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
firstname.lastname@example.orgParticipantihodgson@slingshot.co.nz 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 email@example.com 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 5 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
Mirela Lela on July 13, 2016 at 4:38 am
Hello, I have taken for one other month since we communicated 10.000 iu vitamin D3 since we talked and calcium, than switched to 5.000 iu vitamin D3. Pain continuous and it is mostly half all way back part, starting from neck to lower back. Actually last radiography I had, the doctor said that I have lumbar scoliosis, thoracic kyphosys , sciatica cervical (? this is the way I read it, strange maybe, but the description is straight neck), discopathy L5 S1. I find it strange to be justified the pain because of that, as those might have been existing before ……, anyway…. even though doctors have not specified clearly how much vitamin d3 should I take..(one says 1.000 iu, the other says stay in the sun…. ). , even though I keep spending money in private clinics for tests and examination (despite the fact our health service is for free… and I pay health insurance, anyway sorry I mention that…), I keep taking 5.000 iu vitamin D3 daily aiming to reach the level 0f 60 and see what happens. Since in our market there are not 5.000 iu tablets, and only 1.000 iu, and I am obliged every day to take 5 tablets, I wanted to ask if you have knowledge please there is a medication called Rocaltrol (Roche brand) calcitrol and it says “Active ingredient: synthetic calcitrol (biologically active form of vitamin D3 0.25 mg” (which equals 10.000 iu), is it vitamin D3, or just a form of it and supposed to treat other things?
Answered by Mirela Lela on July 13, 2016 at 4:38 am
- This reply was modified 3 months, 1 week ago by Mirela Lela.
- This reply was modified 3 months, 1 week ago by Mirela Lela.
IAW on July 13, 2016 at 7:18 am
Mirela we know you started at a level of 12ng/ml and in April you were at 38ng/ml. Have you retested your levels since April? (You made the comment above about “aiming to reach 60ng/ml.) Also JUST to make sure the levels you are given are measured as ng/ml and NOT nmol/l??
While you were taking the 10,000iu BEFORE you switched to 5000iu was your pain the same or better? Did the pain get WORSE when you decreased to 5000iu or is the pain the same no matter how much you take?
Can you order Vitamin D online and maybe it will be cheaper?? I do not know where you live (med area) and if you have access to Amazon or maybe http://www.greenvits.eu/collections/vitamin-d or https://www.biotechpharmacal.com/international-orders/.
Vitamin D3 is eventually converted to calcitrol in your body. The product you talk about above is already converted. It is much better for you to use the D3 and convert it yourself. That way your body is in control of the “raw product” so to speak. I do not recommend using.
After you answer the above questions, I will get back to you again!Answered by IAW on July 13, 2016 at 7:18 am
Mirela Lela on July 13, 2016 at 11:58 am
Thank you. The level i am speaking is in ng/ml. Last time i measured was by end of may and it was 33 ng/ml. Than i kept taking for 3 weeks 10.000 iu, after that 2 weeks 5.000 iu than started taking 2.000 iu since i started to go to the beach. Than i felt the pain is worst, so now since 5 days started to take again 5.000 iu. Thank you for the links,,,,, i will check them if they ship to my country. I live in Albania, amazon ships in my country as i have purchased other things through it…., but for medications i have been scheptic. … regarding the exp. Date or origin….. l will tryAnswered by Mirela Lela on July 13, 2016 at 11:58 am
IAW on July 13, 2016 at 1:36 pm
The Biotech brand is a really good brand and one we promote and carried by greenvits at the above link.
SInce you have been so sick, I would have recommended that you NOT go below 5000iu EVEN if you are going to the beach. (Maybe even not that low.) Can you go everyday to the beach? If not then you are really adding only a little bit of Vitamin D through sun exposure to the 5000iu and this really should not become an issue of too much Vitamin D. You really have to take much higher amounts of supplemental D and be able to go outside, everyday for hours and then you “might” start getting too much.
So since you decreased the amount of Vitamin D and started feeling worse, I really think it is still a Vitamin D problem and that in turn is causing the Hashimoto’s.
