Hi. It's a long time since I posted here but I'm hoping someone might recall the problem I've had, particularly with getting a diagnosis of lupus. Since I last posted I have had 2 TIAs (LA) and gotten a diagnosis of vasculits. I have several AI diseases, a malaria rash and many symptoms of lupus. Whether I have lupus or not my symptoms are much worse with oestrogen which I use for early ovarian failure. I'm wondering if testosterone might be a better option. Obviously I would need to speak to my doctor about it but any advice/experience would be most welcome
Thank you
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Suecon
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Oh dear. You've had a lot of bad stuff going on. Sorry to hear it. When it comes to complex hormone therapy, you're really best to get a specialist's opinion. Do you have a menopause specialist in your area? I have one, but she has been kicked off the NHS (deemed not important enough -rrrrr- when women like you and I are out there lacking ovaries; and in the multitudes!) so I have to see her privately. But she is worth every penny! She has fixed me with regards to hormones.
I had my ovaries removed at 43 and had already gone through reproductive system annhialation due to chemo the year prior. Testosterone is not a substitute for oestrogen. So it's not a matter of switching up one hormone treatment for another. You would need to have a full panel of hormones done along with your Testosterone levels checked before anyone would give you Testosterone therapy. And even then, it's not regulated for women (or wasn't when it was started for me in 2014) and so you'd likely need a specialist to prescribe it. You also would have to show that yours is significantly abnormal. Mine was 1/10th of what a woman's should be and the symptoms were extreme fatigue all day long for 2 years, so the specialist gave me 1/10th of a male dose and I was fatigue free in weeks! (Until CTD came along that is.) This treatment went along with my oestrogen patches and progesterone to keep the uterus safe. So there are many pieces of the puzzle.
Don't be surprised if your GP doesn't know much about this either. And Rheumy's and oncologists will always go against hormone treatment, but I find they do get in line when they realise that without ovaries we are not women moving towards menopause. We are at the elderly end of post-menopause, which brings not only the symptoms of menopause, but bone, brain and heart health deterioration that come from early onset.
Unfortunately there seems to be a trade off we have to make. I've managed to reduce my oestrogen by half and find I'm holding steady with my symptoms. If I go any further down, it's a disaster. Do you think reducing could be an option? How old are you and how much oestrogen are you on?
Thanx for replying, Panda2. I can see it's not going to be straightforward
I'm now 65 and ovarian failure kicked in when I as 32/3
Since then oestrogen has been a lifesaver but even tho I now only use 1 application a day my 'lupus' symptoms are much worse than when I miss a dose completely. But without that single application I dive into menopause symptoms, with depression being the foremost
Yes, you're very complicated and it's why I tear my hair out knowing they got rid of the NHS menopause specialist in my area. Having lost your ovarian function at that age, you will likely be lower in Testosterone too, since it's partly made by the ovaries for us. But Testosterone is not going to make up for lack of Oestrogen. And once you add that, it affects the equilibrium of your other hormones, so there's quite a long trial period to get into some kind of stasis. See what your GP says and ask for a hormone specialist referral. There might be one where you are. Ours just left in 2016. They know all about the depression side of it and the complications with people with our extra conditions.
We have a women's hospital here and I'm pretty sure there's a menopause clinic attached to it. If it's the one I remember from 30 years ago - and still running- I will ask my doc to refer me. I know it's not a priority tho and waiting times will be long.
That's potentially perfect! You are right about the timing though. It took 8 months to get me to the consultant the first time. We do know the drill though. Get the referral. Get the date. Get on the cancellation list. You never know.... 😊
Would DHEA cream help for your condition? It has testeseron like effects. It's usually not covered by insurance thou. I needed to go to a compounding pharmacy to make it for me. My doctor prescribed it for me to try
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Lupus/Sjogrens or not ...
Lupus diagnosis 6 months ago
Diagnosis based on ANA and symptoms only?
Good news not so great...and I'm really angry.
Who to turn to for help......
