Endo Appointment Trials and Tribulations

[AGGIE75]

Just give you a quick update, I am on a steady dose of 5 grain NTD (Thiroyd from Greater Pharma) self treatment. I do well on this dose, and feel completely normal (I had gone up tp 10 NDT end of summer, due to an enormous amount of stress, but I am now back down to 5).

October 21st I had my first Endo Appt I had been waiting for for months (I have terrible insurance) my idea was to get on the legal side of things, get on a prescribed medication, etc. She advised me to come off of NDT and have blood tested in four weeks.

I complied with it until yesterday and it had been almost three weeks off NDT. I could no longer function, depression set in, slow speech, slow thinking, my body was aching, I couldn't get up the hill on my bike, etc. People started noticing my face and commented. My business partner put a veto on this experiment and I agreed. I can not experiment like this unless I take a vacation to do it. Maybe one day down the road. But for now I am stocking up on my NDT (I noticed it was out of stock, yikes, I am ordering the other one, I guess).

On December 1st my new job insurance kicks in, maybe I will be able to see a different Endo, who would be willing to work with me somehow without coming off NDT completely.

[SeasideSusie Remembering]

What was your doctor's reason for coming off NDT for 4 weeks?

If you've been well on it and know much you need and your test results don’t show overmedication, I would be inclined to have said I'm not happy to be a guinea pig so go fly a kite doctor.

Apparently Thiroyd seems to have gone the same way as TR and is no longer produced, Thyroid-S seems to be the only Thai NDT available now.

[AGGIE75 in reply to SeasideSusie]

Thank you, Susie! Yeah, I just bought the Thyroid S and hope it's the same or similar. My TSH is supressed on NDT and the doctor said she could not tell if I was Hypothyroid unless I was off NDT (she treats based on TSH). While I don't disagree with her, I just couldn't comply with this line of treatment. My TSH was normal in the past, that's why I never gon proper treatment and went the self treatment route. I guess maybe she didn't believe me, I really have no idea how irresponsible a doctor can be. You know, the usual.

[SeasideSusie Remembering in reply to AGGIE75]

Taking NDT will lower, even suppress FT3, because of the T3 in it, it's just what it does.

[AGGIE75 in reply to SeasideSusie]

Agreed. I wish she would agree to interpret my test results without having to come off NDT.

[silverfox7 in reply to AGGIE75]

Is there another doctor that you can see? This one is never going to help you I’m afraid. Who diagnosed you in the first place?

SeasideSusie has mentioned that when tested properly you TSH will be suppressed but there are other changes. If you are on the correct dosage for you then TSH suppressed, FT4 can lower in its range but FT3 should be in the top quarter but never over. Only the FT3 is an accurate reading so you can no longer check if you are converting well but generally on NDT providing your dose is high enough then your body will probably get all it needs by just using the T3 component. When I first started on NDT in the 1980’s then I wasn’t even tested! Times have changed though sadly.

[AGGIE75 in reply to silverfox7]

Thank you for reply. I was originally diagnosed by GP, but my labs were fine except for low cortisol. He suspected either Hypothyroidism or Addison’s. My thyroid ultrasound shows missing chunks out of the thyroid gland). He sent me to a specialist, but I dropped the ball because it was getting too expensive ($250 a visit plus labs). I ended up ordering Thiroyd online and have been on it for a year and a half. I wanted to get in the legal side of things and this fall I finally went to this Endo that was covered by my insurance (Healthfirst) and she was he one who told me to get off. I’m going to wait until my new job insurance kicks in (Cigna), and maybe I’ll have better luck.

[serenfach]

Just to let you know I am on Thyroid-S and doing OK. You may find it a smidge stronger than the one you are on now, but let your body tell you what to do. And dump that doctor!