Help, I need input. Feel lost.

[kisekishiawase]

hello and good day to you
i hope you would be willing to share some info/inputs.

first thing, i wanna ask about the blood volume test. are Hematocrit and Hemoglobin the test to measure blood volume? or it requires another test?
i've been trying to get to the root of my illness or at least some shade of light since the doctors that i've been gone into didn't care enough/unable to identify it and just gives me drugs which didn't really help me at all.
i suspect that my symptoms had some correlation with neuropath/immunity too.
my main symptoms bad palpitation(heart pounds hard evethough its not fast) plus/or tachyardia(HR fast but eventhough it doesn't pound hard) and digestive problems. (bloating, IBS, many food intolerance, gas, reflux, etc). i often get palp+tachy from eating too.
some people mention about POTS. which the symptom was HR rise >30bpm when standing up and that happens to me. but no fainting. although sometimes got blackout but not often. BP lying down 85/55 and it didn't drop when i'm standing. so im not sure if i have POTS. (if i go upstairs i get bad palp+tachy, that being said it's hard for me to function fully since i feel like damaged!)
also sometimes i can hear the rush of blood when im standing up.
lately my HR when im lying down before sleep is slower than years ago: around 50bpm, but when im standing, doing things it jumps up easily around 100bpm
i think i have poor circulation due to uneven body temprature parts. i have cold hands and feet often. and sometimes arms.
there was strange thing happens sometimes: i get night cold sweats and when im lying on my left side half of my right side body (from head to toe) gets cold while the left side stays warm. and when i changed side the opposite thing happens. why is that??
i get cramp so easily. stiff and sore, or is it muscle weakness maybe?
i get CSA(central sleep apnea, autonomic breathing issue) attack sometimes randomly since a child. sometimes i noticed when i'm sleeping my throat muscle tightening/closing so it blocks my breathing.
also sometimes got tachy+palp attack when i'm sleeping.
been on echo, ecg, holter, t3, t4, sgot, sgpt, creatinine, blood count, calcium, etc. they said it's still ok. and other tests but still no clue.

any reply will be appreciated. and thank you for reading

 

[peggy-sue]

The haematocrit is a measure of the ratio of plasma to red blood cells, most of us with ME tend to have a low volume of RBCs.
The total haemoglobin is a measure of how much haemoglobin is in the red cells - it will tell you nothing about volumes.

(if the RBCs are deformed they take up less space, hence the low volume found with haematocrits.)

It does sound like you have POTS, and a load of other familiar sounding ME symptoms, but I'm afraid I can't answer your other questions - here in the uk we pretty much just have to suffer them - there's no testing or treatment given.

 

[kisekishiawase]

peggy-sue: thanks for answering.
hmm i see. but i havent fully understood it. IF.. the blood count test HB, hematocrit still in normal range. do i still need to get the volume blood test according to my symptoms (was there a possibility that the caused of my health issue) ? i read that for volume blood test it requires to inject some chemicals which sort of worries me since im so sensitive to many things. i dont want to get bad reaction such as palp or tachy.
seriously? in UK? here in my place the medical hasn't advanced that much especially compare to UK im sure.so yeah thats why ive been suffered a lot.

 

[peggy-sue]

I don't know of anybody in the uk who has managed to get a blood volume test.
My gp did a haemoglobin - then told me it was the same things as a haematocrit.

(I used to work in hospital labs - I've performed both tests myself. I know they're completely different things!).

Having low blood pressure which does not respond quickly to you standing up is why your heart will race.
It beats faster to compensate for the pressure not rising.

I used to suffer a lot from cramps and restless leg syndrome. I started taking a good dose of Magnesium Citrate every day - with a supplement of equivalent molecular dose of calcium + VitD so that it doesn't leach calcium from my bones.

 

[SOC]

kisekishiawase
You will find a lot of helpful information if you click on the Home tab at the top of the page. One of the first things you should look at is Treating Orthostatic Intolerance. You could do the Simple Test for Orthostatic Tolerance on the page and take the results to your doctor and ask for appropriate treatment.

