I have PA that was finally diagnosed 7 years ago. I was on 12 week B12 and the past couple of years 8 weeks.
My story briefly 2002 pneumonia in hospital 2 weeks HB Low. Wouldn't come back up and I had no store of iron. I had an Iron infusion. Muddled through being monitored. Had to have another iron infusion in 2004. Again carried not brilliant had an ablation of the womb to hopefully stop me having to have Iron infusions which did to ab extent. 2008 came when everything went terribly wrong.
I was exhausted had respitory issues that were put down to chest infection and plurasy. Would not go away so referred to hospital and had a tumor in my thymus gland. This was removed but I was not recovering after surgery. I had no energy and was referred back to deseases where I was diagnosed with PA. started B12 and had to have another Iron infusion, other test to see what damage had been done to stomach but luckily ok. They paralized my left vocal cord removing the tumour and I have to have ongoing surgery to maintain as have issues with swallowing so Jan cut the esopagus nerve. Been tested for different neurotically issues.
Well in May I had to have hysterectomy as I was issues and this was my best option.
I am alway ready for B12 at 8 weeks and alway pick up after it. But this time I didn't. My bloods in July were just in normal range. I went to the doctors a couple of weeks ago as I was so exhausted and couldn't cope and was sleeping over 12 hours at night uninterrupted and a good 2 1/2 hours in the day too. I was and still in a daze if I try to do anything extra at work, home or go out. I have had more blood test which I know will not be any different from July but the doctor is ruling out other things as he suspects that I have fatigue syndrome !!! I went to see if moving B12 to 4 or 6 weeks might improve my symptons.
Been on anti depressants for a couple of years or so. All I would like is to be able to go to work. Look after my family and have a small social life. It seems I get over one hurdle and straight away get another issue.
I am going back to doctors tomorrow for verdict. Is there something that I am missing I can ask or do before getting another diagnoses that I don't really know how it will affect me in years to come.
Any one else in similar case to me?
Written by
SallyFoulger
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I really would suggest that you join the PAS and contact them.
Martyn's latest blog may be of interest to you - although this is all a bit too late for an appointment tomorrow.
Levels of serum B12 when you are being treated with shots are not significant unless they come back low - but I would say that coming back just in range is definitely low for anyone who is on shots. Your GP needs to be aware that they cannot treat you based on blood test results but also need to look at clinical presentation - I would suggest trying to use the UKNEQAS warning but that relates more to diagnosis that monitoring during treatment.
Anaemia is a symptom of B12 deficiency but is not a defining characteristic
There are materials on the PAS website that are likely to be useful - including a section aimed at health professionals
Do you know what anaesthesia was used during your hysterectomy. If nitrous oxide was used then it will have inactivated your B12 so it will still show up on tests but cells won't be able to use it to do the things that they need to do so you might actually need loading shots all over again. If you mentioned PA to the anaesthetist before the operation though this is unlikely.
- also if you were on any chemo therapy afterwards there are some that really interfere with folate so if you aren't supplementing your folate levels are likely to be really low and most of the processes in the body that use B12 also need folate. I would definitely ask what is happening with your folate levels at the moment. Courses of some antibiotics can also affect your body's ability to process B12 if they were used after the hysterectomy.
Want to scream at the CFS - its frequently a B12 misdiagnosis and has he actually done test to show that it is CFS or is he just using it as a convenient excuse. To be honest B12 sounds much more likely. Not going to rule out CFS but at least make sure that it is being diagnosed properly ... and that your GP is aware that CFS/ME patients do actually respond to treatment with B12 because of the role it plays in maintaining the protective sheath around nerve cells so it could be an effective treatment for ME.
Also a chapter in book "Could it Be b12" by Sally Pacholok and JJ. Stuart about effects on B12 levels of nitrous oxide. Nitrous oxide is also mentioned in Martyn Hooper's book"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"
When you were first diagnosed with PA how many loading doses did you have? Do you have any neurological symptoms?
My understanding of UK treatment is that people with PA who have neurological symptoms should have loading injections every 2 days for as long as symptoms continue to get better then injections every 2 months.
Has your GP read the BCSH Cobalamin and Folate Guidelines? I gave my Gp a copy plus a copy of Martyn hooper's book.
Page 8 of the BCSH Cobalamin and Folate Guidelines has details of UK b12 treatment. It's also in the BNF (British National formulary) Chapter 9 section 1.2. GP is very likely to have a copy of BNF on their bookshelf.
"as he suspects that I have fatigue syndrome !!"
My experience of getting chronic fatigue/CFS/ME/fibro as a label is that investigation into other possible causes stops once a person has this diagnosis. There are quite a few on the forum who have had a diagnosis of chronic fatigue prior to finding out they are B12 deficient.
Chronic fatigue can be a symptom of b12 deficiency and I have read that patients with b12 deficiency are often misdiagnosed with CFS/ME etc. Of course i believe it is possible to have CFS and B12 deficiency at the same time.
I am getting confused as I know that I am B12 deficient have injection every 8 weeks. I am understanding that if they boost them to every 2 days my symptons could improve?
The link I posted above suggests that you symptoms may well improve.
Whether that's because you have CFS and CFS responds to frequent administration of B12, or it's because you don't have CFS and your B12 deficiency responds to frequent administration of B12 is immaterial.
The hard part is trying to persuade your doctor to allow you more frequent injections.
Hi Sally, you mentioned an ablation and that just set bells ringing for me.
I assume you have had your thyroid tested. I mean, properly tested, not just TSH levels but FT4 & FT3 as well.
I had problems with my monthlies and was offered an ablation a few years before my Thyroid problems were diagnosed, I was also very iron deficient although nowhere near as bad as you.
If you get copies of your blood test results check back to see if you have any thyroid results
Normally doctors tell you that anything in range is normal but that isn't the case. They should be optimal.
TSH should be around 1 (if it is high in range your thyroid is struggling)
I agree with Singoutloud about having the complete Thyroid Profile tested. I would also add anti-bodies - Anti-TPO and Anti-Tg. Always important to rule out underlying causes. If your practice does not test the T3 - which is the most important thyroid hormone - then you can have the whole Profile done privately through Thyroid UK - with Blue Horizon ....
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