Advice needed with NDT dosage.: Thank you for all... - Thyroid UK

Thyroid UK

122,394 members142,913 posts

Advice needed with NDT dosage.

Jenny583 profile image

Thank you for all your help, you lovely people! My brain fog is starting to lift now after the near 2 weeks of increased dose, I can even do sums like 0.01 x 0.14 without asking teacher!

However I need to get things done asap so need more than 14% brain function. I definitely need to increase FT4 & FT3 levels.

FT4 is 35% UNDER RANGE. FT3 is only 32%.

I have gone steadily downhill over last year, together with hormone levels, I think there may be a connection.

My hair is not growing at all, I have chronic sinusitis, weight gain, brain fog & forgetfulness, left nostril bleeds almost every day, eyes are inflamed with blisters under lids & in corners of eyes. Inflamed, itchy & sore scalp. Temperature down & not steady. Erratic sleep patterns.Indigestion. lower & slightly unsteady temperature, exhaustion & extreme apathy, though fatigue improved a bit with increase of NDT.

Neck is swollen & throat & neck usually sore, neck glands? Also, my cough was getting really bad & persistent especially at night, I need to know if this is caused by NDT excipients, or some new autoimmune disease, or even too low FT4? These are just a few of the new baddies.

BTW, I was at my best (briefly) when I took bovine metavive + (briefly) a good dose of tiromel. But FT3 went over range, & neck was painful & started swelling + cortisol was very low test 9.20 AM. So I had to stop T3.

One way to 'scratch & see' would be to increase NDT dose to 1 & 3/4 & observe either improvement or otherwise.

Monitor my health have a 20% off sale on so as my last test had so many mistakes making it suspect, I think I should order one last test, as it's my birthday tomorrow.

Does this sound like a good plan? Thanks.

Here are results with "Monitor my health".

RANGE ALL (TSH - (0.27 - 4.2) FT4 (12 -22) FT3- (3.1 - 6.8)

24-11-21 (on 75mg NDT) - TSH 0.14 - FT4 8.5 - FT3 4.3

14-9-21 (bovine metavive & NDT) - TSH 0.01 - FT4 -12.8 - FT3 - 4.9

5 -7-21 (bovine metavive & T3?) - TSH 0.01 - FT4 -14.7 - FT3 -5.4

11-5-21 (bovine metavive alone?) - TSH 0.02 - FT4 -12.5 - FT3 - 4.4

8-1-21 (bovine metavive & T3) - TSH - 0.01 - FT4 -19.72 - FT3 9

33 Replies

Neck is swollen & throat & neck usually sore, neck glands? Also, my cough was getting really bad & persistent especially at night, I need to know if this is caused by NDT excipients, or some new autoimmune disease, or even too low FT4?

How about low T3 causing it? Your FT3 is very low. So low, in fact, that you're still hypo.

And what about nutrients? You haven't mentioned them. Have you had vit D, vit B12, folate and ferritin tested? Those symptoms do sound like they could be due to nutritional deficiencies to me. So, if I were you, and you're going to get a new private test, I'd make sure it was one that included nutrients.

:)

Jenny583 profile image
Jenny583 in reply to greygoose

Thanks greygoose. You give excellent advice as always! I take the best vitamins, & also a vitamin D3 + K2 sublingual oil. I think it may have been you that educated me on nutrients when I 1st joined the forum!

I don't have access to tests of any kind. The problems I now have started & old problems worsened soon after I started the NDT a few weeks ago. I was taking T3 & high dose bovine metavive before, & as seasidesusie wisely pointed out I needed to go in slowly with the NDT as we didn't know if my eyes, nose & chest were bad from excipients in thyroid preparations.

The fact that my usually 0.01 TSH increased 14 fold is concerning, especially as I have no way of knowing if I bought kosha NDT. But hopefully it's just a case of needing higher dose.

I bought an active B12 FP test last Xmas, result was good. It's almost certainly the low thyroid levels to blame now for many ills, especially in light of the escalating TSH. I'll increase again next week, & probably end up on 2 grains before long. I need to keep warm as I tend to get hypothermia, low temp & living in appalling conditions with no benefits or £ = bad. Will have to go by symptoms alone next year.

