Vitamin D and Endocrinologist - I'm speechless!

I have been struggling with autoimmune thyroiditis for 6 years and am currently on 150mcg a day of Eltroxin. I was feeling so unwell that, in the end, I went to see a private endocrinologist. My vitamin D level is 29.7 (<30) - tested by doctor, and so the endo gave me 6 days of 50,000 iu Cholecalciferol and then one a month of that strength for 6 months. I was just beginning to feel the benefit when it was day 4, and of course stopped at day 6 (last week) and now feel worse again.

Interestingly, I emailed the endo and asked for his thoughts about what I should do now I felt unwell again and I received the reply today:

These are his exact words "I would be happy to see you before (10 April) but your vitamin D will be okay now and I am not sure I can explain this. I would hope that the benefit will come back. If you want we can see you earlier than a month." He hasn't even asked me to get my vitamin D level checked.

I am speechless! I cannot believe I am paying this man so much money and he can't explain why I'm not feeling well after stopping all Vitamin D after 6 days! Consequently I have arranged to have a vitamin D test done on Thursday at the doctors.

Would love to hear any commets/suggestions.

Best wishes

Kathy

21 Replies

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  • The whole vitamin D thing is a 'relatively new' subject and I doubt many endos really have much idea about it. If you're not one of the people who reacts well to their 'standard dosing protocol', they're flumoxed. :(

  • So it would seem!

    Kathy

  • You know, it is not impossible that he is being more literal than you think. He might mean that he really does not think he can explain it (regardless of who he is talking to), but his experience is such that he has every reason to be confident.

    Not saying that is right - but it is possible to see a different interpretation of those words from the one that you took - quite understandably.

  • Yes I see your point. I will go ahead and get the blood test done though. Thanks for your comments.

  • I am probably wrong! But I know how many times I have seen things that appear to make no sense or whatever - and a re-reading on another puts another light on it.

    By the way, I hadn't realised that you had replied. If you click on the blue "Reply to this" the person you are responding to gets an alert email. Which can be important if you are expecting any further response from them! :-)

  • I would like to offer you a possible explanation, having had the same experience of feeling better while taking high doses of vit d, and feeling much worse a week or so later.

    People noticed that many people with autoimmune illness also had vitamin D deficiency. They had no idea what the relationship between the illness and the deficiency was, but felt it was a good idea to supplement and correct this deficiency.

    Some recent research has suggested that the body might be switching off its ability to make or store vitamin to try to protect itself from the impact of the illness somehow.

    When your blood tests come back, I think you will find your vit D is in the normal range and you are no longer deficient. If that is the case, then your experience and my experience support the notion that vitamin D supplementation, particularly in high doses, can make your immune condition worse.

    This paper suggests that feeling better initially is down to the anti-inflammatory effects of the vit D, but that can only last for a few days. I've copied some references below:

    eurekalert.org/pub_releases... (easy read summary)

    autoimmunityresearch.org/tr... (original paper)

    my feeling worse after was reflected in a massive 25% increase in T3&4 at that month's blood test (I have Graves Disease so that showed I was iller), which has since been coming down (my condition is not controlled by medication, so those changes are down to my internal state and what I'm doing), so it was interesting for me to note what happened, and I would never take large doses of vit D again. I stopped taking it all together, and am debating with myself whether to take a small dose and see what happens or not.

  • maybe you could email the paper to the endo? it would be interesting to hear what he thinks about it

  • Hi SamBonjela,

    Doubt the Endo would take much notice. The second paper is co-written by Trevor Marshall who promotes the 'Marshall Protocol'. He is not a medical doctor and there is much controversy regarding his theories.

    Regards Joan

  • I don't know anything about the Marshall Protocol but will check it out. A lot of medical research is not done by doctors but by academics who have specialised in research methods, unlike doctors who don't have the time to develop that knowledge, so I wouldn't dismiss any research based on it not being conducted by a medical doctor.

