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I don't think I know what is wrong with me

Slowmo19 profile image
10 Replies

Hi, I am here, newly registered.

I take B12 injections for functional B12 deficiency. So far as I know due to active monitoring since 2017 my level of B12 is fine but lately I have been developing problems relating to mental health which are worrying and bothering me. Though I will probably be passed off as some nut on here with everything fine with me, medically speaking.

I take vitamin D and folic acid too.

For some reason when people talk to me about something fairly straightforward, I lose my patience and don't want to speak to them. Normally I have the patience of a saint but this has now suddenly worn thin.

Tearfulness. Even the mention of something and I burst into tears at the drop of a hat.

Memory. I am unable to retain information, even passwords. I am in training for a new job and the number of times I have had password resets just beggars belief.

Concentration. So, so distracted, mixed up and intrusive thoughts. Again, this is causing major impact on me because I meant to be learning new things. Having disturbed concentration should not be happening right now.

Tiredness, fatigue. Sleeping a lot during the day. Oversleeping in the morning. Insomnia at night.

Bruising on legs. Don't know how, just always happens on my lower legs, on my calves and shins. Tender in some spots too.

Heartbeat. Goes fast, slow, fast, slow, fast, slow. Chest and jaw sometimes hurts but not at the same time, it isn't radiating.

Nails. Breaking easily, going a little spoon-shaped the more they grow. Splitting in the corners.

Periods. Heavy. Painful. Irregular, Early. Late. I am in my 30's, this shouldn't be happening to me.

I am fast approaching the time to just go to my GP and request some antidepressants.

Any advice on my bloods below would be appreciated. Thank you.

December 2019

Vitamin B12 1108 pg/L (190 - 900)

Folate 4.3 ug/L (2.5 - 19.5)

TSH 5.86 mIU/L (0.27 - 4.2)

Free T4 15.6 pmol/L (12.0 - 22.0)

Ferritin 22 ug/L (15 - 150)

February 2020

TSH 2.2 mIU/L (0.27 - 4.2)

Vitamin D 30.5 nmol/L

(<25 severe vitamin D deficiency.

25 - 50 vitamin D deficiency

50 - 75 vitamin D may be suboptimal

> 75 adequate vitamin D)

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Slowmo19
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10 Replies
Nackapan profile image
Nackapan

Hello. Sorry you feeling so ill.

On your bloods there some obvious out of range.

Is your doctor treating the low vit.d low ferritin.

I know little about thyroid problems but symptoms di overlap with b12 deficiency symptoms

Do you feel you are receiving g the right treatment ?

I know we are in a very difficult climate but tiu can get telephone consults and regular blood checks

Also referrals wont happen at present but see if you can get I to system

Others on here with understand your bloods better.

T C

Slowmo19 profile image
Slowmo19 in reply to Nackapan

Hi thank you. I take vitamin D 800IU, I really don't think this is helping me because it's barely gone up.

I don't feel like I am getting the right treatment at all. I was meant to be speaking to a GP today about how I have been feeling, mentally, because the thoughts are taking me away from my training. In the end I cancelled it, I don't want them thinking I am a psycho and end up being dragged kicking and screaming to a mental institution. Not that would happen, but I can't help but take on a cynical outlook on my life at present.

Sorry no, not taking anything for the ferritin, I was told that it was in range. Maybe I should push for treatment/more investigations?

Thank you again.

Nackapan profile image
Nackapan in reply to Slowmo19

Definitely keep tour next appointment.

I had prescribed loading doses for vit d. Then a maintenance dose of 25ug daily. To keep levels around 60 at least.

Ferritin although in range can dice symptoms below 50. Well documented . Again your doctor having all other iron results can prescribe

Also ask about thyroid

B12 deficiency can give psychosis if under treated.

Doctors will ask about tour mental health but you need to eliminate facts from bloods first.

Are you malnourished?

Have someone with you when you have your telephone consult on loud speaker. Ask them to explain tour bloods.

A diagnosis of functional b12 deficiency is a start.

