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Blood results - What do the mean?

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laura_19229
laura_19229

Hi All,

I had some bloods taken a few weeks ago thinking I may be diabetic, I'm not however they came back with high iron levels. My Doc wants me to wait 3 weeks and have them all run again before she refurs me to a hematologist to rule out false results. However due to them being so high I cant imagine they will change much. I am a bit confused as when researching correct levels they seem to be measured differently by different labs. My serum level is moderatly high but my saturation is very high, 36yr female

Lab Results:

Serum iron    43 umol/L                Recomended   6.00-26.00umol/L

Serum TIBC  47  umol/L                                       41.00-75.00umol/L

Serum ferritin  367 ug/L                                        13.00-148.00ug/L

Transferrin Saturation index   91%

In Peoples experience do these results:

Mean hemochromatosis?

With these levels, what treatmnent am I looking at? (how often and for how long)

Can you change where you give blood? ( I am self employed and work all over the country)

Once refured to the hospital how long until you get appointment/start treatment?   UK  NHS

Any views welcomed I know things will vary from postcode areas as with any NHS treatment but as I'm self employed I want to be as prepaired as possible incase I need to arrange work around this.

Thanks

                                            

1 like, 9 replies

9 Replies

  • hemopatient123
    hemopatient123 laura_19229

    Posted

    Good questions. You aren't confirmed that you have hemochromatosis until you have the genetic test. Next step is likely to have that done and see if you have 2 mutations on the HFE gene. If you do, you have hemochromatosis. If you don't, your iron panel results posted may mean something else.

    If you are confirmed, you can give blood anywhere but would need to take the prescription with you. It would be more annoying to do it at multiple places but not impossible. Ideally you would go once a week until your ferritin is normal and TS% are normal. Could be a few weeks. Your TS % is high so possibly more for you. Your ferritin is only marginally high so hard to say.

  • mike80628
    mike80628 laura_19229

    Posted

    Hi Laura...

    I think you'd need to have the gene test first to determine whether you have hereditary Haemochromatosis. Your ferritin levels are perhaps a tiny bit above average...mine was 2000!!!

    If the gene test is positive, you'll need some weekly phlebotomies to get the ferritin down to at least 50, and then you'll perhaps donate blood maybe 2-4 times a year...probably less.

    If you've had no other symptoms, tiredness, arthritic pains anywhere, abdominal pains etc...I can't imagine you have with levels fairly low, then it will all be fine.

    As I say, get the gene test done asap, just to confirm if you have hh in the first place. Then you'll be referred...may have to wait for a month or so.

    All will be sorted....

    Keep in touch....all the best.

    Mike.

  • laura_19229
    laura_19229

    Posted

    Hi Thanks for your replys, I will update this once I have my second set of bloods next week.

    As for symptoms, the reason I went to the doctor thinking I was diabetic was because of extream fatigue, especially after eating, this is why I thought it was a blood sugar issue, not just a little tired but like I am slipping into a coma. I also have bad joints all over my body, hair loss, shortness of breath and occasional heart palputations, all of these I had put down to either my physical job- joint pain, and the shortness of breath due to fitness as too tired to do any proper exercise once home from work. I have suffered from short term memory loss increasingly for the last few years and the brain fog and slurring my words, this I put down to a thyroid issue even though thyroid results were fine, research told me the thyroid tests often give a false negative, I started taking kelp tablets which have helped a little as foggy brain was a symptom of thyroid not controlling iodine levels correctly. Obviously all these things could be symptoms of other things but even though the ferritine levels aren't massively high like other peoples, they are still more than double the recomended level for a female of my age and are the high saturation levels are concerning. Im not particularly worried about having this if the test come back positive, more concerned about how it may affect my work if I cant have bloods taken where ever I am working and have to end up turning work down. Being self employed-no work no pay- no sick pay- no holiday pay = no way to pay morgage etc. Hopefully if I do have to give blood regularly it wont be for too long or make me feel to rough.

    Laura

    • sheryl37154
      sheryl37154 laura_19229

      Posted

      Thanks for your headsup in another post, Laura.  As for your test results, the most telling result is your TS% (91%).  That is the best indicator for HH even if you ferritin is not so high.

      I put mine to an excel sheet and out jumped similar results for me, many years after I have been 'deironed'.  SI=44, TIBC=47, TS%=94, the difference being that my ferritin was 133.  The previous result had been 26 so something must have been going on then.  It is important to write notes on how you are feeling when you have tests, but I had a lot of catching up to do with my recording and did not.

