My name is Rachel and I am 24 years old. In the last 3 months I've been diagnosed with pernicious anaemia, as well as endometriosis and coeliac disease. It's been a pretty tough few months as I have has a laparoscopy for the endo, 2 weeks of loading doses for the pernicious anaemia and have adapted to a gluten free diet for the coeliac. I have to say that I have generally been feeling lots better - gone are the bloated stomach, abdominal pains, disorientation and unbearable nausea that were present every day before my treatment. However, over the last week I seem to have taken several large steps back, I've been utterly exhausted, unable to keep much food down And joints aching so bad I haven't been able to bring myself to get out of bed.
The doctors assured me at the time of treatment for the pernicious anaemia that by the time the loading doses were finished I would feel fine again and gave no advice on how to cope with the illnesses long term, making me think they symptoms would be minimal if present at all.
I have spoken to the doctors again today who gave me no useful advice again and simply offered a sick note. I love my job and I hate being off sick so I turned this down immediately. That seemed to be the only thing she was willing to do for me and the phone call (that's all I was given) was quickly ended.
So my question to you all is - what do I do?
Why do I suddenly feel so terrible again after so much progress? Am I doing something wrong? Should I be doing more?
Sorry for the long post! And I look forward to any advice you can give
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Bumblebee90
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I have read a lot of post on the PA?B12d Facebook site that are similar to yours. Have you joined this group? You will find it very helpful if not. From what I have read, it seems that it takes much longer that the first loading doses to be well...they bring your b12 up, but it can take 3-6 month to begin to feel better. Also many do still feel ill for a time, but the ill times gradually reduce and the well times increase. Also how often do you receive the injections of b12? If you are on, or can join, the FB page, repost this and see what those who have suffered say as well. My daughter has been having the injections for four years, three of those 7 weekly, and it is not enough for her symptoms to completely go, or stay away. She is redoing the loading doses and gradually lengthening the time between jabs to see where she needs them. We do not yet know reason for her b12d.
I would say that 12 weeks apart are very likely not often enough.. So a lot of research and ask a lot of questions. Then you will probably know a lot more than the GP. Knowledge is power
Keep a diary of your symptoms in relation to the timing of top ups.
Not aware of any scientific basis for the 3 month regime - nearest people seem to get is a study in the 1960s that said on average hydroxo was retained twice as long as cyano but it also clearly showed that it was not possible to generalise this and significant numbers of people actually retain cyano longer than hydroxo.
In germany the recommended period for maintenance shots is 4 weeks.#
Despite the fact that all the NHS advice says that it is rare for people to need B12 more than once every 3 months (unless neuro symptoms in which case once every 2 months) I've yet to come across anyone who doesn't actually know next shot is needed well before the 3 months so you certainly aren't alone and it's a real shame that this isn't recognised in guidelines.
The reason I'm asking is that the treatment for PA or B12 deficiency with neuro symptoms is more intensive than for those with PA or B12 defic. without neuro symptoms.
Your GP should have a copy of the BNF (British National Formulary). The relevant info is in Chapter 9 Section 1.2. The BNF is copyrighted. It is possible to buy your own copy.
My understanding is that people with PA or B12 deficiency who have neuro symptoms should have an injection every two days until they stop improving so that might mean you get loading doses for several weeks or even months. After you stop improving it's an injection every two months.
How many loading doses have you had?
"The doctors assured me at the time of treatment for the pernicious anaemia that by the time the loading doses were finished I would feel fine again"
Sadly this is not true for many sufferers. The PAS will probably tell you more about this. Some people, especially those who waited a long time for diagnosis may have some permanent damage. Some people just don't do well on the standard treatment. I know of people who can cope on the standard every three months injection and people who inject several doses a day. It's a very indiviual thing.
These books are well worth a read, in my opinion.
Pernicious Anaemia; The Forgotten Disease by Martyn Hooper
I'd encourage you to google the "BCSH Cobalamin and Folate guidelines" which your NHS area should probably be following.