🙃

greygoose profile image
greygoose in reply to Jenny583

What do you mean by 'the best vitamins'?

I don't have access to tests of any kind.

Well, you do, because you've already had 'Monitor my Health' tests.

The fact that my usually 0.01 TSH increased 14 fold is concerning

Well, that's not surprising if you went from T3 & high dose bovine metavive, to a low dose of NDT. And, you're still on a low dose of NDT, so best thing to do is increase it and see what happens. I would be very surprised if the NDT you bought wasn't kosher (perhaps not the best adjective to use, given that it's pig thyroid lol), we don't hear much about people buying fake NDT. Maybe substandard, but not fake. So, I would imagine that your just not taking enough yet. :)

Jenny583 profile image
Jenny583 in reply to greygoose

Lol "kosher"

🐷 ndt, my brain fogged adjectives proves your point gg! I went low & slow as advised, but I followed the rule of test after 8 weeks, & then test on base, I increased at least twice in that 8 weeks. But 1st test - sample was haemolised.

I also dosed to weight, per kilo, plus a bit extra.

BTW my vitamin, calcium, & D3 levels, & iron improved dramatically last year when FT3 & FT4 increased. Got dismissed by Endo who does not see metavive as a real medicine, & hates T3, hence no support or blood tests from Dr's. I didn't know that vitamins can be checked by finger prick tests, not that I can afford those kind of tests.

I will however increase NDT - again, next week to 1 & 3/4 grains.

☺️😋

greygoose profile image
greygoose in reply to Jenny583

I also dosed to weight, per kilo, plus a bit extra.

You do know that dosing by weight is just starting point, not a fixed rule, don't you? Everybody needs what they need regardless of weight. The idea is to keep increasing until you feel well, no matter how much that takes. :)

Jenny583 profile image
Jenny583 in reply to greygoose

Thanks gg, I did guess that, just shocked at the difference in results in such a short time, but then I'm new to all this, & as I keep saying, extremely brain fogged.

I have just had to email monitor my health to try to cancel the blood test as the 20% off code(not for the 1st time) did not transfer.

As it's my birthday tomorrow & things always go wrong this time every year it's no real surprise though.

😬

Ajva profile image
Ajva in reply to Jenny583

Also my t3 is high and I am having very similar reactions to you…

Jenny583 profile image
Jenny583 in reply to Ajva

Is your T4 under range? when my T3 went over range my T4 went optimal for the 1st time, but I was on BOVINE metavive & Tiromel which is pure T3. Have you tried bovine whole glandular? The nucleotides in bovine metavive are much much lower than the porcine metavive.

abirose311 profile image
abirose311 in reply to Jenny583

Bovine Metavive is not mainly T4! In my humble opinion it's a complete con!

It may contain no actual thyroid hormone whatsoever! It is a food supplement

I wrote to 'The Natural Choice' to ask how much T3 and T4 could I expect to find in their product, as compared to other NDT's

Below copied and pasted is their reply from Liam Young

I am sorry but no. Metavive is a meat based food supplement, not a licensed prescription medicine. As such, the manufacturers do not measure hormones, do not make any claims for hormones, nor for medical uses for any of their products. So it is not possible to compare them with your current prescription medicines.

All we can suggest is that you work with an experienced doctor, naturopath or nutritionist who is used to using these particular products (e.g. Rodericklane.co.uk). Those practitioners should then be able to help you optimise your use of these supplements, as part of a broader dietary and nutritional support program.

Jenny583 profile image
Jenny583 in reply to abirose311

With the greatest of respect abirose311 I need to point out that though your reply is technically correct, & though I dislike metavive (more on that later) - for some people diagnosed hypothyroid but for whatever reason are unable to obtain treatment from Dr's or any other source - it is often all that is available.

