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EndocrineWeb Community Advice

Hyperparathyriodism diognosis

From: kayjay57 - 6 years 37 weeks ago

I was recently diagnosed with hyperparathyroidism. 3 days ago, I didn't even know this condition existed. I am currently waiting for an appointment with a local Endocrinologist. I hope I don't have to wait very long to be seen and referred for surgery if that is what I need. I live in Northern California and have no clue if there are any surgeons in my area who do the MIRP using Dr Norman's method. Does anyone have any info on doctors in my area?

Thanks,
kayjay57

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48 Responses

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Hello
Like yourself I have been recently diagnosed with hyperparathyroidism, or at least that is what my three blood and urine tests have indicated. My P.A. has turned my case over to the M.D. after a couple of months and I am still awaiting a "formal" diagnosis from the Endocrinologist who seems in no hurry. My visit to the Endo three weeks ago did not go well. He was immediately annoyed with the fact that my Dr. had not put me on hormone replacement therapy and told me that I was probably vitamin D deficient. My instincts do not trust the Endo.
My husband, daughter and myself have been doing the research on this disease with-out the help of my Dr.'s office. The Dr.'s office told me from the beginning that they didn't know much about it and also warned me to be careful when looking on-line. However, my family all feel very confident about the information that Dr. Norman has provided. My husband has taken much time to become familiar with Dr. Normans site, and we all have the same conclusion. That is where the frustration comes in. We have to wait for the Endo. and then the Dr. to refer me to someone to do the surgery. It doesn't seem to be a priority of my Dr. that I have a specialist to do this surgery. We are trying to locate a surgeon in the state of Michigan that does the MIRP procedure on a regular basis (if one exists). From what we have learned thus far, it is the expertise of the surgeon that will make all the difference. We have determined that it is ultimately up to us to do the research, and make the best choice, even if that means not agreeing with the M.D.
I hope you find the right Dr. for you, sorry I cannot help, but to offer you the confidence to continue searching Dr. Norman's site. Even though we are still in limbo, we find his web-site filled with all the knowledge needed to understand hyperparathyroidism.

Sincerely,
deedee

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I am going for surgery tomorrow....I don't know if I made the right decision or not.....but it is already set. I told my surgeon about Dr. Normans method and he said it is better to actually "look" and see how things look instead of letting a probe do the job just in case there is any other problems....I just want it over with, I guess., However, i wish I had talked to more surgeons before this, but I did not.....Oh well, tonight they called me to set the time for tomorrow and asked if I was wearing nail polish (they don't want anything unnatural in the surgery room) also asked if I have a pacemaker, but did not ask if I was wearing a partial in my mouth which I am, some of it is metal......So I guess I will see what happens tomorrow. The doctor said the scar should be around 2"

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Keech
You seem to be aware of Dr. Norman, but this all sounds so sudden. I am just curious, how did you schedule your surgery with so many unanswered questions. You seem very anxious, so I am concerned about you. With everything set to go tomorrow, I wish you well and hope everything works out in your favor. Please let me know how you are doing.
Praying for you!
deedee

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Hi deedee, Thank you......Well, it just seemed to happen so fast, My one doctor referred me to the endro, the endro intro. me to the surgeon, and he seems like he knows his stuff, but I'm just still wondering if maybe this is just "me" that is anxious, part of the parathyroid problem.....Reading on the internet, you see so many different things that contradict other things, and it starts you thinking that maybe you made the wrong choice.....I don't know, the last time I had surgery was about 30 years ago and other than being hypothyroid and now hyperparathyroid, i have not had any problems at all.....I think i just don't want to go, lol.....Thanks for your reply....I will let you know how it goes.

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Keech
Here I am again. Had signed off, went to bed, and couldn't sleep. Sound familiar? Stomach ache, neck and throat pain.....you probably know the story. Also, my husband had come home from work and I told him about your post. He asked me if you were familiar with Dr. Norman's website, so I told him you had mentioned the Dr.'s name, but I wasn't sure how much or how long you have been investigating his work. My husband also hoped you would keep in touch as we would like to know the success of your surgery.
You said you had surgery 30 years ago, for hypothyroid? Does that mean removal of the thyroid? And I'm sure I will also be anxious when it's my turn for parathyroid surgery. I am quite new to this site and had not seen you post before, it seems that people have posted many weeks ago with no responses. I was happy to see yours here!
Take care, I will be thinking of you tomorrow!
deedee

