Iron deficiency or B12 advice or help. I suffer ... - MPN Voice

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Iron deficiency or B12 advice or help. I suffer with lethargy , Post nasal drip, Dizzieness and numb head in the morning, tongue ulcers

ironhelp profile image
10 Replies

I Also suffer with really bad joint ache in me knees , they feel like slabs of rock, really painful. i also get thick mucus in my throat, dry mouth and throat. I have been diagnosed with severe larynx muscle dysphonia, PND and possible silent reflux.

I drink 2 litres of water a day and 2 steams and just feel dehydrated and tired all the time, im just wondering if i could be iron deficent as i dont get much in my diet, or b12 deficient or another vitamin deficiency, i did ask my doctor for a lot of tests including these and full blood count, but i dont think he has done them, if i list below which test+results i have can someone tell me if it looks like i was tested for this and if not what i have to ask for, is it just full blood count, iron, b12, oh and arthritis as i think that could be to do with my joints.

urea and electrolytes

serum sodium level result= 141mmol/L ( range should be 135-145)

serum potassium level result 3.7mmol/L ( range should be 3.5-5.3) this was close to lower limit

serum biacarbonate level result 29mmol/L (was no guide range

serum creatinine level result 92 umol/L ( range should be 60-120)

serum urea level result 4.3 mmol/L( range should be 2.5- 6.5)

GFR calculated abbreviated MDRD result 83 mL/min/1.73m2( range should be above 90), so abnormal

liver function

serum total protein level result 71g/l ( range should be 60- 80)

serum albumin level result 46 g/L ( range should be 35-50) towards higher end?

serum globin level result 25 g/L ( range should be 25-35) boarderline below?

serum total birlirubin level result 14 umol/L ( range should be below 21)

serum alkaline phosphatase level result 84iu/L ( range should be 25-120)

AST serum level result 20iu/L ( range should be 5-40)

calcium profile

serum albumin level result 46 g/l ( range should be 35-50) top end?

serum calcium level result 2.38 mmol/L ( range should be 2.1-2.26)

corrected serum calcium level result 2.26 ( range should be 2.1-2.26)

serum gamma glutamyl transferase level result 12iu/L ( range should be below 50) is this low?

When i googled the one abnormality, the one boarderline and the reslut which was near the top end and the one at the lower end, they all came back with dehydration, anemia, artheritus, iron deficiency, b12....... so combined with my symptoms im thinking artheritus, iron or b12 deficiency, but my docotor says im fine and im struggling to get him to look into it even though i have a report from a speech therapist recomending i see a specialist physician to look into my symptoms!

Anyone have any advice ? and what tests i ask for?

thanks

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ironhelp
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10 Replies
Geoff_mpnfamily profile image
Geoff_mpnfamily

Hi ironhelp, if im honest I wouldn't know the answer. The only one in your list I could see that Might cause some potential issues (long term waiting for such issue to be a majour problem) is your calcium deposits..

With the exception of a GP on here I'm not sure if we can help? Most of us are more familiar with full blood counts (Red cell count, distribution widths, platlets, white cells and some of the alarms sometimes listed in the FBC.)

From that it may go on to a broader understanding of Neoplasms, Proliferation of cells and well ... the other variations of Myeloproliferative Disorders / Neoplasm.

I know your syptoms can be related to anaemia ( iron, B12, and folate deficiencies) but your numbers do not say that. Their are many other causes of those symptoms. . What are your blood counts (FBC / RBC)

Geoff_mpnfamily profile image
Geoff_mpnfamily

P.S... does your dysphonia cause you breathing trouble (to the best of your knowledge) at night or during the day?

ironhelp profile image
ironhelp

Hi, Thanks for replying, I dont know what my full blood count is, i did ask fr it done along with a lot more tests but when i was told there was nothing to worry about with my results by the receptionist i then asked for a hard copy of the results to which i was only given the about information, so im presuming they didnt do it?

what i wanted to know is, does anyone know from the results i put on here can they tell if im iron defient or b12 deficient? or is there an aditional test such as an iron and b12 test i should ask for?

I will have to go back to my doctor and ask him if they did a full blood count and if so what it was and if not could i have one, along with an iron and b12 test?

I also forgot to say ive always had really good eyesight, but in the past 6 months ive noticed if im reading and then look up at the tv it takes longer to focus to see it propery, and if i close my left eye my vision is worse in my right eye it doesnt focu as well and that i thinks only happened in the last 6 months.

when im talking i get troube breathing, i often run out of breath and im told thats to do with the dysphonic tension, i also often feel like my chest at my lungs are crushing as if they are being restricted even though im told i have good breath/lung support.

when i saw my doctor he said my blood tests said i wasnt dehydrated, so i just dont know why i feel it all the time and have all of these other symptoms and yet im finding it so hard to get anyone to look into anything, its really frustrating, especialy for someone who just recently found out they had been miss diagnosed with larynx dystonia for the past 10 years and thought i would never get better, to be now told i have dysphonic tension instead, i have hope i can now improve everything but seem to be waiting months and months to convince people to look at me and them say no they cant help i have to go else where........... so im trying to self diagnose myself to then convince medical people to test me for it or look into it!

anymore advice on the question i have would be appriciated

Thanks

Geoff_mpnfamily profile image
Geoff_mpnfamily

If you were test for anaemia they would have done a FBC, and if it was within the last 30 days the gp/ staff have to agree to give you a print out with out charge. Asuming you live in the uk.

