underactive thyroid - can I come of meds or find alternative

[dosia]

Hello everybody - just found this site. Im 64 yr old female with underactive thyroid. Does anyone know how to lower or come of medication. I take 125 micrograms per day. Does anyone know of a substitute?

[shaws Administrator]

No, we cannot come off medication once we are diagnosed otherwise we can get other more serious diseases. Hypothyroidism is classed as 'serious' and if/when diagnosed we pay for no other prescribed medications.

If you can get a copy of your latest blood test results with the ranges and post them, members will advise on how best to feel better.

[dosia in reply to shaws]

Thank you. Ive been on it 20 years. Same dose for about 15. Dont feel too bad. Have heard of peoples thyroid gland 'healing itself'? Dont like being reliant on others for medication.

[Clutter in reply to dosia]

Dosia,

Thyroid rarely heals itself other than in patients with post partum thyroiditis or viral thyroiditis.

[dosia in reply to Clutter]

Thank you. One can only hope.

[Clutter]

Dosia,

Liothyronine (T3) and natural dessicated thyroid (NDT) are alternatives to Levothyroxine. You may have difficulty getting either prescribed on the NHS and may need to source them online. You will become very hypothyroid if you stop taking 125mcg Levothyroxine before you have set up an alternative to take. If you post your recent thyroid results and ranges members will advise about adding T3 to Levothyroxine or transitioning to NDT.

[dosia in reply to Clutter]

Thank you. Where does this natural dessicated thyroid come from. Is it from animals? Is it better in any way than taking Levythyroxine? It doesnt sound more accessible in emergency.

[Clutter in reply to dosia]

Dosia,

The T4 and T3 in NDT is from pig thyroid. It is better for some people but doesn't suit everyone. I don't understand what you mean about accessibility in emergency.

[dosia in reply to Clutter]

Well if you got stuck on a desert island after a plane crash or suchlike it would be nice to think that you could find some minerals or herbs to keep you alive. I

[Clutter in reply to dosia]

Well those of us with chronic conditions requiring daily medication had better avoid plane crashes and such like!

[dosia in reply to Clutter]

Ha Ha ..thanks anyway!

[greygoose in reply to dosia]

Minerals and herbs cannot replace hormones. Only hormones can replace hormones. And that's what levo is : a hormone. It does not repair the thyroid, or make it work properly, it just replaces the hormone the thyroid can no-longer make.

[shaws Administrator in reply to dosia]

Always make sure you have sufficient hormones on your person for any crisis which arise. I have a year's supply Of course, don't carry the total around but if I was going away from home, they'd be the first thing I'd take with me.

There is also another Natural Dessicated Thyroid hormone available without a prescription and is made from New Zealand grass fed cows. Dr Lowe invented it and he was an Adviser to Thyroiduk.org.uk before his early death. i.e. NDT contains all of the hormones our healthy gland would have produced.

naturalthyroidsolutions.com/

Also if you add some T3 (liothyronine - the Active thyroid hormone) to levo (sometimes the addition of a little T3 can make a huge difference) you might find a big benefit.

[Angel_of_the_North in reply to dosia]

Sadly, unless you found some animals on your desert island and ate their thyroid glands, you'd gradually decline, go into a coma and die (or go mad and then die). That's what used to happen to people before thyroid hormone was discovered - they'd be consigned to the mad house and then die.

[Helena877 in reply to Angel_of_the_North]

Wonder if there are any individuals that buy 'parts' from the slaughter house and make their own NDT....

[ThyroidThora in reply to Helena877]

Hi,

You cannot get thyroid glands from the slaughter house because it has been taken out of the food chain.

TT

[CarolineC57]

Hi dosia - just to add to what everyone has said above, the other thing to remember is that thyroid hormone replacement isn't really a *medicine*, it's actually replacing the hormone which our body doesn't/can't make. So, if you don't have a thyroid gland or it isn't functioning properly, you really need that hormone replacement.

[LizT10]

Hello

I was diagnosed with an underactive thyroid 18 months ago. I tried various doses of Levo which really made me feel worse and worse. In the end I decided to wean myself off it. Luckily I found a sympathetic endocrinologist who agreed with me doing this.

After a short break he suggested I try T3 instead. I lasted about six weeks on this but ended up feeling far worse than I did on nothing. I have now been on no medication since 8th September. Generally I feel much better. I do get tired and am not good at late nights but otherwise am very busy rushing around. Interestingly my TSH reading went down 5 points without medication. I am keen to continue without going back on to pills as the side effects far outweigh the benefits as far as I am concerned.

I hope you will find it encouraging to hear of someone who has come off medication and felt better. I am 62, still work three days a week, run two houses 100 miles apart, etc etc so do not sit around!.

Obviously don't come off medication without consulting your doctor but as we all know most UK doctors know absolutely nothing about treating thyroid problems.

Fingers crossed you will find someone who will really listen to you.

Good Luck

[silverfox7]

The only people I've heard coming off have had special circumstances. I don't know much about this but there is something that can happen because of pregnancy and then may right it's self later.

I did meet a physio last February who knew I had a thyroid problem. She had become hyperthyroid so was producing too much thyroxine but she was treated for that by taking Levo which stopped the symptoms and eventually she was able to wean off the Levo but was fully accepting that she may eventually have to do back and do that again. I've not seen her since so I have no idea how that it going.

So yes you may hear about people coming off but that is under very special circumstances and no guarantees for the future.

You may have a problem that if carefully managed you may be able to lower your dose a little. If you were not converting well from T4 to T3 then that can be help by taking supplements of vitamins and minerals so if that is the case and this worked well you may be able to lower your dose a little.

But basically not having medication you will quickly go downhill and into a coma.

Another poster has said she is off medication and is doing fine but I can't help but think that she may have gone hyper for whatever reason or that it's not been long enough for symptoms to return.

As someone else says you are only putting back into your body that which its struggling to do itself and I think, given the choice, we wails all be pleased to come off medication but we have to accept that for whatever reason we aren't working as well as we should be and so we need to continue and keep getting our bloods checked.

[Clutter in reply to silverfox7]

Silverfox,

Your physio friend would not have been prescribed Levothyroxine for hyperthyroidism unless it was in combination with Carbimazole to block thyroid hormone and replace with Levothyroxine (block and replace). Hyperthyroid patients are often weaned off block and replace after 12-18 months to try for remission.

Hypothyroid patients prescribed Levothyroxine generally have to continue taking it for life but there are a few exceptions.

[silverfox7]

Thanks for pointing that out clutter. Yes I wasnt very good explaining block and replace! Not having a good day either so things for rectifying for me.

[ThyroidThora]

Hi Dosia,

Thanks for following me.

I hope the messages below have answered your questions and I'm sorry for not replying before now, my laptop has been in the repair shop.

TT x