Hi guys my daughter was in well about 5 years ago with severe pains in the stomach couldn't find anything wrong and eventually they went in and had a look and found she had adhesions nothing more was said or done at that time .but at the beginning of this year she had the same issue and was in severe pain after a lot of Back and forth to the hospital They kept saying there was nothing wrong eventually we had to go Private and it turned out she had adhesions and endometriosis after surgery solely her life started to return to normal but then she started to feel extremely exhausted all the time and even after afull night night sleep she would need to sleep for several hours during the day after a blood test at the doctor turned out she had and B12 deficient and has five injections so far and last one is on Friday she still does not feel any better looking at all the symptoms and causes of B12 I think that maybe it was the Surgery has caused the deficiency I have several questions if you don't mind me asking should she not be starting to feel a bit better by now? Or how long will it be before she does start to feel better? And if it was the surgery that has caused the deficiency is it possible that she will make a full recovery and and will no longer require the injections? Although she has been told she will need them for lifeshe has been unable to work and I wonder if she will be able to return to normal working hours ? Any help and advice would be greatly appreciated thank you
B12 deficiency and endometriosis - Pernicious Anaemi...
B12 deficiency and endometriosis
The endometriosis could be a symptom of a B12 deficiency that has been bubbling around in the background for a while. If she had nitrous oxide as an anaesthetic then that will have rendered her remaining supplies inactive.
Unless it is clear that the deficiency was lack of B12 in her diet (she hasn't had any meat/dairy/fish or fortified cereals for a long time then the deficiency will be caused by an absorption problem - number of possibilties) so injections will be for life (though there are some alternatives if needles are a big problem but they don't work for everyone).
Your daughter should have noticed some improvement in symptoms but exactly how long things take depends on your daughters metabolism and what symptoms she has - if she had neurological symptoms that went untreated for a significant time then they may not get better. Many people don't really notice much for 6 months - so second maintenance shot - some notice things very quickly - and for some things actually get a bit worse before they get better.
Best you can do is go through a checklist of symptoms and see what is improving and monitor that way.
pernicious-anaemia-society....
Gambit62, I know it has was years ago that you posted this, but I came across this and felt that I needed to reach out to you. When I was 24 years old I had a full hysterectomy. I was diagnosed with endometriosis at age 18 extremely painful condition that in 1993 no one could figure out why I was in so much pain and quite honestly they did believe me at first. So in 1998 is when my body finally took a turn for the worst. A cyst wrapped around my my left ovary cutting off the blood supply and caused the ovary to die. It was like this for a year before I could get doctors to figure out why I was in so much pain then they decided to proceed with the hysterectomy and that is the day started believing me when they found that ovary was dead they felt bad that for an entire they did not believe me about the pain and thought it was all in my head. As soon as I had the hysterectomy I felt 100% better. Then in 2001 I slow started feeling tired all the time, by 2002 I started to become more forgetful. Next thing I know it is 2005 and I spent all of that time fatigued, brain fog, getting lost when I went out, mood problems and then came the worst I was having hallucinations, paranoia and delusional thinking. By 2010 I was bed ridden most days, barely able to walk and even speak, numbness and tingling throughout extremities. I was sent to every type of doctor and everything came back negative as the were checking me for lupus, lime disease, multiple sclerosis and etc. everything came back normal that they checked for. I started becoming progressively worse as my CBC blood work started showing problems with red blood cells and still doctors could not figure it out. Then in 2012 my family doctor decided to run a simple vitamin test for b12 level. There it was my level was 121 and the normal level to sustain life should be no lower than 450. That is when I received the news that I had a b12 deficiency. Then they immediately told me to start taking b12 supplements pill form for six months. Nothing changed with my level or my symptoms. This is when they immediately started me on b12 injections and after about two weeks to a month of getting the injections the brain fog started to lift and then over the next six months or so I was able to walk better balance problems were not as severe my mood was stabilizing, but something still was off with my memory and concentration/ cognitive thinking. So my neurologist scheduled me a two and half hour test with the neuropsychologist, that’s when I was diagnosed with early onset dementia caused by a b12 deficiency. That is when my neurologist started me on Aircept 5mg . My memory started to improve even more little by little. That when they told me it might be reversible early onset dementia. The doctor said he would put me on the Aircept for one year and then take me off to see how I do without it. That year came and two months after I stopped the Aircept all the memory problems came back quickly with a vengeance. That’s when he said the damage was permanent and I would need the Aircept and b12 injections for the remainder of my life. I have b12 deficiency with early onset dementia but at least I am still alive to tell my story. If helps one person than it was taking the time to share.
"she had and B12 deficient and has five injections so far and last one is on Friday"
Is she due to have maintenance injections as well?
What symptoms does she have? In the UK ,people with B12 deficiency where there are neurological symptoms, should get an extended period of loading doses then maintenance injections every 2 months.
Symptoms Lists
b12deficiency.info/signs-an...
pernicious-anaemia-society....
See PAS Symptoms Checklist. I gave a copy of it to my GPs with all my symptoms ticked.
UK B12 treatment
1) See page 8 in "BCSH CObalamin and Folate Guidelines"
2) See Management section in next link for info based on BNF (British National formulary) Chapter 9 Section 1.2
patient.info/doctor/pernici...
UK B12 Documents
Recent docuemnts make it clear that people who are symptomatic for B12 deficiency should be tretaed even if b12 blood levels are normal range.
1)ukneqas-haematinics.org.uk/...
