Mayo Clinic Connect
Parathyroid question. Are there endocrine surgeons with expertise in parathyroid disease at the Mayo Clinic?
Hi jean843, My user name is @gailfaith and my name is Gail. I have also just been diagnosed (Dx) with Hyperparathyroidism. I was Dx with Myotonic Dystrophy type 2 at Mayo in 2013. My GP “set me up” with a local endocrinologist but my FIRST appt is not until July 29!. The trip to Mayo was very tiring and I was in better shape with the Dystophy then than I am now, and though I would love to go back to Mayo, I am not sure physically I could make the trip. And last time I had my service dog with me. (And that is his picture!) But alas, his days are over. I don’t really want to wait until the end of July so I am trying to get an appt else where that might be closer, but with all I’ve read, GOOD pt surgeons are as rare as the “proverbial “hen’s teeth”. I live near Philly. Anyone know of a good pt surgeon in this area? Not sure I will need surgery, but just in case I do.
What I understand is if you have pt disease the ONLY solution is surgery to remove the tumor from the pt gland.
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It depends on – if one has Primary Hyperparathyroidism is the one where the only cure is pt surgery. But there is also 2ndary hyperparathyroidism – depending on the cause of 2ndary , the cause would be treated. For only one example if one has 2ndary hyperparathyroidism due to vit d deficiency – the treatment would be to treat with vit d by prescription.
Liked by Colleen Young, Connect Director
I gather you do not know yet if you have “Primary” Hyperparathyroidism
If you would like to join an awesome/educated/knowledgeable group in Parathyroid disease where you will get awesome support as well as education in this disease + recommended PT surgeons “Parathyroid Disease Support & Awareness Closed Group”. A great group, not the typical FB group
In the meantime, I looked on the group to see if there were any highly experienced pt surgeons in Philadelphia. If I understand Philly correctly ? I am a Canadian , so not sure. Here are the highly recommended pt surgeons in Philadelphia
Dr Ned Carp ( Lankenau Medical Center ) , Dr Rachel Kelz and Dr Douglas Fraker both at University of Pennsylvania
Hi jmbjar, I think Colleen told me your name is Jan. Is that correct? Are you in the medical field? I am a toxicologist in pharmaceutical research…or was, now retired.
Sorry for the delay in getting back to you as there have been problems with the Connect site. Because I am not very computer literate, I have not only been asking her a lot of questions on “how do I?”, but in the process I am finding for them some of the bugs in their program.
I really appreciate your response and the names of some excellent close by, PT surgeons. And yes, Philly does stand for Philadelphia! This site is educating me so I am really liking it. I didn’t realize there are primary and (I guess) secondary types. At this point I have no idea as I mentioned I don’t have an appt with an endocrinologist until July 29! But the nurse/tech who called me and told me about the Dx, I think she also said no surgery. With everyone saying surgery is a definite, I had no idea about the other type. I have forgotten most of my college biology! I had asked her if the doctor they are sending me to did surgery and he doesn’t as I expected. So with all the warnings about finding a GOOD one, I have started to get an appt at Hopkins which in only a 2 hour drive away. Mayo is too complex (3 flights) for me now to try to get to.
When I know a little bit more about PT and had some questions, I will probably join the Closed Group that you mentioned. Thanks for the tip!
Again, thanks for all the info. Gail (@gailfaith)
Liked by Teresa, Volunteer Mentor
Hi Gail. Not sure why but there is no reply option in your last post to me. Yes my name is Jan and no I am not in the medical field. But I swear after having this disease for so long , with the information from the support group I know a heck of a lot more than the Dr’s I have seen ( where I live )
Most Dr’s/surgeons will tell you no surgery with Primary HPT if your labs are “mild” , they want to do a watch n see . But the damage that is done during this time can be devastating to many.