Take care

Slowmo19 profile image
Slowmo19 in reply to Nackapan

I don’t really know if I’m malnourished...I don’t eat very much. I’m still a good healthy weight but I don’t gain very much and when I do gain weight it soon comes off.

I will try to get an appointment now.

Thank you.

suztango profile image
suztango

Your first TSH result suggests you have a problem with your thyroid. To get a better picture, you need to get the following tested before 9am and fasting:

TSH

FT4

FT3

Thyroid antibodies

The timing is really important as these hormones vary throughout the day eg TSH is highest in the early morning and lowest in the afternoon. Eating also reduces TSH. So that’s why it’s important to do this test before 9am and fasting.

You have only the TSH and FT4 results. FT4 is the storage hormone. It needs to be converted to FT3 which is the only active thyroid hormone. FT3 needs to be high in range for people to be well. Quite a lot of people have a conversion problem so they have a lot of FT4 but are low on FT3. This is why it’s important to get FT3 tested.

When you get the results, post them on the thyroid U.K. forum on here and people can comment.

Sunshine1932 profile image
Sunshine1932

Unless I read it wrong you dont say how many b12 injections you are having.

Your symptoms are exactly the same as what I was having and I'm 39.

I was on 1 injection every 3 months and my GP would not increase.

I was suspected as having MS and even lymphoma which obviously all came back negative

After the torment of being told nothing else could be done I started to self inject and after a wee while things started to settle down.

I self inject once a week and try to go to every two weeks but no joy so far.

I was tested for PA but it came back negative.

I hope this helps.

Davepolo profile image
Davepolo in reply to Sunshine1932

I was having one injection every 10 weeks stopped two weeks before my new one on the 8/5/20 told to take 100ug supplements I’m very poorly at the moment due to this

Cherylclaire profile image
CherylclaireForum Support

I would have thought that your folate and ferritin definitely need a boost, your vitamin D is too low, and I'm not surprised that you are struggling. What is your current B12 injection frequency ?

All of your symptoms sound familiar to me.

If your legs are bruising because you are bashing them and noso t feeling it, then you might have nerve damage related to B12 deficiency. Any numbness or tingling ?

Vitamin K deficiency can reduce blood clotting ability and so increase bruising- but it is rare. I mentioned it because you said you don't eat much. Perhaps you need to see a dietitian, to see if you can improve what you eat, in terms of vitamin intake ? Better than trying to remember tablets- especially when memory also suffering ! GP can refer you.

Since you mentioned heart arrhythmia (the fast/slow thing) and chest and jaw pain, I think you could do with a 24hr heart monitor to see what is going on.

This isn't to worry you, because numb legs and heart arrhythmia are likely to be about B12 deficiency- but just to eliminate anything else as soon as you can. Having said that, if your bruising has been a recent issue, you should see a neurologist as it could mean that your injection frequency is not helping repair any nerve damage. Don't let that worsen. Tell your GP about this.

I had a pounding heart that was increasing in severity and frequency- several times a day and waking suddenly at night- and it was found on monitoring to be ventricular ectopics: a problem with the signalling to lower part of the heart. This is not dangerous, can stop as suddenly as it starts, can be treated with betablockers (which I decided not to take)- and once you know that, is just uncomfortable. It is now getting better on it's own. Good to know what it is though.

How did your GP establish that you had functional B12 deficiency ?

I had B12 deficiency which was treated with loading injections. Then I became very ill when waiting 3 months for the first injection after the loading series was completed. I was told that I have functional B12 deficiency, because by then my serum B12 was over 2000ng/L, but symptoms getting worse and serum methymalonic acid (MMA) was raised. My folate and ferritin were low in range and although vitamin D looked okay, I was given it on prescription because I was found to have osteoporosis of the spine.

When my gums started bleeding and hair falling out, I thought these were symptoms of B12 deficiency, but my GP thought these were due to ferritin and/or folate. Some general vitamin deficiency symptoms are difficult to disentangle, so low mood/ mood swings, irritability, anxiety, fatigue, memory and concentration issues could be B12 /folate /ferritin- or all of the above !

Nails: like skin, hair, eyes, these are a good general indicator of health. A haematologist I saw was the first and only consultant to check the condition of my nails. They were thin, dull, splitting vertically, cobbled, with vertical blood lines. I have seen a whole lot worse when I looked online.

