NDT. Starting out.: I’m new to all this but... - Thyroid UK

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NDT. Starting out.

walden53 profile image
23 Replies

I’m new to all this but learning fast. Have been on levothyroxine for over a year, take every supplement known to woman, follow a gluten-free, good fats heavy, low sugar, mainly organic diet, do yoga, have acupuncture, take Epsom salt baths etc. I’m close to being a being a paragon of virtue so it is soooo annoying that I still feel like crap.

So think it’s time to take back control. Was going to add T3 to my medication but that’s priced itself out. Now thinking of switching to Nature throid.

I’m a bit nervous about going it alone. Have a few questions for anyone who can relate to starting out. Is it likely my GP will still monitor me if I self medicate with NDT ? Will I need a prescription for Nature throid ?

And finally, can somebody please PM me with a UK based pharmacy where I can obtain it?

Thanks.

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walden53
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greygoose profile image
greygoose

'take every supplement known to woman'

I don't like the sound of that! Some supplements really aren't good to take. One has to be very selective. I think it would be a very good idea if you told us exactly what you're taking, and what made you start taking it. :)

Before changing to NDT or adding T3, you would need complete bloods done, to know exactly where you are :

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

You can get these done privately because the NHS won't do all of them. Details of private tests on the ThyroidUK main page.

It is possible to get Nature Throid without a prescription, only not at the moment, it's out of stock everywhere, due to alterations to the production line.

Whether or not your doctor would still follow you when taking it, would depend on your doctors open-mindedness and attitude to that sort of thing.

Do you have any idea why you're not getting on with levo? How much are you taking? Does your doctor only test the TSH? Do you have an absorption problem or conversion problem? Some problems would be best sorted out before attempting to take Nature Throid, or you won't get anywhere with that, either. :)

walden53 profile image
walden53 in reply togreygoose

Sorry it's an essay !

In my desperation I have done quite a bit of research and am hoping I’m not just scatter - gunning with what I take. There’s a lot of rubbish (both information and products) out there so have tried to filter.

This is what I take :-wholefood Vit C, raw Zinc, Vit B complex, (micronutrients to stimulate TSH)

Arctic cod liver oil - Omega 3, Vits A & D - & for its anti -inflammatory properties.

Adaptogenic herbs :- Ashgawanda and Rhodiola (to support the adrenals)

Magnesium glycinate, (to assist T4 - T3 conversion and for sleep.)

Triphala , Digestive enzymes. Sometimes HCL with Pepsin. Kefir or probiotics (to help heal leaky gut.) plus bone broth ,acv. etc

I use brands like Pure Encapsulations, Garden of Life ( all with no fillers )

My GP is supportive so ran the following bloods but according to NHS benchmarks, all came back as “ normal” no adherence to where I am on the range.

These were the last results :

TSH -2

FT4- 16 pmo/L

FT3- 4.21

TPO antibodies 9 IU/ml

Tg antibodies 8 IU / ml

Vit D - 62 nmol

Vit B12- 358 ng/L Range 197-771.0

folate 8.0 ug/L Range 2.0 - 18.7

ferritin 61.5 ug/L Range 20-260

Am a novice compared to many of you, so any advice is welcomed.

greygoose profile image
greygoose in reply towalden53

"This is what I take :-wholefood Vit C, raw Zinc, Vit B complex, (micronutrients to stimulate TSH)"

I have no idea what 'raw zinc' is, but I'm not sure any of that stimulates TSH. However vit C and zinc will help with all sorts of things.

However, whilst you need B vitamins, it's advisable to get B12 and folate tested before supplementing. You need to know if your B12 was low enough to suggest Pernicious Anemia, and if so, get tested. You will not now have that base-line - unless you got tested first - unless you stop it for 5 months.

Arctic cod liver oil - Omega 3, Vits A & D - & for its anti -inflammatory properties.

Once again, vit D should be tested before supplementing, because you need to know how much to take. Too much is not good.

Ashgawanda and Rhodiola

These two are adaptogens, and whilst they are supposed to raise low hormones, and lower higher, they tend to either over-stimulate a gland (not a good idea with a sick gland) or be better at lowering than raising. Depends what you want, but do be careful of anything that is supposed to 'support' a gland.

