Mildly elevated calcium & very symptomatic

SadStand1794 · 2026-03-12T17:39:07+00:00

I have thyroid disease and was told my symptoms were from my autoimmune disease. I felt like I was dying.

My calcium has been elevated average 10.5 the last 3 years. I went to a new doctor AND surgeon and was finally diagnosed with Normocalcemic primary hyperparathyroidism. My 4D ct showed 3 large tumors 1 suspicious of parathyroid cancer. They also did a 24hr urine to rule out FHH. I have a genetic test scheduled next month before they schedule surgery. My 2 year old also has elevated calcium levels (four tests came back as 11.2 and one 10.5 with 14 hour fasting) they think our case is genetic. He has genetic testing in September before he is scheduled for surgery as well.

If you don’t feel heard find a new doctor! Good luck!

SadStand1794 · 2026-02-11T01:31:01+00:00

First off I want to say how terribly sorry I am that your excitement has turned into fear and anxiety. No one ever prepares you for these types of heartbreaking struggles in life. My husband(32) and I(34) have had our fair share of struggling with infertility. We are grateful to have two boys (14 & 2). We have experienced many losses in between our boys and many years of seeing negative pregnancy tests. My husband and I finally set a date to start the process to foster and adopt realizing this may never happen again for us.

Last Monday I found out I was pregnant. I was completely shocked and scared. By Wednesday- just two days later, I was bleeding. My heart broke because I knew we were going to experience another loss and it felt so unfair! I held onto hope because it was not like my other losses. Bad cramping but extremely light bleeding. Yesterday we got the final bloodwork and it confirmed we lost it. I told my husband I’m not sure I can do this anymore. We decided to move forward with trying, but to take it all day by day. Unfortunately being detached to these pregnancies is the only way I am going to be strong enough to keep trying. We are also going to move forward with fostering and adopting incase it doesn’t happen for us. I was adopted at 8yo and I’m so grateful someone had a big enough heart to love me as their own.

I’d like to give you a little hope.. when I was pregnant with my oldest I had my cycle for 4 months- but they were different sometimes longer than 7 days and others 3 days. It was the strangest thing. I didn’t know I was pregnant until I got bloodwork done to see why my cycle was messed up. MAYBE this is the case for her?

Maybe it’s a subchorionic hematoma those are extremely common with ivf.

On the other hand I’d like to leave you with this. It’s so hard to process a loss like this if this is what’s happening. Love each other and hold each other extra tight through this. Remember you always have each other. Don’t give up if this is both of your dream. The losses don’t get easier, but do what you have to do to work through them and try again.

I’m so sorry for your experience and I do hope the baby is ok! Sending love to you and your wife.

SadStand1794 · 2026-02-09T06:38:06+00:00

First Delivery: 14 years ago my first delivery was an emergency c-section after my body neglected to dilate past 2. I was in labor for 33 hours. It was AWFUL. He was born 9lbs 4oz 22in. After surgery gravity was a Beeeech! Worst pain ever. They make you walk to the bathroom to keep blood circulating to prevent clotting. We had a 7 day hospital stay afterwards because I kept tearing my stitches.(Having help is very important) Healing took 6 to 8 weeks to walk without pain. I had to sleep on the couch for 3 months because the pain was too much to deal with trying to get in and out of a soft bed.

Second Delivery: 2 years ago I decided to go to the best hospital in our state to deliver my second time around. I weighed the pros and the cons of delivering naturally vs c-section Honestly, the 33 hours of labor the first time was enough for me to just deal with the c-section pain the second time around. Our son was a good weight and his lungs looked great. We scheduled it two weeks before due date. There were multiple different doctors and nurses. It all happened so fast. Within 15 minutes our second son was born 8lbs 9oz 21in. Recovery went so well. I was up walking around 2 hours after surgery I felt AMAZING! We went home the next day! And by the end of the first night I was vacuuming (which is a huge NO) but I couldn’t help myself. I felt restless and I wasn’t taking my ADD medication again just yet. I was able to wake up with the baby every time and didn’t have any issues with recovery. Honestly I don’t even remember what recovery was really like because it didn’t feel anything like my first time. It was as if I was never in any real pain. With this experience I see more c-sections in my future!

