Flu, swollen lymph nodes back of neck, raging headache, dizziness & fast pulse - Hashimoto's & all since trying to switch to NDT! Help!

Hi, hoping someone can give me some advice on all of the above I've been experiencing for almost 2 weeks now...

So after a year of on/off anxiety, depression, dizziness, weight issues etc I was finally diagnosed with Hashimoto's in March. Then put on levo, which I took for 2.5 months before deciding to switch to WP thyroid after reading STTM and educating myself almost 12 days ago now.

I followed the protocol by splitting 1 grain in half for am & pm but almost instantly started to feel unwell in myself. Weak, dizzy, insomnia, headaches (the worst!) which then turned into a full blown flu. Very sensitive ears, painful painful headaches (especially at the base of the neck & up the back) sinuses completely blocked, on/off fever, sneezing, stomach going mental, decreased apetite, fatigue, fuzzy feeling all throughout body (especially in chest & toes) tight chest, vertigo, insomnia due to feeling so weird when resting... All this got dramatically worse over a few days so in a panic I didn't take the NDT and took the levo again for a day in the hope of feel better - nope

After reading more of the NDT switch online with the help of other advocates - I decided to try NDT again but on a loser dose. After a couple more days I braved 1/2 grain and within an hr I had took myself to A&E. They gave me an iv drip as my pulse was very fast. All bloods came back normal but TSH was down to 0.1 to which the doctor said I'm taking too much NDT & that I should go back to see my endo to discuss dosages to avoid a 'thyroid storm'. I've now been taking 1/4 grain everyday for 4 days but my endo saw the blood results and said everything was fine! I demanded an appointment with him as I do not feel fine in the slightest - something is not right.

Tonight I cannot sleep due to weird sensations and anxiety type feelings so I'm reaching out of anyone can relate maybe?

I've been trying to follow the AIP diet but finding difficult, although I've lost weight finally from removing gluten and grains (as much as possible)

Stomach goes crazy most nights but I'm wondering if that's because I'm eating something my body is intolerant to?

I've got a full thyroid panel, b12 & full iron blood test done today. Vitamin d is good and drinking acv & taking digestive enzymes with ox bile to get digest foods/nutrients. I tested negative to h.pylori & EPV.

I've also discovered small but painful lumps on the back of my neck which I thought were spots but I think they're swollen lymph nodes. I'm scared I have lymes disease. This is something I want to talk to the endo about.

I want to try to raise my NDT as I've been on a very low dose for almost 12 days now and that could be contributing to hypo symptoms but with how rubbish I've felt/still feeling, I'm scared it's going to send my body into overdrive! 😁

15 Replies

  • A couple of things. You have to remove gluten. Not a bit, totally. NDT can't give you flu it's a virus as I'm sure you know so it's coincidental. Being hypo will give you anxiety so it sounds like you're a bit wound up. If you're in a state of panic about taking NDT it could be psychosomatic? I'm not trying to insult your intelligence by the way I just understand what anxiety can do to you.

  • Hello, I'm so sorry that you are suffering these horrible symptoms, and that you are having such problems with your thyroid replacement. The medical response to your situation is all too familiar to me!!! You mention Lyme Disease and this was the first thing that sprang to mind when I started reading your post. However, the NHS test is VERY unreliable, and it would be better if you were tested privately through a German or USA lab. The NHS test rarely picks up the chronic form of Lyme Disease and can give false negative results. We had my daughter tested privately after 20+ years of misdiagnoses, and incorrectly following the thyroid route for 12 years. Her thyroid problems were caused by infections (including Lyme Disease) that had affected all areas of her body and had also given her many of the symptoms that you mention. You may still need to take thyroid replacement for some time to support your thyroid function, and perhaps would do better on T3 (since you may have conversion problems) but that would be for an expert doctor to determine. I will gladly send you information on how we finally found an informed doctor (in the USA) who could help and begin my daughter's recovery. PM me if you are interested. Jane x

  • How much Levothyroxine were you taking? Did you feel well on that?