Another very useful document for you is the ME/CFS Primer for Clinical Practitioners. I have found it easier to work with unknowledgeable doctors if I bring in a copy of the Primer with parts highlighted. You will want to read (and ask your doctor to read) Section 3 Pathophysiology. Section 5:8 Management of Related Symptoms, especially the part Orthostatic Intolerance and Related Conditions which has treatment suggestions for OI that your doctor might be willing to try.

Your OI symptoms are similar to mine. I have improved significantly with fluid loading, 0.2mg of Florinief, and medication for tachycardia as described in the Primer.

 

[kisekishiawase]

Thanks for the link. its really long but i try to eat that hopefully i can digest that.
Ive read half of it. there seem to be tons of tests required??
i forgot to mention that sometimes i hear the rush of blood too when im standing up. i thought it was just in my ear. does it categorized as OI as well?

It seems to me though its got to do with neuropath and immunity so it affected very wide range issues? and tend to get confusing and similiar to other disease? some hits me though but some doesnt.

the cardiologist gave me beta blocker which i took for years although it didnt really help much but ive been trying to off that since i dont want to depends on drugs but i still use it occasionally. and the doctor told me to exercise because he said im sick for going up stairs because i dont train/exercise (tons of people said it) then ive tried exercising regularly but it didnt change much. so im stuck.

@peggy-sue thats a surprised :O the doctor check for blood count because i look pale but it still in normal range. many times when i talk to psychian they said the information that i get wasn't valid maybe i have to bring medical journal or something so they would pay attention more? :-/
last time i want to get check for food intolerance that has been disturbing me but they didnt approve and said they dont want to debate when i push them. so i got nothing but have to pay a lot.

hmm the restless legs syndrome interested me. because when im about to sleep i feel my legs and arms muscle really stiff and i have to move them to find position or contract them or something to find relieve but its only for temporary. kind of bothersome. i try massaging but didnt help much. i dont know if thats the same as restless legs syndrome

 

[Crux]

Hi kisekishiawase;

I agree that there can be electrolyte imbalances involved with your symptoms.
Some other low minerals may be a cause. Maybe iron, but that should be tested.

Some of the symptoms could also be from B12 deficiency. Tachycardia is considered to be a rare symptom of B12 def., but I had it.

There isn't a consumate list of B12 deficiency symptoms, but here's a link to one:
https://b12d.org/b12-signs-symptoms-assessment

 

[kisekishiawase]

Crux they checked for anemia: bloud count ferritin but it appears still in normal range.
i was thinking of getting b12 blood test. but from someone here said that it wont really show if youre defience in vit b12 from just blood b12 test.
i read about electrolyte imbalance too and mineral imbalance but its hard to detect.

 

[Crux]

The serum B12 test is the least accurate. It's probably telling when it shows a low count, < 500. Otherwise, if there are symptoms, a trial for 6mths. is better. The test for homocysteine can involve folate, B6, and B12 deficiency, so it's not specific. ( Other things can raise homocysteine too, like low thyroid.)

Urine MMA, ( methylmalonic acid ), is supposed to be the most accurate, but, it still hasn't shown to be conclusive for everyone. There are some more tests, like for active B12, and B12 binding.

One thing that has helped me, is to have the results of my tests sent to me, so I can examine, and look them up. Sometimes the docs miss things. Some of the ranges for normal are too wide, so if something is low normal, or high normal, there can be a clue.

I saw on another thread that you are going to try hydroxocobalamin first. I think that is a good idea if you are having anxiety. The methylcobalamin can be stimulating. ( I take both.)

Once you begin, it may take a while for the cardiovascular symptoms to normalize. Some people find that they need more potassium, but with your low BP, it may be better to have salt with potassium foods. ( I'm guessing.)