My GP told me you can have symptoms of low ferritin if it is below 60 ug/L. The oral medicine consultant that was helping me with angular cheilitis (cracked bleeding and sore corners of mouth) and large burning tongue said he thought I'd be better at 80 ug/L. It was a struggle to get to and maintain a figure of around 60 ug/L - but I couldn't get near 80.

It will take a while even with supplements. It needs monitoring by GP to ensure it is working but also that it doesn't get too high, as that can also cause severe problems.

With folate, it is better to be in the top third of the range. I aimed for around 15 ug/L - again it will take time, even with supplements, and needs monitoring to ensure it stays up but doesn't go over - which is not good either.

If you want to know more about thyroid results, the HealthUnlocked Thyroid Uk site is supposed to be very good, and many people with B12 do also have thyroid problems.

A balance can be had, but you will need the help of a supportive GP to get it, especially for monitoring and referrals. It is hard to find a GP who has a sound understanding of B12 deficiency, but a good caring GP will try to find out how to best help you improve.

Don't take this all on yourself.

Sleepybunny profile image
Sleepybunny

Hi,

I'm not medically trained but I think that spoon shaped nails can be a sign of iron deficiency.

nhs.uk/conditions/nail-prob...

See visual guide in above link.

Your ferritin was at lower end of normal range.

Has your GP considered doing a set of iron studies tests?

Iron Studies

labtestsonline.org.uk/tests...

Do you have results for Full Blood Count (FBC) also known as Complete Blood Count in US.

There can be clues on FBC at to whether person has b12, folate or iron deficiencies.

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

I wrote detailed replies on another forum thread with links to B12 deficiency symptoms lists, causes of b12 deficiency, info about tests for PA, B12 books, B12 websites, UK B12 documents, letters to GP about B12 deficiency and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

puja20 profile image
puja20

I am 36 and I can totally relate with you! I feel old in my 30's with low energy and aches.

Its been a rocky 4 months for me with lot of health issues where I don't feel myself and emotional all the time. Achy and stressed due to health condition.

I have made numerous calls to my surgery during this period. Everytime them telling me it's in the air, everyone's stressed. But I knew it wasn't just the stress. Finally managed a blood test a month after I started self treating myself with D. Lot of symptoms disappeared few weeks after i dosed with 5000 IU Vit D3 and sun bathed for 30 mins a day for 3 weeks.

All blood reports have come normal - done end of April. But I feel like I have switched from one issue to another and maybe that is one reason it's not been detected.

I sleep well, focus well, but my hands now go numb and tingly all the time ( especially when i do more stuff with them - like using mouse, trackpad )

If I do body stretches, even my back has started go mild numb. ( still not sure)

Only thing that I am sure of is, I was surely low on Vitamin D beginning of this year which is where it all started and had soaked in sun + taken 5000 IU supplements for 3 weeks in April which gave me Vitamin D reading 58. I still am keen on getting decent sun whenever possible.

Drs have given up one me and vice versa. So I have started to take mg. supplement (consulting Dr from same practice who told me to go with what internet says as they don't want to comment coz my electrolytes came fine in last test ) as my guess is maybe treating vitamin D and being stressed for over 3 months, I went low on Mg.

Do take higher doses of Vitamin D along with Mg supplement as it helps in activation of D. I was told in this forum by others to supplement but I didn't as Drs didn't advice but now I regret.

Aim to reach your level 70+

Have patience and surrender. Eat healthy. Follow a routine. Sleep well, try and break your cycle of sleeping during day and get back to good night's sleep. If you are physically capable, tire your body for a good night's rest. ( My body ache's so I just walk 45 mins a day, used to go for hrs of hikes. I dream of getting back to my normal self)

I try everyday to not focus on my bad health and do something else and express gratitude for the things I have. I will patiently wait for the day I can get this sorted when things will supposedly go normal and GP surgery will open up for routine tests and general public health ( it feels like my surgery has given up totally).

But in the meantime I am trying my best to make things good for me. Baby Steps!

All the best!

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