I ve been operated of parathyroid cancer in March 2015 in France. It seems very rare. I m looking for people with the same disease ? I am still in hypocalcemia after 8 months even with 3 g of calcium per day and vit D.
Have you ideas to go out ?
Recently have FINALLY gotten a diagnosis of PARATHYROID HYPERPLASIA?… After many years of fainting, blood pressure issues, kidney stones, ureteral stunting, a complete hysterectomy at 34 after ovarian cysts reoccurring….I had hoped it was HYPERPARATHYROIDISM…but my PTH wasn't high enough and the sestamibi and 3d scans and ultrasounds showed very thick glands? Does this sound like anything any of you have gone through or experienced, or should I be seeking another opinion?
View 1 RepliesMy parathyroid hormone is 98.1 intact, the reference range is 14-72. My calcium is 9.7, reference range is 8.7-10.4, my vitamin D level is 50, reference range 33-100.
My parathyroid hormone has been elevated for a couple of years now, but usually my vitamin D levels were a little low, so the doctors seem to think my parathyroid was elevated because of my vitamin D level. Now that both calcium and Vitamin D levels are normal my parathyroid hormone is still elevated. Not sure if there is any correlation to why my parathyroid hormone is elevated, but I have multiple nodules on both left and right lobes of my thyroid. My left lobe has 3 nodules under 1 cm with one measuring 3.1 x 1.3 x 1.6 cm and my right lobe has one under 1 cm with the other 1.0 x 0.4 x 0.6 cm.
December 2013 I had a biopsy on the larger one on left lobe 3.1 cm and was benign.
I haven't been feeling well for more than two years now, doctors just tell me to see a psychiatrist, I am on a antidepressant but it really hasn't helped me that much.
I am being referred to a surgeon to discuss a parathyroid operation. I am waiting to go for a scan. Can anyone tell me what the scan entails? I know dye is put into you. How long does the scan take?
View 42 RepliesI have had a raised parathyroid hormone blood result recently also a raised calcium in the blood result. I had raised calcium levels several years ago but after a scan of my parathyroid glands which showed no growths it was put down to lack of Vitamin D and called secondary parathyroidism
I was told to increase my Vitamin D levels which I did and my calcium level dropped. I have continued on the supplementation. I have severe sleep problems, am tired and grumpy, my hypothyroidism been under control for the last 8 years. I am borderline diabetic. Almost 73 years old.
I'm a 44 year old female. Earlier this year I went to the doc with lethargy, aches and pains, headaches, Backache, feeling sick, amongst a heap of other basic symptoms for a menopause check to which it came back as positive but they also tested me for low vit d which came back as deficient so checked my parathyroid hormone which was elevated. My Calcium they said was fine so iv been treated with a high dose of vit d pills for three months. Recent testing has shown my Calcium is still stable but my parathyroid has increased further but the doctor said she will have to do and enquires as to what to do next as she expected my parathyroid to balance out but as it isn't I haven't a clue what that all means if my Calcium is ok as I know they are all linked. Is there any clues or experience you can offer as to what it all means.
View 2 RepliesI had parathyroid surgery 3 weeks ago, apparently i had a rare type of disease as my vit c and calcium were normal but pth off the scale, they removed 2 glands one had a tumour attached to it, so had lymph nodes removed to be sure it was all out, i now have severe hip pain in both hips and thigh bones and most days struggle to walk yet calcium is normal, awaiting lab results on the tumour, my concern is the severe pain and tiredness, any ideas ?
View 2 RepliesI am 48 years old and been suffering many years with pain all over my body, my hip pain is the worst, closely followed by shoulders, wrists and hands, then buttocks, more recently knees. My history has been a bit of a nightmare - diagnosed first as fibromyalgia, then early RA, then back to fibro, abnormal antibodies (autoimmune disease). Years ago I complained to my gp about mouth ulcers and was discovered I was low in vitamin D. Two years ago I started suffering extreme head sweats and a few weeks ago I realised that I was still getting mouth ulcers even if I was just a few hours late taking my Calcium Vitamin D and told my gp, adding that I was concerned that I was still low in vitamin D. Blood tests revealed that I am, even though I never miss the tablets, get lots of outdoors when able, eat loads of fish, eggs etc. So, doc thinks its a parathyroid tumour and according to the website the only 2 reasons you would have low vitamin D is 1- if you don't actually get any and 2 - you do have a tumour. So its looking pretty much like this is the reason and I am guessing surgery will be necessary. My concern is, my muscles and bones ache so much, I walk like a very old woman.
