Like most people, I, Louise, grew up knowing vitamin d is needed for strong bones. But it wasn’t until around 2012 that I realised just how important it is for everyone’s general health, especially people with long term health issues like Emily. The reason why we write this post, is to tell our story with vitamin d so far, in the hope that it will alert people like you, to its importance. With a bit of knowledge you can prevent having a deficiency and be the healthiest you can be. Our belief is that prevention is always better than cure. However, it’s better to know the truth once there is an issue, to enable the best possible chance of being well.
Now at 20 years old, Emily has been on anti-epileptic medications for 14 years for epilepsy. One of her medicines, Tegretol Carbamazepine interacts with vitamin d absorption. Unfortunately, the hospital consultant never picked up on this and over time, Emily’s vitamin d levels became very low. I had read somewhere that people on medications need to be tested. I’m so thankful for the information as she was lost in the “System.” Since then, Emily has been on vitamin d tablets of varying amounts. Because of Emily’s health issues (Epilepsy and NEAD) many of her days over the summer and especially winter were indoors, so she wasn’t getting any daylight. It all came to a head in December 2015 when she was in so much pain in her joints, she could barely walk or move. In addition to having seizures, it became too much to bare. With my prompting, the doctor tested her vitamin d levels and she was dangerously deficient and had to go on very high levels of vitamin d tablets for over 6 months to recover. The doctor said she had osteomalacia, a condition similar to rickets in children, which causes severe bone pain and muscle weakness due to vitamin d deficiency. To say we were shocked is an understatement. How on earth could it have happened? One dangerous step at a time…that’s how.
Emily has recovered, but is still on a high dose of the vitamin (higher than her doctor has given her) as we don’t ever want the condition to return. Due to her conditions affecting her everyday life, the lack of daylight as well as the depletion due to her epilepsy medication, we need to make sure she gets what she needs. Whenever we reduce the dose, we see her aches and pains come back and depression becomes more prevalent. She has her blood tested every few months so we know how she’s doing.
Every year, I struggle with SAD over the winter months and feel very low. I have found since taking vitamin d supplements I am brighter and more able to cope with dark days and days I’ve had to stay indoors because Emily is unwell. You might be thinking, oh well that’s ok, I’m not on epilepsy medication, I don’t struggle with SAD or depression and I get plenty of sunlight so I’m ok. But are you? One way to make sure is to get your blood tested. It’s just a simple trip to the doctors and not too much trouble. You see, it’s about so much more than bones and joints.
Did you know…
1. Vitamin d is more like a hormone produced in the body, with far reaching affects, influencing metabolic pathways, cellular functions and the expression of myriad genes.
2. Major vitamin d deficiency is the most common medical condition in the world, affecting over 1 billion people.
3. Symptoms of vitamin d deficiency are fatigue, muscle pain and weakness, chronic pain, weight gain, poor concentration, and headaches.
4. Vitamin d deficiency has been shown to play a role in almost every major disease eg. osteoporosis, cancers, heart disease, diabetes, multiple sclerosis, rheumatoid arthritis, depression and seasonal affective disorder (SAD).
Do you recognise any of the above symptoms? Get your blood tested just to see whether your levels are fine. It’s definitely worth checking! Especially as we can’t get our daily requirements from food alone. We need moderate, safe exposure to sunlight, and the amount varies depending on age, body weight, skin colour and any other health issues.
We hope you have benefited from learning more about our personal story and the information we have shared. There is so much more to know and learn. Information on the NHS website is limited, and to be fair, our doctors admitted to not know much about vitamin d and are only just beginning to find out more! Therefore, due to lack of good information, and poor estimates of amounts to take, I have looked elsewhere at some good information that has helped us understand better what we need to do and why.
Further resources/ information:
- Kris Carr ( Frank Lipman)
- The Vitamin D Council
- Philip Day ( Credence.org )
- Dr Mercola (Mercola.com)
All our love, Emily & Louise X