15 replies to this topic

[Samuel80]

I am 35 and have been suffering from undiagnosed fatuige for several years now. My doctor reffered me to a cardiologist due to low resting heart rate, usually in the low 40's in the morning and up to the low 50's in the afternoons. I have done numerous tests over the past few months, now im just waiting to see the cardioligist next month. Im afaid that he will suggest a pace maker.

My symptoms include

- fatuige
- weakness
- poor memory and overall brain function
- exercise intolerance(symptoms worsen for days after intense exercise)
- bouts of deppression(caused by the frustrations of not being able to get a diagnosis and people not beliveing me)

I have had so many blood tests over the years and all of them come back normal. My symptoms seem to match those of bradycardia. In my stress test I reached 85% of max heart rate. It took everthing out of me to get there. I felt worse for days after it.

The only thing that keeps me going is Ritalin, but I really dont like the way I feel on it and it doesn't last long. Without it I would stuggle to function. It seems to raise my heart rate into the 50's.
I have tried heaps of supplements but nothing really helps. Coq10 made my gums swell really badly. To the point that my teeth looked like they had halved in size.

I have a 3yr old and another one on the way. I want to able to do so much more with him, but the lack of energy is so restrictive. Its so frustrating.

Can anyone suggest anything to alleviate the symptoms? I have read a little about Myo-Inositol TrisPyroPhosphate but not sure if it would help. Any suggestions would be much appreciated.

[albedo]

Good you are consulting with a cardiologist for this. I am just curious if you ever tested (assuming it makes sense, I am not a doctor) also BNP and NT-proBNP and how much it is incl. the ref values of your lab. It turned high in the case of my wife and we are checking with her doctor their significance and what can be done about it. I am far to be competent to suggest you good supplements. I have read Nicotinamide Riboside (aka Niagen, a form of vitamin B3) as well as the entire B Complex might help with physical and mental energy but would ask your doctor first. Good luck for your condition!

[niner]

I agree with albedo that it's good you're seeing a cardiologist.  They won't immediately jump to a pacemaker if you have anything that can be treated medically.  There are a lot of possible causes for bradycardia; it would be better to figure out what the cause is, then look into treating with supplements.  Have you ever gotten a ferritin level, and if so, do you know what the value was?  Doctors might have referred to it as an "iron test" or something similar.   Do you have high blood pressure?  Take any medicines or supplements?  Do you smoke? 

[Samuel80]

Good you are consulting with a cardiologist for this. I am just curious if you ever tested (assuming it makes sense, I am not a doctor) also BNP and NT-proBNP and how much it is incl. the ref values of your lab. It turned high in the case of my wife and we are checking with her doctor their significance and what can be done about it. I am far to be competent to suggest you good supplements. I have read Nicotinamide Riboside (aka Niagen, a form of vitamin B3) as well as the entire B Complex might help with physical and mental energy but would ask your doctor first. Good luck for your condition!

  

I agree with albedo that it's good you're seeing a cardiologist.  They won't immediately jump to a pacemaker if you have anything that can be treated medically.  There are a lot of possible causes for bradycardia; it would be better to figure out what the cause is, then look into treating with supplements.  Have you ever gotten a ferritin level, and if so, do you know what the value was?  Doctors might have referred to it as an "iron test" or something similar.   Do you have high blood pressure?  Take any medicines or supplements?  Do you smoke?

Thanks for the replies.

I havent heard of the BNP test. I will ask my cardiologist about it when I see him next. I have used a B complex multi in the past. It did help, but I really think there is an underlying condition thats starving my body of oxygen and no amount of vitamins will get me to where I need to be.

I have hemochromatosis, but only carry one gene. My iron levels have always been in range. I only take ritalin, dont have high blood pressure, and dont smoke. I have a good diet but put on weight easily.

Has anyone used Myo-Inositol TrisPyroPhosphate and had success with it?

[niner]

I havent heard of the BNP test. I will ask my cardiologist about it when I see him next. I have used a B complex multi in the past. It did help, but I really think there is an underlying condition thats starving my body of oxygen and no amount of vitamins will get me to where I need to be.

