I need help with my own diagnosis please: Typical PA or something else?

[Pandora22]

I am now 22 years of age (Portuguese-African female) and was first diagnosed with iron anemia when I was 15/16 years old. The very first blood test that confirmed that diagnosis, stated that I had 5.2 g/dL. Needless to say I struggled a lot with memory issues (really badly), tiredness, nausea, heavy periods, loss of appetite, hair, basically all of the typical iron anaemia symptoms, you name it I had it. I was then put on a course of iron tablets 2 a day and was also introduced to the pill in order to control my menstruation. My periods were so heavy that I would go through 5 heavy pads a day. I also changed colour, my hands and feet are really pale with dark knuckles and I am now so much lighter in skin tone my cousins thought I had bleached my skin. I also had and still have really sudden and bad mood swings, I just preferred being miserable on my own and became depressed.

The tablets did help, the levels increased, but they never got the "normal" range stage, so since then I have always been on prescribed iron medication. Two months ago, all of a sudden the symptoms returned and worsened, even with naps I would wake up even more tired. I had a lot of gas, would feel full after just 5 minutes of eating and would get extremely bloated, and my bowel movements would change (constipation, then normal). Also my eyes started to get blurry, constant headaches, memory loss and I could not do any of my university work, so much so that I am now repeating the year. My clumsiness worsened, I sometimes got kidney pains, really horrible acidic taste in mouth, extreme night sweats (I would be dripping with sweat), tight chest and indigestion.

The first diagnosis that I received after the doctors examined my tummy was IBS. Afterwards I went for my routine blood tests and it came back that I had Microcytic Anaemia, although it did not state the cause, therefore, I had to go for another blood test, which then revealed that I have Pernicious Anaemia. The doctor was so shocked that even though the reason for the B12 anaemia was not known (I am not a vegetarian, I eat a normal diet, it does not run in the family although my mother has a very mild case of iron anaemia and a distant cousin has Sickle Cell), she immediately started me on B12 injections every 2 days for 7 weeks.

The injections were painful as hell, but I did see some improvements. For instance, I did not feel the need to have naps during the day (I always used to have to), my digestion problems slowly subsided (only had indigestion symptoms 2 times), I only felt nausea on the days that I received injections, my vision was clearer, no night sweats, my memory and concentration improved, I was able to run and not feel although someone was sitting on my chest, I would regain my breath much faster, so as you see was a big improvement. The only negative was that I started to get acne on my face, chest and back (quite mild), and there was one week that I missed my injections, and I felt so weak all of a sudden and I got ill straight after.

I think I have covered everything. All I am asking is another opinion on the symptoms please. Does this sound like a normal case of PA?

THIS IS REALLY GROSS! I APPOLOGISE!! But one day I even passed a massive lump of mucus –jelly like-instead of faeces! At one point I even thought I had crohn's disease or celiac disease, but the doctor has not mentioned anything about it. As I have just finished the pilot B12, I am due for blood tests tomorrow and that might come back with some answers, but I am just so lost! I already feel the differences since coming off the injections 2 weeks ago, most of the symptoms are back to the same extent and I feel as though I’m back in square one.

Apologies for the essay and many thanks in advance, if you need any extra information, please feel free to ask.

[nostoneunturned]

The symptoms you describe - headaches, bloating, indigestion, memory and concentration affected - can be ascribed to neurological involvement. You also have lost already much of the benefits the loading course of injections brought you in the releif of your symptoms.

Please remember that I am not a doctor, but I do wonder whether you are being treated correctly for your PA as there are two modes of treatment by injection described in the British National Formulary, if you are in the UK the BNF will apply to your treatment.

In the BNF in Section 9.1.2 Drugs used in megaloblastic anaemias, under the paragraph headed Hydroxocobalamin it says:

Dose

By intramuscular injection, pernicious anaemia and other macrocytic anaemias WITHOUT neurological involvement , initially 1mg 3 times a week for 2 weeks, then 1mg every 3 months.

Pernicious anaemia and other macrocytic anaemias WITH neurological involvement initially 1mg ON ALTERNATE DAYS UNTIL NO FURTHER IMPROVEMENT, then 1 mg every 2 months.

