POTs and Mitochondrial Disorder?

[Tasha02]

My son has experienced a range of odd symptoms since he was 7 years old including reflux, hand tremor, headaches,peripheral neuropathy and most of all fatigue. He had testing for a ? mitochondrial disorder several years ago he had raised lactate levels but only minimally, he had a nerve study with some unusual findings but nothing conclusive. Since then he has a healthy diet, physical therapy, vitamins, he loves school and loves life generally but get fatigued all the time, he also gets constant aches in his feet and is accident prone falls, drops things when he tired which is really difficult for him to cope with. He ends up missing school and fun events. He will be 13 this week.

With our son we just thougth that this is something nobody understands and he just has to live with it. However now our daughter is getting fatigue, an irregular heart beat, dizzy spells, nausea. They are wondering if she has POTS syndrome. Our son went for numerous tests and now the process is beginning with our daughter which is so frustrating.

Anyway as a parent I finally thought I would ask for some help and advice. I would like to have both of my children evaluated. I don't think its right to have two happy children who are exhausted so often. It is so sad to see one minute they are happy normal children and the next burnt out. They are happy at school, have great friends, both have hobbies of music and dance which they love - but I want them to be full of energy like other kids - I want to help in some way! It is so sad to see 2 motivated children have to live like this - you only have one childhood!

I would be happy to travel anywhere for help. We have friends who live close to the Cleveland Clinic - we just would like some help.
So hope to get a response - thank you in advance!!

[MitoJessica]

Hello. I was recently finally diagnosed with Mitochondrial Disease after almost 8 years of being sick and searching high and low for an answer. I have Dysautonomia that the MItochondrial Disease caused. POTS is a form of Dysautonomia. Your kids sound exactly like me, my symptoms started at around age 15, I'm 23 now. It's been a long road already, and will continue to be, but I am seeing a Mito specialist, and with the help of meds and supplements, I am seeing big progress. Raised levels of lactic acid are not typical. I would highly suggest you look into Mito more. You do not have to have profound differences in blood tests to indicate Mito. It is a very erratic disease. Numbers can be close to normal, but still have bad symptoms, and vice versa. I would reccommend you get into contact with someone at UMDF.org, they can locate a mito specialist for you. Mito is not that rare, 1 in 4,000 have it, but that number is thought to be much, much higher since it is often misdiagnosed. If you want, you can email me at chapman_jessica***@****

[Aimee3125]

you seem to be where I was 5 years ago before finding the right Dr. for my daughter. The university hospital in cleveland the autonomic labs are the best. If anything call and get info. it took us 3 yrs to get a diagnosis or any kind of improvement until we got into them.

[stella5349]

A thyroid test - meaning the TSH is not the tell all... Full thyroid panels including the Free T3 abd Free T4 levels - along with the ultra sound as a follow up could determine more on the thyroid end..

Reading the original post you made.. a parathyroid test would be something to see also with some labs.. The PTH - Vit D - calcium ( serum and ionized ) with phophorus also could rule this out as well.

The ACTH testing for the adrenals will not tell you anything unless she has "advanced" adrenal malfunction as in Addison's or Cushing's disease... to fine tune a more common disorder for her as well as your son.. you may want to consider getting saliva testing done on BOTH levels - thyroid and adrenal - to see if anything else comes up with this type of testing. Its hard to find doctors that take saliva testing into consideration but for many that seek answers with nothing found traditionallly - find saliva testing good.

[ThyroidHunter]

Howdy from the Hunter! Don't just assume the blood test rules out any thyroid or metabolic disorder. An ultrasound/sonogram can provide a lot more evidence. Many of us experience "normal" blood labs routinely, yet we are still very sick.

Toleration is another issue as well. The testing is not easy, but will tell you a great deal about your children's health. Contact me when you've had the sonograms, and I hope things will improve.

[Tasha02]

Hi there

Just wanted to let you know my son't thyroid test came back as normal and my daughter is having tests for adrenal function this week. Thank you again!

[Tasha02]

Thank you very much - I will!

[ThyroidHunter]

Please keep me advised how this goes if you can. I have added this to my watch list. Very best of luck and keep the chin up!
Clay

[Tasha02]

Thank you so much all idea's welcome as we are all getting quite desperate. One Doctor thought our son might have a mitochondrial disorder and we just don't know where to turn. With our daughter they think it could be POTS because at times she has an irregular pulse. They both have low blood pressure as well - its so strange and I do think that there could be a link between the 2 of them. A friend suggested we go to the Cleveland Clinic and have them both assessed but I wouldn't know where to start.


Thank you so very much for the reply. I thought perhaps nobody would and I will look into the thyroid ASAP!

[ThyroidHunter]

Hi Tasha,

I am not a doctor, but have founded the National Thyroid Foundation, and am a recognized book author on the subject of thyroid disease. I was born with congenital tumors on my gland which have developed quite substantially over the last 53 years, but I'm still fighting back and have not lost my gland.... yet. Thus the group name ThyroidHunter.
Thyroid Cancer is the most prevalent form of carcinoma in youth under 20. I am not suggesting they have thyroid cancer, but their thyroids, TSH levels, and a detailed sonogram are definitely in order... if you have not already had that done.

As a child, I experienced most all these symptoms, but am hyperthryoidic, this issue with fatigue sound much more like hypothyroidic, and it's easily tested for with a 5 test thyroid panel blood test and ultrasound.

I hope this helps in some way, or spurs some thoughts among others if this is ruled out. Best