Possible AA, watch & wait for who knows what

[kazp]

Hello

Now that I have a little more information and no twitter, I thought I would put a little snippet here. My old twitter account helped a couple of people, and as my google searches brought me here, I thought this may help someone else.

Ok!

I'm a fit and surface healthy 54-year-old post-menopausal woman, who's had one weird health trip after another since 2017. A bit of past history has me with IBS - diagnosed in my teens, a nodular thyroid - diagnosed in my early 30's, no B12 absorption - diagnosed in my mid 30's, periodontal disease despite adequate dental care, also in my mid 30's. From there, I just didn't go to the doctors for over ten years, until some lady symptoms had me popping in for a check-up in 2017. My issue was a large polyp that was dealt with swiftly, and there was a swirl of fuss over my lumpy breasts (which everyone is bored with now, even though they are still ridiculously dense and lumpy). I was also diagnosed with subclinical hyperthyroidism and was severely anaemic with no iron stores. That was thanks to being a woman and a vegetarian who was not paying enough attention to her nutrition - whoops. I literally walked out of that doctor's office with a list, which is funny on reflection because I thought that was intense. Anyway, one by one, we ticked off the list and I was also able to add low vitamin D stores, which brought another supplement into my routine. Eventually, by April/May 2019, everything was back to normal, even my TSH levels; and I won't lie, the following six weeks after that checkup was amazing because I felt so fit, healthy and normal.

In early July of 2019, our coldest day of the time (winter here, I'm Australian), my right hand just blew up and I had little red rash spots over both hands. For a few weeks preceding this swelling, I had extremely dry skin on both hands, but just figured it was the gloves I was wearing, or the wool I was crocheting with and thought nothing of it. After ten days, with no improvement, I toddled off to the doctor; who took one look at it and said that this is going to take time to figure out. He took a swab, sent me off for a blood test, and prescribed some eczema cream. After a week or so with no improvement, I went back to my usual doctor, who prescribed me steroid cream and diagnosed chilblains with a touch of Raynaud's Phenomenon. This cream was insanely expensive and after a few days of use, upset my skin so much, it started to ulcerate. Back I went to the other doctor who took the swab, who then alerted me to the fact that something had come up in my previous blood results - an elevated MCV. I knew that this related back to B12, so thought it was just that - as did he, so he ordered more tests to check for autoimmune conditions for my hand. Once these results came back normal, except for the elevated MCV, he sent me off to a rheumatologist and a haematologist because he had/has no clue what's up.

Long story short - rheumo tested me for all and sundry with no result.

My haematology so far has been pretty good - especially when I read some of the results here. It wasn't until my bone marrow biopsy last year showed that I had moderately hypocellular bone marrow, that my haematologist even bothered to pretend to be interested in me. Earlier this year when I had my haem check-up, and my MCV was actually high normal, I thought I was off the hook, but she said that my reticulocyte count was still low, and to come back in 6 months. During that time, other tests with my doctor have shown that my subclinical hyperthyroidism has returned, as my TSH is very suppressed at .02, and I have polyps in my gallbladder and a cyst on my liver (so much for vegetarian lifestyle right!!!! still a veggo however) and my Raynaud's is next level. My heart rate is insanely low (I looked at my smartwatch when I wake up and it was 44 the other morning, and my blood pressure sits around the 90/50-60 mark) Anyway, my last check-in with haem had my reticulocytes at their lowest level yet, despite my mcv and everything else but my whites being normal, so she's plonked me into the autoimmune category, as has my doc, and I am to see her every 6 months until it either corrects itself or evolves.

As for my hand - I have lost usage of my right index finger, which sucks as in my previous life I was a photographer and still counted photography as a hobby. I have peripheral neuropathy pretty bad in my hands and elbows, so lose power at times, or have felt like my elbows are stuck in a bucket of water. I am slowly losing autonomy on my hands, especially in the cold where this year I am finding it a challenge to do up my shoelaces. My right foot is going numb at the heel and big toe, and I want to disown my feet and legs in Summer because they just ache and hurt, feel like they are stuck in warm goo, or have a hot towel wrapped around them! I also feel like I am walking in and out of air conditioning on a hot day most of the time.

Overall symptoms include - extreme fatigue, raynaud's phenomenon, peripheral neuropathy, cold and heat intolerance, nausea, headaches to the point of being chronic, joint pain, super hot red cheeks when I get hot in cold weather, alopecia of the eyebrows, - well half of them anyway, pale skin, general malaise and did I mention fatigue? Other than that, I exercise an hour every day religiously, eat like an autoimmune boss and keep as positive in this limbo as possible.

