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Hyperparathyroidism?

I have had these symptoms since 2006 and they have just gotten worse, doctors are basically telling me it is all in my head and I need to see a psychiatrist.  I do have an appointment with an endocrinologist mid October.  In 2014 my sister had Primary Hyperparathyroidism Multi Glandular disease involving 3 out of 4 of her Parathyroid glands, two of her Parathryroid Glands were in her chest the other other two were in weird places in her neck.  I have been diagnosed with chronic fatigue, I am dead tired all the time, major heat and cold intolerance, moderate to severe pain in my left hip, other bone and muscle pain legs, hands, constant headache, tendonitis in my right hand, dizzy and light headed, Insomnia, dry mouth and I constantly feel dehydrated, anxiety, vomiting, diarrhea, extreme brain fog, my lungs feel heavy a lot, I have extreme difficulty dealing with stress, PTSD from severe childhood trauma, I have a really weird itch deep in my jaw just in front of my ear lobes which I rub and rub and can't get to.  
My blood pressure is all over the place, my calcium since 2006 has been running 10.4-10.8
My Chloride has been running 107-114 since 2006
My PTH intact has been running 41-66
I have been diagnosed with the following:

After my Colonoscopy 12/28/2011:
Chronic Gastroesophageal reflux disease GERD 12/28/2011
Diarrhea not explained by findings 12/28/2011
Right colon polyp 12/28/2011
Diverticulosis 12/28/2011
Biopsied for Colitis Negative
No Celiac found

Menometrorrhagia since age 18

Chronic Fatigue 8/7/2006
Dry Mouth/Dehydration 8/7/2006
Heat Intolerance 8/7/2006
Gall Bladder removed 5/22/2009
Open abdominal Hysterectomy due to endometriosis and severe bleeding 12/16/2009
Diverticulitis and additional polyps 2020
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Avatar universal
Sorry my Right hip not my left, see very bad brain fog!
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Avatar universal
That's a lot going on.  Without a gallbladder you could be having trouble digesting fat.  It makes your liver work harder.  It could affect your pancreas.  If you truly have PTSD, you need therapy for that.  But again, it's a lot of stuff, and you've seen a lot of docs, but you've also had a lot go wrong and had a lot of invasive medicine performed for it, maybe necessary, and maybe not.  Some of that medicine might have harmed you.  It might have saved you.  You need to keep trying to find the medical problems, but you also do need to also work on the mental stuff, but you do seem to have something going on physiologically that caused all that other stuff to go wrong in the first place.  Maybe you need much better doctors.
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1 Comments
I have been seeing a therapist for the PTSD, I was diagnosed with PTSD by two different doctors, it was not a one time thing, it was an almost daily occurance from as young as I can remember (most likely four because I have been told I stopped talking for a year when I was four until about the age of 9).  I finally have an appointment with an endocrinologist in 3 weeks.
649848 tn?1534633700
COMMUNITY LEADER
What are your calcium levels?  Calcium is measured with a metabolic panel.  

Have you ever had your thyroid hormone levels tested?  Some of your symptoms sound a lot like a thyroid malfunction, such as heat intolerance, GERD, fatigue, tendonitis, muscle aches/pain, brain fog, diarrhea... Some of the symptoms are seen most with hyperthyroidism, some most with hypothyroidism.  Although your PTSD can account for your anxiety, anxiety is also seen often with thyroid disorder.  Therapy, which you're already doing is always one of the best ways to deal with anxiety, but if it's related to thyroid malfunction, you'll also need to normalize thyroid hormone levels.

The tests you need to get for thyroid function are Free T4, Free T3 and TSH.  It might also be beneficial to test thyroid antibodies to determine if you have an autoimmune condition.   Thyroid Simulating Immunoglobin is the definitive test to diagnose Graves Disease, which is always associated with hyperthyroidism.  Thyroid Perxoidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb) are the tests to determine if you have Hashimoto's, which is most often associated with hypothyroidism, but can often present with hyperthyroidism in the early stages.   A thyroid ultrasound can determine if you have thyroid nodules and will sometimes determine if you parathyroids are located in approximately, the normal position, which is, typically, at the 4 corners of the thyroid.  

For excellent information (and lots of reading) regarding parathyroid function you can go to www.parathyroid.com.  It will tell you almost everything you need to know about parathyroid.  
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3 Comments
My calcium levels have been between 10.5 and 10.8 since 2006.  They have checked my  Thyroid and parathyroid checked several times TSH comes back normal, PTH has been normal except my most recent my PTH was 66.  My sister had hyperparathyroidism her calcium was 11 and she had 3 of them removed.  Anything over 70 for me is excruciating and my vision starts to tunnel.  My Chloride has also been high since 2006 so from what I’m reading the heat issue may be linked to electrolyte imbalance.  I have been reading on Parathyroid.com and everything points to Hyperparathyroidism.  I finally have an appointment with an endocrinologist Oct 23.
My sisters Parathyroids were not in the normal location two were in her chest the other 2 way up in her neck.
Oh - I'm not saying you don't have hyperparathyroidism... I'm simply saying there could be more than one thing going on.  Because the thyroid controls so many body processes (metabolism, body temperature, heart rate, etc), everything thyroid needs to be checked out.  If the only thyroid related test they did was TSH, they fell far short.  TSH is a pituitary hormone, not a thyroid hormone and isn't always indicative of actual thyroid hormone status.   They need to also test the Free T4 and Free T3.  There's an "optimal" range for each of us - not just the so-called normal ranges which are much too broad.  

Have you had an ultrasound to determine if your parathyroids are in the usual location?  

Good luck with the endo on the 23rd.  Most of us find that endos can be particularly, useless because they tend to refuse to think "outside the box"...
Avatar universal
Update:  I had my first parathyroidectomy on 7/2/2021 my Calcium went right back up day 3 post op and never went back down.  My ednocrinologist left his practice so the search was on for a new one.  Talk about jumping through hoops!  I had an Endocrinology office who made me jump through hoops for 3 months then told me I did not have PHPT, that there was nothing wrong with me.  I immediately contacted my surgeon's office who had me go for labs which shows PHPT.  I finally found another Endocrinologist who ran a whole list of tests, and I was sent for my second Parathyroidectomy, I also had a zoom consult with Dr. Larian who stated I needed another surgery.  I had my second Parathyroidectomy on 3/20/2023 leaving only one healthy looking parathyroid.  My calcium went up again day 3 post surgery.  After my surgeon was done pulling his hair out trying to figure things out, he decided to have my CaSR gene tested.  My CaSR gene came back with a variant of Unknown Signifigance and that variant is extremely rare, the few cases where it has been reported, it has been in in people with Primary Hyperparathryoidism.  I then ordered full genetic testing on myself and am waiting on those results hoping the results will give me an explanation of why my thyroid is like a rock and why it is shrinking as all my thyroid labs are normal.  Thank you to all who have responded to me.
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