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Pernicious Anaemia Society
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Help??

Help??

I've always had issues with fainting. Just last year, I passed out while driving, the hospital said that nothing was wrong other than my iron being low. doctors have always told me to take iron because of my levels being low. Then when I get blood work repeated, the levels are fine, the process repeats. I was referred to a hematologist. The hematologist said that everything looked fine. I immediately wanted to cry. S/N my mother and grandmother had polycythemia. Everything is so frustrating right now. They've left notes on my bloodwork saying that I have microcytosis, and that I could have thalassemia.

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Hi Wileyclaudia it doesn't look as if your Vitamins B12 and Folate (B9) were tested.

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the tests certainly do point to microcytosis - which means that your blood cells are smaller than they should be.

Although this forum has anaemia in the title it's a bit of a misnomer as the forum is actually about a condition that causes problems absorbing B12 ... which results in a different type of anaemia - macrocytic (red blood cells larger and rounder - but also causes neurological and cardio-vascular problems - its just that the condition was identified over 100 years before anyone identified B12 and found a way of treating it.

Hope you manage to get to a proper diagnosis and a treatment regime that works for you

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wileyclaudia - the results give the name of your physician - you might want to delete the current picture and put up one with the name hidden.

if you click on the down arrow by the follow post button then select edit that takes you back into the post so you can delete the current picture and replace with a different one.

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and no thyroid or vits tested either.

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Hi Wileyclaudia. I'm so sorry to hear about how worried you are, given your family history of blood disorders.

I'm assuming here that the notes left on your bloodwork were left by the labs who undertook the testing? Labs often do this as a routine way to flag to GP's and consultants that further investigations may be necessary - so it doesn't mean that you do have a blood disorder.

And it's highly likely that if you currently had any kind of blood disorder, the haematologist would have seen evidence in your blood tests and picked up on it πŸ˜‰.

Microcytosis (evidenced in your blood work by the low HB, MCV and MCH, MCHC and RDW SD) can also be indicative of iron deficiency anaemia so...just wondering if your GP is still keeping an eye on your ferritin levels (one marker of iron deficency anaemia) and perhaps doing a regular full iron panel (gives a better idea of true iron status in the body) to keep an eye on things, given your history of iron deficiency anaemia?

Also - have investigations been done to try and find out why your iron levels keep dropping...might be worth discussing with your GP. (One of the most obvious causes is heavy menstruation...or some medications can cause iron deficiency anaemia...).

Sometimes iron deficency anaemia is caused by absorption problems...and if you do have absorption problems, this may also affect the absorption of other vitamins...and make you feel quite ill.

So, as others have suggested, might be worth asking your GP to check vitamin B12, folate and vitamin D levels (some of the prime culprits)...just in case πŸ˜€.

If you want more information specifically about thalessemia (though I'm not suggesting you have this), you could try these sites:

thalassemia.org/learn-about...

helpthals.org/blog/

curethalassemia.org/thalped...

There's also a Sickle Cell forum here on Health Unlocked - they are more used to dealing with blood disorders than we are and may be able to answer any further questions you may have.

And of course....if you do get your B12 and folate levels checked and these are found to be deficent or low, then post again and we can help with advice about that.

Think it would be well worth making a list of all your concerns, flag up the family history (if you haven't already done so) and have a good chat about all this with your GP.

Really hope you manage to find some answers soon and please try not to worry too much at this stage.

πŸ‘

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Hi, thanks for replying. My b12, ferritin, and folate levels came back normal. They also ruled out iron deficiency anemia.

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As per MariLiz's reply below, if you want to post your results and the reference ranges, we can have a look at them and help with interpretation. Often, being at the top or bottom of a range (but still within it) can make quite a difference...particularly if you're at the bottom and suspect you may have B12 deficency.

πŸ‘

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Is there a way that I can post them to this so that you guys can see it?

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Hmm...the only place you can insert an image is in your original post.

You could delete the image that's already there and then insert the new one - or start a new post and refer people back to this post for further information. (Perhaps the best option is a new post, since more people will see it πŸ˜„

If you want to edit a post, click on the grey tab at the bottom and select edit...

πŸ‘

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I've updated the post with my latest info from the lab!

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Hi Wileyclaudia.

Sorry, not able to see any B12 or folate results on these labs (they're the things that we can help most with here).

Also looks like there's still one result to follow - haemoglobinopathy.

Assuming that you're going to go through these with your GP once this outstanding result is in?

πŸ‘

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Have you had your B12, ferritin and folate levels tested? I have a friend at my Art Class whose husband has polycythemia and low B12. It has taken quite a long time for him to be fully diagnosed and on the right treatment.

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Hi, thanks for replying. My b12, ferritin, and folate levels came back normal. They also ruled out iron deficiency anemia.

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You say "normal" but do you have a copy of the actual test results including the ranges? Unfortunately there are many doctors who will claim our results are normal, when, in fact, they are anything but!

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Yep. I have a copy of a ton of results. Those were in the normal range

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They also added a note of slight hypochromasia.

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GP's ideas of "normal" is sometimes not what any intelligent person would call normal. It has happened to me.

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I'm not sure what to do at this point. Should I try another hematologist?

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Hi my diagnosis was very 'cut and dried' although the GP's ignored the tests, so I had to go to a private GP. Other people on here know much more about it than I do and even more than most GP's. I'm sure you will get good advice from them.

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is your Vit D ok . Checked ok for diabetes and coeliac ?

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Yes. That's all fine

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Hi,

Just wondered if you had had a set of iron studies. You mention having a ferritin test but iron studies includes other aspects of iron metabolism besides ferritin.

labtestsonline.org.uk/under...

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My iron is above normal. By just a tad

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Above normal by just a tad ?. means just about within range. Which means it's on the low side of "within range'.

If you could write down your Iron, folate, B12 results with the range next to them that would be of more help.

A lot of GPS say 'within range' even though they're just about in range, at bottom end and should be higher especially if you have symptoms.

That's the first thing to do. Please type your results if you're unable to post them which will make things more clearer and you may be able to get help here.

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For possible other causes of inexplained fainting, have a look at Syncope Trust: stars.org.uk

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The bloodwork is (I think) able to distinguish between polycythemia and thalassemia. You may need to access a specialist Haematologist since the quoted figure are outside in some cases. Also your family history. (Some cultures report Inheritances run for three generations and may skip one.) And finally your symptoms. As you are young it is best to chase it up now. Best of luck.

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Not sure fainting can be associated with anaemia . If Thalassaemia is diagnosed they can identify which alfa or beta globins are involved and describe the eventual signs which can range from none to more significant. I quit smoking in the eighties but I live near an airport and high density vehicular traffic. There is always something. Bye

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