helen1978s story

Post your experiences of Pernicious Anaemia here. No two people with PA are the same, and sharing your experiences and reading others' may help you through this.

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helen1978s story

Postby helen1978 » Sun Jan 27, 2013 8:56 pm

i have had perncious anemia for nearly 12 years now,before i was diagnosed i had a funny turn while meeting my mum out of work it was a weird big thud in my chest which really scared me as i thought it was a sign my heart was about to stop the doctors put it down to ectopic heart beats which i still get now but not as bad as that day, then about half a year after that i had tiredness,sores in the corners of my lips that looked like papercuts and diarrhea which resembled dirty water and i couldnt eat anything without rushing to the toilet the doctor decided to do blood tests and they came back that i had pernicious anemia and i just took my doctors word for it that i would be fine as long as i have my injections which i have every 3 months i will admit i was pretty ignorant to what i had as i just took my doctors word for it and at the time i didnt have internet to find out more and also i know my doctors are ignorant to it too as every symptom i get and have had in the past since having pernicious anemia the doctors just put down to anxiety and i believed them not knowing much about pernicious anemia and they even prescibed me antidepressants to halp with the anxiety which did nothing for me and were hell to come off when the doctors decided to take me off them i dont even have regular blood tests the only time i get a blood test is if i take ill, when i was pregnant with my second daughter the doctor referred me to heamotology and they said i dont have pernicious anemia and my b12 levels were fine and took me off the injections and said my doctor is generous with medications but theres no need for injections and i had a hard time with that pregnany i had severe sickness which put me in hospital and after i had my daughter i was so tired i couldnt look after my kids properly without having to sleep a few hours in the afternoon and went back doctors had bloodtests again and it was pernicious anemia again they never sent me back heamotology again said they shouldnt of took me off the injections,i have had wierd brain zap feelings in my head for the past 4 weeks now and they decided to do a bloodtest 2 weeks ago and it turned out i have low vitamin D which now i have been put on vit D supplements and the doctor told me the brain zaps will go away but i still get them and im wondering if it is actually something to do with my pernicious anemia i get really tired a month before my next jab which i have had for years now i have been getting really depressed but my doctors wont listen to me my gp suddenly passed away a few years ago and he was the only one who listened to me the only doctors i get to see are locums who all fob me off i did get a appointment last week with a proper gp who knows me and even she dismmissed all the symptoms i have been getting its only since last week i came across this site and couldnt believe how ignorant my doctors really are i asked the gp how come i dont get regular blood tests and she said theres no need as i am being treated and i am showing no symptoms of it being low again which is wrong i am getting bad tiredness a month before my jab and the weird brain zaps i didnt really know much my self but i have been lurking around on here reading up and decided to join and just couldnt believe half the things the doctors have fobbed me off on i have had this for nearly 12 years and i have recently got very scared about having pernicious anemia i am petrified of what it can do,petrified of my doctors attitude i am scared i am going to die from this because of my doctors ignorance i just wish i never had it i have even had a few good cries over it my mother was diagnosed after me she also has thyroid problems but because she had a bad reaction to the injections where she had red blotches and trouble breathing after her jab they took her off and havent treated her since this was ages ago now and she has really bad health now she gets regular blood tests because of the thyroid but again the docs are ignorant to it i am just really petrified of all this
helen1978
 
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Location: England (leicester)

Re: helen1978s story

Postby lessix » Sun Jan 27, 2013 10:03 pm

Hi Helen
By jumping on the forum, you have just taken the first major step towards wrestling back a sense of control over your PA. You can stop holding your breath now :) Our fantastic Mods will be along shortly.
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Re: helen1978s story

Postby helen1978 » Sun Jan 27, 2013 11:37 pm

I'm at the end of my tether with my doctors when i went last week i told the doctor i am most certain the brain zaps are the pernicious anemia but she dismissed me saying its the low vitamin D she did say to go back in 2 weeks if it continues but i know she will put it down to something else, i forgot to mention 2 years ago i started getting tinnitus and went doctors then and i got told it was anxiety and to try and relax but back then i didnt think it could be pernicipus anemia i still get tinnitus now it never went away,i will go back next week like she said and i will mention this site and will try and get a print out of the petition as i dont have a printer and hopefully the silly doctors will start to listen instead of dismissing or blaming anxiety all the time
helen1978
 
