I left my journey of UCTD the last time at the point
asserting myself with my doctors and getting some examinations going. I must
say at this point I was very much of the mind that this is going to be some
form of autoimmune thing since I have become increasingly allergic to so many
things over the years.
I am very careful with getting my repeat prescriptions well
ahead of empty pill pots situation. In UK one has to put in the request at the
doctors’ surgery and collect the prescription the next day. Now I was with a
surgery in the next city (I used to live there and did not move to local
doctors as I liked the ones I had there) I waited for my husband to have a day
off and went over to hand in the request. I could only get there next evening
to pick up the prescription and I was told it did not get done and my doctor
was not around to fill it up. I would have to see a doctor if I wanted to get
my Ibuprofen. After some arguing I managed to get in to see the locum doctor as
she would not just fill in a repeat without seeing me first.
Now this turned out to be actually for the good as after going
through the medical history she asked if I had got my Vitamin D levels checked.
Apparently this was a hotly discussed topic at the latest medical conference (2007)
she had attended. She also identified that some of the symptoms were a part of
vitamin D deficiency. So I came away with a prescription as well as a lab form
for Vitamin D testing. When I next visited the rheumatologist (yet another team
member) I was told that I had got very little Vitamin D in my body. He
suggested that my GP should organise my Vitamin D injections. When I spoke to
my GP they said no it should be the rheumatologist’s responsibility.
Well after the arguments going back and forth I got a prescription
from my rheumatologist and walked or should I say hobbled, to the hospital pharmacy
to get it. Now I always tell the pharmacist that I am allergic to soy so that
they can check the medication being given to me. I got the medicine and went
home to have the new pill. After a little while, I was reading the drug
information leaflet and find that OH DEAR! There is soy in the tablet. (Apparently
most Vitamin D has got a soy base) I at once had my antihistamine just in case,
as with feeling ill anyway there was no way of saying if I was reacting or not.
I did cause a real flutter in the hospital when I rang and complained. I was
asked to return the next day as they would organise a new prescription for me.
I was also recommended injections to boost the levels faster
but unfortunately there was a delay to obtaining it from the manufacturers. Meanwhile
the dose given was minute – 0.25 mg to be raised over a month to 1mg. I find
this very contradictory as on one hand they were talking about giving me
300,000 units per injection but orally they did not want to give me appropriate
dosage. Around this time I found that having a GP in another city was not particularly
helpful as I was finding it difficult to get myself to the surgery. I moved to
the local one and spent a long time with the first GP I saw and explained the
situation as it was. I also gave him articles about Vitamin D deficiency so that
he could increase my prescription to 1 mg a day. I am not sure what he thought
of me but seemed to smile and nod his head in understanding and I expected to
have the medication upped with the doctor to have read up on my issues. Ah well
we live and learn as I think within 5 minutes of my leaving I had also left his
mind.
So the next visit I got the next GP in line and this guy was
actually interested in me and my problems. He carried out a full physical examination.
He checked my blood results, made notes and generally made me feel as if my
care was important to him. Around that
time the pharmacist informed me that the injections were now available and so
made arrangements with the GP nurse to get three injections over a period of 3
months. I do not know what I was hoping for but it actually made little difference
to my symptoms at the time. I think because the level was so low and even after
the injections it barely came up half way to the lower limit. I continued oral
Vitamin D 800 IU and calcium and blood tests showed a slow creep upwards. It
was actually when I came to Australia and the rheumatologist here said that is
not enough and set me on 2000 IU a day that the blood levels came up to just
over the lower limit. I am sure that contributed to the eventually stability of
my health and I continue to have it every day.
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