Sticky Blood-Hughes Syndrome Support
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Shock at the doctors today

I have been very naughty and not signed in lately so how bad am I doing it when I have had a shocking day.

I have osteopenia so was at the GPs for my calcium supplement to get started. Also I was getting bloods back that Prof Hughes asked for. Well my vitamin D I'd very low, that's a shock, my anaemia is worse, another shock.

I knew I had felt very weak, tired and breathless lately but I thought my body had adapted to anaemia so thought it was stress or menopause. Seems not. Then the biggest shock as an after thought she did my BP and it was 176/92 wow and I always had very low BP, plus she's testing for diabetes due to my numerous loo visits. She's concerned the steroids are taking their toll already.

And if that's not enough my tinnitus has gone up a gear making it impossible to relax. Feeling fed up.

9 Replies

Hi Jade

Did she take you BP after giving you the shock results? If so, I'm not surprised that your BP was high.

It may be worth you buying a BP home monitor and doing a set of readings, say 3 - 4 times per day for a month and seeing how these look.

Best wishes.



I hope things calm down a little for you, let us know how you progress with the various levels being brought up again! MaryF


To be honest Dave I was surprised by my vitamin D and iron, but no the BP was an after thought after I told her it was high when I saw a Prof Hughes in Feb. she was just checking. I was actually quite relaxed with her and I get on well with her and she gives me most things I ask for, as she knows I do my homework so to speak. So actually the result is my shock, we tried both arms, I relaxed and even stopped speaking as she said it was very sensitive.


Hi Jade.

I had low Vit D and now I take one 25 unit tablet a day my Vit D is bang on target.

Good luck and keep in touch.



It can be so frustrating when various health issues raise their heads and even more so when we get a run of them together. I guess the good bit is that the vitamin D and iron levels are relatively easily fixed and good that you found out so you can do something and feel better :-)

Hopefully diabetes is not the issue. Constant trips to the loo don't always equal diabetes. I thought that might be the case with me as I'm up and down all night to the loo but the diabetes test was negative. I am a prime candidate for it though having had gestational diabetes. Always worth checking but its not a done deal. I have everything crossed for you that it is negative.

I think low vit D and iron are common amongst us folk so you are in the very best company :-)


Sorry to hear that you have so much to cope with at the moment. Hope this is now being managed.


My tinnitus goes wild when I am anaemic/BP high too. Also get a heart beat sound in my ear too. Good luck and I hope you are feeling better soon


This all sounds uncannily familiar to me at the moment! I'd be very interested to know what your GP says about it all.

Good luck, Jade.



My tinnitus gets worse on those same nights when just sleeping on my back causes the surface vessels on the back of my head to go "to sleep;" which is also on days when my INR is below 1.75. I inherited my Mom's white noise machine and it helps wonderfully with the tinnitus at night. Of course, I just have to try to ignore it through the day, but since I've had the ringing in the ears since I was 7 or so I'm usually OK with the background noise during the day. I've noticed that when the outside temp is low and the inside humidity is also low (gas furnace) the tinnitus is worse. I pour a tad of hydrogen peroxide into the ear, cock my head and swish it around, then cock it again to pour it out. That helps. (And I know when that wax has gotten too hard from the dry conditions: the peroxide begins to break up the wax which is an amazing snap cackle and pop sound.)

Sorry about all the shocks. Hang in there. I'm confident you'll treat and adjust.


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