Today's the Day! DNT or Levo?: After over a... - Thyroid UK

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Today's the Day! DNT or Levo?

Hapyjackie profile image
16 Replies

After over a 3 month wait today I see an endocrinologist.

I am a nervous reck! I had some results done and they didn't show any thyroid issues (I'm on 100mcg levo)

I am fed up of weight gain and tiredness and I wanted to try NDT as I had read reports of it just not suiting some people?

Anyone out there changed for this reason? If so how did you go about it? Should I ask endo for other tests?

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Hapyjackie profile image
Hapyjackie
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16 Replies
steviecat profile image
steviecat

Just a quick reply in case you have to go... Your Free T3 could be higher. A small increase in Levo or the addition of some T3 might help to raise it. Also, your Vit B12 is too low and Vitamin D should be higher in the range. Along with optimal Folate and Ferritin, these are especially important to hypos. Good luck with the endo. Let us know how you get on...

steviecat profile image
steviecat in reply to steviecat

Forgot to say: I have no medical qualifications. My thoughts are based solely on my own experience.

Hapyjackie profile image
Hapyjackie in reply to steviecat

Thanks for the quick reply much appreciated. I have tried upping my Levo myself and that didn't work also tried less and taking it night time or morning. Nothing positive on any change at all. So will hope for something different.

Thanks again

steviecat profile image
steviecat in reply to Hapyjackie

No Problem. Did you try the higher dose for a few weeks and get retested? Are you supplementing your mins and vits? Doctors are not very clued up with regard to nutrition.

Hapyjackie profile image
Hapyjackie in reply to steviecat

Did it for about 6 weeks x no didn't get retested but felt no improvement

steviecat profile image
steviecat in reply to Hapyjackie

Well, I hope your endo has something new to offer... But you should def address your vits and mins. That just might be all that's needed.

Hapyjackie profile image
Hapyjackie

Well wish I could say I was surprised! Bloods will be redone 👍

Will not prescribe NDT "it's from animals you know" "don't think you'll find an endo who will prescribe it these days"👎

Unfortunately (fortunately for her) I don't think she knows or understands the frustration of unexplained weight gain! "It'll be because your post menopausal" Explained all the various diets I've tried and all she said was "you haven't tried the 5-2 fast diet"

I said as I understood it fasting wasn't good for someone with underactive thyroid but I'd look into it!

It is so frustrating

The blood tests she is doing are shown below

L25VD

LB12

LTHY

LTPO

LTT3

IANA

ICOEL

I've copied this off the bloods label so if anyone can tell me what they are I'd be grateful.

I'm not giving up! I will get myself sorted.

Thanks to anyone reading this

ITYFIALMCTT profile image
ITYFIALMCTT in reply to Hapyjackie

"Explained all the various diets I've tried and all she said was "you haven't tried the 5-2 fast diet."

I'm going to take a wild guess that you've also not tried the "Unicorn horn shaving soup diet", nor the "Daub yourself in blue woad and dance by the light of the moon and early morning sunlight exercise programme".

Some people, eh? Make no attempt to help themselves.

Either that, or some consultants make no attempt to listen and respond appropriately to their patients.

Which of the above scenarios seems more plausible? :)

Hapyjackie profile image
Hapyjackie in reply to ITYFIALMCTT

Thank you so much for that don't have much reason to laugh out loud these days. I now know I haven't forgotten how to 👍🤣🤣

ITYFIALMCTT profile image
ITYFIALMCTT in reply to Hapyjackie

25VD - vitamin D

B12

TSH

Thyroid peroxidase (TPO - antibodies)

Total T3

ANA - auto-immune antibodies test (antinuclear antibody)

Anti-endomysial antibody assay ('coeliac' test)

Hapyjackie profile image
Hapyjackie in reply to ITYFIALMCTT

Thank you I will just sit and wait for the results.👍

JS33 profile image
JS33 in reply to Hapyjackie

I abandoned the doctors and went my own route with thyroid -s from Thailand . I completely ignore blood results and raise to the symptoms . Getting there . Have the odd hash's flare ups , but temperature of 37 weight loss easier and able to stay stable, and my ability to actually think straight is coming back.

I should point out again that my blood levels showed I was on too much many grains ago. :) nothing to lose , past the point of giving a ...... about bloods and doctors.

Saggyuk profile image
Saggyuk

Your ferritin is over range which can cause problems. If you are supplementing iron, you should now stop and eat liver once a week to maintain instead. If you are not, then maybe a full blood count and iron panel to check what's going on there. Sometimes your body removes the iron from your blood so it cannot be used on purpose - could be illness or inflammation or even autoimmunity although autoimmune thyroid is not indicated.

Your folate and B12 should be higher. Any reason why they're low - do you eat healthily and eat enough? Do you have any stomach/absoprtion issues? Gluten free diet made me feel much better?

loobieloo123 profile image
loobieloo123

Hi, I can't help with your blood tests but I will say that you must find yourself another person to help you. These doctors make you feel like you are mad, they say it's everything else but won't admit that it is a thyroid problem. You can google and find a good endocrinologist, do your homework and find out who is open minded about prescribing NDT. I did, just recently. Mine is in Bristol, I don't know where you are. Surely natural products are better than Levo! I am starting to feel better now I am taking NDT - no brain fog, blocked sinuses. I still have some way to go and do still get tiredness and lack of energy. I have just upped my dose a bit though so hopefully that will sort it. You sound determined, just like me. Only you can make you better, believe in yourself, fight to get your own health right!! You can buy NDT yourself without a prescription you know but it is worth starting your journey with an endo so you know you are on the right track. I have cried many tears over the years and been made to feel like a fraud. The moment someone believed me, I cried tears of relief! Good luck and well done for your determination! :)

Ann-Simpson profile image
Ann-Simpson in reply to loobieloo123

Am interested that you see a consultant in Bristol. I am also seeing one there. It he is taking quite a tough line. Would yours pres vibe T3? Ann Simpson

ireenyking622 profile image
ireenyking622

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