Asked by Mirela Lela on April 18, 2016
IAW on April 18, 2016 at 9:12 am
It does come under Endocrinology.
The only problem will be is if they are not up-to-date on information. Meaning they might believe that a level of 20ng/ml ( which equals 50nmol/l) is just fine. There is overwhelming evidence that you need a level of 50ng/ml (125nmol/l) to be healthy.Answered by IAW on April 18, 2016 at 9:12 am
Mirela Lela on April 19, 2016 at 3:18 am
Thank you, I experience a lot of pain since 2 years now in the neck, shoulders hips, arms ribs, calf muscles. The muscles are very tight, make noise, twitch…. I was consulted by a neurologist, made some checks such as MRI neck and the result was ok. than the neurologist started to mention (not diagnose), fibromyalgia and gave me amitriptilin and vitamin b complex. also gave me further exams, such as aldolaze, fibriogen, natrium, calium, clor (electrolytes, i cannot find in correct english the words..) CK, LDH, calcium total, dexa, TshFt3Ft4, and all the results were Ok. the only result that was not normal was vitamin D, which was 12.3 ng. my doctor prescribed 1.000 UI vitamin d daily, which I find very low dosage, so after research on internet started to take 5.000 UI daily since 2 months now, but my pain/condition has improved just little bit. I have stoped taking amitriptilin…. I am a little bit confused, as I do not have a definite diagnose, and my question is: could all this pain be only because of vitamin d deficiency? am I supposed to have pain of vitamin d deficiency even though I am taking vitamin D? could it be fibromyalgia?, should I take further exams? should I see an endocrinologist? A lot of question…Answered by Mirela Lela on April 19, 2016 at 3:18 am
IAW on April 19, 2016 at 5:22 am
You are very Vitamin D deficient. At this level you can experience muscle and bone pain (Ffibromyalgia is most likely a Vitamin D deficiency instead of a separate disease.) Since you did improve “a little” while taking the 5000iu, I would suggest you do the following.
First read http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-and-other-vitamins-and-minerals/. These are co-factors that Vitamin D needs to work EFFECTIVELY. It talks about magnesium which is very important for Vitamin D to process. Most people are magnesium deficient and need to take supplements. (Do NOT get magnesium oxide. Any other type is fine such as citrate or chloride. Take a minimum of 300-400mg a day.) You can try adding the magnesium first with the 5000iu for a week or two and see if you start to improve faster. If not then you should take 10,000iu of Vitamin D a day and see if that helps.
We usually recommend that people get retested to see if their levels are improving. So for example if you took the 5000iu for two months, then retested and your level barley increased or did not increase enough, we would then recommend taking a higher amount. A healthy level to maintain is a minimum of 50ng/ml. Most people need 5000iu to reach and maintain that goal but some people need more. That 5000iu is also based on a person with an average weight of 150lbs. So if you weigh more, you have to take more!
You may also like to read http://www.vitamindcouncil.org/q-a-forum/topic/cured-of-fibromylgia-8-years-ago-in-reference-to-httpwww-vitamindcouncil-orghealth-conditionsfibromyalgia-i-find-it-really-sad-that-research-falls-short-on-either-the-amount-of-vitamin-d-sup/.Answered by IAW on April 19, 2016 at 5:22 am
Mirela Lela on April 20, 2016 at 3:39 am
Hello, sorry again with question please if it is possible… To retest vitamin d, is it necessary to stop taking it for certain days, or you can retest meanwhile taking it?
Another question, is it ok to take this magnesium with this content Lactate de magnésium/Chlorhydrate de pyridoxine
Thank you!Answered by Mirela Lela on April 20, 2016 at 3:39 am
IAW on April 20, 2016 at 4:27 am
I am not sure but I think it is magnesium with B6 in it. So I think it is OK but not entirely sure.
