11.7 calcium, high calcium and protien over a year, told it's urgent then told by GC wait 6 mo, help

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Keri88
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Hi,

New here. Scared out of my mind. Quick run down. In and out of ERS, more tests, cbcs, ct scans, hyda scans, etc. Blood always showed high calcium and protien. Lost 30 lbs, look like walking dead, feel lethargic,skin mottles, ringing in eats,nails pail all lunella gone, hair frizzy and falling out in massive amounts, do not grow hair on legs and arm hair disappearing, lymph nodes on neck swollen for moths,skin super baggy, stabbing pain under ribs (unbearable at times), and so much more. I'm 43. I have recently seen a Doc that said 11.7 is the highest he's ever seen and said it was urgent. He sent me back to my GC who has said this is all depression, in my head, malnutrition and thinks I've been taking the REDICULOUS amounts of head meds she's prescribed to me for a year now. One is lithium which is bad for parathyroid from what I've recently read. Went in to have blood drawn 4 times to see if this is what has been causing all my body changes in what feels like over night. My GC says it's not important, it can wait 6 months. Reading online it says that's the worst advice to take. I don't tend to trust the internet in general, but I don't feel I can live like this much longer. I can hardly eat. I have dentures and my gums have all but disappeared. It's so painful. I'm told to live on bone marrow soup. Do these doctors just not care or am I overreacting. I'm just defeated, i feel like after a year of begging, pleading and crying for help, I just don't have any fight left. I came here hoping someone could let me know if I'm crazy like my GC has told me repeatedly or if this could possibly be the answer I've been looking for.. also, my family believes my GC, because of the lack of results. It's a very lonely painful place.

Thanks in advance for any and all responses,

Keri

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11 Replies

  • Posted

    Hi!

    I'm certainly not a doctor, but I do believe that your calcium level is high. From what I've read, that is often a sign of hyperparathyroidism.  If you are not satisfied with the GP, then I would suggest you seek out an endocrinologist and request a new blood test.  Ask for your parathyroid hormone level and calcium levels results. I wish you the best. Follow your heart and trust your instincts. 

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    • Posted

      Thank you Sue,

      This has been hell. I really appreciate your advice. I'm looking for a new doctor. Having no insurance is a big big problem. I really really appreciate you and any words of wisdom on this condition you might have personally or from a family member would also mean so much, as I am completely clueless, aside from the internet.

      Thanks again so much,

      Keri

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  • Posted

    Hi! 

    So sorry to hear you are without insurance. That has to be so rough.  Do you live in the US? .... As for me, I was diagnosed with hyperparathyroidism. It came to light when my routine bone density exam revealed I had lost an extraordinary amount of bone. My GYN referred me to an endocrinologist, who through blood tests and a urine test , found out I had this disease. Both my calcium and parathyroid hormone levels were high.   An ultrasound was performed and it was discovered that I had a tumor on the parathyroid gland.  So in May of this year, I had a parathyroidectomy. 

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    • Posted

      Hi Sue,

      Yes, I'm in the U.S. So it's been emergency room doctors who really don't care unless you're shot. My quality of life is gone. I'm just desperate for someone, some doctor too care. And to tell me, what do I eat, do I take calcium and vitamin d or is that bad. I'm just so lost. I've had so many tests, but they focused on my liver as that's where the pain I have is, but it stretches across the entire length of my stomach under the ribs, so I had an upper gi and colonscopy, that's the Doc that finally said that my calcium was off the charts, highest he's ever seen, and needs to be checked immediately. I'm 5'7" and under 110 lbs, I truly look like a cancer patient, people stare at me like I'm on drugs. It's just been so unbelievably frustrating and depressing. My hips hurt all the time. I'm going to keep looking for a cash pay doctor, as I've gone thru all my money trying to get any answer. Thanks again! I hope you are doing better than you were were that you have had surgery. Thanks again!

      Keri

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    • Posted

      I don't want to get in your personal business but have you looked into Medicaid or another insurance plan?   My son is on Medicaid and doesn't pay for his medical care. The problem is many doctors don't accept Medicaid but thankfully some doctors do.   In your case, I would check on the Internet and find out what plans your particular state have to offer. (I live in NY.) ..... Perhaps, speak to a social worker at your nearest hospital. They should steer you in the right direction. .... you shouldn't have to suffer the way you've described. I sense the frustration that you are experiencing. Please keep me posted. 

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  • Posted

    Keri, You are corrrect that you need to act.  Ask for a referral to an endocrine surgeon dealing with parathyroid adenomas regularly.

