Over the last few years I have had bouts of tiredness, fatigue and flu like symptoms but always came back round and felt fine. I also suffered from cluster migraines, again, these would disappear and I would feel fine. Over the years various tests, scans etc would be performed and all results would show nothing wrong. 2 years ago I started getting migraines again and they go to the point that I was referred to a Neurologist. During this time, I was prescribed Gabapentin (Neurontin) to help manage the migraines. Once again, MRI scan showed nothing of any concern and blood tests were fine. Then the migraines disappeared and I started to suffer from Trigeminal Neuralgia. The Gabapentin dose was increased and strong painkillers were also prescribed. This was in June 2014. Then the TN just seemed to disappear and I felt fine. In August 2014, one Saturday morning I woke up in pain, feeling sick, aggitated and eventually was physically sick. As soon as I was sick, I suffered from a seizure and was admitted to A & E. Again, all tests came back absolutely fine!!! After this I started to experience a whole heap of symptoms - fatigue, pain, nausea, tremors, hot and cold, the list just went on!!! I was referred to a Neurologist who advised that the pain was a secondary symptom to another problem. Just needed to find the original source but it was out of his remit because it wasn't a Neurological problem. So I was referred to a pain clinic and was diagnosed with Fibromyalgia!!! I argued with the doctor that I didn't believe it and that I felt it was something else. But no, they had decided it was Fibro!! Over the next 18 months, things have got worse, I ended up changing from Gabapentin to Pregaballin but things still got worse. In January I made the decision to come off the medication. My head instantly felt better, my eyesight was clearer, I also had a little more energy but the pains in my bones and joints were getting worse. So a couple of weeks ago I went to the doctor about this. She tried telling me that it was Fibro pain. I told her that it definitely wasn't anything to do with Fibro. So she agreed to run some blood tests. I had the tests on a Monday and 3 days later I received a letter from the doctor asking me to make an appointment to see her to discuss the results. I could only get an appointment for this coming Thursday 27th April. A couple of hours after I rang the surgery I received a phone call from the surgery receptionist telling me that the doctor had just received another result from my blood test and a prescription had been written for me. I asked what it was for and she told me that I had been diagnosed with Vitamin D deficiency. "That's interesting" I said. So I go the script for 3200IU Vitamin D3. Now I don't know what the level of Vitamin D is but since I have found this out, I have been scouring the internet regarding this. It all makes sense and I certainly know that I have NEVER been tested for this!! Why not??? 2 years of my life taking rubbish that certainly also causes Vitamin D deficiency. I cannot wait to find out what else has been found in the blood tests but more importantly what the level is. I am trying not to get cross about this but it is very difficult. I never gave Vitamin D a thought and why didn't they 2 years ago. I have read about so many people being diagnosed with Fibro and it turns out to be something that can be easily sorted. I am just wondering if there is anything else I should be asking to be tested for because it looks like they hadn't covered all bases as I previously thought????? Sorry for the long post but I just hope that this helps someone else who is going through a similar thing being diagnosed with something that it isn't.
my vit d was 25 and my gp just prescribed 800 iu per day which is far to low a dose, see if they checked your b12 and folate as both have similar symptoms x
My vit D was 26, it should be a minimum of 50 and they are now saying it should be at least 70. Vit D awareness does seem to be something that is becoming more prevalent recently, I read that at least a quarter of the UK population are deficient. My local pharmacy had a vit D day offering free tests and the pharmacist said half the people tested were deficient. It might explain the number of tired achey people around!
Hello,
I am not at all surprised by this post as I was ill for 5 years before anyone checked my vit d level which was 8 last April. Since then, loading doses of vit d3 from my G.P , sitting in the UK sunshine each day for 15 minutes for three months gave me a level of 56. Gp's before had no idea and I was told it was nerve damage in my feet after an accident and given Amytriptiline which didn't help except make me so groggy I could hardly function! In 2010, I was diagnosed with Plantar fasciitis in my feet, no explanation for burning muscle pains in my legs, bone pains all over, constantly fatigued, brain fog, IBS, indigestion, eye problems and insomnia! I was even seen by a chronic fatigue clinic last october when I was improving and they told me that vit d deficiency mimics chronic fatigue/viral symptoms and fibromayalgia and some people are wrongly diagnosed.
Today- none of these symptoms apart from tired muscles after walking more as I am building myself back up again after becoming so de-conditioned. It has been an absolute nightmare as I knew like you that I was unwell, but could not accept what I was being told as there were so many symptoms.
Over the last year, I have read and researched this and it can be 2-3 years of low vit d levels before symptoms start to show as osteomalacia I got to the point that I was unable to walk upstairs or get out of the bath and this was when my GP found the low vit d in a blood test and my bone profile was out of wack too.
I have resorted to taking my own vit D supplements and get blood tests privately to check my levels in the winter. I feel so much better- it's like a miracle to have my life back.
