Posted , 6 users are following.
It's now 5months since I had a parathyroid tumour removed . I thought I would be back to full fitness but unfortunately I'm still feeling tired with no energy. I've had my blood results back and other than my calcium being a little low now all seems to be fine. As anyone else had the same problem. ? Thanks Maggie
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anne10359 maggie7848
Posted
anne10359 maggie7848
Posted
Reading about you trying to get enough calcium just by diet, Julie, I don't know that that is possible until your remaining parathyroids start working reliably. Our bodies need more calcium now, HEAPS more calcium, partly because so much of it drains into our bones.
You ladies have to replenish your depleted bones, where my bones (and the bones of one other woman I have talked with on facebook on the Australian page) are great. I had a bone density test just weeks before my op and my bones were above average even then, after 7 years of raised calcium showing I had an adenoma!
But if I get muscle twitching, cramping, feel like I have a bladder infection...all low calcium symptoms...even now, I take a handful of calcium straight away. I believe that my parathyroids intermittently don't work for a while, but then kick in again. I also take regular calcium, magnesium and vit D (in the same pill) daily.
I am in Australia and am a horsewoman, but even with being outside a lot, I still need that extra vit D.
Enjoying this chat. We are definitely not alone...just many people go undiagnosed for way too long!
julie99798 anne10359
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Hi Anne,
I get about1300 mg calcium through diet daily, take 4000 iu vitamin d and then lots of exercise high impact and weight. Dr said didn't need magnesium my levels are good.
I had high calcium for about 10 years.
My endo told me to lose weight on my last visit when she put me on calcium from diet only boy was I shocked how do you lose weight on high calcium mostly dairy.
I got busy and when I cut out both sugar and carbs except what I get from high fat dairy and other good stuff I have been able to lose ten pounds. I did not think size 8 was a problem but at 5'3" and para I guess weight gain can get out of hand. Was size 6 less than a year ago so I did gain quite a bit.
You mentioned the brain fog when stressed. I have noticed the same thing when rushed or nervous.
The other day I actually had to come home from work early because I kept having dizzy spells. Don't know if low blood pressure or what. It has passed but I have been a little more tired than usual.
Just glad to be getting better and so glad I am finally reaching out to understand more about this.
Julie
anne10359 julie99798
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Hi Julie, I hadn't bothered taking magnesium either till I joined the Hyperparathyroid facebook page in Australia. They were talking about how magnesium is necessary to facilitate calcium working well and I figured that it made sense. Magnesium helps us to not accumulate calcium in our muscles or something like that. Another thing we have a higher need for is salt. Again I am not sure why, but I do know that if I don't eat much salt I will get quite ill. I feel weak and shaky and get crampy.
Apparently gingkho biloba is helpful with brain fog, so I decided it wouldn't hurt to try it. Haven't been under stress since I started it, so I am not sure whether it works or not.
I am quite fascinated with the fb pages, many stories of many people with this and lots of sharing going on.
julie99798 anne10359
Posted
Anne,
You are a great source of information. I did not know about salt issue since I have always had low blood pressure I have not held back on salt intake but as salt is one of those not good for bones things and I have quit eating processed foods I have really been having cramping issues.
It is hot here and I do sweat a lot so I am now upping salt use.
I have not mentioned that I have a large benign module on my thyroid I thought they would just remove it when they had my neck open but I guess they don't do that. Do those things ever cause any problems. They are doing a ultra sound on it again in September along with having my dexa scan done.
