Oops update : Hi All just a wee post I really... - Thyroid UK

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Oops update

Flower1lassie2 profile image
35 Replies

Hi All just a wee post I really wanted to share in the hope that it brings some hope and cheer to all who are struggling with Thyroid problems.

Well had my return appointment with the GP AND (drum roll) the doctor informed me I have the best thyroid results I HAVE EVER HAD IN 12 YEARS!!!!!!!! He was delighted and said that although he could not condone my taking NDT he thought the outcome was a win win situation and was very impressed with the results.

10 years on Levo, 5 months on NDT. I feel really good and would like to take this opportunity to thank Clutter and co on here for their help and advise . xx

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Flower1lassie2 profile image
Flower1lassie2
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35 Replies
lola1956 profile image
lola1956

Great news . So happy for you , always good to hear of someone recovering there health ...hopefully a wake up call for your gp about other tablets available other than levothyroxine ☺

lola1956 profile image
lola1956

Ps ...clutter is fantastic ☺

Clutter profile image
Clutter in reply tolola1956

Thank you, Lola xx

lucylocks profile image
lucylocks

That's great, so happy for you,

I have been on levo. for over four years but I am now thinking of self treating with NDT, I am just a little frightened to take the plunge so it's nice to hear you are doing well on it.

Best wishes browny

Heloise profile image
Heloise in reply tolucylocks

Absolutely nothing to be afraid of Browny except running out of it.

lucylocks profile image
lucylocks in reply toHeloise

Thanks Heloise for your reassurance.

flower1lassie2,

You are an inspiration to us "thyroidys" who are too scared to self medicate. Thank you for sharing and well done for your courage and determination.

Flower 007

Clutter profile image
Clutter

Flower1Lassie2, that's good news. How nice would it be if your GP discussed the improvement in your health amongst his colleagues.

Thank you for your kind comment :)

galathea profile image
galathea

Are you buying your own NDT or is the nhs paying? If you are buying your own no wonder the doc is happy, he has a well patient and its not adding to his costs!

How are you feeling after 5 months on NDT? I felt better as each month went by and after about a year I was great. 4 years on I would not go back to the synthetics. still haven't told my doc though :-(.

Xx. G

Flower1lassie2 profile image
Flower1lassie2 in reply togalathea

Yes I am buying my own and I also feel better and better on it as each month passes, I am just so grateful to find something that works for me and to finally be able to show my family and friends the proof if you like that my out on a limb decision to try something out with the NHS , they are lost for words , me,I'm just happy x

oozlumbird profile image
oozlumbird in reply toFlower1lassie2

This is great news! Now that your GP is on side it might be worth reminding him that he can prescribe NDT to you on a Named Patient basis. See the Thyroid UK website for more details. Good luck!

guysgrams profile image
guysgrams in reply togalathea

I'm a bit new to this approach. I'm still on Synthroid and have been for almost 19 years now. Been having a lot of hypo symptoms coming back this past year. Question: did you stop your synthetic and go strictly to the NDT? How do you know how much to take and lastly where do you buy it and what brand (I'm in U.S.)? How does your doctor not know you are taking this? I would think he/she would wonder. Thanks.

Flower1lassie2 profile image
Flower1lassie2 in reply toguysgrams

Hi , I stopped taking the Levo for a week before I started taking NDT just in case there were any conflicts then I started taking 1/2 grain twice a day in two dozes then after 6 weeks another 1/4 grain then after 6 weeks another 1/4 grain as you have to slowly increase the dose so your body gets used to it and using private blood tests to judge what I needed to do to reach optimum health for me . I buy it from a U.S. company via Internet , brand it Nature Throid. Regarding the GP question see my other posts under heading Oops you need to explain yourself to the Doctor

guysgrams profile image
guysgrams in reply toFlower1lassie2

But it states on websites that a prescription is required. How in the world did you get around that?

helvella profile image
helvellaAdministrator in reply toguysgrams

This is a UK-focussed forum. For us, we cannot buy prescription-only medicines from pharmacies in the UK without a prescription. But we can (legally - with a few exceptions) buy prescription-only medicines for the use of ourselves and our household, from any pharmacy outside the UK that is willing to sell them to us.

That means we in the UK can buy from pharmacies located in the USA without prescription.

