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Hello. I live in the U.K and had been asking for a Vitamin D test for over a year. They finally agreed and my level came back as 8. !! My Doctor has said I cannot be put on a higher dose of Vit D because I am on diuretics…..and a higher dose would risk hypocalcaemia. My health has been deteriorating in the last year. Absolutely no energy, lethargy and ectopic heartbeats. Would these symptoms be associated with such a low level of Vit D ?Also, how are patients on diuretics and needing high doses of Vit D usually treated ?Thank you.

Asked by  taurito71102600 on February 22, 2017

  •  taurito71102600 on

    See title

    Answered by  taurito71102600 on
  •  IAW on

    Do you take one of these “thiazide diuretics such as hydrochlorothiazide or bendroflumethiazide”? If so then I can provide more information. If it is not one of those, please give me the name of it.
    Yes, low vitamin D can cause those symptoms. Did you translate your level from nmol/l to ng/ml or was that the level you were given?

    Answered by  IAW on
    •  taurito71102600 on

      Thank you for replying IAW. I am on a diuretic called Moduretic. It contains 50mg of Hydrochlorothiazide and 5 mg of Aamiloride Hydrochloride.
      My vitamin D level was given to me as 8 nmol/L.
      To add to the confusion I have Hashimotos (diagnosed about 30 years ago) and I am on Levothyroxine. I was fine until about 18 months ago and then everything went down hill….including ectopic heartbeats ! Now I have absolutely no energy, my brain is “foggy”, it is an effort to do anything and I have no interest in anything. My doctors have tried to persuade me to take antidepressants but I have refused as I know I am not normally a depressive personality.
      Any advice you can give me would be very welcome.

      Answered by  taurito71102600 on
  •  IAW on

    In your original question you said “and a higher dose would risk hypocalcaemia”. I think you understood wrong and he is worried about “Hyper”calcemia.
    It was once thought that taking thiazide diuretics would cause hypercalcemia. A study came out, though, that showed in “most” cases it does not. If anyone did show hypercalcemia, “they believed they already had it before taking the Vitamin D.” They also stated that those who tested positive for hypercalcemia “did not have symptoms”. This last statement is important because there is a difference between hypercalcemia with symptoms and without. http://www.ncbi.nlm.nih.gov/pubmed/24657333. Has anyone taken a blood test for calcium levels and do you know what the level is?
    You are “extremely low” in Vitamin D. You are in the osteomalacia range. You never said what they consider “high dosage” and what they are allowing you to take?
    Low Vitamin D is linked to autoimmune disease like what you have. Is your thyroid TSH level the same as it was when you felt OK?
    After answering the above questions, I can give you a better idea how to proceed! That may be either arguing with your doctor or on your own.

    Answered by  IAW on
    •  taurito71102600 on

      Thank you for getting back to me so quickly.Yes you are right …I meant “Hyper” calcemia….not “Hypo”. I have a result for my calciumas follows :
      Serum Calcium 246 mmol/L
      Calcium Adjusted Level…..2.51 (range 2.20 – 2.60 ). This blood test was done in January 2017….and I was told this is normal. At this point the lab had refused to test my Vitamin D as they said I did not meet their criteria. I would not accept this and my Vit D was finally done in February. I had read up on supplements for such a low result …an example being 20000 iud twice weekly for 8 weeks. I think my GP may have been on the point of prescribing this dose until he got a warning on his screen about my being on diuretics. He therefore prescribed me 1000iu (25mcg) D3…one tablet per day.
      As regards my TSH it is higher at the moment than I think it should be. (4.32 range 0.35 – 5.50 )). It was down at 0.5 In May 2016….but they said I was overmedicated and reduced my Levothyroxine to 100mgs even though my T3 was still in range. TSH been climbing since then. I had had a lowish TSH in the past. I was working full time in quite a stressful profession but felt fine at that time. It is since retiring actually that I seem to have gone down hill…and am getting progressively worse.! There may be a time correlation too between being told about 2 years ago to stay out of the direct sun as they diagnosed solar keratosis. Mind you I have never been a sun-bunny lying for hours in the sun.
      I just wish I could fine out what is going on….I want my energy….and my life back. Sorry to moan !!