In your case on the day you want to test, I would not take the Vitamin D, then test and after you test make sure you take it.Answered by IAW on April 20, 2016 at 4:27 am
Mirela Lela on April 20, 2016 at 4:41 am
Yes it is with b6 vitamin, magnésium (lactate de) dihydraté 470,000 mg > chlorhydrate de pyridoxine 5,000 mg ; I will try to find magnesium citrate or chloride….; at lease it doesn’t have any relation to magnesium oxide!?
thank youAnswered by Mirela Lela on April 20, 2016 at 4:41 am
Mirela Lela on April 27, 2016 at 12:41 am
Hello, I retested vitamin d yesterday. I didn’t take vitamin d only for one day in order to retest. the result was 38.1 ng. should i continue to take 5.000 iu vitamin d? Even though there were improvements of vitamin d in the blood test, still I am experiencing a lot of pain every day…. does it take time for the pain ta vanish if we assume it is due to vitamin d deficiency? thank youAnswered by Mirela Lela on April 27, 2016 at 12:41 am
IAW on April 27, 2016 at 4:41 am
Mirela I am very glad to see that your levels have increased. This way we at least know that you do not have a problem absorbing the Vitamin D.
Your level is not at 50ng/ml or above. If people already have symptoms or are in a diseased state, then we usually recommend reaching a higher level, for example 80ng/ml.
The “official” safe upper limit of Vitamin D to take is 10,000 iu a day. I would highly recommend that you double the amount you are taking to 10,000 iu per day since you are not feeling much better. This will probably bring your level to the 80ng/ml. (Science already knows that you would have to take 40,000 iu a day for months in order to “maybe” become toxic with Vitamin D. If this happened you would have to stop taking it until your levels decreased and there is NO permanent affects from an overdose.)
You can come back here as many times as you want for advice or to let me know how you are doing. I think you should take the 10,000 iu per day for 4 weeks, then come back and let me know how you feel and we’ll go from there.
You said the doctor tested your TSH, Free T4 and Free T3. If possible could you get the results and give them to me?Answered by IAW on April 27, 2016 at 4:41 am
Mirela Lela on April 27, 2016 at 7:16 am
Thank you. The TSH was 3.04 uU/ml, FT3 was 3.48 pg/ml, FT4 1.32 ng/dl, and yesterday I decided to check phosphorus which was 3.86 mg/dl. I’d like to mention that up to date I have been consulting with a rheumatologist and neurologist, not by an endocrinologist. Also, last year I had anemia due to iron deficiency, ferritina was 3.5, which is corrected now. there is a fact also to mention that for many years i have used a lot of laxatives…., which I have stopped taking them last year by adding wax seed to my diet. I live in a Mediterranean country,… but long hours office work… thank youAnswered by Mirela Lela on April 27, 2016 at 7:16 am
IAW on April 27, 2016 at 11:24 am
Mirela one of your last questions was “Even though there were improvements of vitamin d in the blood test, still I am experiencing a lot of pain every day…. does it take time for the pain to vanish if we assume it is due to vitamin d deficiency?” It seems like some people start to feel better fairly quickly and others take quite a few months to feel better. This may be because they may have needed more Vitamin D up front to make them better faster. So in your case maybe if we had started at 10,000iu a day you would have seen improvement by now. Do you think that your “pain” has really not changed at all since taking the 5000iu??
Having said the above, I try and keep an open mind because maybe someone like you does have something else going on. That is why I asked for your thyroid levels which in fact leave me confused. You have great FT4 and FT3 levels. An average morning TSH level is normally about 1.5 give or take a little even though the range can be “quite wide”. (A bit of a warning though some Endocrinologists may not believe in the 1.5 and use whatever the range is. Just like the doctor or whoever did the tests, does not see the 3.04 as a problem.) Your level is twice the average. I do not know if it could have something to do with antibodies or if you are someone whose TSH level is normally that level. According to the internet when autoimmune hypothyroidism starts your TSH will increase but for a while your other levels will be normal. I would try and get someone to test for antibodies. Please see https://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test/.
If you do show antibodies, then I would recommend even more Vitamin D because autoimmune conditions start because of low vitamin d levels
You also asked “should I check as well PTH”? I don’t think so.Answered by IAW on April 27, 2016 at 11:24 am
Mirela Lela on April 28, 2016 at 2:54 am
Thank you, regarding the pain, I would say it is a little better comparing before starting taking vitamin d, as before it was like i was going to “collapse” every day. Now there are days the pain is less, but there are days whereas pain is intense, and even though I take pain killers (advil, Ibuprofen, apranax [ naproxen with 30mg codein], they do nothing. Anyway, maybe i had “high expectations”… Regarding your question about taking other medications, I take iron once a day, and propanolol 10 mg in the morning as I have high puls beats in the morning. Regarding your observation about the thyroids levels, actually I have not checked them with an endocrinologist….., and it is good idea to further “investigate’ the thyroids… regarding the test for antibodies I do just one of them indicated in the link you provided, or all of them? Or I consult first with an endocrinologist for any opinion. thank you.Answered by Mirela Lela on April 28, 2016 at 2:54 am
IAW on April 28, 2016 at 4:33 am
Your expectations were not too high!!! So do not give up yet! If you have an autoimmune condition going on and do not know it, the 5000iu is not going to do much. You will need to take a lot more Vitamin D.