I have hemochromatosis, but only carry one gene. My iron levels have always been in range. I only take ritalin, dont have high blood pressure, and dont smoke. I have a good diet but put on weight easily.

Has anyone used Myo-Inositol TrisPyroPhosphate and had success with it?

 

 

Iron overload can lead to cardiomyopathy or electrical disturbance leading to bradycardia.  When you say that you have only one gene, I'm guessing that means that you are a heterozygote for one of the possible mutations of the HFE gene.  It's possible to be a heterozygote for both of them (C282Y and H63D) as well.  If you are heterozygous for only one, then your absorption of non-heme iron (the type found in some multivitamins and in fortified foods such as breakfast cereals) may be somewhat higher than normal, but if you are heterozygous for both genes, then it will be significantly higher.   Definitely do not use iron supplements or multivitamins with iron.  You may want to avoid iron-fortified foods as well.  IP6 can help to reduce iron absorption, and might be a good thing for you.  Do you know what kind of iron tests you had, and what the levels were?  The most common test is ferritin, and the upper end of the "normal" range is high enough to be unhealthy.  Have you measured your blood sugar and/or hemoglobin A1C?   C282Y heterozygotes have been found to have higher fasting glucose levels that normals.  That could be consistent with the easy weight gain.

 

It's good that you are finally getting to see a cardiologist, and it will probably be possible to sort this out and feel a lot better.  You would probably get some relief from c60 olive oil, which would improve your mitochondrial function.  However, I'm concerned about masking the problem and making it harder to correctly diagnose.  If you can wait until after you see the cardiologist, that might not be a bad idea.  Once you take c60 olive oil, it stays in your system for a long time.

Edited by niner, 28 February 2016 - 07:03 PM.

[Samuel80]

I think I had ferritin tests. My GP just said I needed to keep an eye on my iron levels, but at the moment they were in range. I will get a hold of my latest blood results.
My blood sugar levels are fine. I done a test where I had to fast than drink some sort of sugary fluid. It came back fine.
I have some c60 at home that I plan on using after I see the immunologist and cardiologist. I started taking it, but I don't want to obscure any results.
The last few days have been particularly bad. My resting pulse was 37 this morning and rose to 42 this afternoon. Not feeling good at all.

[Harkijn]

Just to mention one other possible cause: your symptoms fall into the extremely wide range of symptoms that occur when people have a vitamine B12 absorption deficiency. I suggest you have your B12 levels checked and ,if they are low-normal or low, that you get B12 injections or sublingual tablets (methylcobalamin).

Even if this is not the root cause of the problem, this may give you some relief from your troubles!

[Samuel80]

I just found some old iron studies

Iron 28.7 umol/l(5-30)
Transferring 2.3g/l(2-3.2)
TIBC 52(46-70umol/l)
Saturation 55(10-45)
Ferritin 149 (30-300

Saturation and iron were a little on the high side. I will try to get my latest ones. These are over a year old

[niner]

Well, it looks like hemochromatosis.   These numbers wouldn't be terrible if you were asymptomatic, but it would be good to get them into a healthier range.   One option is giving blood on a periodic basis, and IP6 is another.  Given your current state, giving blood might make you feel pretty awful (if not comatose...) so I'd wait on that.  The cardiology report will be the key to sorting things out, I suspect.  Did your physician do an EKG on you?  The cardiologist certainly will, but it's an easy thing to do.

[Samuel80]

I got some ip6. I think I will take it periodically. I need to get blood work done every 6 months.
So I'm going in for a pacemaker next Thursday. Nervous to say the least. Anyway I'm hoping it will be the answer and I feel a lot better.

[Samuel80]

Posting an update on my condition. I had a pacemaker inserted in late March. It has not done much. Less lightheaded and thats about all. I feel worse than ever really. I am existing, not living, I dont want to keep existing. 

 

I have had some more tests done through the doctors, iron is  now normal. My thyroid levels have always been up and down. My symptoms suggest hypo but bloods suggest hyper. I have seen an endocrinologist and he was satisfied with all my hormones. They did find a nodule on my thyroid but were not concerned.   