For the record metavive (bovine) kept me alive for some time, as it was all that was available & also kept my FT4 in range at a time when stuck & very ill- then after a few months I was able to obtain Tiromel, so was able to get both FT3 & FT4 in range by combining the two. The metavive (bovine) in a high dose I found kept my FT4 in range as I don't seem to produce any T4 of my own. I found the dose I needed was expensive, but the Tiromel was inconsistent in quality & only available on shopping site, with the result that half the T3 I bought were bad batches, making it impossible to quantify my progress.

As I had developed problems with my eyes (among other things), & not knowing if this new problem was connected with the metavive, & having for the 1st time found a source of porcine NDT thanks to a forum member - I decided to compare the 2 by transitioning from high dose bovine metavive to NDT. My eyes got worse, but my depression improved.

In summary; good for you if you are in a country where you are able to obtain prescription medicine. As for those like me that can't, we will get whatever we can as long as we can. as for me, I just want to get out of bed so that I can put my affairs in order, that's it.

Remember that big pharma & whole glandular sellers ( for all their faults) are at war, some of us are caught in the middle of that war, whether we like it or not.

abirose311 profile image
abirose311 in reply to Jenny583

You say......The reason that metavive (and other whole glandulars is advertised as a meat supplement is simply because it would be banished by the pharma power block if any thyroid content revealed. That's your theory. You don't say which country you are in.

I live in the UK where I have not experienced any problems buying NDT online from overseas. I guess I am lucky.

However, my point still stands. I have passed on the information from metavive for those who are lucky enough to have a choice, and who may be buying metavive believing they are buying NDT, when those who sell it, say it is not.

I apologise if my sharing the claims of metavive has upset you.

Jenny583 profile image
Jenny583 in reply to abirose311

I am not upset at all. I was lucky to be able to buy NDT for the 1st time recently, thanks to the addition of paypal with one supplier. But it was high dose bovine metavive that kept me alive until 3 months ago. I live in a clown dependency.

I suspect that I am allergic to NDT, if I am more ill as I increase then I will have to try & source Tiromel (T3) low cortisol or not. I would prefer to try Levothyroxine, but cannot obtain any!

I agree you should spread the message that whole glandulars are not NDT, I found metavive IV strong but rather expensive, hence I have not ordered any more, & the high % of nucleotides in the porcine met is alarming.

I apologise for rambling & not making sense, I am under range & very brain fogged.

Oh, you have that sort of birthday, too, do you? Not me, but my daughter always has something go wrong around the time of her birthday, so I know what it's like. I'm sorry to hear you have it too. :)

But, Happy Birthday for tomorrow, anyway. Hope some things go right and that you have a lovely day. xxx

Jenny583 profile image
Jenny583 in reply to greygoose

Ooh bless you greygoose, & thank you! I'm sorry your daughter has the same problem.

I hope you both have a lovely day tomorrow too! xxxx

🤗

greygoose profile image
greygoose in reply to Jenny583

Thank you. :) At least your birthday is on a Sunday, so you don't have to go to work.

Jenny583 profile image
Jenny583 in reply to greygoose

I haven't been able to work for decades gg, what with all the hypochondria...

greygoose profile image
greygoose in reply to Jenny583

ah, sorry to hear that, Jenny. :(

Have you considered that your problems may have started when you switched to porcine NDT. I started taking Erfa and as I slowly increased my dose I felt worse than before. I couldn’t understand why I had more and more symptoms until I got hold of the PIL (pharmacy didn’t send me one with my tablets). It appears that I was suffering adverse reactions, possibly due to the development of hypersensitivity to animal protein in whole thyroid 😱

Jenny583 profile image
Jenny583 in reply to Gingernut44

I have almost no options where I live Gingernut44. (Not in UK). I switched from bovine metavive because porcine NDT became available to me for the 1st time recently, & because I was experiencing problems with my health in new ways, & didn't know if it was caused by the new excipients (nucleotides) they had started to add to the metavive .

But in answer to your question "Have you considered that your problems may have started when you switched to porcine NDT." - I had considered that maybe something in them caused breathing problems & mouth ulcers etc, hence all the ???'s? but the animal protein question hadn't occurred to me though, just all the dyes & things in thyroid S, as my sensitivities have increased so much.

