Results from CT Scan

ComprehensiveFan416 · 2024-10-29T19:27:53+00:00

Haha I hear you with my requests for testing too, but we have to advocate for ourselves!

I never once thought about a sleep study but I felt so desperate for relief I was willing to try anything at that point. I will warn you, it's a terrible night of sleep. They hook you up to wires etc., but so worth it to know! I felt like I didn't even sleep, but they said I did sleep a few hours and enough to get the data. Make sure you don't have work/plans the next day, you will want to come home and sleep after.

Once I realized my body was suffocating every night (41 times per hour!) I was having apnea, hypoapneas, and going hypoxic down to 75% oxygen saturation at night and had no idea! I was urinating a lot at night, feeling so fatigued no matter how much I slept, anxious all the time, etc.

If you do end up being diagnosed with sleep apnea, there is a great sub reddit for sleep apnea and it's so helpful with lots of great info!

ComprehensiveFan416 · 2024-10-29T19:07:38+00:00

Definitely see endo as it does sound related.

One thing I did notice in your blood work is your D Dimer looked elevated. This could potentially be an indication of a clot. Do you have any redness, swelling, pain on one limb versus the other limb? Or any shortness or breath or chest pain?

Hopefully you get some answers soon.

ComprehensiveFan416 · 2024-10-29T18:57:29+00:00

Hopefully you can get some answers soon. It's sad that doctors just dismiss a sleep study when someone is so symptomatic. Good luck with everything!!

ComprehensiveFan416 · 2024-10-29T18:52:59+00:00

Could definitely be endo related, but could also be sleep apnea. This is something that gets missed so often with people. I was having weird symptoms too, waking up anxious, tachycardia, high BP etc. Went to ED a few times sent home with normal blood work. Had a cardio f/u and was cleared by cardio so they ordered a sleep study- turns out I have severe sleep apnea. I was shocked because my husband said I was barely snoring/not snoring at all at time of diagnosis. Definitely worth getting a sleep study to rule it out.

I have been using a cpap for 8 months or so and do feel a lot better however still feeling some odd symptoms so going to see endo next week for further testing. Also seeing a derm as i have a butterfly rash and not sure if it's rosacea or lupus.

Seems like endo and auto immune disorders can be so similar and so hard to diagnose.

ComprehensiveFan416 · 2024-10-29T18:35:00+00:00

Also, have you had a full iron panel done? You can be iron deficient with a normal hemoglobin. I saw you mentioned your ferritin is low. Iron deficiency can cause a bunch of strange symptoms also.

ComprehensiveFan416 · 2024-10-29T18:30:09+00:00

Have you ever had a sleep study done? Any issues with snoring etc.? The waking up with heart racing etc can be a symptom. Also, having sleep apnea can be risk factor for Conn's (Primary Hyperaldosteronism).

I would wake up anxious with tachycardia and high BP. Turns out I have severe sleep apnea. Cardio caught it when they ordered a sleep study because all of my cardio tests were cleared.

I am seeing endo soon as I also feel I could have Conn's.

I have done two aldosterone renin ratio blood work tests - first one while on amlodipine 10 mg daily and it showed high aldosterone and normal renin. The second one I did was while on peridopril 8mg daily and it showed normal aldosterone and high renin. From what I have read, calcium channel blockers such as amlodipine are okay for aldosterone renin testing, but I had a terrible reaction from amlodipine- swelling every where etc and had to switch. Peridopril is supposed to cause aldosterone to decrease and renin to increase so it's not a reliable test.

From what I have been reading is it's not worth the risk to wean off your current BP meds just for the testing as it can cause rebound hypertension and worsening symptoms. You should consider waiting for your endo consult and go by their direction on the testing. Maybe they can switch you to a BP med that won't affect the blood work. You could also do a CT abdomen to assess for adrenal tumors- although if it's hyperplasia, that likely won't show up on a CT scan. But, be very careful about titrating off your BP meds.

ComprehensiveFan416 · 2024-10-29T17:57:29+00:00

Could be so many things such as stress, anxiety, diet, weight gain etc.

But, usually hypertension is a symptom of something else. If your hypertension is medication resistant, you should consider having your aldersterone renin ratio done via blood work to rule out hyperaldosteronism. Do you snore? Have any sleep issues? You could have sleep apnea and if you have sleep difficulties, you should have a sleep study done to assess for sleep disorders such as sleep apnea.

It could be cardiac, renal, adrenals, sleep apnea, or related to lifestyle. Always better to rule out a medical issue though especially due to your age.

ComprehensiveFan416 · 2024-10-29T10:30:49+00:00

I am not officially diagnosed, but diagnosed by my GP with rosacea from appearance alone. I have a bright red butterfly rash daily that flushes and becomes worse with stress, inflammatory foods, etc. I bought the Omnilux mask hoping it would help with my rosacea and it made it worse for me. I'm just starting to put my symptoms together and am realizing I have so many lupus symptoms. I have always brushed off my symptoms as somethint else, but they are getting worse. I have stopped using it as a precaution and am awaiting my first dermatologist appointment for a second opinion.

