I don't know if this is a Mitochondrial issue or not?

Hi Everyone,

Well, I think I may have figured this out. As soon as I increased the Estradiol Patch from 0.025 to 0.0375, the hot flashes during the day, stopped. I was still having problems with night sweats, tossing, turning, soreness/stiffness in my lower back, pelvis, knees, calves, hands and feet. These symptoms make it impossible to sleep. The vessels constrict during hot flashes, which means I'm not getting enough oxygen on a cellular level.

I saw my Endocrinologist on Tuesday. I explained everything to her. She said that the ordering physician should increase my patch to. 5 Mg. I'm also taking 100mg. Of Profesterone, on a 14 day on/off cycle. In fact, I stop the Progesterone on Sunday, for 14 days.

I phoned the ordering physician and asked for a scrip for the. 5 Mg dose, to be called in to my pharmacy. They were supposed to fill it yesterday, at closing time. Only, the secretary said my doctor bolted at 5 and didn't stop by the desk to call in my scrip. So, today I phoned again, and was told it would be called in at closing time. Of course, it wasn't, because I would have gotten an automated call from my pharmacy. I want it before Monday, because my application days are Monday's and Thursdays. I just hope its called in, tomorrow morning, before the doctor sees her first patient. Hopefully, the secretary will call and let me know when its been done. More importantly, I'm hoping that this new dose will help with the issues that occur at night.

Ill keep you guys posted, once ive started the new dose, hopefully Monday. It should take about a week before I notice any improvements.

I hope all of you are well.

Hi Jake's Mom,

Thank you for replying. That's ok that I posted a while ago. I suspect that people who post on this site, are all having one sort of medical issue or another. We all come to the site for help.

I wanted you to know that I called the doctor who prescribes the Estradiol patch, for me. She called in the next highest dose, which is. O5. I picked it up. I will start it, tomorrow, since Monday's and Thursdays are my patch application days. It could take a week before I notice any difference. I really hope I notice a lessening of my symptoms. Im still not sleeping. I toss, turn and have stiffness in my lower back, calves, hands and feet. I checked, again, on-line, and it seems that all of these symptoms can be caused by an estrogen deficiency. I'm still having night sweats, too. During the day, is the only time I don't have the hot flashes. Its as though the current dose just isn't enough. I really hope the .05 dose will do the trick.

My Endocrinologist ordered an AM cortisol and an adrenocortical test. I just checked the patient portal and my AM cortisol is 12.7, which is fine. The results for the other test have not come in, yet. I'll let you know when it does. I don't have an appetite, either. That, too, can be because of the estrogen deficiency. I have to force the food down, which isn't a pleasant experience. I don't know anyone else who's having these issues and its frustrating. Even my mom has occasional hot flashes (she had a hysterectomy in 1995), but doesn't experience the other symptoms. I don't know if my pituitary isn't stimulating the adrenal glands to produce cortisol and alderosterone. I really hope this isn't the problem. Although, I don't have nausea, dizziness or other symptoms of Secondary Adrenal Insufficiency (SAI). I mainly have loss of appetite, stiffness in the areas stated above and night sweats. I will check the portal again, to see if the other result is listed. Apparently, there's a delay from the time its posted to the portal, to when it is actually there for the patients to view. They want the ordering physicians to see the results, first.

I'm so sorry to hear about all the pain youre in and that your son is ill. Its very difficult to sort these things out, when its just ourselves, let alone a child. I want you to know that I'm here for you, whenever you want to talk. I wish I could erase your pain. I do feel powerless at times. I'm trying to hang in there and stay positive. I need to find the solution, because it will help many. I, too, have a son. He's 19. He worries about me, a lot. He's away at college, now. I miss him terribly. We try to Skype once a week, but Friday was the first time in 5 weeks, that we Skyped! He's very busy. He's a Biochemistry/Molecular Biology major. He wants to become a Neurologist.

Please try to stay positive and remember that all of us who are in the same boat, are cheering for you! We need to stick together.

Take care.
Swing Out Sister

High, Sister. Thanks for the update, and thanks for the support. It means a lot.

I had a hysterectomy with removal of everything on August 26th of this year. Endometriosis had taken over my lower abdomen. I've had a couple of hot flashes, but nothing horrible. I'm not on any hormone replacement at this time. I chose to take the wait and see approach.