I am sorry I did not ask you sooner if you take any medications. First were you diagnosed with any condition that was/is causing the “high puls beats”? Did this start about the same time as the pain or before or after? Once you answer I can give you a better answer to your above questions.Answered by IAW on April 28, 2016 at 4:33 am
Mirela Lela on April 28, 2016 at 5:21 am
Sorry, i didn’t explain more regarding the “puls beats’; this medication was prescribed actually 25 years back when having a cardiology test and apparently one of my heart rooms (i do not remember well) was bigger or smaller (nothing to worry)… nobody told me to continue to take it…., .. and it happens to have high puls beats after I take the morning coffee…, or I run…, or maybe the anemia thing, which it has been repeated the last 10 years. I may avoid taking it…, because I have the feeling that if do not have coffee, or run it is normal….
Since yesterday I started to take 10.000 iu vitamin D. I am 65 kg, which might be around 140 lbs.
Thank youAnswered by Mirela Lela on April 28, 2016 at 5:21 am
Mirela Lela on April 28, 2016 at 5:31 am
sorry, so to conclude, the puls beats, were very long time before the pain started. the big pain started 2 years ago, but I remember I had a little pain going and coming in one of my shoulders and thoracic part of spine lets say that started 5 years ago, but was very mild… with little rest could go…Answered by Mirela Lela on April 28, 2016 at 5:31 am
Mirela Lela on April 28, 2016 at 5:55 am
Maybe I have to clarify, that anemia was not due to blood loose; it was maybe due to overuse of laxatives, or because for my former hematologists the “correction” i reached was normal…, but my last hematologist said I have to make sure the ferritinemia have to be 100Answered by Mirela Lela on April 28, 2016 at 5:55 am
IAW on April 28, 2016 at 8:17 am
So I originally asked if you take medication and if so, could it be having an effect on your thyroid. Beta blockers like Propranolol, can affect thyroid function. They are used particularly when you have the autoimmune disease Graves which causes high thyroid levels which cause a racing heartbeat among other symptoms. (I had wondered if this is why you were taking it in the first place.) Hashimoto’s Thyroiditis another autoimmune disease causes low thyroid levels with symptoms like extreme fatigue and muscle and joint pain. Thyroid antibodies can also cause a “swing” between hyperthyroidism and hypothyroidism. One minute you are one and the next minute you are the other. So I am not sure if it is or is not having an effect on you.
Now if your heart issues are actually caused by what I am going to call a “mechanical defect”, something is too small or too large, than that is a separate issue. I can also tell you that the heart is a muscle and that muscles use” lots of Vitamin D” to function properly. So low Vitamin D levels can cause heart irregularities such as Atrial fibrillation.
Low Vitamin D can also cause anemia, so keep that in mind.
I think it would be good if you could still have someone check for the antibodies. That way it can be ruled out one way or another and might influence just how much Vitamin D you need to take. You can either start with a regular doctor and see what results you get or take it to an Endocrinologist. These are the tests: Thyroid peroxidase antibody (TPO) and Thyroglobulin antibody (TGAb). If you do this, make sure you get the actual, numbered results. (If you want to wait a few weeks to see if the higher amount of Vitamin D makes you feel better, you can do that too.)
