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High transferrin saturation% but normal ferritin

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kristi44423
kristi44423

I have been feeling poorly for a few years but able to deal with it (abdominal pain, nausea), but I really became concerned about a year and a half ago when I became so fatigued and lost all stamina.  I'm mid 40's and was used to exercising 5 times a week (an hour of stationary bike plus free weights and lots of stretching).  My body felt like Superman when he was surrounded by kryptonite.  I'm a mom and need to be functional, so a year ago I told my obgyn at my yearly appt, and she prescribed me synthroid since my TSH level was not where they like to see it (it was a little over 3.0 - not too bad).  That gave me a bit of energy back, and I was able to get through the days and do the best I could to get some exercise, but I still was dragging and just felt achy and very old.  6 months ago, I ran some bloodwork because I just feel like something is wrong. My billirubin was high at 1.5, serum iron was high at 178, transferring saturation was high at 60%, but ferritin was a normal number at 88. Next, I ran a dna test and am only heterozygous for H63D.  I took these results to a gastroenterologist and was told the billirubin was probably Gilbert's syndrome (harmless), and that some people just have high iron and it is harmless since the DNA test showed no hemochromatosis.  He wanted to get to the bottom of my fatigue and pain, so I've had an endoscopy, an abdominal CT, been tested for h pylori and celiac.  Everything has turned out fine.  The most recent test was a 24 hr urine for porphyria.  I got the results back a couple of days ago, and it did not signal porphyria (although I don't know how accurate it is when the urine is collected when I was not having an attack).  Anyway, I am now reading about non-HFE iron overload.  I'm not sure what to look at for some clue about non-HFE or if that is even something to pursue with a normal ferritin.  

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  • hemopatient123
    hemopatient123 kristi44423

    Posted

    What was your ferritin level? How normal was it? Your body may be just starting to load iron. It takes years to become saturated and then you store (if you have non-HFE). I wouldnt test non-HFE. Expensive and a high saturation % alone is unlikely to be your cause of pain so even if you have it, you can't do anything to cure your pain. Action plan:

    1) Give blood to get the saturation % down so you don't eventually load iron.

    2) Test B12 as someone already said here.

    3) Run a CBC to check for any red blood cell based issues. Address any abnormalities with doctor for other diseases indicative of those abnormalities.

    4) Also run a CRP lab test and Sedimentation lab lest to see if you have any inflammation ongoing.

    Good luck

    • kristi44423
      kristi44423 hemopatient123

      Posted

      My ferritin level was 88 ng/ml this past spring.

      Thanks for your suggestions 1-4.  I haven't given blood yet, but that will definitely be on my to-do list.  I'm keeping my B12 at a normal level with methly B12 tablets and injections.  My CBC looked fine this spring, but I am going to have another one done along with another iron study.

      The gastro ran CRP and sedimention in May.  CRP was .5 mg/l, and sedimention was 2 mm/hr.  Both within normal limits.

      Thanks so much.

  • jefffcc
    jefffcc kristi44423

    Posted

    Hey kristi44423 just be really careful with thyroid meds cause once on med's you cant turn back to regulate thyroid.... believe me my mom is getting hers removed cause of hyper and meds.. plus thyroid is a hard touchy area cause a tsh of .100 iug or lower ur hyper... over 2.0 iug your hypo...

    Look up bilary dyskineas, or sphincter oddi disfunction I have both which I got stomach , naseau, pain etc got my gallbladder out which was due sphincter oddi dysfunction... makes liver enzymes go up and causes iron deposits in liver like me...

    If your liver enzymes are up do you drink energy drinks or caffeine? That will do it to..

    Your Iron levels are almost with in range... to me...if you were with in 190 iug close to 200 or in the 200s or 300 and up like me I would worry...

    Try b12, b6, ginseng, choline, omega3, vitamin e, gluthalione ...for 10days and see the diifference I am a believer cause it helped me ... remember your body only acts different cause it is low on vitamin deficiency... and yeah donate blood help if you can for cancer patients. ..

    • kristi44423
      kristi44423 jefffcc

      Posted

      Hi Jeff.  At the beginning of my abdominal pain, of course the first thing everyone thought was gallbladder.  US was normal and didn's show gallstones, but hida scan showed gallbladder wasn't funcitoning at optimal level, so gallbladder was promptly removed.  Unfortunately, that wasn't the source of my pain because I have continued to experience abdominal pain.  Truly, I can live with that.  It is the unrelenting fatigue and lack of stamina that I am wanting to fix.  My gastro dr said the next step is an ercp to look for what you have mentioned - spincter oddi and also stone stuck in the duct, but really, I think I'm just done with all this invasive testing.  I just want to get to the bottom of this fatigue.

      I'm interested to try a natural dessicated thyroid instead of the generic synthetic levothyroxine to see if I feel better with all of the Ts and not just T4 which is all levothyroxine is.

      About energy drinks or caffeine, I don't drink those.  I don't like coffee, so that's not a problem.  I've never been a soda drinker either, so no problem there.

      Thanks for your help.  My next step is to give blood next week.  I will be helping others for sure, and if I get some benefit out of it, that will be a little ligniappe.

  • watson49261
    watson49261 kristi44423

    Posted

    I feel same exact way..Iron Serum 174..Billirubin 1.6.. I also found out I have a vitamin D defficiancy...Are you feeling any better..? ..I am always so tired..
    • Cb4771
      Cb4771 watson49261

      Posted

      Hi same here. My billiruben is 1.6, vitamin D was low at 30 and high Iron saturation level at 65%.

