Hi .... I am back for your assistance and advice if you are able, please...
I am sooo frustrated, very low, and feel i am losing a long fought battle with GP!!..Since i last wrote on here, i have constantly been in battle with Dr...After all your advice on my last " blood results "...I went back to Dr, she listened, did more bloods, she said they were " normal "... Not fully understanding what " normal " means, I argued with her, that i felt it would not do any harm to put me on a dose of B12 injections. She said she wanted me to have more bloods done!!...( they have more of my blood than me!!) Then she would see about a trial of B12 treatment...I was ecstatic, I thought whoopie they are listening to me, after 10yrs and more of being ill...Then out of the blue, a few weeks later, i received a letter in the post, from the Hospital, Rhuematology Appointment...I thought, what on earth is this about?? I rang surgery to be told that it was a referral from Dr to be seen by Specialist. Well, even i know this Specialises in joints/bones!!...So i was not happy about this, thinking here we go, Dr not listening to me again!!....I saw Specialist 3 weeks ago, told her i really had no idea why, i had been sent to see her, and after once again describing my symptoms to her, she wasn't sure either!! She examined me, told me how flexible i was!! Then told me she suspected all my symptoms were Fibromyalgia related...to confirm this she wanted more " blood tests "...I told her, i do not have Fibromyalgia!!...She then said to help me relax muscles at night to take Amitriptyline...Unbelievably these are anti-depressants, i was pulling my hair out by then believe me...I asked her, to solve WHY I am constantly dripping wet? horrendous pins & needles, weight gain etc etc...Hence, surprise, surprise a letter came last week stating " all clear " no rheumatics etc...I also have received another letter to have Ultrasound on my Abdomin??....I saw another Dr today, that doesn't know me, had not received info from Hospital regarding Fibromyalgia results!! Plus said that they are checking my Liver with Ulrasound, because of slightly raised " red blood cells "... Which first showed up 2007...Honestly i really do not know what to do any more, i feel so poorly all the time...I am supplementing myself with a B12 spray and B12 vitamins, they seemed to give slight improvement, but i feel no benefits now, I possibly felt improvement for awhile because my body had a hit of what it needs!!...I have enclosed some more Blood Results below...Don't know if they mean anything to you lovely people...I have tried comparing them to some i put on here about 3-4 months ago,
Serum vitamin B12 level ( XE2pf )................. 647 ng/L [ 190 - 660 ].... Normal serum B12 ( False normal B12 results can occur rarely )..Contact haematologist if clinical suspicion of B12 defiiciency. New B12 assay in use from 10/11/15
I think GPs seem to see thyroid, b12, folate etc issues as 'not that important' and the ranges for blood results are 'absolute'. As for looking further into an issue, well, they seem to be brain-dead, don't they! Argh!!!
Could you ask to see a Haematologist, as suggested in the blood results? Even then, would need to be one who recognised B12 deficiency, or whatever your deficiency is.
Have you considered self-injecting B12? Maybe that would be your solution?
I do hope you find someone who will both listen to you and be a bit pro-active and even do some reading up on it all.
Sorry, but I'm not able to comment on your blood results
Raised MCH and MCV can be associated with B12 deficiency and folate deficiency. Your MCH (Mean cell haemoglobin level) is above upper limit of range and your MCV(Mean cell volume ) is close to top of range.
Flowchart makes it clear that in UK, people who are symptomatic for B12 deficiency should have an IFA (Intrinsic Factor Antibody) test and start initial b12 treatment. IFA test can helpt o diagnose pA but test is not always reliable and it is possible to have PA (Pernicious Anaemia) even if IFA test result is negative(Antibody Negative PA).
I'm too tired to add more now but I've written some very detailed responses in last 3 months. You may find some useful info if you search for them.
I am not medically trained just someone who has struggled to get a diagnosis.
