Weakness and fatigue after nearly 3 years of injections

[KittyKitten]

Hi there,

I started injections nearly 3 years ago. I have had varying frequencies, everything from eod to every 2 weeks. I had so much improvement in the first year or so, but since then it seems to have tapered off.

Some symptoms that have improved include dark vision, depression, balance issues, difficulty coordinating arms, unable to hold up my upper body, dying feeling, nerves woke up, unable to comprehend what people were saying, etc.

However, I am left with pretty extreme fatigue, and have a generalized weakness feeling all throughout my body. My brain function is slower, memory bad, feel foggy.

This is affecting my job, relationship, friendships, etc. I have hopes and dreams, and am currently pregnant, so I have so much to look forward to. But everything just feels like a chore, even fun things.

My other blood work has been really good, and I am taking vitamins (prenatals with iron, folic acid, vit d). I am on thyroid medication which is optimal. I still get regular b12 injections, which still help, but don't take away my fatigue.

Is it normal to still feel this way after 3 years of injections? I want to be healthy for my baby and I am worried that I won't be able to care for him the way I need to since I feel so weak and tired. Can fatigue and weakness be permanent?? I am at a loss at what else it could be, as injections were the only thing that has helped.

Thanks so much for reading.

[deniseinmilden]

I felt like that at that stage and really rather despaired but gradually I have got better and, after 8 years of daily SI I am still improving!! I'm loads better than I was a year ago and am starting to look forward to more challenging things.

Great to hear your blood work is good and you are managing everything optimally. Your growing baby will be taking lots out of you - literally - so give yourself a chance for that too. If you need to rest, you probably just do.

I don't know about nutrition for pregnant humans (animals is my sphere) so can't recommend anything, other than perhaps researching methylfolate, rather than folic acid. It made a huge difference to me but it doesn't suit everyone. If you have too much or you don't need it, it gives you a stonking headache. A very few people do best on folinic acid so it's possibly worth looking into that too.

You must be doing lots right or you wouldn't have got pregnant so your body thinks it's OK to do this!

Congratulations, well done and good luck!

[Sleepybunny]

Hi,

Congratulations and I'm sending best wishes your way.

How often you are getting B12 injections now?

Some people on this forum find they need far more B12 than their doctors suggest.

"My other blood work has been really good,"

Have you seen all your blood results? I learnt to check all my results even if told they were all normal.

Might be worth posting any thyroid results you have along with an outline of your story on Thyroid UK forum on HU.

Do you mind me asking which country you are in, it might help people to post relevant information. I'm in UK.

A few B12 websites

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

B12 Info.com (formerly B12 deficiency Info) website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

I'm not medically trained.

[Nackapan]

I'm not suprised you are fatigued.A job

A pregnancy

B12 treatment

I had my first taste of proper fatigue when I was pregnant .

Hopefully you will be on maternity leave soon.

You are doing all of the right things .

Eat well.

Rest.

Kerp up your b12 and vitamins .

Your body is working very hard.

You must have s certain level of well being to be pregnant .

Hang on to that .

Congratulations.

[mcg-woo]

Hello, my recovery was delayed because my weekly injections were reduced to once every other week. I could not fully recover on that injection schedule. It took about 2-3 years of weekly injections to fully recover and that is my maintenance dose now .

It may be that you need more frequent injections to fully recover. I noticed a change within about ten days after I switched back to weekly doses, so I knew I was on the right track. Still, it took years to fully recover with weekly shots. Best of luck and I hope you feel better soon!

[Polaris]

Lots of good links and advice above KK

Congratulations on your pregnancy.

I’ve always thought the Weston Price website offered really good health advice in pregnancy. Weston Price was a dentist who travelled the world, after he noticed people who ate natural and traditional foods had better foetal development and sound teeth :

westonaprice.org/about-us/b...

[Cherylclaire Forum Support]

Congratulations, KittyKitten - wonderful news.

I felt that I was struggling for ages, not improving like others here - and that surely something had been missed. Something else. Something worse, maybe ?

How else to explain worsening symptoms: at worst, footflop meaning I had to lift up knees very high like a clown to ensure I spanned the doorstep, cognitive failure meaning I could not understand people, incompatible individual words in sentences, losing wordfinding ability for myself, and memory loss and confusion requiring me to make notes about practically everything. Yes, and the little things: hair loss, nails ridged and cobbled, infections that I couldn't fight off and treated with antibiotics that gave me vertigo. And the constant exhaustion which made all things, even treats and adventures, a chore and something to "gear up" in advance for.

But no - there really wasn't anything else. It honestly can be that bad and worse.

An ENT senior consultant had read the detailed GP report and confirmed (on observation -without the need for testing) that I had severe B12 deficiency. This despite having had B12 treatment for years. Plenty of varying frequencies, tests and consultants.

He told me to continue with the (then) every other day injections, to persist and not lose heart -that it would take a very long time but that it would improve. I trusted him - and he was right. It takes ages, but improvements are very gradual for some of us.

You have done well to keep working and that is something to be proud of. Keep hoping and trying. Also have regular monitoring of all else that can be affected : folate, ferritin, vitamin D, thyroid.

It took about two years to get these to be stable at better levels with vitamin D on prescription due to osteoporosis - which reduced after a couple of years to osteopenia, something I did not realise was even a possibility ! My methylmalonic acid (MMA) remained raised for three years too - then suddenly normal. Things slowly started looking up all round.

(Retesting B12 levels not required once having injections.)

[MrsTuft]

This thread is hopeful that so much healing can happen over time.