That's it!

[kazp]

Just bumping this up as I shared my info after gathering more info and deleting my twitter. Who needs that toxicity!

Hope it helps!

[exploring_options]

Hi there, looked up MCV and came across your post.

Guess that traffic on this forum is low.

Have you had a full cobalamin disorder (B12 deficiency / pernicious anemia) done on you?

i.e. Homocysteine, MMA, HoloTC, Anti-parietal cell antibodies, Anti-intrinsic factor?

If not I'd suggest you do (maybe read a bit of the medical literature on that)

[kazp]

Hi there, thanks for responding.

I know for certain that they have tested everything except the MMA, which was all a negative, but I can ask about that when I see her in January. I definitely don't have a b12 deficiency of any kind, beyond not absorbing the stuff from food and needing my daily supplement. I remember what it feels like to be b12 deficient and my neuropathy feels different to that.

My latest blood test showed a big drop in my wbc, but he is assuming that is just a dud test because there was nothing else to be alarmed about, which will be confirmed in a few weeks when I go back again. TSH is still extremely suppressed and symptoms are the same - worse at the moment as I feel like I am catching a cold quite often and the mouth ulcers are a pain in the butt.

My MCV is still a only touch above normal, which is excellent, so if those reticulocytes eventually get their act together I should be in the clear.

Thanks again and hope you are well also

[kazp]

Hello and happy 2022!

Last bloods are in and aren't as great as hoped - still stable, but on a slow decline. Everything was low normal, high normal, stable, but as she said, not normal. Reticulocytes did pop up to 28, but with 30 being the low normal here, they didn't cut the mustard. I'll be back again in July! After a solid year at .02 suppression, my TSH has risen to .1, so here's hoping that continues just to inch back up there.

Cheers and best to all!

[exploring_options]

So your reticulocytes are low, but how has that impacted your RBC count or hemoglobin if at all?

[exploring_options]

Hi again,

I am also surprised by you saying that you can't absorb B12 and are not having B12 shots?

Any absorption problem when it comes to B12 according to NICE and WHO is to be treated with B12 shots. Main reason: Absorption via gut is impaired for anyone with absorption issues. Serum B12 is not representative of how "replenished" one is after one is diagnosed with B12 absorption of ay kind.

[kazp]

Originally Posted by exploring_options

So your reticulocytes are low, but how has that impacted your RBC count o hemoglobin if at all?

Hi there

My reds are always low, but not dangerously so, and my haem has always been low but normal - except for the last test where it dipped just a touch into the low.

My RBC has always been good compared to everyone here. It is slowly progressing, whatever it is, and if it wasn't for the reticulocytes, I wouldn't be seeing my haemotologist every 6 months. It's a team at the hospital that assesses you, even though you see your own specialist, but no one knows what's going on yet. They're saying autoimmune and just waiting and seeing.

[kazp]

Originally Posted by exploring_options

Hi again,

I am also surprised by you saying that you can't absorb B12 and are not having B12 shots?

Any absorption problem when it comes to B12 according to NICE and WHO is to be treated with B12 shots. Main reason: Absorption via gut is impaired for anyone with absorption issues. Serum B12 is not representative of how "replenished" one is after one is diagnosed with B12 absorption of ay kind.

I've been taking 1000mcg of vitamin b12 since I first had macrocytosis 20 years ago and it's worked so far. I don't absorb it from food apparently but do fine with the supplements. I accidentally bought a 250mcg bottle years ago and felt it within days, so they work a treat. I'm lucky!

I've just had a shocking month or so with digestive issues and have gone gluten-free again, which is helping. I'm probably an undiagnosed caeliac, who knows. I gave up going to the docs about my digestive issues in my 20's, but will definitely stay off the gluten now. I only went back to it after all of this started because I was feeling very much 'what's the point?' and have now discovered that digestive comfort is plenty of point lol Either way, the tum is not a fan of gluten, or dairy, so it's back in that old saddle again.

I'm a few weeks off my next thyroid etc blood test with my gp, and am interested to see how it's going. My last odd results may have been due to my having the booster shot. We shall see!

[exploring_options]

Hi again.

You said above your MCV slightly elevated, what is the level?

What about your MCH?

Have you had erythropoietin (EPO) measured?

How were you diagnosed with B12 absorption issues? Was your MMA or homocysteine elevated? Was your HoloTC low? Did you have anti-parietal and anti-intrinsic factor antibodies tested?

