What an absolute few months I've had. Have been on a constant heavy period, where I'm losing blood clots for the past 5 months, plus having really bad issues with breathing, which added to all my comorbidities is an absolute bugger. Due for a chest x-ray and an ultrasound this week. Then to top it all off, rushed to A&E last week by my GP due to my INR hitting an all time record high of 8 (any higher than 4.6 and I tend to bleed into joints and muscles) with severe stomach pain. GP worried I was bleeding internally (have had extensive bowel surgery which has left my with a very weak and fragile bowel). All sorted now but totally flummoxed to how my INR doubled in the space of a week. No, it was nothing I'd eaten, drank, taken (been on warfarin for 30 years so an an expert now in what effects it in my case). Has anyone else experience such an erratic leap in their INR with no cause that can be determined?
It Never Rains: What an absolute few... - Hughes Syndrome A...
It Never Rains
Sorry to hear you’ve been having such a difficult time Sher78. I can empathise with having a bit of a complex case. I’m very often told by GP’s etc that they can’t really advise me as my scenario is too complicated. I have had pretty high INR readings over time, and can be quite erratic in this respect, but nothing like the spiking you describe. I really hope you manage to get good guidance and care and get it settled down in the short term.
I have however suffered with extreme Menorrhagia to the point of needing a blood transfusion several years ago and having to take Tranexamic Acid to control. I have been on Warfarin for 11 years since the diagnosis of a PE and DVT (no reoccurrence to date thankfully). Since taking Warfarin I have always suffered with my periods , and this has only worsened since I developed a fibroid over time. There is now talk of endometrial ablation after trying multiple other things, or worse case hysterectomy.
Thank you for being brave enough to raise the subject of vaginal bleeding. I feel like no one really talks about this or understands it yet it can affect one’s quality of life massively. It is certainly the biggest issue I have with the Warfarin, and I feel many women who have to take Warfarin must suffer similarly. It feels good to talk about it!
Hope you get a positive resolution to the high INR soon. You have a lot going on there but it sounds like you have a positive outlook which is essential. Best of luck!! 🙂
Thank you for your reply. Sorry to hear you've had a bit of a time too. As I said, I have been on warfarin for 30 years and it has never affected my periods before (aside from a few heavy bleeds over the years but they were very few and far between, plus the fact I also had a couple like that before I even went on warfarin) so I can only think my age is possibly playing a factor in it at the moment and have spoken to hemo & he thinks it's very strange as well. I am on the mini pill but am currently permanently taking Norethisterone (until they can get to the root cause) so I don't bleed at all. Also, been on iron for the last 18 months (my body can't retain it, thought to be caused by all the surgery on my gut) and although not anaemic, I'm only just in the 'acceptable' level. I am hoping that the ultrasound sheds some light and that if needed, an EA is what I'll be offered (don't really fancy a hysterectomy, can't be going through all that as well, plus I'm not allowed to take HRT either so they can leave that well alone 😂). In regards to the high INR, I think I'm going to have to discuss it with Hemo as my GP's don't have the faintest idea on complex issues (sad when you have to actually tell the GP's when you need clexane and when you need vit K), I'm positive they dread it when they see I'm their next patient 😆
Lol, last time had my INR the health assistant quipped to a colleague, welcome to the surgeries most OOR patient. I said excuse me but what does OOR mean? Out of Range he said. Charming! I am only out of range because they wouldn’t accept the range my specialist suggested!
I tried the mini pill but it just made me worse, and Norethisterone was the reason I ended up needing a transfusion. Seem to be going in circles with it all at the moment but hope to get a resolution soon. Best of luck with the ultrasound. Hope you get closer to a resolution also.
I highly recommend the ablation. It was the best decision that I ever made. Do not be fearful of it. I’m happy to help with any questions.
Thank you. I was supposed to be having the ablation last Tuesday but they found my fibroid had increased in size so they will need to remove that first. They couldn’t do it on that day as they would have done normally because of the Warfarin. Frustratingly this means referral for a further three appointments before getting back to the same stage.
Good to hear that it worked for you. Can’t wait to have it. To be honest I guess I am in a tiny minority of those women that literally can’t wait for the menopause!!!
Thank you and the same to you 😃
When first diagnosed I was put onto warfarin, my INR was so erratic, too high one minute and taken into hospital many times for suspected bleeding and really low another!I was sent to dieticians, special clinics etc, I was totally put at fault.
Then after 3 mths my heamatologist said I'm not surprised your triple positive - been on clexane ever since.
10 years prior to diagnosis I had a hysterectomy for heavy clotting bleeds I was 'on' for 25 days and only dry/normal for 3-5 days - horrendous time.
