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Hi new here and already had Surgery

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Hi new here and already had Surgery

Post by cburleson on Sun Jul 31, 2016 5:14 am

Hi Everyone. I'm new here. I just recently practically self diagnosed myself with a parathyroid tumor. I had started losing my voice. I like to sing and noticed I couldn't sing at all anymore. I went in to my pCP and asked them to check my thyroid area. Did an ultrasound and found a 2.1 cm mass. when I asked them what it was they weren't sure. Mentioned it could be parathyroid or lymphnode and my calcium levels were slightly elevated. I was getting ready to head out of the country for vacation that Monday and this was Friday. I did my own research and everything pointed to parathyroid tumor. I ran to Theranos which is here in certain drug stores in Arizona and ran my own PTH hormone test as I wanted results before I left the country. Yes my PTH levels were elevated. That was a doozy of information to leave on vacation with. But while in Costa rica I did lots of research and figured that The norman Parathyroid center in Tampa would be the way to go. I reran blood tests when I got home and sure enough they were even more elevated. I set up surgery in Florida a few weeks later and had the surgery done on July 13, 2016.
I'm only really a few weeks post op and it's been a crazy journey. The Surgeons there were AMAZING! I think what I was most surprised with though is that my recovery and experience seems to be more intense than I was expecting. Like I said, I had been losing my voice. Prior to surgery I had asked if this could be from the tumor. I was told no. I wouldn't say they said definitively No but it was pretty much we doubt it. The tumor would be soft tissue and not effect voice box. Crazy though, that this is the only reason why I even knew something was really really wrong with me. Also I have suffered really weird blood sugar issues most of my adult life. A few years ago my blood sugar was dropping so low they suspected insulinoma. I was sent to Stanford University where they studied me and declared me an anomaly. I left with no answers to my BS issues but asked this surgeon could it be. Again, I was told no.....but when the doctor saw how big my tumor was he then told me I didn't have a bunch of problems. I had ONE problem with lots of symptoms and after my surgery I wouldn't have any of these anymore. So far this is proving to be true. I am no longer hypoglycemic and although my voice is still not normal, people have said it sounds better.
From what the surgeon could tell my tumor was 12-15 years old. He said it was one of the biggest he'd seen. Like top half percent. I also happened to be the youngest one there that day receiving surgery. Most people seem to be over 50. So I'm guessing from the size and symptoms I had that I started growing mine in my early 20s.
So the only thing that bothers me is ever since I've had surgery my body still has lots of aches and pains. I know some of it's expected after having your thyroid flipped around and dug around in but my chest hurt for a few weeks. I noticed my lungs have been burning a bit and sometimes hurts to breath. I was wondering if something to do with being under anastesia? Went to my PCP yesterday and she said she was concerened I may have had a Partially collapsed lung after surgery (notorious for happening in taller, thinner people) and maybe it opened on it's own. Also heard wheezing so concerened possible pneumonia from surgery. BOth checked out normal but not ruling it out as either could be either healing itself or not quite full blown yet. I guess I'm wondering if anyone else has had hoarse voice either prior to and or after surgery? Did it take a while to correct itself or did it ever? DId anyone else have chest pain and or develop into anything further?
I know I'm sensitive. Took me 3 days to come out of anastesia headache and my Calcium levels were lower than usual after surgery. Been supplementing with the calcium as directed and finally down to only 4 pills a day currently.
The websites made it sound like people recover to so quickly and I guess in some way I did but also seem to definitely still be struggling. Anyone else?

cburleson

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Re: Hi new here and already had Surgery

Post by Hadleigh on Sun Jul 31, 2016 8:47 pm

Hi and welcome to the forum

Well done on your self diagnosis, sadly that is the only way to get anywhere sometimes as doctors are not always helpful.

Unfortunately the info about speedy recoveries post surgery is misleading and although the Norman's site is very good I think they do make out its easy for everyone. We hear all to often on here that recovery can take many months.

My op took over 4 hours because previous thyroid surgery made things difficult for the surgeon, my calcium hit the floor afterwards but luckily recovered after a week or so but it probably took 6 months or more before I felt I was over the operation and things were stabilising. I have more bone, joint and muscle pains than before but I'm not sure of the reason, doctors are not really interested !

So anyway back to you, yes you will have many aches and pains while the calcium is directed back into your bones, your surgery was only a short time ago so it will take you a while to get over it. If you have had hpth for a long time your body must learn to deal with the new "normal" levels. I can't really shed any light on your chest, lung issues, hopefully just post op niggles, just keep a watch on things.

Have you had your Vitd, B12 and iron tested ? deficiencies in those will cause aches and pains, also thyroid tests as a hoarse voice can be a symptom of problems, we often see thyroid and parathyroid problems alongside each other.

Hopefully others will be along to add their thoughts but I think you just have to be patient and give yourself time to recover but obviously if you feel something is very wrong then seek help.

All the best
Nelly

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Re: Hi new here and already had Surgery

Post by cburleson on Sun Jul 31, 2016 10:13 pm

Thanks. I did have my calcium levels checked a week after returning home because my levels were very low but other than that they suggest testing two months post op. I feel half way decent or I should say no worse than before surgery. Sometimes I feel great and other times I feel I hit a brick wall and am exhausted but am guessing my body is going to take time to heal. Glad to hear that I'm not the only one. My thyroid tested fine prior so I'm guessing it's not that but after this round of meds if my chest still hurts my dr wants to run a ct scan and I'll pursue it a little further.

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Re: Hi new here and already had Surgery

Post by Admin on Mon Aug 01, 2016 10:02 am

On the subject of thyroid blood testing, there is no such thing as 'normal' levels.  It is simply not acceptable to be fobbed-off with 'normal' levels by inadequately trained doctors and Endos if you have hypothyroid symptoms.

Edwin
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Re: Hi new here and already had Surgery

Post by Tigerlily on Tue Aug 16, 2016 5:42 pm

Hello and welcome to our small but merry band!

It sounds to me as though you have received excellent service in Florida and that you are taking time to heal as it was such a biggie.

If it helps, I had 3-gland hyperplasia (also a bit of an anomaly apparently) and although I feel heaps better since my surgery in December 2014 I have had some uncomfortable chest pain since then and my singing voice is not yet back to normal either.

Nelly is right that the body has to adjust back to a normal serum calcium level and this will take time. I have also read (in some of Fuller Albright's early work on HPT) that bone remodelling can be quite aggressive following surgery. I have ended up with "creation of bone" and osteophytes in some odd places since my surgery (on the tops of both feet, across my clavicles and across the back of my shoulders, and now possibly in the base of both thumbs), and I think Nelly has experienced this phenomenon as well in the form of increased osteoarthritis symptoms that all seemed to come at the same time following PTH surgery.

Make sure that you are followed up and that your thyroid levels are tested and your chest pain investigated, and keep us posted on your progress.

Best of Wishes, Tigerlily.

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