I’m writing to see if anyone has any experience with a high resting heart rate, and what might cause it. I’ve had a high resting heart rate for at least 20 years now, and my endo and I are looking for potential causes for it. We are looking at rare(ish) genetic disorders at the moment.
I’ve had a lot of ECGs over the years and done Holter monitoring three times in the past 20 years. I’ve also had an ultrasound scan of my heart, to see if the valves are working properly. The diagnosis was just “sinus tachycardia.”
I’ve recently developed hypertension (grade 1) even though I’m young (34) and have a BMI of 21. My thyroid hormones are normal.
I was diagnosed with type 1 diabetes at age 14, and I already back then had a high resting heart rate. We did BP and pulse tests in biology in school back then multiple times as a part of different assignments, and I was always the one with the highest pulse and BP.
I’ve had heart palpitations and coughing because of that on occasion throughout my life as well, and my pulse increases a lot during exercise, so much so that it becomes difficult to exercise sometimes.
I’m from an ethnic group (Faroese) that has a high rate of different genetic disorders that are rare or incredibly rare in most other ethnic groups, due to the Founder Effect.
We have tested for Systemic Primary Carnitine Deficiency, which was negative, and are currently testing for different types of Ehler-Danlos Syndrome (I’m very flexible) and Glycogen Storage Disease Type V (McArdle’s Disease).
My mom told me that my childhood doctor said I was rather “floppy” as a baby, and later on when I was maybe 4 or 5 years old, she told me and my mom that we should go hiking more, to strengthen my joints, because I was still too “floppy.”
Anyway, any clues to where to look next would be much appreciated. Either other autoimmune disorders or genetic disorders that could cause my symptoms.
Do you have other symptoms that go along with it, maybe even innocuous ones you didn’t take much notice of? Allergies, such as itchy/watery eyes, skin irritation, runny nose, etc… Heart burn/indigestion? General fatigue/malaise? Food sensitivities, maybe even confusing ones that seem inconsistent? Inflammation, pain, headaches? GI distress? If you can say yes to any of that, you might want to look into Mast Cell Activation Syndrome (MCAS), for which high resting heart rate, autoimmune disease, and coughing are also symptoms.
The simplest explanation I can provide is that mast cells are part of our immune system. They snap into action to protect us from infection and allergens. But when they’re not turning off again appropriately, the body starts going haywire in seemingly unrelated ways. To give an idea, heartburn medications are antihistamines, similar to seasonal allergy medicines. But without a deep understanding of human biology, who would ever link indigestion and watery eyes as being related???
It’s a rabbit hole we’ve been going down in my own household. It’s one of the hardest things to get an actual diagnosis for, though, because it affects so many aspects of the body and symptoms/triggers are constantly changing. And there are environmental factors beyond our control that make the symptoms even more confusing. They can pull up randomly, making them hard to connect. There are a few blood tests than can be done, but they’re not definitive. It’s not even something many doctors are familiar with yet, but there’s a wealth of new research being done on it since Covid. It’s believed that MCAS is responsive for long Covid symptoms, autoimmune disorders, and even those weird “phantom” illnesses that are barely recognized by medical professionals like chronic fatigue and fibromyalgia. We’ve also seen an increase in T1 diagnoses post-covid, so I have a feeling that the research will soon highlight this mast cell activation as the mysterious trigger for T1 we’ve heard about for decades.
The coughing was a big one for me personally. I even had my lungs biopsied because nobody could figure it out. Now I understand that mast cells are highly concentrated in the airways.
It sounds like you are thin and flexible. High blood pressure, some heart arrhythmia. Are you also relatively tall? Long arms, legs, fingers or toes?
This set of characteristics is certainly not unusual, but it may be worth considering Marfan syndrome if that has not already been ruled out. It occurs in about 1/5000 to 10,000 people, so not as rare as many other genetic conditions, and it varies widely in severity, so not always diagnosed while young. Also Loeys-Dietz though not as common. There are genetic tests for both.
My husband has always had a resting BP rate of over 100. He found it hard to donate blood in his 30’s when a friend needed blood for a surgery because they wanted it under 100 to let him donate. But he’s had it ever since he can remember at least since childhood. The doctors pretty much ignore it. He does have type 2, although it’s been controlled, and he didn’t develop that until about 8 years ago and he is 70 now. He has nothing else wrong with him, takes no medication except metformin and gets a clean bill of health at his check ups. I don’t think we’ve ever checked his pulse during exercise, but he doesn’t seem to have a problem with it. He swims ocean laps every day and goes swimming with me for hours at a time.
In his case it’s just simply seems to be something he has with no link, or at least obvious link to anything else.
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Wow, thanks! I’ve never heard of that before, and many things do sound familiar to what I’m experiencing. I’ll definitely do more reading into that.
I’ve had treatment resistant migraines and headaches since I was diagnosed with diabetes at age 14. I had maybe one or two migraine episodes a year before I was diagnosed with diabetes, but they became incredibly frequent afterwards. I’m treated at the neurological department of the same hospital where I’m treated for diabetes.
I’ve also had stomach issues for ages now, and was checked for gastroparesis in 2019, because I would vomit a lot; sometimes yesterday’s food up, and have severe heartburn. The tests were inconclusive, but the gastroenterologist said in mild gastroparesis, it can be difficult to get a conclusive result. I was prescribed Metoclopramide to deal with the vomiting and nausea, and was told to ask my endo to refer me back to him if things get worse. I don’t vomit as much anymore, maybe once every two months, but I still have issues with heartburn.
I’ve had issues with sudden sweating as well, even with minor activity, especially on my face and chest. Gustatory hyperhidrosis was ruled out.
I’m almost always tired as well. I need to sleep 9 hours a day as a minimum, but I prefer 10 hours to be able to function properly and not need to nap during the day. However, my mom said I’ve always been a sleepy baby/kid, as opposed to my brother who wouldn’t sleep at all when he was a baby.
I don’t have any allergies I know about, but I did develop eczema out of the blue about a year ago on both my elbows and left ear.
And I’ve had issues with red, swollen and watery eyes for the last two weeks. I just thought it was a cold or something, but it’s definitely something I’ll be writing down.
I am pretty tall (189 cm/6’2"), only slightly taller than my father. I don’t have particularly long fingers, toes or limbs. I would say they are pretty proportional for my size. My shoe size is also rather small for my body size - it’s around 43 to 44 European size which I think is a 10.5 men’s size in the US.
But I will also add Marfan syndrome to the list that I’m compiling for my endo to look through. Thank you.
My endo also said it “could just be one of those things” that doesn’t really have an explanation other than being a “quirk” of my body. It was the hypertension she was more worried about because of my young age, which is why she wanted to explore other things. She hasn’t prescribed any hypertensive medication yet, because she wants me to test my BP and pulse 2 days a week at home (morning and night) for two months, when we will have our next appointment. If my BP keeps being high (which I can see it is), she will probably prescribe me anti-hypertensive medications.