My life has really been mostly bed bound for the last few years with pain, having to use a stick a lot when I do go out - on good days I will be out as much as possible and walk as much as I can-yeah the consequences are usually the next day in bed, but I try to push it as much as I can. I have put so many things on hold, work and social and missed out on so much. Now, I am wondering - if and when this is sorted out, the tumour removed (if the doc is right and I do believe he is) will my aches and pains go? Will I have a better quality of life? If osteoporosis has set it - can it be reversed? I have also noticed very recently things becoming much worse. If I move my hand in a different way the pain is unbearable and feels like something has just broken - my index finger has started moving involuntary, kind of jumping - is this related to anything?
I don't know if anyone else has experienced any problems after parathyroid surgery. My surgery was 3 weeks ago. I am experiencing on and off again periods of severe weakness and nausea. My labs have all come back normal. I almost feel bedridden at times. Very unpleasant.
View 10 RepliesCan I insist that my thyroid nodule is removed even if it is not cancer?
View 3 RepliesI'm a 21 year old healthy, active female. A 6 cm nodule was discovered in my thyroid about a month ago after I felt a lump in the front of my neck. I had an FNA which indicated that it was benign, however my doctor informed me a week later that due to the large size of the nodule, they can't be sure it's not cancerous. Based on this, he recommended I have surgery and that I won't know whether it's cancerous until the biopsy results come back after a lobectomy.
Since I discovered it a month ago it has become noticeably bigger. Does the risk of cancer increase in fast growing nodules or nodules that are 6 cm+?
I am a 50 year old who started having left back pain two months ago. After pelvic US discover 3.8 cm complex cyst. Gyro recommended waiting and follow up ultrasound, so two months later repeat ultrasound showed an additional 2.5 cm complex cyst, original was measured at 3.1 cm. Gyno Dr recommended surgery to remove left ovary and both cysts. I still have left back pain, some pain when urinating, constipation, so stomach upset. Part of me wants to continue waiting in pain to see if they resolve, but it's not fun having the not severe but constant ache in my left side. Have a history of thyroid cancer, but have been cancer free for 4 years. I am in perimenopause, periods are very irregular. Went 3 months without a period, had a period, and now it's been two months with no period. Have a surgical consult with gyn/ob at Kaiser Mr. Talbert in Sunnyside Oregon next Thursday. I need advice and suggestions on what to ask Dr. Part of me just wants to do the surgery and get it over with, but the other part thinks what if I wait and they go away? With my history of cancer (I had a 10% chance that my thyroid tumor would have been cancerous and it was) I'm a little leary of just saying that since there is only a slight chance of complex cyst being cancer I shouldn't worry about that. Maybe should have the cancer test?
View 1 RepliesA few months back my Dr was checking my thyroid - said it felt soft - sent me for blood tests (MANY hypothyroid symptoms!) (which were ok - TSH only 1.1) and an ultrasound which showed a small 8x7x7mm hypoechoic mass lesion on the lower left lobe of my thyroid. I had a FNA biopsy two weeks ago, today actually, and already found out last Friday that 2 of the 3 pathologists said they can't say what it isn't but to remove it asap and the 3rd said absolutely consistent with papillary carcinoma and to remove it asap as well... so now I am just waiting to have it removed. My Dr absolutely agrees and said get it out! He said depending how bad it is they will decide whether they just remove the mass but will possibly remove the whole thyroid... do they end up doing two surgeries or do they get in there and see its worse then they thought and make the decision right then and there? He explained it is THE cancer to have - although no one wants any cancer... that it is very treatable etc. I'm just stressed and wondering about the whole thing. Is it normal to have normal thyroid levels but have PC?
View 3 RepliesDiagnosed with papillary thyroid cancer an year ago and had both glands removed. Did iodine-131 after that. Cancer scan did not indicate any cancer cells spread. Thyroglobulin numbers in my blood was dropping along with my first I-131 treatment until it stopped dropping, that was when my doctor advised me to take a second pill which was about a month ago. Today went back to the doctor and he said that the numbers aren't dropping anymore, so he advised me to check up my lymph and lungs to see if there are cancer cells in those areas.
View 1 RepliesI had another round of RAI in March as my Tg never went into the single digits after my first ablation 5/12.
I was in Irvine, CA to get neck fusion surgery at Hoag when an MRI showed a suspicous lymph node. That led to an US and a PET/CT. (obviously ACDF surgery on hold)
PET/CT showed about 5 lymph nodes consistent with metastatic disease, so the endo I saw in Irvine recommended neck dissection.