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Hi deedee, Yes, sounds familar.....I am just checking my mail before I go in today.....No, have not had surgery other than gallbladder, but I was diaganosed as being hypo , sorry, not 30 about 15 years ago and about 30 for the gallbladder surgery......I just found this site myself, this was my first posting so thank you for writing back, it does make me feel better......I was coughing all last night, post nasal drip, i think....not sure, but i'll tell the doctor maybe he will not want to operate if he hears that......yea, fat chance, huh? lol......Well, off to see what is going to happen.....Thanks for keeping me in your thoughts.....i'll let you know how it went.
Keech (Carol)

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Hi deedee, and thanks for responding to my post! I forgot to get back on here to look for replys. When I was looking for a doc in my area...which I didn't find btw...I did notice a couple in Milwaukee, WI. They jumped out at me because I have a son living there. I was all over the place on so many sites that I don't know at this point where I even found that info...but I seem to remember they were both at a research hospital. That might be a little closer for you.

I too am waiting for an appointment with the Endo...who can't get me in for another month! I have been doing a lot of reading online too...and now realize that I've been dealing with these symptoms for a number of years. The symptoms seem to be so random that I certainly would have never connected the dots...and apparently my MD didn't either. I ended up being referred to a urologist last summer...who did the 24 hour urine test. That ended up with abnormal results...so she sent me for further lab work...saying it was highly unlikely that it would be Hyperparathyroidism...but we needed to rule it out. Surprise surprise...the unlikely is true after all.

I actually called a surgeon in town who I have known about for years because he has operated on a couple of friends with Thyroid issues. I think he is the only doc between here and San Francisco who does Parathyroidectomy surgery. After talking to his office...they were able to get me in to see his PA next week. So, I called the urlogist office back and requested a referral to the surgeon as well. I'm just thinking this will speed up the progress a little.

I've been dealing with so many issues for so long...and now that we know what it is...I want to get it over with. From what I can find on pretty much every web site...if you have a bad parathyroid gland...it just needs to be removed. It seems like people start feeling better really quickly after the surgery too. I just found out yesterday that a co-worker's friend had this surgery about 2 months ago and she is feeling wonderful now. She is about my age or maybe a few years older...so that gives me great hope! My son is getting married in May...to a girl from Edmonton Alberta, Canada. I want to be feeling my best by that time...so I don't want to just wait and wait for this whole process to drag along at it's own sweet pace. These days you have to be very pro-active about your own healthcare. It will be even worse if they ever manage to get the government healthcare in place!

Please keep my posted on your situation.
Kathy

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Hi Carol,
I too am anxious to hear how things go for you. You are in my thoughts and prayers! Please keep us posted.

Kathy

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Hi Kathy!
So glad to hear from you and sounds like you are making progress at last. Congrats on the up-coming wedding it is a great occasion to set your goal for.
It sounds like you and I are on the same page, in many ways. The symptoms have been here for a long time, some seem so vague at first . But as they continue and do not go away you know something needs to be done. We are so grateful for Dr. Norman's web-site, our best source for information. I only wish my MD would share that thought. It will be necessary for me to have a referral from my MD before I can have my parathyroid surgery done by someone who knows what they are doing. We are still waiting on the "official" diagnosis from the Endo, even though I have had three blood and urine tests that indicate high calcium. It's going on three weeks since my visit to the Endo,and no word yet. I asked the Dr. if the Endo says it's probably a bad parathyroid, who will he send me to so I can have the surgery? He said it would be the local general surgeon. Needless to say, I went away from that meeting rather stunned. From everything we've learned, the success of the surgery depends on the expertise of the surgeon. Shouldn't he refer me to a parathyroid surgeon? I have yet to discover how many parathyroid surgeries our local has performed. There is also the possibility that the Endo will only want to treat me for Vit. D deficiency, since that was his main focus during our visit. That all seems opposite of the information we have learned on-line.
I agree totally with you about being pro-active with your own health care. Our dilemma now is that without the referal of the MD, we have to go the the surgeon of his choosing. Just because the surgeon is in his network, HMO, does not necessarily make him the right choice for this particular surgery. We don't seem to have a voice here. Meanwhile, my symptoms continue to increase and worsen, but I have not given up hope yet.
It is very encouraging to hear from people such as yourself. I also had noticed the specialist in WI, along with a couple of others that we have yet to check into. I hope all goes well for you and will be looking forward to hearing from you again.
Take Care,
deedee (Denise)

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Hi Denise,

Since this is such a new issue for me I have tons of questions.
What are your symptoms? (other than high calcuim & low vit D)
How did you find out this is what you have?
How long have you been dealing wiht symptoms?
How long has it been since you first found out?
Etc...

