Has anyone taken the route of going private?? Any positive experiences and is it worth the money?
Recently I’m getting more reluctant relying on nhs for my correct dosage of synthetic thryroxine. I know there are other options out there.
I had a TT last August. Currently on 100mcg thyroxine
35years old.
I have my thyroid gland and can only feel well on liothyronine (T3). I believe people who've had a TT should, at the very least be given a combination of T4/T3.
If you email Dionne at TUK she has a list of helpful private doctors. Email below:
tukadmin@thyroiduk.org
Many thanks
I've seen 2 privately and both a waste of money, private doesn't necessarily mean any better.
Yes, I and my husband ‘go private’ albeit with the support of our nhs gp. So we get our T3 via the private endocrinologist and our T4 via the nhs. Many here are prepared to fight or are obliged to use the nhs 100%. But I have tried both private and nhs and don’t relish dealing with medics who won’t or can’t listen to and learn from patients.
Many thanks. I’ll govebit a try
I could never have forgiven myself if I had given up and gone private to get better treatment after my total thyroidectomy when I realised the NHS was never likely to give me any better treatment.
I started on NDT (I found Thyroid-S was the best for me) and have spent the last 5 years or so complaining. I really thought I had succeeded on a couple of occasions, but it wasn't to be. I have put my case to the British Thyroid Association (who have failed to answer, as expected) and copied my letter to about 24 other medical institutions and am currently stuck where the Health Ombudsman is asking me for a copy of the refusal of my Individual Funding Request by my local CCG and the CCG ignoring both my request for a copy of it (which they have never done, but that is quite another story!) and also failing to acknowledge their receipt of a copy of my letter to the BTA from 2 months ago.
I may have failed to achieve anything much yet, but it is giving me a great deal of enjoyment gathering together the evidence that the reasons given for the blacklisting of NDT are total bo**ocks and that those who support the status quo are totally insane.
After a TT it is quite normal to NEVER get well on Levothyroxine, whatever dose or brand you take. If you go to a private endo the best treatment you are ever likely to get is a private prescription for Armour NDT. The cost would be 10 times what you can get a similar product from abroad in addition to the endo's fee. Some patients take comboned levothyroxine and liothyronine (T4/T3), I have never tried this. I consider the longer you leave it till you get a better treatment, which I consider to be NDT, then the less permanent damage you will do to your body whilst several hormones necessary to good health are absent from your body. I believe that my kidney cancer was caused by taking levothyroxine alone for 8 years, but I cannot prove it.
Do yourself a favour and get some NDT and treat yourself, unless you want to join me in endless complaining. Details are available on this site on how to go about it.
Many thanks. I really don’t know about ndt at all. I will look into this!
I hope you are well after your illness.
Roughly where in the UK are you ?
Email Dionne at Thyroid Uk for list of recommended thyroid specialists who will prescribe T3
But BEFORE seeing any private endocrinologist you must get FULL Thyroid and vitamin testing
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Do you always get same brand of Levothyroxine?
Many thanks. Do you have her email address to hand please? I had a full blood test including vitamins back in April. Came back that vitamin D was low. I do have the other results that I posted on here.
I wasn’t aware of different brands of thyroxine??! Have only ever used mercury pharma??
Good that you always get same brand of Levothyroxine
Dionne email on here
thyroiduk.org.uk/tuk/About_...
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
Are you now supplementing vitamin D?
If so how much?
Has level been retested since
GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve by self supplementing to at least 80nmol and around 100nmol may be better .
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Retesting twice yearly via vitamindtest.org.uk
Vitamin D mouth spray by Better You is good as avoids poor gut function.
It's trial and error what dose each person needs
& yes I did follow the blood rules.
No good experiences at all in fact just my bank balance being drained. The only way I have become well after my TT in 2015 is to self medicate with NDT which I source myself. I have a full thyroid blood test once a year sometimes two just to check my levels through Medichecks. I haven't visited a GP or Endo for over two years now and feel great. I am 73 next month and have just started jogging again I used to run but have to start slowly.
Can you advise how you know how much ndt to prescribe yourself please and also where do I buy this from?
Many thanks
So glad to hear you’re feeling great!!
How much depends on the results of your blood tests.
For where to get NDT, email Dionne at Thyroid Uk for a list of private endos/GPs who will prescribe. I have to admit that I found a consultation with a private GP not at all useful other than to walk away with a prescription for NDT. I am hoping to just keep getting repeat prescriptions rather than spend money on any more consultations.
It is also possible to purchase NDT from abroad (e.g. Thailand), but that can hit issues at customs and I personally wouldn't be confident about safety (although others on here do purchase from Thailand).
Many thanks. She has given me a list. I’ll get in touch with them.
Private Endo in Bristol
GP referral to Private Endo
Private endo not much help...
Referral to private Endo
prep for private endo appt