 

What is interesting though, I went to a naturopath through the week and had a Thyroflex test. It claims to be 98.5% accurate. The test revealed that I am severely hypothyroid. I am not very optimistic though, considering I have been misdiagnosed many times. My zinc levels were low on a taste test, I have been supplementing zinc for the past month. 

 

I am trying to compile a list of possible conditions that could be causing my symptoms and what test are needed to rule them out. I guess I want to start the process of elimination. This is what I have so far:

 

-hypothyroidism (blood work?)

-iodine deficiency (blood work?)

-methlyation issues

-vitamin D deficiency

-pyrrole disorder 

-adrenals

 

 

Any input would be appreciated

Edited by Samuel80, 17 December 2016 - 03:46 AM.

[Harkijn]

Well, I still think B12 absorption troubles should be on your list. If a blood test shows a value lower than 600pmol then there is reason to assume that you might benefit from sublingual Methylcobalamin.

 

Do Australians have access to 23andme or a similar company where they can chart your (epi)genome? Only a few drops of spittle are needed to chart your genes and  to find possible risk factors....

I hope you'll be allright!

[Samuel80]

Im not sure if there is a service like 23andme here.

 

B12 was in the right range in my last blood test. I tried Methylcobalamin before with little success, it gave me anxiety, but I was using Ritalin at the time and it gives me anxiety sometimes. The naturopath has ordered a series of blood tests that might shed some light. I'll add B12 to the list. Thanks for your concerns.

 

-hypothyroidism (blood work?)

-iodine deficiency (blood work?)

-methlyation issues

-vitamin D deficiency

-pyrrole disorder 

-adrenals

-B12 deficiancy

Edited by Samuel80, 17 December 2016 - 11:55 PM.

[zorba990]

What are your sodium and potassium levels / kidney function ? Give us a full CBC if you have one.

Re:"exercise intolerance(symptoms worsen for days after intense exercise"
Suggests sodium or other electrolyte / mineral depletion -- check rbc magnesium as well. Does a hot bath evoke symptoms?


Re:"Coq10 made my gums swell really badly. To the point that my teeth looked like they had halved in size."
This is odd, have you checked common gum infection bacteria like anti strep antibody test? Does deep flossing, oil pulling, or the like evoke symptoms?


IME 250 mg pantothenic acid under the tongue directly combats adrenal fatigue if that is the issue.


All of this may be moot since you have the pacemaker now.....

Edited by zorba990, 18 December 2016 - 01:47 AM.

[Dorian Grey]

Body temperature can give clues to thyroid issues and is an easy thing to start monitoring.  

 

http://www.stoptheth...om/temperature/

 

When you say your iron is normal now, is ferritin below 150, and TSAT (transferrin saturation) in the middle third of normal range?  Doctors consider anything within normal range to be normal, but if you're near the margins in any of your iron labs, I would keep this on a front burner.  The upper limit for ferritin is set quite high by most labs, and is the threshold for clinical iron overload and not optimal health.  Did the IP6 help at all?  How long were you on this?  

 

Both thyroid issues and elevated iron can contribute to mitochondrial dysfunction, & the mitochondrea are responsible for the energy of life, ATP.  Look into mitochondrial dysfunction for more info on this.  A mitochondrial membrane therapeutic like PPC (polyenylphosphatidylcohoine) brand name "Essentiale Forte" might help with this.  SAM-e (S-adenosyl methionine) is the best fix for methylation issues.  

 

Have you tried coffee/caffeine?  Young folks often overlook this simple fix, but us oldsters swear by it.  If you've had trouble with caffeine in the past, tolerance can be achieved quite easily with a little work, and the beneficial effects do not fade.  The theobromine in chocolate also has remarkable qualities.  The heart beats more strongly, with a bounding, more effective pulse.  

 

Keep looking at this from different angles and you're bound to get to the bottom of this problem.  

 

Godspeed, and Best of Luck!

Edited by synesthesia, 19 December 2016 - 07:23 AM.

[PeaceAndProsperity]

Acetylcarnitine is many times superior to coq10 when it comes to strengthening the heart, making it capable of exerting more. But whether this will reduce your pulse or increase it is another thing. Maybe you have an enlarged heart? That seems to coincide with low pulse rate.