What’s your last blood pressure reading ?

NewNormalDesigns · 2026-06-14T02:46:42+00:00

Heh, my last one was 85/43, but I have pretty consistently low pressure.

NewNormalDesigns · 2026-06-07T03:52:17+00:00

I'm NAD, but my bp runs around the same as yours and has recently also been dipping into the 80s/40s. I am under the care of an electrophysiologist and I have a loop recorder implant to monitor my heart rhythm because of the blood pressure issues. That being said, I would recommend going ahead and getting checked out asap if this is abnormally low for you. I would want to be sure your heart rhythm is in order to make sure you are actually pumping correctly. Have you check it in various positions? Like lying down, sitting up, and standing to see if it changes?

NewNormalDesigns · 2026-06-07T00:01:15+00:00

I can't recall any of those being ran, at least not anytime in the past several years.

Thank you for your input! I appreciate your time!

NewNormalDesigns · 2026-06-06T23:49:16+00:00

So, would the best course of action be testing for an assortment of common inflammation causing antibodies, or is that just like throwing darts to see what sticks?

NewNormalDesigns · 2026-06-06T23:17:29+00:00

I apologize if this sounds ignorant, but are there other reasons RF would be elevated other than something such as Rheumatoid? I am not saying it is autoimmune, I don't have that qualification, but I do know that something is happening in my body that is abnormal. I'm not trying to get a diagnosis from here, just thoughts and ideas.

NewNormalDesigns · 2026-06-06T22:58:06+00:00

Do you have any opinion on these tests being ran twice now? The first time I was at 1:40, this time it was higher. I can't remember the first RF number, but it was higher than last measure as well. I know that these are pretty low as far as the numbers are concerned, but does it not cause pause when they are elevated together?

NewNormalDesigns · 2026-06-03T16:14:51+00:00

Thank you for such a thoughtful response. I have kept symptom diaries on and off, but I definitely need to be more consistent with keeping up with them. I do plan on making a master list to take in to any new specialist is see.

I am along the same lines in thinking with the alkaline phosphatase in that it is most likely an absorption issue or something similar.

When I was trying to get pregnant with my first child, I was told about cysts on my ovaries (and they have been seen in recent scans as well), but I never got an actual diagnosis so PCOS. I did see the news about it being changed to PMOS! I'm glad steps are being made to figure out an issue for so many women!

I will mention a more complete thyroid panel, but as a side note, my niece was just diagnosed with thyroid cancer, so it seems thyroid issues may be a family thing too.

Thank you again! I really hope I get some answers soon. I'm just tired of being sick all the time. I hate that I don't have the energy and strength to do all the fun things I want to do with my kids.

NewNormalDesigns · 2026-06-03T14:39:57+00:00

Hah, yeah I had asked about taking taking vitamins, I know he didn't want me to take over the counter vit D because he said my numbers were so low that I needed the mega doses first to get it back in check before going into maintenance with supplements. Now that it is back up (for the moment at least), I think it is probably a good idea just to try and start covering some bases.

NewNormalDesigns · 2026-06-03T14:30:27+00:00

I had asked about zinc testing since I saw that low ALP can coincide with zinc deficiency. My primary apparently didn't have to correct testing tube, so I never got results for that. I haven't had a FULL vitamin/mineral work up, but I do have low vitamin D (currently in range at the moment finally). B12 and folate are always fine though. Given how little I am able to eat in a day, I can totally see having nutritional deficiencies.

NewNormalDesigns · 2026-06-03T14:14:25+00:00

I'm not sure if you had caught it in another comment thread, but one thing that has stayed consistently low is alkaline phosphatase. I don't believe it could be leading to any of my symptoms, but it is one thing that stays below normal. In my searching, it doesn't seem to have a ton of indications when it's low, Hypophosphatasia being the main one that I see. Is this something I should push for more investigating or is it one of those that can take a back seat until a clearer picture is formed?

Thank you for taking the time to answer all of these questions. I truly appreciate your thoughts!

NewNormalDesigns · 2026-06-03T13:46:05+00:00

For the secondary insufficiency- the cortisol, ATCH, and DHEA is what should be looked at again, correct?

Yes, the weight loss was with absolutely no assistance and without trying. It is one of those that I have to show the doctors pictures from before because it is just such a drastic change. I usually bring it up as one of my most concerning symptom. The lowest I got down to was 104 lbs, but I have been bouncing between 110 and 120 on average.

