Pernicious Anaemia Society
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Low Ferritin, low normal iron, significant hair loss, no one seems to be concerned

My Ferritin level is 7, iron 12.6, I have significant hair loss (which is why my iron was tested by the dermatologist).. my pcp is not concerned... after a month of trying to get into an Endocrinologist, saw him yesterday. Doesn't seem too concerned, told me to take OC iron (but didn't say what kind or how much). Tried to get into a Hematologist but wont see me until after i've been on iron therapy for a few months. Im going Saturday for hormone type lab work (for my fatigue), but he (Endo) doesn't seemed interested in my hairloss (which, again, is the reason for all of this) haven't been able to get pregnant (im 35 yrs old), have migraines, anxiety, depression, alopecia (confirmed this isn't my alopecia).. I am not over/under weight (5'2 / 121 lbs). I have regular menstrual cycles (and not a heavy bleeder), and I eat plenty of Iron (spinach, red meat, beans). I am so frustrated and at a loss... from what ive researched, 7 is extremely low for ferritin, so why am I the only one concerned, especially with other symptoms accompanying it. I bought OC iron and started today, but from what I researched, it could take 6 months or longer to replenish my storage (if im even taking the right type and dosage), and im going to have no hair left. My already baby fine hair is steadily falling out with no regrowth... please advise on what I should do or who to see to help, since it seems to be 'no big deal' to the doctors ive seen. Please help

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Nicki, despite the 'anaemia' in the title this forum is actually about a condition that causes problems absorbing B12, one of the symptoms of which is a particular type of anaemia.

People do also have problems absorbing other minerals and vitamins including iron but not everyone with PA has this problem.

You mention an endo - does this mean you have thyroid issues ... or diabetes.

hypothyroid patients often develop problems absorbing minerals and vitamins (mechanism not clear ... and it doesn't seem to be confined to auto-immune causes as one possible mechanism is slow transit in the gut due to muscle weakness as a result of low thyroid hormones). The first mineral/vitamin affected is usually iron.

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Oh ok! Thank you! I wasn't aware this forum was specific to PA. I don't know about thyroid issue yet, I'm having a hormone panel done tomorrow.

Thank you for the info :)

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i would urge you to watch BBC documentaries (dr chandy )

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Although I suspect you may be in the US Nicki, this is what the BCSH guidelines have to say about autoimmune disease in general:

"Pernicious anaemia is one of a number of autoimmune diseases, including Hashimoto's disease, type 1 diabetes, vitiligo and hypoadrenalism, which may coexist together."

BCSH, NICE and UKNEQAS all have guidelines on treating B12 def. You could write or email the latest BMJ research document to the surgery - link given below.

Another helpful site also has a list of symptoms, (which include infertility and loss of hair) as well as the film on Dr Chandy mentioned by drareg and templates and advice on writing to your doctor as it seems likely you may have a problem absorbing essential nutrients from food, (of which B12 is the most difficult as it goes through a more complex process).

b12deficiency.info/what-to-...

bmj.com/content/349/bmj.g5226

..................."......

Cmim/BMJ document. " Summary:

* Vitamin B12 deficiency is a common but serious condition

* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given."

"If there are neurological disturbances, then treatment should be expedited and started without delay - 1,000 u.g. i.m. on alternate days. This should be continued for up to three weeks or until there are no further improvements".

..........................

stichtingb12tekort.nl/surve...

" The need for quick and correct treatment is emphasised further by the fact that after a year of treatment only 4 % of patients are fully recovered. Fortunately half of the patients have experienced a lot of improvement in their symptoms after a year of treatment but there are still a lot of patients with remaining symptoms, who could possibly have recovered if their treatment was started promptly and adequately."

Good luck for better treatment !

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Thank you so much for the info!

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Hi Nicki35, as Gambit said, this is the Pernicious Anaemia forum so we are not the best people to ask. I did have a look for a general anaemia board here on Health Unlocked but couldn't find anything. I will try to help a little anyway.

Where the tests done by your doctor/consultants? Sometimes they tend to ignore tests that you commission yourself. It often pays to be persistent, try having a chat with your GP about your concerns. NICE has some extensive information on Iron deficiency anaemia, cks.nice.org.uk/anaemia-iro...

As you say, 7 (assuming microgram/L) is low and the NICE suggested treatment of 200mg of ferrous sulfate twice a day, is much higher than over the counter tablets.

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Thank you! Yeah I need to be a little More persistent with my concerns. I'm in the process of finding a new GP... mine didn't even look at my iron workup (ordered from another doctor) until I mentioned it! My appointment was to specifically go over my lab work.

Thank you for the info!

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Nicki35,

Low ferritin can indicate iron deficiency anaemia. What is the iron lab ref range? Did your PCP do a complete blood count?

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Yes they did a CBC, my iron levels were on the low normal side but ferritin below low level... from what I've gathered from other forums and articles, ferritin needs to be around 50 for hair to not fall out. And With ferritin being the 'storage' of iron, my blood count will continue to go down if I don't get my iron storage levels up, (from what I gathered)

Thank you

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Nicki35,

In the CBC were MCH, MCV and haemoglobin in range?

Ferritin needs to be around 70 for hair regrowth.

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Yes everything else is in range, though most not optimal (low side) with the IRon binding capacity on the high side

Total iron range 40-190

Mine 78

IBC range 250-450

Mine 445

Saturation range 11-50

Mine 18

RBC range 3.80 - 5.10

Mine 3.92

Hemoglobin range 11.7-15.5

Mine 12.3

Hematocrit range 35.0-45.0

Mine 35.5

MCH range 27.0 - 31.4

Mine 31.4

MCHC range 32.0-36.0

Mine 34.6

MCV range 80.0-100.0

Mine 90.6

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Nicki35,

You aren't iron deficient but you could supplement 2 x 210mg Ferrous Fumarate to raise ferritin. Take 1,000mg vitamin C with each iron tablet to aid absorption and minimise constipation. Retest in 4-6 months as iron should remain within range.

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Thank you! So will that help my hair from falling out and help it regrow?

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Nicki35,

If your hair loss is due to low ferritin/iron supplementing iron will help but if it is due to other causes, no.

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Thank you! I'm getting a hormone panel done tomorrow am so hopefully that will shed some light on what's going on!

Thank you

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Nicki35,

If it includes a thyroid hormone panel post the results and ranges in healthunlocked.com/thyroiduk for interpretation and advice.

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I'm sorry you are feeling so un well. I was very similar to you when I was diagnosed with celiac. I progressed to being bed bound for 2 years. That low of ferritin will make you feel terrible and for me the harder I tried to keep going the worse it got. Make sure they test you for malabsorption disorders like celiac and I would have them test your b12 as well seems like a lot of these things can come together. In the meantime get on a very high nutrient dense whole foods diet. Do mindfulness training to help decrease your anxiety. Don't give up I just had a very healthy baby at 40 after all this. I hope you start to feel better soon.

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Thank you so much!!! Yeah my b12 is low also but not out of range. i feel awful but I kinda always have! It's like my normal. I'm really concerned about the hair loss which makes me extremely insecure, which stresses me out, and that in turn affects me physically as well. Vicious cycle! Thank you for your encouragement and I'm glad you're doing better! And a huge Congratulations on your miracle! That gives me hope :)

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Hi Nicki, when you say your B12 is low but not out of range, can you say what it is, and the reference range? Just because the serum B12 test is renowned for having a normal level set far too low. I also have very low ferritin and I know that this can mask B12 deficiency by making your MCV appear normal when it isn't. I'm only a patient but am discovering more about this all the time!

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