Updated ferritin level

[Redveranda]

Hi all,

With having haemochromatosis (iron overload) unknowingly hashimotos too until recently.I am monitored every 3 months via a blood test to check my ferritin, letter just received has me at 38 lowest ever been,it says will contact me again in 3 months after next blood test to let me know when to have another venesection, in the past was encouraged to donate in between, I won’t be donating for a while with the low count. I’ve tried ringing to let them know of hashimotos but always answerphone with no call return. A year ago I was over 600. My diet has been geared towards lowering iron levels avoiding vitamin c with certain foods, I feel I can relax it a bit as so low?

Blood test today requested via Gp will be covering , HBA1c, coeliac, liver, renal,ESR, B12, folate, vitamin D, calcium , creatine, quite the collection. Hopefully should give some insight into why so little energy.

[Regenallotment Ambassador]

Goodness that is a low ferritin, do they suggest you should work to raise it? Do you know what your haemoglobin is?

[Redveranda in reply to Regenallotment]

Hopefully will get my haemoglobin count with the latest tests in next day or two, quite disjointed care at the moment as hospital who monitor ferritin don’t know I’ve also got hashimotos and trying to contact them is anwerphone message and not returned call. Hospital does a fbc plus ferritin test every 3 months but only let me know ferritin level even when I’d previously asked, letter just says ‘need for blood letting when nears 100, they are happier if it’s lower. So I have to ask gp to do separate bloods to find anything else out.

My repeat prescription eventually came through 25 levo now daily a different brand crester (teva) as such a low dose should I request on keeping with crester ?

[Regenallotment Ambassador in reply to Redveranda]

Get on the 25mcg daily and test at 6 weeks and request ‘trial’ of 50mcg.

Some get on ok with Teva some don’t, one of the fillers is mannitol which gives some people digestive discomfort, others itching, some people don’t notice anything at all, so worth giving it a shot. It is one of the few lactose free brands.

If you don’t get on with it go straight back to GP and request same brand as before if that suited you. There is a NICE guideline you can quote about GPs and pharmacies not changing brands as our bodies have to adjust to metabolise each change. However, this isn’t well known amongst pharmacists and GPs and often we hear ‘it’s all the same’ and it most definitely is not. helvella posted an interesting paper where they tested this and proved the difference in fillers etc impact. You could always give them that if they think they know better 🙂

[Redveranda in reply to Regenallotment]

Thanks will see how it plays out, the gp doesn’t want me testing for 3 months but I should have my full blood results shortly, also got me down for chest X-ray and to go see a physio for painful joints etc. should be 🤩

[Regenallotment Ambassador in reply to Redveranda]

Amazing well done, look at you advocating! 👏

PS GP needs to read NICE guidelines for Hashimoto’s it’s 6-8 weeks not 12 (mine said exactly the same, I ignored and kept asking and repeating NICE)

[Redveranda]

Thanks for encouragement, makes a real difference knowing not alone.