Chronic Fatigue, Hypothyroid, Adrenal Fatigue, Folic Acid

[socknitster]

Ok, I've been posting stuff to other threads about my current struggle, and it was recommended that I consolidate in one place. So, next I will cut and paste a few things from my other posts in order to bring anyone who hasn't read my ramblings up to speed. I will try not to hijack any more threads, OK?

Here we go. The first thread I hijacked was about adrenal fatigue. viewtopic/t38605/Adrenal-Fatigue.html but I'll cut together some of my posts if you don't want to read the whole thread over there.

I'm resurrecting this thread because I've been on bipap for 2.5 years and a
only getting worse and worse. I have been diagnosed by an alternative m.d. with adrenal fatigue, but my research shows I actually have symptoms of Addisons including high white count and hyper pigmentation in my armpits and knees. I called my regular internist to have testing done. The vitamins and herbs the alt doc recommended have actually helped some, but I am still fairly sick most of the time. Anyone have any thoughts on this?

Well, you know, I have been proactive from the beginning. I keep pushing and pushing my regular doc to figure out what the hell is wrong with me and he can't seem to find anything. I saw an endocrinologist last April and she couldn't find anything. My list of symptoms is long, vague and sometimes bordering on bizarre. I am beginning to feel like my doc might think I am a hypochondriac, though I KNOW I am not. There is something wrong with me. I'm sure of it.

But no one seems to find anything until this new alternative medicine doc who IS a medical doctor who practices alt med to compliment traditional meds. When he said adrenal fatigue, I started researching it, and realized that I have every symptom of this fringe diagnosis and my symptoms go even further, to some of the symptoms of Addisons. As soon as I realized this, I called my internist and made an appt. I go for a metabolic panel and salivary cortisol tomorrow morning. And I guess I'll make another appointment with a diff endocrinologist (there are only two in town, hope this one is better.)

I've been sick for a several years. I had some releif when I started cpap in June 2007, but then I got pregnant that fall. Since the baby's birth I have been progressively getting sicker and sicker and he is 19 months old now. It really got bad after I got the flu in October of last year. I have been severely debilitated since then.

Here is my list of symptoms. Maybe someone will be able to tell me what the hell is wrong with me.

(I'm 37 years old, female)
OSA
Waking up is extremely difficult--feel drugged or drunk with sleep in the am. Takes a half hour to become alert
Multiple food allergies since 1998
Depression/Low Energy/Lethargy/Fatigue
Muscle Weakness
Joint Pain/Muscle Stiffness after rest
Extreme Irritibility--not unlike 24/7 PMS
Menstrual Irregularity/Fertility Problems/multiple miscarriages
acid reflux
slow gradual weight gain
hirsutism
acne
sweating with the slightest activity, rarely cold, always warmer than everyone else
dizziness if standing too fast or take stairs too fast
increased white cell count (leukemia has been eliminated)
purple pigment comes and goes on knees and armpits
I sometimes look like I have a tan, even though I don't tan
salt cravings
sugar cravings
excessive thirst
hair is coarse and extremely dry
eczema and seborrheic dermatitis are flaring up/dry skin in general
zero sex drive
swollen tongue
night sweats
April blood tests showed my SHBG is low as is my testosterone
cholesterol is high: 192 (LDL=140, HDL=40, triglycerides=62)
insulin was 8.4 which is borderline high
all other blood results (many, many tests) were in normal range at that time

edited to add: (I feel the worste between 3 and 5 pm and feel better after 6 pm, have difficulty winding down and mentally resist going to bed every night.
exaggerated startle reflex
when I go too long between meals I feel like I could kill someone if I don't get somethign to eat
sudden rage or angry outbursts are sadly a daily event for me (and if you know me, you know that is NOT my regular MO)
foggy thinking/mentally sluggish
emotionally oversensitive--I feel slighted all the time)


My thyroid has been tested about 4 times in the last 6 months, including for Hashimotos and always comes back normal

I think I have PCOS and either adrenal fatigue or Addison's. It makes sense that the adrenals would be tired, considering my history of severe osa--being hypoxic all night every night up until June 2007 can't have been good for me. Pregnancy followed by nursing and then the flu may have been too much for me in my weakened state. I don't regret having the child--he is the joy of my life along with my older son. But now, I just want to get better so I can enjoy being a mom and not feel like I'm dragging myself through every single day.