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Joined: Sun Jan 27, 2013 8:20 pm
Location: England (leicester)

Re: helen1978s story

Postby kimks mom » Mon Jan 28, 2013 2:34 am

Hi Helen and welcome,

Please don't let a doctor ever stop your injections again. Fight to keep your treatment. Along the way, I think you will have to help your mother as well because she should be treated. There are doctors who can treat an allergic reaction to hydroxo by using another B12 serum or allergy desensitizing treatment to hydroxo.

Andrea mentioned folate levels. This is very important because you need an optimal level of folate for the B12 to work properly. The topic below explains why you need to get copies of test results and the importance of folate and ferritin (iron storage) levels:
viewtopic.php?f=2&t=10704

You should also have your thyroid level checked because of your mother's diagnosis. There is a close link between PA and hypothyroidism. Achlorhydria (gastric acid secretion or low stomach acid) is the common element between the two diseases. Low stomach acid will interfere with the absorption of B12. The tests that should be done are TSH, Free T4, Free T3 and thyroid antibodies.

As for the weird brain zap feeling, PA affects the nervous system so it wouldn't be unusual the zaps you are experiencing could be caused by low B12. There is a condition called L'hermittes which is caused by low B12 wherein electric-like shocks extend from the neck down the spine, particularly when you bend your neck forward to look down at your feet or try to touch your chin to your chest. The impulses don't extend to the brain though.

When you do get copies of your test results, you can copy them on here and we will help you with them.

Regards,
Pat
I am a support person for my daughter who was diagnosed with PA and Folate Anaemia in 1994, at the age of 27. Another daughter diagnosed with Hashimotos 2010 but she doesn't have PA.
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Re: helen1978s story

Postby helen1978 » Mon Jan 28, 2013 2:45 pm

well i managed to get to see another gp today and they seemed to be worse than the last gp i told this gp my symptoms and also about me being a new member on this site i also told him the bloodtests i should have and he said "you came here last week with the same thing and i garantee you the symptoms you are having is down to the low vitamin D you will feel better soon if you just carry on with the vit D supplements" then he said i am having sufficient treatment to the pernicious anemia i also asked him for a print out for the last tests i had and he said if you are not happy with the treatment you can always register with another practice but must warn that it will still be the same treatment all this is making me sick with worry i just dont know what to do anymore i really do give up with them doctors now :(
helen1978
 
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Re: helen1978s story

Postby helen1978 » Mon Jan 28, 2013 5:30 pm

Yes they said my calcium was fine and that i was just low in vit D
helen1978
 
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Location: England (leicester)

Re: helen1978s story

Postby BeeNumber12 » Mon Jan 28, 2013 8:17 pm

Helen, hello and welcome to PAS.
I just want to let you know I had years of brain zaps, loud popping sounds and they were well above my neck, in my head. I also had the electric shot like symptoms all over my body, even as recently as a month ago in my legs. Low levels of vitamin b12 can cause this: LHermitte's sign is often the first symptom of B12 deficiency.

Please look under the diagnosis and treatment section for instructions on how to request your medical records in the UK. You have every legal right to them and the doctor has no right to refuse to give them to you. About the suggestion that you go elsewhere for help, he is probably right that you will receive the same level of treatment and probably the same level of ignorance about the neurological dangers of B12 Deficiency. While you are looking into the other topics on PAS, look at those about self injecting, buying b12 and needle sizes a so you can become familiar with the idea of self treatment. It may be your only way to get well. Unless you find a doctor pretty soon who will increase the frequency of your injections. If you ave trouble absorbing vitamin D from supplements, you might also think about getting it from Cod Liver Oil -lemon flavor is not too bad. :) Calcium is the one electrolyte that is almost never out of range and if it is the cause needs to be investigated. Good wishes to both you and your mother.