Julie
anne10359 julie99798
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I don't know about thyroid nodules. Mine was all inflamed because I had graves disease.
nicole1121 maggie7848
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Hi Maggie,
I could cry reading these posts. I am 6 weeks out of surgery and still have muscle fatigue, cramps and intermittent pins and needles in my arms and feet. My endo says all my levels are normal so I'm fine, but I keep telling him I don't feel fine. I felt better when I had my tumor. I had my surgery in Tampa and they sold it to me like I'd be a new woman when I walked out of the hospital. My parathyroid glands still haven't woken up and I'm scared that they never will. I wish there was someone on here saying they went through the same thing and they are perfect now. I was a healthy girl before my surgery...I'm only 39 and my tumor was over 10 yrs old so I was told it could take a little longer for me to feel better. I cry everyday wishing I could just feel good again! My endo makes me feel like I'm crazy when I tell him I'm having muscle weakness and cramping and he tells me all my levels are normal. I need some hope that this will pass and I'll feel normal again.
anne10359 nicole1121
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I get intermittent times of cramping, Nicole. When I do, I take a handful of calcium tablets and that helps. I am sure my other parathyroids sort of "stick" forgetting to turn on as needed. Your symptoms are low calcium symptoms. Take calcium with vit D and it should help a lot. You also possibly need more salt. We have a higher need for salt than most people do and magnesium can be the other key.
I am 5 years post surgery but still occasionally get low calcium symptoms. One of them is feeling like I have a bladder infection. But it is manageable...just always have lots of calcium on hand to take when the symptoms occur. I don't take it on a regular basis...just when my body tells me I need it.
Good luck.
Anne
tara1967 nicole1121
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Hi Nicole,
You are definately not alone. I had my surgery in Tampa four months ago and I'm still struggling in many areas. What was your calcium and pth levels when they checked them last? I've been having muscle twitches for the past few months and fatigue and a weak feeling. My last calcium check was 9.1 but I just don't feel like myself. My last pth was 13, but even before surgery it never went high. It was always low normal, which makes me wonder if the two I have are even working right. Do you live in Florida or just went there for your surgery? I hope we can figure all of this out and get to feeling "normal" again! Look forward to hearing from you! Tara
nicole1121 tara1967
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Hi Tara,
My PTH was 18 last week and my Calcium was 9.2. I live in Nashville but flew to Tampa to have surgery with "the best." They are good doctors but even better sales people. Anyway, I'm currently taking 500 mg of Tums 2x a day and .25mcg of Calcitriol 2x a day. My Endocrinologist took me off of Magnesium 10 days ago. He's about to lower my Calcitriol now too. I have anxiety every time he lowers my meds but so far so good until a couple of days ago. I'm at the lab now getting my Calcium, Magnesium and Potassium run. I'm keeping my fingers crossed 🤞🏽
tara1967 nicole1121
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Your numbers are a lot like mine. Make sure they are keeping a watch on vitamin d as well. Mine has fell each time they checked it, and I have been on supplements. My family doctor seems to think that my body is "fighting" these new calcium levels because my calcium had been high for over 10 years. I'm trying to get an appt. with an endocrinologist, maybe they can help because right now it's all a guessing game and I'm just experimenting with calcium supplements. This is all so crazy! I live in Georgia by the way. Let me know what the latest labs show. It's nice to know I'm not alone on this journey.
julie99798 tara1967
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I am 6 months out from surgery and get better every day I found a good surgeon and endocrinologist here in Texas because I was afraid of no after care. As it is they also don't always know how to proceed with this disease I guess because each of us reacts differently.
I have been strictly on calcium from food (1300mg)for the past 8 weeks and vitamin d (4000 iu) I seem to be doing well with this.
Dexa scan and blood tests in September will tell if this route has worked for my osteoporosis.
Hang in there girls I was in such bad shape from this that I may be a little to excited about my improvements but for me I have a life that was going down hill very fast back and I love it
Julie
tara1967 nicole1121
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Nicole,
I know how it is for doctors to tell you that your labs are normal but you certainly don't feel normal! We know our bodies and when something doesn't feel right. Hang in there and keep me posted please! It helps to just talk to someone who understands what you're going through! I agree about the Norman Center. They are awesome surgeons but I wish they would post something on their website other than people who are doing cartwheels the day of surgery!😊
anne10359 maggie7848
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They reckon that the longer you had your adenoma before surgery, the longer it is likely to take for your body to find a good balance later on. Partly our bodies are not accustomed to correct levels of calcium. Don't forget that salt is really important too. Electrolyte replacement can be a big help.
tara1967 anne10359
Posted