Yes, there is primary and secondary hyperparathyroidism as well as familial /hereditary and multiple endocrine neoplasia (MEN) which encompasses several distinct syndromes featuring tumors of endocrine glands, each with its own characteristic pattern. MEN patients have a least one tumor/adenoma ( adenoma means benign ) on another endocrine gland
Do you by any chance have copies of your lab work ? Serum Calcium, Parathyroid hormone , Vit d ?
If you do, they are usually very helpful to see what category of hpt you are in. That is one thing I have learned – to get copies of my labs as so many Dr’s , including endocrinologists are not well educated/updated in this disease.
Learned this from an Endocrinologist Surgeon ( on the Fb group I mentioned ) who used to train surgeons in Parathyroid diagnosis and pt surgery . He is retired, so only on the group to help guide those patients if they ask.
Many times the diagnosis is not so straight forward.
Hi jmbjar (Jan)….I hope you get this though it might come to you indirectly as Colleen gave me the “how to” when there is no “reply” available. Good to hear from you. Because I wasn’t feeling well yesterday I saw my geriatrician. After we discussed yesterday’s problems , we got on the subject of hpt and when I mentioned that Primary requires surgery, he said regardless I am too old/too risky. But I DO have an appt now at John Hopkins in Maryland, a 2 hour drive in August, plus the local endocrinologist on July 29th. We will see what they say and now also I have names of several tried and proven surgeons to check with also. He was callng it primary yesterday. And hopefully someone at Hopkins is also great in this field.! Gail
Again Gail , I can not reply to you recent post
That remark “too old/too risky” is very common unfortunately Gail.
This type of remark comes from unexperienced Dr’s/Surgeons in pt surgery.
It is definitely not risky for anyone, even 90 yr olds when one has a highly experienced pt surgeon.
On the Fb group I mentioned, many older people have had successful/cured parathyroidectomy .
But again, that would depend on what you want, your labs/symptoms/signs.
I now have heart problems , bone loss and most recently diagnosed with renal/kidney failure – all related to long term /untreated Primary hyperparathyroidism
Due to listening/believing the same thing you were just told. I did not know anything about this disease until I was no longer able to work due to symptoms, not knowing what was causing my symptoms. That was when I started researching ( all symptoms led to hyperparathyroidism & the Fb group I mentioned )
Not sure if this is allowed here, if not feel free to delete
Here is an video with one of the experienced surgeons on our group . These surgeons/Dr’s/Nurses on the group do not/are not on our group to get patients. They are only there for knowledge, giving us the information patients need
Published on May 25, 2016
Dr. Rebecca Sippel, Endocrine Surgery Section Chief of the University of Wisconsin Department of Surgery, leads an in-depth discussion of parathyroid disease diagnosis with an online support group. ( Our FB group )
Hi again, Jan,
Even with the little I know and have heard on this Mayo site, I was not about to argue (yet) with him knowing I already am getting other opinions. And I haven’t even contacted any of the references you have supplied. You surely have a lot of problems from hpt. Sorry to hear that. I am losing my hair and aside from the MD2 that I have, I can’t attribute anything else to the hpt. My MD2 is genetic and though it might be aggravated by the hpt, I have yet to hear anyone link the two. My Ca level has been high for MANY years, so even Mayo knew about that when I was there never mentioned that.
OK ….question for you in light of the fact yesterday he said I have primary. What is the difference between the two? I haven’t gotten that far in the “study” of this Dx. I’ll take that back. Colleen has mentioned vit d deficiency.
Hi Gail , still can not reply under your posts
Yes, I certainly get why you weren’t about to question the Dr you seen yesterday, no point
I explained 2ndary hpt somewhere else , but ya think I can find it now .
Primary means no other cause of hyperparathyroidism other than disease gland ( adenoma on one or more pt glands. ) Only ttreatment /cure is pt surgery . While 2ndary means hyperparathyroidism due to another cause and the cause must be treated
The disorder can generally be divided into two types based on the cause. Hyperparathyroidism may occur because of a problem with the parathyroid glands themselves (primary hyperparathyroidism) or because of another disease that affects the glands’ function (secondary hyperparathyroidism )
One only , being vit d deficiency .
