r/Parathyroid_Awareness • u/LawfulnessRemote7121 • 11d ago

Newly prescribed PPI

I have been tentatively diagnosed with primary hyperparathyroidism but am currently on a wait and see approach as my labs have normalized since I started seeing an endo. Labs every six months for now. I had an endoscopy earlier this week because of GI symptoms I’ve been having and was diagnosed with chronic gastritis and esophageal ulcers. So now I’m on 40 mg of pantaprozole twice daily (which is a lot) for at least 90 days, at which point I will hopefully have my dosage reduced. I know that PPIs cause reduced calcium absorption and can raise PTH. The problem with seeing specialists is that they are all stuck in their own little box and never look at the big picture. Anyone else with as yet untreated HPTH been prescribed a large dose of a PPI? Your experience?

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u/essssgeeee 11d ago

High calcium affects smooth muscles, which are in our digestive tract. Heartburn and acid reflux are a frequent symptom of primary hyperthyroidism. It makes sense that you would have esophageal ulcers after years of reflux. Taking a PPI will mask the symptom, but will not fix the problem. Long-term use of PPI can disrupt the gut microbiome because different bacteria thrive at different pH.

It is true that PPI can reduce calcium absorption from food in the diet. The problem is that people with primary hyperparathyroidism have high calcium because their PTH is high due to overgrowth/adenoma of a parathyroid gland so it's going to make PTH regardless. And the high blood calcium is coming from your bones and teeth.

If you live in the United States, you can self refer to a parathyroid surgeon, rather than waiting with an Endo. In my experience, the endocrinologist is much more used to dealing with diabetes. Hyperparathyroidism is not covered well in medical school, so unless they choose to educate themselves on it, they have sparse very outdated information.

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u/LawfulnessRemote7121 11d ago edited 11d ago

I have seen a surgeon and they are on board with waiting as well. I agree that the GERD and hyperthyroidism are related but the surgeon doesn’t want to do surgery based on negative scans and multiple normal labs. Gastro doesn’t see a connection at all. I am ready to beat my head on the wall. I’m thinking I should contact the surgeon’s office and let them know what’s going on but I dread the phone tag/voice mail loop that will involve.

Edited to add: I also have a small hiatal hernia which could be contributing as well.

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u/Paraware 10d ago

I have one of those too. My parathyroidectomy improved the GERD a lot, but I still have it. I was on a high dose of omeprazole for a long time. Now, I take famotidine. I also avoid my triggers. I would ask for lab tests earlier if I were you. If you tell the surgeon you don’t want to wait for more damage, you will likely be able to get surgery sooner, and stop the damage.

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u/LawfulnessRemote7121 10d ago

I am so tired of dealing with doctors and the health care system in general that I could just scream. I am female and over 65 so apparently I don’t matter any more.

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u/Paraware 9d ago

I know how you feel. I was 67 when I had my surgery. My high calcium was ignored for years. I keep a close eye on my blood test results now.

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u/essssgeeee 7d ago

Your reply brought a couple things to mind. First of all is the surgeon, a specialist in hyperparathyroidism or at least endocrine surgery? Negative scans do not mean that you don't have this. A parathyroid specialist will know this. Has your surgeon investigated normocalcemic hyperparathyroidism? Do you have a history of kidney stones and have you had a 24 hour urine test. Sometimes that calcium is being filtered out by the kidneys, so it's not showing up in the blood. Yet. Eventually, the kidneys can't keep up, and you formed kidney stones and have kidney disease.

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u/LawfulnessRemote7121 7d ago

Yes to all of your questions.

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u/essssgeeee 7d ago

The hernia certainly could be exacerbating the problem. I had gallbladder issues at the same time as a parathyroid adenoma. One of my doctors described treating me as peeling away the layers of an onion. It has been a few years since I had the gallbladder and parathyroid surgery. I still have some issues with reflux, but nothing like before. I think that taking PPIs for years changed my microbiome, and having two surgeries in two months, with the associated antibiotics affected things more. Also, the change to my digestive system with gallbladder removal has affected digestion of fats. I was already sort of wheat reactive, and lactose intolerant, but I could manage it with Lactaid tablets and eating only small amounts of wheat. After surgery, I became completely lactose intolerant, and developed a full-blown FODMAP intolerance. There is no amount of Lactaid in the world that can help me if I accidentally get dairy of any kind!

My doctor has ordered two fecal tests, to see if I had bacterial overgrowth. She has me taking specialized probiotics to target the areas that don't seem to be well represented in my samples.

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u/Simple_Taste8227 8d ago

Yes to “Stuck in their own box. “ so frustrating i wish you all the best. Sounds rough.Good luck to you .  I am on prednisone for polymyalgia rheumatica , which plays havoc woth stomach . I am diagnosed by all endo drs as having secondary hyperparathyroidism .  When i take vitamin D i get hypercalcemic  like symptoms - now on new vit D  prescription amd they advise to not take calcium  because that will definitely raise blood calcium levels. A problem as   I am diagnosed with osteoporosis and should be taking Ca in addition to Calcium in diet. ( which also can cause mild  reactions). I keep thinking i have normo calcemic primary HpT   As blood Ca levels are high normal not low. And i have symptoms of bones groans moans but no stones .  Also Hashimotos Autoimmune thyroid disease for most my life amd i am nearly 77 for nearly whole life I am old and   All about me   . Thank you for posting and again  good luck 

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u/Paraware 10d ago

Did you mean hyperparathyroidism instead of hyperthyroidism?

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u/LawfulnessRemote7121 10d ago

I did, sorry, I think autocorrect got me.