Then again it could be 0 to do with the ingredients in the NDT for me, it may relate to all the increasing toxic black mould I have to live with, as well as lack of fresh air/exercise. Or both.

What is "PIL"? pleased you got to bottom of it. What are you taking now? are you able to take tiromel or cytomel? they seem to be the purest. It's all a giant obstacle course ain't it?

Hope you well. Best wishes. Jenny

Gingernut44 profile image
Gingernut44 in reply to Jenny583

Sorry, PIL - Patient Information Leaflet. , which should be issued with every “medication”. You even get one in every packet of paracetamol!

It was just a thought as I started having lots more symptoms and thinking they were hypo, just raised my dose of Erfa until realisation hit and looked at helvella’s list and found the info on Erfa.

I tried Thyroid S a couple of years ago but didn’t get on with them (possibly the excipients).

I’m also having a problem finding a T3 that I can tolerate. I seem to be very sensitive to different fillers 😕

Jenny583 profile image
Jenny583 in reply to Gingernut44

I feel awful for you Gingernut44. It's worse than the dark ages for us females.

The excipients may be a problem we both share, I had few problems with Tiromel, but finding a reliable source proved impossible as well as the expense, & with no prescriptions & paying GP's £70 just to be told "computer says no, cough" did me adrenals, patience & wallet in.

Metavive was only option for a while.

I hope & pray you find the answer & get well. x

Gingernut44 profile image
Gingernut44 in reply to Jenny583

I’m really trying (in more ways than one 😀) I’ve tried Tiromel but that made me wheezy, Uni Pharma gives me joint pain, I had an allergic reaction to Thybon Henning, Cytomel made me nauseous. I’m running out of options but chasing pharmacies at the moment trying to find two new T3 hard capsules listed by helvella in his superb list. No luck so far although they were supposed to be available in the last quarter of 2021.If I manage to find them, I’ll post where they can be obtained.

Good luck with your search.

Jenny583 profile image
Jenny583 in reply to Gingernut44

Oh poor you! Good luck to you too.🤒

helvella profile image
helvellaAdministrator in reply to Gingernut44

I keep hoping someone will report they are actually available!

Gingernut44 profile image
Gingernut44 in reply to helvella

Me too 🙏

Anthea55 profile image
Anthea55 in reply to Jenny583

Some of us had bad reactions to the new Metavive with nucleotides. I had to give it up. I put on weight quite quickly. Do be careful.

As you said, Metavive is a glandular and not an NDT. Several posts about the changed Metavive.

healthunlocked.com/thyroidu...

Yes, I have seen most, if not all posts on that, very disturbing when we have so few choices as it is. Some ( like starsw ) have had autoimmune thyroditis kicking off from the nucleotides & kindly warned us. I took the bovine metavive that has much less nucleotides, but I put on a huge amount of weight, & started getting neck problems & wild T3 swings. I will be careful.

I see you went onto armour thyroid, I hope you continue doing well & losing weight too.

Thank you for sharing your journey on the hypo hell ride!

I am reading this and can relate to most of it at the moment.

I’m not having any hair grow back, awful crippling fatigue, brain fog. But weirdest thing is I have the chronic sinitus ( I had surgery a few months back) my sinuses were perfect. Then I started NDT and the flare up has been awful, I am getting nose bleeds, can’t breathe out of right sinuses at all. My asthma has got really bad, throat swollen. I am also getting loads of muscle aches and weakness. Have no energy.

I am on 1 grain. I posted my bloods in here the other day. I should be feeling a bit better now as tsh is down by 6. But my t4 is really low.

I do think NDT can cause a lot of histamine reactions due to the nature of the medication.

Jenny583 profile image
Jenny583 in reply to Ajva

Hi, Ajva, So sorry you are suffering all that heartache. We do seem to be in the same boat. It's hard to pinpoint which hidden snare is which.