Dorothy

Medical Records http://www.nhs.uk/chq/pages/1309.aspx?c ... goryid=160
Neruopathy (Neurological Damage from B12 DEF) http://www.mcvitamins.com/neuropathy.ht ... tesSurgery
Regards,
Dorothy
Please independently check any information or advice, by reading from or questioning reputable sources, before acting on it.
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Re: helen1978s story

Postby helen1978 » Tue Jan 29, 2013 8:26 pm

I forgot to mention that in regards to what kinksmom said about never letting a doctor stop my treatment about 5 years ago i had a bloodtest because of a operation i had for a root canal that went wrong and ended up having a drain under my chin which caused a throat closing sensation that in the end one of the doctors not my gp(this was when my gp was at the practice then before he suddenly passed away) but worked in partnership to my gp at same practice put down as globus hysterus not sure of spelling caused from stress of operation well they thought at first it was my thyroid so had b12 checked as well but when the results came back that same gp but not my own gp said my thyroid is all fine but my b12 was high and they wanted me to come off the injections well i ended up going to my own gp about the injection and he wanted me to stay on them i am worried about the future incase that happens again and they do take me off because my gp is no longer here to help me out like he did to keep me on them even though i had a feeling he didnt no much about pernicious anemia he managed to keep me on them but now he is no longer here what if that was to happen again and they did stop them, in a way im worried i dont get tested regular but in another way im worried a blood test would say it was high again if i was tested regular so in a no win situation
helen1978
 
Posts: 219
Joined: Sun Jan 27, 2013 8:20 pm
Location: England (leicester)

Re: helen1978s story

Postby kimks mom » Tue Jan 29, 2013 9:48 pm

Hi Helen,

If a doctor tries to stop your injections again, tell him to look at the BNF guidelines because it does say that treatment for PA is injections for life.

A diagnosis of PA/B12 deficiency means you have to learn to be more pro-active about your health. If all else fails, you can involve PALS, which may not be a bad idea considering your mother's situation.

Regards,
Pat
I am a support person for my daughter who was diagnosed with PA and Folate Anaemia in 1994, at the age of 27. Another daughter diagnosed with Hashimotos 2010 but she doesn't have PA.
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Re: helen1978s story

Postby helen1978 » Wed Jan 30, 2013 9:27 am

well i am going to try and get a afternoon appointment today as i woke up with a really bad bout of brain zaps and they are still happening,i have to ring at 11.00 to get in for the afternoon,i still think these zaps are related to my pernicious anemia so i am wondering if anyone has advice how i can convince the doctor that maybe it is the pernicious anemia, i got told on the 21st to go back in 2 weeks if the zaps continue but i cant wait till the 4th feb these things are really scarey knowing it could be lhermittes sign i am a nervous wreck knowing that if i get a appointment i will get the same telling off that i am getting sufficient treatment and so and so but i cant live like this knowing i am probably getting nerve damage so any advice would be helpful
helen1978
 
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Location: England (leicester)

Re: helen1978s story

Postby helen1978 » Wed Jan 30, 2013 12:15 pm

i manged to get in for later this afternoon but again its with a locum,i dont really know anyone who can come with me as they are either working or its the time of school run the only one was my dad but he is picking my daughter up for me,this morning i was actually thinking of going urgent care just to see if they would take all this serious but then thought no they would probably be just as ignorant or not know anything about pernicious anemia and just tell me to see gp
helen1978
 
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Joined: Sun Jan 27, 2013 8:20 pm
Location: England (leicester)

Re: helen1978s story

Postby helen1978 » Wed Jan 30, 2013 5:47 pm

well another wasted journey she put the brain zaps down to virtigo and said the pins and needles and tinnitus are probably a viral bug thats suppose to be going around but i did get my last blood test results i had done on the 15 jan which are as follows