I know adrenal fatigue is a fringe diagnosis. But it wasn't that long ago that PCOS was too, as well as Guillone-Barre, Chronic Fatigue, even Fibromyalgia. I predict, from what I have read, that adrenal fatigue will mainstream in the next 10 to 15 years. I just don't want to suffer until then. I would never consider suicide as an option, but I do UNDERSTAND people who do. I feel that bad. I desperately want to get better. I am marshalling all my energy that I can spare into figuring this out.

[echo]

thanks jen. i hadn't seen your post on adrenal fatigue before, so thanks. i've wondered about that quite a bit for me too. currently the hypothyroid meds seem to be doing the trick but still not 100%. BTW I didn't realize you were on Bipap?

[socknitster]

There is much, much more in that thread, along with a lot of chatting about related things and some really helpful comments by a lot of kind people.

Then I hijacked another thread about GERD and sleep apnea here:

viewtopic.php?f=1&t=37024&st=0&sk=t&sd=a

Here is a direct link in this same thread to where I start talking about what I think GERD is caused by according to my research:

viewtopic.php?f=1&t=37024&st=0&sk=t&sd= ... 60#p479409

Then I go off on a few tangents about hypothyroidism and folic acid. I'll copy and paste some of that here.

I was recently diagnosed with Chronic Fatigue Syndrome. I got the flu last October and it took me six months and a lot of personal research to recover. The most helpful source of information I found was the book From Fatigued to Fantastic by Dr. Jacob Teitelbaum which I would recommend to anyone with ongoing fatigue and chronic illness. I have wondered about you several times while I was reading the book because I remembered some of the symptoms you have mentioned over the years and how they may fit into this category. I would seriously recommend looking into it. Also, a lot of the book information is freely available at Dr. T's website at http://www.endfatigue.com where he also has created a free online diagnostic questionaire to help people get started and to take to their doctors.

I also discovered that I may have a genetic polymorphism that doesn't allow me to utilize much of the folates in food--which is why I always got so much sicker after pregnancy and breastfeeding which require massive amounts of folates. It is called MTHFR--that is the name of the defective gene/enzyme needed to use folates. When I started a special, more-bio-available version of folic acid (called 5-MTHF or L-methylfolate) I got tons of energy and stamina back within 4 days after about 6 months of suffering. I discovered this on my own and combined with the recommended supplements in Dr. T's book I am back to the point where I was before I got the flu. I'm not settling for that level of health and well-being anymore, though and am going for optimal health. I continue to do research into chronic fatigue/hypothryroidism/folate metabolism. I also think I may have a mild case of narcolepsy. So, I'm busy going round and round with the docs. And my two children keep me incredibly busy too which is why I haven't spent much time here in the last two years.

[Muse-Inc]

Copied your list...will comment later, too foggy headed right now to make sense. First impression is low thyroid...so what were your results...my doc thinks mine is effectively controlled but I still have symptoms & keep telling him I don't feel good/fully functional until my TSH is close to 1 (about 3 now). Other impression is vit D deficiency. Will let this percolate and come back to post.

[socknitster]

Echo,

Yes. My initial prescription was for 16/12 bipap. I couldn't do straight cpap because it caused me to have central apnea. After I had a tonsilectomy shortly after my diagnosis (my tonsils were so big they touched during allergy season--the doctors felt it would help with my treatment) I was able to lower my pressure using the autobipap feature, but the bipap was bought and paid for. I have no idea if I could tolerate regular cpap now with a lower pressure. The a-flex is a lot like bipap from what I have read here. If and when I have to get a new machine (and if I don't need bipap) I'll have to demand a machine with aflex!

