Sick and tired of always feeling sick and tired

[Hayley31]

I self inject B12 once a week but lately I still feel brain fog, tired, lethargic, weak, pins and needles, dizziness. Regularly have my blood tested but the only other thing that ever came up was vitamin D deficiency. I really struggle through life. Have to keep reminding myself that most people don’t feel like this when people pressure me about stuff. I don’t know what to do or how to even tell people what’s wrong with me.

[Sleepybunny]

Hi,

Sorry having trouble putting working links in this post. Will try again later.

"Regularly have my blood tested but the only other thing that ever came up was vitamin D deficiency"

Do you have access to all your blood test results?

I learnt from experience to always get access/copies of blood test results after being told everything was" normal" by GP surgery on several occasions, only to find abnormal and borderline results when I got copies.

Do you have the actual results for your last folate and ferritin and full blood count results?

Have you ever had a set of iron studies tests?

GPs often only test ferritin; a stored form of iron in the body but there are other iron tests that may show an issue with iron.

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

Thyroid tests

thyroiduk.org/getting-a-dia...

The symptoms of B12 deficiency overlap with those of thyroid issues.

Have you had recent thyroid tests?

In UK, GPs often only test TSH if concerned about thyroid but this is not enough to give a full picture of thyroid function and there are other tests they can do.

I suggest putting any thyroid results on Thyroid UK forum on HU.

I am not medically trained.

[Nackapan]

I agree to get tour results. I requested ferritin levels. Told normal but in the print out although within normal had dropped from 61 to 29. I seem sorry better now in the 40's . Gp did prescribe iron. I like many on here need daily iron . A first.

This stopped me shaking and getting si breathless.

Getting your vitamin d levek yo will help. I'm convinced getting mine ul from 21 to 69 helped reduce headaches. Agsin I need a modest daily maintenance .

I too am getting very tired of being ill.

I've got oral thrush for the first time in my life after taking anti biotic for a tooth. Despite taking probiotics (they upset my stomach) but co tuned with livr yoghurt. I think the last straw was the tooth fell apart do hadvti have more treatment.

I empathise . Its snakes and ladders .

I was enjoying having v a sort out at home and I suddenly came over so weak I could hardly walk . Tk bed and felt si I'll before getting to sleep. That knocked my confidence ad what if that happened when I was out?

Try and remember you are not alone.

I also unsure what to say as its mainly an in visible illness.

I know people avoid asking how I am also do not get it. My neighbour asks the most as sees me alot in this lockdown.

My mum simply says surly the doctor has found out whars wrong with by now??

It is a lonely place at times.

I really hope toy make improvements and learn go pace. Boring and so alien to me.

I'm hoping like you to still make agonising slow progress . I'm also doing weekly b12 I jections now. Have done then 5 or 6 days because of the tooth !!

My symptoms are still changing. In a way I think that as good.

Please take care.

I understand how this can get you down.

[Sleepybunny]

I wrote some very detailed replies on another forum thread which you might find useful.

Lots of B12 info in them.

healthunlocked.com/pasoc/po...

[Hayley31]

Thank you for all your replies!!! 😀

[Cherylclaire Forum Support]

It is hard to know when you need to explain - I have told people when I think it is otherwise likely that my behaviour might seem unusual. For instance, have explained to the staff in the chemist that I cannot always understand or remember detailed verbal instructions or advice. She can now tell if I'm not taking in what she is saying, and apologises and addresses my partner instead. Better than misunderstandings- but can be a hard blow to pride at first.

When I was very ill, I would have been unable to explain that I have cognitive problems- and in any case, would have been far more likely to assume it was everyone else who had the problem !

Having said that, some people will never understand or make allowances however much you might open up to them. Why would they ? Even GPs and consultants find it difficult to believe that B12 deficiency means anything more than "tiredness". I'd never even heard of B12 when I was first told I was deficient. So no preparation for what it might mean to me, partner, family, work, general wellbeing - no reason to believe that this would be life-changing.

This forum has really helped me find my way back.

Sleepybunny and Nackapan are right - best to get copies of all your blood test results and any consultant reports.

My folate and ferritin were both low in range but never below range. It took a couple of years to raise and stabilise these as often I would have to supplement on top of supplement to get them up, then they would drop back down despite daily multivitamin & mineral tablet and improvements to diet. Best to get folate and ferritin into top 1/3 of range - but these do need to be monitored by GP to ensure they stay where you put them and not go back under or over range - which can also give you problems. Ferritin below 60 ug/L (range : 13-150) can give you symptoms and mine never went below mid-30s.

Vitamin D I got on NHS because I was found to have osteoporosis of the spine.

You might want to have your thyroid checked too, as all of this can cause thyroid to struggle.

A supportive GP is really important. Far more important than trying to find a B12 deficiency expert. Good medical professionals will investigate, refer, monitor, look, listen and care. If they want to know more about B12 deficiency, they will do what we had to do.

Take it easy, Hayley31 .

[Litatamon]

Hayley,

Let us know your vitamin d number when you get it. If it is very low you do need a very aggressive dosage to get it up into a normal range.

However, you must get retested after three months. An excessive dosage of vitamin d over time can be dangerous to your kidneys and heart.

All the best to you.

[Nackapan in reply to Litatamon]

Yes and make sure just over 3 months . My vit d wasnt done last time ad 1 day before 3 months and labs refused it!!

[Nanc72]

My vitamin d was insufficient vs deficient In November at 29. I have only brought it up 27 points. Not feeling a whole lot better. I am on Botox and a preventative for migraines and still get them. I did just post a ? about iron though. Wondering if that’s the underlying issue. I agree with everyone above. Get a copy of all your labs.

[Hayley31]

Thank you. My vitamin D is 29.

[Litatamon in reply to Hayley31]

Hayley,

Not sure what measurement you are in -

My original number was 7.6 ng/ml (19 pmol/L)

And I got it up to 31 by/ml (77 pmol/L).

I was told to take 10 000 iu/day for the first month (drops) and 5000 iu/day for the next two months. This is very aggressive but it worked. I really felt an immediate difference in my leg strength. (To anyone reading --- do not do this without a health professional monitoring your levels)

I missed going in to retest ay three months and then the virus hit, so I hardly took much waiting to get in to check it. I was told 2000 iu/day until I could get in, but I was hit and miss taking it.

My GP thinks my numbers are fine. My naturopathic doctor would like to see them a lot higher. I still don't feel like I have my legs back. And weirdly enough I feel awful on vitamin d drops, that should not be the case - makes no sense, but I continued on regardless.

Whatever you do just make sure you get retested.

All the best to you Hayley. As for friends and family, tell them you have an auto-immune disorder and it is very frustrating at times. Tell them once and that's that, unless they are truly interested in understanding. Some are never going to understand unless they experience something similar.

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I too feel a great deal of fatigue still and some neurological issues try to make a return at times. It is frustrating.

[Hayley31]

Thank you 🙏 That’s really helpful!