High transferrin saturation% but normal ferritin

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.

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?

 

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.

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.

 

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 Sheryl, it does look like you were able to tackle all the issues one by one and bring it under control. Feel happy for you. It must have needed a lot of determination and focus in these three years. I too have been suffeing from aches and pains for years especially in my joints, muscles despite keeping fit with daily exercise and pursuing sports since childhood. Each time all these years my blood tests recommended by my GP would come out normal and finally after asking for more in-depth tests due to abdomen pain every night found out recently that my ferretin levels were high around 600 with bilirubin at 1.3 transferrin saturation at 44%. Negative for hemochromatosis. I am slowly trying to bring it under control with diet. Body pains and aches continue. Was curious to know if you came across any other underlying issue that was leading to these problems. Other than IBS I really have not been dealing with any other problem so far. 

Hi, I have been away for months and now trying to catch up.  I have lost the context of your query.  I think the underlying issue that lead to these problems were probably the haemochromatosis which the dr took 9 years to diagnose so a lot of damage occurred.

Long ago I discovered that my body does not digest sugars and starchy carbohydrates very well, resulting in unreleasable gas the size of gestating twins, accompaning pain and my waist increasing in size.  Eliminating sugars and starchy carbohydrates improved the situation.

I was also found to have Helicobacter Pylori which caused ulcers in my duodenal and that returns now and then despite massive antibiotic treatment.  HP thrives on iron.

So I don't know if this answers your question.

 

Thank you for your response. It was quite informative and seems to be confirming with what i am slowly learning. I too am scheduled to undergo my gastro esophagal tests tomorrow to check for possible ulcers / HP related.

Hi all,

Thank you so much for this thread, it's been really interesting to read and resonates strongly with my current situation! Any thoughts would be so massively appreciated as I'm very much despairing not being able to get to the bottom of it.

As an overview, I'm a 31 year old male and have been struggling with nausea, dizziness and feeling fatigued/unwell for the past two years with no luck. Physically I am ok and can exercise when I get going but I do feel the symptoms are getting worse.

• Blood results flag consistently high Transferring Saturation of between 77 - 100% over the past 4 months tests, however my Ferritin isn't over the 'normal' parameters (346). With that, my Haematologist doesn't think it diagnoses Haemachromatosis. In particular that Ferritin levels of that amount wouldn't cause symptoms to the degree I'm experiencing. I have had the HFE gene test also which confirmed I was only Hetero for H63D, which shouldn't indicate Haemo symptomatically.

• Vitamins are normal-ish, with my B12 being a little bit down on one test and Vitamin D is ok.

• Liver function tests are all normal, including Bilirubin.

• Originally thinking it was a Gastro issue, I had an endoscopy and hydrogen breath test - nothing flagged.

• I've also tried numerous dietry experiments - lactose, gluten, Low FODMAP - nothing.

Thank you again and as mentioned, any thoughts appreciated...

E

Hi ERUK, This is a difficult one in relation to haemochromatosis. Your TS% is a strong marker for haemochromatosis, yet your genetic test revealing only one HFE gene belies that. Ferritin should not be >300, and this could be because of some inflammation that is plaguing you.

There is such a disease as ferroportin, related to haemochromatosis but, having not experienced it, I have little knowledge of it.

Apart from having your pituitary gland hormones tested, you need to be assertive to get your dr to come up with appropriate answers. If any of your pit glands are out of whack, it causes a number of issues, particularly testosterone. I assume you have had thyroid tests - that is usually a common test, but then there are adrenal, growth hormone and insulin. Even males can be found to have high prolactin which throws other hormones out.

Another that comes to mind is Gilbert's disease but I think your Bilirubin results probably preclude that. You could try donating blood now and then at your blood bank IF they will accept you with your health issues.

I have spoken to a number of people who feel so much fresher for a while after donating (even though they don't have haemochromatosis).

If your B12 is borderline, you will probably benefit from B12 enzyme injections.

Has the gastroenterologist done a good examination? Let us know how you go.

Hi Sheryl,

Thank you so much for your detailed response, it's much appreciated. It has proven a tricky one indeed, I'll absolutely look into your thoughts in more detail.

The Gastro investigation hasn't flagged 'anything significant' yet, except the hydrogen breath test did acknowledge excessive bacteria growth in my small bowel.

I have Gastro and Haemo follow up appointments over the coming months in which I'm hoping something will be further actioned...

With thanks again,

ER