Hi sorry for delay...Yes i am symptomatic for B12.... Like so many people i feel i am fighting a losing battle with GP..She has sent me for numerous blood tests, A Rheumatalogy Specialist ( results came back negative from them, not surprised!!)...GP now saying she has been in touch/spoken to Haematology who have said my " large Red Blood Cells " in their opinion has nothing to do with Pernicious Anaemia!!...Hence they want me to have a scan on my liver!!....I believe i also am symptomatic for Underactive Thyroid....I feel so low and despondent at the moment...I feel i am never going to get correct diagnosis...I am usually a very strong person. I will keep fighting my corner until some diagnosis has been found...
Have just had Ultra Sound Scan done on Liver, and surprise surprise it is fine!!.... I am glad it is fine. But, Now the GP might stop saying my Large Red Blood Cells are " alcohol Related "...I hardly touch alcohol....Very Very Frustrated at the moment...Sat writing this and my Hands and feet are so tingly and painful with pins & needles ... the only way i can describe it...It's like " popping candy you eat as a child ".... Pounding headache, stomach so tight and bloated, I just sent a picture of my tummy to my daughter-in-law...She is shocked, i look 6 months pregnant, this on a tummy that was fasted for 12hrs due to Scan!! Hopefully get it sorted in the end
Just a quick note about the anti-depressants. They are known to be muscle relaxants! That had been explained to me in detail, when I was taking Diazepam for depression, but getting chest pains half way through the day, I was then put on Clonazepam, as it has a longer "half life", and I then did not get the chest pains any more.
That was before I was diagnosed with B12 deficiency, 1 year ago, which then brought on the chest pains again. The B12 fixed that up!
My chest pains have returned though, during the last 6 months, and I am awaiting test results to find out why? Doc seems to suspect Hypothyroidism, brought on by the extreme stress when my Mother passed away in January. Symptoms are almost identical to B12 deficiency (dizziness, fatigue, tiredness, difficulty in concentrating, chest and back pain, muscle cramps, etc!) which would explain why I had thought that my B12 SI had suddenly stopped working?
Unfortunately, your test results did not have a TSH test done.
I am replying to you, because the same thing seems to have happened to you as happened with me, the "wonder why the B12 seems to have stopped working"?
I am not an expert by any means, just a person who is suffering and sharing my experiences.
Point 5 is about being symptomatic with a normal range B12 result. It mentions the possibility of functional B12 deficiency. In functional B12 deficiency, there is plenty of B12 in blood but it can't get to where it's needed in the cells.
The flowchart I gave a link to in above post, makes it clear that people in UK who are symptomatic for B12 deficiency but have normal range B12 results, should have an IFA test and start initial B12 treatment.
Article emphasises the importance of treating people who are symptomatic for B12 deficiency even if there is no obvious deficiency in blood test results.
Have you had an IFA (Intrinsic Factor Antibody) test?
Are the neurologist and haematologist aware of the BSH Cobalamin and Folate Guidelines? I gave my GPs a copy because they seemed unaware of the document.
Do your doctors know about all your symptoms? I ticked all my symptoms on PAS checklist (link in my earlier post), added any symptoms not on list and gave a copy to my GPs.
Your test result of 647 ng/L [ 190 - 660 ]..would probably be considered a good level by a lot of doctors. I note that you have been taking a B12 spray and B12 vitamins.
Is your GP aware that you have been supplementing B12? Sadly supplementing without a diagnosis of B12 deficiency can make it very difficult to get a diagnosis.
I was very symptomatic for B12 deficiency with levels that were in the 300 - 400s.
"I believe i also am symptomatic for Underactive Thyroid..."
Might be worth posting thyroid results and symptoms on Thyroid UK forum on HU.
B12 books
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Book is up to date with UK B12 guidelines. Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). I gave a copy of this book to my GPs.
"Living with Pernicious Anaemia and B12 deficiency" by Martyn Hooper. Reading this book was like reading about myself in the case studies.
"Could it Be B12: An epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive book about B12 deficiency with lots of case studies.
PAS
Some people on forum join PAS (Pernicious Anaemia Society).
WOW...Thankyou for a very indepth response...I have read Martyn Hooper, very good read, As you said it was like a mirror image of myself as well.....Going to go through all the useful info you have given me, thankyou so much for your time
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