Magnesium glycinate

Good to take as it is a cofactor of vit D3. But, I'm not sure how much it helps with conversion.

Triphala , Digestive enzymes. Sometimes HCL with Pepsin. Kefir or probiotics (to help heal leaky gut.) plus bone broth ,acv. etc

All good if you can tolerate them.

But, I'm afraid there are a couple of things missing. Selenium is the most important for conversion. And, if you're taking vit D - and it looks like you do need some - you should also be taking vit K2 - MK7. Taking vit D3 increases absorption of calcium from food. K2 makes sure that extra calcium goes into the bones and teeth, and doesn't build up in the soft tissues.

There's not a lot I can say about your test results, because you haven't given any ranges. Ranges are very important, because they vary from lab to lab. And you need to interpret the result according to the range used in the lab that analysed the blood.

However, a TSH of 2 shows that you are under-medicated. When on thyroid hormone replacement, it should be one or under.

Was that B12 done before you started supplementing, or since? If since, it won't be a true reading. But, it does show us that what you are getting from the B complex isn't enough.

Your ferritin is rather low. It should be over 70 for your body to be able to use thyroid hormone. And, that's all I can say without the ranges. :)

hendb profile image
hendb in reply togreygoose

very informative,thanks a lot greygoose.

greygoose profile image
greygoose in reply tohendb

You're welcome. :)

walden53 profile image
walden53 in reply togreygoose

Most helpful, thank you so much.

Have added the ranges to my previous post.

I only started taking the B complex after I received these results

I get some Vit D from the cod liver oil but think it is only a trace. I don't take separate A and D vitamins.

greygoose profile image
greygoose in reply towalden53

OK, I see. I doubt very much that there's enough vit D in cod liver oil to raise your level. You haven't given a range for that, but I think it should be about 100.

And there's definitely not enough B12 in a B complex to raise your B12 over 500 - which should be the minimum. If I were you, I would get 5000 mcg sublingual lozenges of methylcobalamin to take daily. When the bottle is empty, buy 1000 mcg, as a maintenance dose. And, keep taking the B complex.

Your ferritin and folate should be at least mid-range.

And, we do need the ranges for the thyroid hormones and antibodies. :)

walden53 profile image
walden53 in reply togreygoose

Thanks for sharing your expertise in interpreting the blood results. Am impressed. Will follow your advice and add to my supplements. Though I wonder if the Brazil nuts daily I eat daily aren’t sufficent selenium ?

walden53 profile image
walden53 in reply towalden53

PS How long did it take for you to get your handle on all of this and,if you had to specify just one source of information that has educated you, where would that be ?

greygoose profile image
greygoose in reply towalden53

Oh my golly gosh! Difficult question. The first book I ever read on hypo was Mary Shomon's Living Well with Hypothyroidism. Very basic information, but gave me a clue as to where I could find more information - because I was totally lost. Best of all, it gave a link to her forum, at the back! That's when I really started learning. And went on from there to other forums, to get a sort of global education.

Then, I read Broda Barnes' book Hypothyroidism : The Unexpected Illness, I think it was called. That got a bit more technical and gave me a grounding in technical terms and a curiosity to learn more.

As you're already on this forum, so have a basic grounding, I would plump for Broda Barnes. :)

greygoose profile image
greygoose in reply towalden53

Ah, that old chestnut! (Pun intended) It really does depend on the Brazil nuts. And, unless you have a home chemistry set, you really can't know - although I've no idea what the test for selenium would be. It depends on how much selenium was in the soil around where they were grown, and that's a complete unknown. Most soils are depleted these days.

