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Could ALL this = hyperparathyroidism
For the past 6 months, I've been experiencing an onslaught of seemingly vague and unrelated symptoms. At my last bloodwork check, my calcium was on the high side (10.6) and when I looked back about a year ago it was also high normal (10.3)
My symptoms started with both legs just feeling a bit heavy (hard to explain...not pain just a bit heavier than normal). My blood pressure has been higher than normal. Then came tremors, fatigue now and then, some anxiety (could just be worry for the symptoms), general feeling of malaise...
My PTH test has been ordered. From my research (parathyroid.com), with the exception of the tremors, I believe these could all be related to hyperparathyroidism. Anyone know if tremors could be cause by this disorder too? At this point I am PRAYING it is this just to get an answer. I don't want to be sick but given some of the alternatives I'd be happy with this diagnosis!
My symptoms started with both legs just feeling a bit heavy (hard to explain...not pain just a bit heavier than normal). My blood pressure has been higher than normal. Then came tremors, fatigue now and then, some anxiety (could just be worry for the symptoms), general feeling of malaise...
My PTH test has been ordered. From my research (parathyroid.com), with the exception of the tremors, I believe these could all be related to hyperparathyroidism. Anyone know if tremors could be cause by this disorder too? At this point I am PRAYING it is this just to get an answer. I don't want to be sick but given some of the alternatives I'd be happy with this diagnosis!
I noticed that you had also posted on another thread. From that it seems like you are going in the right direction by going to the clinic for diagnosis and treatment. I have had some very good feedback from a patient there.
This is some info you should be aware of. I also may have some additional useful info for you. First, please post results from any Vitamin D test you have had.
Can you please post an update on how you are feeling after surgery and whether your symptoms resolved? I am a 40-yr-old working mom of three and have been miserable for 3-4 years now. Have had calcium levels range from 9.8-11.1 since 2012. Most recently 10.8. I feel trembly and have tremors all the time in addition to anxiety, insomnia, blood pressure spikes, and lots of heart palpitations which are the worst. I feel tired, irritable, and cranky all the time. My Sestamibi scan was negative and PTH is normal from 38-48. Would love an update on whether surgery helped you to feel better. I am not a routine case but hope surgery will solve this mystery. Been to every doc under the sun from cardiologist to psychiatrist to ER and no one seems to have answers. Thanks so mucho.
Awoke to no results yet.....any day now!!! So what's your next step then? If the scan said it "may" be an issue, do you just go ahead and have the surgery? Or are there other steps you need to take to confirm it?
It was nice of you to post at 3AM. You are right that it's good for people to see that they are not alone. That in and of itself is probably the only comoforting thing when dealing with something like this!
It was nice of you to post at 3AM. You are right that it's good for people to see that they are not alone. That in and of itself is probably the only comoforting thing when dealing with something like this!
So, here it is 3:00AM, and I can't sleep. Again. And I'm doing the shake, rattle and roll. Again. *eye roll* I thought I should post this in the public forum, just in case someone else is following this conversation and needs the info. But please feel free to PM me anytime.
To answer your question, I had the sestamibi scan, which is supposedly the most accurate one for parathyroids. It was a two-part appointment. At the first appointment, they gave me the radioactive iodine capsules. There were seven of them. Then, I had to go away for three hours.
At the second appointment, they gave me the sestamibi injection, and I had to sit for 20 minutes while that circulated. Then, I was put on a table, wrapped in a velcro blankie thing so I couldn't move, and the scan started. They took several different views where I had to be perfectly still for 10 minutes, and then some where the machine rotated around me, and those took 23 minutes each. Altogether, I was on the table for about 90 minutes, but the technician let me take a break. Plus, he was very personable, so it wasn't nearly as bad as I had thought it would be. The only time I got a little freaked out was when that big plate was slowly moving down towards my face and there I was more or less strapped down. Aaaaaack! LOL But it was a very short freak out, and the technician talked me through it.
I know exactly what you mean when you say you hope the PTH comes back high. I felt positively vindicated when mine did. It was a true AHA! moment. So, let me know what you find out today. Like I said before, PM me anytime.
To answer your question, I had the sestamibi scan, which is supposedly the most accurate one for parathyroids. It was a two-part appointment. At the first appointment, they gave me the radioactive iodine capsules. There were seven of them. Then, I had to go away for three hours.
At the second appointment, they gave me the sestamibi injection, and I had to sit for 20 minutes while that circulated. Then, I was put on a table, wrapped in a velcro blankie thing so I couldn't move, and the scan started. They took several different views where I had to be perfectly still for 10 minutes, and then some where the machine rotated around me, and those took 23 minutes each. Altogether, I was on the table for about 90 minutes, but the technician let me take a break. Plus, he was very personable, so it wasn't nearly as bad as I had thought it would be. The only time I got a little freaked out was when that big plate was slowly moving down towards my face and there I was more or less strapped down. Aaaaaack! LOL But it was a very short freak out, and the technician talked me through it.
I know exactly what you mean when you say you hope the PTH comes back high. I felt positively vindicated when mine did. It was a true AHA! moment. So, let me know what you find out today. Like I said before, PM me anytime.
