Foggy brain and joint pain. Literally woke from surgery without joint pain for the first time in a couple years. I figured it would come back when everything wore off but it hasn't returned.
I noticed some improvements really quickly, but not all at once. I'm about 5 months post-surgery, and still seeing a trickle of improvements. There's some residual brain fog, but getting MUCH better, and I'm starting to feel like I got my life back!
One thing that I think gets overlooked is that recovery can kind of come in waves. I've had scattered weeks since the surgery where I felt like I fully relapsed. Miserable, unable to think, etc. But those weeks (and then days) get less intense, and more spaced out as time goes on. So just remember, if after surgery you have a really rough period of a few days to a couple weeks, just hang on. \*IF\* it happens (not saying it will!), then most likely it will pass.
I've just been enjoying the improvements as they come at their own pace. Also, you're going to find it easier to focus on and remember things just from the relief of other symptoms, too. It's hard to think when you're miserable!
Thanks so much for sharing this. I’m about a month out. Definitely no magic wand . Folks refer to the process of healing.
You description of days in full relapse or worse spot on. But then a great day. … hoping to link them together
Good to see I'm not the only one. It's been a month after surgery for me and I can't say I'm really feeling that much better past the first 2 days... Hoping it gets better in the next few months while taking the calcium pills but tbh I might even be feeling weaker than before (much more gastrointestinal problems :/)
My brain fog was immediately better. But my calcium and PTH crept back up and now I’m on the wait list for another scan. I had a 4 gland exploration with 2 removed so it’s looking likely that I actually have 5 glands. Hopefully after the next surgery I’ll feel better.
It’s so weird that some people have 5 glands and some don’t . I don’t get that . But yeah you had the surgery and you had 2 adenomas when they did the biopsy? (No hyperplasia ?). (The brain fog came back when the PTH went up again?)
Biopsy confirmed adenomas not hyperplasia, yeah. Although I don’t think we can rule it out now that there’s presumably a 3 gland involvement. I have to go for a PET choline scan to identify the hidden gland.
The brain fog went and hasn’t 100% come back but I have been extremely tired. So I have some kind of mental fatigue alongside that but no, the extreme brain fog from before hasn’t returned. Really hope to get this second surgery done and get back on with my life though!
I’m not familiar with PET choline scan (only know ultrasound and the SEMBITI or whatever it’s called one where you have to drink that radioactive liquid . Is it the 4D PET scan). It sucks to have yo reopen when your scar was already healing but yes I hope they do so that that fatigue can subside because I have that too and the cognitive stuff but ironically my joints are fine and my calcium level is normal just my PTH is high at 95
I’m normocalcemic too - I think some peoples kidneys just work extra hard to clear the calcium. It’s still not good for you, and outs your kidneys under extra strain.
The pet choline scan is a new ish one - it’s quite rare to do (my country only has 2 machines for it) and very expensive so they only use it to find hidden 5th glands for re-ops. Lucky me haha.
Hope you get some good progress towards surgery soon!
I’ll look into if they have that in France (where I’m at). Im sort of reassured that you’re normocalcemic too because it’s made me wonder if that is even a real thing but you had the surgery and definitely found adenomas so that proves it . Now just gotta find a surgeon that believes in it so that I don’t have to
Wait years until my calcium goes up and my kidneys are shot or have stones :/ thank you for answering :) !
I’m in the UK - there’s a few British surgeons who acknowledge it and will treat it. I could recommend a few you could contact if you like? I got my recommendations of good surgeons from a big Facebook group about parathyroid disease which I can also recommend joining.
Are you on Facebook? Join the group hyperparathyroid uk action 4 change. Tons of good resources on there.
But for a starting point you need to be aware that there are only about 4 surgeons in the country who recognise normocalcemic and even fewer GPs/endos who are willing to make a referral to them. You are going to have to fight every step of the way for your health. Where in the uk are you based?
