Sticky Blood-Hughes Syndrome Support
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First time posting.........

Hi I joined this forum many months ago and have found it very useful. However although nervous thought it best to post my own post about specific issues to see if any others out there may be able to help.

I have not had a particularly good time since this all began two years ago and therefore this had left me with anxiety and a difficultly in controlling many symptoms, and doctors not really willing to address the symptoms. From someone in there 30's who was physically fit and generally healthy I have gone to feeling like an exhausted wreck three times my age. Having fought and fought for answers along the way.

Although I have many questions I though I'd start with one. My periods on warfarin are horrific not only do they last approx 10 days per month the heaviest two days I can hardly leave the house (which is not ideal with a small child) and they leave me exhausted with a constant headache or migraine. I fought and fought about this and eventually a few months ago found my iron was so low I needed an iron transfusion. This did help, the mirena coil has been finally suggested and I wanted to hear from anyone that has used this and how they felt in general about this. I am nervous because I seem to get lots of side effects and am unsure whether half the time they are warfarin or APS related. Is the mirena coil the best option and what side effects not necessarily related to APS but the coil itself have people found. I have had friends who used this coil but hated the side effects.

Sorry my post is so long, even for just one of many points I'd love to raise to find some answers and relief....

17 Replies

Hello, so pleased you have taken the courage to make a post. You are not alone with this problem, and many women on this forum have had a similar problem, some have had great success with the Mirena Coil. It is great that your Iron was tested as low Iron makes people feel very dreadful, I do suggest that you also get your GP or consultant to test your B12, and D also, plus your Thyroid, as all will contribute to feeling awful. Some women later on after finishing having their families find Endometrial ablation useful, but if you have not finished having children then not such a good idea. I a sure you will get lots of useful answers shortly. Best wishes. MaryF



Well this post could've been written by me! I have terrible periods from warfarin and had an iron infusion 3 weeks ago to treat the anaemia it caused. However I had a bad reaction to the iron and my haematologist has said I can't have another.

I wanted an endometrial ablation to stop my periods but can't due to having a classical c-section (I've finished having babies!)

My doctors are pushing me to have a coil and I'm seeing gynae in a few weeks but I have the same reservations as you do. Very worried about side effects and also about the fitting!

Everyone is different though so I suppose we won't know how it will affect us personally unless we try!



Hi Kelly! I have not even heard or been suggested endometrial ablation, so know nothing about them. I'd be very interested to hear what they say to you about the coil. I'm just so nervous as two friends (no APS) both said insertion was awful and both came off it as could not bear side effects, although I can't carry on for another 20 years of periods like this! It really upsets me as i have had to cancel plans or rearrange because of it and they really affect family life.


I'm the same, staying in the house and cancelling plans. If you've finished having babies you should look into the ablation.

I've been offered a general for insertion as I didn't have my babies naturally and couldn't tolerate a recent womb biopsy. However they want me to come off warfarin and bridge. I really don't know what to do!

I'm going on 21st so I'll let you know what happens.


Thank you would be interested to hear, are you uk based?


Yes I'm in Cheshire, where are you?


Hertfordshire. How long have you been diagnosed with APS?


Diagnosed and on warfarin for 18 months - actually had it for at least 17 years doctors think! 40 now. How about you?


We are so similar! Diagnosed and on warfarin for 18 months and am 39


Well it's nice to 'meet' you' hope you're doing ok apart from the period issues x


You too, unfortunately loads of other issues too :~((


Hi and welcome, dont be nervous, we are all here to share our experiences and knowledge.

My past periods increased in bleeding after each pregnancy, by the time I was 32, I was 'not' bleeding for 4 days a month, my whole life was geared around it. The 1st two days I would flood with clots, I stopped going out the house. I had APS at that time but was not aware or diagnosed so was not on any blood thinners.

So your problem probably relates to both warfarin and APS, I totally emphasise xxx

There is so much more awareness and help now, is it possible for you to see a gynea doctor, who has some experience with APS?

Where are you based, as someone here may recomemend someone?


I'm in Hertfordshire. I have booked a private appointment to see Dr D'Cruz in London (as not far for me really) as I'm so fed up of not getting that many answers or contradictions locally. I'm under a hamatologist, Rheumatologist, respiratory physician and cardiologist locally and seeing the gynaecologist soon too! All I feel I have done this last two years is have hospital appointments or investigations with various consultants!


Im originally from Hertfordshire, near St Albans. The last gynea doc I saw was Mr Andrew Hextall, Consultant Gynaecologist - he works out of Hemel & Watford, privately Bushey and Harpenden. He knew a bit about APS, but what he didnt know he went out of his way to find out, he also liased totally with Prof. Hunt (my Aps specialist at St Thomas). This was over 10 years ago so his knowledge will be even better than when I was under him.

Funny enough Im back up to Herts next week......

Pm me if you want any more details or info on Docters Ive experienced, like you I went through a lot, general surgeons, bowels, bladder, neuro etc!.


Similar story from me in St Albans WEST VIRGINIA USA. Horrid periods, anemic. In my case, I had been sometimes more, sometimes less, anemic since childhood. Turns out: in addition to APLS, ( or probably the main driving factor in my APLS) was an untreated gluten sensitivity! My inflamed, compromised gut was not doing a good job absorbing larger nutrients such as iron and B vitamins. I went gluten free in 2004 and 6 months later I was, for the first time since childhood, NOT anemic. My Hemoglobin and hematocrit were both boringly normal.

Sometimes it's nice to be boring, don't you think?

I now march up forested West Virginia hillsides past the logs and tree stumps where I used to stop to catch my breath. And then when my trail club stops for a snack, fellow clubbers will apologize for eating donuts and pastries in front of me. They will offer bites to everyone else and give me their apologies for not having food I can eat. They just don't understand why I smile, wave my hand and assure them that I'm just fine and, no, I don't want any of that doughnut or that pastry no matter how good they taste. Climbing those hills effortlessly, or swimming without having to breath at every stroke, is worth so much more than a doughnut.

1 like

Thank you for replying, I was considering whether a gluten free diet might be an option, I have heard a lot of people on here talk about it. How does it help mainly in APS?


The bio chemistry has not been nailed down yet. But the relationship between gluten intolerance and autoimmunity is pretty clear. The most likely theory is that since gluten is the undigestible protein, that once in the gut that long chain protein can alarm and confuse the auto immune system. This confusion can result in auto antibodies.

And a lot of people don't realize that gluten is the undigestible protein. You might see on the package that your slice of nice healthy whole-grain bread is going to impart 2 g of protein to you but that's not entirely accurate. It may be true that the bread contains 2 g of protein but your body cannot use that protein because our gut will not break it down into usable smaller fragments.

You see – cows have very long intestines. They can handle it. Ours are relatively short. We can't.


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