Is it possible that the anaesthetic from your op could have triggered something?

I notice from reading your posts that you had/have similar iron & ferritin to me too.

My FT4 & FT3 shot up after I got my iron saturation % & ferritin in range. I recently read that low iron can cause 'pooling' in the blood, so that the T3 & T4 don't enter the cells as much as they otherwise might? also it is said that low cortisol can have the same effect.

Could all the physical & mental stress have lowered your cortisol & stomach acid?

I drank dilute apple cider vinegar with pate & took vitamin C & individual methelated B vitamins too, will have to remember to find the ACV again now!

My brain fog is bad right now. I forgot to put the fire on, & I have no hot water also my left nostril was bleeding so now I can't go out this morning (on my birthday) 😵😵 I forget now if you are able to tolerate anti-histamines, I've been on them for over 30 years! can't survive without them.

My asthma cough & ability to breath through nose improved a lot now after dose increase 2 weeks ago, now on 1 1/2 grains. I hope to be un-bed -bound soon, but may have to find a source of T3 to get there. How are you on T3?

Do you know what your vitamin levels & iron are right now? I would try & find a way of getting ferritin to a good level, as your high TSH suggests cellular resistance. I'm not a Dr, but I think that's the right terminology, if not someone will be along shortly to smack the back of my legs! I really hope you find the answer. I will be guinea pig in coming months...x

😁

Ajva profile image
Ajva in reply to Jenny583

Ah happy birthday. Well I do have POTs I was dignosed with it around the same time as the Dr noticed my thyroid was underactive. The pots causes a lot of stomach issues, circulation and extreme fatigue. So sometimes I don’t know what symptom is coming from what illness. It is the body aches for me that I find the worse. I feel like my energy is 0. I have improved slightly since being on meds but I feel some of the side effects are not helping. I am hoping to go up by 1/4 grain next week. I tend to go up slowly as my Heart rate is becoming a problem.

As pots affects heart rate the NDT makes my heart race. So the more I am taking the worse it seems to be. I may have no other option soon than to switch back to levo. I was on levo before but only for a few days as it kept making me faint as HR went sky high

Jenny583 profile image
Jenny583 in reply to Ajva

Thank you Ajva. Did you have the tilt test for your POT's?I had all the symptoms of POT's around 11 years ago. But all I got was huge amounts of propranolol & other BP meds & PPI's which made me anaemic & caused electrolyte imbalances. I couldn't hold anything down, so I just ate ginger, then introduced bananas, then kiwis. Couldn't tolerate anything else. Stayed on sustained release propranolol for a few years though as I had had heart flutter tachycardia & thyrotoxicosis when young.

My heart rate on present dose is over 100 at night, but it doesn't bother me, & could be from the low cortisol?

But 10 years ago I had pulsatile tinnitus & pounding heart which did bother me, couldn't sleep or lie down. But I wasn't taking any thyroid back then, I believed it was a drug that GP's had put me on for decades. I now know that drug was banned as causing heart failure, but is now prescribed for a different disease under it's generic

name.

When I stopped that drug around 11 years ago, my HR & BP went extremely low, but my dysbiosis continued until I gave gluten & dairy & sustained release propranolol.

But now I cannot afford gluten free or dairy free so....

I wish I had the answers to your POT's! I have forgotten everything I read about it, so will need to do a refresher. but it's definitely POT's?

I'm going up again by 1/4 grain next week, will have to dig out BP monitor though, as like you my HR goes up with increases of thyroid.

Ajva profile image
Ajva in reply to Jenny583

Yes deff pots. All the symptoms completely line up. I had a tilt test yes, I see a private cardiologist in london who specialises in pots as well. He said 100% is it. My HR jumps from 65 resting to 130/140 just standing. I don’t take beta blockers they make my blood pressure drop too low. I am on Ivabradine which is quite a new drug out but hard to get as only a cardiologist can persribe and Drs say it is really expensive.

Jenny583 profile image
Jenny583 in reply to Ajva

Aah, so you are a classic case. Hope the Ivabradine will help.

You may also like...