My daughter had her thyroid removed when she was little & has been on NDT for over 7 years , after it was recommended by a consultant in Sheffield . Prior to this she was ill for years on Levothyroxine / T4 - since being on the NDT it has changed her life for the better . We now purchase it from abroad because we couldn't afford to keep getting it via private prescription for her . The endocrinologist was aware - and he actually told her where she could buy it from . He did explain at the time that standard blood tests would be deranged whist she was on NDT , but we found a dose that resolved all of her symptoms and she began a normal life again. He recommended that she was guided by her symptoms - not blood results .
She is now in university and has just had routine blood tests done for her new GP surgery . They have phoned her to express their concern saying that her T4 and TSH are way above normal and said she must be over medicating and they want to review her ... however she feels really ill, shaky , cold and gains weigh on anything less than her current dose . She has been on her current doses for years .. the GP says she doesn't know anything about NDT and isn't sure my daughter should be taking it anyway because its not prescriptible here in the UK . ... we cant seem to get hold of her old consultant.
i know my daughter will not change back to the old medication .
1)i just wondered if anyone else got higher blood test results when on NDT ? as she is not sure how to respond to her GP .
2)i note that some of you refer to a list of Endocrinologists / Doctors that are sympathetic to the use of NDT in the UK - i wondered if you'd be happy to share that list with me ? we live in Yorkshire but are happy to travel anywhere .
3)And she wondered if anyone knew what the potency ratio of T3 was to T4 ..? she has had a few warnings of supply issues with her NDT and was just thinking ahead - if she was to change her old prescription of T4 to a T3 that she can source - does any one know what the ratios would be ? She used to be on 150mg T4 ( over 10 years ago)
Huge thank you to anyone that can help
Written by
caromum
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i think the GP did T4, T3 and TSH - she just said the the T 4 was way too high and all indicating that she was over medicating , my daughter is trying to let a copy of the results . Thank you so much for all the info ..
Email Thyroid UK for list of recommend thyroid specialist endocrinologists
NHS and Privatetukadmin@thyroiduk.org
Just testing TSH and Ft4 is completely inadequate, especially if on NDT
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
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 .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If/when on NDT make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I know, the GP advised my daughter to stop taking the NDT because it was overmedicating her , the GP then said hadn't heard of NDT and didn't understand how it worked , knowing that my daughter doesn't have a thyroid at all - i felt was really bad
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