      I was astounded to see someone else suffers from coma like feelings after/when eating.  That is what I get, not always anymore, but now and then.  I put it down to feeling like my blood from my brain and extremities goes to my stomach to help the digestion process and had vague thoughts wondering if it was related to HH and the iron absorption process.  I read a lot of research regarding HH and had never come across it.

      Any glucose tests were always normal, although I have not had one for a long time.  I am slim and do not look like a likely contender but I believe that is not a rule, as we with HH are prone to diabetes.  For many years, I have eliminated sugars and starches from my diet, and mostly for the smaller waist I achieved because of doing that.  As well, I had long felt that I was not digesting starches properly as well, getting bloated all the time, so that improved too.

      I must take note if I feel coma like after consuming starches/sugar when I eat them to be polite.  I remember one time, I was at a fabulous dinner, and had to leave part way through, I was collapsing with fatigue.  So embarrassing, like I had too much to drink.

      I recently met a woman who has the same problem when she eats certain foods.  Her husband says she also puffs up.  Whether she has HH or not, is not known, she has never been tested.  But I remember one of her foods to avoid was tomatoes.  Her dietician gave it a name similar to being gluten intolerant.  The guys took over the conversation so I could not ask for more detail.

      I subscribe to Medifocus for haemochromatosis, and they stated that sugar causes an uptake of iron.  As sugar and starches are the culprits for fatty liver which in turn increases iron levels, I am not surprised.  But I have not had time to search out the research from which they got this information.

      So at this stage, my thoughts are towards sugars and starches being the culprit to the fatigue caused by digestion, OR something to do with our hepcidin not doing its job.  The first, we can take steps to avoid, the second, we cannot do anything about it.

      Except perhaps the suggestions that drinking tea, coffee, milk with our meals reduces the uptake of iron.  Vit c juices increase the uptake.  Eat diary (calcium) foods with meals, i.e. I have cheese or yoghurt as a desert now.

      Anyone else have this problem and got any ideas?  I know there is another post where someone has said he is hungry all the time, and others have come forward.  That stopped happening to me when I gave up sugar and starches and ate protein as a snack.  It has come back to me since visiting France and their partissiaries too much.  So I have to suck it up and get over it, with the help of proteins.  I will go back to having a protein drink when I feel that way.

       

    • laura_19229
      laura_19229 sheryl37154

      Posted

      Yeah I'm different all the time too. Not sure if it's different foods or if starchy ones. Can be fine for weeks then a zombie same with foggy brain. My students have got used to ending my sentances for me. It's usually lunchtime food that particularly knock me out. Although at a wedding recently had to have a lie down in the corridor after evening dinner. My boyfriend thought I was drunk and avoiding his family ha!

      Had second set of tests through 3weeks after first.

      Serum iron down from 43 to 33

      TIBC same at 47

      Saturation down from 91% to 70%

      Ferritin up from 367 to 426

      I wonder if I was feeling better as blood dumped it all somewhere and as saturation creeps up am starting to feel rough again. I feel sorry for my dog staring at the door wanting to go out as I lie around on the sofa. I never used to be so lethargic

      Anyway have been refurred now after last set of results which was 17th may. Appointment came through for 10th August so will just have to wait and see what they are like then

      Laura

    • sheryl37154
      sheryl37154 laura_19229

      Posted

      Love it to hear your students are finishing your sentences for you!  Just goes to show they are listening and comprehending.  They probably think it is a test for them.

      Work lunches are always the most difficult because they usually include bread made from starchy grains.  Have you tried meat/eggs and salad, or left over dinner, as long as it is not pasta/rice.

      No, lying down in the corridor is not a good look!  During the 9 years of non diagnosis, I was always staggering and slurring at work, and desperately wanting to crawl under my desk to sleep.  I can bet some colleagues thought I was taking a sip now and then.  Sounds funny, but it is not.

      Trouble is your blood has dumped it in an organ or two, which you don't want - the quicker you can start venesections the better.

       

    • laura_19229
      laura_19229 sheryl37154

      Posted

      Thanks sheryl.

      I try to eat light lunch but I live in Britain where it's cold and dark so sometimes the starchy option gets the better of me. ??

      Will update once I go to the hospital see where my levels are at then.

  • sheryl37154
    sheryl37154 laura_19229

    Posted

    In Australia, we can now have our venesections at Blood Banks as long as the dr has ordered it.  The order can be done online.  They might not use it as a donation, but it is useful if you move around a lot.  Because they have your records online, you can go anywhere and is useful for travellers.

     

    • sheryl37154
      sheryl37154

      Posted

      Mentioning this in case a similar arrangement can be made with the Blood Banks in the UK.

       

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