It is very frustrating when you get a strong feeling that your gp won't hear or understand you.. I have taste this my-self and as a carer on behalf of many disabled.

The tight feeling in your chest can be anything from stress to asthma or even heart trouble.. im guessing stress. (Im not a GP. So if you feel you need to Dial 999 THEN DO SO - Its better to be save than sorry)

The best advice I can give you is, carefully decide who knows you best and who could be an affective voice on your behalf. Then ask if they would be willing to go with you to the GP.

What you are experiencing is obviously real, and cause for a good looking into. You are clearly highly intelligent letalone resourceful!

I must express again your physical symptoms described are good enough reason to check out.

God bless

Geoff

ironhelp profile image
ironhelp

Hi Geoff,

Thanks for your help, i dont believe i was tested for Anemia, i hadnt thought about it until i got a print off of my blood test results and the ones which were borderline and near limits i googled and it was suggesting anemia, b12.... so i then looked at them and i have a lot of the symptoms which go with them.

Thats why i think its worth looking into, i suppose my first step is to find out if the doctor did a full blood count, which i have a feeling he didnt , as i asked for a copy of all blood tests done and it wasnt on there.

if i ask for full blood test am i right in thinking they tell me what my white and blood cells are?

i believe the tests they did were to determine if i was dehydrated and test my organs to see if they were working right, or if something was causing me to be dehydrated.

I was told im not dehydrated and things like liver and kidneys are working fine, which is really confusing as i feel dehydrated all the time, i wake up in the morning like i have a really bad hangover even though im t total, my eyes are popping, head numb and sore, mouth dry and really sticky, then i get PND. Along with all the other symptoms described above.

My speech therapist told me i should get it looked into, but wouldnt sanctions tests, she said go to my doctor, but because she didnt refer me, or write a letter saying what i should be tested for, then when i go to my doctor he says go back to my ent speech therapist! and around we go! My GP did the tests above because i said i felt dehydrated but he doesnt seem to want to test for anything else unless ENT tells him too, which is why i dont know what to do as im told in not dehydrated even though i know i am!

Ive looked into getting tests done privately but they are so expensive!

Yes im in the uk

thanks again

babbittybumble profile image
babbittybumble

Hello I am sorry you are feeling so unwell, I don't know which MPD you have but make an appointment to see your Haematologist, who I am sure will explain all your blood results to you. Trying to diagnose yourself on the internet form your blood results can possibly give you some very wrong results, and I know from experience some of the internet sites are not safe, very frightening and totally misleading. Take care and ask for that referral.

magirose profile image
magirose

hi, not sure if you log in any more this post is old. But did you get a diagnosis?

Laura4444 profile image
Laura4444

Ironhelp - I have had many of the same symptoms as you for years. Been in the emergency room for dizziness. No one could figure out why. Sensitive throat that goes into coughing fits. Tired Tired Tired!!!! Just recently, after much research and experimentation, I believe I have stumbled on to something. Vitamin B12 is much more of a problem in this country than our health system recognizes. My doctors keep telling me that my B12 is fine. Well, apparently in other countries the red flag on B12 testing goes up a lot sooner than it does in the good ole USA. Many researchers believe that this is why we have so much more dementia in this country than others do. B12 is a major player in mental health. Also, if your stomach is not digesting the B12 properly, it doesn't matter how much you take in - your body does not get the benefit. People with IBS tend to have this problem. Many drugs that people are taking are messing with our stomachs ability to digest. With this in mind I took steps to assist my stomach. I stopped taking ibuprofen which I was taking on occasion for arthritis and started taking digestive enzymes and pro-biotics. I started cooking beef liver and eating a little piece with each meal. I also started taking a sublingual B12 supplement that is easier for the stomach to cope with called Methylcobalamin. I am amazed at all the different issues that are clearing up - slowly, but definitely improving. The post nasal drip is just barely there. I have energy to do things again - sometimes loads of it! My hair and nails are getting stronger and I can think clearer to name a few. Now some people need to by pass the stomach all together and go with injections or nasal sprays. But the key is to know that our health system is apparently not "on-line" with what is really going on with the vitamin B12 deficiency front. It would be to our benefit to learn as much as we can on our own and try some of these things that could very well be life saving. Good luck to you.

BD20 profile image
BD20 in reply to Laura4444

I know this post is old but I happened upon it this morning. It seems like you might have the same problem I have that keeps my body from properly processing B vitamins and Folic Acid. The vitamins must be processed for our body to use these vitamins. Otherwise some of these vitamins sit there looking like we have a good or high level when in fact we don’t. I have a MTHFR gene mutation. There are different types and combinations but this could be your issue.

hi there-I came upon your post by accident. I have all of those symptoms. I also have herniated discs in my neck and back which causes my muscles to tense and have spasms that I’m not aware of. Try destressing. Also-I found out I have low folate and low b12. I had my first b12 shot today. The thick post nasal drip makes eating miserable. I also have celiac disease and o avoid all gluten and grains. I have found that by avoiding drinks in plastic bottles, my PND isn’t as bad.