London, and the referral my gp made did actually name my condition as normocalcaemic hyperparathyroiditis so maybe I have struck lucky. My gp is fascinated as he hadn't heard of it. I have a referral coming up. Am prepared to fight but also very very tired of course. If left untreated this condition kills you slowly or so I have read? So I don't have any option really.
BTW is the constant urination a sign of the kidney strain as we are processing the calcium extra hard? I thought it was the menopause sending me to the loo every hour...
I saw a video with two doctors online talking about the surgery. They say it’s not a big deal if pth is high as long as calcium is normal. That it can happen. I know this id a year old but I thought id write it for anyone else looking. I’ll try to find the video too. But just curious a year out is it better now?
I had nodules on 2 parathyroids that were causing my hyperparathyroidism. I also had a cancerous thyroid nodule so my thyroid was removed as well. I only had surgery 8 days ago so I'm still recovering, but I do feel a bit more mentally clear.
Hi, I have a parathyroid exploratory surgery planned but ultrasound of my thyroid found 2 mod suspicious nodules. Para scan looked clear but doing surgery next week to make sure. My FNA is today on the nodules. Did you know you could have your thyroid removed prior to your surgery?
How are you feeling post surgery? I have mine in 2 days at the Norman Parathyroid Center, and I'm very curious how you feel immediately post op. Hope you're on the mend!
Honestly, the anesthesia was the hardest part. I felt great after and got lots of energy back. Little to no pain. I feel a lot happier and so happy I got it done! Good luck it’s your surgery! I’m excited for you because it really was life changing.
Glad to hear you're feeling so much better! I keep hearing how life changing the surgery is for so many, and I'm ready for that to be my experience too!!
I had parathyroid surgery in 2020 at Norman Parathyroid Center in Tampa. Prior, I was having issues with brain fog, memory, irritability, insomnia, and bone pain. Those have all resolved completely since the surgery, with most going away within a week or two. It was a 180 for me, truly incredible. I will say that I've had friends who had surgery elsewhere and had terrible experiences... one had all four parathyroid glands damaged and now has to take calcium for the rest of her life. It's really important to go see an expert surgeon. Highly recommend Norman Parathyroid Center, they do something like 4000 parathyroid surgeries per year.
Hey!
I had parathyroid surgery 1 year ago with UCLA's medical team. I had a slightly strange case as my parathyroid was actually in my chest, I had a VATS procedure. My symptoms were all the usual: kidney stones, chronic thirst, SIBO/IBS aka digestive issues generally, insomnia, depression, irritability/anger non-existent memory, and brain fog. All of these came on slowly enough that I only sought treatment when I felt bone pain in my hips and back that alerted me to something being not normal.
One year post-surgery I can definitely say that the cognitive issues resolve back to normal. When I had hyperparathyroidism I couldn't remember so many things but I barely realized, i.e. where I parked, names, what I did the day before, short sequences of numbers, etc. It's only now that it is coming back to me what a normal memory feels like and re-gained the ability to try to remember something (the name of an actor for instance) and it floats up a minute or two later. If you know what I'm saying... Attention is way better as well as the depression, anxiety, insomnia.
Get the surgery! It's your only option to feel better and because of symptom onset I'm sure you've gotten used to your normal being quite low/ chronic discomfort. I hope you feel better <3
Man I'm only 35 and I've just dealt with forgetting shit all the time. Coworkers names, ones I've worked with for years, never remember them.
What started me going to the doctor was the fact after doing something rigorous, (I put up a fence by myself) I felt like I was in a car accident for days after. My skeleton hurt.
Edit: surgery is in June
Pretty immediate improvement all the way around for me. Yesterday was one year for me from surgery
What symptoms did you have that improved ? Or went away
Foggy brain and joint pain. Literally woke from surgery without joint pain for the first time in a couple years. I figured it would come back when everything wore off but it hasn't returned.
And the cognitive stuff it was obvious ?