I was under the impression that there is a similar (though surely somewhat different) legal situation in the USA - though maybe some variation from state to state and exclusions may be different.

guysgrams profile image
guysgrams in reply tohelvella

Had no idea that you abroad could do that. Maybe Mexico but I'm not sure. I know we can't State to State that I know of and Canada either.

Heloise profile image
Heloise

Excellent, flower. Thanks for writing about your experience. I hope others will at least have the courage to try NDT if they are having difficulty with synthetic T4. I hope it keeps up for you.

shaws profile image
shawsAdministrator

Great news and opens the doctor's eyes. Imagine a patient taking levo for 12 years and now nearly back to normal health within months of taking a thyroid hormone replacement developed around 1892. Yet, the modern endos have turned their backs in favour of one that gives the pharmaceutical companies large bucks plus the additional prescriptions for the 'symptoms' and many patients who remain unwell.

bobsmydog profile image
bobsmydog

Brilliant news, thank you for sharing!

I told my GP yesterday I'd switched to NDT. I'd been worrying needlessly as he was very accepting of my decision and offered to continue checking bloods.

RedApple profile image
RedAppleAdministrator

Excellent! Really good to hear this Flower1lassie2! :) Hope you don't mind but I've popped in to your post in order to place it into the new 'Success Stories" category. I'm sure others will be spurred onwards and upwards by reading upbeat, positive posts like yours :)

Stormx profile image
Stormx

Wonderful news, Hallelujah

bless, i am so happy for you Flower1lassie2! :) smiles

all around

now you can live life at the best of who you are

Philly2748 profile image
Philly2748

Can I please ask what made you change from levothyroxine to NDT and why you changed. Also won't GP's give us NDT is we ask for it? I am recently diagnosed and on levothyroxine but am finding all these posts a bit overwhelming as my know,edge is so limited on underactive thyroid issues. Your feedback would be helpful. Thank you

Flower1lassie2 profile image
Flower1lassie2 in reply toPhilly2748

The reason I changed was for 10 or so years I had been treated with Levo and couldn't seem to feel well the catalyst for my change was that my step daughter ended up with a thyroid condition out of the blue and she was treated with totally different medication (linothyrine and Armour) even although we were seeing the same endo!!! When I asked to try same type of meds he told me it was just a placebo effect although she got well really quickly so really that made me do research to see what was available elsewhere and in the end I was so desperate living a crap existence that I decided to try NDT much to the horror of my friends and family .What can I say except it worked for me might not work for everyone, but I' m thankful for it. I have Hashimotos . Hope you feel well soon x

Flower1lassie2 profile image
Flower1lassie2 in reply toFlower1lassie2

Philly2748 forgot to say a lot of the weird symptoms I had on Levo , lack of brain communication , lethargy , sleep, general dullness these things all disappeared rapidly after I started taking NDT

Philly2748 profile image
Philly2748 in reply toFlower1lassie2

Thank you for explaining, it is always good to hear positive feedback and I am pleased you are feeling a lot better, long may that continue for you.

HarryE profile image
HarryE

Hooray for you lassie! I'd like to add the same, to anyone scared to take the plunge, go for it. & much love & thanks to all the people who saved my life last year xxxx

Flower1lassie2 profile image
Flower1lassie2 in reply toHarryE

Glad you are also feeling well x

ppf123 profile image
ppf123

I'm very pleased for you. Keep up the good work

sulamaye profile image
sulamaye

How much NDT are you now on?

Flower1lassie2 profile image
Flower1lassie2 in reply tosulamaye

2grains split into 2 doses per day

Flower1lassie2 profile image
Flower1lassie2

Yes no probs I will be happy to supply my info, hopefully tonight x

narayan8 profile image
narayan8

Yay for you!!!!!

imagisal profile image
imagisal

So great to hear your success story with NDT . I am close to trying it myself but giving Nutri Thyroid a go first as directed by Dr P

I will read your test numbers with interest . Best wishes

Gillsy profile image
Gillsy

Hi are you taking armour if so, where r u getting it from. I was much better on armour.

Flower1lassie2 profile image
Flower1lassie2

Serum Free t4 10.8 pmo1/L. 9.0-21.0 U

Serum TSH level 1.30 mU/L. 0.20-5.00 U

Free t3 level. 5.5 pmoI/L. 3.1-6.8 U

Female

10st 4lb

2grains (spilt into 2 doses per day)

Nature Throid

Hope this info helps others x

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