[echo]

Thanks for the posts and extensive info Jen!! I too will have to let this info percolate. I'll be travelling soon so probably won't post any replies to this until I get back. I hope this info is useful for you Muse!!

[socknitster]

Hey, Muse,

I suspect thyroid as well, now that some of the other crazy symptoms have started to subside. For most of my bloodwork over the last 6 months, all they thyroid tests were normal. TSH, free T4 and free T3. But the T4 was always just barely at the normal cutoff. My last thyroid test, the free T4 was flagged by the lab as below normal, but neither the endocrinologist nor my regular internist seem to think this warrants any meds. The endo never returned my call inquiring about this and my internist dismissed it.

I did do a trial of slow release T3 thyroid hormone through my MD who specializes in alternative medicine. This didn't do anything for me. I noticed a very tiny increase in energy with the very first dose, the very first day, but nothing really after that. I titrated up to 90 mcg and then back down to zero without feeling any real change.

In reading a book Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal: A Revolutionary Breakthrough In Understanding Hashimoto's Disease and Hypothyroidism by Datis Kharrazian, some of my other research is starting to make cross connections. The low folate/folate malabsorption that I discuss in the thread about GERD causes problems with the methylation cycle of metabolism which in turn can cause you to have relatively normal thyroid blood tests, but a disfunction of the thyroid hormone itself--causing hypothyroid symptoms despite normal blood tests. This is all very new science in the field of hypothyroidism. Also, my previous research into estrogen dominance, in the books by the late Dr. John Lee links into that because excess estrogen can cause problems with thyroid hormone function. I'm now starting to come to some conclusions and finding connections based on all the research I've done in all these areas.

Here is what I'm sure of: my suffering has been caused by something endocrine in nature, at least in part.

Most likely suspect is PCOS, causing estrogen dominance and thyroid involvement. The link between thyroid and PCOS is well documented.

This is what I think: I think that there is definitely a nutritional component--specifically a deficiency in MTHFR, a genetic polymorphism that does not allow you to use folates efficiently.

Here is a direct link to my post in the GERD thread about the research I have done about folic acid/MTHFR polymorphism:

viewtopic.php?f=1&t=37024&st=0&sk=t&sd= ... 60#p481278

And another link to some extensive information on what folates do in the body:

viewtopic.php?f=1&t=37024&st=0&sk=t&sd= ... 75#p481282

Ok, gotta go now!

[echo]

Also, my previous research into estrogen dominance, in the books by the late Dr. John Lee links into that because excess estrogen can cause problems with thyroid hormone function. I'm now starting to come to some conclusions and finding connections based on all the research I've done in all these areas.

Oh quick question here, is PCOS also related to excess estrogen? Maybe you already mentioned that?
I think I had estrogen tested a few months ago, have to check back in my records again, as well as testosterone, since i have very dark facial hair. (previous) Doctor thought I might have a testosterone problem. Values all came back "normal". I always thought I had PCOS symptoms but never pursued it. My aunt and her daughter (on my mother's side) both have wicked endocrine problems.
So my other question, what about birth control pills then? I just started taking them again, after 10 years of avoiding them due to, let's say, mental distress, when on them previously.

[socknitster]

Muse,

My hydroxy 25 D was in the normal range, but my "alternative" MD says he would like to see it much higher. So, over the winter I supplemented D quite heavily, but now I just make sure to get outside every day. I'll need to get my D level tested again soon. I did notice feeling an overall better sense of well-being after the weather warmed and I was able to get outside.

The real improvement I felt was when I started a trial of the more bio-available folic acid called 5-MTHF (referenced in links above). Within 4 days I started feeling much better--I mean MUCH better. If you look at the link regarding importance of folates, most of my symptoms are there--glossitis (swollen tongue), muscle pain/weakness, mood, fatigue, irritibility. And these are obviously the most troublesome problems as well! Since I started the 5-MTHF, my mothering skills have improved 10-fold. I have more patience and less temper. I just hope with time that as all the deficiencies become well-saturated with folates that most of this stuff will reverse itself. I'm very hopeful. (I'm an eternal optimist!)

