High ferritin levels. : I'd gone to see my gp... - Pain Concern

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High ferritin levels.

Debbs73 profile image
Debbs73
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I'd gone to see my gp the other week to see him about jigging my meds about, whilst there he wanted me to have my bloods taken which 2 weeks ago came bk high and they wanted to re-test 2/3 wks later. So yesterday o had them fine again. The nurse from my gp surgery rang me this am to Say my gp has referred me to a hematologist for further test. I'm awaiting my gp ringing me to explain further. As I'm really worried now after doing a little research myself on the Internet. The same thing keeps coming up "Cancer". Any advice guys if any of you have been in the same situation. I'm really scared.

Tia.😊

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Debbs73
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Bananas5 profile image
Bananas5

Shut down Dr Google.

x

Debbs73 profile image
Debbs73 in reply to Bananas5

Hi Paton.

I know i think you could be right. I play war with my husband when he self diagnoses on Google. Maybe should take my own advice eh.πŸ˜•An wait to here from the professionals. I hate waiting for things at the best of the times but this is even worse.

Bananas5 profile image
Bananas5 in reply to Debbs73

I know but think back pre computers!! Then it was leafing through Gray's anatomy finding lots of other conditions along the way.

People do go to their GP saying...I read on Dr Google I have.... GP get very upset which is understandable.

Wait til you have results then come back here and tell us. Look it all up then.

Hugs

x

Debbs73 profile image
Debbs73 in reply to Bananas5

Yeah I have done that I've looked it up on a few different sites. I'm seeing my gp on Monday coming but that's a long few days. So rang my gp surgery back and asked if my gp could call me bk which he did so. He said it could be an hereditary blood disorder that has just shown up. A viral infection ,hep c. To that I was like how could it be that???explained it could again be due to viral infection. Problems with liver, or could be due to the medication that I take.

I said I'm going to ask u straight out is it "Cancer". Said very unlikely to be,edging more to all the above. He's going to do the hep c one at surgery on Mon so at least rule 1 out. Said won't be to long of a wait.

That's put my mind at rest a little. Thanks Debbs.

Bananas5 profile image
Bananas5 in reply to Debbs73

Well done to your GP. Now you have to distract yourself

x

Debbs73 profile image
Debbs73 in reply to Bananas5

I will thankyou for the chat. Will post updates when I know more.

Thanks again Paton.πŸ˜ƒ

Madlegs1 profile image
Madlegs1

Exactly how high is your ferritin level? I have 1200 for last two years- no symptoms of any illness at all. Not genetically hemacromatic. Specialist said if it was hemo , I would have a history of increasing ferritin levels over the years. There are a number of potential causes and effects- but plenty of tests to put your mind at ease.

There are some people who simply have high ferritin and no ill effects.

But if it were me, I would be inclined to push for phlebotomy ( giving blood )and see whether that brings it down.

That is after all the tests. Liver , heart cancer , genes etc. It will be a long process of elimination- but if you are in reasonable health ( I don't know your primary illness) you have no concern in the short term.

You are right to be worried , but not panicked.

Mind yourself - and breathe occasionally.πŸ˜‚

Debbs73 profile image
Debbs73 in reply to Madlegs1

Hi madlegs1.

My gp said it was 900. So hearing yours is 1200 is good to hear if that makes sense. It was just a routine blood test how we found out it was high as he was testing for something else. After speaking to my husband last night about it and out right asking my gp if it was Cancer and him replying no helped put my mind at rest. I've had no other effects apart from my daily problems that come with my chronic pain. Like someone mentioned in one of my message's on here at least it's been found and being sent to the hematologist who will help find out why it's high.

Thanks Debbs xπŸ˜ƒ

Madlegs1 profile image
Madlegs1 in reply to Debbs73

Inflammation is a cause of high ferritin level ( the body reacts to chronic pain by manufacturing ferritin to fight it)

An ESR blood test can show if this is the case- but not the specific cause.

I'm in the same process- getting blood tests and doing my research with my colleague ( Dr Google) who has to be treated with the two " isms" - cynicism and scepticism.

