V worried: Hi. After a long road, I found a... - Thyroid UK

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V worried

kittysmummy profile image
54 Replies

Hi. After a long road, I found a private GP who prescribed a very low starting dose of NDT. I felt a bit weird for a few days, dizzy, slight ache in chest, etc but as I upped dose after 2 weeks it improved. I have more energy & feel a bit better in the morning - but I'm very worried about the pain in my throat - my thyroid gland. Initially I thought it would subside with other effects of starting treatment but it's still there, as bad as tonsillitis (but in a different place). Has anyone else had this?

Prior to treatment I had relatively high RT3 ratio treated w raising iron, iodine, V12 etc.

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kittysmummy
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54 Replies
lindabcampbell profile image
lindabcampbell

i`am on amouri which is a natural and it works great my pharmacy changed the brand to N P because the insurance didn`t want to pay for it it was a new insurance i phone them and ask why they wouldn`t pay for it and then said this np is causing my throat to tighten up and it hard to breathe the next word the insurance guy said we are WE ARE GOING TO MAKE A EXCEPTION i`ve got my amouri back i never have a throat problem with amouri so .if i was to make a wild guess you need a different brand if it is brand name NP your thyroid will start shrinking and pull thats the feeling you might be feeling

all the syn like levo syth make me sick can`t breathe tight throat have terrible reaction

kittysmummy profile image
kittysmummy in reply to lindabcampbell

Thank you, very interesting! I'm on metavive, the only filler is rice flour & gelatine capsule.

leoopard profile image
leoopard

Please clarify did the high RT3 come with raising supplement doses? Or were the iron, iodine etc rising naturally?

Did the soreness big with the NDT?

kittysmummy profile image
kittysmummy in reply to leoopard

The sore throats started with the NDT - I stopped taking daily iodine after a month because I got a horrible taste in my mouth. I now take it as kelp and no taste but throats remains ouch.

leoopard profile image
leoopard in reply to kittysmummy

It sounds like you are reacting to the NDT. I would be inclined to try another brand. You'll also save some money, Armour is quite pricey. The fillers used to pad the tablets out sometimes cause issues.

kittysmummy profile image
kittysmummy in reply to leoopard

THanks - I'm not on armour, just metavive, as the filler is only rice flour and so it tends to produce fewer reactions. It is quite low dose though.

Clutter profile image
Clutter in reply to kittysmummy

Kittysmummy,

Kelp is high in iodine and may be inflaming your thyroid gland. Iodine can induce autoimmune thyroiditis (Hashimoto's). Iodine reduces T4 and T3 hormone levels and raises TSH which is why it has been given to hyperthyroid patients and why it is felt to be unsuitable for hypothyroid patients.

kittysmummy profile image
kittysmummy in reply to Clutter

Thanks Clutter - have stopped taking it a few days ago and will see what happens. I noticed that missing an afternoon dose of the metavive meant I woke up without a sore throat for the first time in weeks, so it's certainly my thyroid gland complaining. I'm now on two grains a day and will try raising in a week or two.

Clutter profile image
Clutter in reply to kittysmummy

Kittysmummy,

Metavive isn't the same as NDT so it will be confusing if you say you are taking 2 grains which contains 76mcg T4 and 18mcg T3 when you mean you are taking x mcg or mg of Metavive which has different proportions of T4 and T3.

kittysmummy profile image
kittysmummy in reply to Clutter

ah, ok thanks. I could ask him to prescribe something different (he did a private DHEA prescription at same time) but he felt this one would avoid most troublesome fillers. I've emailed him to say I'm uncertain it has enough T3 and that possibly too much T4.

Clutter profile image
Clutter in reply to kittysmummy

Kittysmummy,

You don't need a prescription for Metavive. google.co.uk/search?q=metav...

kittysmummy profile image
kittysmummy in reply to Clutter

Yes, I ordered that direct. Others here have suggested that Metavive isn't much cop and I should switch to a 'proper' NDT with higher T3. I am thinking I should have the DIO2 test to see if the conversion is part of the problem. I feel better than I did before, apart from the throat which is freaking me out quite a lot.