I have seen real gains in my fatigue, stamina, mood, irritibility since then. But still have muscle pain/cramping/weakness, joint pain and difficulty waking up in the morning/winding down at night. The difference in my DEMEANOR alone shocked both my hematologist and my internist. Both are supporting me in going to see a medical geneticist to look for the MTHFR gene defect.

Disclaimer: if you are a newbie, I'm not trying to peddle any kind of treatment or solution for you. Take anything that I or anyone else here says with a grain of salt. We are talking about our experiences, our thoughts and our research into different topics that we feel may be helpful. You should do your own research and talk to your own doctor about what might work for you. I'm not a doctor and I don't play one on tv. I'm just a gal who has been sick, officially diagnosed with "chronic fatigue syndrome." And since my doctors aren't looking any further, I guess I'm going to have to take my degree in biology and push myself to learn as much as I need to learn to figure out what the heck is wrong with me. Since I can't accept being sick for the rest of my life (which will be shorter if I can't figure this out), it feels like it is up to me. I'm sure many of you feel the same way. Maybe you are having troulble adjusting to cpap, maybe you have adjusted to cpap and you are still feeling tired. We are all just looking for answers. And talking about the search for them.

[socknitster]

Also, my previous research into estrogen dominance, in the books by the late Dr. John Lee links into that because excess estrogen can cause problems with thyroid hormone function. I'm now starting to come to some conclusions and finding connections based on all the research I've done in all these areas.

Oh quick question here, is PCOS also related to excess estrogen? Maybe you already mentioned that?
I think I had estrogen tested a few months ago, have to check back in my records again, as well as testosterone, since i have very dark facial hair. (previous) Doctor thought I might have a testosterone problem. Values all came back "normal". I always thought I had PCOS symptoms but never pursued it. My aunt and her daughter (on my mother's side) both have wicked endocrine problems.
So my other question, what about birth control pills then? I just started taking them again, after 10 years of avoiding them due to, let's say, mental distress, when on them previously.

Yes, PCOS is related to estrogen dominance. The first day of your menstrual period is the first day of your cycle. Starting then and up to the time you ovulate mid-cycle, you are supposed to by estrogen dominant. After ovulation, you are supposed to have one, maybe 2, follicles that mature and produce progesterone in very large quantities. So, the second half of your cycle, or follicular phase, you are supposed to be progesterone dominant. Many of us, though, rarely make that much because instead of one or two follicles maturing, lots of little eggs form cysts that never mature--poly cystic ovary. They do not produce progesterone. So, you remain estrogen dominant 24/7. Not good. Dr. John Lee theorized this was due to pesticides and other "junk" in the environment that are xenoestrogens--things that mimic estrogen enough to throw off the endocrine system. Soy is widely known as being a phytoestrogen, for example, and is being put in processed foods left and right. Add that to the fact that it is very allergenic and I think it is a very bad thing, indeed. JMHO.

Regarding your "normal" values--well that is controversial. It depends on your age and the time of the month of the testing. That all has to be very carefully considered. Something docs rarely do, IMHO.

I too have excess hair. My endo wanted me to take spironolactone (decreases androgens) and bcp's. Well, my husband had a vasectomy so that I would never have to take bcp's again--like you they added to my mental distress. According to the book I mentioned above (Why do I still. . .), taking bcp's could actually CAUSE they hypothryroid symptoms because of the estrogens they contain. I decided to not take that doctor's advice and to keep pursuing more natural channels. Personally I think BCP's are great if they work for someone, but for some women, they are not the right fit. I think they are overprescribed for too many reasons. Often to cover up symptoms. I would rather address the UNDERLYING CAUSE of something than cover it up with a pseudo-hormone that a big drug company makes at a huge profit. JMHO. Your mileage will vary!

