Cannot Regulate Body Temperature

Could be a histamine reaction? Also, could be thyroid. Thyroid tests just do the minimum. We need the thorough test to know for sure. Might need a rheumatologist. High blood sugar can cause high blood pressure.

I have had all the thyroid panels. I’m slightly hypothyroid, which doesn’t really fit with the heat. I don’t have nor have never had high blood sugar. I believe it is some underlying condition causing dysautonomia. But nobody has any good ideas what that might be. The more frustrating aspect is I haven’t felt like any specialist I’ve seen is particularly interested in doing the digging required to answer this. I have zero quality of life at this point and I don’t see any help with this on the horizon. My daughter deserves a mom.

@ladybarlow
What specialists have you seen and what testing has been done?

Have you seen an endocrinologist to check hormones and thyroid?

Have you been to a cardiologist for stress testing?

Did you have Covid and the injections?

Have you been to a neurologist to be tested for small fiber neuropathy? You may need neuropathy bloodwork to check glucose and vitamin deficiencies/toxicities.

Are you a vegan or vegetarian? Do you take any medication or supplements? Do you have heavy menstrual cycles and have you had your iron checked with a full panel (not just CBC)?

I started with my GP. He did some chest and abdominal scans to look for any mass or lesions. Then to infectious disease specialist who worked me up for Lyme, and every other pathogen one can imagine. Gyn did menopause testing and put me on HRT but said she felt this is rheumatological. Had all the thyroid panels done. Went to Cleveland and saw rheumatology and Neurolgy. Neuro explained why they didn’t feel it fits a small fiber neuropathy. Rheumatology did additional labs and some
Other testing. Followed up with using virtual for almost a year. That doctor gave me his best guess diagnosis, Sjorgrens Syndrome. He had me follow up with a colleague who did a few more blood tests and said she didn’t think it is Sjorgrens. In fairness, I thought it might be because I have many of the symptoms. Dry eye, dry mouth. Dry skin, etc. I just saw an endocrinologist who ordered labs. A few of them came back abnormal but not all. And he had warned me that taking Tylenol before testing might cause a low false positive. I can’t avoid Tylenol due to chronic pain and it being in my
Pain med.

@ladybarlow Welcome to Mayo Clinic Connect! As you can see, the members really want to give you some help. I’m glad you’ve gotten involved so soon!

I’m sure that you must have been checked for carcinoid and pheochromocytoma. Did they take a history to check for autonomic dysfunction. Do you have a file of your test result since it is so complex.?

Hugs to you @ladybarlow. It’s scary. I’ve read about 40% of Sjogren’s patients do not test positive for the disease and I am one of those patients. I cannot control my body temperature, don’t sweat, and spontaneous flare ups are scary. After medical tests for other possibilities my diagnosis is dysautonomia.
This is life changing. I am no longer active. 🥲When I start to feel a flare it’s important I immediately stop what I’m doing (this step is hard for me) and start self maintenance… what helps me is to be somewhere cool with a blasting fan (I live in South Texas), drink cold water, use cold compresses (I keep disposable ice packs in the car), take off my clothes and STAY CALM.

What would help alleviate your symptoms? One size does not fit all.
Keep searching for your diagnosis, you’ve had lots of set backs!

Autoimmune patients have similar stories. After five years of feeling brushed off by doctors having 5 minutes to talk about my bizarre symptoms and getting no where I invested in a concierge doctor. He organized a plan and a group of specialists, and I was diagnosed within a month. This brought down my stress level significantly.
I may add a Functional MD specializing autoimmune as another resource.

Best wishes for continued strength during your journey while raising a teenage daughter.💖 I hope you find a doctor you trust who will guide you to the answers you are looking for.

I went through a similar experience. I have finally been diagnosed with Erythromelalgia and Dysautonomia. In the process of my diagnosis, the doctors found two heart problems and breast cancer. Keep searching for answers. Takee pictures. Document symptoms. Keep pressing doctors for answers. I have seen many doctors at Cleveland Clinic. Some were dismissive, but some really helped me find the answers I needed.

I'm sure by now that you have heard that your temp. is regulated by the automatic nervous system. I have a similar problem with my balance also caused by autonomic nervous system. My was started by Sjogren's which an autoimmune disease. A specialist to start with would be a rheumatologist that knows about Sjogren's (they don't all). The only treatment for Sjogren's at this time ( there are drugs in the works) is IvIg. I hope this has given you a new place to look. Hang in there. We care!

Kudos to you from a fellow South Texan who is also a Sjogren's sufferer. Wow! What you have to deal with! Just shows how strong we humans can really be. Hats off!