Pet scan was clear for vasculitis: Pet scan did not... - PMRGCAuk

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Pet scan was clear for vasculitis

5lupins profile image
17 Replies

Pet scan did not show vasculitis but have to have a MRA of aorta but dr not too concerned I think. No panic for this scan which is next week. Also mri of brain due to heaviness. Could be connected to old ear problems but feels we should check.

Also on letter blood test results Fe 4, ferritin 62, transferrin sat 6%. Iron profile suggests true iron deficiency……. My normal blood test is always Hb. about 12.5. No one has suggested iron tablets and I am reluctant to take any in case it alters markers. Is this a good idea???

I am very tired but feel it is better to be patient as the Doc is good. 😵‍💫

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5lupins profile image
5lupins
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17 Replies
piglette profile image
piglette

You can always boost up your diet with food items that help hb. I should talk to your doctor if you feel you should have iron tablets.

5lupins profile image
5lupins in reply to piglette

Thank you for your reply. I am trying to do this a bit but appetite poor. I can eat but not interested in bothering to get it ready. Hopefully the Doc will sort it as I can’t quite sort out the numbers on the letter. I don’t want to do the wrong thing as I feel a bit muddled with it all.

piglette profile image
piglette in reply to 5lupins

You could always try “instant” food you can eat immediately which help hb such as nuts and grains, smoked fish and prawns, dried fruit and salady foods.

Mayadill profile image
Mayadill in reply to 5lupins

Eggs are next best thing to no cooking and certainly pack some iron. I have been places where filling and boiling a kettle looks like hard work, but if you can boil a kettle you can boil an egg. There's a German dish called Eier im Glas, eggs in a glass, which has many complicated variations but I was taught the basic - soft boil two eggs, shell them into a glass, mash them up and then add in butter and pepper. Of course that might not be the sort of thing you eat!

5lupins profile image
5lupins in reply to Mayadill

Thank you for your reply. I had a hard boiled egg with some spinach yesterday but had forgotten about a soft egg. I seem lazy but cooked almost every day until OH died now I just eat as well as I can.. I walk for twenty minutes every day. I think weary best describes how I feel. I know I must make a push to go forward after next scans, but at the moment I feel I am at base camp awaiting the Sherpas to help carry my load. Ca they do house work? My kitchen floor is getting sticky!!! 😳Luckily no one calls. Take care . J 💐

PMRpro profile image
PMRproAmbassador in reply to 5lupins

I have a cleaner who comes for 1 hour a week - to do the things like wash the floor (she did that yesterday) and it is basically vacuum every week plus one other job - change the bedding, clean bathrooms. wash floors, clean kitchen. It works fine.

5lupins profile image
5lupins in reply to PMRpro

I realise that I will have to organise something soon but everywhere is rather a mess. Hoping if scans are not too worrying and maybe they sort this fatigue out I can sort it so I won’t be too embarrassed. Not too bad but only light housework for last few months so it mounts up, although I am not too fussy. Soo tired these days.Thanks for everyone’s help. Now can someone just get me out of this chair…… 🤗

Rachmaninov2 profile image
Rachmaninov2 in reply to 5lupins

I was embarrassed, but realise there was no need to be. There’s nothing wrong in needing some help.

PMRpro profile image
PMRproAmbassador in reply to 5lupins

Why embarrassed? The people looking for cleaning jobs often need an unskilled or convenient hours job to get income - some may be embarrassed at that in their turn.

Mayadill profile image
Mayadill in reply to PMRpro

Or just a student. I did masses of cleaning jobs. On both sides best through a reputable agency.

Rachmaninov2 profile image
Rachmaninov2 in reply to 5lupins

I have recently started to have a home help as I am unable to do much around the house at the moment. It has really taken the pressure off.

Mayadill profile image
Mayadill in reply to 5lupins

Kitchen floor, when at a low ebb and not actually doing much in the kitchen, it always seems to me rather unfair how the floor can get dirty. My 'kit' is as follows. Chair, which at those times is too low, so also old cushion. Squeegee with telescopic handle and sponge, which functions as a short mop. Antiseptic wipes, especially for edges and corners.

5lupins profile image
5lupins in reply to Mayadill

That sounds a good idea. My problem is I seem too tired to care. Things will get better when doc. advices me on the “ true iron deficiency problem” I guess. J

PMRpro profile image
PMRproAmbassador

Is the Hb still 12.5mg? That's in normal range for women.

5lupins profile image
5lupins in reply to PMRpro

Yes. That is what I don’t understand!. I tried to sort the other blood tests out and it looks as though you can have ok Hb and yet still have this true iron deficiency and the transferrin sat 6% looked low, but I am far from clear about this. nothing new with me being perplexed. 🤔

Missus835 profile image
Missus835

I'm sorry you're going through this. What do you mean "heaviness" re the MRI on the brain and being due to ear problems. I've had heaviness in my head and also have fluid rolling around there. Lost most of the hearing in my right ear. It's there, but depends on which way I tilt my head. If I tilt way to the right, the hearing gets better. Weird I know. A lot of head pressure. It's not a sinus infection. I mention it to docs, but they just gloss over it.

5lupins profile image
5lupins in reply to Missus835

No effect on hearing or tilting. I had similar pain before I was diagnosed with gca many years ago. I am also almost profoundly deaf. Ent said my ear would be hurting if they were the problem with a slightly indifferent look. So I know what you mean.

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