My answer to doctors who hate him - is that they are extremely busy and time deficit- I have loads of time and a very specific interest.

I also choose my sites carefully and have to weed out the trolls and mischief makers- even on this site!

It's great that you are on the road to finding out what is the cause- even though they may come up with nothing. Asymptomatic high ferritin.

They should get bloods from you every three months to ascertain the trend.

Under 1000 is not a huge cause for worry- mine has been bumping along at around 1200 for at least 2 years- and I'm in excellent health-- if you don't count spinal reconstruction, smashed ribs (still healing) broken shoulder and RLS .

Good luck with all your tests- you have a long road ahead.

But you will know a lot about your body by the end of it.

Enjoy the ride. I enjoyed the ultrasound (as a male) - saw all my abdomen insides- all clear and healthy !

Cheers.

grace111 profile image
grace111

google has helped me when my doctor did not know what was wrong with me. i typed my symptoms into google and had to go back to my doctor and tell him what to test me for and sure enough i had cryoglobulinemia.so its not all bad you have to make sure that you go a proper site. and check a few i got the mayo clinic in america and im in bonnie scotland. i even got images of the illness that were exactly like mine.

Debbs73 profile image
Debbs73 in reply to grace111

Hi Grace 111.

Thing is I have no symptoms of anything. I'd gone to my gp for something completely different. He then decided to run some test's and this is how we found out I had high ferratin levels.

grace111 profile image
grace111 in reply to Debbs73

hi Debbs im sorry to hear of your troubles and i do hope that whatever is wrong gets sorted for you. i was just making a point that google is not all bad. as i found out about my illness with google and i also found this forum with google. so i really need google. i also use google images a lot. love grace xoxoxo

Debbs73 profile image
Debbs73 in reply to grace111

Hi grace 111.

Yeah I agree with ya Google is good for some things. I too found this site through Google. Am maybe like yourself in so glad I did. I found this site as I also suffer from chronic pain in my knees, back and shoulder and I find it is good to chat to other people in the same situation.

I don't know if you've ever felt the same but I have sometimes felt like im the only one who has these problems (obviously I know I'm not and there are people alot worse than me)but that doesn't help me. So talking to people like yourself and others on here really helps. Its ok talking to family and friend's but they don't fully understand how I feel like people on here do as they're in the same situating. Is also helpful to get ideas of different drugs to take. As I'm sure u know our bodies get immune to drug's after a while so it's good to go to my gp and say can we try this and that. Which thankfully my gp is greatand we try them or he'll say you've tried that and was no good. So yes Google can be very helpful.

Sorry for the long winded message. DebbπŸ˜ƒ

grace111 profile image
grace111 in reply to Debbs73

hi debbs im sorry i took so long to get back to you. i knew there was someone i had to reply to but could not find the email. i see you are in a lot of pain with your knees back and shoulder. i tried to copy and paste a video from utube for you but its not working, i'v already posted it and if you look through my posts on my profile page you will find two one i posted for deejames and one for someone else.they are not far down the list as i only put them there a few days ago. they are feldenkrais technique videos from utube and we are very very lucky to get them free as it cost a lot of money to get a teacher and they are excellent for pain. and if you cant do the movement with your body just do it with your mind and you will be amazed at how easy it is once you can do it in your mind your body will be able to do it. i wish i could get that video for you i'v tried twice tonight already and it did not work. once you get the video hit the utube button and you will see a whole host of vidoes to try . yes i have often felt like im the only one as you say there are people that are worse of but that does not help us. also found them through google. i dont know what i would do with out it. we cant just remove things because people use it wrongly. there are many alcoholics but we dont shut down all the drinking place. (pity about that ) its true though we can get obsessed, i'v done it myself looking up illness's and scaring myself but i did find one that even the doctor did know what it was and i had to go back and tell him to test me for it. so its not all bad even for illness. dont worry about long winded messages i enjoy chatting to people and not even just about illness. im made a few good friends on here and have many chats and messages and we talk about lots of things. one of the things i like google for utube and getting some exercises that i can do that are just about 10 minutes long. im doing two at the moment both for my arms as at 65 and being ill for a long period of time and just being like a zombie on some of the medication i was on has taken its toll on my body. i'v always like exercise though and dancing. my arms are really starting to look good now as i'v been doing the same two work outs for over 3 weeks. if you ever want to chat just message me and i will message you back. i hope you find those videos as they are not hard exercises they are really just small movements and you do most of them lying down which is good if your in pain, love grace xoxoxo

Debbs73 profile image
Debbs73 in reply to grace111

Hi grace.