[kazp]

G'day!

Lately, my mcv has been steady at 99, but when all of this started and until January'ish last year, it was between 102 and 106. MCH on the last test I do not know, as it was a phone consult due to a covid surge, but it was 33/34 the time before that.

My holotc wasn't low, a bit high if anything. I don't have the results of the others on me, but I remember seeing them being tested in 2019, so I'm assuming they were ok.

I haven't seen anything EPO, so not sure on that one. I've seen anti-intrinsic factor, but don't remember seeing anti-parietal. I can't be certain though because they tested me for a lot of things back then - haem/rheumo/ and neuro, and didn't find anything beyond the mcv/rbc, moderately empty bone marrow with the low reticulocytes.

Gluten free is going well, no more mouth blood blisters and a happier tummy. My right middle finger has swollen quite a bit and is painful, which sucks because it's like deja vu with my hands! On the day it happened, I had small red rashes on the knuckles on my left hand, kind of like Lupus rashes, but they went away and the swollen finger stayed. This is how it ALL started! But I'm not as rashy this time. I don't have RA or Lupus, but I certainly get a lot of their symptoms. I have my next blood test soon enough with my GP, so I might have some more show and tell for him.

[kazp]

Hello

I just received my latest blood update and in general, it is really good. Everything except my reds and MCV are fabulous. My MCV is up to 100.3 whilst my TSH is. 4, with my free T4s being low, suggesting a swing towards hypothyroidism. I am heading towards iron deficiency and will be back to taking my gentle supplement. I'll see how this goodness lasts when I see my haem in July.

[kazp]

Quick update before the next haem visit at the end of next month. I had, what appears to be, a possible transient rheumatoid arthritis flare up late March/April, with physical signs on xray of early stage RA, but no inflammation in the blood. In fact, my esr is going down. You can have random flare ups that clear up on their own, or you can develop RA later on, so we'll just wait and see. I have been taking turmeric for the last month or so which helps with 'swelling ' since I don't inflame, and the pain. However, it's not meant to be the best for iron absorption and my iron deficiency has been improving, so I'm not sure whether to continue or not. With the polyps in my gallbladder beginning their own breeding program, to where I now have a strawberry gallbladder, it might be an idea as turmeric is meant to be great at shrinking polyps.

On the positive side of things, my thyroid has bounced back to wonderfully normal, which I attribute to increasing my soy and being further along my post menopausal path. My blood counts are still stable, low normal as usual, but the mcv was a pinch lower than last time which is exciting. Hopefully it's good news next month, I'm all fixed and I can skip off into the sunset!

[Neil Cuadra]

kazp,

Is strawberry gallbladder (cholesterolosis) necessarily a problem? Does it require treatment?

[kazp]

Hi Neil,

Not from what I've been told, not yet anyway, and hopefully not all. It's progressed from 1 polyp, to 3, then to strawberry gallbladder within 3 years, so I wouldn't be surprised if surgery is an option at some point. Interestingly enough, my cholesterol levels are average, and always have been.

Thanks for responding 😀

[kazp]

Hi,

Just popping by, for what is hopefully the last time. I started this thread to replace a twitter one that I had back in the day, as I mentioned in the beginning. As an elevated MCV and low reticulocytes is my only connection to the diseases of this forum, it's probably best I toddle off.

However, if, like myself, you found this forum after googling elevated MCV and you're not a drinker, have normal B12 and are absorbing your B12, and know this as you have been tested up the whazoo - the last 3 years have gifted me with the following knowledge.....

Thyroid - get it tested and tested again. Thyroid health is not highlighted enough and does seem to impact MCV levels. Either that, or, it's really, really, really, really coincidental.

Celiac's disease - consider it, and get tested if you can, especially if you have IBS. Doctor's can be dismissive about IBS and you may have to push. I have never been tested and have seen more rolling eyeballs than I can count. But, the pain is real and the impact of malabsorption is very, very real. It's worth the head and tail to find out!

Hormones - get them tested, and if you're female and keen, don't hesitate with HRT as it may help. If you're female like me, and don't want to go the HRT route, fiddle with soy. It has helped me immensely.

Digestion - is another health element that is not highlighted enough and nutrition impacts on your bone marrow. Working with a nutritionist, or being savvy yourself with the low FODMAP process, can help you to isolate what is impacting on your digestion. I uncovered my issues with gluten and dairy here. And with garlic, eww.

Exercise - daily!