Clutter profile image
Clutter in reply to kittysmummy

Kittysmummy,

Why not have a thyroid function test? It will show whether you are optimally dosed on Metavive or under medicated. If TSH is low, FT4 is high in range and FT3 is low it indicates poor conversion.

kittysmummy profile image
kittysmummy in reply to Clutter

Will order one tonight via thyroid uk.

leoopard profile image
leoopard in reply to Clutter

Clutter are you referring to standard Iodine, or the radioactive Iodine used to reduce Thyroid mass?

Clutter profile image
Clutter in reply to leoopard

Leoopard,

Ordinary iodine. Radioactive iodine is only available via a nuclear physicist in a dept. of nuclear medicine.

leoopard profile image
leoopard in reply to Clutter

Thought as much hence the confusion. It's the radioactive stuff they use as an alternative to surgery.

Wiredtobetired profile image
Wiredtobetired

Hi Kittysmummy, I had exactly this until I reached my optimal dose of 3 grains. If I get ill or over do it I still get that pain in the front of my throat. Make sure your vitamin levels are optimal. B vits, iron, selenium etc. Check your adrenal function & that there are no other issues, I had underlying gut problems too. It's taken a while but I've never felt better. Hope you will too.

startagaingirl profile image
startagaingirl

Hi - i can't comment on NDT but just a different point, the role of iodine is contentious but it can actually make the situation worse by overstimulating a sick thyroid and hence burning it out faster. So unless you actually have a proven iodine deficiency, you really shouldn't supplement it. That could be causing or at least adding to the problem with your throat which is probably caused by an inflamed thyroid.

Gillian xx

Naomi8 profile image
Naomi8

Google the product you are on.It may be better to transfer to an NDT that is not available over the counter & is used by many on TUK & "Stop The Thyroid Madness"

Google iodine(including kelp) you may be causing issues with iodine.

Use the TUK search box to research Metavive & iodine.

helvella profile image
helvellaAdministratorThyroid UK in reply to Naomi8

Most people would not use the term "NDT" for desiccated thyroid products that do not have a known thyroid hormone content.

Metavive may have its place but we have no idea how much, if any, thyroid hormone it contains. Nor whether that content is consistent within a bottle - let alone across batches and years. To be fair, because we don't know, it might be perfectly consistent.

shaws profile image
shawsAdministrator

I'm sorry you have a very painful throat

I believe that taking iodine is contra-indicated when taking thyroid hormones as they contain iodine. It's just a thought.

BonnieT profile image
BonnieT

Make sure you drink a lot of water. Did you speak with your doctor about this?

kittysmummy profile image
kittysmummy in reply to BonnieT

I have sent an email Bonnie but you're right, I need more water

BonnieT profile image
BonnieT in reply to kittysmummy

I was only drinking two bottles of water a day. My doctor said more. I added a third. He said that wasn't enough add another. So I found Sparkling Ice, a 0% everything with a couple of good things added and it's flavored. My doctor ok'd it. I drink a half a bottle first thing in the morning with my Synthroid and wait an hour before eating or drinking anything to let the meds work better. In addition to water, I have coffee and tea throughout the day. It seems to help. I find I actually crave water throughout the day now.

BonnieT profile image
BonnieT in reply to BonnieT

I take my synthroid with plain water.

helvella profile image
helvellaAdministratorThyroid UK in reply to BonnieT

Sparkling Ice seems to have these ingredients:

Carbonated Water, Natural Flavors, Blackberry Juice Concentrate, Malic Acid, Potassium Benzoate (To Ensure Freshness), Sucralose, Green Tea Extract, Red #40, Biotin 1% Trit. (Maltodextrin), Niacinamide (B3), D-Calcium Pantothenate (B5), Vitamin B12 0.1% (Mannitol), Vitamin D3, Pyridoxine HCI (B6).

Not sure I'd want to consume any Sucralose at all.

I also think there is a big error in the B12 claim. It says 0.1% B12 - so a standard serving of about 120 ml would contain 0.12mL of B12. It then says it contains 10% of daily requirement of B12 - which is about 1.2 micrograms. As I see it, their claim is that it contains about 1000 times as much as is actually present.

