Possible AA, watch & wait for who knows what

[Sally C]

Hi Kazp,
Are you by chance taking Vancomycin? That can cause Red Man's Syndrome.
All the best,
Sally

[kazp]

No, thankfully, I am completely medication free at the moment, apart from b12, vitamin d and iron supplements.

I'll have to go see what red man's syndrome is now. It sounds wild

[kazp]

I'll elaborate on these red cheeks a little. I noticed in 2019, the last time I actually took a decent photo of myself, that my cheeks looked flushed. I didn't think too much of it as it was the start of winter and I had been warming up in the mid morning sun, and I was also perimenopausal. These cheeks just slowly became a thing, especially the last few years where I'm relieved I am not heavily social, or work out of the home because they're just so ....there. I mentioned them here and there to my gp but I think we both dismissed it as menopause. I'm a few years over that now and they're worse than ever. I don't always feel them, unless I touch my face, so they're not part of a hot flash or anything. If I'm in a stuffy room or wearing a mask, I can feel them coming on. From Nov, we put up blockout curtains and I've avoided going outside in peak hours where I can. If it's hot or stuffy, I use the fan and dress down to a crop or tank top. It took a few months but now I only have them on really hot days in the afternoon and for a short time. My last really bad cheeks day was Christmas day, where even though under cover, it was outside and we did a bit of driving. So there's no flashing, no sweating, nothing else, just this sunburn in a ski mask with too much outdoor time. Gosh I'm a babe! Lol oh and that original photo, which I had originally always thought was after my blown up hand that started all of this, was actually 3 weeks before, according to the pic data, so not long before the fatigue hit too.

[Sally C]

Red Man is bizarre. My husband was red from head to toe - all because of the Vancomycin. Another time they tried it against my wishes - saying it was infused too quickly. They started slowly and in 5 minutes he was beet red again.
I wish you well!!
Sally

[kazp]

Wow, that's intense and thank you, best to you also

[Hopeful]

Originally Posted by kazp

Hi Hopeful

No I haven't and I also haven't heard anything about my pancreas other than it isn't swollen, so I will check that out. I have to see my doctor sooner rather than later for my annual gallbladder ultrasound, and a few other things, and we will no doubt discuss what to do next. He did mention genetic blood tests a bit ago, but they're expensive in this country and private insurance doesn't cover much. I will discuss it a little more with him. I'm a bit defeated after the rheumatologist visit and how dismissive he was because it wasn't in his lane. I mean, it's not normal to sit in a crop top besides a fan in a room full of blockout curtains to avoid looking like I've been sunburned in a ski mask, but he didn't even bat an eyelid lol oh well. I'll pop in after I see my nice doctor if he has anything to add.

Edited to add....looking into this SDS and it is ringing a bell in that my haematologist may have tested me for this over the while, or I've read about it along the way. I'll definitely chase it up because it certainly does resonate, doesn't it

Genetic testing is expensive in this country as well! Even if you can't do genetic testing, it may be worthwhile discussing with your doctor whether you can try pancreatic enzymes to see if there is a positive effect. You will know pretty quickly if they work. Perhaps malabsorption issues are contributing to other vitamin/mineral deficiencies and their associated effects. Best of luck!

[triumphe64]

Perhaps it is LGLL.

[kazp]

Hi well I hope not, though the symptoms do fit. I don't have positive RA factor or ANA, which seem to have a high percentage, and I didn't see Cd34/117 positive listed, which was listed in my bone marrow biopsy from a few years ago. They have checked for epstein barr, which I have had, but wasn't active at the time of the test.

Thanks so much for all of this knowledge and suggestions. Its my 4th year without a diagnosis and going around in circles, so i really appreciate it.

[kazp]

Hi ,

I'm back from seeing my Dr, and it was lovely to see his friendly face. We had a good discussion about everything and all of the above, and we're just going to park it in the aplastic anaemia basket, with the option to jump into another basket if any other symptoms prevail, and wait for it to evolve. Hopefully, that takes a long time, and I'm older and greyer than I am now. He wasn't dismissive of absorption or hormones, but said that everything has been going on for a long time, and the clinical symptoms are autoimmune, with or without the blood results to confirm it. So, it's back to watch and wait, and a Monday ultrasound of the gallbladder to see what else has decided to grow in there this past year. Obviously, I'll update if anything interesting happens. .

[kazp]

Hi everyone I hope everyone is well.

Good news on this end, with my recent checkup being stable. Reds and whites are low, but haem is good and my platelets are kicking goals. My MCV has gone back up to 101, so that's still a thing. My silly thyroid is being a pain again and is back at .4 for the TSH, and is no doubt planning to keep on enjoying its time in subclinical thyroid land as we head into summer. Reticulocytes are still low at 19, and this is the first time that they haven't moved into the 20's after dipping into the teens. However, she's bored with me (hooray) and I can relax into an annual visit now. Obviously, I would go back earlier if anything changes, but hopefully, I just keep plodding along.

