hopefully I had maximum absorption.
I monitored my blood pressure, pulse and temperature twice daily : AM and PM :
The following week I increased my dose by 1/4 grain - following week added another 1/4 grain - so forth and so on :
When I got to 1 3/4 grains I felt a little uncomfortable in my skin and not as well as the week before - so went down to 1 + 1/2 grains and stayed on this dose for 6-8 weeks and then ran a blood test.
My T3 was now 110% through the range and my T4 25% - pretty much the opposite of my results on T4 - and I was not over medicated and felt well :
My blood pressure and pulse had remained stable throughout and my temperature had slowly increased from 35.4 to 36.6 - where it still hovers today some 6 years on.
I read that if you get to 2 grains it's suggested you stay on this dose 6-8 weeks and then run a blood test -
if symptoms have been relieved and you feel you are doing ok - but with a few niggling symptoms not relieved - you start again adding in 1/4 grains weekly until you go too far and then drop back to the previous weeks dose and run a blood test at 6-8 weeks to see where you are.
If at 2 grains your symptoms are not relieved and you feel no different run a blood test and check where your T3 is - if it hasn't moved much from your bench mark readings - maybe NDT is not the best treatment option at that point in time.
Some people split their dose AM and PM - I never did :
NDT is subtle and it does take time to settle and bed into the body and around I8 months in I realised my weight and body shape had changed for the better - and found a waistline !!
My cognitive functions were seriously compromised and looking back I think these the first symptoms to lift along with a feeling of dullness and heaviness in my head.
Hope that helps - and I haven't confused you - though guess you maybe have been advised differently ?
I went from the 100.gs of levothyroxine to half a grain twice a day increasing every three days to one grain twice a day where I have been for a few weeks now. I must admit I am struggling to remember the second dose at times. I am seeing her on 7th May and she has requested cortisol levels, thyroid and vits and hormone levels. Do you pay for your own NDT or did you manage to get it in the NHS. Did your blood pressure go up beforehand and has it come down since?
I buy my own NDT - having been refused both NDT and T3 through the NHS :
I sent you a Private Message as we are not allowed to openly discuss suppliers etc - - your Chat icon - looks like a paper plane - should have lit up ?
My blood pressure and pulse remained stable and never changed from my normal - but my temperature rose from 35.4 to 36.6 where it is today some 6 years on.
Where did you send the private message to? Shall I send you my email address?
I don't need your email address -
if on a laptop look top right on this screen and you should see 6 headings :
Profile - My Hub - Chat - Post - Alerts etc etc
If on a phone they maybe bottom right :
Private messages come through the Chat icon - yours should have lit up this morning - when I sent you a message -and you just need to press on the Chat icon and are then taken to the one to one private message waiting for you :
Ok - so you have built up your dose much more quickly than I did - and it is important to maintain the same dose regime daily for optimal benefit - guessing you'll stay now on the 2 grains and wait to see how the blood tests compare with your bench mark readings.
Just reading other replies above -
as I now self medicate I arrange a nurse home visit to draw the bloods for me - it costs a little more but the option is there and I believe through Medichecks and Blue Horizon this service is now country wide and I'm sure the results will be accepted by a private doctor :
Thyroid UK - the charity who supports this forum have a whole section dedicated to where you can get your blood tests arranged - thyroiduk.org - and money off discount codes :
I use Medichecks and run an Advanced thyroid function test to include TSH, T3, T4 antibodies, inflammation and ferritin, folate, B12and vitamin D and think the cost is £89 - with the nurse home visit to draw my blood now £50 - it's my yearly MOT - so all things considered - just move on without the stress of it all.
pennyannie ' I believe through Medichecks and Blue Horizon this service is now country wide'
It does depend on where you are in the UK though. Remote areas don't have this service option because there aren't any mobile phlebotomists in the relevant location (I speak from personal experience).
Yes - when I started out self medicating Blue Horizon had no one in Cornwall and couldn't help me but thankfully Medichecks could
I recently learnt that this service is now ' farmed out ' to an agency who told me - that they have the country pretty much sewn up - but yes - totally get it - and should probably not put too much on what I'm told by someone ' in sales ' :
They might have England, 'pretty much sewn up', but certainly not the whole of the UK unfortuntalely 😞
Just looked at Medichecks and now its £59 for a nurse home visit - so not much less than the blood test charges !!
It's a lot for us to fork out on top of the test, but if you think of it in terms of fuel and wages for a qualified phlebotomist, it's not unrealistic.
You would be far more likely to get T3 (liothyronine) prescribed alongside levothyroxine
Looking at previous post
healthunlocked.com/thyroidu...
you were left ludicrously under medicated on just 75mcg Levo
Did you get levothyroxine increased to 100mcg
Your weight suggested likely to eventually have needed at least 137.5mcg Levo daily
1.6mcg Levo per kilo of your weight per day
You need to take copies of all your previous blood test results along to consultation
Ideally on a spreadsheet
Ft4 on 75mcg was far too low
Essential to test vitamin D, folate, ferritin and B12 regularly too
Is your hypothyroidism autoimmune
Thank you for your help. I was put up to 100mgs and my TSH was just below 1 so they were happy with that. I paid to see the lovely doctor at the thyroid clinic with all my results and she said that I wasn't converting. She gave me choice of T3 or NDT so I chose NDT as I wanted so badly to feel me again. I have just paid £330 for three tests recommended by the the clinic which are full thyroid and bits, hormone male and female and cortisol ready for my appt on 7th May.
I have just paid £330 for three tests recommended by the the clinic which are full thyroid and bits, hormone male and female and cortisol ready for my appt on 7th May.
Ouch that’s expensive
I was put up to 100mgs and my TSH was just below 1
And 2-3 months later most likely would have been ready for next increase in Levo to 125mcg
doctor at the thyroid clinic with all my results and she said that I wasn't converting.
What were actual Ft4 and Ft3 results
Was test done as recommended, early morning and last dose Levo 24 hours before test …..and all four vitamins at optimal level
Endo might be open to prescribing Levo plus T3 on NHS
Typically T3 dose is 5mcg three times per day
Over 65,000 prescriptions for liothyronine in England in last year
openprescribing.net/analyse...
Private prescription for 20mcg T3 per day (cutting into 1/4 tablets to get 5mcg) cost is 60-80pence per tablet……approx £15 per 28 days …..significantly cheaper than NDT
At the end of Jan my TSH was 2.47, free T3 4.2, free thyroxine 20.5. That was my last private test.
Test done as recommended?
Was this 2-3 months after increasing dose
Always test early morning and last dose levothyroxine 24 hours before test
Definitely get full thyroid and vitamin testing privately via Medichecks or B H ……far cheaper than via private endocrinologist
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