A new year and a new me?

I hope so! Since stopping levo and starting NDT I have noticed gradual improvements. The joint pain actually reduced significantly only a couple of days after stopping the levo even though I was only taking 1 grain of NDT at that point. Gradually with each increase I have noticed further improvements. I feel more alert, more awake, I'm sleeping better and the brain-fog is now very much reduced; my brain doesn't stall in quite the same way any more unless I am really tired or stressed.

Last week (3 weeks into my 2 1/2 grain dose) I was starting to worry that the T4 was perhaps building up in my system again as my joints were stiffening and getting a little painful again. I increased my dose to 3 grains a few days ago, after checking my temperature regularly and determining it was still low, and after a couple of days I felt like my joints had been oiled! On one occasion I went to stand up after sitting on the sofa for an hour, expecting to be stiff and hurting, only to find that I could stand straight up with ease!

I still think I need a further increase or two, probably in another 3 or 4 weeks, but we shall see. For now I shall continue to take my temperature, BP and pulse and see if these are still off in 3 weeks time. If they are, I shall increase again and hopefully I will be nearly there.

Although I still have a little way to go, I am feeling so much better than I was this time last year. I gave levo a good go (several years), trying different doses, sorting out my adrenals, getting my vitamin and mineral levels up, taking glandulars etc, etc, but clearly it doesn't work for me even though it does eventually work well for most people.

If you are still not well, don't give up hope. Try to optimize your levo dose and sort out your adrenals and vitamins and minerals and, if this still doesn't work, investigate other options. There are doctors out there who are willing to help but they are sometimes difficult to find. Arm yourself with all the knowledge you can and you stand a much better chance of getting the help you need. Thanks to Thyroid UK, I am almost there and quite excited about the fact that I can potentially feel even better :)

Take care everyone

Carolyn x

24 Replies

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  • Hi, Its great to hear that you are doing well.

    What do you mean sort out your adrenals - how do you do that? and where do you get NDT from. My GP says he's never heard of it!

    All the best

    Alison x

  • Many people who have been hypo for a long time have "adrenal insufficiency" where their adrenals are not producing the right amount of cortisol at the right times. This can result in problems converting levo into T3, the active thyroid hormone, which can leave us feeling hypo even with normal blood test results.

    If you do a search for "adrenal insufficiency" or "adrenal fatigue" there is a lot of information about it and tips for recovery.

    I took Nutri Adrenal glandular supplement, magnesium and vitamin C as well as high doses of B vitamins and other vitamins and minerals. I also rested whenever I felt tired, went to bed early, avoided sugar and avoided stimulants such as caffeine and alcohol. I also tried to avoid stress. It took quite a long time but it was worth the effort.

    NDT is natural dessicated thyroid made from pig thyroid. One brand is called Armour and is the one that most people have heard of. It doesn't work for everyone though and many GPs won't prescribe it. Unfortunately the establishment appear to have interpreted "most people do well on levo" as "everyone does well on levo, you mustn't prescribe anything else".

    I hope that helps

    Carolyn x

  • Hi Alit, If you go to thyroiduk.org.uk/tuk/testin... you will find information about how to obtain an adrenal saliva test.

    Your doctor may well have never heard of NDT (explained beautifully by CarolynB)

    or of the saliva test so it may be worth your while contacting Thyroid UK and obtaining an information pack. thyroiduk.org

    Jane x

  • It is a wonderful feeling when you realise your medication is beginning to work in your favour and you do need to persevere - of course it would be more beneficial if our doctors were more aware of how unwell many of us are with the insistence that levo is the only product we can get prescribed.

    Wishing you a Healthy and Happy New Year.

  • And to you, too! :)

  • Such good news Carolyn!! I agree about the adrenals. I think getting them sorted out is key, but it's also important to know that unlike thyroid replacement they are not necessarily for ever!

    Just remember to be kind to yourself and don't overdo things in your enthusiasm! Jane x x

  • Thanks Jane. I forgot to mention about the adrenal supplements only being temporary. Thanks for pointing it out :)

    I've been quite good over the Christmas holidays getting lots of rest after a term of madness at work! I have been busy doing fun things instead, like origami and photography. Here's a picture of something I made last week

    flickr.com/photos/carolyns-...

    There is no way I would have been able to build something like that a few months ago. It is very exciting to have motivation, energy and brain-power at my disposal again :D

  • Thank you all. I will investigate the adrenals from the links and have ordered a book from Amazon. I can't sleep at night despite being tired so think it's the next step. I also feel exhausted quite often and the gp just wants to give me anti depressants (SSRI'S) - I don't think thats the answer and have refused them. I'm on 125mcg levo and FT3 is 5.8 (3.5-6.5) but am not feeling so good again after a few months of feeling wonderful. Uphill battle all the way I suspect. Ali x

  • That does sound like it might be an adrenal problem. Taking a magnesium supplement at night can help reduce night-time cortisol to help you sleep better (also known as the "tranquility mineral"). It certainly helped me. Magnesium citrate is more easily absorbed and less likely to cause any side-effects. Start on a low dose and work up. If you are one of the few people that don't tolerate magnesium tablets, you could try a bath with epsom salts. Magnesium is very easily absorbed through the skin.

