Hrt obstetric aps

[Burtie-bengal]

Hi

I would like some info on hrt and Aps.

In 2015 I lost a baby at 5mths pregant (after 3 sussesful pregnancies)

I was advised by my local nhs hospital it would be ‘ one of those things’ so I sought private testing. I had a private aps test done in London about a week after my loss which was normal. Then about 3 weeks later I saw professor Siobian Quenby (nhs obstertrian) privately who tested my blood again and I was found to be positive for lupus anticoagulant. I didn’t have a second test as Professor Quenby prescribed heparin and on follow up with her she said suspected Aps due to my bloods and fibrin deposits in my placenta.

I went on to have 2 more babies on the treatment of heparin.

After baby number 5 in December 2018 my periods went haywire and I developed peri menopause symptoms. Fsh shows premature ovarian failure as I’m only 39.

I would like to start hrt but as I have this unofficial aps diagnosis my gp will only let me have provera and ovestin cream. I need oestrogen!!

I’m happy to go private but would like to know if I’m ok to take this? I did see professor cruz ( think that’s his name) at London lupus clinic in October 2015 when pregnant just to make sure my obstertian was providing me with the right treatment and he said after pregnany I wouldn’t need treatment for aps as obstetric

Any advise would be greatly received

[rach1081985]

We are not advised oestrogen if have aps.. Im sure other ladies can help you with what treatments available... Sorry for your losses

[KellyInTexas Administrator]

You really are going to need a specialist APS Rheumatoligist and hematologist first to get a proper APS diagnosis, and then they work with your APS OBGYN, who it sounds like you already have.

It is important not to have added estrogen, as it promotes clotting.

You are going to need to see the experts on this one!

Best of luck-

Kelly

[Burtie-bengal]

I don’t really want to pay again to see another APS specialist as I felt I wasted mine and dr cruz time before. He said he would only treat me if I had a clot. He did advise getting tested for Aps again but I can’t see my GP being happy about that.

I have spoke to a menopause specialist and they said they would be happy for me to take transdermal hrt.

I have also seen somewhere that professor Hunt says you can take transdermal but that might be if your on blood thinners.

I wonder how high the risk is anyway as the risk if your don’t take it in early menopause/ ovarian failure is cardiovascular disease, osteoporosis and dementia. Which is the better of two evils ?

[KellyInTexas Administrator in reply to Burtie-bengal]

The risk is quite high.

It’s also important to ascertain why you have developed premature ovarian failure.

I did the same thing and it was down to advancing APS symptoms and extreme illness and micro clotting/ poor circulation.

There could be ( not saying there is) I bigger picture going on.

This is why it’s important to have a comprehensive picture.

My APS specialist Rheumatoligist will not even give an OK to the mirena cool for birth control, which most APS specialists will.

[HollyHeski Administrator in reply to Burtie-bengal]

Hi, I'm under Prof Hunt, triple positive and on anticoagerants, but was not allowed any form of estrogen or HRT.

The thing here is APS can effect us all differently, we are all individuals and medical treatment should be sought by an APS specialist along with gynaecologist to our specific symptoms.

Your do young for ovarian failure, I would want more answers before doing anything.

Please try and see an APS specialist or a gynea doc who understands APS.

[MaryF Administrator]

Hello, you need to be under the right specialist, as it is vital that you have a Hughes Syndrome/APS specialist who fully understands this disease and may be able to advise on transdermal HRT, it is dangerous to have a GP prescribing it without a full working knowledge and with a recommended specialist in the picture. MaryF

[Burtie-bengal]

I’ve spoken to my GP and to haematologist when I had my last baby and they both said that don’t need to see anybody or have any treatment as it’s obstetric. Professor Cruz said he wouldn’t even recommend aspirin unless I have an event.

It’s all so frustrating. I will see if my GP is able to speak to someone but I don’t think we have any specialists where I live (Leeds) and travel to London isn’t an option anymore.

Should I be taking anything for clotting? Isn’t that only if I have ‘event’ other than obstetric?

[KellyInTexas Administrator]

If you are over all feeling otherwise well- then perhaps ok to maintain?

Can you not simply go into a gynecologist appointment right now in Leeds ? Covid 19 patients would not be in a stand Ali e clinic in a non hospital setting, or is the clinic in a hospital?

If you are having symptoms of APS you should be seen.

If you are not having symptoms of APS, but are concerned as to why your ovaries are failing and

You are Pedi menopause’s, and are not satisfied with any explanation as you why this has happened , you could be seen and ask if you could be tested to see if your aps antibodies are raised.

Will an obgyn order this panel? If yes- could be worth the dr visit. My obgyn understood the relationship between micro clotting/ large DVT’s , and my reproductive organs

I was having DVT’s one after another - confirmed APS - not obstetric APS although I also had that but didn’t know it at the time

[Sevenstar]

Hi , well I've been on HRT for 16 years and loved it , it's served me really well but since being diagnosed with APS in Feb I've been told to come off it ASAP ,I was using transdermal gel and mirena coil ! I'm absolutely gutted as don't think there are any alternatives, sorry you are going through all this , it's all a worry I know !

If anyone has any ideas would love to hear?

[Burtie-bengal]

Many thanks for all your replies

I’m going to speak to my gp and see if she will repeat my APS bloods. I have a letter from London Bridge requesting this from 2015 but as I was pregnant I was advised to wait till after giving birth but as I wanted more children I didn’t want to test negative so didn’t bother getting tested again.

If it’s positive again I will see if I can see a specialist on the NHS. If negative I may try estrogen as a gel.

I’m taking progesterone now which I suppose is better than nothing. Not sure if this is ok with APS but I had to take with 2 APS pregnancies from 4 to 36 weeks when I had my c section so I’m sure it must be ok plus the dose is only very small. I’ve also been prescribed ovestin cream which I’m told is ok the dose is tiny and fine to take with APS. I’ve not tried that yet though.

All this stress and worry and I probably wouldn’t even get on with estrogen as I couldn’t take the pill when younger as it made me so sick.

[Burtie-bengal]

Also when my periods went haywire coming every 3 mths my fsh raised then went normal. My doctor put me on metformin this gave me a normal cycle but I stopped it due to awful side effects.

She said I had metabolic syndrome. Is this something related to APS? Sorry I don’t have much knowledge other than obstetric.

[mariamoo1]

I’m still taking my HRT tablets each day, they are a god send life changer. I had to have an hysterectomy at young age of 29yrs. Due to the heavy blood loss of giving birth to my 3rd daughter and my heavy unpredictable periods afterwards. So I guess basically, I’ve ripped up the rule book completely. As I’ve been on HRT for 20 years.

[Sevenstar in reply to mariamoo1]

Mariamoo1... Do you mind me asking if you have APS and if so what kind , I have primary and had to kick my HRT very begrudgingly after 20 very happy comfortable years ! What do you take to balance things, I'm just on Clopidogrel as touch wood no strokes or clots! Hope you don't mind !