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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Have you had your vitamin D levels checked? I suffered with a lot of you symptoms and my gp did bloods including vit d.
it came back so low that I had to have a shot immediately, (tablets take a while to make a significant difference). Within three days I felt so much better, and in a week was back to normal. Now I take a tablet once a month to keep my level steady.
Good luck.
Read the Gilbert's syndrome forum - you will find that a lot of people with GS do not agree with your dr.
Try donating blood every 3 months. With GS, diet seems to be significant - i.e. finding the right foods for you, and eliminating those that make you feel bad.
Also ask for a Vit B12 test. If low, get injections - the tablets will probably not work for you. If vit D is low as per diazcat, Vit D3 forte drops work excellently. Some of us just do not absorb it in tablet form.
Keep monitoring your ferritin, etc. but you would not be feeling like you are with low ferritin. Other non-HFE disorders would give you a high ferritin. Are you still menstruating? This could keep your ferritin low but not explain why you feel like you do.
I do know of some people with both haemochromatosis and GS, but one HFE of H63D (non aggressive) should not make you load iron anyway.
It is good that your dr has tested you for hp and celiac because they can make you anaemic, even while you had haemochromatosis.
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
My vitamin D was deficient (26). The gastro gave me a prescription for D2 back in May when I first saw him, and I took one capsule every week for 12 weeks. Meanwhile, I purchased vitamin D2 and K2 drops where each drop is 2000iu D3. I took 5 drops of that each day. My vitamin D level climbed up to 88 by the summer, but I never felt any change in stamina or fatigue. I still use the D3 drops daily, but only one drop. Maybe for me, vitamin D is something that will take some time before I am able to feel the effects of being at the right level. Thank you so much diazcat for your help.
Hi sheryl. My B12 was around 400 when I went to the obgyn last fall, and she gave me a B12 shot to see if that would help. I purchased methly B12 tablets that I take. I just got another shot a few weeks ago at an urgent care clinic before I went on vacation to see if by chance that would give me more energy for the trip. The shots raise my level but don't seem to make a difference with how I am feeling.
I began taking the vitamin d3 drops daily in May and am still continuing that.
I still get my period every 3 1/2 weeks and haven't missed one in 8 1/2 years (since birth of last child). My periods are heavy so that's not fun.
I have been planning to donate blood to see if I felt better, but I didn't want to do anything that could change my blood levels while I was working with this gastro for some answers.
Once I get that final "no idea" diagnosis, I am going to the bloodbank.
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.
Good cholesterol (HDL I think - keep getting them mixed up) is the precursor for vit D. My good cholesterol is low so makes sense my vit D is low. I am trying to increase it although I eat all the foods that are supposed to increase good cholesterol. Earlier this year, I added coconut oil to my diet which is supposed to do it too.
Your problems may lie with GS. Those with GS disagree that it is harmless to their wellbeing. Also get your copper levels checked (Wilson's disease).
What had you tried to tell us that the Emis Moderator deleted?
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. ..
Sheryl if her liver enzymes are up it could be a underlying bilary issue arising. like bilary dyskineas or sypinchter oddi dysfunction bad gallbladder.or that she drinks energy drinks or caffeine.
Thats what cause me to have high iron as well. was those two dysfunctions that i mention above which caused liver iron deposits over the course of two years,plus her dna test came negative like mine back then.... I don't even think it's her thyroid cause if her digestive system is off you lose b12,b6, and choline, and gluthalione deficiency. all metabolize in the liver stomach and instestines... and all are nutrients we get from everyday food like meats, veggies, dairy, breads, nuts, etc...poor thing... I hope she gets better. ...
I have to proudly say that my cholesterol readings are excellent: HDL 85mg/dl, LDL68 mg/dl, and total cholesterol 164 mg/dl. I've been doing some reading on GS and am finding a lot of people with the syndrome have complaints similar to mine. It makes me wonder why every medical site says there are no symptoms with GS.
What the moderator deleted was my reference to a dna testing company. I used the company's name, so that whole part of my post was removed. Basically, I had it done last spring, and I have since run the results through a third party for interpretation. I do have a heterozygous snp on the SLC40A1 gene which is where a mutation would be located for ferroportin disease type 4 which is autosomal dominant, but I don't know if this particular snp could be pathogenic.
Thanks for the tip about copper. I will check that out.
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.
Regarding increasing vit D, I had great success in terms of blood levels of vit D with the D3 forte drops but I can't say there was any difference in the way I felt. However, it is good to get that in order.
Quite honestly, the biggest difference I have felt was from taking the simplest remedy of all. Daily aspirin - 100mg per day to be exact because we don't have 'baby' aspirin in my country. In less than a week, the fatigue and body pain lifted. I did still have early nights but I was doing more during the day. Gradually increasing that time, if only to work on my emails. Before that I just crashed and could not read, watch tv, nor email.
However, the actual reason I started aspirin was because my blood was so thick and black it was hugely difficult to venesection. Now it runs red and easy. The rest was a major bonus.
Apparently a small dose of aspirin works wonders for a number of issues - a lot because it treats unknown inflammation. It felt like my fine capilliaries throughout my body was clogged up with iron which is now freed up. My haemotologist/oncologist is now thinking there might be something in it, having heard me complain for years about these problems.
But find out what your cause is before embarking on trialling aspirin. You need to find out if aspirin might cause internal bleeds. But something I recently read is that it protects the stomach lining. But that came from a pseudo medic and I have not investigated scientific medical research yet.
Good luck with the GS.
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..
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?
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?
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
Hi- Coconut oil increases bad cholesterol (LDL cholesterol) which is bad for heart disease. IF you have low good cholesterol (HDL) coconut oil wont help to increase it. You increase it by eating more omega 3 fatty acids which are found in seafood (particularly oily fish), olive oil (and other plant oils, excluding coconut oil) and walnuts.
I don't think there has been any real cause and effect association between cholesterol levels and vitamin d identified. However, Vitamin D does seem to be lower in those with higher body fat (it is stored in fat and therefore is not is not circulating in the blood stream). People who are overweight tend to have higher LDL cholesterol levels and lower HDL cholesterol as they generally eat a diet that favours that cholesterol pattern (eg more saturated fats from processed foods and meats Vs lower fats from unsaturated fats).
Anyway- the real point to that post was please don't have coconut oil to help with cholesterol levels- it will make it worse!
There are two camps on the use of coconut oil and I have gone for the positive one. My diet is full of omega 3 fatty access, olive oil, avocado and walnuts, to no avail in increasing my good cholesterol. A lot of people believe avocado is bad for us too because of its fats and won't touch it.
There is plenty of research and reports on cholesterol and vit D, which is a hormone. The first one that popped up just now is from the Heartuk but there were plenty more from government reports. While Heartuk is not a research institute, they do get their information from research. The endocrine glands, adrenal glands, etc are hungry for good cholesterol to produce steroid hormones (which include sex hormones). I don't mistreat my health with fads, I do a lot of reading of research before I take on something that is controversial.
I have very little body fat (I wish I had more), my good cholesterol is low, and my Vit D was very low. I was advised by my gp to eat these foods to increase my good cholesterol to increase my Vit D and other hormones. The only food missing from my diet was coconut oil, which I have remedied. My Vit D level has increased considerably, and I have not gained weight, nor compromised my heart.
I guess it comes down to the individual and how their metabolic system works.
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.