She did have a few interesting comments as we chatted away. She commented that it's all very 'seasonal', which I have to agree with, and that they're noticing that because people are being tested younger, they're learning of these things before their time. I'm not sure how that works as this all came about because my right hand blew up 4 years ago, and we still don't know why. I also had vitamin b12 macrocytosis 20 years ago, which was rectified with the supplement I still take daily. Who knows, I don't care because I don't have to go back for a year. Yay!

On the symptom side of things - I'm like a slowly deflating balloon. I'v had to drop my exercise back to just walking and yoga, and I need so much more sleep. My arthritis is bad and I still look like I'm sunburned in a ski mask, but do not care. I still enjoy my time outdoors with my dogs in big hats and glasses, and wear that skin mask with pride.

I guess I'll leave this as is unless anything exciting happens!

[kazp]

Hi

I'm popping in with an update, in the hope that now I'm making it 'dramatic', it will all calm down and go away.

I've been travelling really well to be honest, and have had decent results to go with that. I'd been making the most of it, loving life, being active, until April when it started to cool down here, and my fatigue levels started rising. I'd been taking myself rather seriously as an old yogini, and noticed that I just couldn't practice as I was just months earlier. I'd already decreased my morning hour power yoga to 45 minutes, but I thought that was because my husband had been dealing with the illness, then later passing of his mother, so had been interstate on and off, and I had a bit more manual workload than usual. We also had some house renovations happening, and we all know how draining that is. So, I cut that back to a strength yoga, and as life settled, I focused on slowing down a little. Come May, my troubled finger that started all of this blew up again, as did the top of the middle finger beside it. I had chilblains and sensitive skin (like blisters) for the entire winter (and beyond, I'm only just healing from a mid spring one). At the end of June, my husband and I both finally caught covid for the first time. On the surface, it looked like I was coping better than he was. He had the terrible cough and was really ill with it, and I don't know if it was my chronic post nasal drip saying 'pullease' to covid or what, but I escaped the cough, and apart from a few rough days I did fairly well. I had high fevers longer than he did though, and chills that would rattle any old cage in those few days, but I didn't need any sort of hospital visit or antivirals.

I had my annual haem appointment 3 and a half weeks after our covid symptoms had surpassed, and didn't have high expectations. There was a lot of red markers in those results. Everything was low, except my haemoglobin, which was normalish and my mean reticulocytes were down to 13. She also noted that I'd lost weight. I knew I'd lost a little with covid, but it was 3kgs since my last appointment, which surprised me. She said that the bone marrow can shut down during an infection, and requested a checkup in 3 months. No problem we said, and we went home and started watching my weight. It has been an interesting few months. Since covid, I have been so weak and fatigued - like just exhausted at the end of the day. You know that fatigue where it's hard to lift your legs, let alone walk? I can't stand for too long, or lift my arms for too long, but I can walk long distances just fine. My connective tissue pain is next level, especially in my hips, knees, and my right big toe! That pain has been increasing since April, as has the fatigue, so I don't want to give covid all of the credit. As of today, I'd say I'm at about 80% of my usual capacity, but when I reflect on where I was at this time last year, I'd bring that back to 60%. I've had to dump light weights, cut my yoga back even further to baby beginners, and poor old husband is doing more chores. Life has changed.

By the end of September, with this weird weight/energy/meh going on, we decided that I'll harass my dr. and check on the old thyroid, and see how she's going. She'd been normal for ages now, but it would explain the weight loss. I was skeptical because I've always been able to easily put on weight when she's been out of whack. He did the CBC, thyroid, and also tested my ferritin. My blood test was 'amazing'. It's hasn't been this good in years. Things are low normal, but normal. Even my MCV was more normal than normal at 96! My whites were low, but higher than when I saw her in July, and my globulins were low, but no one was talking about them so, no problem. My ferritin was pretty good for a vegetarian, and my tsh was .1, so could definitely be the reason for my weight loss. My t4's and t3's are all normal, and my tsh has been lower than this at .02, so we're not worried about it.

I had my 3 month check-in with her today, and haem is good, whites are still low but higher than when I saw her last, platelets are normal, but my reticulocytes were down to 10! As I said to my husband, that result does match how I feel physically, because I've been saying that these amazing results just don't lol. I mentioned that my thyroid was a bit wonky, but she didn't seem interested. She said that if my reds go down, that will be a problem, and asked me to go back in 3 months.

I was going to go back to the dr about my fatigue issue, because I was ridiculously exhausted last night on a great night sleep, but I will just plod on and wait and see.

Ok, so that's where I am at, and when I press submit reply, I will now jinx my reticulocytes into a better number!!!!!