    I was warned about vit D by a friend who has coeliacs and some thyroid problems. She developed cysts in her thyroid and now has a thyroid full of holes and felt that this could have been as a result of her vitamin D intake.

    My personal experience was that taking large doses of vitamin resulted in an immediate and noticeable improvement in how I was feeling. This only lasted for a short period of time, and within a month of taking these big doses everyday, my graves was the worse it has ever been. A month later, the blood results show that it is improving, although it is still not to the level it was before starting the vit D. I have no way to know if the vit D caused the worsening of my symptoms, it may be something else, or just the natural behaviour of the illness.

    It seemed like a no-brainer to me that if I was deficient in vit D, then correcting that deficiency had to be a good thing. Now I'm not so sure and I think it's worth warning people that vit D may aggravate their condition, so at least they can keep aware of their internal state and draw their own conclusions.

  • This is very interesting - thank you. Do you know how long the vitamin D takes to get out of the body and will the body then get back to 'normal'? At the moment I am on T4 only and the Endo decided to give me this big dose of vitamin D with a view (I hope) to giving me T3 when I next see him. Maybe T3 is what my body needs as my T3 is lowish and my T4 highish.

    Best wishes

    Kathy

  • Hi I would make sue that my calcium is still in range. Out of range calcium can be very dangerous but also may produce many side effects.It does not sound like this to me, but best to be sure. I hope you soon feel better.

    Best wishes,

    Jackie

  • You apparently need vitamin K2 to metabolise vitamin D properly, otherwise you can start storing calcium in your tissues. Take a look at the Dr Mercola website. He is very good on vitamin D.

  • This is interesting - My endo has advised my GP to prescribe me vitamin D 800 iu (fultium D3) ; this has now been confirmed for 12 months. She had first told me to buy my own and then found the BNF had added them to their prescription list..

    However I was feeling awful whilst finishing off some self bought over the counter Vit D tablets and went to a homeopath who checked out my meds and said the Vit D was interfering with my other supplements. I called Dr P who advised me to take them at different times as I would definitely need the D.

    Am feeling much better with this regime:-

    T3 20mcg 5:30am

    NAX x 1 NA x2 at 8:00am

    Vit D (fultium)and B 12 midmorning with buttered toast ( Vit D is fat soluble and am on a low fat diet apart from this)

    T3 10mcg at 11:30ish

    T3 5mcg at 16:30 ish

    Vit C and Ferrous gluconate with evening meal.

    The change could be the timings or the type of Vit D - fultium is a capsule with "oil" in ?? and the over the counter one was tableted form.

    Not quite there yet but on the way up I think. Still testing

    I am also enjoying a daylight lamp not sure if it helps the Vit D but I love the light it gives great for my knitting too. Had hoped to put it away on 21st March but it seems the clouds are still here - roll on Spring.

    Good luck with your results.

  • i was diagnosed with negligible level of Vit D as a result of breaking my leg for no clear reason! I also was put on a high dose of vit D -100,000iu give in one off dose monthly for three months then onto the standard vit D3 800iu per day. I found that I gradually went downhill after a month of stopping the last high dose of Vit D3 and all my symptoms of fatigue, poor restorative sleep and aching bones returned. In the end I decide to bring my Vit D3 up to the Vitamin D Councils recommended level of 5000iu per day. Made a big difference but took a couple of months to feel better on.....still take that level (don't tolerate any sun due to a skin condition) and have been fine ever since.

    It could be simply that your 800iu per day is an insufficient maintenance dose.

    My Vitamin D3 is in an oil capsule form -have had no problems with absorbing it. I don't take any vitamin K2 -on the basis that you only need a very very small quatity and I eat a varied diet so hopefully my K2 needs are provided for -and seem to be ok without adding this in. I take my vit D3 capsule with my vit B's at breakfast time -with a very small glass of orange juice.

