Ndt and Hashimotos

Does anybody here with Hashimoto's / Hypothyroid , fells ill when taking NDT ?! I am trying to figure out what happens with me with that. When taking it , it felt like my throat was being attacked, felt like having a increasing flue symptoms , tired , really unwell. So I stopped and those symptoms left and felt better . I tried then Nutri Thyroid , and the same happened , even though it says no hormones in it. I noticed that iodine also affects me in a similar way. I have been looking for some information about it with no lack so far.

I wonder if anyone here have some information on this regard,

Thanks

36 Replies

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  • Susi, a few Hashimoto's patients don't do well on NDT and prefer synthetic T4 and T3. Your problem may be with the brand you are using, some people have to try 2 or 3 different brands to find the one which suits.

  • Hello Susi,

    I am not an NDT user but have read if you can't raise NDT quickly enough, you are affectively creating a Hashi attack on your thyroid gland as NDT will stimulate it. This will raise antibody levels creating all the symptoms you experienced.

    The trick is to raise quickly in order to suppress the thyroid gland and prevent the Hashi attack but the stumbling block comes when ....either cortisol or iron levels are low as this appears to prevent you from doing so.

    Check out Stop The Thyroid Maddness websites...there is loads of info about mistakes people make when introducing NDT.

    If this applies to you, it would be wise to concentrate on repairing cortisol and iron before trying to medicate on NDT again.

    I haven't tried NDT as my cortisol is low.

    Flower.

  • Hello Ellismay,

    I again advise I have NOT used NDT myself as medicate on T4 & T3 so can only advise on what I read.

    The starting dose of NDT helps your body adjust to the T3 in NDT but if held for too long, can encourage a normal suppression of the feedback loop between the hypothalamus, pituitary and thyroid gland.

    This means that LESS messenger hormones are released making you even more hypothyroid than before you even started NDT. Less thyroid hormone will means a HIGHER TSH and HIGHER antibody levels giving more chance of a Hashi attack...

    The higher you raise NDT, the lower the TSH and less chance of antibodies raising. The T3 in NDT is an excellent immune modulator so will calm Hashimoto symptoms and attacks, as well.

    When on an optimal dose your TSH may be suppressed which many doctors do not understand, like or agree with.

    I agree that NDT is a hormone replacement that should be used with great care but raised as appropriate to each patients individual needs, decided by if they have Hashimotos, low iron, reduced cortisol levels or other health issues.

    Hope all goes well for you,

    Flower

    stopthethyroidmadness.com/m...

  • Not true in my case and I'd love to hear more people's experiences on this matter. My TSH is 0.02 and my FT4 is 13.9 after 12 weeks on NDT and my antibodies have rocketed from 150 to 485 having managed to bring them down pre NDT on a gluten free diet.

  • Do you fell well with NDT and high antibodies? I am also trying to figure it out since I felt increasingly sick with it.

  • Fatigue has returned, mood lower, eyebrows falling out, eczema flaring. I saw huge improvements in all my symptoms going gluten free pre NDT but still had afternoon slumps. The slumps disappeared on day 1 of NDT, which was fantastic, but I don't want the destruction of my thyroid gland to be the price I have to pay particularly since the slumps have now returned. I think I'm going to stop NDT and go on LDN and then possibly return to NDT if LDN reduces my antibodies.

  • I don't buy STTM's advice. I don't think raising quickly is a good thing. How many people have monitored their antibodies before and after and raised quickly on NDT? STTM tends to avert its eyes to NDT side effects. It claims that antibodies rise before they fall but give no time period. Is the fall due, as they claim, to an improvement in the immune system or as I suspect destruction of the gland?

  • I have Hashi's and I couldn't tolerate any form of NDT - and I tried them all except Thyroid S - nor Nutri Thyroid, and definately not iodine! And I think that goes for quite a few Hashi's people.

    And so then I get comments about 'well, it must have been your adrenals...' Nope. Started treating my adrenals with HC before starting the NDT. Was treating low iron, as well. But because people - including my doctor - insisted that it was the only was to go, and I must be doing something wrong, I stuck at it for about 4 years. Four years of my life wasted, and about 30 kilos packed on. I'm all for giving things a fair trial, but I should have had the sense to give up long before I did. lol But, I guess, I was so ill and brain-fogged that I couldn't think well enough to work it out for myself.