So if you were better at 10,000iu, then take that. If you were still unwell at 10,000iu then take 15,000iu and see if it makes a difference. OR if you can go to the beach for example, on weekends, take 10,000iu during the week days and take nothing on the days you can go to the beach.
You may have to take 10,000iu for the rest of your life and get some sun exposure to feel well. Your genetic makeup for you might need 10,000iu and not 5000iu.Answered by IAW on July 13, 2016 at 1:36 pm
Mirela Lela on July 14, 2016 at 8:02 am
Thank you. No I do not go every day to the beach. Only on weekends, and now only for 2 weeks i will go. I used the link http://www.greenvits.eu/collections/vitamin-d, and purchased already 2 bottles of Vitamin D3 of 5.000 iu; 250 capsules each. So I am well equipped…., and it was free shipping; and much cheaper than here…. thank you
Answered by Mirela Lela on July 14, 2016 at 8:02 am
- This reply was modified 3 months, 1 week ago by Mirela Lela.
Mirela Lela on August 31, 2016 at 7:32 am
I took for 1 month 15.000 iu Vitamin D. Tested it last week after not taking at all for 1 week, and the result was 60.2 ng/ml. During the time I was taking it, there were good days, and days besides pain in the shoulder middle back (which now this is an everyday thing, sometimes mild and sometimes more), there were days I was feeling very tired, and had burning feet and hands, legs.
But I’d like to mention, that during that time that I was taking vitamin d, I was taking vitamin b complex (since all the doctors have always told me to take vitamin b complex) But was my wrong decision that for ten days stopped the pills and took 10 injection daily of vitamin b complex of 2 ml/each, because I was thinking for those burning sensation of feet and hands…. I checked vitamin B 12 just in case after 15 days …, and result was little scary. The normal range according to the laboratory was 187-883 pg/ml, meanwhile my result was 6412 pg/ml
Maybe would had been all those sensation I experienced/exp. above, because of too much vitamin b, I don’t know. I will retest it maybe after 1 month. To conclude the pain is like this:
There are few days it is over all the body, fit, legs, arms, hips, (mostly it happens the days before it is going to rain, the day is raining I am oK.) Comparing to the beginning (when I was deficient) I am feeling much better
Than there are days one side of the body (neck, along shoulder, middle back) (some days mild pain, some days strong pain). It feels like, sorry for the primitive metaphor, but the muscle is like you take out frozen meet from the freezer and want to work over it , when I do stretching or massage.
Should I continue to take vitamin D even though my level is 60 ng/ml? is there any danger..
Thank youAnswered by Mirela Lela on August 31, 2016 at 7:32 am
IAW on August 31, 2016 at 10:51 am
I am not sure why you stopped the Vitamin D for a week, then got tested? So the level you measured is probably a little lower than what it actually was. So your level is not too high either way. You are in NO danger.
Now when you talk about “B complex” that usually means B12 and B6, B1 and B2. “Synthetic B-6 found in supplements — known as pyridoxine — builds up in the body and becomes irritating or destructive to nerves, especially peripheral nerve fibers in the arms and legs. Consequently, common symptoms of B-6 toxicity include burning pain, tremors, numbness and weakness in the arms and legs, balance problems, reduced coordination and difficulty walking.” So I am guessing some of your pain was from the B vitamins???
From what you said it sounds like you feel much better than when you were first diagnosed. Is this correct? I understand though, that you are not “totally better” and it sounds like the B shots set you back?
Are you still taking magnesium and calcium?????
To be honest sometimes you have to forget about your actual Vitamin D level and then decide, if I take more Vitamin D does it make me feel better, worse or the same? So at this point you may want to increase the Vitamin D to 20,000iu a day and see if it makes any difference to how you feel or your symptoms. You would have to try it for several weeks to see if it makes a difference. IF you get any new symptoms or symptoms get worse, stop the Vitamin D and tell me.