Secondary hyperparathyroidism can also result from malabsorption (chronic pancreatitis, small bowel disease, malabsorption-dependent bariatric surgery) If left untreated, the disease will progress to tertiary hyperparathyroidism, where correction of the underlying cause will not stop excess PTH secretion, i.e. parathyroid gland hypertrophy becomes irreversible..
Hope this helps
Thanks jmbjar (Jan) for your last two replies along with your input. I have been told that the “reply” problems will hopefully be solved by next week. I love the picture associated with you. Are you into lilies in particular or horticulture in general. My mother’s name was Lily and her sister’s name was Rose. On one side of the walk leading to my front door are bright yellow lilies, that are just now beginning to bloom and on the other side are mini rose bushes in varying colors. Again, thanks for your imparted knowledge. Gail
Thanks Gail . Yes, I do love lilies. This one in particular was red which we had never seen before. My daughter took the picture, but this one I use is in Black n white
Liked by lynnkolars
HI @jjmbjar, Jan…I hope you get this as I am responding by hitting a reply under one of my sent messages! Sure hope they fix this shortly. Too bad the red didn’t come thru too well in the photo. I thought I was getting to feel “at home” on this site, but now I think not. This morning it said I had 3 messages, but I have only been able to see one. Now, even though it still says 3, when I click on it is says “none”.
i was referred to the Mayo Clinic by my endocrinologist after a year of problems with my thyroid….including the excess of calcium in my blood, and three stress fractures. Dr. Farley was my surgeon in Mayo and he was so encouraging and wonderful to me. The day of my surgery I was able to go out to dinner that same evening. He removed two nodules and I do not even have a scar that is visible .I would never go anywhere else. I wish you luck and success with your problem.
Hi allegro…..if you have been wondering where I’ve been, it is not that I didn’t want to respond, but I am not that computer literate and I was having problems with the CONNECT site. Any,how, I now have an appt at Mayo, and I fly there on Monday the 20th. Originally they said to plan on 3-5 days there, so I ended up with 3.5 days based on flight home schedules. Then the other day I got a phone call that they have me scheduled me for surgery with another Dr., not Dr. David Farley. SInce I know nothing of the other one, we decided that I should talk with him before I commit to having him “whittle” on me. So I had to cancel my homeward bound flight and will have to rebook when I know better my schedule. I was so glad that you actually gave me a name even though I was not assigned to Dr. Farley. I’ve got the other Dr’s name written down somewhere and it is a name I can’t pronounced! But I am looking forward to getting back to Mayo and meeting him. Thanks again. (gailfaith)
Being a thyroid surgeon does not mean he is experienced in PARA thyroid surgery . Did he operate on your PARA thyroid glands ?
If one is having PARA thyroid surgery it is of utmost importance to have a Board Certified Surgeon who has done many successful PARA thyroid surgeries. Need a highly experienced surgeon in para thyroid surgeries
Hi Jan, if you have wondered where I’ve been, I was literally lost in the “CONNECT” site. Since our initial discussion, I now have an appt at Mayo and I fly there as of Monday 6/20. They suggested I plan for 3 -5 days there and I initially was going to be there for 3.5 days based on available flights home, ( I have 3 flights each way.) So I booked flights there and home for Jan 25th. Then I got a phone call from Mayo saying that they have me now scheduled for surgery on the 28th. So I had to cancel all my flights home and will re-book when I know my schedule. But the Dr. they assigned to me I have no knowledge of so we decided I would meet and talk with him to learn of his success in PTH surgery, etc. However, they are holding that surgery spot open for me until I decide what to do. Mayo never ceases to amaze me in how they try to accommodate us patients as initially they said I would have to return if surgery was indeed indicated. I agree with what you wrote to allegro about knowing the background of the surgeon who will be working with you. So I’ll let you know what transpires. How far north are you? I’ve been up to the Hudson Bay to see the polar bears and up to Point Barrow in Alaska.
Liked by Ali Skahan
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