Recently diagnosed with Vitamin D deficiency
Posted , 81 users are following.
Hi I have recently been diagnosed with vitamin D deficiency after years of pain and tiredness. I have quite a long history but have had surgery twice on my right foot. The first time was a straght forward bunion op and the second one I am now wondering if was caused by Vit D Deficiency as I was in so much pain after first op I needed the 2/3/4 metatarsals cuttings and replacing into different positions.
I also have Carpel Tunnel in right hand and been told I need surgery on it due to muscle waste, inflamed tendons and slight loss of sensation.
There isn't a part of my body that doesn't hurt and I am a 36 year old female. I am self employed and a mum (which can be very challenging with all the pain and tiredness at times!).
I have been prescribed pre d3 20,000 iu 3 times a week.
It turns out that I had a blood test in 2011 that showed I was low on vit d then so I have spent the past week battling between my GP and hospital to try get the levels and find out who did the original test and find out why nothing was done years ago for me. I am starting to feel fobbed off as no one is giving me a clear answer. The hospital won't give me the answers and told me they have to be faxed to GP which I asked for and after waiting days for this and chasing up twice the GP rang today to tell me they have recent blood test result which showed vit D below 30 if that makes sense to anyone?
They weren't sent the 2011 results so have had to chase up again!
I am concerned after having pain for years that this may have done damage. How long does it take to see a difference on that doseage?
My main pains are in lower right back, back right rib, hips, feet, hands, neck.
It would be great to hear from anyone else with vitamin D defiancy.
4 likes, 255 replies
deedee48216 k11990
Posted
I have been having the same pain on my right back on the ribs for the past 3 months after a long holiday from central Africa
First my GP said it was due to a lot of efforts at the gym,but was pushing him for more blood tests,and few days ago it tourned out that I had vitamin D deficiency and was prescribed some tablets which I take twice weekly
It's true the pain has been down for 3 weeks before the test but I still have some pain
Hopefully I will be fine soon
I just wonder what's the solution for this lack of vitamin as don't trust too much my gp anymore
Thx for any help
EileenH deedee48216
Posted
jen55110 deedee48216
Posted
Hi Deedee!
I hope you are feeling better. If not I noticed that your symptoms appeared after you traveled. You may have picked up something when you traveled. Did you do anything outdoors when you were traveling. It is a stretch to think the root of your pain is from Vitamin D deficiency in my opinion. I had the same experience and was distracted by the low Vit D and almost missed something far more dangerous & serious. Low Vit D is often caused by other things, so to focus solely on that may cause you to miss something more serious! It is still good to replace your Vit D but do not miss the root cause because of it. I will happy to help you brainstorm if you wish. God bless.
lisa93954 k11990
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Zubiedoo k11990
Posted
Omg I am so glad to find this forum. Here is my odd path to vitamin D deficiency. I am in the US and recently started having panic attacks. I attributed them to my boss who is a tyrant and causes others health problems. Prior to that, I have had chronic depression, dysthymia, for decades. Normally healthy but struggle with weight. I made a decision to change careers several years ago and started premed for physician assistant. Over the years of trying to do this while holding down a fulltime job, I changed routes to Nurse Practitioner.
In spring 2015 I had some additional family crisis and my heart started palpitations frequently. My doc shrugged it off as stress and put me on beta blockers. Beginning in fall of 2016 I started having panic attacks whenever my boss would threaten my career. He is a power freak micromanager and doesn't trust anyone. We have to continually prove the most mundane things to him in copious reports.
Throughout all of this, I had extreme fatigue, many sinus infections, migraines, scotomas (visual migraines), more weight gain, worsening depression, and generally just need to sleep a lot. I started barely keeping my home and life in order, bare minimum. Very forgetful and tough to concentrate. Also, tingling in lower legs and arms, sometimes it's on my face and sometimes seems to follow my entire skeletal structure. And tinnitus.
I requested a cardiac assessment as I had become short of breath on minimal exertion, and had recently finished a clinical rotation in a cardiac unit, and saw crises as well as easy quick fixes for patients with shortness of breath that turned out to be cardiac.
The cardiac doc said I am deconditioned and tired rom the extra weight. He was the 2nd doc to say this before any assessment. I requested a lipid profile as I was worried about vascular issues. ( I am not that horribly overweight).
That included a D test which came back at 16. Thank GOD now I had something fixable. Many of my symptoms could have been deficient D all along.
GP put me on 2000ui daily, but my pharmacist questioned that as too low. I am now on 50,000 ui 2x per week for a month, then need to drop back to 2000 daily. Although I plan to drop back to 5-7000 instead. I want this over with. I can barely hold down my job and they are losing patience. They also have no sympathy and don't take my medical issues seriously.
Looking forward to relief, although this is my first week of treatment and the first blood recheck is in 3 months.
Zubiedoo
Posted
jen55110 Zubiedoo
Posted
Hi Zubiedoo!