I am also going to try and look up some other information and will post it in a day or two.Answered by IAW on August 31, 2016 at 10:51 am
Mirela Lela on September 1, 2016 at 12:59 am
Hello, thank you very much!
I stopped taking vitamin d for 1 week and everything, to take the test.
I am not taking magnesium, or calcium. (Calcium only 5 days in between when I had the symptoms in the hands, feets…), but since nothing was correcting, I stopped it immediately. Regarding vitamin B complex, I was taking it last year, beginning of year, and then stopped for a while. Also, in total would be 6 months iron (which contain vitamin b, “ironorm” is the brand of iron). Now, I cannot tell exactly the time, little before, or little after increased the level of vitamin d to 15.000 iu (before that I was taking 10.000 Iu) I started to feel very tired and have those sensation I described above. So I thought to start again to take the same iron, since my last levels were around 40 and the doctor has told me to reach 100 or ferritina. Also I took the shots of vitamin b complex. The symptoms were there, even worse. Than I decided to stop to take everything in order to test vitamin d, and vitamin B12. (yes as you mentioned, I should be high in other b vitamins, but only this test was available to the laboratory I went.)
During the week I stopped everything, right after 2 days I was feeling much better. (Even there was first time since 2 years, I had 3 days in a row without pain)
Now, I do not know, it was because I stopped vitamin b, iron, or vitamin d.
After that I am taking now 5.000 iu vitamin D daily since 1 week.
Now I feel much better comparing to the beginning of beginning, and also comparing the moment I was having the symptoms above. But, as I said, every day I have pain and frozen shoulder through the middle back.
Can I make a trial stop taking vitamin D again for 1 week and see, or should I keep taking?
Thank you , thank you very much.Answered by Mirela Lela on September 1, 2016 at 12:59 am
IAW on September 1, 2016 at 5:48 am
Here is the thing I wanted to find so you may want to read https://www.verywell.com/preventative-thyroid-treatment-3233011. It concerns the Hashimoto’s.Answered by IAW on September 1, 2016 at 5:48 am
IAW on September 1, 2016 at 6:25 am
First make sure you read the above post.
I am having a very hard time trying to discern when you felt better and when you felt worse. At this point I cannot figure out if you are taking too much Vitamin D OR is it because you are NOT taking any magnesium or calcium OR did the B vitamins cause all the problems. Just like you said above “Now, I do not know, it was because I stopped vitamin b, iron, or vitamin d.” (Why are you not taking any magnesium???)
Sometimes too much Vitamin D can cause HYPERcalcemia. Sometimes taking Vitamin D can cause HYPOcalcemia and that is why someone would need to take the calcium..
For a Vitamin D test, just do not take any that day BUT do not stop for a whole week because it does not give you an accurate measurement.
If I understand correctly, you feel better now then what you did when you first contacted me??? You said though that “every day I have pain and frozen shoulder through the middle back.” If I had to guess on what to do next, I would say take the 5000iu everyday for at least a month. Pay close attention to if your symptoms are getting “worse” or “any symptoms are coming back that you did not have anymore”. If things start getting worse, then you would need more Vitamin D. Over the next month, EVEN without stopping the Vitamin D, your levels will go lower because you are now taking a much lower amount of D.
Try NOT to add or change anything else.
How much iron are you suppose to take a day? If it is not a big/large amount then maybe you should keep taking it or at least take it every other day. If your iron levels go low than you might get symptoms from that and we will not be able to tell if it is iron related or Vitamin D related.Answered by IAW on September 1, 2016 at 6:25 am
Mirela Lela on September 1, 2016 at 8:23 am
Thank you very much!
Regarding the link, I read it, and actually I was thinking about it, because, the shoulder and middle back mild pain I experienced lets say 6 year ago. Again, 6 years ago, it happened I checked for the first time the thyroids, and even though, I had normal TSh, the endocrinologist subscribed me levothyroxine treatment, lets say that I took it for 3 years, and I didn’t experience pain for 3 years. So even though something was wrong already with cervical and lumbar thing, I didn’t have any pain. Now there are times even though I take pain killers, (now exp.) aleve, and sometime naproxen sodium with codeine the pain doesn’t stop. I will test again TSh, and tgab, and most probably to go back to the initial endocrinologist, even though she is not the best here…… But I do not know why here they do not give you levothyroxine during summer time.
