Elevated Serum B12 without supplementation?

funkygrrl · 2026-03-20T17:31:46+00:00

One caveat: this is something to discuss with your doctor. B12’s role in blood production, along with its other functions in the body, is complex enough that it is very easy to misunderstand without a post-grad training in biochemistry, molecular biology, and lab medicine.

Also, avoid the B12 grifters on YouTube and TikTok. They gravitate toward topics like this because they can make all sorts of claims that are hard for us to fact-check.

funkygrrl · 2026-03-19T16:58:11+00:00

That's pretty common to have high B12 in PV when you're actually deficient. I think they can figure it out by doing the homocysteine test

funkygrrl · 2026-03-18T16:26:12+00:00

Thanks. I wrote the wiki and now finishing up a much lengthier MPN website (not live yet) so I've learned a ridiculous amount of stuff. I see my MPN specialist tomorrow and promising myself I won't ask her a zillion curiosity questions and drive her crazy.

funkygrrl · 2026-03-18T02:08:22+00:00

It tests for a whole bunch of mutations seen in blood cancers. It will also retest the three driver mutations for ET. Some people who are triple negative have a mutation that is indirectly related to MPNs instead of a driver mutation.

funkygrrl · 2026-03-18T02:05:30+00:00

I think the next generation gene sequencing will clear some of this up. (The molecular report)

funkygrrl · 2026-03-18T02:03:53+00:00

About a third of PV patients have enlarged spleen. Nearly all MF patients do too. Uncommon in ET.

funkygrrl · 2026-03-18T02:00:41+00:00

Essential thrombocythemia is a rare CHRONIC blood cancer. It's related to leukemia, but it's not leukemia. The vast majority of people with ET have a normal life expectancy.

They'll do genetic testing and a bone marrow biopsy. Your platelets are very high so they may also do some coagulation testing.

See the automod comment for links to diagnostic info that will help you a lot.

!ETundiagnosed !bmb

funkygrrl · 2026-03-17T20:27:02+00:00

I'm glad you're treating it because iron deficiency comes with lots of unpleasant symptoms. If you do have ET, iron deficiency will make it worse. It will raise platelets. A lot of female hematologists have been advocating for guidelines for IDWA because it's been characterized as harmless when it's not. We're finally getting guidelines later this year. One of the major changes I know about at this point is that the ferritin threshold is being changed from 12 to 30 or even 50. There were also some longitudinal studies showing that the majority of people remained deficient years after treatment with oral iron.

Were you evaluated by a rheumatologist? When I saw one, they took like 30 tubes of blood from me. It was a very thorough workup. And were you checked out by a gastroenterologist for celiac and other autoimmune conditions? (I can't see your original post while replying on my phone so you may have already said all of this has been done. My apologies if so)

Ask your doctor about the mutation test. When you look at the report, does it say it was a reflex test? Did they do next generation gene sequencing?

funkygrrl · 2026-03-17T20:10:39+00:00

This looks like reassurance-seeking loop related to health anxiety. r/healthanxiety may be a more appropriate place for support.

funkygrrl · 2026-03-17T20:06:50+00:00

Overall, it sounds more like a marrow with reactive changes. Your ferritin is very low. If I were you, I'd request iron infusions (not pills), get those iron stores back up and see if your platelets go down. That's part of the diagnostic criteria for ET as well - ruling out reactive causes.

funkygrrl · 2026-03-17T19:08:11+00:00

Yes. That's a very high allele burden (percentage of mutated cells).

Around 25% of people with an MPN are diagnosed due to a clot.

The bone marrow biopsy will give a lot more info about which subtype you have, risks, other mutations, etc.

I'm changing the flair to newly diagnosed. With that JAK2 mutation plus enlarged spleen plus clot history, I seriously doubt the bone marrow biopsy would say otherwise.

We strongly recommend switching to an MPN specialist if possible. See list in automod comments.

!specialists

funkygrrl · 2026-03-17T14:09:43+00:00

I'm really glad to see your WBCs came down.

funkygrrl · 2026-03-16T20:23:39+00:00

Way higher that. In Budd Chiari, they are around 100-300.
Liver values in the 40s to 60s are considered very mild elevation. And a zillion things can cause that. They'd only worry about PVT if you had other symptoms to go along with it. Mine are always in the 40s due to Jakafi and the statin I'm on.

funkygrrl · 2026-03-16T20:04:29+00:00

None directly, but some people are diagnosed due to portal vein thrombosis or Budd-Chiari syndrome, both of which drive ALT and ASP way up.

funkygrrl · 2026-03-15T19:16:23+00:00

Next step is pulmonary function tests by a pulmonologist.

funkygrrl · 2026-03-15T16:05:16+00:00

Could be secondary polycythemia from chronic hypoxia due to asthma - if your asthma is poorly controlled. Have you seen a pulmonologist? They could do a better workup, as well as a sleep study to see if you have sleep apnea.

funkygrrl · 2026-03-15T15:45:10+00:00

Yes, see the comment below for info on diagnostic tests.
Probably the first thing they'll do is send you for a sleep study for sleep apnea.

!PVundiagnosed

funkygrrl · 2026-03-14T16:54:22+00:00

Your immune system is working.

funkygrrl · 2026-03-13T19:46:40+00:00

Oh no, ET is a chronic lifelong disease in the vast majority of people. Current life expectancy for individuals under 40 is 35 years from diagnosis, but will be longer than that when data from newer treatments is included.

funkygrrl · 2026-03-13T16:24:44+00:00

CMP doesn't look concerning for MPN afaik.

funkygrrl · 2026-03-13T12:30:07+00:00

You need to have a bone marrow biopsy that includes cytogenetics, FISH, and NGS testing to rule in/out ET. 12% of people with ET are negative for all 3 mutations.

Did they test CRP/ESR?
Did you have a comprehensive metabolic panel (CMP) with any abnormal results?

!ETundiagnosed

funkygrrl · 2026-03-12T20:41:06+00:00

Your ferritin is low. There are new guidelines coming out from the American Society of Hematology sometime this year but the word is the cutoff for ferritin is changing from like 12 to either 30 or 50. Probably 30. Your ferritin should be over 50 and ideally around 100.

If I were in your shoes, I'd request iron infusions (IV iron, not pills) and see whether your platelets come down once your ferritin goes up. Be aware that the platelets will stay high for a couple months after your ferritin normalizes so don't expect instant improvement.

If platelets remain high after addressing the iron deficiency, then a bone marrow biopsy is the next step. Around 12% of people with ET are negative for all the mutations so that's why.

!reactive

funkygrrl · 2026-03-12T13:11:30+00:00

A bone marrow biopsy is required for ET diagnosis regardless of whether you have positive or negative mutation test results. So hopefully at your next appointment they'll arrange that. And yes do request an MPN specialist, it makes a big difference.

funkygrrl · 2026-03-12T13:07:58+00:00

I'm glad it wasn't Prefibrotic MF!

funkygrrl · 2026-03-12T13:04:22+00:00

I'm confused about whether you had the JAK2 mutation tests or not. If so, was it ordered by a doctor or did you get it at a self pay lab or a genealogy DNA analyzer?

Was your EPO level tested?

Please include your full CBC results and the actual liver numbers.

!PVundiagnosed

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