The capitals are mine in order to emphasis the differences, please take note also that the treatment sequences differ and that the first bit ends "every 3 months" and the second bit "every 2 months" . Sorry for labouring the points but I know how fuzzy-headed PA can make people.

You can go to:

b12d.org/book/export/html/43

where you can read the above BNF extracts for yourself and also print them out. Or you can go to:

bnf.org

and burrow about there for half an hour as a visitor, just sign in etc., head for section 9.1.2 via "9 Nutrition and blood" then: 9.1.2 Drugs used in megaloblastic anaemias, and read more there.

There is also on the above b12d site an exhaustive list of symptoms and information on body systems affected which might make you recognise many more symptoms you might not already have related to PA and these will bolster your case to have your PA recognised as having neurological symptoms and therefore the other treatment.

I suppose you are a member of the Pernicious Anaemia Society? They have a mine of useful information and interesting forums plus a helpline accessible by members, you can join online.

pernicious-anaemia-society.org

Don't apologise for seeming grossness in the last paragraph - now at last I realise that particular symptom, never as bad as yours, but noticeable, has gone! So you taught me something!

[Pandora22 in reply to nostoneunturned]

Thank you so much. Ill have a read and will keep you posted.

[nostoneunturned]

How about giving the results of your blood tests, plus the relevant reference ranges, please, for you should have been tested for serum B12, folate, ferritin and had a full blood count (FBC) run. Doing this can help us help you.

[Pandora22 in reply to nostoneunturned]

Thank you so much for the reply. Ill be having my blood test done tomorrow and will get back as soon as I get called in. Thing is that I don't actually get to see the results this time, only the doctor does, this is why I what I know about my levels is purely by what she tells me. Thank you so much I really appreciate it.

[nostoneunturned in reply to Pandora22]

It is your right to have copies of the blood tests, you know, if you ask for them. It is your body, not the doctor's!

[editfmrt]

You will get nowhere with these GPs unless you take control of your own health. Sorry to be blunt but there are too many people receiving totally inadequate treatment because of the total lack of knowledge of the medical profession. The sooner you come to the realisation that you are unlikely to get the right treatment the less chance there of more damage. You will have to get educated so that you can direct your own treatment. It's hard fighting these doctors but not as hard as letting them make your health even worse.

The first step to getting control is to politley and firmly insist you are given copies with reference ranges of all your blood tests. Nostoneunturned above has given you excellent advice. I would strongly suggest you join the Pernicious Anaemia Society. There is a small registration fee but it will be the best money you will ever spend. You need help with this and quickly before things get worse or there is permanenet damage. They can give you all the help you need and people on the forum will support you and point you in the direction of extra help.

I know I sound harsh but you are too poorly to let this drag on. I am dusgusted with the apparent flippant way you are being treated.

Good luck

[Pandora22 in reply to editfmrt]

You're not being harsh. I really appreciate you're honesty and will make sure to join the society. Thing is I think I have something else besides the PA, but I will make sure I will insist with the GPs because you're quite right, when it comes to diagnosis they're not really thorough.

[editfmrt]

This journey of self diagnosis is a difficult one. I'm not a doctor but have had to do loads of research to help my sister who has been really ill for six years but we are now making progress with diagnosis. PA can either be a deficiency caused by malabsorbtion or bad diet or true PA which is an autoimmune condition. Many autoimmune conditions can go hand in hand and many have overlapping symptoms. You can also have more than one making it a minefield. Yuo do have lots of PA symptoms.

I just know that if I was you (and remember I'm not qualified) I would be looking at:

Autoimmune Thyroid including Hashimoto's which can make you hypothyroid and often precipitates lots of the others - if you have had this and it can go undiagnosed for years, it causes all sorts of problems and can affect all the organs and cells in the body - along with malabsorbtion leading to vitamin and mineral (iron) deficiencies, heavy periods (more iron loss) and digestive problems. There is a healthunlocked forum for UK Thyroid whihc might be worth exploring.

Cealiacs - another autimmune and often misdiagnosed as IBS - contributes to malabsorbtion.

And then B12 deficiency

The good news is they can be treated and you can get better. Take one thing at a time but you must not ignore the PA.