      Answered by  taurito71102600 on
  •  IAW on

    Let me first say “Good for You” for being persistent on the Vitamin D test.
    If they reduced you to 100mcgs what were you taking before that? Do you have any results from a FT4 or FT3 test? Your TSH is too high. In order to feel well you need to be below 2.0. Your bottom end of the range is 0.35 and you were at 0.5 (?) that is what you said above. They should have left you a lone and not changed anything!!! (Sorry I am a hypo patient too.)
    Do you take any other medications? How long have you been taking the 1000iu?
    Just so you know I am not a doctor. Your calcium levels were fine when last taken. So you can go back to the doctor and take the study above or here is our blog post at https://www.vitamindcouncil.org/is-it-safe-to-take-near-physiological-doses-of-vitamin-d-while-using-anti-hypertensive-medication/. (You might have to be a member to access it.) Then you can argue for more Vitamin D. If it makes him feel better he could do a follow-up calcium test at some point. Even if it goes “over the range” it still does not mean you cannot take Vitamin D. It is only if you start to “get symptoms” of hypercalcemia.
    The symptoms of hypercalcemia include: feeling sick or being sick, poor appetite or loss of appetite, feeling very thirsty, passing urine often, constipation or diarrhea, abdominal pain, muscle weakness or pain, feeling confused, feeling tired and bone pain.
    Your symptoms of “absolutely no energy, my brain is “foggy”, it is an effort to do anything and I have no interest in anything.” All sound like low thyroid but low vitamin d, “in a round about way” can cause this too.
    If you are not having any issues (new symptoms) taking the 1000iu, then I do not think you will have problems taking more. Keep this in mind. Once you start giving your body enough Vitamin D and it starts repairing itself, you may not need or need less blood pressure medicine. That would go for any drugs you are taking.
    We try and promote taking Vitamin D on a daily basis because it is better for you. Standard doctor protocol is usually 50,000iu once a week for 8 weeks which equals about 8000iu a day. You are so low you should take 10,000 iu a day. Since you already do not feel well maybe you should start with 5000 iu once a day for a week and see how that goes. If you do not add any new symptoms then go to 10,000 iu a day. If at “any point” you develop a new symptom or an old one gets worse, then it is probably a mineral deficiency and you should come back and tell me right away. (This is why I think you should do 5000 iu for a week.)
    This is important reading at http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-and-other-vitamins-and-minerals/.
    You said “There may be a time correlation too between being told about 2 years ago to stay out of the direct sun as they diagnosed solar keratosis.” Yes, there absolutely was!
    More questions, just ask!

    Answered by  IAW on
    •  taurito71102600 on

      These are my thyroid test results dating back to May 2016


      TSH 4.32 ( 0.35 – 5.50 ).

      T4 13 ( 7.00 – 17 pmol/L )

      T3 4.5 ( 3.50 – 6.50 ).

      In May 2016 my TSH was 0.5, T4 was 19.2, and T3 was 5.7. Was told I was overmedicated and levothyroxine cut back to 100mgs from 125.

      In September 2016 my TSH was 1.82. T4 was 12.9, T3 was 4.8.

      In October 2016 my TSH had been 1.05 ( lab didn’t do T3 or T4 ).

      In answer to your question the only other medication I take is the moduretic. I started taking the 1000iu Vitamin D tablet 4 days ago.
      I took an extra 25 mgs levothyroxine last night (have started taking it at bedtime because I understand it is best taken away from food, on an empty stomach.
      I will be trying to access the links you have kindly provided for me. Had no success on the Tablet so will try again on the main computer.
      I don’t suppose you know how long it should take for me to feel any benefit from having started taking Vitamin D…even at such a low dose.?
      Thank you again.