I've been having kidney stones & bladder infections for about 10 years now. This is the main reason I was sent to the urlogist...but I've also been unable to empty my bladder completely. Apparently I'm leaving 150-200cc in my bladder that I just can't seem to empty.

I've also had lots of trouble with nausea & vomiting...which I ended up being in the hospital a couple of times for last spring. They ran all kinds of test at that time but nothing really jumped out as to the cause of it all. There was no mentioin of parathyroid issues at the time.

I have also been having many of the other issues such as; headaches, joint pain, forgeting things, Pancreatitis type issues, hot flashes...etc. I've also broken a couple of toes way too easily...the most recent one happened when I was just stretching my toes out while putting lotion on my feet! In the last few months I've also been having way too much hair falling out!

I almost always feel more tired than I think I should be...and my husband has been complaining about me not being interested in much of anything...like my usual hobbies or whatever. He said I have been acting depressed...although I can't say that I've really felt like depression has been much of an issue recently.

All these things just seemed like they were very random...so it's been very surprising to find out that they could all be related to the hyerparathyroidism. Like you...I will be glad to get this taken care of so I can get on with my life...and feel better. It is encouraging to hear that most people report that they feel much better in a very short period of time. But...it is very discouraging that the whole process seems to take a long time...due to the fact that so many doctors have to be involved...and the normal length of time it takes to get in with a specilist in the first place.

It's good to know I'm not the only one out there with all these weird set of symptoms!

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Kathy
WOW! You have been dealing with this for SO long! I do feel so bad for you and others that I have read about in this community. So many symptoms and not enough answers. It seems that the Dr.'s are all about treating symptoms, instead of looking and finding the source of the problem. It is truly good to know that there are other people with these similar symptoms, as it confirms that it is not just imagined in ones mind.
I consider myself to be fairly healthy, and rarely visit a Dr. mostly because we have never had health insurance or when we did, the premiums and deductible were so high we paid out of pocket for visits. Six years ago my husband found a job that had health insurance but we still pay about half. This is the first time I had a female PA , and I felt comfortable . A few years ago my hair started falling out, it is long, so it was very noticeable, even to my husband. I have a gland under my jaw that was enlarged & I began to feel as if it were tugging all the time. Also at that time I had twisted my leg on the ice so I made the apt. to talk to the PA about all that. She said our bodies are always changing and these things take time to heal. About a year and a half ago I had random pain in my pelvis after heavy lifting, but it did not last long. This past summer I just couldn't get in my usual groove with my favorite hobby of gardening & yardwork, everything seemed so heavy and I tired way too fast. My feet hurt just going for short walks. Mid August the headache began and the bone pain seemed to increase at the same time, along with night sweats and memory loss. Menopause, I thought, but not the bone pain, which is what brought me to the PA. in Nov. She diagnosed me with tendonitis & beginning of menopause, & said to take Tylenol. Luckily she did order a blood lab, since I had never had one. That is when we started to research hyperparathyroidism. After the second blood test she sent me to the Endocrinologist.
Every day I feel like I have the flu, nausea, head and neck pain, severe pelvis & back pain, cramps in my calves, fatigue, ear pressure and sore throat. No stones or broken bones...yet, but I think you have certainly been dealing with this for much longer. Too long!!!
Thanks for sharing your story with me, looking forward to hearing of your progress.
Denise

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Hi DeeDee and everyone, well, I had the surgery and just returned home yesterday. I had the "old fashined" surgery as my surgeon called it. However, he did need to look at the glands as there was no tumor on the glands they were just enlarged. He removed 2 of them, my parathyroid level immed. dropped from about 127 I think he said to 15....and my calcium is now low, so I have to take 4 or 8,000 mg calcium (sorry, still foggy, have to read everything from the doctor today) for about 6 weeks or so....He also did a biosopy of my thyroid gland since I am hypo and he found out i have Hashimoto's. I don't want to scare any one off of surgery, but it was pretty painful, I had it done Thrusday and stayed overnight and am just feeling a bit better today....But they did put me on pain meds every 2 hours. The scar is not too bad, it is about 2 inches and he put it in the lower part of the neck, I just had the nerve to look at it today, and i can see how it will not look bad after awile. My suggestion, if you can get the mini surgery, go for it! But i don't know if that would have just found a enlarged gland that had no tumor on it....maybe it would have, but i am just glad it is over. Thanks for all your good wishes everyone.

