Register Today!
Receive our eNewsletters. Signup
EndocrineWeb Community Advice

Extreme fatigue, no answers and "normal" test results.

From: Melinda33 - 7 years 3 weeks ago

I have been suffering for the past two years with extreme fatigue, rapid weight gain, with difficulty losing weight. Currently I have have been experiencing what seemed like a UTI, but found through lab tests it was not a UTI, had an Ultrasound, all normal, and they are sending me to Urology/Gynecology to see if they can figure it out. I have all the symptoms of hypothyroidism, but none of the lab tests say that is what it is. I am 33, I weigh 175 pounds. I have gained 20 pounds in the past year, and the scale doesn't budge. I have always been active, use to run daily, and now it takes extra effort to even find the energy to attempt exercising. I'm cold all the time, although at night I will occasionally have night sweats. My hair is dry, my skin is dry, I am constantly tired, constipation, lack of sex drive, eyes are sensitive to the light... the list goes on. I am beyond frustrated. I have spent so much money trying to figure out what is up, just to be asked if I need anti-depressants. I know in my heart I am not depressed and there has to be some logical reason why I feel so crappy and exhausted every day. They have tested me for all sorts of things ranging from adrenal fatigue, cancer, fibroids, thyroid testing - including T4 and other uptake tests.

I'm at a loss, it seems I have every symptom except my body seems to tell Drs I am normal when I don't feel normal. I am not depressed, and could take the prozac they tried giving me to help with Energy but I know it's just covering up whatever is going on... I'm frustrated, and upset by all of this. I'm 33 and my life is passing me by because I can't get the energy to do much of anything, go to bed early, drag all day in a mind fog and just want to sleep, and go to bed early weeknights and take naps on weekends.

Life is great other than this... I was hoping to find a functional endocrinologist in my area of NH but haven't seen any online... I am at a loss, I am grateful for any help or advice anyone has or if this sounds like something that happened to you or if you are an MD and know what this could be, please help.

Do you find this discussion helpful?
3

85 Responses

Is this good advice?
0

Hi everyone,

I somehow stumbled across this discussion and just wondered if anyone on here had been tested for tuberculosis? The symptoms of extreme fatigue, chest pain, cough, brain fog, heavy limbs are all things I experienced for years before being diagnosed. Although an x-ray should identify pulmonary TB straight away it doesn't always work that way - mine did show up immediately but the TB caused the most pain where it had spread into in the lining of the pleura. This never showed up on any scan or x-ray.

In addition to pulmonary TB the disease can hide and disguise itself in many ways and affect practically anywhere and everywhere in the body. Some symptoms can be similar to Lyme's disease too (fever, chills, fatigue, weight loss) which has already been mentioned so I definitely agree with checking for that too. I felt that the TB specific medical staff I saw, though very helpful and caring, failed to either appreciate or detail sufficiently the complications and potential long term effects of the disease. As for the GP's they were appalling and dismissed me for years before finally agreeing 'for my own peace of mind' to send me for an x-ray. Accident & emergency had also refused to x-ray me twice for potential damage to my ribs.

I totally understand how frustrating and debilitating it is to feel tired all the time, it really does make you feel like you are losing your mind, and when you already feel so low pushing doctors to take you seriously is the last thing you need. Best wishes to all and don't give up.