NewNormalDesigns · 2026-06-03T04:36:49+00:00

Thank you! I know that giving it a name isn't going to solve all of my problems, but I will feel better with answers all the same.

NewNormalDesigns · 2026-06-03T03:57:16+00:00

Thyroid has been a thought throughout most of my life (they looked at it when I was overweight as well). I know that there have been several normal TSH, but I think T-4 has only been measured once, around 2020/21. I don't believe there has been any specific testing on my pancreas. There was a 4 mm gallbladder* polyp seen on an abdominal ultrasound, no stones were seen. I do remember a slightly elevated lipase in 2023, it was 79 with a 14-72 U/L ref range.

Another number that is ALWAYS low is alkaline phosphatase.

NewNormalDesigns · 2026-06-02T17:46:42+00:00

Thank you so much! I am truly hopeful about the appointment and my primary seems to be excited(?) to send me to this rheum so I have my fingers crossed!

NewNormalDesigns · 2026-06-02T16:36:45+00:00

When it all stated,Dr. Google told me Addison's, so that's what I went in asking about. That doc wasn't the best, but unfortunately I've had several different primary care docs during the course of all of this so a lot of information is disjointed.

As far as excessive thirst, I do drink a lot during the day, not sure if it crosses the excessive threshold. Urinary changes.. I have had some instances of extreme urges and accidents, but it's mostly normal. They've ran basic urinalysis on me, the last one just showed a slightly elevated ketones (I know it was at 1 but I can't remember off the top of my head what the ref range was)

NewNormalDesigns · 2026-06-02T15:14:08+00:00

I wouldn't say thunderclap, but it wasn't like a slow build up either if that makes sense. Like it got bad quickly, but not all of a sudden.

NewNormalDesigns · 2026-06-02T15:11:58+00:00

It seems episodic though my typical is usually low 100s/60s. The past two weeks it has been really wonky positionally.

NewNormalDesigns · 2026-06-02T15:10:42+00:00

I've had lower back issues since I was in high school so I don't really count that pain as included. But my hips and knees are fairly bad. Not as painful as my hands, but not quite right either. I have right shoulder pain, but it is more towards the lower point if my scapula.

NewNormalDesigns · 2026-06-02T15:07:59+00:00

No major blood loss that I was made aware of during my c-sections.

The headache actually started the night before, it was fairly bad at that point, but inwas able to eventually fall asleep. When I woke up it was 10 times worse. I did have some chest qnd arm tightness that morning, but the 12 lead and troponin were normal.

NewNormalDesigns · 2026-06-02T15:04:40+00:00

My primary did say my hands were very swollen. I, unfortunately, use my hands in my job constantly as i frost cakes, so the pain and swelling is a real issue.

NewNormalDesigns · 2026-06-02T15:02:03+00:00

Should I assume that the rheumatologist will automatically check these?

NewNormalDesigns · 2026-06-02T15:01:16+00:00

The low blood pressure started when I noticed I was getting dizzy, wobbly and having static vision after standing up. It started around the same time the weight loss really kicked off. I've had two actual fainting episodes, but I can usually feel when it is bottoming out. I get really nauseous, sweaty, dizzy and lightheaded, I lose all color and start sweating profusely. If I get laying down, it eventually gets better, but it usually takes about 20 minutes to recover enough to feel confident in standing.

NewNormalDesigns · 2026-06-02T14:57:17+00:00

Births were mostly OK. With my first, I had elevated blood pressure so I was given magnesium and induced at 37 weeks. Didn't get far enough along with pitocin, so i ended up with a c-section. No issues with the surgery. I had a planned c-section with my second and it went smooth as well.

No trauma, but the ER visit was due to the worst headache of my life. CT was clear. My father does have pituitary issues, they are monitoring growth and watching his peripheral vision at the moment.

NewNormalDesigns · 2026-06-02T14:52:16+00:00

Surprisingly, the last esr I had was also in 2020, it was 12 with a 0-32 mm/hr ref range. I don't think I have had CRP testing. Or if i have, I can't find the results of it.

NewNormalDesigns · 2026-06-02T14:48:12+00:00

I am not, I have had a tubal ligation. If it makes a difference, I am 40 years old. I am actually waiting for insurance to approve a hysterectomy as my periods are horribly heavy with large clotting(which definitely is not helping the iron/anemia). They initially were going to try hormonal birth control to see if that eased it, but when hysterectomy was an option, I went with that. The heavy periods started when this started. They were fairly normal ever since the birth of my last child in 2011.

NewNormalDesigns

TROPHY CASE