Aaaargh. Wits end

Hi all. I'm at my wit's end! From diagnosis with hypo thyroid I have suffered constantly with awful side effects on firstly levo and later ndt. I couldn't tolerate more than 25 mcg levo and didnt feel great on that. Got an endo to prescribe NDT and managed to get to 1 3/4 tablets (slowly - and blood test result perfect) then the side effects started. Over heating, stiff neck, pain in left hand back, the list goes on. I'd try my best to tolerate but it would get worse so eventually I'd reduce by 1/4 tablet. I'd have a few days, maybe a week, where I wouldn't have side effects then they'd start again. I'd try and bear it, ultimately couldn't, drop another 1/4 and on it's gone. I couldn't hear the pain at the top of my neck last week and the feeling that my neck was stiff and elephant sized I'm now on 1/4 tablet. Neck is still not back to normal and praying that will happen as I can't take any less!! Anyone had similar experiences? I don't seem to tolerate anything very well. I tried armour and that was awful. Naturethroid I'm taking. I'm at my wit's end and just don't know what else to do or why this is happening to me. Everyone seems to be able to find something they can tolerate without side effects - except me !! Haven't seen the endo for months and last time he just to!d me to try every ndt brand to see which one is best and seems convinced I won't like t3 for reasons I'm not sure I understand. Has anyone else experienced failing with levo and ndt but t3 was ok ?

Thx for any help. Xx

15 Replies

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  • Poor you!! I don't know a great deal about this kind of situation, but it does seem that the common denominator of Levo and NDT is T4! I'm improving on T3 only, as I could see that T4 levels were not the issue.

    What were your blood results when you started and when you re-tested after NDT?

    X

  • Thx. I'm in the middle of moving and packed all the blood test results away and can't locate them. But I did post them at the time the endo said they were perfect and everyone who commented and they were right. I haven't been released blood tested for ages and I only dropped to 1/4 today. I agree t4 is the common denominator but endo doesn't seem to think that way. 😂

  • Olsbird From this thread healthunlocked.com/thyroidu... and on NDT

    Tsh 0.02 (0.30-5.00)

    T4 15.5 (12.00-22.00)

    T3 5.5 (3.20-6.80)

    And from this thread healthunlocked.com/thyroidu... on 50mcg Levo

    Tsh 2.8 (.270-4.20)

    T4 12.56 (12-22)

    T3 3.6 (3.1-6.8)

    Folate 14.8 (4.6-18.7)

    Ferritin 8.8 (13-150)

    B12 686 (191-663)

    Vit d 26.5

    Did you optimise your vitamins and minerals? What are your current levels?

  • I get a bit tired that folk think vital (for life) minerals are some sort of wash out - just 'cos docs say so.... & also pretty fed up of repeating it after 7 years xx

  • soz... bit tired & grumpy... happenz x

  • Yes I got my bit d and ferritin up but I haven't retested for a while. Realise they're important but the side effects have been horrid at all times so I'm really not convinced that the missing link is this. But thx. Xx

  • They may not be the missing link in this, but for any thyroid hormone to work they must be maintained at optimal levels. Are you continuing with maintenance doses? It would be a good idea to see where your levels lie now.

  • If you search for 'wit's end' here it must have a postcode!

    I too am on NDT (Naturethroid)- not the magic cure I'd hoped for either... but stable & closer than others. Levo just made me hurt, T3 panic attacks - I would suggest you check other stuff - like Vit D, B12 & folate, ferrtin/iron & adrenals (alien to me). Hope to give you hope x

  • Thx.

  • ..what Spareribs said :)

    Also, have a read of the worldly wisdom of Barry Durrant-Peatfield, if you haven't done so already.

  • Yes, me. I tried T4 only - wasn't too good - T4+T3 - a bit better - NDT - that was THE worst! Then, T3 only, and I was finally able to return to being a human being!

  • Wow. At last!! Someone I may relate to!! Did you resolve yourself or with Dr help? I feel like I'm banging my head on a wall.... Did you have horrible side effects ?

  • I didn't get any help from doctors! The doctor that put me on NDT, insisted it was THE only way to go, and that I should persist, despite how ill I was becoming. I was just very, generally ill, put on a ton of weight and became practically bed-bound.

  • Thanks greygoose. My endo said to try every brand of ndt to see which suits me best but having tried 2 I'm not sure I see the point of the other 3 brands. And it cost me a fortune! It was 370 for 100 tablet of armour. Took half and felt so I'll the other 99 are in the cupboard !

  • I tried several, can't remember which, now, but definitely Armour, and a couple of others. But, Armour has gone up so much in price, now, it's rediculous!

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