Regarding your question why I do not take magnesium, I didn’t take any longer, because last year September to end of November I took very large doses of it (decided by myself after reading on internet…. Possible causes of my pain… ), and didn’t have any improvement, only first week and latter nothing. So, I was thinking that my body has already magnesium. Maybe I am wrong; they should be taken together with vitamin D.
Regarding your question if I feel better since I first contacted you. Yes I feel better.
Regarding the question how much iron I am supposed to take, initially the hematologist prescribed me to take 3 pills of Iron. Below the content.
Each capsule contains: Ferrous Sulphate Exsicc. BP 195 mg Folic Acid BP 1.7 mg Thiamine Hydrochloride BP (Vit B1) 1 mg Riboflavine (Vit B2) 2 mg Ascorbic Acid BP (Vit C) 15 mg Nicotinamide BP 10 mg
I took 4 months until end of January/february, than I tested; it was around 40 (I do not remember exact), I didn’t take any more since I started last month, and was taking 2 pills. But I am not taking now. When I go to test for Tsh, tgab, I will take a test about it as well.Answered by Mirela Lela on September 1, 2016 at 8:23 am
IAW on September 1, 2016 at 8:51 am
“But I do not know why here they do not give you levothyroxine during summer time.” I have no idea. Here is the USA you either need it or you don’t and if you need it, you take it year round. Some times people have also said you may need a higher amount in the winter time.
You may want to take a little supplemental magnesium just so we can “rule that out” as an issue.Answered by IAW on September 1, 2016 at 8:51 am
Mirela Lela on October 5, 2016 at 3:21 am
Hello, back again to update….
I did the test of TSH and antibodies, 3 weeks ago. The TSH was normal 2.97uIU/ml; Tgab was 52.9 iu/ml and according to the laboratory the range was normal as their range varied from 0.0 to150 iu/ml, meanwhile when I did it previously on April to a different laboratory, the result was 61 UI/ml , and the normal range was 0 to 18 UI/ml. I asked the laboratory why there is a different normal range from laboratory to laboratory, and they said they use different kits of measuring the results. Also, according to the endocrinologist, it meant my levels of Tgab went back to normal. She didn’t give me neither levothyroxine (it may worsen my pain said, since the results are normal, she said to test again in November the TSh and T4), nor vitamin D. She said that I have to ask the rheumatologist regarding vitamin D.
Actually I have been taking vitamin D3 5000 daily. Also I’d like to mention that the pain that I had in arms, feet, legs, hips, 2 symmetric points under the skull, are not coming back anymore. Only the right shoulder and neck keeps hurting/freezing and making noise when I move. Since last month I experience kind of vertigo, losing balance; it might be because of the neck…, or because my body is changing…. the gynecologist said that the signs of menopause have started… (I am 47 years old.).
Should I keep taking 5000 iu Vitamin D3 daily? Should I take any calcium?
To conclude; those are my highlights:
• The Tgab results are back to normal
• I have not pain in other parts of the body(arms, feet, legs, hips, 2 symmetric points under the skull), as used to have before starting getting vitamin D. (now only shoulder and neck, and time after time vertigo)
Thank youAnswered by Mirela Lela on October 5, 2016 at 3:21 am
IAW on October 5, 2016 at 7:03 am
I am glad for the most part that you feel better!
The TgAB reference range here in the USA is “Less than 20 IU/mL” as per http://emedicine.medscape.com/article/2086819-overview.
The “one sided shoulder pain” could just be a mechanical problem and not Vitamin D or thyroid related.
Originally, back in April, you said you had “vertigo” spells when things “were really critical last Summer”. So now you are saying the vertigo is back? It sounds like that started after you dropped the Vitamin D from 10,000iu to 5000iu? What do you think?
If this was me in this situation, I would do the following.
