Urgent advice needed - update from my appointment with endo

[Jellyfish_1]

Hello all,

I had a great a great app with endo.

He will write to my GP to prescribe iron and b12 supplements, based on recent tests.

He had prepared a plan for me a few weeks before I came, when I contacted him to inform him how unwell I felt, despite my numbers being ok ( to put me on different medication, which he said he would tell me about now at my next app). due to b 12 and recently getting shingles, he changed the plan. I am now doing I short synacthen test in a few weeks (once totally recovered from) shingles . If that comes back fine, he said he will change my meds and if m not if will decide with me next steps.

All sounded good to me. I left happy. I hope this is of use to you guys.

Sorry if not written well. Very hard to be clear at the moment.

(My original posts below for reference)

Good morning guys,

I would be grateful for your advice once again. I recently posted here about private b 12 results which were 104 (140-724.

my original post is down below in brackets, to which I received very helpful advice form this group.

I have now received the results of my blood tests from my GP. pic attached Both tests were taken within 1 week of each other. The I've not made an appointment with GP yet to discuss, but a note was left on the system alongside the results to say they were fine and no further action. I still feel terrible as per my post below.

At 8.45 this morning I'm seeing my thyroid endo. he made me an urgent app due to my symptoms. I suspect he may reduce levo. But I feel until I don't take b 12, I should not tamper with levo.

Please advise me urgently. I'd be super grateful for my help. Thanks so so much.w

(Original post

Hello all,

I've been kindly directed here by admin from thyroid UK.

I would be super grateful for your interpretation of my b 12 and iron results.

I have a diagnosed under active thyroid for which I'm taking 175mcg Levothyroxine. I currently feel fatigued, body aches, joints ache,left leg shooting pains (feels like nerve), cold hands and feet and weight gain of 1 stone(despite super healthy diet).

My dose of Levo has increased a few times recently. I usually feel better for 6 weeks and then come crashing down)

Any advice would be gratefully accepted.

Kind regards

[Admin Note: Image temporarily removed to protect posters/GP identity - to be re-posted]

[clivealive Forum Support]

Hi Jellyfish_1 in addition to the excellent advice Gambit62 gave you on your original post all I can add as a non medically trained person is to quote the following:

False normal B12 results and the risk of neurological damage.

(U.K. N.E.Q.A.S Haematics.org.uk)

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

Basically this means that your doctor should be treating your symptoms instead of looking at the computer screen.

Do you know why your B12 level rose between the tests? Were you supplementing?

Your Folate level is very low too (in both tests). There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance. . Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

[Jellyfish_1 in reply to clivealive]

Thanks so much for your quick reply.

I'm not sure why why b12 rose. I ate one omelette between tests. No supplements.

I'll make an appointment with my GP regarding b12 symptoms and getting supplements. Also I'll take iron supplements. brain is super foggy, so I would-be grateful for recommended supplements?

Kind regards

Angela

[clivealive Forum Support in reply to Jellyfish_1]

See what your doctor says first as he/she may be aware that your thyroid problems put you at risk of developing a B12 deficiency and I'm not qualified to give you advice beyond my own personal experience.

However if your GP is "uncooperative" come back as there are plenty of people on here who can give you good advice on self supplementing.

That's a bit of a mystery about the rise of your B12 level. Although eggs contain B12 I can't believe that one omelette would give you enough.

I wish you well.

[Sasha1 in reply to clivealive]

clivealive

I read your reply with great interest. I'm just wondering how one knows if you have the right ratio balance of B12, folic acid and iron? There seems to be much discussion on here about misleading b12 serum results. If that's the case, how do you ensure that you have the right levels and the right ratios of all three? I'm taking 4000mg of meth B12, 1600 ug of folic acid, but until I read your comment, I hadn't really thought about iron beyond a multi vitamin.

In short, if b12 serum blood levels are so misleading, how do you know you're taking the right amounts of supplements? Is it trial and error until you feel better?

[clivealive Forum Support in reply to Sasha1]

As I say Sasha1 I'm not a medically trained but if one has supplemented anything before a test the result is likely to be skewed from what is the norm unless a "decent" period of time has elapsed since stopping, but I'm not qualified to say what that period might be.

In my own case, because of gastric surgery at the age of 17 I have had P.A. for over 45 years I have cyanocobamalin B12 injections every three weeks and have taken 1 – Folic Acid 400μg

and 1 – Iron Ferrous Fumarate 210mg every day (as maintenance) for more years than I can remember.

I'm sorry I cannot give you an explicit answer except that it might pay to get them tested just to see you are not overdoing the Folate. You cannot "overdose" on B12

[Sasha1]

Many thanks, clivealive and

[Sasha1]

Many thanks clivealive and eaoz for your comments. I think you're right about the folic acid, I will revisit that, just to be on the safe side.

Sasha