High MCV and MCH for 3 years, very low ferritin. All with no anemia. Normal B12, Folate and Iron levels. Help please?

[looking_for_answers]

Hi all,

I'm new here.

This my third year of consistently high and increasing MCV and MCH levels, coupled with extremely low and unresponsive ferritin levels.

More on blood results:

* MCV (April 2016/August 2017/March 2018/July2018/June 2019/July 2020)

95.1/95.7/96.2/101/100/104 normal range [83.5-99.5]

* MCH (April 2016/August 2017/March 2018/July2018/June 2019/July 2020)

31.4/32.1/31.4/33.9/33.6/34.3 normal range [27.5 - 33.1]

* Serum ferritin (April 2016/August 2017/March 2018/July2018/June 2019/July 2020)

12/-/8/21/8/10 normal range [10.0 - 120.0]

-->Supplemented after March 2018 with 100mg ferrous fumarate for 3 months

-->Supplemented after June 2019 with Ferrous fumarate 210mg for 6 months

* B12 (April 2016/August 2017/March 2018/July2018/June 2019/July 2020)

-/496/700/-/-/- normal range [160.0 - 800.0]

* Folate (April 2016/August 2017/March 2018/July2018/June 2019/July 2020)

-/-/13.4/-/-/- normal range [> 2.7]

More about me:

* Vegan since June 2017 (mainly whole-food plant-based. Junk food on very, very rare exceptions)

* Mostly gluten-free since March 2019, strictly gluten-free since February 2020

* I take 400iu D3 every day since January 2018 for maintenance (I was deficient in March still and was supplemented back then with 2000iu 2x day for 2months)

* I take 1000mcg sublingual vitamin B12 Methylcobalamin 2 times a week since September 2017

* Never drank (to get drunk) and since 2017 do not drink at all

Chronic/Auto-immune diseases and strange things about my health:

* I have psoriasis (discovered 10-11 years ago), now mild symptoms following UV therapy and becoming vegan

* I have rosacea (discovered 8 years ago), now on remission following going gluten-free. It flares up in 0.5 day after eating gluten cross-contaminated food.

* Since 1-2 years I have strong need of clearing my throat many times for 30min after eating a normal sized meal, like something is stuck in my throat (nothing happens with small meals).

* I nearly always have undigested food in stools

* I have glossitis and scalloped tongue

* I have hyperpigmentation in my mouth's inner lips

* Eyesight worsens progressively (worsening myopia) in on eye in a matter of few months (having to change lenses too often)

* I have hyperpigmentation (staining) around my ankles since a year ago

* I'm having a dull stomach pain more often since 1-2 years with a couple of cases of severe pain

* I'm 39 years old and since maybe a decade my hair is over 95% gray I dye my hair but I know it is all grey. I've started graying at 17-18 years old

* My nails are creating vertical ridges since about one year ago and are now splitting in the middle

* I have Terry's nails

* I have endometriosis but no symptoms (discovered in appendicitis surgery nearly 20 years ago)

* I have heavy periods since forever

* I had uterine fibroids continuously and had several small surgeries to remove them. Fibroids stopped giving me trouble (middle of cycle bleeding) after becoming vegan and had no more surgeries.

* Normal Weight. Light exercise every day.

* Never smoked

What could be the reasons for my crazy blood results?

Any diagnoses for similar cases?

[FlipperTD]

Scientist's answer, not a medic.

Your MCV has certainly trended upwards, and that looks genuine.

Your ferritin has gone nowhere, but your iron therapy is probably holding its own given your menorrhagia. It's very finely balanced. 1 millilitre of red cells lost = 1 milligram of iron lost. Youre B12 and folate levels look OK.

This looks like a case for a Haematology Clinic referral; there are folks out there who can help you.

Good luck.

[looking_for_answers in reply to FlipperTD]

Thank you very much for giving the numbers a look FlipperTD . Really appreciated.

My GP (after consulting with a haematologist herself) has requested me to do:

*B12,

*FBC,

*Blood Film,

*Serum folic acid (folate),

*Gamma GT,

*Immunoglobulins,

*Iron studies,

*the Liver Function Tests (LFT),

*Protein Electrophoresis

I've just done the tests today.

Guess we're down the root of checking for blood diseases by googling up what those tests are for.

Bracing for the results.

[FlipperTD in reply to looking_for_answers]

Don't start panicking yet! Those are all, standard tests, and beware of Google, as you'll frighten yourself into something dreadful. If you've had these sort of results going back some time, well, it's more likely it's 'you'! The top four are simply what I'd do to investigate a macrocytic picture. Iron studies are just doing a bit more than the ferritin you've had done.LFT & Gamma GT are simply screens for liver function, and can be very helpful. Gamma GT is a very sensitive test.

Hypothyroid sometimes presents with a macrocytic picture.

