Thyroid UK

Endo hadn't heard of NDT !!!

Can't believe what I sat through this am with the Endo appointment I had.

It started with her shouting....like I'd been refered to Audioigy. Asked what I want from her.... When I said how terribly unwell I had become on Mercury Pharma Levo, like I'd been poisend, after Eltroxin no longer available and I would like to try NDT, she said "whats that" !!! I said Natural Dessicated Thyroid and she days "never heard of it"!!!

She then said something else ( I won't go into details now because I may take it further..I'm giving myself today to calm down!) and when I confronted her about it she then lied and totally denied she had said it ! This was said in front of my wife, and a student nurse I had agreed could sit in. They had heard it too! Unbelievable! How can I have faith in an Endo that doesn't know what NDT is and the lies and denies what they'd said. My wife and I walked out in a state of shock.

Sorry....just realised this is more and a rant than anything else.

Where can I find an Endo that actually knows what they're doing ? I'm in the Gloucester area.

What are the cost implications of going private ?

Apologies for the rant and thanks in advance for any help.

Nigel

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That is the NHS for you.

Save yourself a world of aggravation and buy ndt online like i do. You do need an endo or anyone else. I am going it alone and have single-handedly transformed my health.

Lying and false record keeping is endemic in the nhs, as is ignorance - see my posts elsewhere

Frankly, the nhs is a health hazard.

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I am gob smacked! This beggars belief. Its no wonder we don't find any decent Endo's to make us well.

I hope you find better treatment elsewhere.

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Email me for some endos.... and private docs...

louise.warvill@thyroiduk.org

I would also appreciate the name of this Endo please to add to the 'avoid' list.. thanks!

L

x

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Who does the avoid list get shared with? a while back i was asking about an avoid list, cannot remember whether it was this forum or another - anyhow my question was not well received. But we can save people a world of aggravation with an avoid list.

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It doesn't get shared with anyone. It is for our reference in case people contact us about a particular Endo and we can pass on feedback that we may have.

If I do pass on feedback - good or bad - this is anonymous and I always make it clear that this is just one person's experience and that someone else may have a different one.

We would never dream of publishing a list of Endos to avoid, this would leave us open to litigation.

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I realise that, which is why i wondered how the info would be used to benefit people .

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Hello, Flatfred. Well, Why am I Not surprised by your experience today? because the very same happened to me recently. Like you, I could not believe that a Consultant (?) Endocrinologist (?) had Never heard of NDT !!! Unfortunately, there is definitely more than yours out there (I am in Northampton). My friend was with me and could not believe how ignorant he was about the thyroid, he did not even examine me. I started self treating with Nature-Throid six weeks ago and it is making a difference already. It has been/will be hard financially, but after twenty two years of horrendous health, I have no other option. It has been worth every penny though. I am not telling my gp as he threatened to withdraw All his services if I did ! I wish you and your wife well and I know you will receive valuable help from the lovely people on this forum.

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Thanks for the words of support. And yes, what a God send this site is !

I've had no thyroid meds for over a month now as I can't tolerate generic levo' sand as far as Mercury Pharma... I think they should be sued and have their license pulled as that stuff is soooo wrong it's toxic. It's not just a case of I couldn't tolerate it....it made we really unwell....literally like I had been poisend!

Still feel very unwell and starting to get a little desperate.

Nige

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HI Im in Northampton too, can you tell me where you get your nature throid from please? Can you email me?

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I used to feel like that on levo. It was killing me. I was barely functional - and then to have to fight the system. I only wish i had just gone straight to self medication.

When i said the levo was affecting me, i was shouted at "it's not the levo!"

Later, a private specialist agreed that the binders and fillers in levo were making me sick.

You are not alone, there are so many who have had to help themselves. I'm surprised you haven't been labelled "depressed" and had anti-depressants shoved down your throat.

You do not need an expensive private endo, a private gp is cheaper and can still prescribe armour or other brands of ndt

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Hi

How do we find a private G.P. please

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please see Louise's post above - just email her for a list :D

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Many thanks, I have the list but I just thought it was endos on the list not private G.P's. I will have another luck.

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why bother with an endo

just order NDT and get yourself well

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Hi Nigel,If you look at Thyroid Patient Advocacy forum there is a Dr P and I think he holds clinics in Malvern.I should tell your Gp about your experience and ask for a second opinion.