I feel so sad for you! You mentioned you are taking Vit D supplements now, but has that resolved your symptoms? I am guessing NO! If not you may want to seriously consider what I feel compelled to share with you.
You have many symptoms that can be the result of borreliosis. That is a type of bacterial infection ( Lyme, Masters Disease, Relapsing fever...). There are also coinfections that tick often have that cause many of your symptoms. Most doctors, although very smart in their fields are very uneducated in Borelliosis. Sadly, they just do not understand about Borreliosis until it targets them. Most doctors fail to diagnose when it comes to Lyme because of lack of knowledge or fear of getting into Lyme politics. Regardless, those with mysterious random symptoms are left feeling helpless and alone.
My medical concerns for you are that you are having cognitive problems. Many Lyme pts report feeling like they are in a "fog". Fatigue, tinngling & Tinnitus are huge red flags for Borreliosis, the Lyme causing bacteria. The bacteria can affect your heart & cause panic attacks to name a few of 100's of symptoms. In Borreliosis, many people also have decreased Vitamin D. Have you had a Borreliosis test? Most patients with Lyme & coinfections have worsening symptoms that come & go. You need to see a Lyme Specialist so you are not dismissed. You are a smart girl. Go to ILADS ( not CDC) & research what I am telling you. You can request a doctor from ILADS. Please let me know how you are doing. Hang in there. God bless you!
lia57772 k11990
Posted
Hi ya k11990
I've just been diagnosed with a vitamin D deficiency after the last 6 month of suffering with loads of leg,arm,hand, hip, knee pain. This come on rather sudden, was really fit and trainned all the time and suddenly the pains will not go away. I have had so many blood test and everything is normal, I've been checked for every auto immune disease possible. It's been a really tough time I'm a working mum with a daughter and now the summer holidays are looming😢 My levels are 60 and my doctor wants them at 90-100 but I'm wondering if I'm depleting it in some way. No one has the answers and every day is just struggling. I want to see if I can get the jab, rather than tablets as they are really not great on my tummy. Hope this helps would be nice to talk to someone that is going through the same thing xx
LyLy lia57772
Posted
Lia,
It's important to know why you are deficient in vitamin d. Either you're not getting enough sun or its a parathyroid issue. Doctors focus on thyroid and often ignore or over look the parathyroid. I am going through the same thing as you.
10 months and not a big improvement on symptoms and every test comes back normal. Until a friend told me to get my parathyroid tested. The symptoms are very similiar to vitamin d deficiency.
I am waiting to see my doctor and hopefully finally finding the root cause of my symptoms.
jen55110 lia57772
Posted
Hi Lia,
Your symptoms concern me! You may have Lyme or a co-infection!!!! Your joint and migrating pain that they cannot diagnose is not from decreased Vitamin D. I bet you are exhausted too. You need to see a specialist! You have seen doctors; however, many doctors dismiss tick illnesses. To make matters worse, even if you get a doctor to do a test, they are highly inaccurate! They will tell you it is a "false positive" and not treat you. Then you will suffer and your health will further decline. Many states claim to not have Lyme & other tick illnesses which is almost always untrue & misleading to the victims of ticks. Your health is priority here and it is unlikely that a Vitamin D of 60 is causing your symptoms. You need to see a doctor that specializes in Lyme & other tick diseases. They are called LLMD. Google ILADS (not CDC) for accurate information. You can request a Lyme doctor from them. I speak from direct experience. This happened to my son. His Vit D was 12. I went to a LLMD and he had Lyme and a co-infection. He is currently being treated. This experience opened my eyes to an extended family member who has had various medical problems over the past decade. Lots of pain and fatigue. He has seen 21 different doctors in search of help. Nothing and no one has really helped him. My son got Lyme and as I read more about it, I realized it sounded like this man. He saw a LLMD Monday and has Lyme, Babesia and Bartonella. 21 doctors and it took my son getting Lyme and suggesting he get tested. I happen to read you post and feel strongly that you should see a specialist! Please do not wait too long.
P.S. Many people do not remember seeing a tick. They can be sesame seed size. Not everyone gets a rash. It is called erythema migrans and often does not look bulls eye!
lia57772 jen55110
Posted
Hi Jen
Thanks very much for your advise. I've been seeing a rheumatologist/physician for the last six months and I've had every blood test out there, and all she could find was low vitamin D levels, and I had every test going for autoimmune diseases all of them! I have been told about Lyme disease, which I am going to see a specialist at the end of August who is a bio chemist who speclises in infections and diseases. Unfortunately got to wait until the 29th August. I do take in a lot of sun, but haven't had a sun holiday for a good few years, when I did always have one, but I do feel it must be depleting somehow not sure how?!? Thanks for your advise. Only been taking bit D supplements for a few days so not seen any difference yet, but hope it may help.
lia57772 LyLy
Posted
Hi Taro
Not to sure what to say, had a thyroid test obviously not the same. Is this just a blood test I can ask for? I've seen a rhymatologist for last six months and would have thought she had done these tests.
