Mitochondrial Dysfunction

[cujet]

I've had trouble with cyclical and ever increasing extreme fatigue, exhaustion and exercise intolerance for 10 years now. I've have Hashimoto's for 25 years, and RNP antibodies (MCTD) and was always an athlete. But treatment did not help the ever worsening prob and I'm now quite sedentary (not by choice) .

I first noticed that I could not bicycle 30 miles anymore, and chalked it up to "bad days" or getting older. But when distances reduced to 6 miles, then 3 miles followed by unreal exhaustion that can't be explained, and inability to get heart rate up above idle, it was pretty obvious something was very wrong. I'd go 4MPH and be flat out incapable of doing more. That's a universe away from 20 something racing speeds and 30+ mph sprints that were possible before this started. 

I am also very low T. Testosterone treatment makes no difference what so ever with regard to this. Makes me horny, but does nothing for the severe energy deficit.

I've just been accurately diagnosed with Multiple Mitochondrial Dysfunction (although it's been suspected for years) . It's not necessarily genetic, possibly caused by Statins. It's not good news, it's rare, but it's good to finally know. Knowing means I now understand that I must not push myself into fatigue, as I've been told damage occurs due to oxidative stress. Staying within my energy envelope is the directive.

One thing I learned on my own is that Prednisone helps, especially when I have extended troubles. Interestingly, certain Mito diseases may be responsive to glucocorticoids.

Quote from NCBI: Mitochondrial dysfunction can be precipitated by drugs, Hypothyroidism, renal and liver impairment and diabetes are other risk factors. Whilst evidence in the literature points towards statin-induced mitochondrial dysfunction as the most likely cause of SAMS, the exact processes leading to mitochondrial dysfunction are not yet fully understood.

I should never have been put on statins. Being both Athletic and Hypothyroid. It's ruined my life.


In any case, I'm wondering if anyone here knows anything about this kind of disease?

[DazedandConfused]

As a fellow male with hashimotos since 15, I would love to talk to you over the phone.

We share many similar issues. I recently had to move down from Colorado to Iowa due to
Chronic mountain sickness.

[cujet]

As a fellow male with hashimotos since 15, I would love to talk to you over the phone.

We share many similar issues. I recently had to move down from Colorado to Iowa due to
Chronic mountain sickness.

PM sent

[Flyingfool]

Cujet.

Can you help explain the statin relationship with this dysfunction?

I was athletic swimming regularly before cancer behind left knee and subsequent surgury, radiation etc and healing issues resulting in 2 surgeries for infection and now a third infection which is being treated with antibiotics.

However with wound healing issues and open wound and covid closing the pool. I habe been able to do little exercise or even PT on my leg. So I have gained weight.

I have had high lipids and have resisted my dr who wants me on statins. Because I was low risk with exercise etc. but now with this extended sedentary time and my lipids still. Ot good I am wondering if i should consider a statin.

I am not smoker and wasn’t overweight by only a couple pounds. My weight has increased. I also started having Erection quality issues even before the whole cancer and all my body has gone through after. Scared my ED issues were restricted blood from high cholesterol/triglycerides. Maybe it was my body trying to fight the can sr or simply age. My T levels are borderline. I have started taking 2.5mg tadalafil everyday Nd has seemed to have very little help. But it did seem to raise my T levels both total and freeT. But I felt no different and erection quality was not noticeably all that improved.

I do take 50 mcg of T4 thyroid.

So like you I am slightly hypothyroid and marginal low T and lipids are high and womder if statin makes sense.

But I do NOT want to end up with microcondrial dysfunction if that combo is a “perfect storm” setting up the house of cards to fall.

[ghce]

I Might have to look further in this ailment, my symptoms and outcomes have been similar to you both.

My big wake up call was with swimming, I used to swim 3KM every or every other day that very quickly reduced when I was in my early 30's down to being absolutely exhausted at just one length of the pool plus a load of other tiredness and lack of stamina symptoms.

After a lot of testing was diagnosed with Gilbert's Syndrome but due to its commonness in the general population I have never been completely at ease with that diagnosis and times have moved on since then there may well be another underlying cause which could explain the severity of my symptoms when it comes to exercise.

The low T thing never occurred until my early 50's so pretty sure its not related at all.

[cujet]

Cujet.

Can you help explain the statin relationship with this dysfunction?

So like you I am slightly hypothyroid and marginal low T

Here is a link from an Astronaut doctor, there is quite a bit more on his website. https://spacedoc.com/articles/statins-and-mitochondrial-mutations

Note: I'm not just slightly hypothyroid, my thyroid is 100% non functional. Also, T levels of 25 ng/dl means I really do need T replacement.

One thing is for sure, I'm not getting better.

https://spacedoc.com/articles/statins-and-mitochondrial-mutations

[golfboy307]

cujet,

Not the best news, but at least you know for sure.  I know you have been trying to figure things out for several years.  Hope you can find some relief...

[sifter]

I've had trouble with cyclical and ever increasing extreme fatigue, exhaustion and exercise intolerance for 10 years now. I've have Hashimoto's for 25 years, and RNP antibodies (MCTD) and was always an athlete. But treatment did not help the ever worsening prob and I'm now quite sedentary (not by choice) .

