Hi,
I have had a blood test for Hughes 3 weeks ago. I have another 3 weeks to go for results. My symptoms include :
5 very early recurrent miscarriages
Cold hands and feet a lot of the time (when others in the room are ok )
Thyroid antibodies - autoimmune?
Lightheaded at times
Was anyone experiencing these symptoms and tested positive ?
Did they test all three antibodies and were they positive the first time?
Best wishes from Kerstin in Stockholm
I do not think you have to wait 6 weeks for the first result. Call the hospital. I had my answer on the bloodresults taken for APS after 3 weeks or a little less. There should be 12 weeks between the APS-tests I have learnt. At least you could see if the first test is positive or negative.
Kerstin
Hi, I have no idea what the results are. But I'm holding out on hope that this is the reason for my miscarriages. I know it's not nice to have. But i would feel like I finally had a breakthrough if it was this and can be treated. I am being tested for Thrombolia screening and antiphosphillipd antibodies. She quiet clearly said to me you will have to wait 6 weeks for the results. The GP have not had my lab results back so that prob says it all. Have to keep waiting.
Hi I am very pleased you have been tested, do let us know the results when you have them, your symptoms sound very familiar. MaryF
Will do Mary!
Hi your situation sounds very similar to mine. 5 early miscarriages in the last year always cold hands and feet! I have had no treatment so far. I tested positive on my first Hughes test so thought a cause had been found. I then tested negative on my second test so I have been told I do not have Hughes. I have started a new round of tests at St Marys Manchester and get results 4 April but have been told it is likely they will not find a cause. I have clexane and aspirin to "try" if I want to but medically been told there is no reason I should have to use them. I feel for you it's so emotionally distressing and we just want an answer so we know what the problem is. The only test so far that has been a potential red flag is my AMH level is low at 2.7pmol and I had this tested privately which means my ovarian reserve is low. But saying that I am getting pregnant very easily. So yes I had your symptoms too one positive test one negative test Aaaarrgghh x hope you get some answers soon x
Your story is almost identical to mine,Esme! I tested positive twice for anticardiolipin Ab and had been getting pregnant easily. But after 3 mc I was no longer getting pregnant as easily. Went to fertility clinic who tested amh and mine was just below 3 pmol as well. When they scanned I only had 5 follicles and the consultant thought this was also a factor in the miscarriages because I might mot have been releasing good eggs every month. I did IVF and I'm 20 weeks pregnant now, taking aspirin and heparin since my positive test. Did they scan you as well as measure amh and were you told something similar to me? A good amh is >20pmol and you should see much higher numbers of follicles too.
I had 12 follicles in each ovary , do you know what that means in terms of ovarian reserve? (on a natural cycle just to just the reserves).
Those are good numbers! I was told most women should have about 10 on each ovary. So at least that means you shouldn't need fertility treatment hopefully.
Hi Tlove, strange you say that as I have not fallen pregnant in the last 4 months of trying whereas last year it was every other month! Congratulations on your pregnancy!!!! So nice to hear some positive news!!! Yes I have been told that the miscarriages are probably a result of low quality eggs but IVF seems like a bit of a minefield to me, did you have success on your first attempt? I have not been scanned as I have 1 consultant telling me to keep trying, using clexane and aspirin, and eventually I will probably carry and another consultant saying I need to look at donor eggs (which is not for me personally) as it is unlikely I will conceive and progress successfully with such a low AMH level. Congrats again !! x
Hi Esme, when I was trying naturally o was using the ovulation sticks and noticed I wasn't ovulating every month, my cycles also went a bit erratic and some were short, which raised alarm bells with the clinic.
I was extremely lucky and got pregnant on first round of IVF. The clinic was hopeful because they knew I was able to get pregnant - it was holding onto the babies that was the issue. So they believed and I believed that under controlled conditions, they would be able to pick out nice looking embryos to give myself the best chance. I had looked into donor eggs before my appointment but they said that would be much further down the line and to try myself first. Having said that, I only had 4 eggs collected and ended up with 2 making it to blastocyst (5 day embryo). But both were transferred and both took and we're expecting twins! I had thyroid problems too 4 years ago and it was when this was under control initially I became pregnant. So maybe something will show on your thyroid test and when this is controlled you will get lucky. Thyroid and Hughes seem to come together.
That's amazing!!! 2 out of 2 wow!!! You must be so excited x I was using a fertility monitor and ovulating every month without fail with cycles I could predict to the day so decided to stop using the expensive daily sticks as I know when everything is happening. I think I will progress to try IVF if I continue to miscarry its too heartbreaking but as my consultant said I need to look at my situation now as a natural IVF cycle each month and I am fortunate to even be conceiving so easily in the first place, I am 40 now. Yes I will see if anything comes up on the tests, thank you, bet you cannot wait for the next 20 weeks to go by !!!!
I do feel like I'm on countdown now im halfway and lucky with twins it's only going to be 38 weeks! Anxiously waiting for my next scan and for definite movement to start. I'm 37 next week.
Just to say I hope you've been told to take the meds as soon as you get a positive result. For my 3rd mc I had already been diagnosed but they were cautious and waited until I had a successful scan. I think it may have been too late as it was close to 7 weeks before I started on the meds and lost it by 9 weeks. For this pregnancy I started from about 4ish weeks, after positive test but before any scans.
Best of luck with your journey, hope you have success!
Hey Tlove, would you tell me in this case what would IVF do better? I couldn't understand the reasons you did it..
I am thinking of doing IVF but I am afraid this wont make a difference for me.
Thanks dear.
I had been monitoring my cycle and after the 3rd miscarriage I noticed I wasn't ovulating every month. For me, my amh was low which indicated diminished egg reserve. So the consultant thought that by having fewer eggs meant that I may have been releasing poor quality eggs some months. If these were the ones getting fertilised, they would end in miscarriage. By doing it in the lab, they can tell which embryos will give you a better chance. At least that's my understanding of the whole procedure!
I am also doubting egg quality issue, specially after trying lots of medications with no success. I am more convinced now of trying IVf, thanks for clarifying 
Your GP should be able to test for FSH and AMH, I think these are the main ones to do. Then when you go to the fertility clinic for a consultation, they should scan you to see how many follicles you actually produce. This information is used along with the AMH reading to determine best course of action. Best of luck!
Awwww so frustrating ! I would be very frustrated to if the first test was positive and the second negative! I had 12 follicles in each ovary , do you know what that means in terms of ovarian reserve? (on a natural cycle just to just the reserves). It's good you get pregnant easily but so frustrating that you are having issues for it going forward. Do you also have any thyroid condition or been tested for thyroid antibodies?
I think from what I have read but please don't quote me (!) is that 12 is high ovarian reserve so that would be a good number I think! I am having thyroid tests now (along with everything else) results in approx 4 weeks but they have said they would write to me if anything came up (I had the bloods taken on 4 Jan 2016) in the meantime. Not heard anything, called them and they said in all likelihood nothing has shown up on my results but we shall see! Its awful as you don't know what to do for the best, I have one consultant telling me to try clexane and aspirin on the next pregnancy so I am just debating whether to try that or not! have you had any other tests done where you have the results yet?
Hello I have Hughes Syndrome!
New to Hughes syndrome
hughes and whole in heart ?......my first blog!
