Low Vitamin D and Ferritin + Heart Issues

[SeanQHX1]

Hi everyone again!

I just recently had both my vitamin D and ferritin checked recently and found that they are worryingly low. This is despite taking the right amount of iron in suppliments and around 4000iu of vitamin D in total with suppliments.

My ferritin and iron levels have actually been low the entire time I've been ill since 2016 with my mysterious "Donnington Disease" illness. However, the doctors who gave the tests just ignored this issue and I found out from looking back at my old medical records, which had some notes on the lab results saying that I could have an iron deficiency.

I have pretty much developed many symptoms of iron anemia over the years including really pale skin that's dry, thin and scaly all the time and is getting thinner, brittle nails and hair that's really dry and going a sort of dull grey color, general weakness that's becoming worse (though my ongoing muscle atrophy and motor skill deterioration has a lot to do with this too) and getting instantly out of breath (with rapid palpitations) when exerting myself even the slightest (like reaching my arm behind a TV to plug a cable in, or walking up some stairs). My symptoms actually remind me of my gran when she had anemia years ago. I find myself more and more often relating to the health issues of elderly people, when I'm only 28.

A cardiologist too recently found that I had a leaking heart value on an echocardiogram, which is causing a murmur. And before this, I had gone several years without any doctor putting a stethoscope near my chest, so this could have been going on much longer than I realise. Any of these doctors I've been seeing just assume any issue I report to them is just another symptom of my mysterious illness I just have to live with, and don't bother investigating anything. The cardiologist claimed that this leaking valve is nothing to worry about, but I reckon that all these heart arrhythmias (bigeminy episodes, PVCs, SVT attacks causing my heart to go at 180-200 beats a minute, heart spasms) are likely wearing my heart out and probably causes this, and will likely get worse untill I need medication or surgery.

Another worrying issue too is that my atrophied legs have noticably swollen calves with lumpy, varicose veins developing on them, and I reckon this could be related to heart issues too. All my muscles (what's left of them anyway) are very weak and no doubt my heart is too, especially with all the strain it's under with those SVT attacks.

As much as I've been saying this over and over for nearly 6 years to no avail, I guess I'll say it again, I really do hope I finally get some answers. Going by the fact I seem to be deficient in several nutrients despite taking plenty of them, it does seem like I have some malabsoption issues. I actually follow much of Dr Myhill's recommendations on diet and have been taking many of her suppliments too but again, it feels like I'm just doing it all for nothing.

 

[YippeeKi YOW !!]

@SeanQHX1
You really have a shite-load of problems, and I deeply understand the frustration with Drs who really dont seen to give a crepe and dismiss everything as a " ...because of that other thing ..." problem, leaving you with no answers and a profound feeling of hopelessnss.

Going by the fact I seem to be deficient in several nutrients despite taking plenty of them, it does seem like I have some malabsoption issues

Have you done any genetic testing? It can often be helpful in opening channels of investigation, assuming there are any Drs in or near Glasgow who'd be willing to take the results seriously, or even know quite what to do with them.

I actually follow much of Dr Myhill's recommendations on diet and have been taking many of her suppliments too but again, it feels like I'm just doing it all for nothing.

I'm not a huge fan of Myhill (please send any hate mail to Box 1157, Deer-Scat Trail, Colorado, USA), whose supplements seem pretty overpriced. Have you considered doing a little research into other options for those?

What kind of iron are you taking? I got zero-to-negative results from ferritin forms, but did get good results from the gentler, more easily absorbed, bisglycinate form, taken along with about 250 mgs of vitamin C. There's other adjustments that might be helpful as well, tho nothing's a sure thing with this soul-sucking little limpet mine of an illness.

Don't despair. Things can change. Keep posting, keep reading threads, keep poking around, This is a great place for answers ...

 

[SeanQHX1]

@SeanQHX1
You really have a shite-load of problems, and I deeply understand the frustration with Drs who really dont seen to give a crepe and dismiss everything as a " ...because of that other thing ..." problem, leaving you with no answers and a profound feeling of hopelessnss.

Have you done any genetic testing? It can often be helpful in opening channels of investigation, assuming there are any Drs in or near Glasgow who'd be willing to take the results seriously, or even know quite what to do with them.

