Thyroid-S not working: Hi, I've been taking... - Thyroid UK

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Thyroid-S not working

Jackie101
Jackie101

Hi, I've been taking Thyroid -S since March, and am currently taking 3.5 grains a day. I do not feel better on this. I also take B12, Vit D, and an Iron & iodine tincture my herbalist gave me. My average body temp is 36.

A blood test taken last week has my Dr worried that I am over medicated. My heart beat is 90 when it's usually around 80 at rest. I can't afford the US NDT, so feel a bit hopeless. My Dr has been useless and does not listen. She wants me to go back on Levo - as the safest thing.

20 Replies
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shaws
shawsAdministrator

Levo isn't the safest thing but the best we've got in the UK, although some doctors can prescribe for a 'named patient' basis NDT. They wont though as looking after themselves in case the patient has an adverse affect.

How were you taking Thyroid-S (i.e. splitting or one daily dose). You are taking around the equivalence of 350mcg of levothyroxine so wonder if you reduced dose slightly whether you might benefit. For info this is a link of how best to use NDT.

web.archive.org/web/2010112...

Jackie101
Jackie101
in reply to shaws

Thanks very much for the info. I do find all the conflicting information somewhat confusing! For eg,in one post on here, somene was saying they were on 8 grains a day! So I thought being on 3 at that time wasnt enough - hey ho..

shaws
shawsAdministrator
in reply to Jackie101

Some get confused as NDT is usually measured in grains or mg not mcgs as levo, so are unaware they may take larger doses than with levo.

Say for instance someone was taking 100mcg levo daily and wanted to swop to NDT then they could take an equivalent dose of NDT , i.e. 1gr or 60mg/65mcg which is around 100 levo (some might find it feels like a lower dose but that doesn't matter). After two weeks you increase by 1/4 tablet and so on until symptom free.

Blood tests are only a 'guide' they cannot inform us how the patient is 'feeling'. Sometimes in desperation we may increase more than our body can cope with. We have to allow a for gradual increases.

We all vary in our requirement and some people do need 8 grs but other might only be 1 or 1.5.

To try to get to a dose which makes us feel well is like a minefield and we don't quite know what to expect or when we will reach a level when we feel well.

I myself went through several combinations and alternatives to levo but, finally, am fine now.

I hope you are successful soon. i.e. do you take one daily dose or split doses?

Jackie101
Jackie101
in reply to shaws

Hi, thanks again. At the moment, I take it in the morning 1 hour before breakfast in one dose. Am I better off taking it in 2 doses?

Jackie101
Jackie101
in reply to Jackie101

I feel better for reducing the amount.

shaws
shawsAdministrator
in reply to Jackie101

If you feel better stay on that dose for the minimum of two weeks. Then review your symptoms.

Jackie101
Jackie101
in reply to shaws

Hi - I'm not doing well on 2 grains - v v tired. Should I increase by half a grain or a whole grain, and how long should I stay on it? Thanks

shaws
shawsAdministrator
in reply to Jackie101

when we start taking NDT we usually switch over from an equivalent dose of levo.

However, as you are on 2 grains you can increase by 1/4 about every one or two weeks until you are symptom free. Take your pulse/temp as guides as well, if either goes too high drop to previous dose. I'll also give you a link which might be helpful:

Jackie101
Jackie101
in reply to shaws

Thankyou I've been reading up that 1 grain of Thyroid S is equivalent to 75-100mg of Levo, I was on 150 mg of Levo before switching. How long should I stay on a higher dose - just keep testing temp etc?

Er you didn't attach link..

shaws
shawsAdministrator
in reply to Jackie101

Sorry, here it is:-

web.archive.org/web/2010112...

Yes. you are right. It is thought that ThyroidS is around 75 to 100mcg of levo.

The particular dose doesn't really matter - it is how we 'feel' on a particular dose.

