hyperparathyroid research

[stella5349]

I have the report back from the ultra sound done while attempting to do the FNA Monday. The report confirms the possibility of this being a hyperparathyroid adenoma and suggests getting my calcium level done.

I did that and the result of that are within normal range 9.3. BUT from what I have read a normal calcium level does not rule out a hyperparathyroid. They mention a PTH test too. and states if that level return high then that could also support the hyper state of the parathyroid. DOes anyone understand this?

Does anyone here know what I need to do. This could shave off at least 5 years of my life - most hyperparathyroid cases results with a stroke in the patients even prior to getting a DX on the parathyroid disease. and Brittle bones will always happen.

I can't seem to get either the ENT or the MD to call me back and I can't seek help fron the medical college here without a proper referral. There is an endo up there that may guide me to  getting a resolution - but she won't even set an appt without a referral. and no one called me back to get that up there.

As for that ENT - The link Kitty sent me supports NOT even seeking him for surgery - they are just not appropriate surgeons to look at this.

I still don't even know if the nodule could be pap cancer either b/c the FNA was unsuccessful due how low it is. Quote from report: "An attempt was made at the location through ultra sound guided needle - but due to the deep lesion - my attempt to obtain samples were unsuccessful."

LAst quote: "Note is made that the lesion may represent a parathyroid adenoma. "

and it does state "The patient had significant discomfort during these attempts. "

Any response please !!!!

[stella5349]

hooray - THAT WILL BE A RELIEF.

[utahmomma]

Most of my acid problems (and my son's acid problems too) disappeared after our thyroids were removed.  

[Thypatient]

How do you do that?

My stomach problems did get considerably relieved after surgery, along with a boat load of other symptoms.

[stella5349]

I wish you would open your file so IM's could be sent. There is no profile to send to.

I just knew after this happened Monday I was on to something.

Thank god for radiologists.

How's your acid now/ I heard it disappears right after the removal?

[Thypatient]

I didn't know I had anything like this.  Looking back stomach problems were the thing I dealt with the most - reflux, nausea, vomiting, you name it.  (I also ended up having gallbladder trouble but I truly feel that stemmed from this issue.)  I also had the other symptoms you describe.  One symptom was malaise - feeling something's not right but not being able to describe or pinpoint exactly what, why or how I'm being affected.

I saw on the other thread you got a call back for an appt - that's a relief.

[stella5349]

Thanks a whole bunch everyone especially Thypatient and flkeys

(Cheryl .. you know you are my favorite tater already LOL )

Trust me I have been on www.parathyroid.com /

yes I have read all about the surgery and thank you Thypatient for letting me know about that University. I think it may be the University of Chicago. I have a friend checking on that to see if they offer the Minimally Inavasive Radioguided PArathyroid Surgery that is featured at the Tampa Bay hospitol.

Did you Thypatient or flkeys have acid reflux as a symptom? I have suffered for years with it on and off and now reading the symptom list from parathyroid.com I suffer from 14 out of the 18 symptoms associated with this disease.

I was betting that my thyroid condition would pose a problem with this parathyroid situation too.  How do you feel your answers were met when you visited your doctors?

Back from my morning post today - that wonderful radiologist I spoke of from last night DID call me back and has explained my situation to an endo. This endo will see me without a referral and will be contacting me soon to get in. That was the best news ever today. :)

From there I suppose (if he knows his stuff with parathyroids) I will be getting that PTH and Sestamibi scan along with calcium level checks both serum and urine.

I am doubting the Sestamibi scan from what I have read. How resourceful do you feel it was with your situations?

I believe looking at my symptoms I have had this for about 3 years. Lately though _ I have alot more happening within the last 6 months. Bones on left side hurt - I thought were muscles aches and was seeing a Chiro. The acid is unbelievable sometimes. Insomnia within the last 2 months.

(DLA knows that)

and left lower back pain - I was always saying I felt my kidneys were hurting. Not to terrible pain and not all the time...... just achey. Mild headache every darn day for over 3 months. and neck feeling like something had a hold on it.

I am sure others on the board can agree when I first came here - this is what I was looking for when I posted questions on these symptoms.

Hope to hear more - you all have again inspired me to believe there is hope again:)

[ChitChatNine]

And mine is kind of the opposite .. I made it a point to go for yearly physicals since they found my kidney stones and, thus, they found the thyroid nodules and ensuing cancer ... so I guess we both are living proof how valuable Dr visits can be.

C~

[flkeys]

I had high calcium for 18 months.  It apparently takes a long, long time for kidney stones to form.  However, while I being worked up for my parathyroid condition, it turned out I also had thyroid cancer.  That's a whole different story.  Right now, I'm just addressing your parathyroid problem.

[ChitChatNine]

I reposted your ? on a kidney stone site I belong to .. the moderator is a dialysis nurse and there is great knowledge of kidney stones and parathyroid issues so maybe you will get some more responses there, too, keeping in mind these are excellent to date on this board!