Brigee, THANK YOU SO MUCH! OMG that inside tremor is EXACTLY WHAT I GET! Particularly in the middle of the night when I'm moving around in bed. It is so bad I have a neurologist appt scheduled but depending on what my PTH looks like I may cancel that. What type of scan did you get? One of those setambi scans or whatever they are called or just an MRI/CAT? Your post made me feel so much better just knowing someone else knows what I am talking about. Let me know how you are doing. I am fortunate to have a good endo parathyroid center nearby in Philly if it comes to that. I see my first endo in a few weeks but should have bloodwork back tomorrow. I just hope the PTH is high. That sounds weird I know but I need to know what this is!!! Let's keep in touch! PM me if you'd like.
In a word, yes! For the past couple of years, I have had high normal and occasionally higher-than-normal calcium levels too. I was also having a weird trembling sensation. Not visible tremors, but the feeling of trembling on the INside. I also noticed that my legs were often weak, and I was only able to exercise for a few minutes at a time, when I had been exercising for an hour at a time. At the same time, my blood pressure starting yo-yoing, and I was told I needed medication. I resisted that because it would be high one day and perfectly normal the next. And, since my hypothyroidism was under control, none of this made much sense at the time.
Finally, after doing some of my own research, on one of my visits with my endo, I asked him if we could check my parathyroid hormones. Sure enough, my PTH was high (93 - when the normal range ends at 80). He thought that might be due to my low Vitamin D, so I started taking 2000IU of Vitamin D3 per day. A few months later, my Vitamin D was sufficient, but my PTH was still high. I was also now starting to have weird aches and pains from my back to my hips to my ankles and headaches like I'd never experienced. And sleep? What's that? If I can get 5 hours, I'm lucky. And, then, I wake up with that weird inside trembling/weak sensation. Plus, I am now starting to notice my hands sometimes shake. But, still, no one seemed to want to commit to a diagnosis of hyperparathyroidism.
Long story mercifully a little bit shorter ~ The last PTH test pretty much sealed it, because it was 127. Finally, my endo sent me for a scan. Now, those things are notorious for NOT showing a bad parathyroid when there IS one, but it had to be done. I got the scan last week, and the report I received yesterday only says ~ "There is discordant activity on the left which may be a parathyroid adenoma."
So, I have now been referred to a surgeon, and we'll see what she says. In my mind, there is NO doubt I have at least one misbehaving parathyroid, but I don't know how the surgeon will judge that scan report. She specializes in thyroid and parathyroid surgery, so *fingers crossed.*
From what I have heard from other people who have had parathyroid adenomas removed, their quality of life improved dramatically almost instantly, so I have high hopes.
I have done a lot of research on this, and some of the best information out there is at parathyroid.com. In fact, my endo recommended that site AFTER I had already found it on my own. She even recommended the doctors at that clinic but, since it's in Florida, that won't be happening.
So, your PTH number should tell the tale. It's possible they may want to put you on Vitamin D3, if your Vitamin D is low, and re-check you in a couple of months, but you already know all about that from parathyroid.com. And I don't think any parathyroid surgeons, except the ones at the clinic in Florida, will even talk to you before you have a scan. It's kind of a pain in the keister but absolutely painless. Let me know what happens!
Finally, after doing some of my own research, on one of my visits with my endo, I asked him if we could check my parathyroid hormones. Sure enough, my PTH was high (93 - when the normal range ends at 80). He thought that might be due to my low Vitamin D, so I started taking 2000IU of Vitamin D3 per day. A few months later, my Vitamin D was sufficient, but my PTH was still high. I was also now starting to have weird aches and pains from my back to my hips to my ankles and headaches like I'd never experienced. And sleep? What's that? If I can get 5 hours, I'm lucky. And, then, I wake up with that weird inside trembling/weak sensation. Plus, I am now starting to notice my hands sometimes shake. But, still, no one seemed to want to commit to a diagnosis of hyperparathyroidism.
Long story mercifully a little bit shorter ~ The last PTH test pretty much sealed it, because it was 127. Finally, my endo sent me for a scan. Now, those things are notorious for NOT showing a bad parathyroid when there IS one, but it had to be done. I got the scan last week, and the report I received yesterday only says ~ "There is discordant activity on the left which may be a parathyroid adenoma."
So, I have now been referred to a surgeon, and we'll see what she says. In my mind, there is NO doubt I have at least one misbehaving parathyroid, but I don't know how the surgeon will judge that scan report. She specializes in thyroid and parathyroid surgery, so *fingers crossed.*
From what I have heard from other people who have had parathyroid adenomas removed, their quality of life improved dramatically almost instantly, so I have high hopes.
I have done a lot of research on this, and some of the best information out there is at parathyroid.com. In fact, my endo recommended that site AFTER I had already found it on my own. She even recommended the doctors at that clinic but, since it's in Florida, that won't be happening.
So, your PTH number should tell the tale. It's possible they may want to put you on Vitamin D3, if your Vitamin D is low, and re-check you in a couple of months, but you already know all about that from parathyroid.com. And I don't think any parathyroid surgeons, except the ones at the clinic in Florida, will even talk to you before you have a scan. It's kind of a pain in the keister but absolutely painless. Let me know what happens!
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