      Answered by  taurito71102600 on
  •  IAW on

    I find it very interesting that they cut back on your thyroid dosage in May 2016, that your TSH levels did then not look unreasonable in Sept and Oct 2016 and then all of a sudden you are at 4.32. So I think the rise in the TSH just might be more to do with the lack of Vitamin D at this point. You may want to not take the extra 25 and wait it out to see what happens by the end of two months after taking Vitamin D.
    Let me also say that a study was just released recently that shows taking Vitamin D “reduced thyroid auto antibody levels”.
    You asked “how long it should take for me to feel any benefit”? If you are going to take the 5 and then 10,000iu a day that I suggested above, then I would hope you would start to see some improvement in several weeks. If you see no improvement in a month, come back and tell me. If this is the plan then in two months you need to retest and see what your level is. If the doctor will not retest, then you can buy a test kit from the VDC but I also think you can get one in the UK. For the first time since I have been answering questions, I am going to “stress the fact” that “you” really need to retest. Once you do, you should come back and tell me what level you have and how you feel. This will help decide what your maintenance dosage should be for the future.
    If you are sticking to the 1000iu, it is not going to help much.

    Answered by  IAW on
    •  taurito71102600 on

      I think my initial thoughts on my “rising “TSH were as a result of the lower dose of Levothyroxine. I was also helpfully told on the Thyroid Health Unlocked site that people can actually require a higher dose over the Winter months, and the same with Vitamin D.
      I agree with you , that by all accounts, I need a higher dose of Vitamin D than has been described but GP declined because of the diuretic issue. Now, following your information I can direct him to the link you provided in your previous message.I think he is aware he will have to re-test my Vitamin D in about a month’s time. I think he knows I have a very good reason to make a complaint against the lab for refusing to test me for over a year.In the meantime I think I will stick to the prescribed dose, fully expecting my levels not to have increased very much, if at all. At that point, and helpfully armed with your information I can then make a good dose for a very much higher dose.! I will get back to you on this link and let you know how it goes.

      Answered by  taurito71102600 on
  •  taurito71102600 on

    Hi again. I seem to have encountered a problem taking the Vitamin D as prescribed by my GP. I started taking them but after a couple of days my ectopic beats seem to get worse so I stopped taking them. I then restarted them and the same thing happened. On Thursday I felt so awful and quite spacy I went straight to my GP.he checked my blood pressure, oxygen levels and did an immediate ECG. All normal.Do you know if taking Vitamin D could have caused this ? I have read om a Thyroid site I belong to that some people take their Vitamin D in an oral spray and wondered if you know anything about that method of supplementation ?
    After our last conversations I read up on osteomalacia (as you indicated my Vit D was that low as to be in the osteomalacia range). My biggest problem/confusion is what exactly is causing my symptoms.It appears that my underactive thyroid, my low Vit D and the heart itself can all cause the same sort of symptoms !! Any ideas ?
    Thank you.

    Answered by  taurito71102600 on
  •  IAW on

    Unless I missed something, we last left off that you were taking 1000iu a day. You said that you were going to go back to your doctor and I assumed ask that he increase your amount. So if that happened, how much are you taking now per day or week? Make sure it is D3 and not D2. Do you take any magnesium supplements and/or calcium? I can help you better if I know the answers to those questions.

    Answered by  IAW on
    •  taurito71102600 on

      I TOOK THE 1000 iu Vit D tablets as prescribed by the GP. He would not increase the dose ….was to go back in a month. So it was the 1000iu tablets once a day that seemed to cause the ectopic beat, feeling spacy and not very well.I actually only got to take the dose for 3 days before experiencing the above. I then re-started them and the same thing happened…but actually felt worse hence the trip to the surgery. The tablets are D3….but I found out yesterday they are a cheap brand and full of other stuff (fillers ). I have never taken calcium or magnesium supplements. both have been tested and are “normal”.