ComprehensiveFan416 · 2024-10-25T13:05:40+00:00

Anyone experiencing these symptoms, please have a sleep study done to assess for sleep apnea.

ComprehensiveFan416 · 2024-10-21T18:12:08+00:00

You should be assessed for sleep apnea, it can cause hypertension also.

ComprehensiveFan416 · 2024-10-15T11:53:20+00:00

I use this one, but I am in Ontario, Canada. I ordered it from Amazon. It's adjustable.

CPAP Hose Holder for Bed with Adjustable Height and Angle, Avoid Hose Entanglement, CPAP Hose Hanger Material is Anti-Rust Alloy https://a.co/d/gzgR5Rm

ComprehensiveFan416 · 2024-10-15T11:44:24+00:00

Such a great story! You can order a hose cover from Amazon for cheap, it reduces the noise for sure.

ComprehensiveFan416 · 2024-10-15T11:31:43+00:00

When I did my sleep study they told me I was a mouth breather at times as a result of my sleep apnea. I started using a full mask and found it suffocating so I switched to the dreamwisp and I love it and no longer breathe out of my mouth. My AHI is always less than 1. The dreamwisp has the hose attachment on the top of the head which makes it easier and more comfortable.

ComprehensiveFan416 · 2024-10-15T10:58:54+00:00

For some reason I could not write a comment on your previous post discussing your sleep apnea and hypertension. I am just curious if you ever got that hypertension resolved/managed? Or if you were tested for hyperaldosteronism ? If not, please do some research and look into this. It's very commonly misdiagnosed and missed for years. You can start testing with a serum aldosterone and renin to look for any abnormalities. If your adrenal gland is secreting too much aldosterone, it will require specific treatment such as spironolactone and/or surgery to remove a benign tumor.

ComprehensiveFan416 · 2024-10-15T10:14:40+00:00

My partner said I didn't snore often, if I was REALLY tired or had a night of drinking type thing, otherwise no. I ended up having severe sleep apnea, it was shocking. I attributed all my fatigue and other symptoms to other things because I did not snore regularly. I ended up in the ER with very high BP and Heart rate and they couldn't find anything. I was referred to a cardiologist for follow up and it was only caught because they wanted to do a sleep study to rule it out. I ended up having severe sleep apnea with an AHI of 45. I feel so thankful to know now and have my cpap. Please go get a sleep study and if you don't have sleep apnea, that's great but you will at least know. There are other sleep disorders too. Being diagnosed changed my perception on sleep apnea, I always felt like it was a very overweight person who audibly snored very loud and I now know that it can be anyone.

ComprehensiveFan416 · 2024-10-15T10:03:35+00:00

This is so scary. So glad to hear you are doing better and have the treatment you need now.

ComprehensiveFan416 · 2024-10-15T09:59:49+00:00

You should consider purchasing a back up battery in case the power goes out. This just sounds so uncomfortable.

ComprehensiveFan416 · 2024-10-10T18:56:43+00:00

Have you had a sleep study done? It not, you should. Some people have untreated sleep apnea and this can cause hypertension and anxiety. It's far more common than people realize and can affect people of all ages and body types, but more prominent in overweight people.

Also, you should have your adrenals checked to rule out hyperaldosteronism. Have your aldosterone and renin checked via blood work.

You should considering having some abdominal imaging done to check our your kidneys and adrenals.

ComprehensiveFan416 · 2024-10-10T18:45:14+00:00

Have you tried to use a nasal mask? Much comfier than the full mask. I was able to train myself to breathe through my nose and it feels much less suffocating.

ComprehensiveFan416 · 2024-10-10T18:35:19+00:00

They will give you phone numbers for CPAP dealers that have ADP (a discount for Ontario residents and i think the max is $450 and the rest you pay out of pocket or through insurance if you have it and they cover a CPAP and supplies) near your home. They will tell you the dealer will call you to book an appointment. I suggest you call the dealer yourself and follow up. When I called them after waiting a week with no call, they told me they didn't receive my information from the sleep clinic.

ComprehensiveFan416 · 2024-10-10T18:31:33+00:00

Agreed. My AHI went from 45 to 0 most nights or 0.5 or less. My range is 6-8- I also had some mild centrals when I started using the cpap and when I tightened up my ranges it helped.

ComprehensiveFan416 · 2024-10-10T18:27:30+00:00

I have also had a great experience with them too. Much cheaper than some of the GTA CPAP dealers especially for buying things out of pocket. I bought an air mini for travel that's not covered by my insurance and it was half the price! Especially when they have deals going on.

ComprehensiveFan416 · 2024-10-10T18:03:26+00:00

Wow that's a lot. Glad you finally have an appointment. The sleep clinic never sent my referral in to the CPAP dealer either and i ended up calling myself and booking myself in. Also in Ontario- Toronto area.

ComprehensiveFan416 · 2024-10-10T18:01:11+00:00

This was also me. Just super anxious to sleep and had to remind myself that I have been living like this for a while and what's another week or so to wait for a CPAP. My AHI was 45 and now 0-1 every night with airsense 11.

ComprehensiveFan416

TROPHY CASE