Take care.

[Raoy]

Vitamin B12 58.2µg 480%

Folate 691µg 173%

healthaliciousness.com/nutr...

healthaliciousness.com/nutr...

[Hidden]

Hi there Pandora 22:

You seem like a sister to me. First of all, I am also of Portuguese descent, through my mother's side and in 2002 found out through DNA analysis that my mitocondrial DNA

gotten from her came from one line in Africa. My father was British, the family line going back to 1650. Have you ever looked at your blood type? Mine is B RH Positive and several relatives in our the British side are also B RH Pos, which is a dominant type. If one is RH Positive the blood cells carry antibodies/antigens that cause havoc in the stomach, with their "intrinsic factor". I was a very allergic child, hives, food allergies, etc. practically raised with liquid Benadryl. Always very weak, too sensitive. Reading your description of your malaises reminded me of my own. I currently follow a diet containing no foods with "lictens". Had no idea that they could irritate my stomach, and also totally eliminated grains, rice, and potatoes. Actually, all of the "nightshare family" as well, which includes tomatoes, eggplants, and sweet peppers, all staples in my "healthy" diet.

Guess what? the stomach pain and bloating slowly receeded and disappeared, this is my fifth month following this diet. Because I have microcytic anemia and do not absorb iron from pills well, I stocked up and consumed non-heme iron rich foods: all types of nuts, lentils, etc. Lentils and beans are high in "lictens", so are cashews. I switched to heme-iron foods, and eliminated chicken meat also high in lictens, but stuck to lean meat, turkey, and salmon. The diet for Blood type B said to have originated from nomads in Tibet and Mongolia who followed herds is basically meat and milk. Guess what? I digest tenderloin stake very well, and am waiting my blood work results from last week. Milk that I did not take for years took a bit longer to adjust to, but am pleased to report now having two glasses a day.

You should try ordering "Ferramax" iron pills made in Canada. It is in the format of polysacharides, pellets contained in gel cap, that can be taken whole or stirred in liquid. It has no side effects, believe me, and from the initial 150 mg I upped to 300 mg, ensuring it is taken two hours before or after any calcium rich food, coffee or tea, even green tea, for tanins counteract the iron absorption.

Another member replied to you suggesting you keep copies of blood work. I do the same, and keep track of results. My doctor never paid attention to high B 12 levels, it bothered me, and it was by searching the Net that I came across the B 12 truth. That type of B 12 that is shown in CBCs is the total B 12 in the pool, BUT NOT the B 12 actually in the body.

Check out the reply to my question by Marre. That particular test is available in labs in the UK, and I am attempting to locate sources here in Canada to have it run. My B12 in my blood work always come up on the high side. Then I will consider how to supplement: sublingual or via injection.

On another front but also very important is the work of Dr. Abraham Hoffer on vitamins in the 1950s. The website is called Orthomolecular Medicine, and contains detailed instructions on the importance of the B vitamins with specific instructions on how to use. I tried B3 (niacin) following his instructions and managed to up daily intake to 6,000 mgs in one week, a definite improvement to the brain fog, and watching improvement to determine what level to stay at. He strongly suggests vitamins to improve the myelin sheat.

It is amazing how much I was able to gather with just four weeks devoted to searching the Net. Recently I told my sister that I wish I had studied to become a doctor instead of a lawyer, for it seems to be natural to listen to the body and review material then ask questions and locate applicable answers.

I feel I have the right to a better life than the life I lived so far, despite all my efforts at getting better on my own with no doctor ever understanding my complaints. The muscular degeneration that no doctor could address caused me extreme stress, I am the same as another member who reported lumbar scoliosis and lordosis, DDD (degenerative disk disease), and suffer muscle spasms always on the left side of the body. These spasms come on their own, sometimes while I am asleep, and are so strong that the joints fall out of place and wake me up.

I hope that my narrative will help you and others continue their quest for better lives. I have spent so much time and money in so many ways, homeopathics, etc. etc. Back to the basics it appears to be the best course. Plain vitamins, plain food, cooked from scratch, only olive oil and lemon juice for seasoning, plus plenty of fresh parsley.

To our good health,

mashby