Help with my GP and NDT

[TheresaGreen1967]

Hi, I have been on ndt for low thyroid since May 23. My GP has requested a blood test, I told him that I am taking ndt and he asked me what that was. I said that all my symptoms have gone and I feel great. My issue is, my blood test will now show (to him) that I am yo yoing to hypothyroid. As my last private test showed. But I was reassured that this is normal on ndt. Is there any information that I can show him ? What can I do to reassure him I am ok as he will flip and want me off the ndt and he is such a lovely GP and I don’t want to come across as obstinate. Any thing I can read up and print off ? He said we need to get my thyroid balanced or it will affect my bones and metabolism. Being on ndt I feel great but my thyroid according to bloods is not balanced. Does this mean trouble ahead? Thanks

[Sparklingsunshine]

Are you self sourcing your NDT rather than getting it via NHS? Because if you are buying it he cant force you to do anything and nor should any medical professional force a patient to do something they disagree with. Its supposed to be a partnership between the doctor and patient, not a coercive relationship.

And if you mean you are heading towards hyperthyroidism then unless your FT4 and FT3 are over range you can't be. And even if they are too high it simply shows over medication, not hyperthyroidism. NDT contains T3 which suppresses TSH, its just what it does.

Unfortunately doctors dont see the diference between untreated hyperthyroidism and those of us with low or suppressed TSH levels due to being on adequate thyroid replacement therapy. I'm just wondering why you need a blood test?

[AliasWillow in reply to Sparklingsunshine]

Thank you for this post. I know understand why my TSH levels are extremely low. I am taking NDT and I was wondering why my TSH levels were so low as I knew I did not have any signs of hyperthyroidism. You made my day!

[SlowDragon Administrator]

Essential to test TSH, Ft4 and Ft3

Also Vitamin D, folate, ferritin and B12

What vitamin supplements are you taking

If GP is concerned about bones he should do Dexa scan

Several members have seen bone density IMPROVE once Ft3 levels are OPTIMAL

Osteoporosis is not linked to TSH

thyroidpatients.ca/2018/07/...

[greygoose]

He said we need to get my thyroid balanced or it will affect my bones and metabolism.

What does he mean by 'balanced'? Seems a strange word to use in connection with the thyroid. Being hypo affects your bones and metabolism. When taking thyroid hormone replacement of any sort, for hypo, you need what you need, not what your doctor thinks you ought to need. But I can't see that balance comes into it.

[Hidden]

If you mean that he will see that your TSH is most likely very low, as it often is when taking T3, there could be trouble ahead. Your doctor does not seem very open-minded to put it mildly.

Remember, most doctors have been told in medical school that levothyroxine is all that is needed and that you are "optimal" once your TSH falls anywhere in range. They simply don´t know any better☹️.

This means that you are likely to have to self-medicate unless you can find a doctor who knows what NDT is and how to use it (that is, raise it until you are symptom-free, not until your TSH is in range). If your doctor knows so little about thyroid disease and treatment, do you really need him?!

[Amethist]

Having the blood test is completely in your control. If you don’t want it , cancel it. Or say they can only test for certain things- like vitamins , CBC, but not thyroid . It’s your body, you decide.

If you had sought help from your gp before regarding your thyroid and they hadn’t been of help, say so and that you are grateful as it sent you down an alternate route which has restored your health, plus you are now saving the NHS money so everyone is happy 😊.

GP’s can only do tests/ treatments etc with your permission. You need to be in the driving seat, not a passenger. He advises, you decide.

[Brightness14]

When taking NDT it contains T3 which then lowers your TSH Most GP's no nothing about the thyroid and only test the TSH which is pretty useless. You need you TSH, FT4, FT4 tested at minimum.

I have been on NDT for over eight years and my TSH is low suppressed. I have the bones and heart of a forty year old I am 77 years old. I have no thyroid and always feel well when on NDT.

Which NDT are you taking. By the way I have not told my GP that I am taking NDT it is my business, they would just keep me feeling ill.

[pennyannie]

Hello Theresa :

If still collecting the prescribed T4 - Levothyroxine - I believe a yearly thyroid function test is required by the NHS -

I advised my surgery I was taking NDT and that I did not require my presciption for T4 -and offered to comply with the yearly function test providing a Free T3 and Free T4 were run -

or, alternatively I could furnish them with my private yearly blood tests for my medical records and heard back nothing and that was in around 2018 - and eventually T4 was removed from my prescription.

On NDT once optimally medicated you will likely have a low/suppressed TSH - your T4 likely lower than when on T4 monotherapy BUT your T3 proportionately higher -

however I think I remember that you were only diagnosed in May and your T4 was low as you had only just started taking Levothyroxine - so we probably can't judge how well T4 monotherapy would have worked for you.

No thyroid hormone replacement works well until your core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D - are up and maintained at optimal levels as just being in a NHS range somewhere, not acceptable, as some ranges are too wide to even by sensible.

Did you run bench mark readings of T3 and T4 before you switched to NDT - how are these looking now and are you tracking yourself on blood pressure, pulse and body temperture twice daily whilst you find your optimal dose ?

[serenfach]

Yes, Doctor, my results look odd to you, but as I told you, I take NDT and this alters things. I can send you some information on NDT if you would like. I am so pleased you are open to this and as you can see, I am well.

stopthethyroidmadness.com/n... is useful here.