I've had a look for themvideo's on ya wall but couldn't find them..So my job later is looking for them on u tube. I have noticed on your profile messages that you had hep c. Now this is one of the things my gp mentioned why my ferritin levels could be high. Just to update U all. I got my hospital letter on Thursday to book my appointment for my hematology tests to be done. That is not till November which seems age's away. However I'm going to see my gp today and while I'm there he said he can do the hep c test then, just to rule that one that. How did you get Hep c grace? (If you don't mind me asking). Am I right in thinking it's down to a viral infection? . Thing is if we hadn't just being doing these blood tests to be ran for something else, we may never of known that my ferratin levels are high as apart from all my other problems (which is enough to deal with on a daily basisis ) I feel fine in myself. At least we going down the right paths now. Thanks grace that's very nice of you to offer me to message you. I love my family and best mate loads but they can never fully Understand how I'm feeling. So I'll take u up on that offer. Nice chatting to you. Will keep you updated what my gp says today.

Take care debbs.xxxx

grace111 profile image
grace111 in reply to Debbs73

its just as well then that you got tested for something else and found this. i did have hep c and it was because of drug use. using needles.its a viral infection, i think they will be testing by elimination if you dont feel that you are ill in any way,apart from your pain, there are many things it could be.that video i put on is under replies on my profile page.although it was put on 16 days ago by deejames i replied 2 days ago. if you click on it you will find it on the page. i dont even know if he got it as he never acknowleded it. but its really there for anyone who can use it. i hope you find it. so if you go to replies its about number 9 down. thats the name of the post just below. i had a very late night or should i say morning i stayed up until almost 5 am, i really will have to stop this.keep your chin up debbs november seems a long wait. try not to worry. your in my prayers Debbs.love grace xoxo πŸ˜€

Week 3 post sacrioilic joint surgery

in Pain Concern 2 days ago

Debbs73 profile image
Debbs73 in reply to grace111

Hi grace.

Well went to my gp on Monday. Whilst there we talked about the ferratin. He rang our local hospital as in my gps words"us gps don't know it all".

My gp told the other Dr that he was going to do a hep c test to at least rule something out, the Dr said is definitely not that. Which I suppose is good. Yeah my gp said it was a viral infection (hep c ). If you don't mind me asking was your due to prescribed medication.

I'll go and have another for it. Yeah you right November isn't that far away. Hope your keeping OK grace. Anytime you fancy a chat, a moan or even a rant. Take care. Debbs. XxxπŸ˜ƒ

earthwitch profile image
earthwitch

Stop googling! Cancer is not the only thing that can cause high ferritin levels. Your doctor is doing the right thing in referring you to a haematologist to check it out further, but that doesn't mean it is anything serious. you say you are already on medication - if that is for any kind of inflammatory disease (rheumatoid arthritis, etc) then acute inflammation can be a cause of high ferritin as well. The other possibility is that the high level is actually your normal level anyway.

Advice now is to just keep calm about it all. Especially if you don't get an appointment with the haematology specialist for a while (that in itself will tell you that the doctor didn't consider it urgent, so likely not cancer). No point in worrying until you know there is something to worry about.

Debbs73 profile image
Debbs73

Hi earthwitch.

Yeah I'm being sent in that right direction now. I think I panicked when was told bring sent to a hematologist.

Yeah your right it could be any number of things that is causing the high Levels.

Like u have said and also what my husband has said. Don't worry until there is something to worry about.

Thanks DebbsπŸ˜ƒ

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