I need some advice

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I need some advice
« on: July 14, 2017, 07:38:49 AM »
EDIT: So I finally found my panel. I thought I had lost it. Turns out it was under my Kleenex box. :P

So I've had problems with low B-12 and low Iron all my life. No doctor took it seriously until a couple years ago when it was discovered that my red blood cells were too small.

I will leave out all those that are normal or irrelevant.

The last blood test I had contained:

ALBUMIN: 3.5 /dL

RDW: 15.9%

MPV: 7.4 fL

IRON BINDING CAPACITY: 247 mcg/dL

IRON, TOTAL: 28 mcg/dL

RBC: 4.53 million/uL

HEMOGLOBIN: 10.8 g/dL

HEMATOCRIT: 34.8%


CPL Platelet: 460 K/UL

CPL MCV: 76.7 fL

CPL MCH: 23.8 PG

CPL HLA B-27: PRESENT

CPL VITAMIN D, 25: 29 NG/ML

CPL VITAMIN B, 12: 155 PG/ML

CPL IRON: 12.6 G/DL

My Hematologist had ordered two of these while taking Tandem Plus. The tests both came back similar, with a tiny change on the down side between the two. These numbers are the average of the two.

I've been diagnosed with Gastritis, Unexplained Anemia, Ankylosing Spondylitis, Degenerative Disc Disease, Femoral Stenosis, Asthma, and Sciatica. I've had an upper abdominal ultrasound that found everything was normal, yet I still have a lot of swelling and bloating in the upper stomach. At various times during the day, my legs become shaky and I can hardly stay awake. I take OTC iron and B12 supplements but they don't do much good. I can't afford any prescription other than my inhaler. I haven't been able to do much since I lost my job because my illness was making it difficult to concentrate and not get sick constantly.

None of my doctors can figure out if I have Beta Thalassemia Minor or Pernicious Anemia. Anyone have any advice on how to approach my doctors? I can't afford infusions or shots or even biologics for my auto immune disease. I've been fighting with SSDI to get disability since all these together make it almost impossible to work.
« Last Edit: July 15, 2017, 06:52:54 AM by Braigwen »

Re: Dr.'s can't figure this out...
« Reply #1 on: July 14, 2017, 07:18:19 PM »
I feel I should also note that no one else in my family has this condition. And my dad was exposed to Agent Orange in Vietnam years before I was born. I don't know if that has to do with anything, but I felt I should say that.

I know I don't have much in the way of test results. If I could afford more tests I would. But me and my mother who is helping me are barely making it right now.
« Last Edit: July 15, 2017, 02:20:53 AM by Braigwen »

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Offline Andy Battaglia

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Re: I need some advice
« Reply #2 on: July 16, 2017, 11:53:42 PM »
Do you know if you've ever had a hemoglobin electrophoresis test done? This would give percentages for the different types of hemoglobin found, HbA, HbF and HbA2. The HbA2 is the key to diagnosing beta thal minor. If you don't have the results, call your doctor and see if they are on file. This is needed to distinguish between thal minor and iron deficiency, IDA.
Your B12 is extremely low and would explain why you have symptoms of two different things. You do have pernicious anemia in addition to either thal minor or IDA. I'm not if sure you have IDA from these results. It's certainly not definite. It looks more like thal minor and if so, you shouldn't be taking iron. You should be taking sublingual (under the tongue) B12, at least 1000 mcg daily. You should also be taking folate, 1-2 mg daily. And your vitamin D level is also low. I've found that taking one 50,000 IU capsule weekly does the job. You have to get your D level up in order for most bodily functions to work as they should.
And finally, if you have no or low income, you are eligible for Medicaid and should apply for it. It would help with any further testing that is needed and also cover any needed meds.
Andy

All we are saying is give thals a chance.

Re: I need some advice
« Reply #3 on: September 22, 2017, 04:03:37 AM »
Hello, I am new to this site. I was diagnosed with Thal minor(beta) when I was younger, I am 24 now and am only really starting to learn a little about it. The doctors don't seem to know much about it at all, I am wondering if anyone can help me in regards to the best way to manage it. I am tired and weak often, I also suffer from endometriosis so worry about my iron being depleted.
I recently had some blood tests done and these were the results. I would really appreciate any one helping me out in regards to where I could improve these results and what they all mean. I have recently got a b12 injection, and have a few more to get. I have began taking folate (500mg) and take a mega b complex though I think all the levels are quite low in it. I also bought spa tone though am not sure if I should take it as I've always been told not to take iron?
I would really appreciate some advice! Thank you so much in advance to any one who takes the time to read this.
Alice :)

Blood test Results:

Holo TC Assay (b12 I think?): 118, this is up from 43 last blood test due to injections.
Serum folate Assay: 43
Haemoglobin: 110 g/L
Red cell count: 5.4
Mean cell volume: 66 fL
Mean cell Haemoglobin: 20 pg
Platelet count: 303
White cell count: 7.5
Thyroid stimulating hormone: 0.7 ( I asked the docs about this as I thought it seemed low but they said it was okay?)
D3: 78
Serum Iron: 19
Transferrin IBC: 64
Transferrin saturation: 30
Serum ferritin assay: 45

I have a few more blood tests, sodium, potassium ect, so if they are relevant let me know and I can write those results too!
Thanks so much!

 

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