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Welcome back Carol!
So glad to hear your are on your way to recovery! Are you glad that you went ahead with it now? I had to go look up what Hashimoto's means, something more for you to learn about. You said that there was no tumor on the glands, just enlarged, but he removed them anyway. Was that done as a safeguard in case they were mal-functioning? It seems that even though the parathyroid and thyroid are not related, they are often both envolved.
I wanted to ask you also, what type of Dr. was your surgeon? I hope you keep us posted on your progress and the now new diagnosis of Hashimoto's.
Once again, so happy to hear from you!
deedee

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Hi DeeDee, he said he tested them first and as soon as he did my level dropped. so that is why he removed them. He is a general surgeon but has done quite a few of them before. Actually when I read about Hashimoto's, it said it is very under diagnosed, that a large majority of people that are hypothyroid also have Hashimoto's, I read that when I got home, and he told me that when I was in recovery. Well, I guess I am happy to have it behind me. It is better than worrying all the time about what it could or could not be. Thanks for your support. I will keep your updated and you do the same.
Carol

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Hi Carol
How are you doing ? It's been over a week now since your surgery, wondering if you are feeling any better? Is the Hashimoto's controlled with medicine now, since they left your thyroid intact? Hope all is well.
deedee

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Deedee & Carol,

Yes...Carol...I've been wondering how you're doing post-op too.

I got a call Thursday from the Endocrinologist office that they had a cancellation for Friday...so I was able to get in early. YAY! The whirlwind starts now...

He said...no question about it...I definitely have Hyperthyroidisn and need the surgery. He believes I have had this going on for several years...which is exactly what I thought after doing some research and seeing all the symptoms. He is floored that given all the issues I have been treated for...that not one doctor has picked up on what's been going on before now. He just shook his head and said..."UN-BE-LIEVABLE!!!" The interesting part of that is the fact that it wasn't even my GP that sent me to the urologist to dig a little deeper into what has been causing all my problems for so long...it was his PA!

He also thinks I might be having issues with my Thyroid...and...that I might be Diabetic as well. I was blown away by this news. I do have both in my family...but sure didn't think I had either issue.

I will be having a number of tests in the next two weeks...and see the Endocrin doc again on 2/4. He thinks we can get surgery scheduled within a couple of weeks or so after that. He is testing me for everything under the sun...so we'll have more answers by the time I see him again.

I'll keep you posted,
Kathy

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Kathy
Wow!!! That is unbelievable, but it seems to be the norm as I am learning for myself. It makes you wonder what your other Dr. was looking at, or not looking at, all this time. The possibility of being diabetic though, isn't that something that should have been fairly easily diagnosed before? Your head must be spinning, that is a lot to grasp all at once. Thank goodness for your friend that got you in to their office early, and also to see the Endo again on 2/4. Did you have a clue about your Thyroid? Who will do your surgery? Also, did you even discuss what type you will have?
I have been trying to be patient, but growing a bit frustrated. This past Mon. I finally got through to the Endo. office, as I had not yet received the results from my visit to him over a month ago! The nurse seemed to pull it from the file as we were speaking, and said I have "primary hyperparathyroidism requiring surgical intervention, and vit. D deficient." Big surprise huh? Since we already figured that out from the other tests, I didn't understand why it took so long. But the madening part is that when I called my Dr. office, he does not want to refer me to a surgeon until he gets a "formal" report. The one that the Endo sent is a one page hand scribbled note.
When you had asked about my symptoms, I didn't mention something else, I was just too tired. So... the day after Christmas at 5:00a.m. I woke up barely able to breathe. I tried to distract myself by writing letters. When my family woke they knew something was wrong and demanded I call the Dr. , being a Sat. the office was closed, but there is a nurse on-call. She sent me to the Hospital, they did an EKG even though I told them I was not having a heart attack, the pain was higher in my chest towards and including my neck & back of my head. They gave me a strong drug that was almost numbing, but I was still aware of the ear pressure, sore throat and throbbing ache at the base of my scull. The Cardiac PA said I had too many symptoms for them to diagnose there and sent us home with a perscription, although I was somewhat oblivious, at that point I had no cares. I do remember telling the Dr. "you don't know me, but I am not an anxious person" We had just had a wonderful Christmas, and my life is not having any crisis. I consider my new health issues something to deal with. The next day, Sunday, we took leftovers to our son & daughter in-laws new house late in the day. Mon. morning, same thing wake up around 5:00a.m. difficult to breathe. Called my Dr. office to ask to see him & the nurse called me back to say he looked at my chart, saw that I had gone to the Hosp. and recommended me taking the perscription for anxiety, he would see me in one week. I explained to the nurse there was no way I would take a perscrip. with more side effects than the numerous symptoms I already have! I knew it was not anxiety but what? It was then I realized it must have been something I ingested to cause such severe symptoms. Shrimp was the suspect and that night I took Tylenol PM, which has an antihistamine. The next day it was a little better. When I saw the Dr. the next week most of the swelling had gone away. Around my upper chest, under my armpits, neck, throat, sinuses, behind my eyes, under my jaw were many lumps, I guessed were glands. The most noticeable the large band that was around the front of my throat, just above my collar bones. The muscles in my neck were incredibly strained and my voice sounded like a man. The Dr. didn't say much. Even now it is not the same, I feel as if I have a lump in my throat, I suspect Thyroid is involved, what else could cause such a reaction?
It seems that it is necessary to make our own conclusions, perhaps you feel that way? I know there are good Dr.'s out there....somewhere. It sounds as if you have found yours, and I am happy for you! I wish we could e-mail directly, but I don't know how, do you?
Thanks for the up-date,
deedee

