NDT or Synthroid UK

Hi all,

After my Total thyroidcetomy, I am on generic levothyroxine 200mcg. I feel dreadful and have put on 2 stone/10 kg in a few months. I'm tired all the time, depressed and have brain fog.

I recently spoke to my endocrinologist but he refuses any other treatment apart from Levo. He only reduced it to 150mcg on weekends.

Has anyone else been given anything different on the NHS? Im considering treating myself on thyroid-s/ armour or synthoid via the internet. Is anyone else doing this, if so, any advice?

7 Replies

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  • Not a good situation.

    I hope you realise that Synthroid is just a USA manufactured brand of levothyroxine?

    Armour Thyroid is the most expensive form of desiccated thyroid. Many people have switched from Armour to other makes simply because of the price. It would probably be sensible to choose a different make.

    Others with direct experience will, I hope, add their responses.

  • I commiserate with you and I did have my thyroid gland. You could add some T3 (liothyronine) to be added to your levothyroxine. It is recommended that the combined dose be at a rate of 3 to 1. T4/T3.

    If Endo is cruel enough to insist on levothyroxine alone he has absolutely no understanding how very unwell we can be. Has he taken your Free T4 and Free T3 and I think your T3 will be towards the bottom of the range instead of the top.

    We can live without T4 but we cannot live without T3. If we cannot convert T4 (levothyroxine = synthroid) to sufficient T3 we cannot get well as the T3 enters our receptor cells and we have billions.

    There is also natural dessicated thyroid hormones(NDT) the very hormones we were given before they introduced levothyroxine and the blood tests. We were prescribed upon our clinical symptoms alone and given NDT which contains all of the hormones our healthy gland would have produced i.e. T4, T3, T2, T1 and calcitonin.

    You can source your own thyroid hormones and sometimes we may have to try a few to find one that it is perfect and it might be the first choice made.

    When you have blood tests for thyroid hormones, it should be the very earliest and fasting although you can drink water. Also leave about 24 hours between your last dose and the test and take it afterwards. This allows the TSH to be at its highest as it drops throughout the day. Llinks which you will find helpful:

    hormonerestoration.com/Thyr...

    hormonerestoration.com/Docs...

    The link below is an archived site and some topics might not be available but quite a few are. Dr Lowe died through an accident.

    web.archive.org/web/2010103...

    web.archive.org/web/2010103...

  • Hello (((l levo78 ))) and welcome to this beautiful helpful forum.

    There are a couple of things springing to mind. First of all when did you last have your bloods done ? If you have the results, which you are entitled to have a copy of, post them here and wise members will comment with a view to helping. Now you have no thyroid, there may be a conversion problem, T4 is only any good for us if we can convert it to T3. Your vitamins and some minerals will need checking also.

    I am not medically qualified - I still have a thyroid, allegedly, but it is doing d*mn all at the moment as I have a condition which means my body is eating it up called Hashi's. I think the thing to do is look at all the helpful posts on here about your situation. You will find the search facility ( top right hand side ) and the Thyroidectomy button ( scroll down under Topics on the right hand side ) very helpful.

    Just a word of warning; I don;t know why your thyriodectomy was necessary but whatever your doctor told you, there is all too typically a very slow recovery from anything to do with the thyroid when it misbehaves. Please don't run at it like a bull at a gate and throw money at it ( as I was apt to do :( ) without consulting your fellow thyroidless ones on the forum and others. TPAUK is another wonderful resource and worthy of support if you possibly can with a donation hither and yon. There is more about the valuable work Thyroid UK does and lots more information for you, here

    thyroiduk.org.uk/tuk/

    Finally you may have to take your health in your own hands eventually, but it is early days, yet. Fight for your health and learn about your condition. Good luck :)

  • Levo78,

    Do you know what your TSH, FT4 and FT3 levels and ranges are? Thyroidless patients don't always convert sufficient T3 on Levothyroxine only and may do better with the addition of T3 or on NDT. It seems to be a postcode lottery as to whether you can be prescribed T3 on the NHS. NDT is rarely prescribed on NHS as it isn't licensed for UK use.

  • Thank you for your replies. My bloods are- tsh: 0.1, t4: 22.8 t3:3.3

    I had TT due to follicular cancer, a year ago. My levels have been up & down since then. I did better on T3 20mcg x 3 but they discontinued this and refuse to combine T3 with T4.

    Really annoyed with my endo, my GP listens to me but endo doesn't..Will look in to changing my consultant.

  • The admin of this site has a list of endos who are thyroid friendly and open to prescribing T3. Many endos specialise in diabetes and don't know much about thyroid.

    You don't give ranges for your test results, but your T3 looks low and your T4 is near the top of the range. Your TSH is probably below the range, so I can see why the endo doesn't want to give you more Thyroxine (T4). You can see why the T3 helped you, but I'm afraid it is down to cost - the NHS are charged astronomical amounts for T3.

    It does sound as though you would benefit from switching to NDT, but you will have to buy it in yourself. Thiroyd is probably cheapest, followed by Thyroid-S. Both of these are manufactured in Thailand. A couple of years back a 1000 pill tub of Thiroyd cost about £50 with shipping. You will probably need to take 2 or 3 pills a day (=2-3grains, or 2-3 x 60mg).

    When you take anything containing T3 your blood tests need to be read differently than when you take Levothyroxine. Your GP sounds like an enlightened one, so if you let him know you are taking something containing T3 it will probably help him interpret the lab results. Otherwise you may need to get blood tests done privately. May people use Blue Horizons for this because it's relatively cheap and can be done by post.

    If you do buy in NDT you will have to change over from Levothyroxine. There is a lot of advice on this forum about how to to this, so it's worth reading some posts.

  • I had my thyroid removed in 2013 and was put on levothyroxine. I rapidly put on 2 stone. Got very fed up with all the usual symptoms - tired lacking energy and found excercise hopeless with useless aching legs etc. Decided to change to Armour as my mother had done well on this for 30 years. I then in Oct 2015 had what they called a "cardiac event" which resulted in two stents inserted. My mistake was not to have blood tests whilst taking NDT. Did not know about BH tests. Lost 6 lbs though.

    Immediately put back on Levo 75 then 100 by Endo and told off about NDT. Put on another stone = 3 stone in all. Felt rubbish again, unsteady walking after midday. Lethargic and in pain for most of the day. Decided in Sept this year to return to Nature Throid because T3 not moving above 4 and to do my own tests privately. What a change!! Almost immediate. Have lost three pounds so far. Go for it. GP disapproves but is really interested but trying to hide this!!

    janveron

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