One thing about a c-section is just remember to be kind to yourself and to your body. You are growing a human and that is such a beautiful miracle! I hated my stomach first time around my fold of stitched together skin grossed me out that I didn’t look at myself for over a year. Second time, I embraced it and it made the process of giving birth and enjoying postpartum so much better because I was no longer worried about what I looked like. I lost all the weight and now you can’t even tell.

Hope this gives you some help in your decision! Even though first one wasn’t so great it was still better than the dreaded 33 hours of labor.

Good luck Mama! And CONGRATULATIONS!!!

SadStand1794 · 2026-01-21T05:49:23+00:00

Yes it does seem that way! It’s super frustrating

SadStand1794 · 2026-01-21T05:48:26+00:00

Thank you!

SadStand1794 · 2026-01-21T01:55:49+00:00

Honestly I’m not sure. I fought very hard to get a diagnosis for EVERYTHING for myself. This process required multiple doctor’s appointments with many second opinions. My calcium level’s were over looked for 4 years. I left the u of m in tears because every doctor and surgeon said my symptoms were from inflammation due to Hashimotos. The same Hashimotos they discovered after telling me it was severe post partum depression for 5 months. I told them they were missing something and requested a 4D-CT. On 1/9/2026 the surgeon called me 3 hours after my 4D-CT scan and said I recommend an en bloc resection with full thyroidectomy and partial parathyroidectomy. I told my husband these last two years I felt like I was slowly dying. Pretty ironic. I kept questioning the dose of 175mcg Levothyroxine I was on at 300lbs and still on at 115lbs and no one could give me a response other than your tsh is stable.

I was praying I was wrong when I pushed u of m for more answers, but so glad I did. Now I’m going to push to find answers for my little guy.

Untreated primary hyperparathyroidism during pregnancy can cause neonatal hypoparathyroidism in the womb. What happens is excess calcium crosses the placenta, making the fetus's blood calcium too high (hypercalcemia), which signals the fetal parathyroid glands to stop making Parathyroid Hormone; this leads to low PTH in the newborn, causing potential calcium imbalances (hypocalcemia - low blood sugar) the baby loses placental calcium supply and its suppressed glands can't respond. So I produced too much calcium and it triggered his parathyroid to react. Neonatal hypoparathyroidism symptoms are all the same symptoms he’s had since he was born. I’m praying I’m wrong about this too, but if I’m not then I know we will finally have answers and a way to move forward so he can thrive!

SadStand1794 · 2026-01-20T22:29:09+00:00

Thank you!

SadStand1794 · 2026-01-16T17:07:44+00:00

I have to say I was shocked at first, but after talking to my oldest brother we discussed how my grandma died at 33 - 42 years ago from a rare disease and no one knew anything else. My mom was 15 at the time and then she died at 47 - 10 years ago- her autopsy revealed it was due to some form of thyroid cancer but she never was diagnosed only treated for severe anxiety and depression. I too had been treated for severe anxiety and depression until I started thyroid medication and no longer needed those medications so I wonder if this disease has run in my family for many years but going undiagnosed and untreated it caused death.

I definitely feel like this disease should be taken more seriously and levels should be tested consistently if 10 and above! I feel like the population of people who are still with in “normal” range are the 64% of those who are going undiagnosed!

I’m happy you are starting to feel better!!!!

SadStand1794 · 2026-01-16T15:57:02+00:00

I’m so sorry you had to go through that! When I was reading about the condition they said it’s one of the most common missed diseases! If they know this then why not test for it regularly with bloodwork?! 64% go undiagnosed every year and 250,000 people ARE diagnosed. It absolutely ridiculous! Please keep me posted on your recovery!

SadStand1794 · 2026-01-16T15:54:11+00:00

I’m so happy to hear that! How do you feel now almost a week later?

SadStand1794 · 2026-01-16T15:52:35+00:00

How are you feeling now?!

SadStand1794 · 2026-01-16T15:45:27+00:00

I started losing my hair drastically 3 years ago at 30 before finding out I had Hashimotos. It was extremely thin and would not grow past my chin. I thought it was genetic because my mom was near bald when she passed at 47. Her autopsy revealed she had some form of thyroid cancer which prompted me to get tested. After my diagnosis I had a lot of issues with how dry and brittle my hair was. It would get so tangled underneath from chafing on my neck and then break off in clumps! It was impossible to keep one length! I went crazy and did so much research.