[socknitster]

Oh, wait,

I also forgot to mention that anther prevailing (and more conventional) theory about what causes PCOS is insulin resistance. This would be caused by the modern refined diet. If we eat more like the cavemen did, lol, we wouldn't have this problem. Some people go so far as to not eat any fruits or grains to try to keep their insulin under control. These people are working very, very hard to try to prevent type II diabetes. Myself, I try to do everything in moderation. I do eat whole grains in small amounts and I do like a few pieces of fruit everyday.

I can't remember the exact mechanism, but hi insulin in the blood seems to affect the ovaries. Of course, most of the time, you see insulin resistance listed as a comorbidity rather than a cause or symptom. Regardless, it is associated and should be avoided!

Just another example of how modern lifestyles are doing us harm. Damn, but poptarts used to taste so good (a long time ago when i used to eat them!)

jen

[cflame1]

another place to find out some info about PCOS...
http://www.soulcysters.net/

[kteague]

Jen, I hate to hear that you've been feeling so bad. Pursuing an obscure or elusive diagnosis is not for the faint of heart. Problem is, almost everyone with such a problem is faint of heart, mind and body just from feeling so daggone bad. I've always been impressed with the extent to which you research topics related to your health, and wonder what in the world I could add to what you already know. So, in general, I can only suggest that you "work" the relationship with this new endocrinologist. By "work" I mean to present yourself as one who is counting on them being astute and a doctor who thrives on finding answers outside the realm of routine. Who of us doesn't like to feel needed, and not want to be seen as unable to meet expectations? A knowledgeable patient can be received poorly by some docs, partly because they know up front this patient will require more discussion time. May help to start with saying something like, "I've learned a lot in trying to understand what's going on with me, but what I've learned has not led me to any conclusions. That's why I'm here and counting on your expertise..." If they do reach a point of no answer and are ready to give up, ask them who they consult when they are stumped. Even the best of docs has a go-to person they bounce things off of.

Sure hope things begin to fall into place for you. How is your sleep quantity and quality these days?

Kathy

[socknitster]

Kathy that is very, very good advice. Right now I am sooooo tired of doctors. Their go-to answers for me always seem to be antidepressants and birth control pill. It has been my story my whole adult life. I have made some real headway in the last couple of months and am feeling much much better.

I was really tired when I posted last night so I'll give a quick overview of what I've been going thru.

Childhood--always the last to finish a race, huffing and puffing and muscles aching, despite being skinny and active. I was always with or even behind the heavy kids.

Teens--started having trouble falling asleep at bedtime, but often was crashing when I came home from school.

Young adult--Active and thin but gaining weight steadily despite an ever improving diet and plenty of exercise. My interest in nutrition was growing in these years. We used to go hiking regularly. Sleep problems continued. Was diagnosed with generalized anxiety disorder.

Late 20's--Chronic sinus infections and irritible bowel that eventually proved to be multiple food allergies and inhaled allergies. I practiced avoidance and that cleared up. Was diagnosed with depression. Also had a miscarriage.

early 30's--birth of my first child. After his birth, my depression became much worse. I fought for a year to try to overcome it. When he was one year old I gave up nursing him and took the antidepressants. Sleep at this stage was a nightmare. I suffered another miscarriage.

age 35--diagnosed with sleep apnea. I felt I had found my holy grail. Within 3 months I felt so much better I decided that must have been what was wrong with me all along. I embraced my bipap with fervent love and preceeded to get pregnant. Then all hell broke loose.

My mood went nuts. I discovered omega-3's which made me feel much better. As the pregnancy went on I stayed fairly healthy but after he was born I was very sick again. Mentally and physically. I eventually decided to take antidepressants again, one that was scientifically proven to not go through mother's milk. It helped me get by. When the baby was 16 months old, last October, I got the flu. And . . . never recovered. After two weeks went by, I tried to be patient. By the time the baby was 18 months old I had to stop nursing him. I just couldn't do it any more. I was too weak. After 4 weeks and 6 weeks went by I started seeing my doctor. No answers. Then I started seeing many other doctors as well. All indicators of inflammation were up. My crp was so high the lab flagged me as high risk for a cardiac event. My white count was consistantly flagged as high over and over again.