Hope you feel better soon
I am safely on the other side of the monthly dramas I once had to endure. I'm sure science has only scratched the surface to understand that the complex interchange of metabolic hormones Especially in women! I went from constantly anemic through childhood to horrible monthly bleeding as a teen, to 2 fairly " normal" pregnancies and then, a toxoplasmosis diagnosis after DVTs and a platelet count of 800+. I was put on warfarin, with a lot of warnings about how dangerous it is. But my body seemed to love it! The DVTs stopped, I had more energy and my platelet count returned to normal. After about 10 years on warfarin, and a good year or so into normal platelet counts, the toxoplasmosis dx was lifted and I was told to stop warfarin. That week --I repeat --THAT WEEK! -- I had my first mini stroke. After a yesr of mini strokes ( eventually confirmed by MRIs,) I was diagnosed with APS. Warfarin was resumed and mini strokes stopped. I had been double positive for APS (most recent blood test was not available back in 2000.) 4 years later I discovered I am gluten sensitive. After going gluten free all my APS blood tests dropped to normal. Given my previous experiences after going off warfarin back in the 90s, I refuse to stop the drug entirely. But I remain symptom free with an INR as low as 1.5.
My long story does not really offer any clues for you in dealing with your current health nightmare, other than you might seek out anuttitionist to explore an undiagnosed food allergy. But my story does illustrate that the complex metabolic interactions of hormones with meds is still not understood as well as some docs think.
I have a very strict diet of high protein and barely any carbs/gluten etc (have had extensive bowel surgery and it has literally left my gut so delicate that I can't tolerate many foods), but luckily can still have dairy. Have explored various diets over the years and seen several dieticians and nutritionist over the years...diet has absolutely no bearing on me (obviously unless I decide to go mad with the grapefruit juice or alter my Vit K intake) apart from my stomach. My INR has to be run at 3.5-4 (my 'happy' level). If it drops below 3 I am in danger of clots and below 2.5, we bridge with clexane. My INR has always been pretty stable, with the odd blip here and there, but we've always known why. This was very bizzarre.
Bizarre indeed! Someday, over the rainbow, this bizarreness may be explained. In the mean time, stay strong,
sorry to hear you are having a rough time. Can I ask was your bowel surgery due to APS mine was . On the subject of periods I never really had them before my whole life normally 1-2 a year it’s a miracle I got pregnant twice and I wasn’t even diagnosed but it was my pregnancys that made things worse . When I went on warfarin I started to get a few periods 3-4 times a year . Now I guess I’m post menopause as I’ve not had any for about 6 years . In the whole of my menstrual life I would say that I had no more than 40 periods .
The surgery was due to APS yes, clots wrapped around my organs strangling them. Unfortunately my bowel was already destroyed by the time they figured out what was going on so they had to whip it a lot of it out, but then I had a bowel hemmorhage a few weeks later so they had to whip away most of the rest of it. I have the tiniest piece of ilieum & tiniest piece of colon left so my guts aren't in the best shape at all. I didn't have periods after the surgery for a few years (I think that was due to a combination of my ovaries shutting down, surgery etc) and was actually told I was infertile at 18. Was told IVF wouldn't work in my case (blocked fallopian tubes) so had kind of resigned myself to not having kids (couldn't afford ICSI) but somehow had a couple of very early miscarriages (more than likely due to not knowing I was pregnant and still being on warfarin). Ended up getting pregnant again and had a healthy baby. Checked over afterwards and they couldn't figure it out (dye test on fallopian tubes and still completely blocked). Periods returned normally, and within about 14 months, pregnant again, despite being on the pill. Both pregnancies didn't cause any flares or anything, in fact I felt more healthy than I ever had. Periods completely normal again afterwards, with the odd very heavy one every so often, but about 5 years ago, they completely stopped and Doc believed I was going through the menopause. They returned after about 14 months, normally, then about 6 months ago became really heavy & constant so haven't got the faintest idea what is going on. Hoping the ultrasound will shed some light.
I had a blood clot to the bowel and it burst they took some large and some small. They didn’t know it was a clot at the time and said my bowel had burst another 9 years until diagnosis from this event .
I have not had this, having not had Warfarin, but others on here have had unexplained rapid ups an downs, I hope they are going to continue to monitor you closely, please seek help if unwell or worried. MaryF
I too felt healthier with more energy when pregnant. A doctor, now retired, actually listened to me and pointed out I had a hormone imbalance between estrogens and progesterone. I went on a locally compounded progesterone cream, and Wow! That stuff was great! I stayed on it untio late peri-menopause. And now, post menopause, I feel great!
We were expecting mine to completely kick off during pregnancy/childbirth so was really surprised it didn't. Had a massive random flare that lasted 2 years back in 2011 that left lasting damage and ravaged my CNS. Not been the same since and seems to have gotten worse as I've become premenopausal. Rheumy has always been adamant I steer clear of HRT and have managed fine without it up until now. Always difficult when you have a few AI's because you can never be certain which condition is causing which problem considering they all tend to share symptoms. Hopefully we'll get to the bottom of it.
Update: I have had my chest x-ray (results in about a week). I have also had my ultrasound and the sonographer believes I have Adenomyosis (cells from the lining of my uterus growing into the muscle wall of my uterus) which is what is causing the bleeding. No fibroids or cysts were visible, so I have to go back to the GP after Christmas and sort out the best way to tackle this. Not directly caused by lupus/APS but she believes all my comorbidities, coupled with the surgery may have contributed to causing it.
Update again: Chest x-ray results are showing all clear so it's being put down at the moment to HSD & Lupus 
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