I’m just looking for advice, I’m on Levo (the worst drug on the planet) and my TSH is 0.33 (range 0.34-5.6), T4 is 17.2 (6.5-17). My docs get annoyed with me asking for T3, Ferritin etc but my T3 levels have always been on the higher end, Vit D, B12, ferritin and folate have always been on the low end. My question is, is it worth me trying NDT again to feel better and lose weight (I’ve now put on 3 stone since my total thyroidectomy 2 years ago) or add supplements with my levo, or supplements and NDT? Obviously my T4, T3 and TSH results are fine so I don’t want to rock the boat but sick of gaining weight, and it I’m not a massive eater, I don’t snack unless there’s a birthday in work or I’m at my Nans, I walk my dog etc just sick of looking at my bloated belly
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Jenna5
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Jenna after removing my thyroid and been on Levo for 9 years it was a nightmare. I’m on NDT 20 days and feel amazing. For the first time in 9 years I feel normal 🎉.levo felt like a slow death. Levo is synthetic firstly and only has T4. NDT is really Thyroid (animal) so it has T1,T2,T3,T4 our body is missing 1,2,3 that is why we feel crap... long team on Levo will cause bone problems please go back on NDT (NATRAL THYROID MEDICATIONS) I’m getting mine from Thyro-Gold NO PRECIPITATION NEEDED🎉
I had a total thyroidectomy 10 years ago and was on levo all this time. It has been impossible to lose weight and I have no energy. My older sisters both had TTs but their doctor's put them on a combo of levo and Cytomel. I have never been able to get a doctor to prescribe T3 for me. I'm from the US but living in the middle east right now and they don't even have TO here. I looked into ThyroGold, NutriMeds product and a few others and finally found a desiccated beef thyroid product called Natural Sources raw thyroid. It has great reviews and a lot of people living happily on it. I tried it for a month and felt fine. It was even during a really busy time for me and all was well. I then had some bloodwork done for other things and the doctor called me saying my TSH was over 100 (the lab doesn't report the number over 100). All of a sudden the symptoms started hitting me and I got back in the levo. I saw a naturopath and he said dessicated thyroid was a great option for people with a full it at least partial this remaining but because I had a TT I would most likely need to stay on at least some levo and take the raw thyroid as a supplement.
So I'm back on levo but just recently found and started taking some T3. So far my energy is much better. Too soon to see any weight loss though.
I'm really surprised and excited to hear ThyroGold is working so well with your TT. I know one of the reasons I hesitated to order it was I read the back story and I was worried the doctor's wife would stop manufacturing it all of a sudden for personal or natural (!) causes.
Please do let us know anymore info regarding your experience. I may reconsider trying it.
If levo and T3 combo seem to do okay with me... Is it really that bad to be on it? I keep hearing how bad it is for your bones, etc.
That’s really interesting, I was actually ok on NDT but I scared myself off taking it incase I was ever put in hospital for some reason and they didn’t know what I was taking. I’ve realised now there’s nothing to be scared off as long as I keep track of my blood work
I have my thyroid gland but on levothyroxine I was far more unwell when I was first diagnosed.
Researchers - (quite a few different ones) have found that people can improve on a T4/T3 combination. or NDT. With NDT, not being prescribed any longer by the NHS, neither T3. You'd have to source your own and be helped by members.
As you have already tried NDT but maybe need to find a reputable source, you/d have to put up a new post asking for a private message to be sent to you . In the meantime I will give you two links which may be helpful in your recovery.
As Advised by Rinajudge - Thyrogold was invented by an Adviser to Thyroiduk before his untimely death so that no prescription was required. His wife, Tammy, now deals with Thyrogold.
Hi, I will need to get my blood done. My doctors get really crappy when I ask them for vitamin testing. I’ve stopped seeing my endo, as I wasn’t happy with him or his attitude, he definitely wouldn’t send me for vitamin bloods. I will ring the doctors on Monday and sort something
Literally thousands on here forced to test privately
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If also on T3, or NDT make sure to take last dose 12 hours prior to test
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Come back with new post once you have results and ranges
Thanks for this, it’s so annoying that we have to go private. It’s very expensive. I have Graves’ disease (symptoms of which have not gone away) so do I still need antibodies tested?
Firstly, levo isn't a drug. It's a hormone. Secondly, if you think levo is bad, try some of the others - you don't have to get exotic to find something worse. A simple PPI will do, or a statin.
If levo doesn't 'work' for you, it's possibly because you can't convert very well. But, you'd have to have your FT4 and FT3 tested at the same time. And, as doctors don't know enough about thyroid to realise the necessity for testing it, most people get it done themselves - all wrong, I know, but unless we're prepared to chain ourselves to the railings outside number 10, we just have to get on with it.
There are many reasons for poor conversion, but one of them is low nutrients. If our nutrients are low, common sense would tell us we need to raise them - partly because they're necessary for our general health, partly because the body can't use thyroid hormone if they aren't optimal. Once again, you won't get much help - if any - from your doctors, so it's best to just bite the bullet and supplement ourselves. NDT certainly won't work for us if nutrients are low. So, if you're planning on self-treating with that, then see to your nutrients first.
Whilst NDT does contain T3 as well as T4, which is of great benefit for those that don't convert well, it's hardly likely that they contain T2 and T1. The thyroid makes such minuscule quantities - if any - that the chances of them surviving the making of the pill are minimal. T2 and T1 comes from conversion. T2 comes from conversion of both T3 and rT3, so you're bound to be able to make enough for your needs. T1 comes from conversion of T2.
The problem with NDT is that you are very unlikely to get it prescribed. So you would have to source it and buy it yourself, and probably self-treat. Doctors know even less about NDT than they do about levo. And, after all that, it might not even suit you - it doesn't suit everyone. But, worth a try, even so. But, first, you absolutely must optimise your nutrients. And, when you've done that, who knows! You might even find you get on better with levo.
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