      Answered by  taurito71102600 on
  •  IAW on

    Blood tests for “any” mineral only measures the 1-2% that is in your blood stream and NOT total body stores. You could still be deficient and not have enough and therefore symptoms.
    It is actually Vitamin D that helps calcium absorb from your intestines. Your etopic heartbeats could have started for all sorts of reasons but one could be lack of calcium. It is not unheard of for doctors to prescribe calcium with Vitamin D and you have extremely low levels.
    When you say “not (feeling) very well” you will need to define that a little better.Then you need to go back up in this posting to the symptoms of hypercalcemia and read them again. After that then look at the following. The object is to see which category you feel your symptoms fit into.
    HYPOcalcemia (not enough calcium)
    The symptoms of “hypo”calcemia are/can be muscle spasms/twitches, numbness and tingling of your fingers and toes or around the mouth (pins and needles), depression, irritability,insomnia, very low levels may cause confusion, disorientation and HEART irregularities.
    Magnesium deficiency •Irritability or anxiety, Nausea, Headaches, Insomnia, Fatigue, Muscle cramps/twitching, Weakness and constipation.
    Hypokalemia / Low Potassium Symptoms are Weakness, tiredness, or cramping in arm or leg muscles, sometimes severe enough to cause inability to move arms or legs due to weakness (much like a paralysis),Tingling or numbness,Nausea or vomiting, Abdominal cramping, bloating, Constipation and Palpitations (feeling your heart beat irregularly),Passing large amounts of urine or feeling thirsty most of the time, Fainting due to low blood pressure, Abnormal psychological behavior: depression, psychosis, delirium, confusion, or hallucinations.
    I think your best bet is calcium but you could end up with multiple mineral deficiencies.
    Let me know what you think.

    Answered by  IAW on
    •  taurito71102600 on

      I have read the symptoms of hypercalcaemia again. The only symptom I would say I have which is related would be tiredness..I have more of the symptoms associated with hypocalcaemia. e.g tingling fingers, low mood, irritability, occasional bouts of insomnia.However, I am aware that this could also be due to low Vit B 12, thyroid or even low Vitamin D . I think that a lot of the symptoms are common to a number of problems. This makes it harder to work out what is causing what.! My main symptoms are extreme tiredness, lethargy and disinterest in doing things I would previously enjoyed…now can’t be bothered.I get occasional headaches, tingling fingers ….and these ectopic beats.
      I am currently waiting for the softgel Vitamin D to arrive…….unfortunately there had been a delay in delivery !
      I have also switched to decaffeinated coffee to see if that helps the ectopic beats.I have now heard that I am to be seen by the Arrhythmia Nurse in the Cardiology department in mid-April.I also intend getting my Gp to repeat my thyroid blood tests and B12 and Vit D so I can take the results with me.

      Answered by  taurito71102600 on
  •  IAW on

    Just keep this in mind. “Hypo”calcemia can be “life” threatening. To avoid that and take a calcium supplement along with the Vitamin D, for a while, would be best.
    Do you have any figures for previous B12 tests? Keep in mind that some places in the world the range “starts” at 450-500. So if you are below this, then you are most likely deficient. I have also noticed that many people with very low vitamin D levels are also B12 deficient.

    Answered by  IAW on
  •  taurito71102600 on

    My B12 was 494ng/L ( range 150.00 – 900ng/L ) in March 2016. I followed advice on Thyroid site to supplement with methylcolbamine B12 …..Nd then introduce a B Complex. I did this and in October 2016 my B12 was 667. I stopped taking them at the end of the year….I seemed to not feel right and thought one of these supplements must be the problem.
    Fast forward…..I did start the softgel Vitamin D..( 1000 iu )..to see how I got on with them. After 2 doses I experienced same problem ( ectopic beats etc) as I had with the tablets….so stopped taking them and symptoms went away. My GP doesn’t appear to have any answers to this…..doesn’t appear to know alot about vitamins etc. This leaves me at a loss! If my body won’t tolerate Vit D supplements how on earth am I meant to improve my Vit D level when I have to stay out of direct sun ! Have you ever come across this problrm before ?

    Answered by  taurito71102600 on
  •  IAW on

    At this point there is nothing to say that if you go out in the “sunshine” to make your Vitamin D, that you may still get the erratic heartbeats/symptoms if all of this is being caused be a vitamin or mineral deficiency. I really think you have a mineral deficiency and I explained above how this could be even with blood levels in range.
    You said you do not take any calcium or magnesium supplements. So I would get some calcium supplements (total 800mg) and magnesium (do not get oxide and get a total of 500mg) and try them with the Vitamin D. You may also want to take them for a day or two before adding the D back in.
    I just had someone with “odd” symptoms and he also thought it was the D. Instead he finally figured it out, the symptoms went away with magnesium and/or B6.

    Answered by  IAW on

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