Thanks for keeping us posted on you. Wishing you the best.

Hi Everyone,

Well, I finally know what's wrong with me. It only took 3 years to figure out! I have Sacroiliitis. That's what's keeping me tossing and turning all night long and getting very little sleep. I began PT on Thursday and had the second session yesterday. My scrip reads 2x a week for 6 weeks. I'm still in pain but I'm wondering if it will take more than 6 weeks of therapy, before I'm sleeping again. The PT said its my sacrum that's the problem. Its moving around too much (hypermobility) and is unstable. Those SI joints are supposed to be taut with a 1-3 degrees amount of movement. I wear a Serola Belt day and night, to hold the sacrum in place. I do isometric exercises at PT and at home, to get relief from pain. Although, doing the exercises is painful. I have to keep going and work through the pain, before I will see improvement with my sleep. I hope sleep comes soon, because 3 years is a long time to be sleep deprived. I'll let you guys know how I'm progressing with the PT. So far, it hasn't been much help.

Take care everyone.

Hi Stacey,

Thanks for getting back to me. That's funny, because we both have a short right leg. I saw the PT on Wednesday and she said I'm down to 1 cm off, instead of 3. So, I guess the exercises, massage, heat and ice treatments, are helping. The problem is, I'm still not sleeping. I'm still tossing and turning and my calves and feet are still sore and stiff. I have no appetite and I still have the tingling in the hands and feet, with twitching of the toes on the left foot, only. I think once my back issues improve, my sleep will return. Once that happens, the loss of appetite, tingling and twitching will stop. This is my body's way of letting me know that there's a problem. Believe me, I hear it loud and clear! I'm trying to fix it, but have been on the wrong track until recently. Ive only had 3 PT visits and I do the exercises at home, 2 to 3 times a day. I'm trying to speed things along, because I'm hoping to be better in 5 weeks. My son is having his wisdom teeth removed on 12/22. My last PT appointment is a few days before that.

Also, I'm scheduled for an endoscooy on 11/25. I hope I don't have to follow the gluten free diet. Both of my blood works came back with the IgG in the "Indeterminate" range. That's weird. Normal is 0-19 and my score was 23.5. The range is 20-25, for "Indeterminate". I followed a gluten free diet for 11 months and it was torture. It was stressful on my family, because it was very difficult to find places that were trustworthy. By the time September rolled around, I was so sick of Paneras. Imagine trying to follow a diet when you have no appetite? It was awful. I think my appetite will improve as soon as my sleep returns. That wont happen until my back has healed. Its a mess! My mom thinks it will take longer than 5 weeks to fix this. The PT said if that's the case, she can request another scrip from my doctor, since hes right across the hall. The practice owns the PT place.

If you ask about checking your SI Joints, make sure your doctor lists that on the scrip he gives you, for an MRI. The problem is, the SI Joints don't seem to be reported on, unless they are specified on the scrip. I would have had this figured out 3 years ago, if they had listed it on my MRI scrip. The last thing they report on, is the L5/S1, and that isn't helpful when the problem is lower down. I wear a Serola belt, during the day, but it makes matters worse at night. The pressure from the belt digs into my pelvic bones, when I'm trying to sleep. As it is, I toss and turn, that only makes matters worse.

I agree that Arthritis is chronic. I'm wondering if I have in my calf bones and feet bones. I have stiffness in both all day and night. Or, is the stiffness caused by my weight not being distributed properly, due to the pelvic obliquity. The only way I will know is either with xrays or if these symptoms go away, when the pelvic obliquity is corrected. I think its the latter. We will see....

Let me know how it went with the new Neurologist. I know what it feels like not to be taken seriously. I had to describe my symptoms to the neurologists PA, because the doctor was on maternity leave. When the PA came out to call me, she called me Nicole. That didn't fill me with confidence. I actually showed her my left foot and the twitching toes. She said she saw it, but my exam was normal. I have to wear the carpal tunnel gloves to bed, so that my hands don't go numb in the night. Once these symptoms go away, I can stop wearing the gloves. Its a bit of a mess right now.

Yes, I was told that I have anxiety or Fibromyalgia. I know its not Fibromyalgia. If I'm anxiety stricken, its because I haven't been able to get answers until recently. That, as you know, is very frustrating.

Never feel like you cant say how you feel. I understand and will always listen. Hows your son?