Can anyone help?

Hi everyone, I haven't posted here before but you all seem so knowledgeable and friendly and I don't know what to do. I have been ill for over ten years and during that time have been diagnosed with chronic fatigue, IBS, BPPV but by and large have just been sent away. I started losing masses of hair in the summer so went back to my GP who finally tested my thyroid. The levels all came back normal and I was told I was fine just needed to get more sleep and lose some weight. (I was offered a shampoo for my hair!) I did some research and found that my levels were only just within their range (TSH 4.8 and T4 8.9) (ferritin 15) and that an awful lot of my problems seemed to be symptoms of hypothyroidism. I went back but he simply said I wasn't ill enough for him to treat or diagnose me. He said he thought I did have thyroid problems ( there is also a family history) but that he could do nothing about it. So I saw a private doctor who felt my thyroid (I have a large lump on my neck), did blood tests and diagnosed auto immune hypothyroidism with insulin resistance, oestrogen dominance and severely low levels of vitamin d and e among some other deficiencies. She prescribed levothyroxine and supplements. I started on 50g but didn't feel any better so she increased it to 100g and I started getting palpitations. Having read up on it I asked if she could change me to NDT and so she prescribed me ERFA thyroid which I have now been taking for about three months. (1 grain) I still don't feel any better at all but I do still get palpitations. She has said if I don't feel any better then stop taking the ERFA so I really don't know what to do and I'm desperate to start to feel well again. I have read that people change brands - does that really make a difference? I went back to my GP with the blood test results I had done privately and he refused to even look at them but did order an ultrasound because of the lump. That apparently showed both sides enlarged and nodular which he said was normal???!!! I feel like I'm stumbling around in the dark here and don't know what to do next. If anyone has read this far thank you so much and if anyone has any advice I would be so so grateful. Does anyone ever feel better with this horrid illness? Sorry for the long post - just really need some help and encouragement. X

14 Replies

  • Your ferritin is only 15 that alone can cause breathlessness and heart palps and means your body is totally unable to utilise levothyroxine or the t4 part of NDT

    You need to take betaine or pepsin or digestive enzymes to improve stomach acid

    Iron plus at least 2000mg vit c for many months to get ferritin up to halfway in its range usually 6 to 150

    If you have to get more NDT either order westhyroid or nature thyroid or thyroid-s

    ERFA is fine just try to keep taking it till you run out

    Its certainly much better than levothyroxine

  • Thank you so much. Do I need a prescription for those thyroid pills? I've only got two weeks worth left of my ERFA so I should really get ordering!

  • Welcome to the forum, KateLDB.

    Can you post your recent thyroid results and ranges (figures in brackets after results) and we'll see whether you are optimally medicated on 1 grain Erfa.

    If you'd like to post your vitamin and mineral results and say how much you are supplementing we'll take a look at those too.


    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • It was quite a big increase from 50 to 100, 100%, and you might be sensitive to the change. I would have tried something in between, 75 or even alternated that with the 50 to see if your body could tolerate that better and then do bloods after 6 weeks and take it from there.

  • Hi KateLDB, just a word of encouragement - yes it is definately possible to feel better!

    But it does seem to take time and fiddling around with meds to get type and dose right for many people.

  • Hi KateLDB - I too was diagnosed with chronic fatigue back in 2002 although I was lucky enough to get it into remission within 18 months (don't know how) but have had BPPV, IBS and all sorts diagnosed in the last 12 years. Getting my vitamin levels up to par while gradually find my way with self medicating NDT has sorted out BPPV and other (what I thought were) minor annoyances. IBS was sorted out with coming off PPIs and supplementing with Betaine. Everything else is now settling down and things are getting better.

    Take heart - it's never as quick a process to heal as we'd like it to be but it is possible and the folks on here will be there to support you while you're finding your way :)

  • Thanks everyone X

  • Your private doctor sounds very good. The forum admins have a list of helpful doctors - maybe she should be added to it.

    I hope you continue to improve and that you find a level of medication that works for you so that you can feel really well for once.

  • She is great - how do I go about adding her?

  • I think you send a private message to Louise Warvill

  • Ok will do.

  • I'm sorry, I Don't agree with that. She may have prescribed Erfa, but she's not very good leaving Kate on one grain for three months! Shows she doesn't understand very well how this works.

  • I'm starting to wonder whether I'm seeing the right person or not but there are so few options and i can't get anywhere at all with my NHS GP who said to me 'you are just one of those unfortunate people who are going to be ill'!!!!! greygoose I think you may have a point...

  • There are very very few doctors/endos/whatever that actually understand the thyroid : how it works, why it goes wrong, how to diagnos, how to treat. Which is why so many of us end up self-treating. We end up knowing more than the so-called 'specialists'!

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