Struggling as tired. Always

[Shaharazad]

Hi I'm angie have had underactive thyroid since I was 25 get pills for it and had gastric bypass in 2006 and get B12 but I'm still exhasuted

[Sleepybunny]

Hi,

Do you think you're getting enough B12?

Some UK forum members ahve reported their GPs have stopped B12 injections, or delayed them or swapped them for oral tablets.

I copied most of the info below from a reply I wrote on another thread.

Injections stopped due to pandemic

Have a look at these two links which both have ideas on what to do if jabs cancelled because they are seen as non essential during pandemic.

From PAS website

pernicious-anaemia-society....

There are lots of comments under the posts as well.

From B12 Deficiency Info website

b12deficiency.info/blog/202...

Blog post below asks for people to leave comments if their injections have been stopped due to impact of pandemic.

b12deficiency.info/blog/202...

Most recent blog posts/news items about stopped injections

b12deficiency.info/blog/202...

PAS statement published 11th April

pernicious-anaemia-society....

If you're in UK, be aware that the British Society of Haematology (BSH) has issued advice for doctors during pandemic.

b-s-h.org.uk/about-us/news/...

Click on General Haematology tab in link above

then

Click on BSH Advice on Supplements tab

I feel that some of the details in the BSH advice are concerning, there is a recent thread on forum which discusses this.

I think long term that some UK forum members will struggle to get their jabs reinstated after pandemic has ended.

Some people get injections from private GPs and some find that high strength oral b12 eg tablets, sub lingual lozenges, sprays, drops help a bit. I think most people on here find that injections are more effective than other methods. Some on forum source their own supplies and self inject.

Have you considered joining PAS?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a telephone helpline for PAS members to ring.

PAS support groups in UK

pernicious-anaemia-society....

Have you also considered putting any concerns about treatment into a brief, polite letter to GP?

In UK, letters to GP are supposed to be filed with medical notes. Letters could contain symptoms, test results, personal and family medical history, extracts from UK B12 documents/articles, info from PAS etc.

Keep copies of any letters written. It is useful to have a paper trail in case there is a need to complain in the future.

People whose injections have been stopped/delayed may want to think about drawing GPs attention to the potential for permanent neurological damage if a person is under treated.

If people start to suffer deterioration in symptoms due to injections being stopped/delayed/swapped for oral tablets I think it is important to keep GP informed.

If I need to do this I will be writing brief letters informing GP of any increase in/return of symptoms.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society.... See Page 2.

At the moment, GP surgeries may argue that these are exceptional times and they cannot offer injections at the surgery. Some on forum have asked their GP surgery if they can be taught to self inject.

WHO (World Health Organisation) classifies B12 as an essential medicine so in my mind, people should not be denied treatment.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.

CAB NHS Complaints

citizensadvice.org.uk/healt...

MPs

May be worth informing local MP of any difficulties in getting treatment and contacting AMs in Wales, MSPs in Scotland and MLAs in Northern Ireland.

B12 article from Mayo Clinic

ncbi.nlm.nih.gov/pmc/articl...

Suggests

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable

3) Successful treatment should not be stopped

Symptoms Diary

I think it's worth keeping a daily symptoms diary which tracks changes in symptoms over time and when any treatment is given. It could be useful evidence of deterioration ( or improvement) in symptoms that could be shown/copied to GP if necessary.

I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

Thyroid

My first thought was whether or not your thyroid issues are being treated optimally.

Might be worth putting any thyroid results on Thyroid UK forum on HU. It's a very active, supportive forum.

I am not medically trained.

[ellj]

Hi, how long since your thyroid meds were reviewed also how often do you get b12 injections.

I have Hypothyroidism, Pernicious Anaemia and MS.

I pretty much feel tired after any effort but I am also in my seventies.

When I was started on thyroxine and then b12 injections I felt the benefit after a few months.

Ellie