    Now, I'm perfectly happy on T3 only, and have lost most of the weight. How long have you been on it? Long enough to give it a fair trial? Then, perhaps it's time to try something else? T4+T3? T3 only? :)

  • Agree with you. NDT caused my antibodies to sky rocket after I'd brought them down going gluten free. Did you consider trying LDN?

  • Did I consider trying LDN? Ummm... yes. But chance would be a fine thing! Never met a doctor that's even heard of it.

  • Well I'm self medicating on NDT, so will no doubt have to self medicate on LDN!

  • Yes, good idea if you know where to get the LDN. I believe it's harder to get hold of than NDT - I'm self-medicating on T3 only. I'm not sure I would feel happy self-medicating on LDN, I Don't know enough about it. And I haven't yet come across a support group that encourages self-treating with it.

  • It's a minefield. Am still thrown by my antibody results, which I received 2 days ago. 12 months cutting out gluten, nightshades you name it, just for NDT to undo all the good I had achieved. I've been reading about T3 medication only and I think I'd prefer to have a T4/T3 combo as T4 is needed by the body as much as T3. My options are LDN and NDT (IF I am not intolerant to LDN), or a T4/T3 combo. This journey is relentless and soul destroying. What are your FT4 levels? x

  • My FT4 levels are probably zero by now. But I cannot tolerate any form of T4, and I can't convert it. I'm much, much better off without it. There are people like that. lol

    Not everybody can tolerate LDN, I know, one of the reasons I hesitate. But, basically, I'm up for anything.

    Cutting out gluten/nightshades/dairy/sugar did nothing for me. So, I went back to eating them, and Don't feel any worse for it.

    What I did have to do was address my nutritional deficiencies - which were numerous. So, with my T3, magnesium and B12, I feel I'm well set on the right road. Still room for improvement, though.

  • Susi, after 20 years on levothyroxine and not doing well, I switched to NDT with high hopes. I still didn't feel well. What a disappointment! Then I found an endo who put me on Levoxyl ((T4)brand only) and generic Cytomel (T3). Now I'm doing so much better. I wish you well.

  • Hello Ellismay,

    The ThyroidUK website is indeed a mind of information and extremely useful, and also supports this forum.

    ThyroidUK is part of HealthUnlocked (not the other way round) which provides the platform for many social networks regarding health.

    With over 500 patient advocacy organizations (PAG) on board, HealthUnlocked is the biggest network for advocates in the world, enabling them to offer a visible destination for anonymous and safe peer support.

    As you will probably already know if you explored ThyroidUK, you do not have to join the charity to benefit from this forum but by doing so you will be supporting the ThyroidUK charity. For other members benefit, I remind that membership also includes various discounts when buying supplements, as detailed in the link.

    thyroiduk.org.uk/tuk/treatm...

    Thank you for promoting our charity and your other interesting link. The NAH's explanation on the importance of iron and also travel protocol was worth book marking.

    Thank you

    Flower

  • Thank you ellismay

    F

  • Did you monitor your antibodies regularly before and after NDT? How else can you know what effect NDT had on them?

  • Hello MattyS,

    Your question is after my previous post so I assume you are directing at me even though I have previously already advised twice in this thread......

    .....{....I again advise I have NOT used NDT myself as medicate on T4 & T3 so can only advise on what I read.....}...

    If your question was directed at someone else..then please ignore.

    Flower

  • No, question wasn't directed at you was directed at EllisMay about being fine o Efra etc

  • Susi, for many years, I saw a doctor who claimed that patients with Hashimoto's disease should not take NDT, the reason being that their immune system will react to and subsequently attack the hormones in the NDT.

  • That's been my experience. Deeply disappointed to have to confirm it.

  • yes!! It made me puffier, heart racing, blood pressure up, sweaty on very little. Some people have antibodies to actual thyroid hormone and this causes an increase in autoimmune symptoms.

  • Is there a different test for this? Thanks

  • Why would you need a test for this? One of the huge issues is that doctors relay on test, not symptoms, allowing patients improper treatment.