I also felt as if I was being poisoned on levo-even the liquid so it wasn't the fillers.Luckily the hospital prescribed T3 and I feel so much better.However consultant wasn't impressed with suppressed TSH and has now changed me to Armour[NDT] saying it was safer.A year ago it was a no-no so things are changing.When I was talking to him he didn't understand Ndt but as soon as I mentioned Armour or Erfa he understood.I know this info. doesn't help you but I do understand how you feel,some consultants are so patronizing

Regards Jill

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"Natural Desiccated Thyroid" is very much a term used by patients - with some of the towards-alternative medics also using it. You will not readily find it in any medical documents.

The medics tends to use the terms "Desiccated Thyroid", "Desiccated Thyroid Extract", "Thyroid USP", (historically) "Thyroid BP", and the best known manufacturers' brand names - Erfa, Nature-Throid and Armour.

So I find it little to no surprise that any individual doctor is not familiar with "Natural Desiccated Thyroid".

It is also quite possible that at least some medics confuse the non-prescription desiccated thyroid products such as Nutri-Thyroid with "Natural Desiccated Thyroid". I don't blame them for that. There is no obvious border between Nutri-Thyroid which says it has no thyroid hormone in it, Thyroid Gold which most obviously implies that it does have thyroid hormones, and the products which have declared thyroid hormone content. Indeed, some research has raised lots of questions over what some of the non-prescription products do actually have in them.

I'd always suggest that a patient wishing to bring up the subject should try to use the most appropriate terms that their medic is most likely to have heard of and, in general, avoid the term "Natural Desiccated Thyroid" like the proverbial plague.

I'd add that using the abbreviation NDT is an even worse idea. You add unfamiliarity with a TLA [1] to everything else.

Rod

[1] TLA = Three Letter Abbreviation

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Wish I had read this comment before sending a letter to my endo yesterday

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Sorry I didn't let you know earlier!! :-)

I try always to avoid "NDT" (except when quoting). But it feels like a one person crusade as the term seems totally entrenched within the patients groups.

Having expressed unhappiness with "NDT" on many occasions, and others having disagreed with me so completely, it feels like a waste of time continuing my disagreement. In the circumstances of writing a letter to an endo, however, it really might be important.

Rod

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Thanks Rod. Im here at royal free waiting for my appointment let's see what they say. I've gained 10kg since last app and the other symptoms haven't improved also. Let's see if they are going to prescribe "desicatted thyroid extract USB" ;)

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Hi Brubru - Have previously been to the same hospital. Would be interested in your experience. Could you send me a PM please?

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Boy, did I wish I'd known this sooner! Thank you.

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You're so right Rod. Just out of the app. I can buy the NDT at health shops but just make sure I keep taking the Levo with it ;). Seriously???!!!!

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Thanks Rod, I never knew this. I just call it what I have seen other people call it :-)

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I'd also point out that few here would quickly understand what "NTH" is.

It is, actually, yet another term for desiccated thyroid. Natural Thyroid Hormone.

Rod

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Thanks to Louise and the rest of you for the kind words of help, support and info.

GP's now away until next week but have made an appointment for follow up.

Thanks again all.

Nigel

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You ARE entitled to ask for a different brand of Levo. I can only tolerate Wockhardt, and that is on my notes now.

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Same with me. This is the only brand. But I get from tesco 100 and 25mcg. So just 2 tablets

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You ARE entitled to ask for a different brand of Levo. I can only tolerate Wockhardt, so that has been entered on my notes now. They only do the 25mcg dose, so depending on your dose, you may have to take more than one tablet, but they're very small.

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Yes Im interested in going down this route. Just called endo again as on 200 levo a day but feel dreadful. He told me last time it was nothing to do with my thyroid! Even though my T3 is bottoming out and I still have awful symptoms :( Im at the point of jacking it all in and going private

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Hi just thought i would say isnt it disgusting how these specialists talk to us, i too had a nurse in with me recently when my rheme spoke terribly to me. so bad that when i went to leave the nurse discretely gave me a card on patients rights for complaints. I did not follow thru as he is the only rheme in the area so will have to see him again .

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Yes it is, mine has tutted and rolled his eyes at me a number of times. If they don't want to deal with people, they should bog off and get another job!

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Good grief! Can't do that!!! Do you know how much these barnacles on society's bum make in a year??? They're not going to give that up, no matter how incompetent they are... :(

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Take this further if you have a witness.....sorry you had a bad time......you can ask for a second opinion but anyhow hope someone has helped you more than I can....im moving to the Gloucestershire area too....

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