PA or purely thyroid related?

[LowB12]

I’m about to tackle GP regarding my ongoing symptoms and all advice welcome.

I have a strong family history of hypothyroidism, both (younger) sisters one with high thyroid antibodies & one just diagnosed with graves. I have seen GP several times in past with hypothyroid symptoms & as an asthmatic treated with increasing inhalers for SOB despite recent lung function test being pretty good. Definitely have asthma but now wondering if some of the SOB is related to B12!

Bloods from 2years ago showed low B12, 2/52 later retaken, as they ‘forgot’ to do thyroid antibodies which is what I had specifically requested with strong family history & sister’s consultants recommendation. B12 had gone up ‘slightly’ according to GP, from recollection (as don’t have a copy as just told over phone) it was either still below lower range or just into.

Serum B12 133g/L (180-800)

Basic thyroid levels were ‘normal’ but I was told high thyroid antibodies after 2nd test. I asked about B12 injections or meds, as gran had PA and I did some research, I was told not needed as had gone up slightly. Told thyroid would fail at some point & I would then need medicating and that I should change my diet as cholesterol also high. Diet, I agree not superb, but certainly should not make me have such low B12 & high cholesterol (wasn’t asked what I ate, so surprised they would be so sweeping)!

Long story short, I probably have undiagnosed Hashimoto’s that is likely causing all symptoms, including low B12 & high cholesterol. I have ordered private thyroid blood that I’m having done Sat, including vit levels. I am then heading back to different GP at same surgery.

Question is ...if B12 element is still low do I need to request any other specific related bloods before I insist on being medicated ( or end up medicating myself), as I have read that once you start injections for example some results are skewed?

I need to get on top of this ASAP, affecting life too much now, but want to get it right first time and don’t trust GP and not heard optimal things about local endocrine services if I do get there!

Any advice welcome, I’ve found info on here really helpful...thank you

[LowB12]

Thanks for replying. I told my GP when last bloods taken & when results came through about my family history...just dismissed it. Off in a bit to get private bloods done, then arm myself with articles and printouts and head to GP again as informed as I can be. Considering writing it all down and insisting reception scan on to notes as evidence this time, if I don’t get anywhere, that they were fully informed.

[Highland49]

Hi LowB12,

I definitely agree that your SOB could be related to low b12 but from my experience, it could also be thyroid related! So many symptoms overlap. You're right in saying that once you start treatment, b12 results are skewed. Even taking energy drinks with vitamin b12 in can affect the blood result.

The trouble is with the b12 blood test (and thyroid tests) is that it doesn't tell you how much is available at cellular level. Sadly, GPs don't know enough about b12 testing or treatment to know. I supplemented for years, not knowing my results were falsely higher as a result. I then came off supplements for 2 months but prior, in desperation, had taken high dose ones that elevated my b12 level even more, so GP refused a trial of injections, even though I had neurological symptoms.

There are more accurate tests for PA, such as the MMA urine test but it's not usually offered on the NHS. All other tests I believe will be skewed by any supplements. High cholesterol can be related to low b12.

You need to have your folate, ferritin (iron stores), selenium and vitamin D checked. Good folate and iron levels are needed to support b12 treatment and vitamin D and selenium helps thyroid function.

Lots of people on here and other forums self inject. I have done for the last 8 months. Having all your vitamins at optimum will help your thyroid function and conversion of thyroid hormones, but of course, it will only go so far with your family history.

Good luck with your testing 😀

[LowB12 in reply to Highland49]

Thank you

Just had bloods done privately & wrote a letter for whoever is reporting explaining issues and asking for them to specifically comment if possible on:

Thyroid antibodies & possible Hashimotos

T4 to T3 conversion

B12 and recommendations

& a couple of other things

Also gave copy of last bloods prior to the ones I had with high antibodies. It may not help but if you don’t ask!

Off now to get evidence & NICE guideline to take to go.