Feeling really sad and low at the moment.
😢
mike92384 lia57772
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lia57772...it will take more than just a few days to realise the difference when taking Vitamin D supplements.Vitamin D is very slow to accumulate in the body. My pharmacist suggested Vitamin D3..it's better.
I'd suggest you start with 1000 I/U daily. Then if the numbers are still slow to climb, then the units can be increased. Don't take too much though. It can be toxic.
My level has increased by 4 points in just 3 months, which isn't a lot, but it's climibing just the same. A few weeks ago, I was at 74, just one point below the cutoff, but my Dr. wasn't at all concerned.
EileenH mike92384
Posted
1,000 IU is barely more than the amount used by the body per day - which is why it is so slow to accumulate.
LyLy lia57772
Posted
Hi lia,
Yes it is a blood test called PTH, it tests your parathyroid hormone. Primary hyperparathyroidism is more serious but less common. It's good to ruled it out.
It causes low vitamin d, it's the body's way of preventing the intestine from absorbing more calcium. The body is protecting itself.
mike92384 EileenH
Posted
Hello Eileen H...thanks for your input. I think the key wording in your note is "seriously depleted". When my lower level of Vitamin D was discovered, it was in the mid-high 60's...not that bad. It was considered INsufficient, rather than DEfficient. My Dr. told me he has some patients in the mid-20's as their score., so I certainly wasn't in a bad way as far as the Vitamin D was concerned. As I've written a day or so ago, my score a few weeks ago was at 74, just one point below the cut-off., but I'm sure it has climbed a little since then.
I shall pass on your information to others, including my Dr.
EileenH mike92384
Posted
Exactly - and my husband's was in single figures! But he had no symptoms except high blood pressure - which has fallen now the level is more like 70.
I live in northern Italy, at the latitude where technically we can make vit D in skin all year round, not just in summer. I don't use sun screen day-to-day and am outdoors a lot. Still was depleted a couple of years ago - not as bad as my husband though - and about 80% of the population is low on vit D. The local osteoporosis expert recommends 2,000 IU as maintenance dose for everyone.
jen55110 lia57772
Posted
Hi again Lia,
I have been thinking and worrying about you. Like you, my energetic son, was stopped instantly by mysterious symptoms. I was grateful to have him diagnosed with a Vitamin D level of 12. Unfortunately, this was not the root cause of his exhaustion. I am an RN and a mom. I knew enough to know that Lyme needed to be checked amongst other things. The doctor reluctantly did an ELISA and Western Blot test stating it was a "waste of money." A week later, he told me everything was normal except my son had a " false positive" for Lyme. He would not treat my son because "we do not have Lyme in our state." My son, like you was extremely fatigued. He had to drop out of school. It was truely life altering. I started researching Lyme and co-infections extensively at that point. A week later, we were out of state with a Lyme expert. He was positive. It is possible to have a lower Vitamin D level because of Lyme. Vitamin D deficiency is NOT the cause of your problems.
I am glad that you are being tested for Lyme. However, it is imperative that the correct tests are done. ELISA & Western Blot are not that accurate. Many " false positives & false negatives." IGENEX Western blot is the best. Get a copy of your results. Do not take someone's word for interpretation of the results. This is not like a pregnancy test. The doctor you are seeing, needs to follow ILADS not CDC guidelines. This will better ensure proper diagnosis and treatment. It is widely thought that CDC guidelines are a joke in diagnosing and properly treating people with Lyme. You can call and ask this doctor which guidelines he/ she follows. If they Do not follow ILADS, I strongly suggest you go to ILADS website & request a doctor in your area. Many doctors are ignorant about Lyme! My brother- in- law has seen 21 doctors in the past 10 years. One of them was a rheumatologist who did a Lyme test 9 1/2 years ago and told him it was negative. He has suffered lethargy, pain and various mysterious symptoms for 10 years. After reading about others similiar stories, I called and told him he needed to get checked for Lyme. He went to an ILADS specialist and tested positive for Lyme and 3 co- infections.
The point of my story is that your symptoms are all too familiar to me and no one has diagnosed you with anything concrete. This is very common with Lyme. My brother- in- law's rheumatologist wasted 10 years of his life and allowed the disease to progress. 21 doctors unsuccessfully treated him. You are a young mom, you cannot afford to go through this torture unnecessarily. Please research this and you will see why I am highly suspicious that this could be the root of your illness, and it is extremely important to rule it in or out as soon as possible. Many do not realize this, but Lyme is more common that breast cancer. I hope you get answers soon. God bless you!
LyLy jen55110
Posted
Hi jen,
I just had the western blot lyme test and it was negative. After reading your post, I'm a little concerned that it just might be possible that I might have lyme.
If you don't mind me asking what were your son's symotoms and what were the early signs. How did the doctor treat him?
Thanks in advance