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Parathyroid issues - I am so concerned about my dsis health, worried she has something very serious going on

3 replies

HowdoIgetbacktothe80s · 18/03/2023 11:34

I am getting so worried about my sisters health issues and angry that the hospital appear to be taking so long investigating her issues.

Around 16 months ago my 48 year old dsis went to the GP because she was having a lot of pelvic pain. She had been diagnosed with endometriosis 4 years previously and wondered if it was due to that returning.
The GP did a series of blood tests and it cam back with high calcium levels in her blood and urine also.
Her vitamin d levels were also very low so they wanted her to take some high strength vitamin d and test again a few months later. After a while they were happy with the levels.
They also sent her for heart testing as she had been on Amitriptyline and GP was concerned as her initial tests did show something. Although after several months of tests her heart came back as clear.
She then had to wait for months to see an endocrinologist, she said dsis may have a parathyroid issue (she does also have an under active thyroid).
They kept ordering blood and urine tests over a period of months she heard nothing for ages, kept chasing but kept being told an appointment would come through. This went on for most of last year.

She then was given a radioactive scan and CT scan two weeks ago.

The endocrinologist called her yesterday to say that the thyroid is definitely diseased with a parathyroid issue (the parathyroid gland will need to be removed) but they are quite concerned because her blood and urine are showing very high levels of calcium.
She is also concerned because the CT scan showed up ‘something’ on dsis chest and they now want to rescan.
Dsis isn’t good at asking questions and tends to bury her head in the sand when it comes to health issues so she didn’t ask what this chest issue could be (chest wall, breasts, lungs?).
She has also felt a few ‘lumps’ in the last week. One in her shoulder blade area and a few on the collarbone area. She has started to feel like a cold coming on so I am hoping that’s just a viral thing!
Tbh, I haven’t said anything to her but I am really concerned about all of this and can not stop worrying (I do have awful health anxiety though and study everything regarding health).
Has anyone has anything like this? This seems like it could be serious. I am hoping amongst all hope that it’s not but if it’s is I am so angry at the hospital for faffing about for well over a year.

OP posts:
Muddlebubble · 18/03/2023 12:20

Im also going through this myself, it has been wayyy before covid when they first picked up i had low vitamin d and high calcium.

Like your sister keep havung urine tests and blood test with no results, its exhausting and worrying because everywhere i read it seams to be rather dangerous.

Sorry no advice but i know how it feels

HappyHamsters · 18/03/2023 12:24

Would your sister like you to help her write down some questions or accompany her to any appointments, is she waiting to speak to the doctor about her results

HowdoIgetbacktothe80s · 18/03/2023 13:32

Muddlebubble I am sorry you are experiencing the same thing, it’s so very frustrating when they take so long between appointments. I hope you get some answers soon.
HappyHamsters I have offered to come with her with pen and paper so we can jot everything down but the consultant called her yesterday. Hopefully we will have some more answers after this repeat scan.

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