That's it! Whilst I still have no idea what's driving the bus, and I'm not normal, I'm better than I was 3 years ago, and I'm stable.

Stay well and good luck!

[Marlene]

Wishing you good health going forward. Sharing with us about your journey to uncover the underlying root cause is valuable to everyone on this forum.

Best of luck...M

[kazp]

Thanks Marlene, and if a diagnosis ever eventuates, I'll be certain to drop by. I won't hold my breath though I'm as much in the dark now as I was on July 8, 2019 when my hand blew up like a balloon! I just have a lot more needle holes in the veins for my troubles, and a LOT more knowledge about bone marrow and blood.

[kazp]

Hi all

I am just back from hematology, and everything is stable. As my last consult was on the phone, I didn't have my pathology form with me, so I was surprised to see her order a thyroid function test with the rest of the usual suspects. Like myself, she's obviously noticed the possible link between the macrocytosis and TSH levels. On that note, my mcv is back up again, but within my normal levels I guess, and the thyroid is still normal. My reticulocytes are still very low, so as she said, whatever bone marrow failure syndrome is brewing away, it hasn't announced itself yet. Hopefully, it takes its sweet time in doing so!

Just thought I'd pop that tidbit about the thyroid in here, especially how they all shot me down last year when I broached the possibility Oh, and she is ordering a thyroid function test next time as well, so it looks like it's a thing now!

[kazp]

Finally, an answer! I have lupus! This was discovered when my arthritis settled a little and my left eye became inflamed. A quick chronic dry eye diagnosis and a trip to the rheumatologist and voila, one puzzle has it's pieces in place. Now we just wait for my marrow to do its thing! Hopefully, it's a long wait!

[Neil Cuadra]

kazp,

That diagnosis was a long time in coming! I'm glad that you know the culprit at last.

Each case of lupus is different, and that's one reason it can go unrecognized (unless the tell-tale facial rash appears).

Given this diagnosis, what do your doctors now recommend?

[kazp]

Hi Neil,

It was actually the butterfly rash that got me over the line. That, and the cold hands while the face was burning. Such a creature of beauty these days!

Plan of attack, as my heart and kidneys are fine for now, is see what evolves over the spring and summer to see what my level is. I have a few little nodule, lumpy thungs popping up on my knuckles and he wants to see what else, if anything happens in the warmer months. In February, I have to have the blood and urine tests, which will probably come back as normal with no inflammation, but he'll start me off on some prednisone and plaqueril. He said 1% of his patients have negative blood results so I guess that's me. Obviously he wants me to go back sooner if anything super exciting happens but hopefully I'm just a mild case. I also have my next haematologist appointment in February so it's a pin cushion month.

[kazp]

Hi everyone I hope you're all well.

Just an update while I'm stunned and traumatised (being a tad dramatic) after my trip to the rheumatologist today, which involved a whole lot of babysplaining and not much else.

Blood wise - not much has changed. MCV is still elevated, reds are a bit low, whites were low because one of my mouth 'things' became infected, or whatever they're doing, platelets are fabulous, reticulocytes are low normal but the reticulocytes absolute are still really low. I think I've mentioned before that they like those to be around 50 and the base low on them is 30, which I've been once, with this last round having them at 18. Everything else is low/high normal but it was one of the less positive test results that I've had. She still has me in the beginning bone marrow failure class, saying it's fluctuating and fragile but stable, so that's really good.

Rheumo wise - obviously nothing came up in the blood test regarding lupus as expected, and my body didn't perform enough circus tricks to hold his non-sero interests. So I'm back to square one with whatever else is wrong with my body. Obviously not going on medication is an excellent, excellent, excellent thing, as is knowing that I won't have to deal with that guy again.

Anyway, it's back to the drawing board for me and I'm thinking of heading in the hormone direction. I do know that hormones are equally as responsible for this chronic dry eye that I have, so who knows. I also grow a lot of things - cysts, polyps, who knows what else I am growing in here, so there might be something up with that! No idea about the parasthasia, facial flushing and sun/heat sensitivity, I guess they dont matter. I tell you, the amount of research we have to do about our own bodies, they should be paying us the fee!

Ok, I'm off. Thank you for reading, take care and have a lovely day

[Hopeful]

Hi kazp,
I'm sorry to read that you are back to not having a diagnosis.

This may be a long shot, but have you had any genetic testing done for the things like Schwachman-Diamond Syndrome? Perhaps a pancreatic insufficiency is causing your digestive issues.

[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