A question for the ladies...: Please can anyone... - LUPUS UK


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A question for the ladies...


Please can anyone give me some advice, I have been feeling unwell for the past 4 months (my gp thinks lupus and I have my first rheumatology appt this week) and in that time I have had 3 menstrual periods that have been very heavy with lots of big blood clots. I have read that vitamin d deficiency can be a cause and I have been on supplements for 2 months now. But could this be due to lupus? (As yet I am not on any lupus medication) and would this problem be of any interest at my rheumatology appt. or should I consult my gp?

8 Replies

If you have anything "different" about your periods - do discuss it with your doctor.

My rheumatologist regularly tests my vit D levels...I'd mention this to my gp now...and definitely ask Rheumatology about this!

E.g. At rheumatology recently, my chief of lupus clinic surprised me by insisting on discussing the fine detail of the Pelvic Multidiscipline Investigations I've been under for over a year now (under urology, gynaecology, gyn oncology & now gastroenterology). My impression is that a truly lupus-expert consultant wants to know about this sort of thing

Please let us know how things go

🍀🍀🍀🍀 coco

bexxy in reply to Barnclown

Hi, thanks for the reply, it just feels like there are so many varied symptoms to discuss and I wanted to know if this was worth mentioning. I will talk to GP before my Rheumy appointment. Obviously if it's related to vit d deficiency then my 60000iu a week supplements are not having much effect! I am having vit d rechecked next Monday so perhaps that may shed some light on the matter. Fingers crossed I will get some informative diagnosis at Rheumy appt on Saturday and then some Meds that might get me back on track to normality whatever that is.....🤔

Hi, I can't say for certain that the bad bleeds are caused by lupus, but I have been informed that my dysfunctional uterine bleeding may be being exacerbated by my mctd diagnosis. I would 100% mention this to the consultant and to your gp as if the last three bleeds are a significant change for you a Dr should be aware. You could also ask them to check your platelet levels. I have ITP which means low platelets and I have terrible bleeding and bruising. I would also aka for your iron to be checked.

I'd be very interested to hear what happens following your appt, please feel free to message me if you want to talk more x

I had no idea my vitamin d levels could have been the cause of that. I used to get hideously bad and surprisingly large blood clots every period and for that week and the week I used to ovulate I would always flare and get really bad right sided pain. Investigations never found a cause for the pain so in the end gynae fitted a meriva coil to fix the issue as I was spending something like 3 weeks out of every 4 really ill because of it. I now haven't had a period for I think it's 4 years now - dreading when they take it out the end of this year and I have to decide whether I get a new one. This one was put in under anaesthetic while doing investigations so was totally painless!

If this is new for you then as others have said you should definitely get it checked - isn't automatically lupus and could indicate fibroids for example. Good luck

Just a thought. When I go to dr I spend 3 days drawing up a list of problems to take with me. When you have one or many autoimmune diseases the little things you have can be pointers to a larger problem. The dr needs to know everything that's happening so they can build a better picture 😘

bexxy in reply to CRYSTAL11

Hi, thanks for the reply, I spoke to my gp the other day, but as I have my first rheumatology appt tomorrow, he didn't seem that interested...anyway will attempt to mention this at my appt tomorrow... But don't know how long I'll get to list my many symptoms. Hopefully a diagnosis is in sight and then some help with medication. Will also be getting bloods done on Monday, so will see where the vit d supplements have got me...

CRYSTAL11 in reply to bexxy

Good luck with all that. Hope you get somewhere xx

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