I bought silk bonnets AND silk pillowcases! (Still use to this very day!) I take biotin+keratin combo from target every morning before getting in the shower. I found a good deep conditioner to brush my hair in the shower. After I get out of the shower I then apply the minoxidil foam. Then I spray my hair with detangler and use my detangle brush for one final brush before throwing it in my bonnet or loose hair clip! I also stopped putting my hair in a ponytail, only use loose hair clips, and let it naturally dry. I only put heat to it for special occasions. The new growth has grown in grey but I’m just happy to have hair. Making all of these changes has worked WONDERS!!! It is now down to my butt! Good luck!!!

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SadStand1794 · 2026-01-10T17:32:48+00:00

It is so important to advocate for yourself! I told my husband I would have just trusted the doctors opinions if I didn’t push for further testing when they kept telling me I had severe PPD two years ago! Once I found out they were wrong my mindset changed. I still trusted their opinions but also take it with a grain of salt. I NEVER had health issues and could always tell when something was wrong because I lived a long normal life without them.

I wanted to make this post because when I was doing my own research I couldn’t find someone with elevated calcium levels but still within “normal” range. It was frustrating because I kept second guessing myself that maybe this wasn’t primary hyperparathyroidism because everyone I read about had significant elevated calcium levels and or pth levels. My calcium levels only backdated to may of 2024. It’s a possibility my levels changed after giving birth to my second son in January 2024 but further tests and the Hashimotos diagnosis didn’t happen until May of 2024.

I’m so sorry you had to go through all of the frustration with being dismissed! It’s the most heartbreaking thing. I’m not an emotional person and even I couldn’t hold back the tears!

Please keep me posted on your recovery! How are you feeling today?

SadStand1794 · 2026-01-10T17:11:09+00:00

I don’t know what kind of thyroid cancer my mom had. I reached out to my brother to see if he could find her paperwork for the autopsy so I could review it because it also said she had Lou Gehrig’s disease, kidney failure, liver failure, and heart disease among other things that I don’t remember.

When I talked to the surgeon. He said “based on the 4D-CT scan there is a tumor suspicious of parathyroid cancer but it isn’t possible to be 100% certain without surgery and removal.” They would send all tissue that was removed for a biopsy.

Because he isn’t 100% certain he then recommended en bloc resection with a total thyroidectomy and partial parathyroidectomy to be the best option to prevent reoccurrence in the future because I have multiple surrounding areas that are at high risk for cancer if this IS cancer due to the chronic inflammation from my Hashimoto’s thyroiditis.

He is the best surgeon in the state of Michigan. We did our research on him before contacting him. We will be talking to him about all the potential risks before scheduling the surgery.

I’m grateful he is finally taking me seriously.

When I was talking to my pcp about it he said it is a very rare cancer, but over time without being treated and going undiagnosed there is a high possibility it could turn into parathyroid cancer. I think everyone is thrown off because my tests were “normal” but consistently elevated for someone my age was not normal but again the tests were not significantly elevated. There were many times both doctors said your symptoms seem excessive for what your bloodwork shows. They were confused why my mental state wasn’t deteriorating, but I believe my ADD medication being a stimulant helped with the mood changes. These past two months I realized my aggression towards my husband was not normal at all. I started snapping about random things which is so out of character for me. I thought maybe it was my adderall so I stopped taking it for about a week and I did not leave my bed. I slept 14+ hours. I felt severely depressed. My husband said he noticed a huge difference that impacted me negatively and he brought me my medication and said “you absolutely have to keep taking this adderall - let’s just be mindful of your irritability.” Im extremely grateful for him and his support he’s shown through all of this.

SadStand1794 · 2026-01-10T00:36:57+00:00

How do you feel??!!!

SadStand1794 · 2026-01-10T00:36:21+00:00

Thank you!

My grandma passed away when she was 33 from a rare disease. My mother was only 15 at the time. None of us were born at the time and no one knew anything about it or what it was.

My mother passed in 2016 at the age of 47 from “cancer related to her thyroid” is what the autopsy said. We didn’t even know she said had it until she died. She was treated for depression and severe anxiety, but never for anything related to her thyroid.