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Hi Deedee,
Yeah, I wish we could email directly as well...but I don't know how to do that without posting my email address on here...which I really don't want to do.

I had to change my 2/4 appointment because I noticed on the form for the bone density scan that you cannon have that one done within 7 days of several other things...one of which is "any study in which you are required to swallow anything". Since I did have a nuclear medicine scan on the 28th in which I did have to swallow a pill...the 4th is too early. The next available appointment they had was on the 11th.

I had 4 appointment times scheduled on the 28th...but when they finished the long scan (3rd appt) at nuclear medicine...they told me I didn't have to come back for the last scan since that one had such a positive result. I still don't know anything about the Thyroid or Diabetes issues. I'm hoping they are both "non issues"!

All my symptoms are building at this point...much like they did last spring when I ended up in the hospital a couple of times because I couldn't even keep down clear liquids. I'm really hoping to get this resolved before it get to that point again. I can't wait to start feeling better!

Carol...how are you doing at this point? Are you better? Or...are you dealing with the "balancing out" of all your PTH & Calcium levels? I am really interested to know how you're feeling about having the surgery...and how your recovery is going.

I'm feeling so "not well" right now. Nauseous much of the time, head feels like it's going to explode...and so tired I can't really function at all. This is just not so much fun to deal with.

Hope we can all get this behind us soon.
Kathy

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Hi Kathy!
Sorry to hear of your increasing symptoms. Last spring when this happened to you, how did you wind up being able to leave the hospital? Did they treat the symptoms and you found some relief, or did it just subside on it's own? At that point did the Dr.'s give you any type of diagnosis, or just not really know what it was? Hopefully it will not reach that point again, perhaps you are just worn down from everything that has been thrust at you the past couple of weeks. No doubt that after having all these symptoms going on for so long your resistance is lower.

It seems that much has been going on for you, I was surprised to hear that you have actually had scans done already. I went back to our former letters and think I may have been mistaken about something. When you said the Dr. office had a cancellation, did you mean your regular M.D. or did you mean the Dr. friend of yours? Either way, it's great that you were able to get in ahead of schedule. I called my Dr. office again one week ago to inquire, since they have had my diagnosis for quite some time, when could they make the referral to a surgeon. The nurse called back to say that "the dictation did not indicate what the plan would be." When I reminded her that the pain in my bones is increasing and I have had a headache since last August, along with a list of other symptoms, she said she agreed it should not take this long. Although she is very nice, that does not help throughout the night when the sound and pressure in my ears keeps me awake. Or maybe it's the pain and lump in my throat that keeps me awake , or ....you know the story. When I asked the nurse how many patients she had seen with this disease, she said I was the first. I can understand if the Dr. does not have much experience with this, but it seems if only out of kindness, couldn't he refer me to an expert who does know what to do??? Not sure how much longer I can wait.

