Help Me!!!

Allergies, blood and immune system
1

Hi...

I'm a 37 year old women who has felt like she has been hit by a bus for the last couple of years!!

I Initially likened how I was felling to having an infection or virus hanging over me all the time but after Various Dr's appointments, hospital referrals and blood tests nothing bar a few recurring urine infections and low iron has ever been found...

Due to how long this has been going on it's caused me to become very anxious and depressed and I must have diagnosed myself 20 times over!!

The GP's have tried various times to put me on anti anxiety meds and I think they would like to pop me under the anxiety induced symptoms umbrella which has made me stop going to the docs and as I don't think they are taking me seriously...

Since having my daughters I have always suffered from low iron/ferritin levels but the last time I had them checked (about 6 months ago) I was very plainly told that at the level they were at would not be causing the symptoms I was having. (prescribed 320g of ferrous furrate twice a day, iron level at 11) Again I felt really unsupported and haven't been back since..

I am now back to the drawing books as feeling particularly lousy and starting to wonder (after doing a bit of reading on how rubbish GP's seem to be with Anaemia) if Pernicious Anaemia and B12 is something that should be checked!!

I have all my classic low iron symptoms, breathesness, extreme tiredness, insomnia, white eyes but wondered if anyone else with the above can relate to my slightly weirder symptoms and reassure me I'm not going crazy.

Dizziness...this is a weird one as always used to get in the same place, the school gate, my 3rd daughters bedroom, folding the washing!! Wasn't until recently I have connected it with really bright colours and patterns, it's like my brain goes into overload with looking at a busy/bright scene.

Weird mouth sensations...mostly always brought on by wrigleys airways chewing gum, mouth goes completely numb, leading onto feelings off extreme dizziness, nausea and just oddness

Thumb on left hand feels lazy, when I reach for something, it's like it's not connected with what my brain is asking it do and takes a few seconds to catch up.

Small twitches above on the top of my lip, eyebrow, and ocassionally eye, doesn't feel very serious, and it goes as quickly as it comes but still there!!

Underarm, breast bone and rib cake sensations no lumps or even enlarged lymph node just a feeling, sometimes feels muscular and other times feels almost topical like a mild scratch or burn.

Random onsets in my Jaw, neck and shoulders where I feel like I have had 6 rounds with Mike Tyson (actually reminds of the days after giving birth when your hole core aches from the pressure and tensing...

Joint pain in my fingers and toes. 

Frequent urination, feels like uti symptoms (possibly is but I'm avoiding the unsympathetic Doc!!) 

And probably the worse...all consuming anxiety with I'm sure magnifys a few of the above but mostly just paralyses my ability to do anything about them other than scrutinise and worry...because well what's the point, nobody listens!! 

2

Hi, I was diagnosed in Oct 17 with B12 deffinancy. I was prescribed six injections over two weeks then one three monthly also folic acid for a year. I had felt unwell for so long like a virus that kept recurring. Horrendous weirdness, weakness, feeling faint, joint pains, falling over, eyesight affected. I might get a few good days here and there but not many. I had various tests etc but nothing bar vitamin D showed up until they tested for b12. It was a relief as I felt as if it was all in my mind sometimes and I know some people just thought I was lazy and weak. I did feel a bit better after initial injections but then hit a slump. As doctor will only give three monthly injections now, I self prescribe and currently take it every three days. I am still not right but feel as if I'm making progress. Go back to your doctor and insist you are checked for b12. I do feel for you

3

Hi LuluRose, 

These do sound as though they might be symptoms of low B12. I used to tell my husband that I felt as though I’d been trampled by a herd of wildebeest during the night. I would wake up aching from head to toe, a bit like the flu. 

Do you also have debilitating tiredness/exhaustion, pins and needles, and any loss of balance?

High levels of anxiety, twitches, muscle weakness can also be symptoms. 