I just increased my dose until I felt well. If I felt too hot and took temp it was normal so kept to the same dose.

A dose is an individual amount which removes symptoms and makes the patient feel well.

When you feel well with no clinical symptoms just stay on that dose.

If symptoms return you should have a blood test. I only get a yearly test nowadays.

Have you got any blood test results to share with us? Bit difficult to give advice without them, as we would just be guessing.

Did you get your iodine tested before taking the tincture? That is the problem with getting advice from people like herbalists, they think that all you need to do for a thyroid problem, is throw iodine at it! They do not realise the damage that can do. You are already getting a mighty dose of iodine from your 3.5 grains of NDT. I very much doubt you need more on top. You are probably way over the top on iodine.

Jackie101
Jackie101
in reply to greygoose

Hi Greygoose, Thanks for the information, the tincture also contains iron. I have been having headaches - which I don;t usually suffer from. I haven't got the details from the blood test - but it was just a test for thyroid - not other things. will try to get a copy next week.

greygoose
greygoose
in reply to Jackie101

Well, you'd be better off getting yourself some ordinary iron without the iodine, you don't want anymore iodine. And you should get your iron tested before taking any, too. Too much iron can also be toxic. You really should not just take things because people in shops recommend them.

Jackie101
Jackie101
in reply to greygoose

With respect, I don't listen to people in shops. The last time I had a blood test done my iron levels were ok -according to my Dr, who I don't trust anymore. Where do you get your authority from?

greygoose
greygoose
in reply to Jackie101

No authority at all. But it's not a good idea to take things you don't need - been there, done that, got the bad health to prove it. If you don't believe your doctor when he said your iron was good, why not post the result here, and people will tell you.

But, taking iodine just isn't a good idea at all - even if you're iodine deficient, that should be done under the care of a doctor who knows about iodine - I doubt a herbalist does. Iodine, in large quantities, is dangerous. And you will already be getting a hefty dose from your 3.5 grains of NDT.

And if I say these things it's because I'm concerned about the effect they will have on you. No other reason. But if my concern doesn't interest you, then you are - of course - free to do as you wish. But my conscience would not be clear if I did not at least try to give you the benefit of my past - detrimental - experience. :)

Jackie101
Jackie101
in reply to greygoose

Thankyou for your concern. :) For me I think, the difficulty is finding what I do need. My brain fog ensures that I don't take information in very well anyway..

On here the TSH test is totally discredited, but as we know Dr's swear by it.. The article someone posted above as a link is very good!

greygoose
greygoose
in reply to Jackie101

To find out what you do need, you do tests : blood, saliva or urine. :)

Is your doctor simply reacting to a suppressed TSH result? That doesn't necessarily mean you're on too much NDT. What tests were done, do you know? If you have them to hand or can get them we'd be happy to interpret them.

Fast heart rates can actually be caused by under treatment as well as over treatment.

I agree with Grey Goose about the iodine - I don't think you need it. The iron - possibly.

Jackie101
Jackie101
in reply to Jazzw

Hi Jazzw, My Dr just tested for Thyroid - not other stuff. I asked if she could test for T3, but I don't she didn't agree. She said that my TSH result was dangerously high, and felt that I was at risk of heart failure! My heart rate didn't feel right at all. Since reading these posts I've dropped down to 2 grains, but will go back to 3. My Dr wants to go back on Levo, so she can repeat the same crap I've had for the last 9 years..

What's the difference between iron and ferratin?

with thanks

greygoose
greygoose
in reply to Jackie101

If your TSH was high, then she should be increasing your dose, not reducing it. And, even if it were low, there's nothing dangerous about a low TSH, that's just claptrap. The TSH is irrelevant once you're on thyroid hormone replacement, and if you're on any form of T3, the only number to look at is the FT3. Certainly not the TSH, because that's bound to be suppressed on any form of T3.

Ferritin is your stored iron, the iron test tests what's in your blood.

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