I'm not a huge fan of Myhill (please send any hate mail to Box 1157, Deer-Scat Trail, Colorado, USA), whose supplements seem pretty overpriced. Have you considered doing a little research into other options for those?

What kind of iron are you taking? I got zero-to-negative results from ferritin forms, but did get good results from the gentler, more easily absorbed, bisglycinate form, taken along with about 250 mgs of vitamin C. There's other adjustments that might be helpful as well, tho nothing's a sure thing with this soul-sucking little limpet mine of an illness.

Don't despair. Things can change. Keep posting, keep reading threads, keep poking around, This is a great place for answers ...

Thanks @YippeeKi YOW !! . More problems just seem to keep piling up with this illness the longer it goes on. What started off with some lingering brain fog after an virus/infection has now turned into this. I know I need to get to the bottom of these issues as I know myself it will only lead to more serious, life threatening problems, possibly heart failure and dementia for me if they are not addressed.

I've not done any genetic testing yet and I've had several others suggesting I try this. I'm not sure what doctors in my area would be willing to run genetic testing, but I'm willing to travel if I had to.

I have to agree that Dr Myhill's suppliments sold on her own website are quite overpriced (especially buying them individually instead of the packages) and I don't buy them from there when I can get cheaper alternatives. Vitamin C especially is super cheap, easy to buy in bulk and you pay double for it on her website compaired to other places.

I've been taking ferric ammonium chloride and previously ferrus furmarate for Iron, but perhaps taking the 'gentle' iron would be better.

And thanks again. After nearly 6 years of nothing moving the needle with my symptoms at all and things only getting worse, not to mention with my life situation at home, still not being able to support myself at 28, and constant financial worries all the time, it's really hard to remain hopeful that things will change. All these bad doctors I've been seeing too aren't making the situation any better either. But I'm not ready to give up yet and will keep looking for answers.

 

[YippeeKi YOW !!]

Am pretty beat, so here's the short version ...

I know I need to get to the bottom of these issues as I know myself it will only lead to more serious, life threatening problems, possibly heart failure and dementia for me if they are not addressed.

Everything you seem to be dealing with, at least based on your posts, is reversible. Honest.

I've been taking ferric ammonium chloride and previously ferrus furmarate for Iron, but perhaps taking the 'gentle' iron would be better.

These are really odd iron supps. Do you have kidney problems?

Ferric ammonium chloride is, I think, a phosphate binder used for the control of serum phosphorus levels in patients with chronic kidney disease or who are on dialysis. It's an odd form of iron, and one I'm not all that familiar with. I think there may be better forms, and ones that are absorbed more easily with less stress on your system. Did the Dr explain why he was prescribing that form?

Ferrous fumarate is an iron salt of fumaric acid with a kind of spotty iron absorption level. It's usually used as a food additive, often for children low in iron. Again, I'm not sure why this relatively limited form of iron was prescribed ...

I'm really beat and need a time out, but I'll check back .... keep your chin up and know that there are answers, and a lot of members here that are way more science-y thank I am. I'm hoping they'll chime in here ...

 

[YippeeKi YOW !!]

All these bad doctors I've been seeing too aren't making the situation any better either

Its heartbreaking that living in Glasgow, seat of one of the oldest universities in the world, or at least the English speaking part of it, you're getting what sounds ike really shoddy care.

If it's any consolation, and I'm pretty sure it's not, it seems to be the same everywhere, including here in th US, where getting any lind of diagnosis or treatment for ME is .... challenging..... virtually impossible.

I'm not sure at what point medicine ceased to be even marginally about healing and became BigBusiness, hand in hand with it's evil twin, BigPharma, but I suspect the change started in the 80's, when Prozac, heavily pumped as the miracle cure for whatever ails 'ya by every print and other media source available, burst on the scene and Drs colndn't keep up with the demand for what was touted as the ultimate feel-good drug.

But I'm not ready to give up yet and will keep looking for answers.

There ARE answers. The sad part is that you'll probably make better time finding them yourself than relying on Drs for nything other than labs and patient-directed prescriptions. And most labs you can get yourself, at least over here, thru independent labs like Quest and 1000 others. It's bcoming big business, too, but at least one that has a chance of serving the patient's needs, if only accidentally and out of greed.