Let me know what you think.Answered by IAW on April 28, 2016 at 8:17 am
Mirela Lela on April 28, 2016 at 12:46 pm
Thank you. Yes I think I will have to have the tests of antibodies done, as now i was diging to find any former thyroid tests done and I found one done on 2014. The tsh was 2.2 than, and i had a thyroid eco (Sorry I do not know whats called in English, kind of imagery test…), and according to findigs, i was prescribed letrox (sorry for not mentioned, but I was cured, and last year I was told to get lower dossage, so I assumed I was healed,,,,and didnt check this year). Also, when I try to find releve by massaging the neck, next to thyroids I find a point as a grain seed that hurts when pressed, besides other point right below the skull which hurts and pops and cracks … Also last summer when the situation was really critical…. I had kind of vertigo, lossing balance for one month. I do not know…, but somehow I connected this due to the fact I was told to make neck excercise, and I was doing accupunture at that time…. Anyway, a lot of information maybe not relevant……, but I will test the antibodies, and let you know…. thank you very much, I really apreciate your help, because somehow I had started to think I have the fibromyalgia…., and I have to live with painAnswered by Mirela Lela on April 28, 2016 at 12:46 pm
Mirela Lela on May 3, 2016 at 11:23 am
Hello, first i’d like to thank you once again for your help. I tested the antibodies and the results are tgab 61 UI/ml, tpo 0,8 UI/ml. I have not seen yet an endocrinologist, as our best one is already scheduled till end of may…. the tgab looks really scary…. what should i do? Rush to see as soon as possible an edocrinologist? Thank you.Answered by Mirela Lela on May 3, 2016 at 11:23 am
IAW on May 3, 2016 at 12:15 pm
This is how I see it.
I do not think you need to rush to the endo, just get an appointment as soon as you can. That Endo (or someone) needs to decide if you are going to take the Propranolol is that OK or is it interfering with your thyroid function. Then they need to investigate the “pain” near your thyroid. Next they need to decide why your TSH is “high” and if you should really be taking medicine with your history.
Now all of your thyroid issues and the antibodies could have been caused by low Vitamin D. What I do not know is if you can “cure” yourself with just the vitamin D a lone or you may need to also take the thyroid medicine.
So while you are waiting for that appointment, why don’t you try taking 10,000iu of Vitamin D a day and see if it helps anything.(I think you are still taking 5000iu but correct me if I am wrong!) If you add any symptoms, come back and tell me.Answered by IAW on May 3, 2016 at 12:15 pm
Mirela Lela on May 3, 2016 at 12:59 pm
Thank you. No, i am taking 10,000 iu of vitamin D, and the pain was better the last 3 days; even though its there….I have stoped also taking propanolol; i can live without it. I think that i have not had any symptoms taking more vitamin D; the only thing i needed more sleep, and had not sugar cravings, which usually i have a lotAnswered by Mirela Lela on May 3, 2016 at 12:59 pm
IanParticipantIan on May 4, 2016 at 1:25 am
you are clearly describing the symptoms of fibromyalgia and while vitamin D is recommended it will not eliminate your pain. There is no test for FM. Many people with FM do get some pain reduction with vitamin D, the dose is generally around 10,000 IU daily.
Fibromyalgia is a complex syndrome with many different “theories” as to it’s origin. The most commonly accepted explanation is that is caused by poor modulation (control) by the part of the brain responsible for modulating sensory signals. This not only amplifies pain but can also amplify other sensory signals. This is why people with FM have increased tinnitus, sound sensitivity, light sensitivity, heat sensitivity and even changes in balance. What causes the loss of modulation is unknown but the most likely causes are as follows:
chronic persistent pain especially spinal pain such as caused by stenosis
chronic emotional pain (sometimes called stress)
There is little or no evidence that the cause is related to diet or dietary deficiencies or that it is “psychological”. There is some evidence that genetic factors play a part in Who gets FM and Who does not. Typical pain killers have little effect on fibromyalgia pain but the most commonly used are tricyclics (such as amitryptiline), gabapentin (a neuropathic pain medication), cannabis and sometimes SNRIs. Some trials using melatonin have shown that it is effective in reducing many of the symptoms of FM, the dose being between 10mg and 20 mg nightly.
Regular light exercise is obligatory becuase stillness promotes stiffness. It is also essential to improve sleep.Answered by Ian on May 4, 2016 at 1:25 am
IAW on May 4, 2016 at 6:17 am
Ian for now I am going to disagree with you and here is why.
If you read http://www.vitamindcouncil.org/q-a-forum/topic/cured-of-fibromylgia-8-years-ago-in-reference-to-httpwww-vitamindcouncil-orghealth-conditionsfibromyalgia-i-find-it-really-sad-that-research-falls-short-on-either-the-amount-of-vitamin-d-sup/ Lisa “cured” herself. I suppose you could argue that the doctor’s initial diagnosis was wrong and that is why Vitamin D helped her.
