Once I started actively seeking a diagnosis it took a little over a year to find a surgeon to agree to surgery. I had at first been rejected by the University of Michigan for surgery - they didn't think I had it. My surgeon after the surgery made a comment that he is not convinced that PHPT isn't autoimmune mediated (at least in some instances). Symptom wise, One observation I had was the bone pain would kick in when my ionized calcium was at 1.34 or higher. It sounds like your doctor is onboard with monitoring, but make sure calcium and PTH levels are taken from the same blood draw. Does your insurance allow self referrals? That is how many patients initiate contact with their surgeon since its up to him whether surgery is warranted. It is such an insidious disease that creeps up so slowly you don't realize what's happening. For me I hit the wall a little over 2 years ago. I call it my controlled nervous breakdown. I was spiraling out of control. Couldn't think straight, always tired. Develop aches and pains that would take weeks and weeks to resolve and really strange thoughts of paranoia that sadly ended my career. I didn't know what was wrong with me. I hadn't had a solid BM in 3 years and was falling apart both physically and mentally. After I quit I started my endocrine journey and with the help of my primary care doctor and a very talented surgeon my PHPT has been surgically cured. I also for the first time am having consistently healthy visits from Norman. I showed no reactivity to Enterolab testing however I had developed multiple food intolerances. The only prescription I take is LDN. For me, this is a miracle drug. I'm not even on what is considered a therapeutic dose. Only 1.5 Mg's with no side effects what so ever. Thyroid wise, I just this week started on dessicated Thyroid. I have high hopes as my doctor agreed to a rather unusual dosing - one that allows me to up my dosage 1/2 grain every 2 weeksuntil I feel like I've hit my optimum level. Then we will draw labs to see where my numbers fall. Keeping my fingers crossed and wish you great luck if you find you need further investigation. If I can answer any questions, please feel free to ask.
Love
Linda
Hemoglobin in urine
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Thank you, Linda, for being so honest! It is so helpful to read that. There are days/hours/moments where I feel completely fine, and then there are the other ones, where I am wondering if I am falling apart both physically and mentally. It is the weirdest thing. For the first 40 plus years of my life, I was in excellent physical and mental health (and I am now realizing even more so than ever before how lucky I was). I can accept the fact that I developed LC and that I will need to be on a very strict diet for the rest of my life, as hard as it is. But what is up with all the symptoms? For a while this part of the body hurts, and then the next part. Then I develop pins and needles in arms and legs, they disappear, and then they come back, only to disappear again. Is this a vitamin B deficiency? I ordered the Metanx equivalent for that and it should arrive any day. Then the next organ or body part hurts. And what is up with the anxiety? This is just not me. I have always been the optimistic happy go lucky type. I really wonder sometimes what is wrong with me. Is this caused by IBD, by hyperparathyroidism, by some nutrient deficiency? I guess it could be anything! How do I treat it if I don't know what is causing it?LindyLou wrote:It is such an insidious disease that creeps up so slowly you don't realize what's happening. For me I hit the wall a little over 2 years ago. I call it my controlled nervous breakdown. I was spiraling out of control. Couldn't think straight, always tired. Develop aches and pains that would take weeks and weeks to resolve and really strange thoughts of paranoia that sadly ended my career. I didn't know what was wrong with me. I hadn't had a solid BM in 3 years and was falling apart both physically and mentally.
What would an endocrinologist do regarding pHPT that my PCP can't do? My PCP is willing to keep an eye on calcium and PTH. So far, she never measured the ionized calcium, though. How important, do you think, is it to measure the ionized calcium?
If I knew for sure that I had primary hyperparathyroidism, I'd fly down to Tampa to have the surgery done at the Parathyroid Center. But I am clueless whether I do or don't. My PCP said that she felt we were getting more and more out into the weeds. One time my calcium is elevated, next time it's not, one time they find hemoglobin in my urine, next time they don't, then they do a urine cytology and find atypical cells....she reordered that test and I had it done this week. I guess it will take another week or so for that result to come back. She also tested the thyroid and I have not heard back yet about that either.
I hope you will find the perfect dose for the desiccated thyroid and wish you all the best!
Sorry for rambling on and thanks for listening!!!
Love, Patricia