If I have made a mistake in calculating that, please let me know.

sparklingice.com/product/bl...

BonnieT profile image
BonnieT in reply to helvella

I don't think the low amounts of anything in it can deter me from using it as my fourth bottle of water. It actually replaces the Diet Coke I used to drink which was much worse for me. I take B12 as a supplement so I know I get enough. :)

helvella profile image
helvellaAdministratorThyroid UK in reply to BonnieT

I wasn't criticising the low amounts. I was criticising the company's ability to be honest and accurate about their own product. Rather, I was pointing out their INABILITY to be honest and accurate.

Did your doctor OK your taking it within days of having a blood test? Or is he one of the many who do not realise that biotin (one of the ingredients) can interfere with quite a lot of blood tests giving misleading results?

I don't know how much you are drinking each day - but it sounds a lot. You do realise that excessive consumption of liquid can be damaging to health? Even to the extent of causing brain damage or death?

In hypothyroidism, the ability of the body to detoxify benzoic acid is markedly impaired. The product contains potassium benzoate - a salt of benzoic acid.

oup.silverchair-cdn.com/oup...

BonnieT profile image
BonnieT in reply to helvella

Hi! To clarify, I drink 3 bottles of water and one bottle of Sparkling Ice each day. In addition to thyroid, I have kidney stones and the water is to keep the kidneys flushed. I had one large stone that required surgery last year. I agree with you that the manufacturer of the Sparkling Ice should be more exact on how they post their ingredients.I did not know about biotin and bloodwork. Thank you for that info.

CSmithLadd profile image
CSmithLadd in reply to helvella

Here's what I've found:

The bottle label statement: "Vitamin B12 10%" is totally different than the next statement:

"Vitamin B12 0.1% (Mannitol)"

The second statement means 96% pure vitamin B12 tritrated onto Mannitol at 0.1% was used in the drink.

The drink contains 10% of the B12 (that was tritrated onto Mannitol at 0.1%).

Recommendation daily allowance for B12 is around 3.0 micrograms and the drink provides 10% of that RDA.

Hope this helps!

helvella profile image
helvellaAdministratorThyroid UK in reply to CSmithLadd

Except that typical daily requirement for B12 is quoted pretty much universally at around 3 micrograms - rather than 3 milligrams. :-)

I found the UK version made more sense

Vitamin B12

0.1875µg (7.5%NRV)

sparklingice.co.uk/product/...

CSmithLadd profile image
CSmithLadd in reply to helvella

Correction made. Thanks!

Vallillyann1 profile image
Vallillyann1

Hi

It's a long road to wellness & I am sorry you are experiencing this. Metavive is a weak NDT at only 15mg per capsule, so you are probably underdosed & you may respond better to a more recognised NDT. As others have said, you'll need to work on your vitamins, iron and cortisol too.

I wonder whether you have had your antibodies tested?

Good luck & with groups like this we have a great source

kittysmummy profile image
kittysmummy in reply to Vallillyann1

Thanks, my antibodies prior to supplements were about 15 (in range of 0-250). I know some think any tpoab are not good but I didn't think this level suggested Hashi's?

Stourie profile image
Stourie

Metavive comes in different strengths from 15 up to 65 mg. How much are you taking.? I bought it once and it didn't really do much for me, I can't even remember the strength I had.

Jo xx

kittysmummy profile image
kittysmummy in reply to Stourie

I'm taking metavive 3. I asked him how much it has in and he replied: Metavive 111 32.5mg contains 2.25 mcgm of T3, 16.5 mcgm of T4. I use it because it comes from New Zealand grass fed animals, is free of additives and lactose and it tends to be better tolerated than some of the alternatives.

I have only had a morning dose, no iodinenor kelp and lots of water. The pain is a bit less, which is great.

helvella profile image
helvellaAdministratorThyroid UK in reply to kittysmummy

Am just wondering, who is this "him" who told you?