      Did you ever find out what was wrong?

  • Cb4771
    Cb4771 kristi44423

    Posted

    Hi I am male and 46. I have been feeling the same way since 2015. My Bilirubin is high on every test and my Iron saturation is 10 points higher than "lab high". My vitamin D was at 30 and I had low potasium. Did you ever find out what was wrong?

  • marjolein84195
    marjolein84195 kristi44423

    Posted

    Hi Kristi,

    Just came across this thread. Have you been tested for hyperparathyroidism? 

    Your hyperparathyroid glands are located around your thyroid gland. Hence their name. They're not the same as the thyroid gland. 

    If they're overproducing their parathyroid hormone, this will trigger calcium to be released from your bone marrow into your bloodstream. Too much calcium in your blood can cause the symptoms you mentioned and more. 

    The only cure is to have the overactive gland(s) removed. 

    The blood tests needed to test if you have this, and they all need to be done at the same time, are:

    * serum calcium + either corrected serum calcium concentration or ionised calcium;

    * parathyroid hormone

    * vitamin D

    Even if only calcium is high  there is a chance you have normohormonal hyperparathyroidism. Even if only parathyroid hormone is high there is a chance you have normocalcemic hyperparathyroidism. 

    Most labs show calcium is in range when it's not over 2.6 (10.2 US value I believe). Unless you're a teenager this is wrong. Adults of 35 or over especially need to have calcium below 2.5 or "in the 9s" in the USA. Please don't let any doctor tell you it's ok if it's higher because it simply isn't. 

    I hope you'll find some answers soon. Please keep us posted as able. 

    Kind regards,

    Marj 

  • GillianA
    GillianA kristi44423

    Posted

    Hi Kristi,

    I just ran across your post and hope that you are all better now!

    But just in case - reading about your situation made me wonder what might put up serum iron and transferrin saturation - and bilirubin - but *not* ferritin, that your doctors hadn’t already checked.

    So I went looking and ran across a book published in 2007 called "Diseases of the Kidney and Urinary Tract," edited by R. W. Schrier, which says on page 2414, "Normal or high serum iron with normal ferritin but microcytic indices points to the presence of thalassemia, or now less frequently lead or aluminum toxicity."  ("Microcytic indices" is med-speak for “red blood cells that are smaller than normal.”) 

    If you’re still have trouble and any of thalassemia or lead poisoning or aluminum poisoning seem like possibilities, it might be worth asking your doctor about them?

    I know that trying to figure out a source of lead poisoning in particular can be really tricky because lead is sometimes in all sorts of places you wouldn't expect it, such as in paint and jewelry and glassware and ceramics and kettles and imported herbal remedies and even some cosmetics. 

    Paint dust and retained bullets and soil contaminated by leaded gas and battery recycling plants and firing ranges are examples of common sources of lead exposure, but if someone has high blood lead levels for no obvious reason, detailed detective work can be required.   I remember reading about one poor lady who was a tea drinker.  Slowly her health deteriorated and the worse she felt, the more tea she drank in an effort to feel better - and it turned out her teapot was the culprit:  the glaze on the teapot was very high in lead.

  • MickeyRoss
    MickeyRoss kristi44423

    Posted

    1- Find a new gastroenterologist.

    2- Find a hematologist.In the U.S. only a Hematologist can treat Hemochromatotis.

    Many doctors are taught that if you do not have a high serum ferritin you do not have Hemochromatosis. This is not true. If your TS% is high and the DNA tested postive for hemocromatosis, you have it. However, if your TS% is high and your Serum Ferittin is low (iron avidity) is a problem.

    I Also had hyperthyroidism and genetic Hemocromatosis. (C282Y andH63D). After all that was done It was adrenaline insufficiency (Addison's disease) and Hemachromatosis.

    (I am not a doctor and could be wrong)!

    I Believe iron and copper fight each other for balance. High copper levels can cause hyperthyroidism. T4 uses serum ferritin to make T3 and also stimulate blood production, both of which lowers serum ferritin.

    High iron levels can also destroy the anterior part of your pituitary gland. One can have a high TSH and have low levels of other hormones.

    In the beginning I also seamed to have problems with wheat. I Tested negative for Wheat allergies and celiac disease. It was not gluten, it was the iron enriched flour. I now buy non-enriched flour and make my own bread.

    I Still had pain after several Phlebotomies.

    Wanting new glasses, my eye doctor believed I had Wilson's disease (copper overload), he was not postive as he never had such a patient. My Ceruloplasimin was below normal. Unlike Wilsons disease, My urine showed almost no copper and my DNA was negative. It was Addison's disease. Cortisol removes copper from the organs causing the buildup of copper in my body.

    After taking Methylprednisone (2mg twice daily), my seruim ferritin started to go up, my TS% went down, my thyroid levels became normal, my energy levels up and pain is down. I will be on prednisone for the rest of my life.

    However i am still dealing with stage 3 NASH (liver damage). due to my late diagnosis. I Have to watch my diet, no alcohol, no shellfish, a low fat mediterranean style diet.

  • dena60747
    dena60747 kristi44423

    Posted

    Hi same here. I was diagnosed with Gilbert's Syndrome 4 years ago and alwasa have high indirect and total bilirubin.(2-4).

    I have read a papers in Nature recently that show GS sufferers have significantly higher serum iron and transfeerin saturation. Dont worry!

    Nature Sources

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