Since you have a known “autoimmune” disease going on, I would increase my Vitamin D back up to 10,000 iu a day to try and combat the Hashimoto’s. (See if the vertigo also stops!) I would not worry about the Vitamin D level but instead concentrate on how you feel and if the vertigo goes away. I would absolutely take a minimum of 200mg of calcium and 200-400mg of magnesium a day. (Lack of magnesium can also cause vertigo.) This way we also do not have to worry if you have a mineral deficiency.
If you add any new symptoms, come back and tell me first and let me know if the vertigo goes away!Answered by IAW on October 5, 2016 at 7:03 am
Mirela Lela on October 5, 2016 at 8:31 am
Yes, I experienced last summer vertigo, and at that time the neurologist stopped me getting beta-histamine, and instead gave me amitriptilin since she was thinking I would have fibromyalgia. But as I mentioned before, at that time decided myself to take magnesium, and took for aprox. 4 months. The vertigo was healed. Now the symptoms are not as heavy as last year…. I am getting myself beta-histamine again for that, as I do not want to go again to the doctor; I just do not want to start explaining again and again, as it is they do not listen. they listen, or take into the consideration what fells to their specialty, and never could bring together all the facts….Answered by Mirela Lela on October 5, 2016 at 8:31 am
IAW on October 5, 2016 at 9:31 am
I completely agree with you on the whole doctor thing. I have one right now I am not too happy with.
If you start on the beta histamine right now, with the magnesium and it gets better, then you will not know which one helped. I suppose you could then withdraw the
beta h and if you are still OK, assume it was perhaps the magnesium that helped. (I would hope that if it is just low magnesium that it will not take months to correct the dizziness but hopefully only a week but I do not know for sure.)
You did not say if you are going to increase the Vitamin D because even that may stop the dizziness. Just because you do not have all the symptoms you once had, I find it questionable that your dizziness started with a decrease in Vitamin D. You may need the 10,000iu of Vitamin D BUT it may have caused low magnesium that you have to correct.
If you could try the magnesium, calcium and extra Vitamin D for a week without the beta h and see what happens, I think that would be best. Then let me know what happens.Answered by IAW on October 5, 2016 at 9:31 am
Mirela Lela on October 6, 2016 at 6:08 am
Thank you. Regarding Vitamin D, I just want to ask if I am safe to take 10.000 IU since my last levels were good…, I will cease the beta-H thing and start magenesium. Also I wanted to ask if magenesium Hydroxide 375 mg is ok (Vitabiotics), or should I look better for citrate one? thank you.Answered by Mirela Lela on October 6, 2016 at 6:08 am
IAW on October 6, 2016 at 8:16 am
No, do not get hydroxide it is not very bioavailable.
The “official” safe upper limit of Vitamin D is 10,000iu. Many of us take more than that but that is the “official” limit. So instead of focusing on your blood level, take the 10,000iu and see if the dizziness goes away and maybe the shoulder issue. (It really sounds like the shoulder issue has been there no matter how much Vitamin D you have taken????)
I wrote above” I find it questionable that your dizziness started with a decrease in Vitamin D.” By your description it sounds like it started after decreasing the Vitamin D????? If the dizziness goes away then maybe you (your genetic makeup) needs somewhere between 5000-10,000iu a day. I was trying to work with the 5000iu capsules that you already have. The other thing you could try that might work is to take 10,000iu one day and then 5000iu the next day and keep rotating. You could also do 5,000iu on Monday, Wednesday and Friday and 10,000iu the rest of the week. Your average will then be lower than taking 10,000iu every day.Answered by IAW on October 6, 2016 at 8:16 am
Mirela Lela on October 6, 2016 at 9:14 am
Thank you. Yes the dizziness started after I decreased the vitamin D intake…. And the shoulder issues it has been there all the time, no matter how much vitamin D I take or took. I will try to take the Vitamin D scheduled as you suggest, and see what will happen. Thank you, thank you very much. You have been very helpful.Answered by Mirela Lela on October 6, 2016 at 9:14 am