I first noticed that I could not bicycle 30 miles anymore, and chalked it up to "bad days" or getting older. But when distances reduced to 6 miles, then 3 miles followed by unreal exhaustion that can't be explained, and inability to get heart rate up above idle, it was pretty obvious something was very wrong. I'd go 4MPH and be flat out incapable of doing more. That's a universe away from 20 something racing speeds and 30+ mph sprints that were possible before this started. 

I am also very low T. Testosterone treatment makes no difference what so ever with regard to this. Makes me horny, but does nothing for the severe energy deficit.

I've just been accurately diagnosed with Multiple Mitochondrial Dysfunction (although it's been suspected for years) . It's not necessarily genetic, possibly caused by Statins. It's not good news, it's rare, but it's good to finally know. Knowing means I now understand that I must not push myself into fatigue, as I've been told damage occurs due to oxidative stress. Staying within my energy envelope is the directive.

One thing I learned on my own is that Prednisone helps, especially when I have extended troubles. Interestingly, certain Mito diseases may be responsive to glucocorticoids.

Quote from NCBI: Mitochondrial dysfunction can be precipitated by drugs, Hypothyroidism, renal and liver impairment and diabetes are other risk factors. Whilst evidence in the literature points towards statin-induced mitochondrial dysfunction as the most likely cause of SAMS, the exact processes leading to mitochondrial dysfunction are not yet fully understood.

I should never have been put on statins. Being both Athletic and Hypothyroid. It's ruined my life.


In any case, I'm wondering if anyone here knows anything about this kind of disease?

Hi cujet-
Have you had the occasion to take any Fluoroquinolone antibiotics in the past few years?
There is a side effect for this class of antibiotics which is known to damage mitochrondria.

It includes commonly prescribed Levaquin and Cipro.

You know it is bad when there is a BLACK BOX warning which the FDA required for these antibiotics.
It is bad enough so that there are class action lawsuits.
The mitochrondria damage can often result in a torn achilles and peripheral neuropathy. 
Unfortunately a lot of practitioners are not familiar.  (however the pharmacists are WELL aware...)

The FDA reinforced the warning recently since a lot of docs were giving it out like candy- basically "don't be giving these out for UTI's and such"- the side effects are real-
I am a senior athlete and had a lot of the symptoms you did-
google it-

[cujet]

Hi cujet-
Have you had the occasion to take any Fluoroquinolone antibiotics in the past few years?

No on the antibiotics. I did take Doxy for ehrlichiosis (a bacterial tick born disease that SUCKS) a few years ago, but by then I was already having trouble.

Looking back, I'm very sure the damage was caused by statins. The muscle problems started within 3 weeks of my first statin use, and while changing types did seem to help some of the symptoms, that's when the decline started.

The very first thing I noticed was that muscles did not feel powerful during a bicycle ride. My arms grabbing the bars felt weak, instead of being pumped up and tight.

On a bit of a good note, my doc has a cocktail of supplements that are good for mito, including some neurotransmitters. There is no question that it helps and while I'm not physically capable, I'm at least able to function on something just above a sedentary level. Any real physical activity still wipes me out, but if I keep it slow, I'm at least functional.

[StephCurryFtw]

@Cujet,

I’m curious, if I may ask, how did you find out about your mitochondrial dysfunction diagnosis?  I’m talking like did you have tests done or how did you find out for sure besides the obvious extreme fatigue symptoms you had while biking?  Did you have to see a certain specialist or who diagnosed you with the mitochondrial diagnosis? 

[cujet]

@Cujet,

I’m curious, if I may ask, how did you find out about your mitochondrial dysfunction diagnosis?  I’m talking like did you have tests done or how did you find out for sure besides the obvious extreme fatigue symptoms you had while biking?  Did you have to see a certain specialist or who diagnosed you with the mitochondrial diagnosis? 

I sure thought I answered this question. In any case, it was a series of detailed and genetic tests. Including organic acids and neurotransmitters. The results are pretty clear. The treatment is pretty much a minor help. It seemed to help for a bit, but it's no longer helping as much and it irritates my digestive system.

In fact, I find that the only thing that helps is Prednisone and taking far more natural thyroid than the labs would suggest. That's really no surprise because both "crank up" the mitochondria. Also I have multiple mitochondrial dysfunctions. It seems at least one type is positively affected by prednisone.

[not_James_Bond]

Have you any experience with Methylene Blue???

https://pubmed.ncbi.nlm.nih.gov/9257711/

https://raypeatforum.com/community/threads/oxidal-liquid-redox-modulator.6618/#post-79865

If you are interested in it I have the same username over at Raypeatforum.com

[not_James_Bond]

Here is an interesting article; http://raypeat.com/articles/articles/mitochondria-mortality.shtml

fully saturated phosphatidylcholine (PC)
Saturated PC is believed to change the composition of CL back to saturated, as it is found in humans at birth, and thus restore optimal oxidative metabolism inside the mitochondria of every cell.
https://raypeatforum.com/community/threads/mitolipin-liquid-saturated-phosphatidylcholine-pc-mix.10398/#post-136078

I have no affiliation to Ray Peat, just a keen member