Hi Girlagogo,

I'm sorry to read about the difficulties and worries you're having at the moment. I can undersand it is difficult when there are unexplained symptoms and waiting for further info.

See how things go with the ultrasound this week and once you have all your results in, if you are still experiencing issues and/or have any questions, then it might be a good idea to write things down and discuss with your doctor. It's important that you have appropriate answers and peace of mind so do be sure to discuss concerns with your GP.

I hope things begin to improve soon.

Wishing you all the best,

Ben
Cancer Chat Moderator

My doctor rang me today.  She said that because my calcium has been high since March,  the scans done before my hysterectomy were clear,  and my kidney results are normal with no high calcium in my urine, that I'm being referred urgently now to the Cancer of the Unknown Primary clinic for investigations to 'exclude' the possibility of cancer. She said because of my weight loss that that's a real possibility.  I didn't really say much as I'm still trying to get my head around it. I don't understand why I'm being referred there without a diagnosis.  Wondering whether with all the being pushed from pillar to post for so long and how long this has gone on for, whether it's too late.

Good Morning [@Girlagogo]‍ 

I was just reading your thread - How are you doing? 
 

Wishing you all the best x

Hi there. Well,  just read this thread and realised that over a year has passed since this all started! Not much has moved on due to Covid meaning hospital appointment waiting times are longer but I didn't get seen until  September by Endicronology. I was discharged from Haemotology as the consultant felt my blood results were not a concern for them but in the meantime also had a colonoscopy to rule out bowel cancer.  Some of my symptoms, like dizziness turned out to be a big drop in estrogen and I've since been given HRT which has helped a bit.

The Endicronology consultant still hasn't made a diagnosis, just had more blood tests and being "monitored" which is making me very unhappy as nothing is being done to find the cause.  

I have been told it's "likely" to be familial hypercalcuric hypercalcemia  even though I still haven't been tested for it and my parathyroid hormone hasn't been tested for a year so there doesn't seem to be any effort in trying to get to the bottom of my fluctuating calcium levels.  Really feel like I'm being fobbed off but still getting symptoms.  My next appointment is in July.  I just really want them to just find a reason for it than continue to "monitor."

I am 4wpo hysterectomy,  I have 2.69 calcium in blood level , I've spent the morning reading up .. 

I'm thinking auto imume might be a reason as my exzema and allergies have been bad , and only just started eostrogen patches 

I read something about high blood calcium but normal urine calcium I shall try and find it now . Think it had your other symptoms  as well

Hey Babysand46, hope you're recovering well. I't's interesting that you say autoimmune - have the doctors suggested what they think is the cause of your high calcium?  Mine has been 2.6 but I know this has lowered due to being on HRT. I read that estrogen can have an affect on calcium levels.  Before I went on it my calcium was 2.76 and then it only went up again for a short while whilst I reduced my HRT. I'm wondering whether my symptoms were even due to being menopausal as my estradiol levels on HRT are way higher than they should be.  The symptoms could have been from high calcium or overlapping with them. 

I'm being referred for a genetic test for Familial hypercalcuric hyperglycemia (FHH) as my endocrinologist thinks that's the cause because my calcium urine levels are low.  I guess it's process of elimination but just frustrating that it's dragging on for so long 

Hi its all a mine field ..I had hysterectomy  due to PMDD ,I did 6 months on chemical menaupause..no hrt  as am progesterone  intolerant too , ...tbh doctors know nothing .. cant get to see gyne consultants  often ..only seen them 3 times b4 I had hysterectomy,, so Google alot lol ..my conclusions from today ...oestrogen sending signals to thyroid glands causing auto imune to click off(allergies and exzema worse) ,this can cause bones to dump calcium I think this is what I've read ,,I'm not brainy enough for all this medical jargon ..ovarian malfunction can cause calcium dumps , I've had my ovaries removed so no eostrogen been maid for 6 months including chemical menopause..I had very little exzema or allergies,  when I started using patches they started  again , hot baths or heat can cause patches to eostrogen  dump .. so I've come to my not very highly educated mind that these might have caused calcium  dump ????

Not sure but that's an interesting theory.  Hyperactive parathyroid glands are often the cause of raised calcium in most cases but it sounds like estrogen has been causing your body to react  quite a bit,  with allergies.  One thing I realise and appreciate now is just how powerful our hormones actually are and the effect they have on us both physically and mentally.  I definitely think the immune system could be involved as an imbalance in a chemical/ hormone/ electrolyte etc. could  cause our bodies to react or defend itself in ways that could illicit an immune response.... but I'm no expert either so just a thought!

Like your thinking :) ,, go the googlers ..

 sorting out to being our best selves x