It's a bit of a slog to read but full of useful info. Have a look at page 29 which is a diagnosis flowchart. The PAS have a summary of this document in the library section of their website.
"Why do I suddenly feel so terrible again after so much progress? "
Some people experience a worsening of symptoms after starting treatment. Is your GP monitoring your folate and ferritin as well as your B12? You need good levels of all of these.
Some people have a problem with a drop in potassium levels (Hypokalaemia) when starting B12 treatment. Has your GP chekced your potassium levels?
I found it helpful to get paper copies of all blood tests especially folate , ferritin , B12 and the full blood count. I learnt through experience not to assume everything was normal even if I was told it was.
Hi Bumblebee, hopefully they tested ferritin and folate when you had your B12 blood test done. These also need to be at optimum levels for your B12 to be used by your body. At the start, some symptoms will initially get worse, I think because the body is suddenly flooded with B12. It struggles to use it, and nerve endings that have been starved of B12 come back to life, a bit painfully at first. When you had the laparoscopy did you have full anaesthetic? This will deplete your levels even more. I suggest taking a good Bcomplex supplement, and keep a diary of your ongoing symptoms. That way, if you need to persuade the GP you need more frequent injections, you will have proof of continuing symptoms. Best wishes MariLiz
You should have had a blood test after your loading doses to see if there had been any improvement in your levels. Although the test is not particularly reliable it could give an indication that further injections were needed.
Mariliz makes a good point about the laparoscopy. Some drugs and medicines can affect the uptake of B12 in the body. I found it helpful to check whether other medicines I was taking, might be affecting B12 uptake. I'm on asthma medication which I found out affects uptake.
On the bright side, you are young and it seems you got your diagnoses in one go, so you have some clarity
I have endo (dx at 27) and celiac and b12 def (not sure if PA, dx 31). I had laparoscopy and started going downhill after it, like you describe. I also had a lot of psych symptoms. It was a difficult and bewildering few years. It's good to have some diagnoses.
It's challenging because you have multiple issues to contend with at once and they intertwine.
As I learn more about these diseases it seems they tend to co-occur. There are plenty of women out there dealing with celiac, endo, interstitial cystitis, thyroid disorder, metabolic syndrome/diabetes, malabsorption/multiple vitamin and mineral deficiencies, adrenal insufficiency and hormonal issues, and other autoimmune disorders. I'm not saying you have all of those, I'm just saying there seems to be this general emerging picture of related illnesses in some people. I was diagnosed by an excellent endocrinologist who was able to connect all of these pieces. If you want I could explain what he told me.
All of your issues may take several months to heal. But it is concerning that you feel yourself getting worse. If you concentrate on getting yourself the best care in each aspect it would be good. You may wish to see an endocrinologist and be checked for other autoimmune diseases just in case.
For the celiac, you probably know to make sure your lifestyle is 100% GF, including personal care products and guarding against cross contamination. Even shared utensils can cause a reaction. Many people need to go dairy free as well. What with the surgery and celiac and PA I would imagine it likely you are deficient in some vitamin and minerals. I'm not necessarily advocating for mass supplementation (that gave me some imbalances and side effects!). Often as celiac damage heals you start absorbing better. I'm also not qualified to recommend any tests, but I would imagine your drs would want to test for other deficiencies like iron, folate, magnesium, etc etc.
For the endo, I very much hope the surgery worked well for you. It sounds like you have responded well. Should you need more information, the book "Stop Endometriosis and Pelvic Pain" By Dr. Andrew Cook is an excellent source written directly for the patient. Another good source is endopaedia.net by Dr. Redwine (retired). Both doctors are endo specialists.
As for the B12 def and loading doses, so many of us have symptoms and feel we're not getting enough B12 despite our doctors' protocols. I'm still trying to figure that out myself but there are a lot of good sources here!
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