Hi I’m new here and live in the UK. I underwent radioactive iodine treatment twenty years ago for an overactive thyroid but now left with no thyroid function at all so have taken 150mcg synthetic thyroxine ever since. Since reading about NDT I would love to find a doctor here in the UK who would consider prescribing it. My own GP has never even heard of it and says it’s not on his list of prescriptive medicines.
Is there anyone in the UK here that can direct me?
Many thanks in advance.
Penny
Sorry about the photo.... thought it was a requirement.....
Is that you? I think you use this to screen shot blood results etc.
Sorry it was a mistake...
It's ok it reminds me of Fleetwood Mac
Folks are more likely to give guidance about treatments if you pot recent thyroid blood results and ranges.
It would be unwise to suggest treatment unless the person demonstrated a need for it.
Most people without a thyroid or who have RAI require both T4 and T3 or NDT. I am surprised your doctor has not added T3 to your T4.
Elaine Moore has Graves' and took RAI. Here is a link for her site she helped me get diagnosed 10 years ago when my doctors told me I was suffering from the menopause. Her site is full of lots of information and I would join if I was you.
Many thanks for the info and link.
I hope you get help finding a doctor that knows (more) about NDT or that you get a specialist on thyroid illnesses 😊 I’m Norwegian and have been on NDT since 2011. Before I had six years of syntetic treatment and one year T4 + T3. I still and only got worse. Beeing on NDT gave me myself back.
Unfortunately a lot of doctors in the UK won't let us use NDT. I actually purchased Thyroid S from Thailand to self treat. However Sarah Vine who is married to Michael Gove the MP is prescribed NDT by her doctor ... go figure.
Thanks for the info. I'd be very interested in the details of where you buy yours if you wouldn't mind dropping me a line to Pennylangstone3@aol.com. thanks x
I would remove your email address because this site is in the public domain. I will pm you.
Thank you so much for your reply. Yes I will try to source it
Hello Penthehen and welcome to the forum :
Natural Desiccated Thyroid was the successful treatment of hypothyroidism for over 100 years prior to the 1960s, and the advent of Big Pharma, blood tests, ranges and guidelines. It is what is called a " grandfather medicine " since it has been used for so many years, and is exempt from the exacting standards that drug companies work to and cannot be patented.
Depending upon where you live in the world, you will be offered NDT as a treatment option.
In the UK it is increasingly difficult to find a doctor knowing anything about this medication, though it can be prescribed by your doctor if he wishes to support your request on what is called a " named patient only " prescription which he has to justify to prescribe to your local health authority who " hold the purse strings " since NDT in the UK is very expensive compared to the basic T4 medication - Levothyroxine.
There are patients on NDT through the NHS - though it has become something of a post code lottery for any thyroid hormone treatment other than Levothyroxine to be prescribed mostly based on the costs of the alternatives.
Up until a few years ago, doctors could prescribe the addition of T3 to the Levothyroxine to help those patients with continued ill health, but now this has been changed as you now need a referral to an endocrinologist to sanction aT3 trial but seeing this specialist doesn't guarantee you anything and for many patients is just further disappointment and frustration in an inflexible system that is not patient centred.
Should you wish to go down the NHS route Thyroid UK hold a list of " those sympathetic " specialist endocrinologists and doctors who listen to their patient and are knowledgeable on " How to Treat " with other than the one tricky pony, Levothyroxine, T4, that we are all prescribed, irrespective of the severity of thyroid issues, let alone those people who do not even have a thyroid after a medical intervention.
I'm with Graves Disease and had RAI back in 2005, becoming very unwell some 8 years later, and deeply regret this treatment, and having failed to get a trial of T3 in 2018 I am now getting better myself and self sourcing my own thyroid hormone replacement.
You might like to read a book written by a doctor who has hypothyroidism: Barry Durrant - Peatfield writes in an easy to understand way in Your Thyroid and How To Keep It Healthy :
The Elaine Moore website is another excellent reading source on all things Graves and how to recover your health after mainstream medicine may fall short in aiding your recovery.
You need to read up as much as you can and learn how to help yourself, starting with a full thyroid blood test to include your T3 and T4 plus ferritin, folate, B12 and vitamin D as these essential vitamins and minerals are needed to be maintained at optimal levels to assist your body convert the Levothyroxine into T3 which is the active hormone that the body runs on and it is where T3 is in the range, compared to where T4 is in the range, that gives you your level of wellness.
If your doctor will not process this blood test request there are private companies, as found, yet again, on the excellent Thyroid UK website, where there is also a mass of reading and articles to help you work through thyroid issues that you maybe suffering .
You can actually check out via - open prescribing - analyse - if any NDT prescriptions are being written in your catchment area - putting in the brand name Armour instead of NDT :
Wow thank you so much for your reply which has been a great help. My email address is <personal email address redacted> and wondered if you would mind dropping me a line as to where you have sourced your NDT from please? Not sure if this group allows email addresses to be put in this forum though.
Admin note:
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Within this forum members can contact each other with what is called a PM -
I will send you a Private Message so you can see how it works -
It is essential that before you switch your medication that you go through the necessary blood tests for your thyroid, vitamins and minerals.
There isn't a quick fix and you need the necessary building blocks in place for a successful transition and especially if considering self medication with either adding T3 to your T4 prescription or moving across to Natural Desiccated Thyroid.
It could be that your existing medication simply needs to be increased so please start at square one and ideally go through the NHS as some people do get the help they need.
Currently self sourcing isn't easy as many of us look to far flung places to source our medication, and with the current pandemic supplies aren't easily available and air shipments greatly reduced.
Before considering adding T3 or trying NDT first step is to get FULL thyroid and vitamin testing
Frequently GP only tests TSH and Ft4, which is completely inadequate
For full Thyroid evaluation you need TSH, FT4 and FT3 plus tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with Graves’ disease
Ask GP to test vitamin levels and thyroid including Ft3
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus ultra vitamin
medichecks.com/products/thy...
Medichecks often have special offers, if order on Thursdays
Thriva Thyroid plus vitamins
Blue Horizon Thyroid Premium Gold includes vitamins
bluehorizonbloodtests.co.uk...
Come back with new post once you get results and members can advise on next steps
Likely vitamin levels may be low, these need to be optimal before considering adding T3 or NDT
Meanwhile email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3 or NDT
tukadmin@thyroiduk.org
Thank you so much for your reply and links. That has helped me a lot and will certainly contact them.
Penny
First step is to get FULL thyroid and vitamin testing, before considering changing anything or seeing any consultant
Come back with new post once you get results
Examples of private testing
Radioactive Iodine treatment
Confused after radioactive iodine treatment
My treatment for radioactive Iodine is on the 7th 
Starting dose for NDT after ablative radioactive iodine treatment
OH sudden increase in TSH 14 years after Radioactive iodine treatment 