Cheryl

[Thypatient]

Try not to worry.  I had to wait longer and mine was more obvious.  Again, since they already know they're dealing with two different issues with you (my thyroid diagnosis came later), it's probably taking longer to pull all the info together.

While Dr Norman's web-site is great and he seems like a great dr, I would find it hard to believe you’d need to travel that far.  My dr learned all this at a university hospital in the mid-west - I think the Chicago area.

Surgery is usually, but not always, necessary.  Between diagnosis and the decision whether or not to do surgery there are several tests - so that too takes time.  One is what flkeys talks about above, but there are also ongoing blood and urine analysis tests.

I too had the Sestamibi scan but it proved inconclusive.  Dr Norman’s site says that’s because it was done wrong.  But I think it was because my (unknown at the time) thyroid problems were eclipsing the parathyroids.  I say this, again, to point out that having things going on with the thyroid complicates matters.

Damage to the kidneys is one of the biggest effects.  Because of that, while waiting, I was advised to increase water intake to keep the kidneys flushed out.

Obviously, if too much time passes without you getting answers, then you need to move on.

Good luck.

[flkeys]

P.S.  I was ill with a high calcium level for over a year before I was diagnosed.  And my surgeon was a Surgeon who sub-specialized in endocrine surgery and surgical oncology.  After surgery, my aches and pains and mood swings were gone.  It took about ten weeks for my voice to return to normal.  With a sestimibi scan, you are given a pill to take, then you come back three hours later for a scan of your neck.  If there is a adenoma, it will light up.  There's also a wonderful website called parathyroid.com that will tell you everything you need to know about hyperparathyroidism.

[flkeys]

Just relax.  I had my parathyroid removed two years ago.  The only way to find the adenoma is to have someone order a SESTIMIBI SCAN.  This can be ordered by your PCP or endo.  Once confirmed, a endocrine surgeon, or in my case, I had an endocrine/oncology surgeon, remove the growth.  It is very delicate surgery because it is so close to the vocal cords.  Once it is removed, and your calcium is monitored for a few days, you will feel instantly better.

[stella5349]

Thanks for the info. I forgot to get that out. I am trying to get that endo situation under control.... tough through as you read.

[stella5349]

Most likely this is what happened  - during the FNA Monday, when the surgeon was going in - he speculated that this IS a hyperparathyroid issue and not nodule. BUT - do to the ORDER from the ENT surgeon - he went ahead with the attempt to do the FNA. (funny how you are at the mercy of paperwork whether it is right or wrong ) :( BAD MOVE ON HIS PART !!

While in there as he poked around - he may have knicked the bad parathyroid. Due to that happening - the hormone in the parathyroid leaks out into your blood. Hense bad hormone and extra calcium spilling out into your body and sucking off your bones.

On top of that - I have this bad cold too. As we all should know by now - having a thyroid condition and getting sick like regular people -  TSH can get out of whack due to viruses and colds. - so I suspect I was also having an issue that my thyroid meds and this virus was attacking my body also. Again , Armour patients will have ups and downs during a regular month with TSH/ when we get colds and such - it can be worse. Also my cycle came to on Tuesday - so again another hormone issue was in place that effects TSH levels.

I tried AR's method of getting someone to move on this - but I believe NOW- especially under the ENT's order - that he professionally realizes HE MADE AN ERROR. and could of seriously hurt me. - that is why I believe he refuses to call me back. I have called every day - with no response. and  I need to move on to someone else. As for my MD not getting on top of this. He did what was asked - he gave me the calcium test that came back 9.3 - which is normal AT THAT (and I say again) THAT time. He is not a specialist on parathyroid - so he may not realize this whole deal - with getting knicked in the parathyroid it needs to be followed closely. ALso he has and will not order a PTH test b/c of the 9.3 calcium. Or at least - not in a rush to do it.

I have called 3 endo's - and no one will see me b/c I need a referral. I desperately have hounded the MD's office this week to get that going (even the MAYO clinic) will not look at what is going on without a referral - so my hands are tied at this time until a proper referral gets sent out. My last attempt to get this moving along was yesterday - when I called the MD office again to see how things were coming. I was told to call back on Monday to talk with the nurse - she was off yesterday ( lucky her!!)  The MD had no interest in speaking with me. Nor has anyone called to address the findings on the FNA reprt on the parathyroid issue.  So I suffer.

I did however - call back the radiology department yesterday and spoke to a great radiologist who confirms getting knicked in the parathyroid is a great possibility. I explained my cold and other symptoms - and he agrees this may be what happened. It won't kill me - but it will make me very sick this week until the poke wounds heal inside again. He is seeking for an endo for me - last night he called back with a name and he will try to call him Friday and call me back. Maybe I can get some help from him.

PArathyroids are very different from a thryoid problem. The PTH blood levels are completely oppisite from a TSH one. and when you fall into a normal calcium level as I do, on an average of 12% of hyperparathryoid patients can have normal calcuim levels and be hyperparathyroid. This is not good - stroke and kidney failure can be your destiny. It may explain the TSH being a bit hypo and not regulating also for me.