Just remember that the 'normal ranges' are typically 95% confidence limits, so 1 in 20 normals will fall outside one of them. The more tests you do, the more outliers. So, in the words of Lance Corporal Jones in Dad's Army. 'Don't Panic!' Wait for the results and talk to your doctor. She's clearly well-informed.

Good luck.

[Reloadfaun]

Hi can’t be any help whatsoever, just wanted to say thanks for mentioning the vertical ridges in your nails.

I have had these for a long time and never been aware that these may be (or not!) related to my B12 (or lack there of!) Never been able to grow my finger nails, permanently stumpy nails that spilt easily.

Interesting. Thanks 😊🦊

[looking_for_answers]

A few days later reverting with the results.

Sadly, MCV/MCH levels continue to climb. My B12 is near top limit and good folate levels. Despite the rock bottom ferritin (as per my previous post), Iron levels are normal.

This is the progression so far (given I have new MCV/MCH/B12/folate/Iron studies):

* MCV (April 2016/August 2017/March 2018/July2018/June 2019/July 2020/July2020 one week later)

95.1/95.7/96.2/101/100/104/105 normal range [83.5-99.5]

* MCH (April 2016/August 2017/March 2018/July2018/June 2019/July 2020/July2020 one week later)

31.4/32.1/31.4/33.9/33.6/34.3/34.7 normal range [27.5 - 33.1]

* B12 (April 2016/August 2017/March 2018/July2018/June 2019/July 2020/July2020 one week later)

-/496/700/-/-/-/728 normal range [160.0 - 800.0]

* Folate (April 2016/August 2017/March 2018/July2018/June 2019/July 2020/July2020 one week later)

-/-/13.4/-/-/-/16.8 normal range [> 2.7]

Another very strange learning from these blood results is that I continue having low ferritin but very normal iron levels:

* Serum iron level (April 2016/August 2017/March 2018/July2018/June 2019/July 2020/July2020 one week later)

10/-/-/-/-/-/20 normal range [7.0 - 27.0]

* Serum transferrin level (April 2016/August 2017/March 2018/July2018/June 2019/July 2020/July2020 one week later)

2.9/-/-/-/-/-/2.9 normal range [1.7 - 3.4]

* Transferrin saturation index (April 2016/August 2017/March 2018/July2018/June 2019/July 2020/July2020 one week later)

14%/-/-/-/-/-/27% normal range [16.0 - 55.0]

Blood film results are still missing (these are not done by machine, i.e. there is a backlog of one week+ to have a professional looking at the sample under a microscope).

All other tests came normal i.e.:

* Gamma GT,

* Immunoglobulins,

* the Liver Function Tests (LFT),

* Protein Electrophoresis

I continue looking for reasons for these crazy blood results. Pointers more than welcome.

Any diagnoses for similar cases?

[Mj1986]

I've got a similar thing in terms of MCV. Mine is now at 99 from 97 last year my mch is over range but looking back it was over range in 2006 when my MCV was 92.6. I was akso vegan but not anymore my b12 was quite liw at some point but seems ok now. I also have endo. Do you have your haemoglobin and blood counts? I spoke to a haemotologust of Friday who said I should continue to monitor my MCV but as my haemoglobin and blood counts were ok they're not worried.

[looking_for_answers in reply to Mj1986]

Really, really appreciate you touching base.

When you say a similar situation, guess you don't also have low ferritin, do you?

Here goes my haemoglobin:

* Haemoglobin concentration (April 2016/August 2017/March 2018/July2018/June 2019/July 2020/July2020 one week later)

128/128/116/124/126/128/136 Normal range [114.0 - 150.0]

* Red blood cell count (April 2016/August 2017/March 2018/July2018/June 2019/July 2020/July2020 one week later)

4.08/3.99/3.7/3.66/3.76/3.75/3.91 Normal range [3.73 - 4.96]

* Total white blood count (April 2016/August 2017/March 2018/July2018/June 2019/July 2020/July2020 one week later)

6.7/4.9/4.3/5.4/5.1/5.5/5.5 Normal range [4.2 - 11.2]

* Platelet count - observation (April 2016/August 2017/March 2018/July2018/June 2019/July 2020/July2020 one week later)

263/244/240/197/229/226/220 normal range [135 - 400]

Also for you: Sharing a paper I've read when doing research about all this, this weekend:

It states:

"Macrocytosis should always be acted upon even with normal hemoglobin level. We suggest a strategy of follow-up with CBCs every 6 months"

ashpublications.org/blood/a...

[Mj1986]

Also what about active b12 or mma

[looking_for_answers in reply to Mj1986]

Sadly I've only been tested for serum B12. Furthermore, since I take supplementation since September 2017 I guess any MMA or Homocysteine tests would not be reliable in my case, correct? What have you learned from your research on this?

[Mj1986 in reply to looking_for_answers]

In terms of ferritin mine has always been low (20-35), however I've really pushes supplements lately and it's gone up to 59 which is best yet.

[Mj1986 in reply to Mj1986]

Fyi I have been doing b12 injections to see how I respond.