Please be sure to keep in touch. I often look at this site to see if there are others who communicate on here. Many have done so weeks ago, but not a lot of dialogue ongoing. I am also wondering how Carol is recovering from her surgery. I am sending you both an imaginary get well card! :)
DeeDee

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Hi DeeDee,
The cancellation/opening was with the Endocrinologist office. I had been bugging them every few days asking if they had one...I think they got tired of hearing from me and got me in to shut me up...lol The "friend" of mine...was the tech who did the Nuclear Medicine scan I had last week.

When I was in the hospital last spring with so many symptoms...they just ran a bunch of test...and told me they couldn't really find anything to cause any of it. They strongly suggested that it might be either stress or just in my mind and I was working myself up to be that sick on my own! They didn't really tell me anything other than to follow up with my GP. By the time I left the hospital I was able to keep a little bland food down and they figured that was good enough. I lost a lot of weight (25+) in the following few weeks. It was a long time before it settled down enough that I could eat much of anything else. My system has never really been the same since. I usually feel like full blown nausea is right around the corner. Sometimes I can eat most of what I want...and other times I get by on ricecakes and hot tea. When I finally went to the hospital last spring...I was so bad that clear liquids wouldln't even stay down. It seems like my symptoms come & go to an extent...it's just not the same all the time and I never know which way it's going to be...it can flip on me really quick sometimes without much warning at all. When you talk about the pain and noise in your ears at night...wow...have I ever had that going on...sometimes really bad! Looking back...I think that might have been one of my first symptoms...and I had no clue. I remember talking to the doctor about it and he just blew me off. Whatever!!!

I hope you can get some action out of your MD office soon. If I were you...I'd be calling them every single day till they get so tired of hearing from me they do something about it! I'll certainly be keeping you in my prayers :)

I would love to hear how Carol is doing too...I have tons of questions for her!

Take care,
Kathy

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Hello Kathy!
It is SO frustrating to be told you are ill because of stress or anxiety. I can understand to a degree if they cannot diagnose a person immediately, so many symptoms could be a number of things. How about "We will continue searching until we find the cause", not just telling you that you are doing this to yourself. Suggesting a Psych Episode and a prescription so you can go home and try to forget about it does not address the problem. There are some of us that do not go to the Dr. / Hospital if there is not a legitimate reason. And yes, we can discern whether it is stress or true physical symptoms or pain. Broken toes do not just happen, it is too bad it had to get to that point!

Early on I mentioned the noise in my ears my PA said that some people just have that. My daughter has a theory, perhaps the small bones in the inner ear may also affected by the lack of calcium. I've read that the large bones are generally affected first, but who really knows how or which are affected the least or most. It is my hope that this too will correct itself, since it has become quite loud.

Thursday my Dr. called me to say that I have a "parathyroid adenoma". Hmmmm,,,I think I heard that word a few months ago. They set me up with and appointment to see the surgeon they chose, almost three weeks from now! I asked if he was a specialist in parathyroid, not just thyroid surgery, and he said "yes" I told him that we have been doing a lot of research on line, and there is a team of parathyroid specialists in Ann Arbor MI. He said they stay with their own Dr.'s. The next day, after having another bad night and my family encouraging me, I called the surgeons office directly to ask to be put on a cancellation list. While on the phone with me, the nurse said he would get me in for an appointment on Tues. Feb. 9th. Wow!!! Needless to say, it was a great relief, at last it seems like some progress!

By this time do you have any more info. from the scans that you had done? I'm also wondering about Carol. It all seemed to happen so quickly for her, but we did not have so much contact. That is why I want to keep in touch with you, it is good to know of others who are undergoing the same.

Keep smiling :)
DeeDee

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DeeDee...

It's awesome that you're finally getting in to see the surgeon! Please keep me posted on your situation. You're in my prayers.

I have my bone density scan & then see the Endocrinologist again this Thur and I'm sure I'll get more answers then. I did get my copy of the Nuclear Medicine report on the scan they did...it just says I have a "parathyroid adenoma" in or near the thyroid gland. I really hope to have the surgery scheduled within the next couple of weeks or so. I'll keep you posted.

As for the ear noise...they had been telling me for years it is caused by the high blood pressure...and some people have that symptom and others do not. It will be interesting to see how many of the issues I've been dealing with for several years go away after this surgery.

I wonder how things are going with Carol...I think of her often.

Hang in there,
Kathy

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Hi Kathy!
Thanks so much for keeping me in your prayers, that is indeed the greatest help I'm sure. Know that I am doing the same for you. It does take faith and family for the needed comfort when one feels so ill.
I sympathize for the others who reach out for answers and seems there are none forthcoming.