Well if anyone knows how to find a parathyroid endo - let me know. I search my links and can not seem to find any listings in the parathyroid area. The only specialist is a Dr Norman in Tampa.  This information was from Kitty and it sounds like a great situation for me - But just to speak with him is an $1100 consult fee on the phone. Not to mention trip - travel- and lodging charges to stay there for the testing. I suppose if I win the lottery this Saturday - I am off the Florida. :)

How long does this bruising stick around after an FNA? - It looks terrible - It is obvious that I didn't go through a typical FNA procedure!!  What really is odd is - I have a tiny bruise right by my left collarbone. (That my friends, is where the "nodule" was found on the ultra sound) and that is where the FNA was being done -  The FNA needle was going through the neck near the thyroid but was being guided way down near the lower part near my collarbone. so any average Joe should be able to figure out this WAS NOT a thyroid nodule. ( As the radiologist knew that!)  I don't think even after RAI a thyroid hangs that low and forms a nodule. Totally malpractice here, in my opinion. But what's more important - getting better - or being rich? Right now - I want to get better.

Thank God I feel somewhat functionable today so far. I coulfn't go through another day like the last 3 was.

No posting for me tonite for TGIF - someone else can start it up - but I really need to rest.

If anyone has some free time to help with finding an endo (parathyroid) thyroid surgeon or facility - I will be in debt for a lifetime. :)

Thanks

[stella5349]

I would be listed as a hyperparathyroid disease - not hypo.

AR - I was on the phone with the MD office twice yesterday -  I read through your threads on what to do and I pretty much covered everything except the begging and crying at the offices so far.

I guess at this point - I am so overwhelmed my head is spinning - I have gotten so sick with this cold going around I feel I can't even think right now.

From what I read - the 9.3 calcium level is normal and no one will really take this serious until I am in the 10.3 range. Even there it sounds like a problem getting any help.

I am scared of this ENT now. I don't believe he read that ultra sound film - How could he? If an interventional radiologist suspects this hyperparathyroid - How could he not make that assumption too?

I might of totally damaged myself even having the FNA if this is hyperparathyroidism. If he penatrated the tumor (without getting a tissue sample) the healing process may develope scar tissue and going in to remove the parathyroid could be more difficult.

I just don't know which way is up and being sick makes this worse.

[alwaystired24]

I have recently been diagnosed with Hypoparathyroid Disease. I am 46 and have just learned that I have severe Osteoporosis. I went to an Endo, had additional blood work and urine tests done. The Endo says she felt a nodule on lower right side of thyroid. I have an ultrasound to be done Friday, I will continue to read this post often for new info and will post any new info I learn. I have learned that this problem is very rare.

Gentle hugs to all.

[Thypatient]

PTH is the hormone chemical coming from the parathyroid glands to trigger the bones to give calcium to the blood.  A high reading of it or calcium in the blood indicates the glands are overworking, or hyper.  I know an ademona on the gland can throw off everything, so bloodwork and/or tests can come back okay and there can still be a problem.

You're probably going to end up having to see an endo, no matter what.  Especially since you have thryoid issues.  They will guide you on what you need to do.

If surgery is needed, it 'has to'  be a surgeon trained in this kind of surgery.  That could be a general surgeon or it could be an ENT.  An endo knows who has this training.

Mayo Clinic web site has some good information.

[kitty9309]

I got your PM and responded with thoughts and more links.

I asked you where the nodule was, but then I came here and saw that the report mentions the possibility of parathyroid involvement.

I like AR's ideas.

[kipland]

I'm sorry that I know very little about the parathyroid issues.  I just wanted to let you know that I'm thinking of you and hoping you get the answers that you need.

As usual, AR had some great suggestions.  I actually liked the last suggestion.  It sure would get attention now, wouldn't it?

Also wanted to mention that the words in the report that said "The patient had significant discomfort during these attempts.".......umm, is that the understatement of the year?!?!?!

We'll keep posting to this so it gets bumped, and maybe someone will be able to help you.  That, along with trying to post on the doctor forum - have you tried that??

[AR-10]

Call your MD. and talk to his nurse/assistant. Ask for the referral you want. Then call back every day and see when your appointment is. Every day.

Annoy the ENT the same way. Put them both on speed dial. Might want to focus most of your energy on him, as whoever you bug to death is going to hate you, and it sounds like you just got on good footing with your MD. The ENT, you can live without.

But I'd start with the MD.'s nurse.

OR

Talk to the lady at work who has a relative that does surgery at Mayo. See if you can work that angle and get permission to fax him your medical records.

OR

Go to the facilty that has this new Endo you mentioned and do what I did. Beg and cry until you get an appointment.

OR

Find out what kind of surgeon you are looking for, and try the direct route. Again, begging and crying and threatening to set fire to the reception desk may be required.

The last one may not be very effective.

Wasn't the person who tried to do the FNA a surgeon? Can he help you? If not directly, can he give you a referral?

Just throwing stuff at the wall to see what sticks...

If you accidentally end up with two referrals, keep both appointments. :)