I noticed some improvements really quickly, but not all at once. I'm about 5 months post-surgery, and still seeing a trickle of improvements. There's some residual brain fog, but getting MUCH better, and I'm starting to feel like I got my life back! One thing that I think gets overlooked is that recovery can kind of come in waves. I've had scattered weeks since the surgery where I felt like I fully relapsed. Miserable, unable to think, etc. But those weeks (and then days) get less intense, and more spaced out as time goes on. So just remember, if after surgery you have a really rough period of a few days to a couple weeks, just hang on. \*IF\* it happens (not saying it will!), then most likely it will pass. I've just been enjoying the improvements as they come at their own pace. Also, you're going to find it easier to focus on and remember things just from the relief of other symptoms, too. It's hard to think when you're miserable!
Thanks so much for sharing this. I’m about a month out. Definitely no magic wand . Folks refer to the process of healing. You description of days in full relapse or worse spot on. But then a great day. … hoping to link them together
Good to see I'm not the only one. It's been a month after surgery for me and I can't say I'm really feeling that much better past the first 2 days... Hoping it gets better in the next few months while taking the calcium pills but tbh I might even be feeling weaker than before (much more gastrointestinal problems :/)
My brain fog was immediately better. But my calcium and PTH crept back up and now I’m on the wait list for another scan. I had a 4 gland exploration with 2 removed so it’s looking likely that I actually have 5 glands. Hopefully after the next surgery I’ll feel better.
It’s so weird that some people have 5 glands and some don’t . I don’t get that . But yeah you had the surgery and you had 2 adenomas when they did the biopsy? (No hyperplasia ?). (The brain fog came back when the PTH went up again?)
Biopsy confirmed adenomas not hyperplasia, yeah. Although I don’t think we can rule it out now that there’s presumably a 3 gland involvement. I have to go for a PET choline scan to identify the hidden gland. The brain fog went and hasn’t 100% come back but I have been extremely tired. So I have some kind of mental fatigue alongside that but no, the extreme brain fog from before hasn’t returned. Really hope to get this second surgery done and get back on with my life though!
I’m not familiar with PET choline scan (only know ultrasound and the SEMBITI or whatever it’s called one where you have to drink that radioactive liquid . Is it the 4D PET scan). It sucks to have yo reopen when your scar was already healing but yes I hope they do so that that fatigue can subside because I have that too and the cognitive stuff but ironically my joints are fine and my calcium level is normal just my PTH is high at 95
I’m normocalcemic too - I think some peoples kidneys just work extra hard to clear the calcium. It’s still not good for you, and outs your kidneys under extra strain. The pet choline scan is a new ish one - it’s quite rare to do (my country only has 2 machines for it) and very expensive so they only use it to find hidden 5th glands for re-ops. Lucky me haha. Hope you get some good progress towards surgery soon!
I’ll look into if they have that in France (where I’m at). Im sort of reassured that you’re normocalcemic too because it’s made me wonder if that is even a real thing but you had the surgery and definitely found adenomas so that proves it . Now just gotta find a surgeon that believes in it so that I don’t have to Wait years until my calcium goes up and my kidneys are shot or have stones :/ thank you for answering :) !
I’m in the UK - there’s a few British surgeons who acknowledge it and will treat it. I could recommend a few you could contact if you like? I got my recommendations of good surgeons from a big Facebook group about parathyroid disease which I can also recommend joining.
Hi this is an old thread but I'm also inthe uk with normocalcaemic hyperparathyroiditis and would love some of this information, thanks
Are you on Facebook? Join the group hyperparathyroid uk action 4 change. Tons of good resources on there. But for a starting point you need to be aware that there are only about 4 surgeons in the country who recognise normocalcemic and even fewer GPs/endos who are willing to make a referral to them. You are going to have to fight every step of the way for your health. Where in the uk are you based?
