I have been so very very lazy in doing the next instalment
of my Journey
of UCTD. Well this time the delay was not due to ill health but because I
was a little better and was catching up on chores and also spend a few hours on
a beach. It was so nice to feel the warmth of the late autumn sun with wide
blue skies and rolling waves. I had heard about Curl Curl beach from a friend
so we decided to visit the place and also the nearby Dee Why beach. Of course
one cannot go to the beach and not walk at the edge of the water, wet our feet
and have hot hot chips, even if it meant resting for the next day or so.
Well the weather has turned wintery now and am desperately
trying to keep warm. So time has come to continue writing. What shall I tackle
next? I want to talk about the specific drugs as a separate single blog so maybe I should
continue with other symptoms. Oh yes! Just like vitamin D deficiency was identified
by chance so was the lowered Hb (haemoglobin). Normally I have an Hb of 12 and
suddenly it was down to 9. I was feeling tired and run down, getting breathless
with walking any distance and of course the stairs in the house needed girding
of the loins to use. But I had not paid any specific attention as by now I was
not even able to distinguish symptoms from different issues. Anyway why would I
get anaemic?
Well if I had bothered to look a little more closely at the
side effects literature for ibuprofen I would have seen that it can lead to
anaemia. Of course my GP wants to give me oral iron tablets. I pointed out that
my stomach cannot handle the usual iron pills. I get sever gripping pain, sinking
feeling and nausea within minutes of taking the tablet. So it was decided that I
should have some liquid iron preparation. Now I cannot remember the brand name
of the first one I tried. 2 teaspoons every day was the prescribed dose and I found
that after taking it for 2 days my stomach started hurting. I took a 1 teaspoon
a day and even so it was not a nice experience.
Went back to the GP and complained so I was given another
brand to try. This one was even worse. It felt as if I was drinking paint stripper…….
I could feel the mucous membrane burn as the liquid touched it. So went back to
the GP as there was no way I could take this preparation. I even suggested that
injections would be better. But for some reason only known to himself, he
refused that and said just take the earlier prescribed liquid iron preparation
as and when I could. I am not sure how helpful a teaspoon every couple of days
would do to raise the iron levels. The drip feed raised the Hb to 10.5. Oh yea
I had 5 vitamin B injections just in case the iron was not being absorbed.
When I came to Australia and settled into life here, my new
rheumatologist got the whole blood panel done and found that my Hb was lower
than my normal but the ferritin stores were much depleted. (I do not think my
ferritin levels were checked in UK) Again the same conversation re oral iron
prescriptions….. ahhhhhhhhhhhhhh. This time I refused to even try any oral
medication. He said well it will have to be injection and they are painful. They
can cause staining of the skin around the injection site. I said that will be
minor discomfort compared to the agony of drinking acid.
So I had 10 X 5 ml injections over a period of year and
brought back the levels to normal. Now it gets regularly monitored to make sure
the levels do not deplete. There was some concern that the problem lack of iron
could be due to poor intake and or poor absorption of it in the small
intestine. The Gut men just wanted to go on a fishing expedition in my lower
GIT and I said no way. This was in UK and I asked how it was supposed to go up
if I am not able to take the medication. How can they even begin to suspect a
problem in that case? Well the other one they mumbled about was … oh you might
have a GI bleed….. I firmly refused saying give me the medication and if the
levels do not rise I will agree to further investigation. Thankfully with the
injections the story took a positive turn for this aspect.
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