2)bmj.com/content/349/bmj.g5226
3) Google "BCSH Cobalamin and Folate Guidelines". I gave a copy of this to my GPs.
UK B12 websites
pernicious-anaemia-society....
PAS tel no 01656 769 717
fbirder has a useful summary of mainly UK B12 documents which I plan to give my GPs. Link to summary in this old HU thread.
healthunlocked.com/pasoc/po...
B12 books
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. This book is up to date with UK guidelines.
"Could It Be B12" by Sally Pacholok and JJ. Stuart. A very comprehensive book about B12 with lots of case histories.
Other useful links
Causes of B12 deficiency
b12deficiency.info/what-are...
B12 tests
b12deficiency.info/b12-test...
b12deficiency.info/what-to-...
Unhappy with treatment?
b12deficiency.info/b12-writ...
Link about nitrous oxide
She does not appear to have any Other symptoms apart from stomach cramps and pains that she is extremely exhausted all the time she can get up in the morning after a full night's sleep and when she has had a shower and dried are here she is exhausted again . she has her last loading injection on Friday then every 3 months after that but we are going to see the doctor on Friday to see if she would need an extended Loading time
Exhaustion and fatigue can be found in people with B12 deficiency.
Has she noticed any changes in balance? Ability to think clearly? Is she more clumsy than in the past? Any aches and pains in joints, spine etc? Strange noises in ears? Mood swings? Pins and needles and/or tingling anywhere?
B12 deficiency can develop very slowly and subtly so that some people put the changes down to aging. Untreated or inadequately treated B12 deficiency can lead to permanent neurological damage.
Has she ever had tests for thyroid problems? Coeliac disease? the symptoms of these conditions can overlap with those of B12 deficiency.
coeliac.org.uk/coeliac-dise...
I am not a medic just a person who has struggled to get a diagnosis.
One of the most useful things I learnt to do was to always get copies of all my blood tests after finding out that what i was told was normal was not always normal when I got copies. In relation to B12 I look closely at B12, folate , ferritin, full blood count(FBC).
Folate, iron and B12 work together in the body. There can be useful clues on the FBC. I look particularly at MCV and MCH. High MCV and high MCH can indicate the possibility of macrocytosis (enlarged red blood cells). Macrocytosis can sometimes be found in someone with b12 deficiency and/or folate deficiency.
patient.info/doctor/macrocy...
labtestsonline.org.uk/under...
"she has been told she will need them for life"
If she has been told she will need injections for life then I wonder if the GPs think she has an absorption problem. Has she had an IFA ( (Intrinsic factor Antibody) test which can help diagnose PA (Pernicious Anaemia). The IFA test is not always reliable, people may still have pA even if IFA test is negative.
So much good advice for you. I agree with sleepybunny and think the thyroid should be tested too. I have Hashimotos and have been on the Thyroid UK forum here on HU for 4 years. I often read about Endometriosis and Thyroid in the posts. Sadly the testing for thyroid can be far from efficient - so do ensure the correct testing is done.
TSH - FT4 - FT3 and Thyroid anti-bodies - Anti-TPO and Anti-Tg. Due to cutbacks only the TSH is tested - and this is far from the full story. Your GP can report everything is normal and you can be sent on your way with the declaration ringing in your ears - it is not your thyroid.
Low B12 is so often linked with low thyroid - so have the tests as suggested above too - Ferritin - Folate - Iron - and VITD. All need to be optimal for your daughter to feel well.
Do not accept normal from your GP - having copies of your blood test results is your legal right. Important to monitor our own health.
thyroiduk.org.uk/tuk/testin...
The link above takes you to a chart to help understand thyroid test results and everything else you need to know about the thyroid ......
Hope your daughter soon finds some answers.
healthunlocked.com/search/e...
The above link takes you to other conversations here on HU about Endometriosis and Thyroid - also B12 .....
She had been getting regular blood tests and had been told they were normal before she had been diagnosed with endo it's only recently they found the b12 was very low at 130 today she is feeling dreadful !! cold with a headache and unable to function normally because if she tries to do anything she is exhausted just having a bath has been too much today and I think she is depressed as she is wondering if this is what her life is going to be like she is only 24
Hi there, when I had my loading doses it was at least two weeks from my last injection before I started feeling a bit better. Then I seemed to improve quite rapidly over the next few weeks, now when I have my top up jabs I feel the relief instantly. There are some brilliant people on here and there advice is "gold" I think it impacts us more as a parent to see our children suffering, I hope you daughter starts to feel better soon. Best wishes
Thank you all for your help and advice we went back to the doctors and he is going to do more blood tests to see if the levels of other things have changed since topping up the b12 as a couple of them were low end of normal before so will be getting it done on wed next week
"She had been getting regular blood tests and had been told they were normal"
Like Marz, I would say think carefully about accepting results are "normal" unless a copy of results is in front of you. Some people in the UK can access results online. Your surgery should be able to tell you if this is possible for you and your family.
There are people on this forum who have discovered that in the past they were diagnosed with PA (Pernicious Anaemia) but at the time were never told. Some people on the forum get a complete set of medical notes from their surgery..think this costs at least £50. Getting paper copies of blood tests normally involves a small charge per sheet.
If blood tests were done at a hospital it can be much more difficult to get copies..could involve a visit to hospital's record office.
"I think she is depressed"
B12 deficiency can cause changes in mental health including depression.
Has her GP explained why she needs B12 for life?
It might be worth looking through this site for the supplements most people find essential with this condition. I think a good B Complex is essential and will help your daughter's mood. Might be worth a try. Good luck.
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