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Author Topic: Hughes Syndrome/APS/Lupus Anticoagulant Enquiry  (Read 7908 times)

Driedupprune

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Hughes Syndrome/APS/Lupus Anticoagulant Enquiry
« on: August 18, 2013, 05:01:21 PM »

I wonder if any readers are in a similar position and/or are able to suggest some tips and advice please?

I have the above syndrome and take Warfarin daily. I also have hyperthyroidism and take Levothyroxine daily.  I have been taking Paroxetine for mood swings for many years.

I had a total hysterectomy (womb and ovaries) 28 years ago.

I am now 58 years young and am suffering from what appear to be menopausal symptoms - i.e. night sweats, hot flushes, smelly underarms, dry vagina, total intolerance of anyone who does not 'conform' etc etc.  I visited the doctor who explained that due to my 'funny blood' I am unable to take ANY HRT.  I also am unable to try Black Cohorsh, soya, or any other preparations the pharmacist has suggested.

My question is: does anyone here have similar diagnosis who may have found relief somehow from menopausal symptoms?  I cannot possibly be the only person who takes Warfarin going through the menopause!   

Please help if you can as my other half is being driven batty!!

Many thanks for reading - even if you can't help.  :(

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Limpy

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Re: Hughes Syndrome/APS/Lupus Anticoagulant Enquiry
« Reply #1 on: August 18, 2013, 05:36:51 PM »

Hi Driedupprune - Sorry I don't take Warfarin so can't help there.

Your symptoms do sound menoausal, I think it would be worth seeing another doctor or getting referred to a menopause clinic.
This doctor who says who says you have funny blood - hhmmm - not very specific, see somebody else and get more information.

Re OH being driven batty - there is an advice for husbands thread on here which is really useful

http://www.menopausematters.co.uk/forum/index.php/topic,2458.0.html

Welcome to the forum   :welcomemm:
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honeybun

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Re: Hughes Syndrome/APS/Lupus Anticoagulant Enquiry
« Reply #2 on: August 18, 2013, 06:54:27 PM »

Have you tried sage. I have a friend who is having great success with herbal tincture.

I agree with Limpy.....you need specialist advice. You can contact Dr Currie. Check out the home page for details.


Oh and welcome to the forum.


Honeyb
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CLKD

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Re: Hughes Syndrome/APS/Lupus Anticoagulant Enquiry
« Reply #3 on: August 18, 2013, 09:12:02 PM »

 :welcomemm:

Is there a support group for your combination of conditions?  Yes, I see by googling that there is advice from the NHS for Hughes Syndrome as well as a support group.  Interesting but probably incredibly difficult at times to manage  :-\.. APS is exactly?  Lupus is an auto-immune disease .......... not well known unless one is aware of a sufferer.

I agree: contact Dr Curry who runs this Forum.  In the meantime, have a browse round.  We have jokes here too ;-)

How is your diet?  Eating regularly can help with mood swings and helps even out blood sugar levels.  Regular exercise can help if you have the energy.  Keeping hydrated is important.
« Last Edit: August 18, 2013, 09:18:16 PM by CLKD »
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Driedupprune

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Re: Hughes Syndrome/APS/Lupus Anticoagulant Enquiry
« Reply #4 on: August 19, 2013, 07:47:05 AM »

Thank you for your responses ... I'll definitely be checking another doctor. How do I copy my enquiry to Dr Curry?
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Taz2

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Re: Hughes Syndrome/APS/Lupus Anticoagulant Enquiry
« Reply #5 on: August 19, 2013, 08:07:08 AM »

You can contact Dr Currie by using the panel on the home page http://www.menopausematters.co.uk/ It costs £15.00 for a ten minute consultation.

Taz
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Elena

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Re: Hughes Syndrome/APS/Lupus Anticoagulant Enquiry
« Reply #6 on: August 19, 2013, 04:55:17 PM »

I have hyperthyroidism too and take 125mg of thyroxine per day.  I have been told not to take black cohosh or a multitude of other "natural" substances so it may not necessarily be the warfarin that is at fault here.

Agree re. GP "funny blood" indeed  >:(
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CLKD

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Re: Hughes Syndrome/APS/Lupus Anticoagulant Enquiry
« Reply #7 on: August 19, 2013, 08:46:12 PM »

Perhaps 'funny blood' is the correct terminology here, a phrase between patient and GP  ;)
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Rowan

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Re: Hughes Syndrome/APS/Lupus Anticoagulant Enquiry
« Reply #8 on: August 20, 2013, 09:09:26 AM »

Its other name is 'sticky blood syndrome'

think its the GPs way of being "cosy" I think its a bitt condescending.
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CLKD

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Re: Hughes Syndrome/APS/Lupus Anticoagulant Enquiry
« Reply #9 on: August 20, 2013, 11:09:52 AM »

AAAhhh ..........  ::)
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Rowan

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Re: Hughes Syndrome/APS/Lupus Anticoagulant Enquiry
« Reply #10 on: August 20, 2013, 02:14:42 PM »

I only know because my first husband has it and has been on Warfarin since he was young.
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CLKD

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Re: Hughes Syndrome/APS/Lupus Anticoagulant Enquiry
« Reply #11 on: August 20, 2013, 03:36:00 PM »

 :thankyou:
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Taz2

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Sarai

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Re: Hughes Syndrome/APS/Lupus Anticoagulant Enquiry
« Reply #13 on: August 29, 2013, 09:57:32 PM »

Yep I'm here.
I have APS, Lupus and Sjodrens
You can join Health Unlocked Hughes Syndrome, just type that in google. It is the Hughes Syndrome support group. The members are very helpful. It looks quite quiet right now but that is because the site has just had a massive revamp and some are finding it hard to navigate.
Wonderful to come across a fellow sufferer and warfarin taker.
I would like to say however that Professor Hughes, who discovered Hughes syndrome is my Dr and he told me recently that we can take HRT as we are properly anti coagulated, there for protected.
Other members of the forum take HRT.
He also discussed giving me short bursts of steroids to help with symptoms.
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CLKD

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Re: Hughes Syndrome/APS/Lupus Anticoagulant Enquiry
« Reply #14 on: August 30, 2013, 02:43:54 PM »

 :thankyou:
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