    Napping in the day can also help if you feel tired. If you can't nap, rest with your feet up. I did a lot of this while I was recovering. I got through all 10 seasons of Friends and Stargate SG1 during my enforced rests :D Oh, and laughing is good for adrenals too so if you need an excuse to watch your favourite comedy, you have one right there :D

    I hope you start to feel better soon.

    Carolyn x

  • Golly gosh! A nap in the day - I do feel like having one or two a day sometimes, but I'll have to change my mindset to accept that. I will take your advice though on days when I'm not at work - it's great that you have found that you feel better from the combination of your self help treatments. How long did it take your adrenals to recover? I did have a cortisol test amongst others last year and the morning level was within range but at the low end. I'm not sure if that is good or if it should be higher in the morning. I'll start on my book as soon as it arrives. Ali x

  • Your morning cortisol should be at the higher end of the range so it does look like adrenals are an issue here.

    It did take a few months to recover but I did start to feel better quite quickly. I think just accepting that I needed to rest when I was tired was a huge breakthrough. Before, I used to just push through the tiredness and rely on caffeine to keep me going. I now know that these are two of the worst things to do and instead of a cup of tea or coffee I now have a large glass of water instead, or perhaps a little fruit juice.

    As an aside, I was on antidepressants for many years. Even though I was feeling much better when I last saw my psychiatrist, he said I would likely need them for the rest of my life as they believed the depression was mainly due to some brain damage I sustained when I was younger. I am now off antidepressants completely for the first time in years. I know the brain damage has caused me problems (epilepsy, for one) and I had come to accept that I would always need the antidepressants, so this is a huge deal for me. I just wanted to say that things do get better and keeping a positive mindset really does help.

    Wishing you all the best, and if you have any further questions please don't hesitate to ask :)

    Carolyn x

  • Brilliant Carolyn!.....and I've learned a new word too!

  • YAY for Carolyn's health getting better :D

  • :D My brain even works now! For once, I wasn't the one making the mistakes and forgetting the really easy stuff at karate last night. In fact I was able to help someone of a higher grade that had forgotten something! It was great to not be the one person who finished in a different stance to everyone else for a change :D

  • maybe the person who 'forgot something' needs some NDT too? ;) HAHAHAHA

  • So chuffed for you Carolyn, your blogs will help many people, we must never give up! :-)

  • :D

  • Nice post Carolyn and pleased that you've regained your health.

    It really does make a huge difference reading a positive post so thank you!

    Didn't know about magnesium but if it helps adrenals then got to be worth a try. Out of interest, should the magnesium be taken in the evening or at bedtime?

    I do hope you continue to do well.

  • I used to take it before bed. You could take it an hour or so earlier if you wanted to or needed to so that it doesn't interfere with other meds.

  • CarolynB, it is good to hear that you are progressing and continuing to improve. After 100 years of family history and 25 or so of my own, I sincerely doubt that most people do well on synthetic T4. Accurate statistics regarding anything thyroid, and perhaps many things endocrine, are almost impossible to achieve at this point. Not only are many testing methods flawed but so are many who are supposed to be qualified observers, e.g. doctors. The only statement we can accurately make is that it is up to the individual to take responsibilty and find out what works best in their body. This is what you have done and what many on TUK have done or are trying to do. We are the lucky ones, but I suspect we are still only a minority of the total thyroid patient population. I wish you continued improvement. PR

  • Thanks.

    I suspect you might be right. Although all the other people I know personally with hypothyroidism do very well with T4, I do wonder if perhaps they would be even better with NDT, but they say no; they feel just as well as before they were diagnosed. Perhaps they are just the lucky ones or have forgotten just how well they should feel.

    My father-in-law is one of those people. He is currently in hospital after surgery for a blocked coronary artery (again) but he says he is find on levo. He is 78 and remarkably fit for his age but he puts any tiredness down to his age. For any other 78 year old I would say it probably was his age, but for someone as active as he is I am not so sure. He walks several miles a day and eats a very healthy diet (mother-in-law won't let him eat anything unhealthy, for his own good!)

    Hopefully others who are not doing well on T4 will investigate the other options too. I think knowing that there are other options is half the battle :)

  • CarolynB

    thanks for the posting, I have just started armour after being on thyroxine for 20 years, so pleased its helped you, and feeling really positive that my health will improve I feel in control and 2013 is going too be a good year.

    kind regards

    karen

  • Thanks. I hope the Armour works well for you too. It's great to feel like a human being again :D

  • Great news Carolyn - hope the progress continues :) I too am feeling so much better, although my memory seems to be letting me down a bit at the moment. The hairdresser asked me the other day how long ago I had my highlights done and I had absolutely no idea :D

    Are you going to have any blood tests done (just out of interest - obviously symptom relief is more important :) ) ?xx

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