Does anyone tell their GP that they are taking NDT or other thyroid supplements privately? What do you say if you are challenged about it? It seems pretty clear from the majority of posts here that GP's dont believe in treating thyroid issues that are in range and cant/won't prescribe what is sometimes needed when they are in range.
Do you tell them when you're taking thyroid meds that they didn't prescribe, and if you do, how do you defend your decision if they disagree?
sorry should have written "can't/won't prescribe what is needed when they are out of range".
I tell my GP. I think it may be important that they know what I'm doing even if they don't agree and that my medical records show it.
I definitely tell the dentist as there may be a reaction between thyroid meds and some injections - you need ones without adrenalin.
If for any reason you had to go to hospital they would also need to know in case of reactions between thyroid meds and anything they want to give you.
I would say, "you do what you have to do and I do what I have to do" period.
Lay out the facts in blunt terms, then look them straight in the eye and state firmly "now if we are going to have an issue with this" ... and stick out your hand as if ready for a firm handshake..."its best we come to an understanding right now. If you don't agree with my treatment we'll be finished as of today.. is that understood? From this point on I will expect a progressive treatment plan, and not the unacceptable results I've had thus far" How's that? (And if you say it in a voice that sounds like Clint Eastwood you might even scare them!") 🤠
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I told my GP I was thinking of taking NDT and she said she couldn't condone it so I asked if she would still do my bloods and she said yes so reassuring. Lab wouldn't but that's another story! She knows nothing about thyroid and won't discuss it but I was seeing the new Endo in a few days so promised I would tell him, he was from Romania and was happy to monitor me though I didn't tell him is wasn't NHS sourced. Sadly he was only here for a year and the new one says my results are perfect-they really are and I have a good knowledge of how the disease works and how to deal with it (!) but he doesn't want me to take it as something might go wrong. Well I might get knocked down crossing the road but I still do it! I'm now in my third year!
So fortunate that my doctor won't interfere but you need your doctor to know as your results will be very different and read differently if taking any form of T3 and getting T3 tested is a must as it is then the only accurate reading.
Thanks everyone I appreciate the feedback. I'm still on the fence about it because I dont have a great relationship with my GP and dont think that they'll be helpful or receptive. I'm only taking nutri supplements now for adrenaline fatigue and thyroid dysfunction secondary to that, not actual NDT and do not take any levo. Past experience with a mental illness misdiagnosis has unfortunately made me leery of giving any doctor too much information about myself unless it is an absolute necessity and as such I order and pay for all adrenal/thyroid tests and supplements on my own.
If I ever have to have any other meds or medical intervention I'l be sure to mention them. I can see the problem with any medications that also contain adrenaline and will carefully cross check any prescriptions if and when I may need them. I just wish that I felt I could be more open with them and that if I was that it would lead to helpful treatment...
Yes I was quite up front. I explained that I was not well on Levo and that I had noted that her blood tests , even if requested, never came back from the lab with a T3 result. I also said that I knew that she was not allowed to prescribe T3 even though I had no thyroid gland. I then explained that I felt forced to self medicate and test privately to become well and would have to buy Nature Throid for personal survival. She had to agree that all was true and did not object. Silence was golden!!
janveron1
I asked a similar question a couple of years ago when I was starting on NDT. The consensus then was to wait until you've had good improvement and you're sure you're going to persue/stay on that treatment before mentioning it.
Luckily I'm still under an Endo, so I've kind of bamboozled my GP to think it's fancy endocrine business they wouldn't understand, and pretended my Endo is taking more of a leadership role then they have. Also I've had thyroid cancer, so I've tried to roll that into the explanation, too.
My Endo actually was fairly supportive, but in a very passive way, and says I can do what I want. But we'd been back and forward on a lot of different things, with T3 and different doses and things.
Say quite bluntly to him that whatever you get now does not work, a situation that is known to exist and openly admitted by the British Thyroid Association. Tell him that the NDT or whatever works for you and you are going to keep taking it and it is surprising that many doctors refuse to admit their error in deliberately refusing to prescribe it rather than obey the instruction of the General Medical Council that they should say they would like to prescribe it but are forbidden to do so because of the stupidity of the BTA.
I say nothing. My Endo thinks I take 1 1/4 grains NDT but I take 1 1/2. My refills occur slightly earlier than if I was taking 1 1/4 but I don't think he ever uses his precious time counting how many pills equals how many months. I am just grateful to get NDT so I don't fight. Yes, I know it's pathetic, I think of it as a "don't ask, don't tell" situation.
I have responded before to this query and just explained my descision to use Nature Throid as a co-operative venture. I explained that I knew she was unable to prescribe T3 or get it tested, so I would pay for my own supply and get it tested but would keep her informed about it with copies of reports etc. She was fine with this approach.
janveron1
Before you consider starting NDT or T3 you need full testing of thyroid AND vitamins
If vitamin levels are too low and/or you have high thyroid antibodies, these need sorting first
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.
Essential to test thyroid antibodies, FT3 and FT4, plus vitamins
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
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 money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. If on Levothyroxine, don't take in the 24 hours prior to test, and if on NDT or T3 don't take in 12 hours prior to test, delay and take straight after
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are common too, especially gluten. So it's important to get tested.
Thank you Slow Dragon. These are my last results. I was taking Metavive II and Adrenavive II but did not see any major improvements, which is why I'm looking into alternatives.
Here are my lab results from last summer:
TSH - 1.48 ref 0.27 - 4.20
T4 Total - 73.1 ref 64.5 - 142.0
Free T4 - 14.16 ref 12 -22
Free T3 - 4.66 ref 3.1 -6.8
Antiperoxidase abs - 15.3 ref <34
Antithyroglobulin Abs 15 ref <115
B12 - 406 ref 140 - 725
Serum Folate - 45.40 ref 0.83 - 60.8 (It had a < in front but I checked with the lab and they said it is well within the normal range despite that.
My last adrenal function saliva test results were:
Morning
12.3 / ref 13.0 - 24.0nmol/LCortisol -
Noon
1.4 / ref 5.0 - 8.0nmol/LCortisol -
Afternoon
1.5 / ref 4.0 - 7.0nmol/LCortisol -
Nighttime
1.2 / ref 1.0 - 3.0nmol/LCortisol -
Insomnia
2.1 / ref 1.0 - 3.0nmol/LCortisol -
Sum 18.5 / ref 23.0 - 42.0nmol/L
DHEA-S Average 3.5 / ref 2.0 - 10.0ng/m
Cortisol:DHEA-S Ratio 5.3 : 1 / ref 5.0 - 6.0 Ratio
Reply
So have you had dose increase since these results? They show you were likely under medicated
FT4 and TT4 should be near top of range. FT3 at least half way in range
Insomnia is linked to low vitamin D - extremely common when under medicated
drgominak.com/sleep/vitamin...
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Suggest you also ask for the list of recommended thyroid specialists
Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3
rcpe.ac.uk/sites/default/fi...
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
See box
Thyroxine replacement in primary hypothyroidism
Banning T3 - what do you do next ? 
Dont know what to do!
What to do now? unexpected TSH results