 

[kisekishiawase]

Crux thanks for your advice
so active b12 is the test that more accurate?
i read about cal, mag, potassium balance issue. too much or too little one of them could cause tachycardia/palpitation. but some said the common blood test for cal, mag, pot isnt really accurate either to detect that matter..

i think ill add this post from another thread to this thread maybe if someone knows

i got this problem many times (waking up at night due to tachycardia and palpitation) since 3 years ago. eventhough i got my tachycardia and palpitation since long ago way before that but it didnt wake me up at night, i noticed sleeping really does play big effect.
sometimes almost every couple of days after i sleep for >6hours i get bad palpitation and tachycardia and then after waking up for 1 hour it went down. which makes me afraid to come back to bed.
even only for changing position on bed causing my heart goes up and pounding hard.
lots of times when i spent days with lack of sleep, eventhough i got tachycardia but i noticed it doesnt pound hard(palpitation) then later when i pay my lack of sleep and sleep more those days later usually i got worse palpitation (heart pounds hard). before it gradually got better again if i continue to restore my sleep.
another weird thing. there are days when i feel bad during day but when night about to came usually it got better. but sometimes there are days when i feel ok during the day but when i go to bed lying there it got worse.
the palpitation actually worse then tachycardia sometimes because it pounds really hard even if its not that fast.
i also noticed there are times when my heart pounding when im about to doze off. anyone ever experienced it too?

 

[Shell]

I have had (and still get occasionally) night time palps. Still often get them when I first go to bed and occasionally get woken by them.Evenings seem worse for tachy altogether for me.

I have Inappropriate Sinus Tachy. This is thought to be related to POTS. My upright heart rate (without meds) gets silly.
I'm on meds now and things are a bit better. While the palps still happen and I get angina they are much better.
Various dysautonomic problems seem pretty prevalent in Fibro, and ME/cfs. It's so prevalent in fibro that research suggests that fibro is a form of hyperadrenergic POTS.
It might be worth getting this tested for if you can get a sensible referral.

 

[caledonia]

For what it's worth, I get a racing, pounding heartbeat during sleep a lot too. Since this is also a symptom of sleep apnea, I had a sleep study done, but no apnea was found.

I've found that either eating beef instead of chicken, and/or taking B12 will reduce the symptoms. (Beef contains more B12 than chicken.)

When I get to the point where I can increase B12 more, then I expect the heartbeats will go away alltogether.

My B12 showed up about 800 on a serum test, which is smack dab in the middle of normal. However, I have many deficiency symptoms, and a partial methylation block (by testing) and bad B12 SNPs (MTR and all the MTRRs).

I also get the twitchy foot thing when falling asleep thing. That's lack of magnesium. You can supplement with magnesium temporarily to get relief. However, the root cause is likely leaky gut, which will cause magnesium to leak out as fast as you put it in. You need to get this fixed before you address methyation or the problem will get worse, which can be dangerous.

A 4R gut rebuilding program seems to be the best way to address leaky gut. I've been taking herbs to kill candida for about the past week, and my magnesium problem, and thus sleep, is improving already.

 

[kisekishiawase]

Shell fibro can caused tachy/palps?
caledonia i know about sleep apnea but its different. cause i wasnt breathless and happens even after i woke up for 1/2 hours. the b12 serum test is different than common b12 blood test?
i only have magnesium oxide i didnt know about the absorption and bioavailability issues. im thinking of buying a different form but unsure which one. im thinking glycinate.
last week i went to gastroenterologistand asking to test for leaky gut but he just brush me off

 

[Crux]

Crux thanks for your advice
so active b12 is the test that more accurate?
i read about cal, mag, potassium balance issue. too much or too little one of them could cause tachycardia/palpitation. but some said the common blood test for cal, mag, pot isnt really accurate either to detect that matter..

The holoTC , or active B12 test seems to be more accurate than serum B12. From reviews that I've read, most researchers agree, but of course, there are some who disagree. ( I haven't had it, but I would, if given easy access.)

I've relied on a Comprehensive Metabolic Panel for electrolyte status. It doesn't include magnesium, I've had a serum magnesium test. I understand that RBC is more accurate, but haven't tried it.