There's a real art to cajoling a Dr into prescribing an endless string of personal experimental prescrptions, but others seem to have managed it and might share some tricks with you. Maybe open a thread posing that exact question: How Do You Get A Doctor To Cooperate With Requests for Specific Meds?

You're on the right track, and you're doing all the right things.

If you're not getting any benefit from your curent form of iron, you might want to try the iron bisglycinate, sometimes called 'gentle iron'. I use a Solgar product, Gentle Iron Bisglycinate, 25 mg, because they're an honorable company and I trust them, but Consumer Labs gave high marks to Nature’s Bounty Gentle Iron and Nature's Bounty is a good company too.

Just dont give in, dont give out, dont give up. Like the guy said, "The answer's out there ..."

 

[SeanQHX1]

Its heartbreaking that living in Glasgow, seat of one of the oldest universities in the world, or at least the English speaking part of it, you're getting what sounds ike really shoddy care.

If it's any consolation, and I'm pretty sure it's not, it seems to be the same everywhere, including here in th US, where getting any lind of diagnosis or treatment for ME is .... challenging..... virtually impossible.

I'm not sure at what point medicine ceased to be even marginally about healing and became BigBusiness, hand in hand with it's evil twin, BigPharma, but I suspect the change started in the 80's, when Prozac, heavily pumped as the miracle cure for whatever ails 'ya by every print and other media source available, burst on the scene and Drs colndn't keep up with the demand for what was touted as the ultimate feel-good drug.

There ARE answers. The sad part is that you'll probably make better time finding them yourself than relying on Drs for nything other than labs and patient-directed prescriptions. And most labs you can get yourself, at least over here, thru independent labs like Quest and 1000 others. It's bcoming big business, too, but at least one that has a chance of serving the patient's needs, if only accidentally and out of greed.

There's a real art to cajoling a Dr into prescribing an endless string of personal experimental prescrptions, but others seem to have managed it and might share some tricks with you. Maybe open a thread posing that exact question: How Do You Get A Doctor To Cooperate With Requests for Specific Meds?

You're on the right track, and you're doing all the right things.

If you're not getting any benefit from your curent form of iron, you might want to try the iron bisglycinate, sometimes called 'gentle iron'. I use a Solgar product, Gentle Iron Bisglycinate, 25 mg, because they're an honorable company and I trust them, but Consumer Labs gave high marks to Nature’s Bounty Gentle Iron and Nature's Bounty is a good company too.

Just dont give in, dont give out, dont give up. Like the guy said, "The answer's out there ..."

Regardless of what doctors I see in the UK (aside from naturopaths and other alternative doctors of course), all your mainstream ones seem to just blindly follow orders from the NHS's system out of fear of getting their medical licences revoked I think, and just treat blood tests instead of patients. I know Dr Myhill, who was a GP at the time, lost her licence mostly for prescribing B12 injections to an ME patient, but she got her licence back thankfully. Then a neurologist I seen specialising in ME/CFS (the one who helped record the first ME death in the UK) done nothing other than offer me CBT and antidepressants (Sertraline too, a dangerous one).

Seeing these doctors was just a complete waste time, took years too long to find problems because they didn't even bother doing basic examinations, just dismissed all my symptoms because the usual blood work was normal and I have gotten so much more out of doing my own research and self-paying with labs over the years. I have no issues at all with my thyroid thankfully (often a culprit with brain inflammation as severe as mine), active B12 seems to be fine and everything else I've checked looks optimal I'd say, except for iron and vitamin D so far.

I'll definitelly try taking the bisglycinate than the other pills I've been taking, especially since malabsorption is likely quite an issue with me too. Solgar is a great name in suppliments and I buy many of these myself, my local health store always has plenty of them in stock.

I know there are answers for this and will most likely find them with the right tests. Despite this seemingly hopeless situation, I'm not giving up.

 

[YippeeKi YOW !!]

I know there are answers for this and will most likely find them with the right tests.

You can also narrow the parameters with judicial trialing of various things that you come across i these threads. It really helps eliminate some things, highlight some others. It's what most of us here are doing, with varying degrees of success ...

Despite this seemingly hopeless situation, I'm not giving up.

Excellent !!!

EDIT FOR SPELLNG AND TYPO .... S.....