Potential newbie - desperately need advice

[CanIHaveYourJuiceBox]

Hi all. Bit of background - I was diagnosed with Graves Disease (autoimmune thyroid disorder amongst other things) in April 2019.

Recently I have been experiencing vertigo, zero energy, lightheadedness and headaches. I was told I had BPPV but had bloods done anyway. My b12 and folate look low to me. I eat plenty of meat in my diet and eat leafy greens too.

GP has said as I have my endocrinologist appointment in three weeks, that they should be checking me for pernicious anaemia. I feel this is a bit of a fob off tbh. What do you experienced professionals think of my blood results ?

[fbirder]

B12 is almost twice the lower limit, which suggests it's not a problem. Folate is in the normal range, and folate doesn't really have a grey area like B12.

[cantstopit in reply to fbirder]

but serum test doesn't show if it gets absorbed. get an active b12 test

[fbirder in reply to cantstopit]

Of course a serum test shows if it is absorbed.

There is no real advantage to the 'Active' B12 test. It doesn't tell you anything you cannot find from a serum test, unless you have a very rare genetic disorder that affects transcobalamin function.

[CanIHaveYourJuiceBox in reply to fbirder]

After talking to others (and from my own experience with Graves), each doctor treats differently. It seems like a lot of people started getting injections when their b12 was at 200. My GP has taken it somewhat seriously now and has sent a letter for my endocrinologist to pick up further testing at my next appointment (March 24th).

[fbirder in reply to CanIHaveYourJuiceBox]

Different labs have different equipment and different methods and can use one of two units. So, if some people are treated below 200 it might be the same as somebody else being treated at 125.

[cantstopit in reply to fbirder]

for some they don't have enough even if their serum is 100000. that's why its useless. or they can be ok at 25

[Imaaan]

Hi,

I'm no expert but I can speak about my experience. My body functions better when my b12 is at 600 pmol/L or over. It looks to me that you're on the lower end of the normal range. Your ferratin is well below the half way point as well, which is 95. This could contributing to your vertigo. When my ferratin dips I become extremely fatigued and have experienced vertigo as well.

Are you taking any b supplements?

Eating liver and lentils should bring your b12, folate and ferratin levels up God willingly.

[Gambit62 Administrator]

Please note that this is a patient peer to peer support forum - and not a subsitute for professional medical advice.

Personally I think your GP has given you the right advice - initially reading of the above is that your Graves may not be under control at the moment so follow up with endo.

Please note that thyroid conditions on their own can affect the speed with which food passes through the gut and can lead to problems absorbing micronutrients without the presence of other conditions, such as PA which is an autoimmune gastritis.

Evidence of falling levels of serum B12 (falling by more than 20%) would be a more significant result than a single measure that is within the normal range.

[mcg-woo]

Ask for MMA test. You could have a B12 deficiency with a reading of 209. An MMA test can identify a deficiency before it officially shows up in B12 serum. Also, there seems to be a consensus that US lab values are too low-take them with a grain of salt. I’m in the US and at 282, the lab included a warning with my result that even though my B12 was within normal range, that neuropsychiatric symptoms could be present as well as effects on blood with values under 350. It stated that only 1/% of people have symptoms of low B12 with value over 400. Good luck!

[Cherylclaire Forum Support]

My sister has Grave's disease and has recently suffered from very low energy levels.

My first thought was "B12 deficiency" (family get sick of hearing it!) - however, her white blood cells were found to be low. Her GP believes this to be caused by the medication that she is on, but there are a number of other possible reasons, including having an autoimmune condition in the first place and, in her case, recently having had gum infection resulting in removal of three teeth.

I agree with Gambit about keeping an eye on direction of travel over time with B12, folate and ferritin. Might be worth also ensuring white blood cell count fine - if not already done.

Good that you have a consultant appointment soon.

I'm not a medical professional. I just have two sisters with Grave's disease, and have seen how difficult it is to get a balance.

Great name -intriguing and unforgettable !

[2FloorLuka]

Hi. I was also diagnosed with Graves disease and based on my personal experience your free T4 is too low for your body needs. Don't get distracted by your falsely low TSH and don't let it guide your treatment. Ask for a tapazole/carbimazole reduction and when your TSI decreases you are naturally going to see a raise in your TSH. As for the other results, you don't look like a typical case of PA, but a MMA test can prove me wrong. Your ferritin is in the low side and it cause symptoms too. ((Hugs))