Finally things are moving forward...

[Cinderellen]

I have just been to see the Haematologist today re: iron-avidity/Haemochromatosis and PA. I am in a situation with my Haemo that the recommended treatment would be a venesection to reduce the transferrin saturation but I led the consultant away from that to concentrate on the B12 and PA, and had valid points to argue when he stated one thing or another. He handed me a handwritten letter to my GP requesting a trial course of B12 injections at 1 per week. I am so happy... it's a start. I have already requested the GP to sign the prescription and I am hoping to have the injection at 5pm today. How's that for being armed with the correct information and being assertive? I thank you all for the wealth of information shared to enable me to get to this point.

Questions now will relate to what cofactors are needed and any advice so that this trial becomes part of my ongoing treatment. He has ordered a few blood tests in 6 weeks for the following: chem profile, direct antiglobulin test, ferritin, FBC, Iron profile.

Any suggestions most welcome as I am trying to learn as much as I can to keep 10 steps ahead... I'm not going to just be dismissed when I feel this bad.

TIA

[Galixie]

It does sound like you have two different issues going on. It's great that you got a letter stipulating B12 injections. Correcting the B12 problem will not improve the iron overload. I do hope you plan to pursue treatment for the iron problem as well.

[Cinderellen]

Sorry, I'm not sure how to edit my post but the bloods for the aforementioned tests were taken this morning and I will get the results either from my GP or when I next see the consultant in 6 weeks.

I have some 'strange results' according to the Haematologist and have already puzzled my GP, hence the re-referral back to clinic... but he wanted to venesect to reduce the transferrin saturation which is currently too high.

My results from November and January are as follows:

S.ferritin - 27 ug/L (Jan 17)

T Sats - 72% (Jan 17)

T/ferrin - 1.7 g/L (Jan 17)

Iron - 36 (Nov'16)

Folate - 5.7 ug/L (Nov 16)

Vit D - 55 ug/L (Nov 16)

B12 - 256 ng/L (Nov 16)

MCV - 91.4 f/L (Nov 16)

MCH - 30.7 pg (as above)

Hb estimation - 13.2 g/L (as above)

Positive PCA test (Jan 17)

It looks like he is testing for Haemolytic Anaemia with the Direct Antiglobulin Test but he didn't tell me this, I found out by requesting a copy of the blood test form for my records.

Something is certainly going on as most days I struggle to get out of bed before midday and fall back into bed upon returning home at around 5 or 6 pm each night. I am currently resting now. It seems that is all I ever seem to do at the moment.

I will have to have a venesection for the Haemochromatosis) in 6 weeks... especially if the B12 makes no difference to the fatigue/exhaustion and/or the saturation levels haven't decreased by then.

[clivealive Forum Support in reply to Cinderellen]

To edit a post click on the down arrow next to the "Like" box

Was Folete included in the test today?

[Cinderellen in reply to clivealive]

No, no folate test today but last one back in November was lower end of the range so I am going to ask GP for some when I see her next Thursday.

[clivealive Forum Support in reply to Cinderellen]

Please do:

"Folic acid is crucial for proper brain functioning and plays an important role in mental and emotional health. It helps in the production of DNA and RNA, the body's genetic material, especially when cells and tissues are growing rapidly, such as during infancy, adolescence, and pregnancy. Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body. Vitamin B9 works with vitamins B6 and B12 and other nutrients in controlling the blood levels of the amino acid homocysteine".

Vitamin B9 (Folic acid) University of Maryland Medical Centre

[Cinderellen in reply to clivealive]

I have already mentioned it to the practice nurse who said "I know where you are going with this one and you are correct, speak with doctor next week" I have seen that I can get some at the pharmacy priced at less than £2.00 for 90 x 400 mcg tablets but thought that I should speak with GP first given my Haemochromatosis and PA conditions.

Are there any other cofactors to consider?

[clivealive Forum Support in reply to Cinderellen]

I'm sorry - I'm not medically trained but I've had P.A. for 45 years and I'm still "clivealive" at 75

[Cankita]

You will recall from an earlier reply that I too have Haemochromatosis and B12 Deficiency so I'm interested in following your progress. Good that you have got as far as a trial of B12 but I feel that one a week might not be enough and your GP might well call an end to the trial too soon.

I was lucky enough to be given Mon/Wed/Fri injections (initially for two weeks but now ongoing) but I didn't notice any improvement until the third or fourth injection. After that the change was dramatic as far as fatigue, both mental and physical, was concerned. Like you I use to stay in bed until almost midday but now I wake between 7.30 and 9.00 ready to get up and face the day. I still have neurological problems but expect these to take some considerable time to resolve. You may be lucky and find some effect after one injection but don't expect miracles. At 1 a week it might be well over a month before you see any improvement if you see any improvement at all with a long gap between the injections.

If I were you I would press hard for 6 alternate day injections as recommended in the NICE guidelines. Print out a copy of the guidelines (google NICE guidelines B12 and it should be the top result) and take them along to your GP. If you have been offered a 'trial' then it should surely be in accordance with the published guidelines otherwise why have guidelines? My GP didn't even know about the NICE guidelines and only agreed to continue treatment after I had referred him to the NICE guidelines (and written him a three page letter explaining why I thought he was wrong!).

If it works for you at 1 a week all well and good but if not don't give up too soon and be prepared to go down the DIY route.

[Cinderellen in reply to Cankita]

Thank you for your reply. I have already got in mind the NICE guidelines and have mentioned it to the nurse yesterday. I see the doctor on Thursday and I will push for the alternate days as I have neuro symptoms; I will also be asking for folic acid and vit D tablets. It was the Haematologist who put me on to the 'trial' but I think it was to humour me to some degree. My GP is more than willing to work with me and thankfully knows that I learn and research to come back with more requests/questions/solutions. She always listens and we tend to bat things back and forth usually in my favour. I can't complain, she's like a breath of fresh air compared to some.

Thankfully being armed with the good knowledge from this site and other reputable sources of all the above and have already told the nurse and my family that I am quite prepared to go down the SI route if I don't get the treatment that I feel is deserved.

I have noticed a difference today after the shot yesterday but keeping an open mind at the moment, however I shall be writing in my wellness journal about it all to see if any patterns emerge.

I shall be going to The Haemachromatosis Society's conference in Birmingham on the 1st April, so shall be asking lots of questions there. I also intend to join the PAS and learning more about how things are from that perspective.

Things have to chance for the better as I am determined that this isn't going to be my life from now on in.

Thanks again for your reply, I value your input.

[Cinderellen]

Just an update - I have had B12 injections reduced from 12 weeks down to 8 weeks based on my neurological symptoms. I had my first one after loading 3 weeks ago but have crashed this week with a return of many symptoms.

I have done very little physically and yet I'm back to my bed to rest. So, I went to see the prescribing nurse for some Folic acid 5mg and to discuss why I feel this way. She noticed that my last ferritin level April/May was just in range, at the low end, and ordered a FBC, iron panel and folate (before I took any tablets) to see my current status, just in case my levels have dropped further.

I felt so poorly and desperate so I decided to run myself a salt bath and administer my first B12 injection. I cowardly opted out of the IM and took the SC route. I am hoping that I have a better day tomorrow. Hope all is well with you. x