I finally do have some good news! We met with the surgeon yesterday and were pleasantly surprised. We took our list of questions and he was willing to spend all the time we needed to be very comfortable with his expertise on hyperparathyroidism. It was a great relief to be able to have someone who was actually listening to what I had to say with genuine concern. He also did an ultra-sound right there, instead of sending me elsewhere to have one done. He said it would only be a piece of the total picture, combining it with the Sestemibi scan the day of the surgery. It appears that I have cysts on my thyroid. After the throat swelling I had the day after Christmas, I wondered if my thyroid was involved, as it has never been the same. I asked him if I should have a bone density test done and he said we will fix this first, then work on that.

So you will see the Endo. again and I will be curious to know how that visit goes. I guess they all have their own protocol. I am just glad at this point to have a sense of trust for the man that is going to operate on my neck :)

Hope all is well with you,
DeeDee

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Hi DeeDee,
So glad you got in to see the surgeon! Also glad you are feeling comfortable with him. Do you know when your surgery will be yet?

I had my bone scan & saw the Endo again this morning to get all the test results. He said I have all the classic symptoms...textbook even! He still can't believe I was never tested before now. Me either!!! I do have osteo...in my spine & in my long bones :( He says it will have to be treated. I really don't want to go on Boniva or Fosomax because I have a history of adverse reactions to a number of meds already and don't want to go down that road again. I would be much more comfortable just going the diet & nutritional supplements route with it. We'll see what he has to say about that later.

I called the surgeon's office as soon as I left the Endo. I told them I am being referred for parathyroid surgery asked to be put on their cancellation list in order to be seen sooner. She just went ahead and put me on the schedule for next Wed morning! They didn't even have the paperwork from the Endo's office yet! I'm still in shock over that one. They have all their new patient forms available on their website...so I was able to just print everything I will need to fill out and take in.

The Endo did mention that there was an issue with my thyroid as well...could be that the parathyroid is in it rather than on the back side. I guess I'll find out more about all that when I see the surgeon.

I'll keep you posted. Please let me know how you're doing as things progress.
Kathy

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Hi Kathy!
Great that you are getting somewhere finally! What a pleasant surprise when you called the surgeons office. So you are actually seeing him or her this coming Wednesday, do you have your list of questions to ask? Maybe you will have your surgery before me at this pace. How much does your bone pain interfere with everyday living?

We are counting down the days until Tues. March 2nd. The surgeon is at a conference this week. I am trying to be patient, but my bone pain is becoming immune to the Tylenol I think. Very difficult to just walk, let alone do anything. I too would prefer nutritional supplements, however, depending what is found & done to the thyroid may make the difference. That is something both you and I don't really know yet ,huh? The thought of having to take meds for life if my thyroid has to be removed is something I'm sure I would struggle with. I would have liked the bone scan done while waiting for the surgery, but that can be dealt with later I guess.

Keep me posted!!!
DeeDee

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Hi DeeDee,
Well, I saw the surgeon today and I'm scheduled for Thursday March 4th. I really like the surgeon and he would have done my surgery next week, but he only does them on Thursdays and already had 3 parathyroid surgeries scheduled that day. It's a good thing I've been getting copies of all my test results, scans, reports, etc. I got in there and nothing had been sent to the surgeon other than the referral letter! At any rate, they took copies of what I had and he looked at the scan photos and agreed that he really couldn't tell if the adnenoma tumor is on the outside of the thyroid or in the middle of it. He said if it is in the middle...they will have to remove part or all of the thyroid gland as well. He also said that most of the time the bad parathyroid gland is on the lower right...so it's a little unusual that mine is on the left side.

I asked about why I'm required to stay in the hospital for 24 hours after this surgery. I guess some people have trouble with the rapid swing of the blood levels after the bad gland is removed...so they want to monitor the levels and be able to deal with any resulting issues right away. I hope I don't have any of the issues he mentioned...twitching, cramping, spasms, migraine, BP swings...etc. It makes sense that there could be unpleasant issues from the blood levels going from one extreme to the other...but I just hadn't thought about it. I just wanted everything to go back into normal range right away...and didn't think about the alternative. Not looking forward to that part of it...but if that's what it takes to get this over with...it's still worth it.

We'll have to stay in touch and see how things go. I know what you mean about counting down the days...I'm right there with ya on that note! Can't wait till all this is behind me. I also had a CT scan yesterday to check for kidney stones since I've been having kidney pain again. I hope it's a non-issue, but I'd rather find out for sure than worry about it and not know.