    That being said, maybe you could get a blood drawl to see if antibodies have raised, but i really don't know what good it does. If ndt makes you feel sick, you don't take it. I tried it 3 times, wasted 2 years of my life. Took 8 months for the hyper symptoms to stop, after stopping ndt.

  • Thank you so much for the help. I was reading Dr Wenzt , and came across this , similar to some replies here:

    'In contrast, Dr. Alexander Haskell (author of “Hope for Hashimoto’s”) and Dr. Mark Starr (author of “Hypothyroidism Type II”), report that for some patients, natural thyroid formulations from animal thyroids, such as Armour®, may be perpetuating the autoimmune attack due to containing thyroglobulin and TPO, and they only recommend compounded and synthetic thyroid medications for people with Hashimoto’s . I have heard the same from multiple pharmacists and patients alike.

    If someone starts feeling worse after initially feeling better on desiccated thyroid or has an increase in TPO Antibodies after starting desiccated thyroid, switching to a compounded T4/T3 medication is advisable. '

    I was hoping NDT would work for me . for the fact it is natural, and also I could self medicate without the need to go through the stress of getting prescription. I am still learning and new at this but very glad to have come across this forum .

  • Hello Susi,

    I too would love to try NDT (hence my interest in it) but would proceed with caution (if ever) as like you, experienced a bad reaction to Nutri Thyroid and two other brands of glandular. My theory being if sensitive to glandulars, I am most likely to be sensitive to NDT.

    I read of many Hashi sufferers who DO well on NDT but consider ALL strategies and protocols have to be strictly adhered to and as we are all so biologically different, these would have enormous variations from person to person so how would we know..?? ...unless you are just lucky ...without expert guidance..??

    I presently medicate on T4 & T3 and am doing well.

    Hope you find your magic pill.

    Flower

  • I suspect that those who do most well have already seen such a destruction to their thyroid gland that they are not likely to react as much to NDT. But also very few people religiously monitor their antibodies, so it is difficult to get an accurate assessment of patient experience.

  • I experienced the same thing. I reduced my antibodies by going gluten free a full year before starting NDT and got them down from 600 to 150. 12 weeks into NDT and they have increased to 485. Unfortunately my antibodies are reacting to the pig thyroxine. Shortly after starting NDT I noticed that my sore throat had returned and my eyebrows started falling out. I'd recommend you get your antibodies tested and possibly consider LDN if you want to continue with NDT, or switch to levo and T3 combo. It's very frustrating that there is not enough information about this x

  • Would LDN work with NDT ? I think that could be an option . Do you know who prescribe it ?

  • Would have to monitor to know for sure. Some people are intolerant to it. Still looking into how to acquire it.

  • Matty,

    As advised above I don't medicate on NDT.

    I am sorry you have had this bad experience and you are right...there is not enough info out there but that is why we have this forum where we can all put our points across... of things we have experienced ..and what we have read in the hope it will help others.

    What do you plan to do now?

    Flower

  • I'm researching LDN. I may stop the NDT in a few days as I hate the idea that my thyroid is under attack. Hopefully my antibodies will then drop. I think my options are LDN and NDT or levo and T3 combo. There's a risk I could be intolerant to LDN because of my MTHFR mutation so if I do start LDN and NDT I will have to watch out for that. I believe that everyone should monitor their antibodies as standard

    x

  • Yes I agree. Although doctors do not recognise it..a high antibody count is so hugely destructive.

    F

  • As with only testing TSH, they miss a trick by not monitoring our antibodies. I was so pleased I had identified the majority of my triggers (food related) hence the improvement in my levels and my GP was so impressed by what I had achieved. I have no objection to NDT but I do think that STTM should perhaps be a bit more honest about the effects on Hashimotos sufferers. I know many people on Facebook who are symptomatic but because they don't monitor their levels they instead become frustrated thinking that their levo or NDT is not working, when in fact Hashi has to be treated separately.

  • for my hashimotos husband ,daughter,and granddaughters NDT has been the difference between enjoying life or living in hell on levo or T3

    I can only assume your

    Allergic to Pork

    Cannot convert the t4 in NDT

    It aggravates the antibodies

    your allergic to the fillers

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