New member

[Annie071066]

Hi, I have been advised to ask here for advice. I have many symptoms that could cover a few conditions, I am (by blood tests) post menopausal and on hrt, as I had a hysterectomy aged 32, I am now 49. I was told back in 2012 my b12 was 197ng/l (211-911) and after fighting they eventually gave me tablets which never made me feel better. My symptoms have remained since 2012 and Dec 2014 I developed double vision and summer 2015 I started with hair loss, and still losing, I am being investigated under eye care for Myasthenia Gravis but have been warned that sometimes blood results in range still could mean you have a condition , my results Dec 2015 were:

TSH. 2.2. (0.35 - 5.5)

FT4. 15.5. (10.0 - 19.8)

Sorry for the long post but do these seem OK ?

[Spareribs]

Hi Annie & welcome - a long post?

Although your Thyroid tests are within range, unfortunately this does not necessarily mean you feel well.

The low B12 needs further investigation as it can cause neurological problems as well as eyesight problems and hair loss - there's a pernicious anaemia forum here which can help. Have you had recent tests?

Best check vitamins (vital=essential for life) B12 & folate, ferritin (iron) and Vit D (to start).

BTW Tablets don't often work as B12 absorption takes place in a certain area of the gut, so gut problems stop absorption - hence most folk need injections. J

[Annie071066 in reply to Spareribs]

Thanks for the reply Spareribs (love the name!)

Ferritin was 46 (10-291)

They didn't test b12 as I said I take my own tablets but iron serum was 10.5 and RBC, MCH and MCV all showed high/low consistent with b12d and iron anaemia, folate was 16 yet I've never supplemented before the test which once again makes me think it's sitting there doing nothing as there's little b12 to work with.

I am on b12d Facebook group and so after these tests I started self injecting b12, supplements of ferrous sulphate , folic acid, d3 & K2, magnesium, vit c and zinc and copper. I had the chat with dr prior to bloods and she thought this was thyroid related although some symptoms (eyes and mild muscle weakness is consistent with myasthenia also) but she said ideally ferritin will be 80+ yet has ignored the results . I requested my blood results for last 3 years when this all happened and most things seem to point to b12d which I've been supplementing since 2012 and yet every single time they've told me my bloods are fine ! I'm wondering if it's auto immune ? On the b12d page our members that have thyroid issues too all say they feel better when their TSH is at 1.0, hence why they've directed me here to ask

[Marz in reply to Annie071066]

The 1 result for the TSH is usually for people taking thyroid medication. I think your problems are related to B12D. How often do you inject B12 ? and which one do you use ? Some people need to take a different B12 in the form of a lozenge under the tongue or use a spray. Most of the B12 is absorbed in the Terminal Ileum for re-processing via the liver. So any gut issues would prevent this happening. I am referring to the time you took supplements before the injections.

Maybe you have an issue with the polymorphism that prevents the methylation of Folate - MTFHR - or something like that - sorry am in a rush

[Annie071066 in reply to Marz]

Thanks Marz

I just wanted to eliminate thyroid, which I will now do

I did loading doses over Xmas and every other day for 3 weeks with hydroxo, vicious circle because the injections deplete other factors, namely potassium so have held off any more injections to build up my potassium and ferritin but will try cyano next time I inject to see whether it helps more than hydroxo

Kind regards and wishing you all well xx

[Marz in reply to Annie071066]

I have weekly B12 injections and eat a banana afterwards for the potassium ! I also take a Thorne B Complex to keep all the B's in balance.

Don't eliminate the thyroid on my say so - have you had your thyroid anti-bodies tested ? Mine were high but all the TFT's well within range. I would also ask for the antibodies to be tested that are involved in PA. Anti IF and Anti Parietal Cell. Sometimes autoimmune issues hunt in packs

[Marz in reply to Marz]

wellnessmama.com/27148/mthf...

The Edit button did not work Annie - so add to add another post !

[Annie071066 in reply to Marz]

I have many allergies. (Predominately latex) so can't have bananas/avocados etc) but have found coconut water mixed with fresh orange great for potassium. I have a double eye appointment next week I guess to confirm or dismiss myasthenia (again!) so will ask their advice on testing for all auto immune conditions consistent with fluctuating double vision and hair loss

[Marz in reply to Annie071066]

...lets hope they are up to speed with auto-immune issues. It seems a very misunderstood area if the thyroid and B12 are anything to go by.... Hope all goes well for you.

I have found that I have had to learn for myself - and not rely on the medical profession in learning about auto-immunity. You can read my edited profile by clicking onto my name to read about my journey

[Annie071066 in reply to Marz]

Thank you Marz I'll have a nosey