Glover's 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.

Moderators: Missy, hampster, martyn, coryad, BeeNumber12, kimks mom, Vix, AndreaM, japatchett

Glover's Story

Postby Glover » Thu Sep 29, 2011 3:30 pm

Hi All

I am 32 years old, female and have just been told that I may have PA
About 2 years ago I went to my GP as I was experiencing pain in my hands and feet - I was told this was arthritis, not uncommon for my age and to treat as required with anti-inflams

Since then I suppose I just 'got on with it'. I continued to experience pain, sometimes making life very difficult. I was very tired, but put this down to a very busy, pressured job (which I love - but its hard!)

About six months ago the pains got worse, I was always exhausted, couldnt sleep at night for hot flushes and felt like a zombie. I was grumpy, depressed, and felt like my body just wasnt in tune with what my brain wanted it to do

I went back to my surgery and saw a new GP. Several blood tests later nothing was showing so I was referred to a Rheumatologist and it was he who asked for a B12 test.

This showed as 154. My GP contacted me and put me straight on a B12 loading course (6 in two weeks). That was 4 weeks ago. Week two of the jabs, and the two weeks after that were great. I had enough energy to exercise, I was sleeping at night and had NO PAIN! Then a week ago I crashed, three weeks after the end of the jabs

Went straight back to the GP who immediately said get a blood test done and have another injection - which I had Tuesday

I havent felt any improvement from that, and am confussed as my B12 test done just before the jab has come back at a massive 1100

I had been looking at this web site, so I asked the GP to test Folate and Ferritin at the same time
Folate 9.9 ug/l
Ferritin 116 ug/l


I have gone from feeling great, and on a high to at least understand what was going on and treat it, to confused about whats going on and what I have in store

Its been great reading other people's stories and feeling like I am not alone and that its not in my head! Would be great to hear anyones thoughts

thanks

Glover
Glover
 
Posts: 17
Joined: Thu Sep 29, 2011 3:13 pm
Location: Somerset

Re: Glover's Story

Postby sunnysmiles » Thu Sep 29, 2011 3:42 pm

Welcome to the Group :sunny: I hope that you can get the help that you need from this group and also the treatment that you need. Its very confusing .
sunnysmiles
 
Posts: 17
Joined: Fri Sep 23, 2011 6:43 am
Location: England

Re: Glover's Story

Postby anotherwithpa » Thu Sep 29, 2011 4:14 pm

Hi Glover,

Welcome here!

It is possible you used up your B12 to much by over doing it, it can take time for the body to get all bloodcells sorted with the renewed supply of B12. I remember going back tp GP saying are you sure you got this right, its doping nothing, but some 3 months later I realy did feel a lot better. Make suire you rest and eat well, look after yourself, it does take time to replenish the body and to replace all faulty bloodcells.

It also is worth having thyroid function and antybodies tested as the symptoms you describe can also be caused by hypothyroid etc.

It helps if you read up a bit and learn as much as you can about PA I found, it helps to understand what is going on, perhaps read this:
http://www.patient.co.uk/showdoc/40001009/

I hope this helps,
Kind regards,
Marre.
anotherwithpa
 
Posts: 4795
Joined: Thu Jan 01, 1970 12:00 am
Location: Hants

Re: Glover's Story

Postby Glover » Sat Oct 01, 2011 2:52 pm

Thanks for that link, I am trying to read as much as I can so that I feel a little more in charge of all this!

Went back to the GP as have had loads of pain in my feet again which, along with the hot flushes, is keeping me awake.

I have to admit that my GP seems really nice against some of the others people on here talk about

He felt that although I have high B12 in my system at the moment, that doesnt mean that my body had had chance to do everything it needs with it. He has written to my Rheumatologist to advise him of my reactions to the injections and get his feedback too.

He also believes that I have low Vit D and should try supplements for that at the same time

I get little red spots all over the tops of my feet and up my legs - GP said that this is blood leaking to the surface from inflammation in my legs and feet - anyone else get that? Not very nice looking, especially in this shorts weather!
Always seems to follow a bad spell of pain

I think I have been tested re Thyroid but not really sure so I am putting results here for any assistance in translation!