For anyone who is interested, that works out as a 7.33:1 T4:T3 ratio (by weight).

kittysmummy profile image
kittysmummy in reply to helvella

My doctor, sorry

helvella profile image
helvellaAdministratorThyroid UK in reply to kittysmummy

Am even more confused! :-) How come you have a doctor who is prescribing an over-the-counter supplement?

And how come he has information about the thyroid hormone content of Metavive which is not readily available?

kittysmummy profile image
kittysmummy in reply to helvella

He is a private GP - I can DM you details - and I have no idea how he knows

kittysmummy profile image
kittysmummy in reply to helvella

Is that ratio ok?

helvella profile image
helvellaAdministratorThyroid UK in reply to kittysmummy

It is higher in T4 than standard desiccated thyroid but lower in T3. It was not that I thought the ratio wrong (the ideal ratio is likely to vary from one person to another), rather that it was something to note.

kittysmummy profile image
kittysmummy in reply to helvella

Just as a matter of interest - how many of them would be about 3 grains??

helvella profile image
helvellaAdministratorThyroid UK in reply to kittysmummy

Not certain I am answering what you asked!

32.5 milligrams is half a grain.

So six capsules would be three grains.

That would contain 99 micrograms of T4 plus 15.5 micrograms of T3.

kittysmummy profile image
kittysmummy in reply to helvella

That seems like a lot of T4! I will ask him about the sore throats, which is a definite response, and am currently on 1.5 grains, so will add another this week.

kittysmummy profile image
kittysmummy

I've ordered a thyroid uk check to see what my bloods are - Clutter do I take the metavive the day before or have 24 hours off? I'm not sure how long I can continue with this, my throats is so painful and I am anxious about it. No reply from my so-called doctor!! 😡😡

kittysmummy profile image
kittysmummy

Clutter and helvella i have had reply from doc!

"This could be due to inflammation in the thyroid sometimes caused by the proteins in the natural thyroid​. Can you ask your GP to arrange a blood test called CRP and an ultrasound scan of your thyroid gland

It might be better to take a smaller dose more often -say 1/2 gr 4 times daily-it may have a lesser effect if spread out more. If it persists we may have to switch you to a synthetic T4/T3 combination"

- I will call GP tomorrow but they do NOT know I've been self treating - so I have to say or just tell them about pain and ask for ultrasound? It will be a bit hard to explain won't it, if I don't tell them... confused. Heart rate about 95 but sitting in stressful situation :-/

kittysmummy profile image
kittysmummy in reply to kittysmummy

Up to 105 :(

Clutter profile image
Clutter in reply to kittysmummy

Kittysmummy,

Have you tried stopping Metavive to see whether the sore throat resolves? If the Metavive is causing the pain you should try another supplement or get a prescription for Levothyroxine or NDT.

You haven't been self treating, you said you are being treated by a private doctor. I think you should be honest with your GP and show GP the email from your private doctor.

helvella profile image
helvellaAdministratorThyroid UK in reply to Clutter

I agree with considering what a break does for your throat.

Although they might often not show much, I am very keen to see ultrasound scans done far more frequently than usual. They are not intrinsically expensive.

kittysmummy profile image
kittysmummy in reply to helvella

Thanks both. The discomfort resolves when I don't take the Metavive, so I might just say I want to swap.

kittysmummy profile image
kittysmummy in reply to Clutter

I am anxious that they will tell me to pee off - I have always been in normal ranges and my last NHS THs (gold standard!!) was 1.6 - the finger prick one was 4. I know it's stupid to worry about what they think but I don't want to say yup, I just ignored your advice completely...

kittysmummy profile image
kittysmummy

Just back from GP: outraged I went somewhere else and annoyed because their blood tests show my TSH is FINE... Anyway, she has ordered NEW blood tests next wednesday and won't send me to an endocrinologist until after they are back and we have discussed them. She said Placebo (surely some kind of thyroid patient bingo card game...) anyway. I have ordered the tests from Medicheck and will do them otmorrowo. Does anyone know where I could have a private ultrasound that doesn't cost a fortune? Spire have quote me £250 :(

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