primary hyperparathyroidism concerns: I am 57 y-o... - Thyroid UK

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primary hyperparathyroidism concerns

TibbsBear17 profile image

I am 57 y-o male. In early October 2018, I underwent ureteroscopy for 7 mm stone from left kidney and had stent inserted. Surgery went ok and I was discharged. I was asked to give 24 hour urine collection for analysis and returned 3 weeks later to have stent removed. An ultrasound revealed that I still had several small stones in left kidney and also there was some swelling to the kidney. Nurse checked with consultant that it was still ok to remove stent and he said that it was ok. Stent was removed and everything seemed ok but the nurse wanted me back in 3 weeks for another ultrasound to monitor swelling. In the meantime, the urine analysis showed 'volumes 1694 and 2326 demonstrating hypercalciuria 11.9 mmols/24 hr, hypermagnesuria 6.07 mmol/d, normal alkaline screen, evidence of hyperparathyroidism, PTH 5 mmol/L, serum calcium adjusted 2.71 mmols/L'

Consequently, I have been referred to an endicrinologist who took a blood test, which apparently came back with normal calcium levels. and made me an outpatients' appt. in March 2019. I returned for the second ultrasound re swelling and was told that it was still swollen and have heard nothing more. My concern is that, for the last 3 weeks and I have been constantly nauseous 24/7 to the point that even the thought of food makes me want to vomit. I don't have a history of anxiety or stress and it is not a tummy bug. This feeling is 24/7. It doesn't come and go and it is the same level constantly. I have never had this before in my life. I don't want to wait 3 months before I'm seen by somebody as this is driving me insane. Can someone suggest what they think I should do. It would be greatly appreciated.

11 Replies

"I don't want to wait 3 months before I'm seen by somebody as this is driving me insane. Can someone suggest what they think I should do"

I agree that you should not wait 3 months, and not even 3 weeks or 3 days.

I would call your primary care physician's office and explain how you feel: "constantly nauseous 24/7 to the point that even the thought of food makes me want to vomit"

I would request to be seen ASAP.

If your primary care team cannot see you very soon, I would consider going to an urgent care clinic. You should not have to suffer like this.......

Please keep me posted on how it goes........

Best wishes

jimi18 profile image
jimi18 in reply to rjb112

Thank you for responding. I've been told, unofficially, that it's highly unlikely that my symptoms are due to primary hyperparathyroidism as my calcium levels are only marginally above normal. It seems the main suspect is the swelling on my kidney to which end my doctor wants me to have another blood and urine test. I'm also booked in to have another ultrasound on the 17th December. Symptoms still persist but am actually getting used to them! Have lost some weight but I'll be ok, I'm sure.

rjb112 profile image
rjb112 in reply to jimi18

OK, sounds like things are at least a little better now.

So glad to hear it.

Best wishes

jimi18 profile image
jimi18 in reply to rjb112

I was so fed up that I went to an out of hours clinic and was diagnosed with gastritis last week (based on physical examination; i.e. no tests or scans) and was prescribed Omeprazol. I felt relieved but after a week of feeling exactly the same, I'm not convinced. Am still awaiting the results of my blood and urine tests.

rjb112 profile image
rjb112 in reply to jimi18

OK, sounds like you are pursuing this in a good manner. Hopefully you will get to the bottom of this and get a resolution. Best wishes with this.

jimi18 profile image
jimi18 in reply to rjb112

Thank you for caring. It probably sounds like I'm a whinger and it's trivial and I know there's a whole lot of people battling worse than I've got out there but it does bug me the more it drags on and takes away most of my enjoyment. Do you have any problems you want to share?

rjb112 profile image
rjb112 in reply to jimi18

"It probably sounds like I'm a whinger and it's trivial"

It sounds to me that you have genuine issues, and very significant ones at that.

You mentioned that: "for the last 3 weeks and I have been constantly nauseous 24/7"

To me that would be practically unbearable. You're a champion for putting up with that.....

"Do you have any problems you want to share?"

I don't believe that my thyroid is well managed. I'm cold......energy levels are too low......etc

My primary care physician uses TSH to manage thyroid.........she doesn't seem to care about the levels of the thyroid hormones themselves.....

Looks like I will have an uphill battle to address this, but I'm planning to in 2019.

jimi18 profile image
jimi18 in reply to rjb112

"Looks like I will have an uphill battle to address this, but I'm planning to in 2019."

You sound pretty determined. I hope things improve for you soon.

"she doesn't seem to care about the levels of the thyroid hormones themselves"

I think 'care' is the interesting concept here. I think I could tolerate my condition better if I thought the doctors (physicians and surgeons) cared about, and listened to, me but I don't think they do; maybe I'm being naive. Anyway, I do hope things pick up for you. Have you had this condition long?

rjb112 profile image
rjb112 in reply to jimi18

"I think 'care' is the interesting concept here. I think I could tolerate my condition better if I thought the doctors (physicians and surgeons) cared about, and listened to, me but I don't think they do; maybe I'm being naive. Anyway, I do hope things pick up for you. Have you had this condition long?"

Right.....I think the doctors have so little time to spend with each patient.....and have so many patients now......that most of them don't give personalized care.....and don't listen enough to the patients.

Yes, I've had hypothyroid for a minimum of 15 years now.

I did have one success this year: I finally got my doctor to order a free T3 test (along with free T4, which she was already ordering) !

She didn't appear to pay any attention to the results of that free T3 test, but at least it's a start!

I've read many posts on this board over the past several months, as well as many articles that have been linked here......so I have some definite points and issues to discuss with my doctor about the thyroid.

What makes it more difficult is that I don't know if some of my symptoms are caused by hypothyroid versus other issues, such as poor sleep. If I was clear on that, I could proceed forward much better.

jimi18 profile image
jimi18 in reply to rjb112

"Yes, I've had hypothyroid for a minimum of 15 years now."

OMG! I don't know what to say. Have you had any surgery? Has your condition improved at all over that time?

"What makes it more difficult is that I don't know if some of my symptoms are caused by hypothyroid versus other issues, such as poor sleep. If I was clear on that, I could proceed forward much better."

That's a problem. I really hope things get better for you. Hopefully, we'll both come through our issues very soon.

rjb112 profile image
rjb112 in reply to jimi18

Hi jimi18.

"Have you had any surgery? Has your condition improved at all over that time?"

No, I haven't had surgery......other than oral "surgery" where I had my wisdom teeth removed......which I now regret ! I should not have trusted the dentist who told me I needed them removed. It affected my eating very negatively, something I would have never guessed it would do.

My lesson learned: do not trust doctors or dentists until you do full due diligence and make sure what they have advised is correct for you. So maybe it was worth it, just learning this lesson. It can prevent me from making a much worse mistake in the future. Now I am very leery of doctors and dentists and will fully research everything and make the final decision myself.

Yes, I think my hypothyroid condition has improved somewhat since I started treatment (levothyroxine) about 15 years ago. I was lucky to have a good primary care MD at that time. He diagnosed me and started treatment (levothyroxine) even when my TSH was only very slightly elevated, and I think many MDs would not have made the diagnosis of hypothyroidism at that time.

"Hopefully, we'll both come through our issues very soon."

Yes, the very best wishes to you.

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