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Newbie First Post.. B12 deficiency and Crohn's, Increased injections and "The Sighs"

Gutfeelings profile image

Hi everyone.

This is my first post although I've visited a few times but have difficulty getting my foggy brain together to post. My story is quite complicated and not sure what to leave out to prevent the post getting too long but apologies in advance if it does and thanks also if you can offer any help.

I have had health issues for many years but managed with varying treatments surgeries and sheer determination until the end of 2014 when blood tests showed iron deficiency anaemia despite me not having periods due to longterm treatment of endometriosis. I had had years of abdominal pain and diarrhoea (sorry) which had some links to the "endo" as I had it on the bowel with very thick adhesions. Fast forward to 2008 I had two hospital admissions with severe pain diarrhoea and dehydration which needed intravenous fluids for several days. I had biopsies the second time which were queried as colitis but I was unaware of that and had no follow up. I had a diagnosis of functional gut disorder so tried to get on with it and made few changes to try and remain in my job as a part time staff nurse which I loved. Sadly I'm no longer practicing due to my health deterioration. I changed my hours and role but I was getting increasingly tired and losing concentration which I thought was due to missing meals etc.

After being investigated again by a different consultant for my abdominal pain/symptoms I was surprised to be told I had low b12 level was 177 I also had mri and other tests which led to the diagnosis of Crohn's in the terminal ileum which she said was the reason I wasn't absorbing b12. I used to be able to take vitamins and iron if needed but started getting flare ups of severe pain and diarrhoea after 1 or 2 days of taking any.

Fast forward again and I have low Vitamin D and low folate levels. As I can no longer take oral supplements I have injections and infusions for iron deficiency. The folate deficiency is now lower I think the last level was 2. I was started on b12 injections but I was told I would only get one! I have a good gp surgery and 2 or the drs know me quite well so after quite a while of retesting my bloods refusal by the lab to test which caused delays as the drs would only treat if they had a recent blood test. I asked a practice nurse who got me onto loading doses shortly after the one I'd had a week or two before. I then had 3mthly injections but as time went on I noticed more symptoms were not improving mainly the fatigue and brain fog plus some altered sensation in my feet which I'd had a few yrs previously but thought it was the hormone treatment I was on to stop my periods.

I'm sorry this is so long...i just can't think straight I used to be so "on the ball" but I'm so forgetful its scarey. I currently have the sighing that I read is typical of low b12 but I'm puzzled by that as my gp agreed to me having my b12 injections every 8 weeks which I've had the third 8wk inj on 23rd Nov.

I am not currently iron deficient after a blood test at the end of Oct. My vit D is low at 15 it was 10 before my injection in May when I had another iron infusion and I'm due another test but I don't have the energy to actually go for it. I have joint and muscle pain which is making everything much harder which the gp is going to investigate next after the vit D is resolved. No one seems to know how to treat the low folate level I've tried low dose and syrup but all give me abdominal pain so have to stop.

I also have an elderly mum with multiple health issues and recent problems with her vision which is a worry, so I need to be as well as I can be for her as I'm her carer.

Again thank you if you got to the end of this post and any thoughts very gratefully received.

Take care

3 Replies

Hi - I am not as knowledgeable as many on this Forum - so will just be sharing ! I am active on the Thyroid UK Forum as well as here. You can find out more about me by clicking onto my username above and having a quick read of my Profile - only takes a couple of minutes... I am not a medic - but have Crohns - Hashimotos and a B12 issue ...

I was diagnosed with Crohns after Ileo-Caecal TB when I was 27 - now you have to reverse the numbers for my present age !! I was diagnosed with Hashimotos back in 2005.

Various gut surgeries for the TB and then the Crohns left me without a Terminal Ileum. It is in this area that B12 is metabolised as you know - having traveled from the stomach - before returning to the liver. So without this area of my gut or for those with some gut disorder the absorption of B12 will be affected.

Low VitD is well documented as being LOW with Crohns - and is good around 100 + - as it is an anti-inflammatory - steroidal - pro-hormone - so would be helpful in dampening down the gut inflammation. I am wondering what your GP has suggested about correcting this low level. I think you would need loading doses initially before a good maintenance dose throughout the winter and then re-test in the Spring. You can check the protocol for VitD in your area by going to the CCG website. Each area varies I believe. GP's rarely prescribe adequate amounts :-( You can buy VitD drops for under the tongue that also contain K2.

There are important co-factors for VitD supplementation - Magnesium and VitK2-MK7. I am happy to expand and explain more.

Low levels of VitD - B12 - folate and Ferritin - are very common with auto-immune issues which can include Hashimotos or Auto-immune Thyroiditis. Have you been correctly tested ?

Sounds as if your Mum could do with similar tests to yourself and I have read that LOW B12 can affect eyesight.

Hope you soon find answers ...

Gutfeelings profile image
Gutfeelings in reply to Marz

Hi Marz

Nice to "meet" you..thanks so much for your detailed reply I'm very grateful. Have just read your profile and gosh you have been through a lot but great to hear you still keep so active despite it all.

I'm thinking the same as you regarding the testing wonder if I should be referred to rheumatology or haematology not sure which!

I'm bit puzzled as I'm still out of puff or "The Sighs" as I read was quite typical of low b12 yet I'm on 8 weekly injections now?

As for the vit D I had one injection in May but a hiccup with my blood test happened and the test was never actually carried out to see if I'd improved after the hot summer we had. I did have one repeat test which showed it had only gone up to 15 from 10 that was about 3-4 weeks after injection.

I'm currently waiting to go in for a routine mammogram so don't think I can write morr for now but wanted to say thanks for taking the time to reply.

Many thanks for your help...

Marz profile image
Marz in reply to Gutfeelings

Private Testing for the Thyroid is available on the Thyroid UK website - see link below.

Click onto About Testing in the link above - to see the various companies offering an 'at home' service ... it is the only way to have the correct testing - the NHS falls short and only tests the TSH and sometimes the FT4. These tests are only part of the story and do not reveal the full story.

Thousands on the Thyroid UK forum use these services in order to have the correct testing done and to monitor treatment.

VitD is difficult to obtain from the sun - as you need to show around 40% of your body when the sun is highest between 11 and 3 pm :-)

Hope all goes well for you ...

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