However, just as an aside, I think the only reason I survived my childhood - having been undiagnosed hypo most of my life - where my cravings for certain cheap and cheerful foods, like liver and cods roe. Not to mention eating the raw fat that surrounded the kidneys from the butcher's. And, at Christmas, gorging myself on chestnuts, Brazil nuts and bananas must have set me up for the year to come. Not the NHS orange juice and free school milk -ugh! I think if I was a kid these days, well, who knows what would happen to me!

walden53 profile image
walden53 in reply togreygoose

Thanks for giving me such helpful advice last week. Since then I’ve made quite a bit of progress prompted by your replies. I’ve managed to up my dose of levothyroxine by 25 mg through talking to my dr on the phone (still possibly not enough but at least in the right direction.) Have ordered all the supplements you recommended ( though am struggling to find a soy free Vit K but will pursue that further) Have cut out the rhodiola but will continue the asghawanda as I’ve been on that longer and I need maximum sleep help.

I’ve found the name of an endocrinologist in the North, recommended on this site and I’ve made contact to arrange an appointment. But am going to wait a while before I go to see him or do anything drastic to see if I feel any benefits from the regime I’m on now.

On the subject of your childhood intuition of what to eat, I had a jog to my memory reading your post. I always chose herring roe on toast whenever we went out for tea and we ate lots of offal and cuts of meat with lots of fat. ( Child of the 50s obviously)

Anyway, once again, thank you so much for the really helpful and detailed feedback.

Jane

greygoose profile image
greygoose in reply towalden53

You're very welcome.

Don't worry about the vit K2. It's made from nato (I think) or some other fermented soy, so it's ok to take. :)

Lilackeith profile image
Lilackeith in reply togreygoose

I am very interested where you can get nature thyroid without a prescription? Does anyone have any ideas when the production issues will be resolved as I have 3 weeks worth left. Thanks

greygoose profile image
greygoose in reply toLilackeith

Best to write your own question. You will get more answers that tagging an extra question on here. :)

SeasideSusie profile image
SeasideSusieRemembering

walden53 You are fine, this is your thread, so don't worry. Startagaingirl was replying to another member who jumped on your thread, looks like it was Hendb and that particularl post has been deleted.

Greygoose has responded to your original post in this thread, so you are fine to respond to her reply to you.

It does get a bit confusing when the name of the member being responded to isn't mentioned in the reply.

greygoose profile image
greygoose in reply toSeasideSusie

Perhaps startagaingirl could remove her comment, now, please, because that is totally confusing! lol

startagaingirl profile image
startagaingirl in reply togreygoose

Done - sorry for any confusion, I will quite the name in future!

greygoose profile image
greygoose in reply tostartagaingirl

No problem. :)

greygoose profile image
greygoose

This forum isn't like others, it works in a different way, so don't worry about it. We all make mistakes. :)

Given that you are taking Triphala, I presume you are having issues with constipation / slow digestive transit. I have had similar issues & recently discovered that I am sensitive to Acacia powder AKA Gum Arabic, which is a binder used in some brands of Levothyroxine. It sounds like it's a common allergen for people who get hayfever. I swapped to a brand without it, and there was a huge improvement, plus I felt so much better that it appears to have been affecting my absorption. I have been able to lower my meds as a consequence. It would be worth checking the ingredients of whatever brand you are currently taking.

I take T3 in addition to my Levothyroxine, and my (also supportive) GP gives me a private prescription which I send to a German pharmacy to get filled. The process is very straightforward. T3 there (Henning Thybon) is also prescription only, but much much cheaper than here and good quality. I know may people swear by NDT, but if you can get a Levo & T3 combo to work for you it offers the flexibility of being able to vary the proportions of the two easily.

walden53 profile image
walden53 in reply to

Thanks for that tip. I just double checked the ingredients and my brand doesn’t contain gum arabic. I don’t get hay fever as such but since the onset of hypothyroidism I do sneeze quite a bit and definitely think one problem might be absorption, so it was worth checking.

Still in two minds about which route to take. I did favour the T4 / T3 route initially and told my GP that’s what I wanted to do. Like yours he couldn’t prescribe it ,but was more than happy for me to go down that path. .But I would definitely have to go outside the UK to be able to afford it. (Asked the UK price of brand you take and nearly fell off my chair! )

Would you mind sending me a PM with the German pharmacy details ?

in reply towalden53

Have you tried taking your Levo at night, just before bed? There is evidence that as long as you haven't eaten or had coffee for the previous two hours, it can aid absorption. It didn't work for me, but it does for many.

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