serum sodium level (XE2q0) 140.0mmol/L (133-146)
serum potassium level (XE2pz) 4.1mmol/L (3.5-5.3)
serum urea level (XM0lt) 2.5 mmol/L (2.5-7.8)
serum creatinne (XE2q5) 52.0 umol/L (60-120) this one says below range
GFR calculated abbreviated MDRD (XaK8y) <90.0 mL/min/1.73m*2)
ALT/SGPT serum level (44G3) 15.0 iu/L (2-53)
serum bilirubin level (44E) 8.0 umol/L (<= 21.0)
total white blood count (XaldY) 9.1 10^9L (4.11)
red blood cell count (426..) 5.16 10^12/L (3.9-5.6)
haemoglobin concentation (Xa96v) 15.2 g/dL (11.5-16.5)
haematocrit (X76tb) 0.458 (0.37-0.47)
mean cell volume (42A..) 89.0 fl (80-99)
mean cell haemoglobin level (XE2pb) 29.5 pg (17-32)
platelet count-observation (42P) 273.0 10^9/L (140-400)
neutrophil count (42J) 5.89 10^9/l (1.5-7.5)
monocyte count-observation (42N) 0.46 10^9/L (0.2-0.8)
Eosinophil count-observation (42k) 0.31 10^9/L (0.04-0.4)
basophil count (42L) 0.12 10^9/L (0.02-0.1) this one says above range
lymphocyte count (42M) 2.29 10^9/L (1-4)
nucleated red blood cell count(4266) <0.2 10^9/L (0-0.2)
serum albumin level(XE2eA) 49.0 g/L (35-50)
corrected serum calcium level (44IC) 2.32 mmol/L (2.2-2.6)
serum inorganic phosphate level (XE2q4) 0.96 mmol/L (0.8-1.15)
serum alkaline phosphatase level (XE2px) 66.0 iu/L (30-130)
serum vitamin b12 level (XE2pf) 429.0 ng/L (220-700)
serum folate level (42u5) 10.3 ng/ml (2.6-17.3)
serum ferritin level (XE24R) 161.0 ng/ml (10-420)
serum vitamin d level (XE2e7) 33.0 nmol/L (less than 15 nmol/L severe deficiency
15 to 25 nmol/L deficiency
25 to 50 nmol/L insuffiency
<50 nmol/L adequate)
haemoglobin A1c level (X772q) 5.2% (4-6.1)
haemoblobin A1c level-IFCC standardised (XaPbt) 33.0 mmol/mol (20-43)
helen1978
 
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Re: helen1978s story

Postby helen1978 » Wed Jan 30, 2013 6:31 pm

i am so glad they are ok it has made me feel so much better so the zaps cant be from pernicious anemia, i must admit that no i havent been doing much exercise lately i normally just hybernate away when its winter and come summer i am always on the go and outside doing something and walking for miles but the allergy one i dont know as i dont suffer allergies
helen1978
 
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Location: England (leicester)

Re: helen1978s story

Postby lozza » Wed Jan 30, 2013 8:34 pm

Hi Helen,

I agree with Andrea, results are ok - Low Vit D will make you feel tired ( i have the same problem as well) lots of aches and pains in my legs, difficult when you have the PA as well, i guess it is probably both causing problems.

regards

Lozza :sunny:
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Re: helen1978s story

Postby helen1978 » Sat Feb 02, 2013 8:56 am

After reading more on here about zaps possibly being lhermites i understand theres pain as well, i dont get pain from it, i can remember having the same thing when comming off antidepressants 2 years ago and the brain zaps lasted about a month then went away,i been trying to look brain zaps up and alot of things come up about antidepressant withdrawel and anxiety can cause them and also something to do with serotoning so maybe its because i am anxious i am getting them but theres definetly no pain with them,i have been very anxious and panicky lately because of the pernicious anemia i didnt know much about it at all then getting a laptop and going on the internet and reading all about it and finding out what it can do has really scared me i didnt even know your not supose to drink alcohol which i always have a few shandys at the weekend and a few times i have gotton really drunk especially at new year i really wish i didnt have this i have had this for 12 years never knew much about it,lived my live normally and now im truely scared of it i now thank god for this site as we all have the same thing and i know i can talk on here but at the moment i am feeling scared ad depressed about it all i am scared for my children too though they are not showing signs of anything now but one day they might and with doctors being clueless about it im scared my kids may die from it, my friends mum as had pernicious anemia for years and always had her jabs every 3 months she has now got alziemers which scares the hell put of me knowing the pernicious anemia most probably caused it, i am sorry for sounding like a fool but i am petrified and just want my old like back :(
helen1978
 
Posts: 219
Joined: Sun Jan 27, 2013 8:20 pm
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