Help!

Hello, I'm new here, I found you all yesterday! I have been going to my GP for about 16 years with various symptoms, and during that time I have been diagnosed with ME, fibromyalgia, depression, Reynaud's phenomenon, low levels of vitamins D and B12. Eventually I was put on Levothyroxine, my symptoms improved but I still didn't feel great, so I took myself to a Metabolic Health Clinic and have recently been told to take NDT which I buy this from the USA. I have been taking this for about five weeks, I don't feel any better than when I was taking 50mcg Levothyroxine, in fact I have had the most awful headaches since taking NCT.

I have been reading the posts avidly, and today have discovered that I should be taking vitamin K2!! I feel frustrated, let down and angry that my GP who prescribed Adcal 4 years ago doesn't join the dots or give "extra information" so to speak, and why don't GPs seem to link these symptoms together and treat them as one bigger picture?

So, should I take vitamin K2, if so with MK? I have been told to take Adcal all year round, not just winter, despite the fact I spend a great deal of my time out side.

8 Replies

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  • MaryKt Did your GP test your calcium level before prescribing Adcal? Are you still taking it? Adcal contains a lot of calcium and a small amount of D3. If you are still being prescribed this and have not had your calcium level tested then ask your GP to do this. We only need to supplement calcium if we are deficient.

    You are (or have been) taking lots of calcium, plus the fact that D3 aids the absorption of calcium from food, and without K2 then that calcium won't be directed to where it is needed ie bones and teeth. It will be deposited in arteries and soft tissues.

    I posted recently about K2, it was to do with whether it should be taken with anticoagulants but the articles linked to are relevant. One quote was

    "What Else Is Vitamin K2 Good For?

    The health benefits of vitamin K2 go far beyond blood clotting, which is done by vitamin K1, and vitamin K2 also works synergistically with a number of other nutrients, including calcium and vitamin D. Its biological role is to help move calcium into the proper areas in your body, such as your bones and teeth. It also plays a role in removing calcium from areas where it shouldn't be, such as in your arteries and soft tissues."

    This is the post, look through the articles I linked to healthunlocked.com/thyroidu...

    What is your current level of Vit D? Members can suggest supplements and doses if you post your results. If your GP won't do it the you can get it done through City Assays vitamindtest.org.uk/vitamin... but you must discuss about the calcium with your GP.

    Also, when taking D3 we also need magnesium it is another co-factor along with K2 (it's the MK7 version usually recommended).

    NDT doesn't work for everyone but 5 weeks isn't really long enough to know. The Levo may not all be out of your system (that takes about 6 weeks) and the full effect of NDT won't be felt yet, plus you'd need to increase dose gradually until you find the right dose. Do you have thyroid test results to share so members can comment?

  • I will go and get some test done from my GP. When I was told to take NDT, I was advised to take 2 grains daily, having read lots of post yesterday, I now realised that I should have made the transition from Levo to NDT gradually. I wasn't given this info so just stopped Levo one day and took NDT the next. On reflection, this probably hasn't helped.

  • Did you test low for calcium - very, very low? If not, you should not be taking Adcal. It's a huge dose of calcium and very little vit D. It wouldn't help a sunburnt gnat! An taking calcium tablets is a very, very bad idea. You're probably now still low in vit D but have too high levels of calcium. You would do best to get your vit d tested asap, and buy your own higher dose vit D without the calcium. But, get some MK7 vit K2 to go with it. (MK7 is the type of vit K2, not something added.)

    Doctors know nothing - but nothing! - about nutrition. For them, food is just a bunch of calories that people over-indulge in - which is why they're always telling to cut down on it! They have a vague idea that we need vit D - although not which one - but, hey, that comes from the sun, doesn't it?!? As for B12, well, it's just a vitamin, isn't it. And everyone knows that vitamins are just things in jars in the supermarket that health nuts and hippies are always taking.

    So, never, ever discuss nutrition or diet with a doctor! And don't expect any real help from them when it comes to deficiencies.

    We, on the other hand, know how much you need these mere 'vitamins'. And, we suggest that if your vits D and B12 are low, everything else is probably low, too. So, ask for your folate and ferritin to be tested. Then we can start suggesting how you can supplement your way back to health.

    It would also be a good idea if you posted your thyroid labs and let us have a look at those, too. It sounds as if you're under-medicated. There is probably no reason why you shouldn't take NDT, just the prejudice of the doctor you saw. But, you probably aren't taking enough.

  • I will make an appointment to see a Doctor this week, my usual GP is useless, he has suggested that I need a psychologist not further tests! I will try and see a different doctor form the surgery and make a list of test you have suggested. The worst part of this whole sorry mess is that I fell like my health is not important to my GP, like so many others on this forum! Thank you.

  • You're welcome.

  • I have mentioned a survey which now found abstracted: mdedge.com/clinicalendocrin...

  • If you can not get GP to do these tests, ( or can't face the battle) then like many of us, you can get them done privately

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

    Blue Horizon - Thyroid plus eleven tests all these. £99

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

    Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) delay taking NDt in 12 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

    Do you have Hashimoto's? 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 the most common cause in UK of being hypo.

    (NHS rarely checks TPO and almost never checks TG. NHS believes it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.)

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

    You do not need to have ANY obvious gut issues, to still have poor absorption or gluten intolerance

    Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this.

    You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, leaky gut and gluten connection to autoimmune Hashimoto's (& Grave's) too.

    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.

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

  • Thank you. I know this might sound like me being thick, but, until I started looking into this yesterday I had no idea about almost anything that I have read on this forum! I have just started reading Dr. Peatfields book, I'm hoping that will give me even more insight. I think I will probably have blood tests done with the company you suggested, I really am tired of the constant battle with my GP. Will get tests done and post results.

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