Nice guidelines are that taking someone off NDT, they should have regular testing and be under an endo.
My experience is that 1 visit to an endo + one t3/t3 tsh test, then discharged ( even though levels of t3/t4 were low). Any t3 test my GP asks for are not done. I have become very unwell over 6 months due to this.
My question is, if the guidelines are not followed and I am not monitored, a) who do I complain to? and b) would this be medical negligence?
Since I also suffer from bile acid malabsorption, which means my food is not fully absorbed, it was found I am low in d3, and various other vits and minerals (now supplementing, though it is an ongoing problem).
Will malabsorption affect conversion of t4 to t3? Is that why NDT worked better for me before they refused further rx?
I also read somewhere that there can be exceptions to the no NDT order. Can anyone clarify/help/explain?
(Also, does anyone know where I can buy NDT?)
Thanks in advance!
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Yes, I believe it is all associated with being hypothyroid as ferritin, folate, B12 and vitamin D need to be maintained at optimal levels - and not just anywhere, in their ranges, as these support your core strength ensuring optimal efficacy of the thyroid hormone replacement.
No thyroid hormone works well is vitamins and minerals are not optima
I'm sorry I can't advise regarding the level of care you have/not received as I gave up a couple of years ago and am self medicating with NDT and so much better.
There is no history on your profile :
I'm with Graves post RAI thyroid ablation in 2005 becoming very unwell some 8 years later and found no help or advice within the NHS .and referred to as a conundrum and only ever offered Levothyroxine and antidepressants.
Thyroid uk hold a list of " friendly endo's and doctors " but within the NHS there are very few not following the rules as laid down by the local CCG authorities.
If you go into - openprescribing - and then analyse you can see by CCG and surgery where any NDT is being prescribed in your area: simply put in Armour as the drug :
NDT is available on the NHS as a " named person only " prescription and your doctor needs to support you in this treatment option and put a case forward to the local CCG as the cost of NDT far exceeds that of Levothyroxine.
Are you on levothyroxine instead..if so ....how much
Clearly you need to get FULL Thyroid and vitamin testing 6-8 weeks after any dose change (or brand change) in levothyroxine or NDT
Can you add thyroid results from when on NDT and any more recent results and ranges
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Do you have Hashimoto’s
Ask GP to test vitamin levels
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)
If/when also on T3 or NDT make sure to take last half or third of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thanks so much for your reply, it was my gp's surgery who took me off NDT, CCG won't allow it. Have been fighting it since. I was on 4 grains Armour, they took me off it and started me on 25mcg Levo, that was in Feb. You can imagine what happened! I'm now on 150mcg.
Yes I have Hashi's, diagnosed 1984 fought for NDT when I became informed, rx'd about9 years ago, no problem till last year.
Vit levels being tested by hospital treating my malabsorption ( very recently diagnosed).
Thanks for all your advice, am not taking this lying down!
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private who will prescribe T3 or NDT
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of where TSH is) ...important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
All four vitamins need to be OPTIMAL for good conversion
As you have Hashimoto’s are you on strictly gluten free diet and/or dairy free diet?
What vitamin supplements are you currently taking?
What were most recent results and ranges for
Vitamin D, folate, ferritin and B12
If taking any supplements that contain biotin you need to stop these a week before ALL blood tests as biotin can falsely affect test results
You might find my profile helpful
It’s perhaps easier these days to get T3 prescribed on NHS than NDT
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