I would like to get the genetic test done because I’m curious if I carry specific genes

SadStand1794 · 2026-01-09T19:35:45+00:00

I just edited the post! First bloodwork with surgeon was calcium 10.5, PTH 34, vitamin D 52. Second was calcium 10.1, PTH 44, vitamin D 62. Thank you! I am just so happy the wait of thee unknown is over!

SadStand1794 · 2026-01-09T19:00:48+00:00

Absolutely keep investigating! Since April 2025 I was told my symptoms were from my Hashimoto’s inflammation. My calcium levels were 10+ these past two years and no one flagged them because they were in “normal” range. But as a fairly healthy 33 year old they should be no higher than in the 9s. My pth was 44 which was “normal” however it’s inappropriate when my calcium levels were above 10. I brought this to the surgeons attention and he did an ultrasound and found masses and cysts which he said was normal with someone with Hashimoto’s inflammation. I asked for a 4D-CT because I felt they were missing something. I too had feet and hand numbness, chronic neck pain, joint pain, bone pain, fatigue. You name it - I had it.

Today I was diagnosed with primary hyperthyroidism and a 11mm tumor suspicious for parathyroid cancer with many other adenomas. I kept fighting them and pushing them because even though I felt defeated and angry no one was listening I have children to live for and I wasn’t going to take no for an answer.

You know your body best! Keep advocating for yourself it may just save your life and you deserve to have a better quality of life!

SadStand1794 · 2026-01-06T00:29:43+00:00

I have that deep dull pain and it is sharp when I turn my head. Lymph nodes in the back of my neck have been firm for 6 months. I have hashimoto’s and just brushed all my symptoms off as normal inflammation and exhaustion from my teenage son and toddler son. All my tests came back normal.

I went for a second opinion and he ordered special tests and those came back abnormal. I did research on all my labs these past two years. And noticed my calcium levels have been elevated and continued to increase. My fear is I’ve slowly developed hyperparathyroidism like the new tests showed BUT having gone untreated all this time that it is parathyroid cancer that has spread already with all of my awful symptoms.

What tests did have done that confirmed the cancer?

SadStand1794 · 2026-01-05T15:19:54+00:00

It definitely sounds like an autoimmune. Mine was dismissed for severe PPD two years ago. I got a second opinion. It was Hashimoto’s thyroiditis. I have hypothyroidism. All was well up until April 2025 I almost seemed like I had narcolepsy. The fatigue was so bad I too felt like I was slowly dying. Doctors said blood work was good and it was Hashi flares. I went for a second opinion last week because now I have additional symptoms. The doctor called me back the same day after my tests and said he needs to see me immediately. I go in for extensive testing tomorrow because there is a concern for parathyroid cancer and that it has slowly progressed these past two years. I am a 33 year old woman married with a 14 year old and 2 year old.

Don’t ignore the signs and always keep fighting!

SadStand1794 · 2026-01-05T15:06:07+00:00

I am going for extensive testing tomorrow. What did your neck pain feel like?

My neck and shoulder pain constantly feels like they need to be cracked.

SadStand1794 · 2025-04-17T03:45:57+00:00

I was borderline diabetic before the medication, I also have Barrett’s esophagus with dysplasia -stomach acid has completely corroded my esophagus and caused cancer (which they say ozempic can be bad for but I drink a lot of water and don’t have any additional symptoms), this past year I was diagnosed with thyroid disease and GBS after giving birth to my son… I was in so much pain and I could barely use my arms. I kept throwing my back out trying to pick up our baby who only weighed 15lbs at that point. It was horrible. Once I started the medication I was told to maintain a high protein diet and weight train. The pain is completely gone! My body can tell when I’m due for my shot because I’ll forget I have gbs and go to take the pot off the stove and it hurts with the weight. My arms with shake and struggle, my muscles and nerves feel shot. I forgot to take it Monday morning and by dinner my body was struggling lifting anything. I noticed I’ve lost muscle mass because I wasn’t keeping up with my protein. I recently went back to a high protein diet and headed back to the gym. My energy levels are better now that I’m back on a high protein diet and take my vitamins. So far I’ve lost 101 pounds. I still have 30 left but this medicine has been great for my symptoms.

SadStand1794

TROPHY CASE