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Help please, new diagnosis

Vix22 profile image
7 Replies

I'm 42 years old with hypothyroidism- this time last year I was feeling fabulous! My levothyroxine was slightly reduced and slowly I started to feel my thyroid symptoms reappear. I wasn't thinking as clearly as I had been anyway a few weeks ago I had noticed I felt incredibly exhausted, I didn't feel as though my 'inhale' was as full as it should be and over the last couple of weeks have found it almost impossible to stay awake at work. Well today I went back to the docs (this is following a liver blood test a week ago) to tell them how I felt after feeling dizzy with tiredness at work and my concentration is seriously affected They told be that I am vit b12 and folate deficient and I am starting injections tomorrow- I don't know if this is pernicious anaemia but I'm concerned that I'm only 42 - how bad is this?

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clivealive profile image
clivealiveForum Support

Hi Vix22 Your having thyroid problems may have put you at an increased risk of developing a Vitamin B12 deficiency and the symptoms you mention fit.

Do you know what number of injections you are going to be given and whether you will be prescribed folic acid supplements?

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

Vix22 profile image
Vix22 in reply toclivealive

Good evening! Thank you for responding! I'm having six injections over two weeks starting tomorrow and folate following this, I'm also being treated for a fungal nail infection (this was only discovered after blood tests for kidney and liver functions to decide if they were healthy enough to treat) I've had (what I believe) to have candida on my tongue since they diagnosed me with hypothyroidism as they were treating me for chest infections and it never went away. I don't know if this is related.

clivealive profile image
clivealiveForum Support in reply toVix22

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, or infections such as h-pylori 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.

Can you "see yourself" among any of the other people above.

The injection frequency is standard procedure for B12 deficiency and you will probably have a "maintenance dose" some twelve week later. Note that the loading doses should continue until there is no further improvement in your symptoms so keep in touch with your doctor.

You should start your Folate supplement the day after your first injection.

Just for your information: It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having injected starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

I cannot comment on your nails, candida or chest infection as I am not medically trained but I look forward to seeing how you get on.

Goodnight

Vix22 profile image
Vix22 in reply toclivealive

Thank you again for your reply, I have hashimotos thyroid disease so maybe it is connected. Had my first injection this afternoon - my muscles feel tender! I asked about the folic acid supplement starting and the nurse couldn't tell me. I have my next injection Monday and I'm seeing the dr again with a list of questions. I'm wondering if I'm not absorbing b12 then is there other vitamins I'm not absorbing - am I absorbing levothyroxine? I was also going to request a gastroscopy - what do you think? My PA blood test is next Thursday. Thanks again for your most gratefully received advice.

clivealive profile image
clivealiveForum Support in reply toVix22

Remember I am not medically trained but as I understand it the processing of B12 takes place in the Ileum (right at the bottom end) whereas other vitamins and minerals are absorbed higher up the digestive system. For example, Iron is absorbed in the Duodenum, most other nutrients in the Jejunum.

Best speak with your doctor about you worry about absorption.

I'm a bit concerned that you are having an injection on Monday and "P.A.Test" on Thursday, when a wiser person than I has previously commented on this forum, "For testing intrinsic factor antibodies: keep one week between an injection and the test"

Vix22 profile image
Vix22 in reply toclivealive

I understand that you are not medically trained but appreciate that you have no doubt educated yourself on the condition. Yes I've had my first injection today, second Monday, third Wednesday and blood test on Thursday. My symptoms seem to have worsened quite rapidly in the last month or so - is that usual? Are there questions that you think I should be asking?

clivealive profile image
clivealiveForum Support in reply toVix22

I would perhaps query the efficacy of having the IFA test so soon after the B12 injections.

Of course it is entirely possible that you don't have P.A. anyway

Treatment for PA and non-dietary vitamin B12 deficiency is virtually the same.

The symptoms of PA are the symptoms of the B12 deficiency that it causes.

If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life.

Are you able to eat meat, fish, seafood, eggs, poultry and dairy produce as it is from these foods that we derive Vitamin B12 naturally.

I don't honestly know how it can be determined whether you have an absorption problem or not other than by "curing" an infection such as h-pylori or having a condition such as Celiac, Crohn’s, or IBS .

As always, adequate treatment depends on the underlying mechanism causing the problem. People with pernicious anemia or inflammatory gut disorders like Crohn’s disease are likely to have impaired absorption for their entire lives, and will likely require B12 injections indefinitely. This may also be true for those with severe B12 deficiency causing neurological symptoms.

As far as I can remember you have only a thyroid problem about which I know nothing other than it may put you at risk of developing a B12 Deficiency. Hopefully once the B12 injections have raised you levels back to normality you may only need three monthly "maintenance" injections.

Please come back and let us know how you get on.

Goodnight for now.

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