 

[caledonia]

Shell fibro can caused tachy/palps?
caledonia i know about sleep apnea but its different. cause i wasnt breathless and happens even after i woke up for 1/2 hours. the b12 serum test is different than common b12 blood test?
i only have magnesium oxide i didnt know about the absorption and bioavailability issues. im thinking of buying a different form but unsure which one. im thinking glycinate.
last week i went to gastroenterologistand asking to test for leaky gut but he just brush me off

I don't know why I said serum (it was very late last night). But anyway, it was just a good old regular B12 test you get from your doc.

Mag glycinate is fine. That's what I use.

Apparently, you can have sleep apnea without being breathless. The other thing it could be during sleep is acid reflux. But anyway, yours also occurs in the daytime. My mom (also had ME/CFS) had something like what you're describing and she ended up on a beta blocker. Ok, I went back and reread, and you say you're also on one, but you want to get off.

Leaky gut is not mainstream, so a gastro doc is not likely to be knowledgeable about it. You can order a test yourself without a doc. There are links in my signature. You can also trial B12 without a doc.

You can also try to find a naturopath or holistic doc who should be more knowledgeable about these alternative things we're discussing. A functional medicine doc should know how to treat the gut. Or you can try to educate and treat yourself.

 

[kisekishiawase]

caledonia i see thanks for your input i really appreciate it. i went to the links on your signature for intestinal permeability test but seems like its for people in the US
yeah i took beta blocker in the middle of 2012 i got better and can reduce it. but this lately i got terrible i guess it had to do with sleeping and digestive.
im interested in b3 coenzym but im also worried if its gonna cause bad effect instead.
i only knew 1 naturopath here i went there hoping he could run tests on me turns out he ask for some of my test results only like holter and prescribe me with d-ribose, q10, hawthorn, taurine, etc some i already know and took. i was kind of dissapointed cause i thought hes gonna run tests on me.
Crux RBC? i just know about RBC red blood count

 

[taniaaust1]

Sounds like your big thing you need may be to get your POTS treated. If I was you, I'd be focusing on that (seek out someone who specialises in this).

a 2hr GTT test with the insulin result included may be a good idea re your food issues, gas and bloating. Those things are common hyperinsulinemia symptoms. I was on prescription drugs for my reflux/GERD which is completely gone now (along with also some of my other symptoms which were helped too) due to finding out I had insulin issues and then being put on a special diet for those (lower then a low carb diabetic diet)..

 

[Crux]

Hi,
RBC is an acronym for red blood cell. The lab can measure red blood cell amounts, as opposed to serum amounts.

--About your digestive difficulties; Besides reflux, do you get nausea? any vomiting? Has your sodium ever been in the low normal range?

I'm wondering if you may have lower stomach acid, or some endocrine dysfunction.

 

[kisekishiawase]

taniaaust1 ive been thinking to get insulin and glucose tests too.
i always got the glucose test only.
there was one time when i was in a bad condition that my fasting blood glucose level sort of high almost out of the normal range.
and after i eat too i eat 3 pears but the result sort of high almost out of normal range.
but months ago i tested and the fasting blood glucose level appears low really low.
isnt the treatment for POTS betablocker too?
Crux i dont remember if i ever got that tested but i guess i should have. maybe i should check. is that important?

update also vent:
it has been 4-5 days i felt terrible every morning after waking up cant even sit without my heart goes crazy. the palpitation really bad. tried valsava maneuvers, etc. always happen in the morning after waking up. take betablocker, hoping it helps.
dont know whats the caused but i guess lack of sleep this couple of weeks contributes to it. also i almost got my period so hormonal could also made it worse more or less, also digestive maybe cortisol plays a role too.
wanted to check for hormone but the time for the cycle is innapropriate since i almost got my period. so im confused.

 

[Crux]

I'm trying to help you figure things out by asking about test results and symptoms. But for now, I'm not sure either.

I think it's good that you are paying attention to symptoms and describing them so we might be able to help.