My sister had a great ENT in Vegas so I went there and had the surgery a week ago Friday. He was going to do a modified radical, but when he got in there he said my neck was "full of disease". He counted 8 black and hard lymph nodes and cleared out my entire right side.
I am waiting for the path report. Maybe cause of the holidays it is taking a while. I hate waiting!
I have since come to LA where my inlaws live and am going through the process of getting an appointment at the City of Hope. I do not want to get further treatment on Maui where I live. I need a little better level of care.
I'm kind of anxious as I feel I am in limbo land here. I've had the surgery, but I have had no follow up yet. No bloodwork, no nothing.
I know that when I finally get that appointment at CoH I will get the evaluation and perhaps further treatment I need.
Is it usual to have another RAI after a radical neck dissection? This surgeon said that my last round of RAI probably did not work because there was so much cancer in there.
Oh, I also have a small nodule on my lung. Haven't addressed that yet, and that kind of worries me as well.
Geez. Since dx last April of 2012 I have not had anything go well. The Endo thinks I may have the BRAF gene. I asked this surgeon to test for it and he said he didn't know if his hospital did that. I guess I'll find out when I see the path report and/or talk with the doc.
I am anxious about my next steps. I've been out of work now since Feb. 19th and my medical leave expires August 19. I am going to try to get an extension so I won't have to go on COBRA.
I have general query regarding parathyroid disease in the context of women with 50+ years of age. Is osteoporosis a symptom of this kind of disease ? Or, does it need to be both vitamin-D3 & Ca to be high in Blood too ? For example, if x-ray shows osteoporosis & also vitamin-D3 (25 OH) is too low (i.e. < 15), can we simply rule out parathyroid disease here ? Or, to be sure, we need to test serum Ca as well ?
View 1 RepliesI was diagnosed with kidney stones and parathyroid disease in March 2010 whilst being in hospital as a result of high calcium levels (3.7 mmol/L) and significant pains in the back. A stent was inserted in order to help the kidneys and I went through a number of tests (Mibi scan, ultrasound, DEXA among others) for identifying the gland(s) that were overproducing the hormone for calcium (201 serum PHT). While I was told that the stent should not remain longer than two months and that I should have the stones removed as soon as possible, I have not been scheduled yet for the removal (ureteroscope). During the last month, the stent has become very uncomfortable, I cannot walk for more than 10 minutes and I feel very tired. I went to the A&E but I was offered only muscle relaxants and painkillers and I have not seen any improvement as a result of these. Simultaneously, I am waiting for the arrangement of the removal of the parathyroid gland.
Is there anyone with similar experience? Is it normal to have that long the stent and have these symptoms? And is there anyone that has gone through a removal of parathyroid glands? Any information would be most helpful.
I have nearly all symptoms of a bad parathyroid. I am changing doctors as I am not pleased with his responses. My parathyroid hormones have been high for two years+. My calcium level stays at 10-10.4, with anything over 10.5 being considered high. Do I just go to a surgeon or what do I do? With sudden symptoms beginning over two years ago, I feel it is a bad parathyroid. In my last blood work, my VIT D was even LOW, which I understand can also be a symptom.
View 6 RepliesSeen a pain doctor who suggested I get mr thyroid checked although it has always been normal but he said I should get my parathyroid tested my gp has only ever done 2 test in his 25 years of being a doc.
View 1 RepliesI had an ultrasound today and it says that there is "a homogeneous appearance to the echotexture of the thyroid gland. Bilateral thyroid nodules are observed. There is evidence of a complex cystic and solid lower pole right thyroid nodule measuring 1.8 x 1.0 x 0.9 cm. Within the left thyroid lobe there is evidence of a hypoechoic midpole left thyroid nodule measuring 0.6 x 0.4 x 0.7 cm. Bilateral thyroid nodules. Dominant nodule is a complex cystic and solid lower pole right thyroid nodule measuring up to 1.8 cm. what does this mean?
View 1 RepliesI have 3 thyroid nodules and 1 cyst. I have been advised to have a thyroidectomy. I do not want to go this route yet and am searching for some natural remedies. I have heard of using iodine but to be careful do to the fact that that might enlarge the nodules. I recently found out that I am very iodine deficient from a lab result. I have heard of iodine trapping, whereby the iodine taken in when their is a severe deficiency is immediately 'trapped' and held in the gland in order to preserve some iodine for the use of the thyroid. I would like to proceed with caution and try the iodine therapy.
Does anyone on this board have any experience with successfully dissolving or at least reducing the nodules/cysts?