[looking_for_answers in reply to Mj1986]

Hope they give you a positive boost!

[Mj1986]

The only real way to know if you are b12 defieict is through your response to self injections. Since you are vegan and have other auto immune conditions you could hace PA or be deficient. I tested homocysteine and mine was low but my MMA was on the higher end of the range (in range but at the top) indicting I might be low ish in b12 I also had a serum test a year ago which was 'low-normal') but since then my b12 has been good. Have you checked your thyroid? I have hashimotos but my thyroid is in check. The haemotologust I spoke with yesterday has written to my gp to monitor my cbc quarterly and do further tests if it continues to rise. He was very adamant though that as my haemoglobin etc was ok he didn't think it was an issue. Your haemoglobin looks good and is rising.....

[looking_for_answers in reply to Mj1986]

Good to hear you've secured consistent checking on your levels.

My biggest worry is my case is for my doctor to stop looking for answers. Hence, me here trying to learn as much as possible.

My thyroid tests have not been consistently checked (haven't been tested for T4 since 2017), but these are the results:

* Serum TSH level (April 2016/August 2017/March 2018/July2018/June 2019/July 2020/July2020 one week later)

0.82/-/0.85/-/-/1.13/- normal range [0.3 - 4.2]

* Serum free T4 level (April 2016/August 2017/March 2018/July2018/June 2019/July 2020/July2020 one week later)

14.6/-/13.2/-/-/-/- normal range [9.0 - 23.0]

[Mj1986 in reply to looking_for_answers]

Your T4 is on the lower end might be worth checking T3 (active thyroid hormone). I'm on thyroxine and my tsh is good as is my t4 but my t3 is always on the low end of normal. Optimal t3 should be in the upper half or upper quartile.

[looking_for_answers in reply to Mj1986]

Thanks again for reverting.

So, yes, I've never done any tests beyond TSH and T4.

Getting back to your results, one can have thyroid diseases despite having hormones within normal ranges?

[Mj1986 in reply to looking_for_answers]

I've got hashimotos thyroiditis, I was diagnosed as my TSH was high (4.5) and they then tested for TPO antibodies which were positive. The levothyroxine I take keeps my TSH down in the normal range. I do wonder if my wonky thyriod has anything to do with my MCV. It is possible to have hashimotos with normal thryoid hormones. It is also worth checking t3 as that's the active hormone, it's possibel to have a normal tsh but a low t3 (your T4 does look slightly low). When I was diagnosed my t4 was 16 but my TSH was high and T3 borderline. There is lots of info out there and it's hard not to worry, I've been googleing like crazy and have found probably the same as you. I am just going to keep monitoring and try not to worry, I might also up my thyroid dose.

[Mj1986 in reply to looking_for_answers]

This is quite an interesting thread, it talks about a methylation block. I have MTHFR and CBS SNP, plus low glutathione and low homocystine - I do wonder if I have methylation issues despite taking folate.

forums.phoenixrising.me/thr...

you can get a methylation panel to understand this better.

[looking_for_answers in reply to Mj1986]

Thanks. Haven't really read much about those mutations to have an opinion, but this is a good caveat blog.23andme.com/health-tra...

[Mj1986 in reply to looking_for_answers]

Did you get anywhere with this with your doctor. My Doctor doesn't seem worried and the private haemotologist I have seen also doesn't seem worried but has agreed to do another blood test in 3 months and if it has continued to increase he'll do further tests.

[looking_for_answers in reply to Mj1986]

Thanks for writing. My main doctor is still exploring but communication is not really 100% (only phone calls given COVID), my blood sample was lost so I’m redoing tests next week.

Will post back if I get new pointers. Please also let me know should you get new pointers.

[looking_for_answers]

Follow up on my case after further exploration:

Results of my blood film/smear came back without pointers to any diagnose. They've essentially suggested my doctor should check my B12 and folate (which had obviously been tested a zillion times before) and stated a cause for my macrocytosis could not be seen on my blood "yet".....

My doctor was advised by to a haematologist she consulted with about my case who informed my doctor that given I have no symptoms - and no anemia - (despite my nail ridges, terry's nails and 100% grey hair at 39 years old), I should simply supplement iron and check my ferritin level again in 6 months. That is it, nothing else from them, no planned actions to diagnose my ever worsening macrocytosis.

In hindsight, I wish I'd have asked for a full thyroid panel exploration and for a full vitamin exploration, but that did not come out when I was talking to my doctor.

I'm planning on seeing a haematologist myself next.

[Monjames in reply to looking_for_answers]

I have a similar case of raised mch and mcv over the last 9 years. Did you eventually get any answers? Thanks

[Ashweb901]

that oral B12 isn't helping you much. Try injections, even if you have to self-inject. I inject weekly, as nerve pain in my teeth cranks up at about 7 days. I also take 25 iron bisglycinate and 400 mcg methyl folate. I have to take 5000 IU daily of D3 to maintain decent levels. Likely malabsorption all around.