  • Started on 50mcg then up to 75mcg. My anxiety and heart palps went but I was still tired, irritable, gaining weight, muscle aches, constipation etc which is why I couldn't get on the NDT quick enough! Even though not feeling great

  • Just to reassure you, the doctor at the hospital was talking rubbish. A TSH of 0.1 does not mean you are over-medicated. It doesn't mean anything at all, by itself. You need to have your FT3 tested to see if you are over-medicated. TSH and FT4 are bound to be low when on any form of T3. So, he shouldn't have immediately jumped to the conclusion that your problems were due to over-medication, he should have looked further.

    I had the same problem in hospital. I know inside of me that my illness wasn't due to my thyroid, but once they saw my suppressed TSH, they refused to consider anything else - even though they were giving me anitibiotics... since when does over-dosing on thyroid hormone require antibiotics??? :)

  • This blog really helped me. I experienced something sumsr when switching over.


    Also you can arrange for a phone call with Jane at STTM. This was helpful for me but I did not feel better till I slowing increased my dose. 1/2 grain every 10 days. But once you hit 1 1/2 grains go slow. It can take 4 weeks on the same dose to really feel it kick in. But again you may be on too low.

  • ndt made me horribly ill..with flu, racing heart, sweating and weight gain, high bp and glucose..just an inflamed, ill mess on ndt. Tried it 3 times, because i read that i would not feel well without it.

  • Could it be something in the fillers that you don't like? Just to check. Hour before your dose then take and antihistamine and see if that makes a different. If you feel ok with that then you need a NDT with different fillers

  • No I don't believe it's the fillers as it only contains inulin, porcine thyroid & mct from coconuts.

    I'm now supplementing iron & vitamin c along with holy basil for high cortisol at night but I'm currently experiencing terrible pounding heart whenever resting, weird popping and gurgling sensation in my my stomach, thumps of the heart now and then and real bad air hunger. What is going on??!? Help!

    I've raised my NDT to 0.75 today & took 3 holy basil but something is not liking this?! I was told I shouldn't raise my NDT above 1-1.5 grains until I sort out adrenals and iron issues but I am going out of mind with worry and confusion as to what the hell my body needs.

    Also, the lump on the back of my neck has got considerably bigger 😣

    I've no endo now as he's refusing to see me because I'm taking NDT and it takes over a week to get a GP app in my practice. This is all too stressful. I think it's getting better then bam!! More hideous symptoms 😩

  • I have started coming out in big reaction spots after taking thiroyd NDT and it also did give me flu like symptoms for the first week but then it evened out. Could it be that you are maybe having an allergic reaction to the fillers used?

  • As I mentioned in the last post, WP thyroid only has 3 filler. Inulin, lactose & mct from coconuts. This is why I chose it so I can't see that being the problem??

  • Sorry I didn't read all the other replies. Just the main bit and then replied. It is very bizare as NDT is usually milder. You mention cutting out grains in your diet. Sometime people with intolerance to grains and gluten also have an intolerance to lactose.

  • Well I'm not 100% sure what my intolerances are tbh. I'm trying to follow the autoimmune paleo diet due to having Hashi's and gut issues so I'm trying to be completely gluten & grain free but it's unbelievably strict and sometimes I end up eating nuts or dairy. I used to eat cheese without any problems but I have a feeling nuts aren't great for me and I've been eating paleo & naked bars (with cashews & almonds in) so I'll be strict with nuts and see if that makes s difference. Does it sound like food intolerances then?

  • the last 3/4 days i've had internal trembling and racing heartrate all throughout the night and now today i am feeling it :( i've been on 1/2 grain in the am and another 1/4 asround 3pm and been taking holy basil in the afternoon & eve for high cortisol during this time. anyone had the same taking HB? my throat is closing up and i have awful air hunger and most of the day with tender and gurgling stomach. i'm really unsure what to do - try to increase my dose to 1 grain as it could be undermedicated or ease back off it even more and add T3 as i have adrenal and iron issues. any advice?

  • so i had a much better nights sleep where the palps and buzzing chest calmed down enough to fall asleep at a sensible time but was woken up at 5.30am with stomach cramping and dizziness :/ ive taken 1/4 grain this morning and my throat feels like it's closing up even more, difficulty breathin, instense dizzy spells, really bad stomach pain under the left ribcage wheich ive had before a few weeks ago which the GI specialist said i was severely constipated - however i've been to the toilet every day for a week now i think? would completely coming off NDT for a while do more damage than good?

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