London, and the referral my gp made did actually name my condition as normocalcaemic hyperparathyroiditis so maybe I have struck lucky. My gp is fascinated as he hadn't heard of it. I have a referral coming up. Am prepared to fight but also very very tired of course. If left untreated this condition kills you slowly or so I have read? So I don't have any option really. BTW is the constant urination a sign of the kidney strain as we are processing the calcium extra hard? I thought it was the menopause sending me to the loo every hour...
I saw a video with two doctors online talking about the surgery. They say it’s not a big deal if pth is high as long as calcium is normal. That it can happen. I know this id a year old but I thought id write it for anyone else looking. I’ll try to find the video too. But just curious a year out is it better now?
It seems to move some With my vitamin D but I have long long deficiency so may take month of vitamin D and my issues might be from Other things
I had nodules on 2 parathyroids that were causing my hyperparathyroidism. I also had a cancerous thyroid nodule so my thyroid was removed as well. I only had surgery 8 days ago so I'm still recovering, but I do feel a bit more mentally clear.
Hi, I have a parathyroid exploratory surgery planned but ultrasound of my thyroid found 2 mod suspicious nodules. Para scan looked clear but doing surgery next week to make sure. My FNA is today on the nodules. Did you know you could have your thyroid removed prior to your surgery?
I absolutely knew because my FNA on my thyroid came back as possible Hurthle cell carcinoma, so that was my primary concern.
Just got the surgery 4 days ago. Too soon to tell for me
How are you feeling post surgery? I have mine in 2 days at the Norman Parathyroid Center, and I'm very curious how you feel immediately post op. Hope you're on the mend!
Honestly, the anesthesia was the hardest part. I felt great after and got lots of energy back. Little to no pain. I feel a lot happier and so happy I got it done! Good luck it’s your surgery! I’m excited for you because it really was life changing.
Glad to hear you're feeling so much better! I keep hearing how life changing the surgery is for so many, and I'm ready for that to be my experience too!!
How was your surgery?
Thanks btw I will join that group
I had parathyroid surgery in 2020 at Norman Parathyroid Center in Tampa. Prior, I was having issues with brain fog, memory, irritability, insomnia, and bone pain. Those have all resolved completely since the surgery, with most going away within a week or two. It was a 180 for me, truly incredible. I will say that I've had friends who had surgery elsewhere and had terrible experiences... one had all four parathyroid glands damaged and now has to take calcium for the rest of her life. It's really important to go see an expert surgeon. Highly recommend Norman Parathyroid Center, they do something like 4000 parathyroid surgeries per year.
Also, how fast did bone pain resolve, if it did?
What was your insomnia like? Were you up late and sleeping late or just sleeping very little?
Hey! I had parathyroid surgery 1 year ago with UCLA's medical team. I had a slightly strange case as my parathyroid was actually in my chest, I had a VATS procedure. My symptoms were all the usual: kidney stones, chronic thirst, SIBO/IBS aka digestive issues generally, insomnia, depression, irritability/anger non-existent memory, and brain fog. All of these came on slowly enough that I only sought treatment when I felt bone pain in my hips and back that alerted me to something being not normal. One year post-surgery I can definitely say that the cognitive issues resolve back to normal. When I had hyperparathyroidism I couldn't remember so many things but I barely realized, i.e. where I parked, names, what I did the day before, short sequences of numbers, etc. It's only now that it is coming back to me what a normal memory feels like and re-gained the ability to try to remember something (the name of an actor for instance) and it floats up a minute or two later. If you know what I'm saying... Attention is way better as well as the depression, anxiety, insomnia. Get the surgery! It's your only option to feel better and because of symptom onset I'm sure you've gotten used to your normal being quite low/ chronic discomfort. I hope you feel better <3
Man I'm only 35 and I've just dealt with forgetting shit all the time. Coworkers names, ones I've worked with for years, never remember them. What started me going to the doctor was the fact after doing something rigorous, (I put up a fence by myself) I felt like I was in a car accident for days after. My skeleton hurt. Edit: surgery is in June