I have entered the range, and then my result so I hope they make sense


thanks all
FBC - Haemaglobn estimation 13.2 (12 -16)
FBC - Total white cell count 10.6 (4.2 - 10.8')
FBC - Platelet count 265 (150 - 400)
FBC - Mean corpuscular volume (MCV) 89.9 (80 - 96.5)
FBC - Mean corpusc. Haemoglobin (MCH) 30.9 (27 - 32)
FBC - Mean corpusc. Hb. Conc. (MCHC) 34.4 (32 - 36)
FBC - Red blood cell (RBC) count 4.29 (3.9 - 5.6)
FBC - Neutrophil count 7 (2 - 7.5)
FBC - Lymphocyte count 2.6 (1.5 - 3.5)
FBC - Eosinophil count 0.5 (0.02 - 0.5)
FBC - Monocyte count 0.3 (0.2 - 0.9)
FBC - Basophil count 0.1 (0.02 - 0.1)
FBC - Large unstained cells 0.1 (0 - 0.16)
FBC - Red blood celldistribut width 12.1 (11.5 - 16)
FBC - Haematocrit 0.386 (0.36 - 0.46)
Serum sodium 140 (136 - 145)
Serum potassium 3.6 (3.5 - 5)
Serum creatinine 79 (60 - 120)
Serum urea level 3.4 (2.5 - 6.6)
Serum bilirubin level 12 (5 - 17)
ALT/SGPT serum level 32 (0 - 40)
Serum alkaline phosphatase 49 (25 - 92)
Serum albumin 39 (35 - 50)
Plasma C reactive protein 2 (0 - 10)
Serum TSH level 1.25 (0.35 - 4.5)
Serum vitamin B12 154 (165 - 1000)
Serum creatine kinase level 223 (25 - 165)
Erythrocyte sedimentation rate 6 (3 - 9)
Corrected serum calcium level 2.25
Serum urate level 0.19 (0.12 - 0.42)
Serum calcium 2.22 (2.1 - 2.6)
Serum folate 8.7 (4.6 - 18.7)
Serum ferritin 116

Glover

(Edited to show result followed by ref. range)
Glover
 
Posts: 17
Joined: Thu Sep 29, 2011 3:13 pm
Location: Somerset

Re: Glover's Story

Postby Vix » Sat Oct 01, 2011 4:21 pm

Hi Glover
Just popping by to say welcome and also to say I also get loads of little red dots, not sure if they are the same as yours though they are small, bright red just under the skin. It looks like tiny blood vessels have burst. I mainly have them on my arms but also on legs and torso a bit.Have no idea what they are though.

After my loading doses I too crashed massively and had to get a private clinic to give me an injection after a month. Since then my sister has been injecting me sub cut every few days and only now four months later am I really starting to feel the benefit. It may not take that long for you but you do need to find a way to continue loading doses until you are able to cope.

The B12 level means nothing, mine was over 1500 when I finished my official loading doses but wasn't feeling any better at that point. In fact most people here need their level to be that high to feel well.

Good luck!
Vx
Vix
 
Posts: 1206
Joined: Sat Jun 25, 2011 1:46 pm
Location: England

Re: Glover's Story

Postby anotherwithpa » Sat Oct 01, 2011 4:48 pm

Hi Glover,

Its obvious from your bloodtest you were B12 def, re Serum vitamin B12, normal ref range: 165 - 1000 actual:154

To look up info on bloodtest results have a look at the links in this topic:
viewtopic.php?f=6&t=19
If you go to labtest online then put something like urea in their search etc to then find explanations as to what a low or high reading may mean etc.

TSH is thyroid and looks fine.

There are some other things not right, your pottassium is low (Serum potassium 3.5 - 5 3.6) and with B12 treatment an increased demand can be made on that low supply, so ask your GP if you should supplement or can just keep it up with high pottassium foods such as bananas etc.
Re:Serum creatine kinase level 25 - 165 actual 223, this is out, ask your GP for more info; I believe liver related, see
http://www.labtestsonline.org.uk/unders ... /test.html.
All other result look OK, particularly as you were found to be B12 def and with treatment there should be a rise in HB etc.


I hope this helps,
Kind regards,
Marre.
anotherwithpa
 
Posts: 4795
Joined: Thu Jan 01, 1970 12:00 am
Location: Hants

Re: Little Red Spots PETECHIAE

Postby BeeNumber12 » Sat Oct 01, 2011 5:15 pm

Regards,
Dorothy
Please independently check any information or advice, by reading from or questioning reputable sources, before acting on it.
BeeNumber12
 
Posts: 2939
Joined: Thu Dec 24, 2009 11:52 pm
Location: U.S.A.

Re: Glover's Story

Postby LethalLee412 » Sat Oct 01, 2011 8:31 pm

Serum folate 8.7 (4.6 - 18.7)

This is low in range too. Usual recommendation is to have that at least mid range & preferably high in range.

Could be that has dropped too.

It is a good idea to take a good B Multi plus a separate Folic Acid/Folate tab as well.