Is there anyway you can persuade your doctor to do a blood test for B12, ferritin, folate and VitD? He has treated you for low iron in the past, but it hasn’t solved your problems. All these need to be in balance as they work together, so if one is low there is a good chance the others are out of whack too. 

Try cutting caffeine out of your diet to see if that helps the frequent urination, I’ve gone away from coffee and onto decaffeinated tea, and it helps. 

Good luck and and I hope you will get some answers from more testing. 

4

Hi Lulu Rose

Your symptoms could definitely be vitamin b12 deficiency. Also get your thyroid checked and consider Peri menopause . I started having symptoms just after my 3rd baby , 3.5yrs ago . My gp is also very unsympathetic and cuts me off when I try & list my symptoms. If basic bloods don’t show up something , he dismisses you & dare you mention google etc !I had vit b12 injections but they haven’t relieved my symptoms , they did initially but not for long . My gp is also trying to go dwn the depression/anxiety route. I did an FSH twice (follicle stimulating hormone test) which confirmed I’m peri menopausal. I’m 39. I’ve had heart,lungs checked and they are clear . I’m going to an endocrinologist in the next couple of weeks after being referred by a lovely,understanding  cardiologist who listened intently to my symptoms and said I needed to be seen, he’s thinking auto immune or thyroid issue. I could of cried I was so grateful to him. Don’t give up hope. My symptoms are palpitations, shortness of breath like I can’t take a full breath and my neck feels tight,3 day migraines twice a mth,eye & lip twitching , sore tongue , shoulder ,arm,wrist & knee pain,Joint pain in fingers, tingling in toes & fingers & up the side of my face on one occasion , nausea, light headed, feeling off balance, forgetting & mixing up words when talking , heartburn ,can’t lift my hands above my head , horizontal ridges on my nails , all half moons on my nails have disappeared, feeling of cystitis but no infection present , acne ,spotting between periods & for few days before & shortened cycles. Some days are worse than others & over last 3-4mths I’ve recorded all symptoms on a calendar & some appear to be connected to ovulation or menstraul cycle. I really feel for people when they have drs / gps who dismiss them as depressed or anxious . I find these online groups re assuring that we’re not going crazy ! I know my comment is probably if no assistance but just incase any of it is similar to your situation, you’ll know you not alone ! I hope you get well soon xx

5

Thanks all...

Yes the exhaustion is all consuming...My husband is wonderful but I know it would easy to look at me with no formal diagnosis and say I'm just lazy...which I'm really not!! Sometimes I feel like I'm in a cloudy bubble looking out at my lovely little life and I just can't get through the fog to enjoy it....very frustrating!!

Pins and needles often sometimes with a chill feeling almost like a window is open directly on my skin...

We have just moved from Scotland to England because of my husband's job so obviously registered with an entirely new system and Dr, I'm hoping that it will count for something and someone will listen!! 

What I have found through various forums and obviously my own experience is that deficiency symptoms are unique in not only what they are but also at what level they occur...It's ok for my previous GP to brush off my previous iron level as too high to cause any symptoms, but surely that depends on my own body and how it works...rambling but sick of being fobbed off!!

I'm going to be a little more forceful in my results next time and get a print/copy of levels rather than just trusting that I'm fine so obviously all in my head!! 

6

Could your husband/friend go along with you to appointment. It's a simple test so no reason doctor should refuse. It's great your husband is supportive. B12 is a serious condition so don't be put off, u have a right to feel well

7

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.Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

Weakness and fatigue

Light-headedness and dizziness

Palpitations and rapid heartbeat

Shortness of breath

A sore tongue that has a red, beefy appearance

Nausea or poor appetite

Weight loss

Diarrhoea

Yellowish tinge to the skin and eyes

If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

Numbness and tingling in the hands and feet

Difficulty walking

Muscle weakness

Irritability

Memory loss

Dementia

Depression

Psychosis

As well as B12 it is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

 I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well