YEP, got your pm, thank you...hope you got my return one. Yeah, being at a range of 32 after 2 years of EXtremely high levels is very very reassuring...but also a 'puzzle' which my doc really WANTS to find the answers to...it may as 'simple' as radiation causing the levels to flare (for 2 years tho?)...so yeah, it's all good right now! I will be thinking of you, thypatient for your levels to level off later this month. Right now, my hypo-thyroidism needed a new dose of levothyroxine (25mcg) as I had been takin g the lowest dose 12.5mcg for years now...but the TSH got up to 3.2...endo wanted it to be lower than that. Hope the increased dose will help with the sluggishness/extreme fatigue that was attributed to chemo/radiation, but to ME, not after 2 years~! Yeah, I guess I expect alot out of my body...but it's why I stay strong? ALL my best to you'all!
~juli
Way to go...!!! Plus, a 32 is about right smack in the middle of the range - which is even better.
(Hope you got my recent pm.)
Very sorry to hear about your hyperparathyroidism and what the high levels have done to your thyroid as well. Good luck in your surgery. This is also for thypatient: I had my pth/calcium/vitamin d levels checked yesterday, doc just called me and pth has finally gone back to NORMAL (32)...hypo-thyroidism has jumped a bit, so increasing the dosage of levothyroxine....so this is GOOD news finally! We have NO CLUE why my PTH was so high for 2 years now (highest was 878, lowest was 342)...BUT we think radiation/being irradiated for breast cancer/lymph node disease MAY have affected it, as no one has a clue...but good news...levels back to normal~! We'll retest in 4 weeks, just to be sure. Was vitamin D deficient as well...but on 1000iu's of vitamin D...either of you ever been vitamin d deficient? That happens frequently and may have played a part in my breast cancer (I was unknowingly deficient at that time)...good to have that checked.
Anyway...please keep us updated...especially about the Hashimoto's disease AND your parathyroidectomy...good wishes sent your way! ~juli
Thanks for sharing where you're at and best of luck on the 22nd! Try to let us know how the appt. on the 13 goes - I'll be curious, myself.
Take care.
I was finally diagnosed in October with hyperparathyroidism. I have had symptoms (migraines, gerd, constipation/diarrhea, palpitations, volatile bloodpressure and etc) for about 10 years. I have also had slight to moderately high calcium levels over this time but my doctor just didn't put 2 and 2 together. I have been treated for all these symptoms individually. Not only that, I have been treated like a hypochondriac by any on-call doc I had to see when my doctor wasn't available. Finally, my doctor retired and a new young female doctor saw the high calcium, said it should never never never be high and did some other tests. She was able to diagnose me with a week. Now I find out from her that, since I have had this for so long, the ongoing high PTH output has caused my thyroid to malfunction. I have Hashimotos disease. This is an autoimmune disease that causes my body's immune system to attack my thyroid and destroy it. In other words, my thyroid is being pulverized by my own immune system and will not even work in time. It is swollen and has developed nodules which can become cancerous (only a small percentage do, though). Since I am past child bearing age and have had a total hysterectomy is will be in my best interest to have my thyroid removed when the doctor removes the tumor in my parathyroid. This is not nearly so clear cut for those who are of child bearing age or who still have their 'female parts'.
Someone mentioned looking into Dr. Norman's site regarding all this, and I definitely agree. He even has a video of himself doing a parathyroid tumor surgery and it is fascinating! It's a great site for information. Here is the address: http://www.or-live.com/tgh/1331/
My surgery will be on January 22, but I must go to an appointment on Jan. 13 in Spokane, WA to clear up all the questions about the Hashimoto's and whether or not my doctor will be taking the whole thyroid out or not. Apparently, at times, they only take out half?
My best to you all!
Kathryne
Having had a parathyroidectomy already in 2002, with migraines, GERD, sleeplessness, none of that was helped by removing the adenoma. I now have primary hyperparathyroidism AGAIN...with a PTH level of 878...calcium normal 9.2. Surgery IS always warranted, but again to reiterate, it does NOT ALWAYS relieve your symptoms!
I GAINED symptoms when I had my surgery, tho I'll also reiterate the surgery HAD TO BE DONE...it's the ONLY way to relieve the high calcium (which I DID have in 2002).
NOW is a puzzle....no one seems to know what's going on, with very very high pth levels, and normal calcium. What's been going on with you? Did you end up having surgery? Did they find an adenoma? Even with Sestamibi Scan, my tumor was NOT found in 2002...going to have another in January, we'll see if one shows up then. Also had breast cancer in 2006. Let us know what went on with you? THX! juli
I agree totally with Thypatient.
Hyperparathyroidism is overlooked in a huge way - and I think because of it being to some degree rare - most doctors and even endo's don't look at the whole picture together.
It looks like you have checkout some information on hyperparathyroidism - which is wise.
Hopefully this week - I will find out exactly what the nodule or parathyroid thing is for me. ]
Good Luck
Coming from my experience, in reading the things you describe I'd say your dr has you pointed in the right direction.
The next course of action would be the 24 hour urine analysis. Those results will give a better idea of what the source of the high calcium is. Your dr should know where to go from there, regardless.
I can't really speak to the Hashimoto's issue (perhaps someone else here can) but I do know that thyroid and parathyroid issues can be happening at the same time.
Unfortunately, should you have a parathyroid tumor, surgery is the only resolve.
Let us know what happens next. We'll be here for you.
Good luck.