The Change 🤦🏻‍♀️🤦🏻‍♀️

[BridgetGoldie]

Hi all

Been a while since I posted as had to have a Partial Nephrectomy in August as I had a tumour on my kidney. I only have this one kidney which already has some damage and lost my other kidney in 1996 following renal Thrombosis when I was diagnosed with APS.

Anyway scary time due only one kidney, warfarin and obviously the dreaded C word! I have recovered well and getting there and will be closely monitored for the next 5 years.

Now for my question!

I went through menopause at around 46 and am really struggling with it. I feel a sense of loss of who I was, my mood is low, gaining weight, my joints (especially) my knees are so bad. Hot flushes, difficult sleeping, fatigue, hot flushes and practically a non existent lido!

I have lived with APS for many years and managed to have a relatively good life, bringing up my children had a good career etc and despite my health issues always kept going.

I now at 52 post menopausal feel like an old woman! 😢

My mum who is 72 and on HRT could run circles round me! 🤣 I miss ME!

I have been told HRT is not suitable if you have had thrombosis but not sure if that is a fact and if any updated information has any other solutions?

Does anyone know please?

Kind Regards

Bridget 😘

[MaryF Administrator]

Some on here do have transdermal patches, however, this is strictly monitored by a Hughes Syndrome/APS Specialist, and many specialists say no. It is a question you need to direct to your medical team, also do investigate your Thyroid at this time, in case you have any of that going on, perhaps beyond the usual TSH done at the GP surgery. Also check that your levels of Folate, Ferritin, B12 and D, are all at the right levels, so nothing is adding to how you are feeling currently. ncbi.nlm.nih.gov/pubmed/284... MaryF

[BridgetGoldie in reply to MaryF]

Hi Mary thanks for that, I will speak to my doctor to check these out as if I can avoid any kind of HRT I would prefer to as I would hate to have another clot especially with the ones I had being so severe and on my kidneys as I really don’t think my one remaining kidney can take anymore! 🤷🏻‍♀️I am already on Vit D as a couple of years ago I was to be Vit D deficient and I know when I went on Vit D it helped a lot with my joints.

Can I ask what you mean about the thyroid - beyond the usual TSH?

TIA

Bridget 😊

[MaryF Administrator in reply to BridgetGoldie]

Some of us go off and order our own private tests, there is a list under 'pinned posts' for me it revealed that I was very hypo thyroid and it had not shown up in my TSH tests, so was worth dong. There is nothing wrong in doing this, (my GP found them really helpful, as did my some of my consultants), as I did have all the symptoms. MaryF

[GinaD]

I spent a couple of years on locally compounded progesterone. That helped a lot. Note: progesterone has a short shelf life, is natural and non-patent worthy, and is hard to produce. So, big pharma can not see a profit. Hence the need to get it from a local compounding pharmacist.

[judes]

Oh how I feel for you it’s horrible but it will get better. I had my son at 35 and went straight into an early menopause and was diagnosed with APS at the same time, he had a lot to answer for!

HRT is a very personal choice especially with APS it’s really not recommended. However, you also have to weigh up quality of life, sometimes it’s a tough choice, in my next life I’m coming back as a pampered cat!

I’ve been on some sort of HRT ever since, now at 59 am slowly coming off it as I’m not sure I need it anymore.

J

[milkwoman]

Could you be given compounded transdermal HRT? Although I do not have an official APS diagnosis, I have tested positive for the autoantibodies. The reason for no DX is that I haven’t had an “event” which is required for DX in the US. Stupid, I know.

I’ve been on HRT for a few years (I also went through perimenopause early and have been in full menopause for about 2 1/2 years. I’ll be 52 in June).

I’ve had estrogen patches and oral progesterone but couldn’t get the balance right to prevent breakthrough bleeding. I’m now on a custom compounded combo 50:50 bi-est / progesterone cream (contains equal amounts of estriol and estradiol as well as progesterone; in my case i do not require supplemental testosterone since I make enough of that and supplementing it raises my levels quickly which makes me irritable and angry).

I submit symptom sheets to my compounded pharmacist who consults with my GYN to adjust the ratios. So far no breakthrough bleeding. It did take a few tries to get ratios correct to alleviate all symptoms (overheating was the last to go). Dosages and ratios will continue to be tweaked as my natural estrogen-producing levels continue to drop.

I’ve not had any issues with thrombosis but I will be honest to say that I’m not versed in that area. I don’t think it’s right that you should suffer - perhaps it’s time to seek out a new doctor? A functional medicine doctor might be better.

Good luck!

[BridgetGoldie]

Thank you everyone for your replies - some food for thought!

Bridget x 😘