Your Doc suspects low Vit D, has he actually tested it?
LethalLee412
 
Posts: 35
Joined: Fri Aug 06, 2010 4:03 am
Location: Australia

Re: Glover's Story

Postby Maudy » Sun Oct 02, 2011 7:26 am

...and if he hasn't, it takes at least a couple of weeks (upto 6) for Vit d bloodtests to come back. So, you may as well get those shorts on and sit in the sunshine for at least 20 minutes in the hottest part of the day. No need to burn and you can use all the sunscreen you want at other times - but not in those 20 minutes!

It's the quickest and most efficient way of getting those vit d levels up!
Maudy
 
Posts: 909
Joined: Fri Mar 11, 2011 3:18 pm
Location: Not Scotland

Re: Glover's Story

Postby JDee » Sun Oct 02, 2011 5:20 pm

Both of my parents were diagnosed with PA. Mum is on 2 monthly injections and relatively OK. Dad progressed to dementia and sadly died 14/2/13. Despite my own levels being 'normal' I have some symptoms. Jac.
JDee
 
Posts: 2882
Joined: Sun Jul 27, 2008 7:25 pm
Location: Lancashire England

Re: Glover's Story

Postby Glover » Tue Oct 11, 2011 11:54 am

Thanks so much everyone for all your help, its great to get info from people who have experienced it and understand that I'm not just being lazy!

Have read through as much a possilbe and the more I learn the more in control I feel so thank you all

Have been making sure I eat pottasium high foods and generally trying to be healthy and have had two good weeks with no pain and generally more energy.

Today though I seem to have slipped back again. Am so tired and have that familiar fuzzy brain, despite sleeping better. I am about to go to London on business for two days, and my GP is on holiday all this week. I confess I am relucatant to speak to anyone else when he has been so understanding but I just cant help but think I need another jab :pale:

I am getting married 4 months today and I am desperate to be feeling more normal by then!
Glover
 
Posts: 17
Joined: Thu Sep 29, 2011 3:13 pm
Location: Somerset

Re: Glover's Story

Postby kimks mom » Tue Oct 11, 2011 2:49 pm

Hi Glover,

If your doctor is agreeable why not ask for another injection. I think it is so wrong that when newly diagnosed PA/B12 deficient patients are given loading doses they then are told to wait 3 months for another injection. Doctors need to understand the full amount of damage that a low B12 causes. The loading doses are just a beginning but it would be nice if the docs would continue to give injections at weekly intervals or sooner. This way a patient wouldn't have the dip such as what you are experiencing now.

You have had two good weeks with a bit more energy...that is a signficant improvement. It is very common to slip back and get a return of symptoms. A B12 injection would probably help with this. Make sure your folate level has not gone below what it was...a folate level of 8.7 is below the mid-range...that is not helping you at all and I would not be surprised if it was lower now. Ask to have it checked again and if it has gone down, consider supplementing with folic acid.

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.
kimks mom
 
Posts: 5760
Joined: Thu Jan 01, 1970 12:00 am
Location: GTA, Ontario Canada

Re: Glover's Story

Postby Glover » Tue Oct 11, 2011 3:40 pm

I booked a telephone conversation with the Duty Doc as mine is on annual leave

He has just told me that it is not appropriate treatment to have another injection a fortnight after my last, and that I shouldnt be having them any more than 12 weekly

His assesment was that I should wait and see my GP to 'properly assess' what the problem is as my last blood test showed levels over one thousand, therefore my body is 'saturated' with B12 and giving me anymore is pointless. in fact, he advised that I read the news in the press today that too many vitamins can actually shorten life spans and what I actually need to do is get to the underlying problem

I disagreed with him and described the improvement I feel having an injection, but he flat out refused and said it wasnt clinically appropriate

Super
Last edited by Glover on Tue Oct 11, 2011 4:03 pm, edited 1 time in total.
Glover
 
Posts: 17
Joined: Thu Sep 29, 2011 3:13 pm
Location: Somerset

Re: Glover's Story

Postby Maudy » Tue Oct 11, 2011 3:56 pm

Oh Goody - now we've got to take the word of the tabloids as being gospel. 'The NHS Sinks To All Time Low - my headline.

Maybe, instead of reading the Daily Rag, your gp would be much better informed if he read the bloody BNF GUIDELINES!!!!!

Oh Glover - just go get yourself some B12 and start injecting. Honest, it's the painfree route.
Maudy
 
Posts: 909
Joined: Fri Mar 11, 2011 3:18 pm
Location: Not Scotland

Re: Glover's Story

Postby BeeNumber12 » Wed Oct 12, 2011 3:37 am

Regards,
Dorothy
Please independently check any information or advice, by reading from or questioning reputable sources, before acting on it.
BeeNumber12
 
Posts: 2939
Joined: Thu Dec 24, 2009 11:52 pm
Location: U.S.A.

Next

Return to My Story

Who is online

Users browsing this forum: No registered users and 9 guests