I haven't written for a while as I finally got referred to an endocrinologist after seeing a different doc at my surgery and wanted to wait for the outcome of that. This GP had looked at my blood tests and disagreed with her colleagues in the practice that the tests were 'in normal range'. She said she was particularly concerned about my thyroid, phosphorous and calcium blood test results.
So my appointment at the hospital arrived - 30th September and to be honest there were a lot of really ill people in the waiting room. Having read so much about thyroid disease I could actually see some of the facial features, goitres, Graves etc for myself.
My consultation lasted half an hour and I was thoroughly checked and was asked how my symptoms were presenting and how they affected me. I felt the consultant listened. He said my GP blood tests were bordering on hypothyroid ranges and that he would run more blood tests and see me in three months time.
I felt I was no further forward and asked was it fair that I had to wait another 12 weeks until I got treatment. I was almost in tears and he smiled and reassured me that he would wait for the blood results then ring my surgery by the end of the week suggesting any necessary treatment.
He added that he would give me a trial of thyroxine, based on my original test results either way, but said that if I did not feel better taking the trial I had to be honest and come off it. Which was fair comment. Nobody wants to be taking unneccessary drugs. He carried out a full blood profile as well as the TSH, T3 T4 and antibody test. In hindsight I think he suspected what was wrong with me without these tests.
Two days later I got a call from my surgery. I was to make an appointment ASAP. When I got there my GP told me I had a severe vitamin D deficiency and was diagnosed with osteomalacia - softening of the bones caused by lack of minerals being laid down. My phosphorous and calcium levels were also very low.
This was the cause of my all over body aches, muscle and bone pain. More than likely because of the vit d deficiency, calcium was entering my blood stream and causing deposits to adhere to joint tendons in shoulder (I have a frozen shoulder) and around hip joints (probably the cause of my pain there and in knees).
Osteomalacia causes difficulty in stair walking and getting up to a standing position from low chairs etc - one of my main symptoms! It also causes severe muscle weakness. No wonder I can't function.
I have been prescribed with 60,000iU of Dekristol taken in a single dose, once a week for 12 weeks. In addition I was advised to take phosphorous, magnesium, cod liver oil and vitamin K2 to try to restore my depleted vitamin and mineral store (cheaper over the counter than on prescription).
Although I was shocked (because I consider I have a healthy diet) I felt relieved something had been diagnosed - but really annoyed that I had not been tested for vit d deficiency years ago - because this had been going on for some time.
I have read up on vit d and its role in the body and apparently its a hormone not a vitamin and linked closely to T3 and 4 as well as other hormones in the body. It plays a very vital role in good health. Diet makes very little vitamin d so it is essential all animals expose themselves to the sun to manufacture it. This is why it has been called the sunshine vitamin for years.
It seems I have been my own worst enemy. I'm scared of getting skin cancer, so I never sunbathe, always wear a high factor sunscreen and cover up when I am outside. My job means that I spend lots of time indoors and I have become deficient by not exposing my skin, for a short period of time each day in summer, to sun rays which convert to vitamin d through the skin to keep my supply constant.
I hate dairy products but have now been drinking shakes with a pint of milk, whey powder and fruit in them (yuk), yoghurts (bearable), Swiss and parmesan cheese (nice) and lots of eggs each day to raise calcium levels too.
I had cut right down on the fat in my diet and dairy was easy to give up because of my aversion to it. I was getting low grade calcium from veg and other sources, but fat and dairy is essential in the diet it would seem.
So since changing my diet (not restricting calories) and taking the supplements I have started to improve. First of all achilles pain has just disappeared. Although not great the tendinitis in my hands is improving, but the big difference is I am not starving all day and binge eating in the evenings. The milk intake in the morning is supressing my desire for high calorie snacks. I am thinking my meals through properly and as a result, without even trying, have lost half a stone in 16 days.
I am sleeping longer and can walk up and down stairs one foot in front of the other which has amused my husband! He says I have a spring in my step - which I hadn't noticed. My thigh muscles are shot though and I still can't rise from a chair or crouching position without hauling myself up with my arms (also weak).
I have read so much about vitamin D I can understand what is going on with my body now and why I have been so run down. Osteomalacia is reversible.
I still have thyroid symptoms, which are not related to vitamin d deficiency i.e. dry skin, hair and eyebrow loss, so when I go to see consultant at the end of December I will discuss doing the thyroxine trial, but if I am going in the right direction and feeling better by then I will just keep on the vitamin and mineral regime (it can take up to 6 months for bone and muscle to recover) to try and regain better health.
It's a light at the end of the tunnel at last - and that alone is a BIG relief. I hope the example of my persistance pays off for the rest of you who have similar symptoms and perhaps it might be worthwhile, if you haven't already had one, to ask for a Vitamin D and calcium level blood test.