    There are facebook support sites you can access by putting the word parathyroid into the search bar on fb.  I am on a few.

    I had slightly raised blood calcium and much fewer symptoms than you have, but still had a parathyroid adenoma and ONLY surgery will cure you.

    Keep asking for referrals and insist that you want surgery.  Point out to whatever doctor you have that you are at risk for osteoporosis and kidney stones and NEED surgery.  If you are polite but very determined, you will get results.  Just remember, you can always see another doctor if one is not helping you.

    Good luck and hope to see you on one of the parathyroid support sites on facebook.  Getting on there will help you get your family on side, as they can learn from all of us what this condition means for your body.

    Praying for you to get help quickly.

    Anne

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  • Posted

    Ask for calcium, PTH (parathyroid hormone) and vit D to be tested in one blood test.  High calcium + high PTH and low Vit D show you have an adenoma.
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  • Posted

    Hi Kerry.  I'm in the UK so don't know about USA practices but you seem to be getting good advice from your compatriots.  My wife suffered from Lithium Induced Hyperparathyroidism (LIH) and has had three glands removed.  LIH comes about after 10 or more years of lithium usage in about 50% of lithium takers.  I would be very wary about taking it unless you've had a good response.  I doubt if you'll find one doctor in your county or state who has heard of Lithium Induced Hyperparathyroidism so you'll just have to rely on your own instincts of whether to keep taking lithium.  The advice to look at Facebook pages is an excellent one.  In the UK there's a wonderful site run by Sally Bally called 'Hyperparathyroidism UK Action4change' (I think I've got that right)  which you may wish to join.  The support you get is just superb as I found out and the support comes from around the World.  Don't give up - I'd bet big money that you have Hyperparathyroidism.  Also make sure you get a surgeon who will look at all four glands.  It seems to me that in America you don't want to be going back for another operation if you can help it.  I've seen estimates that range from 5% to  25% of patients having more than one adenoma and most of these occurrences have only been found out during or after an operation.  Keep persevering and do try to get family and friends to help you.  Good luck to you

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  • Posted

    As I've stated earlier, I had hyperparathyroidism and as a result had a parathyroidectomy. In the course of my illness, I read quite a bit of material on this illness. Not once had I read about lithium induced hyperparathyroidism. So I am grateful for your post on the subject. What a valuable piece of information especially for this individual who appears to be suffering (and possibly other readers going through something similar). Thank you for taking the time to share this information. 

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  • Posted

    Hi Keri88:  After pathetic care by my docs I educated myself at www.parathyroid.com and sent them my records and lab tests and had my parathyroid surgery this past Monday, Sept. 18, at the Norman Parathyroid Center in Tampa, Florida.  I live in Dallas Texas.  It was the smartest thing I've done.  THey did a great job and I am recovering.  Went back to work on THursday - shouldn't have as I'm now fatigued.  Takes a few weeks to shake the fatigue.  But I don't have any more bone and muscle pain.  It's a great website written by James Norman, M.D., and it's a no nonsense, straight stuff encyclopedic education if you have hyperparathyroidism.  I suspect with a calcium level that high , you do.  After the age of 40, if our calcium levels are over 10, we should have our PTH tested and see if we have this awful, debilitating disease which is cured only by a simple surgery to remove the adenoma on one or more of the parathyroid glands.  I hope you have found some answers since your original post. 

     

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  • Posted

    I have just had a similar experience, it sounds like primary hyperparathyroid, you are not going mad you need surgery to remove your affected gland or glands and you will be back to normal, it is a fight to get there.

    You need to see an endocrinologist, the wait is long, you need a scan and then surgical referral, in my area to an ENT surgeon.

    I have had to fight every step of the way for blood tests, for referral, for advice, to try to co-ordinate as nobody wants to do anything in a timely manner. I am a nurse in primary care and have a hospital background, I understand how the NHS works and I have been frustrated to death by the whole experience. I have ended up going private for the initial endocrinology appointment because I felt I just needed to get the ball rolling and couldn't wait another 3months to be seen when I already had felt unwell for 2months.

    You will get better, you are not going mad, the symptoms are bizarre and horrible.

    I have been off work for 2 months, I only get full sick pay for 3, I have been told I have a months wait to see ENT and ? when surgery is after that.

    You will find more support from the internet than you will get from a GP, there are no NICE guidelines other than on surgical procedures its all a bit crap but you have to fight and unfortunately you feel so unwell its the last thing you have the strength or energy to do.

    Get well soon x

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