I had many weird symptoms, listed above.

So, since the docs weren't much help I felt it was up to me and I read many books. The most helpful was by Dr. Jacob Teitelbaum From Fatigued to Fantastic. After I had read it a few times I decided to check out his website to see if there was any more information. I found a link on his site to a new study "Glutathione Depletion – Methylation Cycle Block: A Hypothesis for the Pathogenesis of Chronic Fatigue Syndrome" By Richard A Van Konynenburg, Ph.D. (Independent Researcher and Consultant). For more info click on this link to Dr. T's website and click on the stuff about Glutathion:

http://www.endfatigue.com/book_notes/Ff ... lutathione

So, I was reading this with curiosity. When the stuff about folic acid jumped out at me. I had a brother born anencephalic (severe form of neural tube defect) and both myself, one of my kids and one of my sisters kids have a "sacral dimple" which is a benign form of a neural tube defect. So, any time I read anything about folic acid, I was automatically interested. This paper said that some people have a genetc polymorphism (defect) in the gene that synthesizes an enzyme (called MTHFR) that allows the body to use folic acid. Huh. Now I was really interested. The solution to the problem appeared to be easier than anything I could comprehend--take the form of folic acid that is already made ready to use by the body. It is called 5-MTHF (5-methyltetrahydrofolate). This is really new and cutting edge science here.

I decided to try it, based on the simplified protocol that Van Konynenburg recommended. I take new supplements very spaced out. The first supplement I tried was folinic acid, the same version of folic acid that they give to those who take methotrexate to "rescue" them from the fact that methotrexate does something to folic acid--in prescription form it is called leukovoran and it is another biologically active folic acid, ready for the body to use. Felt no different. Next I added SAMe as per protocol. That was the first time I felt any supplement or medication DO anything to make me feel better. My mood improved a little and I felt a little bit peppier. Then I started the 5-MTHF. The first 4 days I felt worse. Flu-like symptoms. Muscle aches and pains worse and disgusting smelling urine like Van K mentioned would probably happen. Then on the 5th day I woke up and it was like the clouds had parted. There was more pep in my step. I had more patience and wasn't as irritable. I felt SSSSSOOOOOOOO much better, I couldn't believe it.

Over the next weeks I quickly regained my pre-swine-flu energy and stamina. My mood was much improved. There was something to this. As I did more research I found information the drug-treatment resistant depression as well as schizophrenia is now being treated with 5-MTHF because folic acid is a chemical compound that the body uses as the raw material to make neurotransmitters. No folic acid, not as many neurotransmitters, therefore brain not working so good.

I am not symptom free yet. I still have muscle and joint pain. And my muscles very quickly fatigue. My leg muscles used to tremble and cramp just from the effort of going up a flight of stairs and I would have to lie down--now I can go up and down the stairs several times and feel a little pain and cramping, but I can still do it. I can walk my son to school again and I'm not a prisoner in my home anymore. I can see friends and go shopping and be more active with my toddler. So, it is getting better. I've even been doing some gardening--with a lot of help from my husband--but it is such a relief to be able to do things I love again. I still have many hypothryroid symptoms too, but I am hopeful they will improve with time too.

So, to sum up, here is a list of the supplements that I have actually had some results with. Your mileage will vary.

SAMe
5-MTHF
Ginkgo biloba
L-theanine or Suntheanine

I have tried many other supplements for my issues, but these have actually given me results that I can actually feel. I'm about to run out of SAMe on purpose to see if I still need it. It is a chemical your body is supposed to make on its own--so I'm hopeful I won't need it anymore. The cheapest place I found it is Source Naturals brand on amazon.com.

Oh, and I'm going to be tested for this defective gene. My internist and hematologist were both convinced by the literature that I brought them and my story as well as the radical change in my demeaner that they are supporting me in finding a medical geneticist to test me for this gene. If I have it, the next step is to test my kids.

Thanks for reading my saga!

Jen

[Patrick A]

Interesting read.