Finding a Dr.

[ChrisVic]

Hi, my Family Dr. is retiring in a few months.  I have been going to him for 34 years so it will be quite a change!  I am wondering with this change (my Neurologist is moving across country so I will need a new Neuro Dr. now, too!) if there is a specialist I should be going to for my PA?  I was diagnosed 15-20 years ago and have been getting monthly injections ever since.  I have been diagnosed with anaemia twice in the last 4 years and soon after diagnosis I ended up in the hospital with low oxygen levels which was rather scary!  I am wondering if the anaemia and low oxygen levels are related somehow but my Dr. has not questioned this.  Last diagnosis of anaemia was from low Ferritin levels.  Normal levels are 12-150 ng/ml and mine, after 1 year, 9 months of that on iron pills, my level is at 14 ng/ml.  While that level is considered normal it still seems low to me and it has actually gone down from 23 ng/ml since I went off iron pills in Dec.  2015.  I have doubts that my general practitioner Dr. is treating me correctly and am wondering if there is a specialist I might be better off seeing.  Any advice out there?  Thanks!

[deniseinmilden]

Will a new Dr take over from the last one?  If you are lucky you might get one who is more recently qualified, more knowledgeable and more keen to appear good in their new role. 

Either way I suggest you print off the BCSH guidelines and B12 safety advice at least and make an appointment ASAP to give them the benefit of your knowledge.  

Good luck! 

[Lisahelen in reply to deniseinmilden]

Forewarned is forearmed, read up on latest guidelines, print off relevant, for yourself as much as waving infront of gp.

Worrying as it is changing gp it might be to the good, but until you know what regeme they intend adopting, be it just continuing, which i expect they will do, lets face it why rock the boat it treatment plan in place is already working.

[ChrisVic in reply to Lisahelen]

That is the problem, I don't feel that the treatment plan is working!  I am exhausted all the time.  I used to sew a lot and haven't even sat in front of my sewing machine in 15 months!  My peripheral neuropathy is progressing up my legs.  They might want to blame that on the diabetes but my blood sugar numbers are usually pretty good (except when I am sick and in the hospital) so I tend to think it is the PA!  I would love to find a specialist in PA that could take over my care in this area but I don't know who to go to.

[clivealive Forum Support]

Hi ChrisVic,

I am not a medically qualified person so cannot answer of give advice.

However we are similar in that I was diagnosed with P.A. 45 years ago and am also on 4 weekly injections of Cytamen b12 (cyanocobalamin). 

Down through the years I kept becoming anaemic, given a course of iron for a few months and after stopping, down would go my levels again.  Eventually I was referred to a haematologist at Stoke Mandeville Hospital who told me I needed to be on iron supplements permanently and am now prescribed one Ferrous Fumarate 210mg tablet every day.

Breathlessness and anaemia go hand in hand if you have not enough haemoglobin in the blood to carry oxygen to cells.

I hope you find yourself a GP who is savvy about P.A. and wish you well for the future

[ChrisVic in reply to clivealive]

Thanks!  I am now taking a good multi-vitamin that has iron and Vitamin C in it so I hope that helps!

[Marz]

There seems to be an absorption problem with the iron - and I have read on the Thyroid UK Forum that taking VitC can aid the uptake of iron.  There are also many types of iron available and the one prescribed on the NHS is not always the best one   Again this is not my experience - only what I have read.

Your low oxygen will be connected to the low iron.  Red blood corpuscles contain iron to which the oxygen adheres for onward transportation around the body - simplistic description !  So low iron = low oxygen....

Have you read about The Lucky Iron Fish - it is a company in Cambodia that make Iron fishes which you pop into your casseroles/soups etc.  There was a huge amount of anemia in Cambodia which has been solved with this simple item.  They have a website in that name.  When you think about it we once all cooked with simple iron pots hanging over the fire

I have also read it is important to take a good B Complex when having B12 - as B12 works together in the body with Folate - it also keeps all the B's in balance.  If you have neurological symptoms then it is important for you to have more than monthly injections if your symptoms persist.  This is documented in the Guidelines for Folate and B12 deficiency.

bcshguidelines.com/document...

There are many very knowledgeable people on this forum so I am sure they will be along soon with more information.

[Lisahelen in reply to Marz]

Interesting about the iron pots, yearsago im sure i remember them saying not to use them for the very reason they are effective for iron deficiency, and aluminium ones too.

[ChrisVic in reply to Marz]

Thanks!  We do use iron skillets to cook in so that probably helps some but I still think I may need to take iron supplements all the time!

[ndodge]

Hi, 

When my ferritin level was 30, I was breathless, weak, my hair was falling out and my historically very strong fingernails were thin and brittle; in general I felt awful. I was also low in B12. 

I can only imagine how  bad and tired you must feel with your ferritin levels being so low.

I sincerely hope your new doctor addresses this problem!

Best of luck!

[19191919]

Yes I had these problems too and the breathlessness got better with b12 treatment and iron tablets. I am on 3 monthly jabs i supplement with b12 boost spray. and general b12 tablet. I used iron water spatone which helped me. not for everyone but helped me. You could look around and see if any local gps have any expertise inb12 or haemotology at my practice the drs have special interests, skin, eyes, diabetes etc. you  may great lucky . Good luck and stay well. xxx

[Laura5]

I also have low ferritin and apart from being constantly exhausted, breathlessness is one of my symptoms when it gets very low. I've been taking iron supplement for the last few years and never managed to get my ferritin level over 18. GP doesn't seem very interested as I'm not actually anaemic.

[ChrisVic]

I wish Doctors would listen to their patients more and trust that we know how we feel!