New here

Hi

I am new to the PA forum and HU. I am 26 years old and I have other health problems (hypothyroid diagnosed in 2011) but so far as I am aware the results of this are normal. I am trying to get to the bottom of the cause of these symptoms:

Tiredness

Weight gain

Cold hands and feet

Sweating a lot

Pins and needles in legs, feet, arms, hands and fingers

Breathlessness

Dizziness

Clumsiness

Bumping into walls

Stumbling

Lurching to one side when standing upright

Losing balance

Tremor

Broken sleep

Loss of libido

Muscle cramps in legs

Joint stiffness

Loss of stamina

Feeling cold

Muscle pain

Joint pain

Loss of appetite

Constipation

High blood pressure

Heavy periods

Poor focusing

Double vision

Puffy eyes, face, feet and ankles

Difficulty swallowing

Dry mouth and

eyes

Memory loss and confusion

Poor concentration

Mood swings, depression, nervousness, anxiety

Random ringing and rumbling in ears

Deafness

Dry, flaky, coarse, pale skin

Itchy skin

Muscle spasms

Burning

sensation in chest and throat,

Burning sensations down thighs

Numb sensations up lower legs

Poor circulation in legs, feet, hands and arms

Dry/chapped lips

Mucus buildup in throat

Bruising

Pain/fullness in ears

Pain in lymph glands in neck

Results for B12 and folate are below. I am due to see a haematologist in a couple of weeks about these.

! Serum Vitamin B12 - 186 pg/L (190 - 900)

! Serum folate - 2.35 ng/L (2.50 - 19.50)

Any help regarding the above results/symptoms would be appreciated.

8 Replies

oldestnewest
  • You may or may not have P.A. Annamarie1 but your test results show that you are B12 and Folate deficient and it would be good for you to try and work out why you may be so.

    Who’s at greatest risk for B12 Deficiency?

    Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

    Vegetarians, vegans and people eating macrobiotic diets.

    People aged sixty and over

    People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

    People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

    People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

    People with a history of eating disorders (anorexia or bulimia).

    People with a history of alcoholism.

    People with a family history of pernicious anaemia.

    People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

    People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

    People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

    Women with a history of infertility or multiple miscarriages

    .

    Obviously you can rule out age but maybe you can identify with some other "people".

    If your doctor has the test results has he/she suggested that you have B12 and Folate supplements/injections? Given your list of symptoms you should be treated in accordance with the BNF Guidelines per the below:

    Treatment of cobalamin deficiency

    Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

    Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.

    The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

    However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment

    I am not a medically trained person but one who has had P.A. for 45 years and I'm still "clivealive" at 75.

    I wish you well.

  • Thank you, I assume I have something going on in my body due to an elevated MCHC in a complete blood count but this is being repeated. I don't eat a lot of meat; I no longer use PPIs (I stopped them in May); I have had 3 surgeries but no idea if nitrous oxide was used; I had an eating disorder in January 2013; I have been told that despite deficient ferritin I don't have anaemia; I am being investigated for coeliac; I have some other autoimmune problems (no idea what they are) but I have positive antibodies for all sorts of things; I have been told I am infertile as well.

    No the GP has not offered me supplements for folate/vitamin B12.

  • I think at the very least your doctor should give you a trial of B12 injections until your symptoms have improved and prescribe a course of Folic Acid to take once the injections start.

  • Clive has given you good advice but I also think that it would also be a good idea to get a print out of your last thyroid results... as I am sure you know, the symptoms are very similar. Sometimes doctors tell us they are okay when they are not.

  • Annamarie1 - can I just ask - are you seeing a rheumatologist for investigation, diagnosis and treatment of your autoimmune conditions? If not, ask to be referred to a rheumatologist, since they are the specialists who deal with autoimmune problems.

    There is a large cross-over of symptoms in many autoimmune conditions and also with B12 and folate deficiency - both of which you have - so it might be difficult to sort out exactly what symptoms are due to what. However, you will need treating for each individual condition so that you can recover your health - so it's vital that you push for diagnosis and make sure that a) you are told what you have and b) the treatment that will be prescribed and c) who will be responsible for your continued care (this might be several teams if you have conditions spanning different specialities - not unusual for lots of us folks here).

    Clive alive is right - you need treating for all three of your proven deficiencies: B12, folate, and ferritin. Certainly, a lot of your symptoms could be due to B12, folate and ferritin deficiencies - but having other autoimmune will make the symptom 'picture' quite complicated. Once you start treatment with B12 injections, it might be a good idea to monitor your symptoms by keeping a symptom log - you'll be able to see which symptoms are relieved by the treatment-and also spot the point at which symptoms may reappear again - main ingredient that you probably need another B12 injection.

    If you have a read of the PAS pinned posts to the right of this page when you log on, they will give lots of useful information about diagnostic and treatment guidelines, together with a symptoms checklist for B12 deficiency.

    This might seem very overwhelming at first, especially as your feeling so ill at the moment. B12 deficiency and/or PA (moot point which 'cause the treatment is the same - B12 injections) are complex conditions but it is possible to become your own expert so that you can help,your doctors to help you. In the meantime, there are some very knowledgable folks In the forum so post as many questions as you like and someone will always pop along to try and help.

    Very good luck and we look forward to hearing how you're getting one 😀

  • Always love your input - clivealive.

  • All good advice above. The symptoms also sound like the thyroid is not working properly too. Strong cross over symptoms and connections with b12 deficiency.

    Are you taking Thyroxine or man made thyroid meds to help. Natural desiccated thyroid meds work much better with lots of folk. Are you on the sister thyroid site on here.

    Good luck in a complicated health problem.

    M😀

  • My advice to you is to be as persistent as you can in getting a diagnosis asap. Take someone with you to appointments if you are not being taken seriously.

    Like you, I became ill at 26 and was fobbed off by GPs with "stress" (because after the umpteenth appointment I finally burst into tears) despite intense acute crippling pain in my spine which prevented sleep and movement; inability to walk upstairs, plus many of the symptoms you mention in your post.

    Fast forward through my lifetime quest, or "journey" towards health, which involved every complementary therapy you can imagine, on the basis that if I was not "ill" then I must have hidden emotional issues that were in some mysterious way causing me to be chronically unwell. About ten years ago I became much worse again with migraines and vomiting almost daily, and many of the symptoms you describe worsening too.

    Guess what the diagnosis was this time? Not stress but menopause: a "natural process" which "we don't treat". So in effect, I still have whatever it is/was, but still don't have a diagnosis, other than possible M.E. which as we all know means "I don't know what is wrong with you".

    I do have B12 treatment however, and that has brought about a lot of improvement after the initial lightbulb moment, as has eating gluten-free.

    My point is that if you don't get the right diagnosis and treatment now, you will struggle to get treatment in the future as well.

You may also like...