Started NDT today after 15+ years on Thyroxine

I've been on Thyroxine for over 15 years (my current dose was 150mg), this morning my little parcel from Thailand arrived so I put my Thyroxine away and took half a grain of Thiroid, I'm going to take the other half soon. I'm doing this without my doctors knowing as I feel they just don't understand anything beyond the TSH result. I first thought about converting to NDT around 6 years ago, but then found out I was expecting our first little boy. I've spent the last 6 years either pregnant, breastfeeding or both so didn't feel it was the right time to mess around with my meds. My youngest has slept through for over a year, but I still feel rubbish so I feel it's time to spend a bit of time concentrating on getting me feeling better. I really hope the NDT works its magic and the aches and pains go and I get to sleep better soon.

11 Replies

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  • Good luck!

    Do you know how good your nutrients are - iron/ferritin, vitamin B12, vitamin D, and folate?

  • I don't I'm afraid, I've neglected myself over recent years due to being pulled in all directions by two little boys. I have taken Vitamin D daily for the last 6 years so I would assume I'm ok there, but don't have a clue regarding the others. Are these tests that GPs will readily do?

  • They differ. Some will and some won't. Ask, and see what happens. Doctors are so strapped for cash these days that they are reluctant to test for anything.

    But, if you haven't had your nutrients checked before, or haven't had them done for a long time, it isn't an unreasonable request, so ask.

    If the doctor says it is unnecessary and won't be budged from that point of view you could get privately tested if you can afford it. It currently costs £99 for a test including thyroid function testing, thyroid antibodies, and the nutrients I listed above. It is usually a finger prick test, unless you can get someone to take blood for you which would be great. It is from Blue Horizon and is called the Thyroid Check Plus Eleven test. It is all done by post and email.

    If paying for private testing is not an option the only other choice is to start asking the other GPs in your surgery, or to change surgeries - and there is no guarantee of success.

  • Thanks for the info, I'll definitely try and get tested at the docs when I next get my thyroid tested. If I don't have any luck, then I would consider the private testing. I'm also keen to get tested for adrenal fatigue, but I'm waiting to see the effect of the NDT first.

  • Please don't assume your vitamin D is OK.

    The level of supplements they tell people to take presumes they can make vitamin D through their skin, there is enough sun from April to the end of September and there is enough sun in the summer to make this additional vitamin D.

    They ignore the fact that due to the skin cancer scare they have convinced everyone wear sun screen and any sunscreen stops people making vitamin d. Plus most people now spend long periods of time indoors.

    I've also learnt on this forum that some areas think that a vitamin D level of 50nmol/L is adequate while in the area I am the level is 75nmol/L. However neither of them are optimal as the level you should be at is 100nmol/L minimum in summer. That way when your vitamin D level falls in winter it won't fall to a deficiency level.

  • Thanks for the info, I'll make sure I get tested for Vitamin D next time I get bloods done, whether it be via the GP or private.

  • You can swap straight over to the equivalent dose rather than waste a few weeks of your life getting there. Unless you have a heart condition 😀. My GP told me to swap straight over but I played safe and truly regret it I too have little people to deal with so it wasn't fun so after a week I switched fully

  • Oh goodness, I'm so glad to see your post Jodypody! I was about to come and ask exactly that question. Youngest woke me at 4.30, oldest has been sick over night (partner dealt with him thankfully) but I felt just awful at 4.30 and took my morning half grain early. Thankfully partner got up with the kids and I've been able to get some more sleep :-) I was on 150mg of thyroxine so how many grains do you think I should start with?

  • Look up the equivalent chart. It's 60 per grain so 2.5 is my guess I don't bother splitting the dose either too much faff

  • Thanks Jodypody. I've had 2.5 grains today spaced 4 hourly apart, I'm happy to space them out while my body gets used to the change.

    I commented on a Facebook post on a Thyroid page earlier this evening about how I'd taken 1 grain yesterday and 2.5 today and got well and truly told that it was a bad idea and that I'd feel more unwell as a result further down the line. I'm so confused as to what to do for the best!!!

  • As others have suggested, ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones to work in our cells.

    Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's - most common cause of being hypo. NHS rarely checks TPO and almost never checks TG.

    Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results.

    Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online, but all should be doing this with couple of years.

    When you get results suggest you make a new post on here and members can offer advise on any vitamin supplements needed

    If you can not get GP to do these tests, as suggested, then like many of us, you can get them done privately

    thyroiduk.org.uk/tuk/testin...

    Blue Horizon - Thyroid plus eleven tests all these.

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

    Insomnia seems to be a common side affect of thyroid issues

    If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

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