  • agree 800 IU is way too lo esp.in winter..healthspan amongst others make a very good vit D3 as well as swanson the chemist ones are lacking on most scores

  • consider thinking about ones iodine level--as this has a major impact on ones thyroid as well as selenium and iron & good ole vit c is never to be forgotten-timed release is optimal & a good multi mineral & a separate multi vitamin.. unfortunately foods in shops have lost much of their nutrients in storage and most soils are depleted of goodness, smoking drinking pollution etc. exacerbate our nutrient depletions supplements in these 'modern' times are a necessity the WHO has interesting studies on lo iodine levels esp.in the UK the research has all been done for us.. the NHS follows rda's that are inadequate in the best of times & when not up to par our systems need a little help.. natural nutrients are better than synthetic and sans sugar, fillers, etc.etc.

  • This is entirely speculative K and amounts basically to my flying a kite - but drawing on the above I guess that if a very generalised view of supplements is taken it might be fair to conclude that we should never need to supplement vitamins and the like at very high levels. In that our system is presumably set up to function based on normal dietary intake levels of the various nutrients.

    That's not to say that as a result of illness or problems of one sort or another that it may not be necessary (because of a short term acute problem) to do so.

    It seems quite likely though that in many cases we might do better to (a) seek to resolve the underlying cause of the deficiency, and (b) allow the body the body to restore correct levels on its own.

    The instinctive reaction to a low level is no doubt to top it up. Depending on the nutrient in question that may cause no problem (the body may just use what it can and dump the rest), but it's equally possible i guess that very high levels may trigger unintended consequences.

    The devil is always in the detail, meaning that the answer to questions like this is perhaps inevitably going to be 'it depends..........'

    ian

  • Generally i would have agreed with you Ian. However it is now a known fact that our fresh food contains over 40% less nutrients that it did to way back in the 1940's. this is no doubt due to long storage and the quantities that are produced repeatedly in the soil -and the fact that strains of veg/fruit/grain have been produced for their quantity, looks, resistance to disease and not their content of nutrients. Therefore it can be difficult these days to allow the body to just 'naturally restore' it's own levels of needs.

    Where vit d is concerned it is a known fact that in the northern hemisphere many people are lacking in this nutrient and cannot get sufficient amount via our sun -either because we are not outside enough with enough flesh exposed without suntan lotion on at the right time of the year or there is not enough sunshine of sufficient strength to propagate vit D on our skin.

    in the past I have been very skeptical of all the supplements -seeing them as nothing more than big business playing on people's fears. however my own ill health has shown me this is not entirely true. E.g since taking b12 and b complex vitamins my nails have grown and become strong for the first time ever in my life! And i am absorbing my thyroid hormone better so need less of it and gernally feel better with far more energy.

    I hope you don't mind me commenting -of course these are only my views....but the evidence does seem to be mounting that we all need to take a good quality supplement and cannot now purely rely on fresh veg and fruit and protein to provide all.....sadly.

    The alternative would be for the government to put pressure on food growers/manufactuers to produce food that provides minimum requirements of vitamins and minerals....and for sellers of food to ensue that their storage does not cause a loss of vits and minerals to dip below a specified level. .Now that would be interesting! :)

  • I have been on Vit D supplements as prescribed by GP after him being contacted by endo to say that my Vit D level was only 47. I am supposed to take a 'short course' of 6 months!!!

    10 weeks of taking them daily, and I dont feel any better :(

    Ann xxx

  • how much are you taking daily?

  • I didn't intend to push any particular line Wavey. ;) Only to suggest that high dose supplementation is probably not a normal state of affairs, and as such is probably more relevant in more acute situations.

    I'd be the first to agree that deficient produce as a result of intensive farming and over use of fertilisers is a problem, but if supplements are the answer to that it's likely that it wouldn't be routinely be at very high dosages.

    The thought that the system might mandate the supplementation of foods gives me a bad feeling. It may be a valid approach, but I don't have much faith in the ability of science/medicine to optimise dose levels or form (especially not when it's a one size fits all deal), or that the industry can be trusted not to cut corners and otherwise manipulate the situation for profit...

    ian

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