Take care...
Kathy

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Hi Kathy!
Sweet!!! We will have our surgeries the same week! Wasn't it a relief to finally get to the surgeon and feel comfortable with him? That definitely makes all the difference. I am grateful for all the information that we learned about on this web-site. Even though the hospital stay is for overnight, that is something that is certainly acceptable. When I found out that I would also be staying overnight, it actually put me more at ease. Not that I expected to stay over initially, but for them to be monitoring things afterwards, seems like a good idea. My brother and all three sisters have a blood clotting disorder, so that is my main concern, since I have not had one yet. Two sisters had massive blood clots in their legs without ever having surgeries, in their early 20's. The others have had clots after minor surgeries, one resulting in a collapsed lung. So um....yeah, it does make me somewhat cautious.

Good thing that you took all your paperwork. Sounds like you have been getting all the scans done that you need. Do you have to have an EKG or are your other tests/scans sufficient? I am still waiting for word on that, and I think they need another blood draw, closer to the surgery date. The M.D.'s office sent me a letter yesterday simply to say that they noticed that my B/P level was elevated at my last visit, and to come in to discuss this. Hmmm...guess they have not connected the dots yet. Since it had not been an issue before the hyperparathyroid , it would be in my best interest to see what all goes back to normal after the surgery. But of course that is just my common sense speaking.

The thyroid is something that we did not discuss much, so I am trying to learn more about issues with that. It appears that I have cysts on the right side which is where the hyperparathyroid is located. I was hoping that it is just thyroiditis from the Dec. 26 throat swelling incident, so I guess we need to wait for the surgery date. My surgeon specializes in Thyroid, Parathyroid and Kidney, so I am confident that he will be the best judge on what to do that day. If it means having to remove part or all, I will have to accept that. No one wants to take meds for life, but I have been very blessed. There are so many people who have it much worse than myself, so I try to keep things in that perspective.

It's getting close now, just a little over a week away. I will be sure to keep you posted, you do the same.
Talk to you again soon!
DeeDee

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Hi DeeDee,
Just wanted to let you know that I'm thinking of you & that you will be in my prayers as you go into surgery tomorrow.
We'll have to touch bases again and compare notes on the other side of this for both of us.
Kathy

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Hi DeeDee,

How did your surgery go? Been thinking of you and praying for you too!
I had my surgery yesterday morning and it went well. Doc says the tumor had enlarged the gland to 100+ times the normal size. The good news was that it was located on the back of the thyroid right where it was supposed to be...so it was easy to get out. Also...my PTH level was 191 before surgery and dropped to 45 after the tumor was out and they waited the 10 minutes. My surgery was at 7:30 am yesterday and was home a little after 10:00 am this morning. I'm sure I'll sleep better in my own bed tonight...lol I have to go back down to the lab at the hospital in the morning for a blood draw to check the iodized calcium levels...and they'll call the results in to the doc...and he'll call me.

Hope all is well with you.
Kathy

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Hello Kathy!!!
Well, looks like we are both on the other side of this now!!! Great to hear that your surgery went so well. Such a relief isn't it ? And I'm happy that we were able to both have our procedures so close, so that one of us didn't have to linger on any longer.

My surgery didn't exactly go as planned. It turned out that mine was not actually located on the right side as initially thought. The Dr. found after the Sestamibi scan that it was located on the left side, perhaps inside the thyroid. During surgery it proved to actually be cancer on my thyroid, so he needed to discuss with my husband (since I was busy snoozing :) The best thing to do was to remove it, so he took out half my thyroid. After that, he located the bad parathyroid, removed it along with some other lymph nodes. Soooo..... there was a LOT going on inside my neck.! For thoes "extras" I think has resulted in more pain & swelling of my throat and neck than I had anticipated. Still, so grateful to be at this point !

I don't even know what the actual numbers of my PTH level are, only that the Dr. did say that my calcium levels were in the normal range the day after. Next Friday I will have an appointment in the surgeons office, and find out what new steps I may have to take. So I assume your thyroid is OK? And how about your other symptoms? I'm curious to know if your kidney stone problem is now just a thing of the past, that would be such a blessing.

You too have been in my prayers, I even speak to my family about you. Though this has been at times very frustrating, it has been nice to have you to converse with. Wishing continued good health to you!
DeeDee

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