I wish you well.
hi my vitamin d was 25 am also doing the protcol on the vitamin d facebook page plus private bloods, did you get your b12 and folate checked as most folk are low on both , low b12 causes nerve damage brain off and tiredness x
My vitamin d level is currently at 10!! So I am now having various other tests to see how much damage has been caused along with checking to see if there is another reason for having such a low level. There were also other results that came back from my blood tests that now need to be investigated. This is because they have now looked back at my medical history and recent severe illness which ended up with a stay in hospital after a week of severe vomiting. My B12 and folate levels were fine, so that is something. My doctor agreed with me that it is lookinglike the diagnosis of Fibro was wrong. Unfortunately, due to how it all came about, she did not have any say in it as I was seeing a Neurologist at the time due to severe migraines. Everything else just seemed to get swept along.
So here I am now, throwing Vitamin D down my throat, getting out in the sunshine when it allows, but the pain in my bones is off the scale. I have more blood tests next week and a follow up appointment at the docs the week after to discuss the results and see what the next step is. My Vitamin D levels will be monitored closely - my doctor has assured me of this. She did say that the general rule of thumb is to prescribe Vitamin D for a period of time and then leave it to the individual to get on with it themselves. She also said that they are still learning the full extent of what amount needs to be given and how long recovery will take.
The day the doctor in the Pain Clinic told me I had Fibro, I sat there and said to him "I don't believe it exists and it is a label you give to people when you cannot be bothered to find out the truth as to what is going on". How right I was.
Onwards and upwards as they say!!
It normally takes at least three months to show an improvement in vit D readings. I was 26 and am now 72 after taking supplements, so they do work, although I do lie out in the sun with a cup of tea. I bought rather a super French gravity sun chair which is great.
Hi. What kind of tests are they doing to assess the damage? I have the same level - after two months on 60,000IU D3 a week I feel less run-down but still have the same joint pain that took me to the doctor in the first place. I never really had what I would describe as "bone pain"; it's more specific than that.
what other blood tests are you having done? your gp sounds on the ball, mine did not care that my level was only 25 , it turns out i have high cortisol and this sometimes does not let the body absorb vit d, i have a referral to a endo x
what dose are you on, my gp gave me 800iu for a level of 25 which i think is too low, but he said it was fine x
MY GP was very cautious at first and suggested 800iu a day, I went back after a month as I felt so unwell still. He had seen another patient with the same problems as me and was open minded and looked up recommended loading doses and I was given 20,000iu twice a week for 8 weeks and my levels slowly went to 54. It was summer time though, so I also sat in midday sun for 15mins each day. If you GP is being difficult, then you can buy vit d3 online and it's not expensive. I now self supplement and take approx 2000iu daily as a routine dose. I am so much better after being so ill- I had to take 3 months unpaid leave from my job last year, and have slowly improved. I am not 00% yet though, but try to pace myself and stay positive. I hope that this summer in Uk will be a good one and I will keep my levels up ready for the winter times.
i bought 2000 iu on line i will see how i get on x
My doctor has prescribed 3200IU per day for 60 days but she freely admitted that these are the guidelines they have been issued with and she knows the actual amount required will be more. She doesn't have a problem with the fact that I am taking extra in addition to her prescription. I have increased it to 6200IU per day and will increase it again after a couple of weeks. Too much is likely to increase the pain even more until I get used to it. I am having tests for a variety of things that have been flagged up in addition to the Vitamin D, but one of the other tests because of the low level, is to check that my Parathyroid is working correctly.
There is still so much to learn about this vitamin - although it is actually a hormone - and how it effects the body. I am now on a mission to learn as much about it as I can.
I am on 800iu daily too. It is important to take them with some sort of fat eg yogurt, to ensure good absorption.
Do be careful, you can take too much vit D. It is also a good idea to spread out the dose over the day as the body can have problems if taken all at once.
I've been liaising with the Vitamin D council and have been advised as to the best approach to this, so that I do not take too much.
That is very sensible. Hope the vit D helps, it can take at least three months.
A large British study on D3 was just released and it showed D3 has a cardio-protective effect. The study is named "VINDICATE". If it is combined with CoQ10, which has been clinically shown to help with energy levels and reduce muscle aches, you have a natural combo that helps strengthen your heart in addition to a wealth of other benefits. If you haven't considered supplementing with CoQ10, ask your doctor about ubiquinone and the renowned "Q-Symbio" study.
I've been taking CoQ10 for a while now and it does help. When I told my doctor, a few months ago, I was taking it, she fully supported it. Again, it was something that I looked into and know people who have benefited greatly from taking it.
My joints are incredibly painful and a few weeks ago I started with even more pain in my shoulders and hips. My bones quite often feel like they are made of glass and could snap at any point. This vitamin d deficiency lark doesn't half cause some grief!