I was also given the diagnosis of fibromyalgia in my life. When given this diagnosis, I had already done a lot of research on hypothyroidism and knew I had a thyroid problem. Only problem was the “gold standard” for diagnosing is a TSH test. The TSH test range has an upper end of 4.5-5.00. Considering the average for a morning TSH is 1.5, this is going to cause a lot of people to be told they are fine, when in fact they are hypothyroid. If you are lucky now days, they will also test your Free T3 and Free T4 levels. Guess what, those ranges are also badly skewed and far too wide. With thyroid medicine my symptoms disappeared and later I was diagnosed with Lyme Disease.
So I think fibro is either a Vitamin D deficiency or thyroid problem or combination. By combination “my” theory is a D deficiency can start causing an autoimmune thyroid problem and eventually symptoms. Doctors very rarely even think to test for these antibodies and just look at a TSH level and we already know that the range goes too high. So if the “antibodies” are the “key”, then you might be able to stop the progression and maybe reverse it.
If you or anyone wants to reply to this, please copy it out and start a new thread/question.Answered by IAW on May 4, 2016 at 6:17 am
Mirela Lela on May 23, 2016 at 12:41 pm
Hello, i managed to see the endocrinologist. He gave some tests.
Ionisized calcium result was 1.07mmol/l
Vitamin d, result was 33.5 ng/ml
Pth, result was 22.3 pg/ml
Tsh, result was 3.25 mul/l
He said i’ve got hashomoto, but since the tsh was normal, i have not to get medication, and retest the tsh and antibodies on november. I insisted that i have pain but according to him no medication…. for him even vitamin d was normal now and i can get only 5000iu day. I insisted that since i have an autoimum0ne dessise i shoud reach a higher level….. one of my shoulder and below it is frozen and constant pain and noise. He said to go and check tomorrow with reumatologist and they both could consult with each otherAnswered by Mirela Lela on May 23, 2016 at 12:41 pm
IAW on May 23, 2016 at 1:39 pm
So from about May 3 till now you have been taking10,000iu a day? On May 3rd you also said “the pain was better the last 3 days”. Is the pain even less now but still there or about the same as May 3rd? Let me know!
Your Vitamin D is not up to 50ng/ml so I would continue the 10,000iu a day.
“The reference range of ionized calcium is 4.4-5.4 mg/dL (1.1-1.35 mmol/L)”. You are LOW in calcium. Go get some calcium supplements and take them. Vitamin D needs calcium.
I will comment further on the Hashimoto’s after you answer the questions above!Answered by IAW on May 23, 2016 at 1:39 pm
Mirela Lela on May 23, 2016 at 2:34 pm
Yes i am getting 10.0000 iu daily. Regarding the pain, itis better because before it was both shoulders, neck, hips and legs, arms. Now it is located only on my right shoulder and below, and sometimes middle back. The ionized calcium result is 1,07 mmol/l, meanwhile next to the result it is indicated the normal value of it, which is 1 to1,2 mmol/l, according to the laboratory….., and according to the doc i was normal….Answered by Mirela Lela on May 23, 2016 at 2:34 pm
Mirela Lela on May 23, 2016 at 3:01 pm
How much calcium should i take? Should i keep taking magnesium too? Actually i have taken last fall 3 months magnesium on my own since i red that the symptoms i had were the same as magnesium deficiency.
Answered by Mirela Lela on May 23, 2016 at 3:01 pm
- This reply was modified 1 year, 8 months ago by Mirela Lela.
IAW on May 23, 2016 at 3:06 pm
Your range starts at 1 and mine starts at 1.1 and you are at 1.07. Now what I have learned since starting your Q and A, is that calcium levels do not necessarily have to be “out of range” in order to get symptoms. I have also learned that if your Vitamin D levels are low enough, then doctors should be prescribing calcium to go with it.
So calcium supplements are not expensive and well worth a several week “trial” to see if it helps. Do you agree? How about 500mg a day? (With an original level of 12ng/ml you probably have/had osteomalacia/adult ricketts.)
Before pursuing the “hashimoto’s”, you may want to try the calcium and keep taking the 10,000iu for another month and see how your symptoms are and let me know. Enough Vitamin D and you “may” reverse the Hashimoto’s.Answered by IAW on May 23, 2016 at 3:06 pm