Is this good advice?
0

I have been beyond frustrated as well for almost all of the same symptoms! I was taking meds for hypothyroidism for about 4 months in 2013 when I was 21 but the doctor took me off the medication because they did not want me to be dependent on the medication since they continued to test me every month after I stopped and was getting normal results. I did not feel an improvement with the synthroid, and off of it I've felt worse. I've been to a rheumatologist, endocrinologist, dermatologist (for hair), and a neurologist and no one has been able to indicate what has caused my chronic fatigue. I ended up crying the last time I visited my endocrinologist because she told me that my results were normal and what I was experiencing was probably something psychological like severe depression or bipolar depression. I knew it was not psychological because I WANTED to do things! I was beyond frustrated because I could not run anymore, or dance anymore, or hang out with my friends anymore because I had NO energy! I ended up seeing a psychiatrist though after the endocrinologist suggested it and my doctor put me on lithium, which I was on for four months and made me feel incredibly worse. Once on this lithium, I really did start to feel depressed because my reactions were even slower at work and everyone I worked with was making fun of me because I was making careless mistakes and would have random fits of laughter or times where I felt so tired I had to go in the back to sit down. It was horrible but the psychiatrist encouraged me to try it at least for 3 months because some of the other bipolar meds gave me a rash after a few days. After three months I told the doctor I wanted to stop the medicine, but he wanted to keep me on it a little longer to combine with other medicines like Welbutrin, and I felt so nausous. I'm finally off that medication and I actually feel a lot better! But I still am so fatigued it's frustrating. My mom noticed me twitching in my sleep so I had a sleep study done and they told me I had mild sleep apnea (12 on the scale) but I am not able to sleep with a cpap because I feel claustrophobic when I'm wearing it and get anxiety from it. I am only 128 pounds and 5'6 and 23 years old. I saw a pulmonologist a few months ago and he believes that maybe the lithium gave me the apnea and wants to wait a few months before having another study done. I just want to have energy again and not feel like I am 70 years old. I also have been wearing wigs because I've been having male pattern baldness and the dermatologist just told me that maybe I'm losing my hair prematurely or at a young age based on genes, but my dad is the only bald one in my family lol! I almost hope that sleep apnea has been causing all of this because I have been losing contact with friends because I have to keep canceling plans because I feel so sick sometimes I can't stand up or even sit up. It feels comforting though to know I am not alone.

Is this good advice?
1

Hi, first off I totally understand your frustration. Please don't let doctors talk you into taking any more medication for depression, when as you say the problems you have are physical not mental! They tried the same with me, suggested I was depressed and had problems with food and anxiety, anything but find out what was ACTUALLY wrong with me.

Have you been tested for Addison's disease? That can potentially cause hair loss as well as extreme fatigue. I was tested for it as Tuberculosis is known for destroying the adrenal glands apparently I don't have it but I also don't have the 'surge' of energy you're supposed to have in the morning to wake you up. I guess you have already gone through the gamut of 'normal' possibilities related to extreme fatigue; anaemia, Vit B12 deficiency, ME.. and maybe even TB? I also stopped going out, stopped staying over at friends and regularly fell asleep at work during the afternoon. It became normal but believe me it isn't normal! I still suffer from extreme fatigue now but people just assume you are being lazy when you say it's really difficult to get up in the morning. They don't understand that you feel as if your body is weighing into the mattress and that the thought of having a shower is exhausting.

One thing that people in general and often doctors in particular don't understand is the long term effects of being incorrectly diagnosed for significant periods of time. You begin to doubt your own sanity and lose self confidence, because you feel weak physically it makes you believe you are weak mentally and that in turn can lead to being made to believe that you aren't actually ill, that it's all in the mind etc.
It makes me angry that this kind of thoughtless manipulation happens on such a regular basis.

Even though it's hard, keep insisting that your symptoms be taken seriously and don't be afraid to get second opinions. I had a friend who spent years feeling ill, tired and uncomfortable until she discovered she was allergic to nickel. There isn't always a simple explanation for a medical condition and symptoms certainly do not always present themselves in a text book fashion but unfortunately you will have to force the issue to get anywhere.

Hang in there & keep pushing for answers!

Is this good advice?
1

Hello, I found this site and just wanted to add something to the discussion. I also started having the same issues as most of these posts when I was in my early 40's. I had always been extremely active and had no weight issues. Out of the blue everything changed so, I went to my doctor who sent me to many other doctors for 6 months. After having every test they could come up with the best they had to offer was Chronic Fatigue Syndrome and Depression.
I finally found a naturalist who did some test and immediately told me that I had/have Adrenal Fatigue or Adrenal Burnout. She described my life for me instead of me having to tell her. She told me that it takes a long time to burn out your adrenal gland but it can be rebuilt. It can take up to 24 months if it is extreme. I was very relieved to find an answer for my problems.
It is worth your time to research Adrenal Fatigue. There are many articles on the internet and you should be able to find a doctor to test you for it.
I sure hope this helps someone. God Bless!

Is this good advice?
0

The mention of the Mirena IUD sent chills up my spine!!!
I had Paragard IUD for about 10 years and had to have an Ablation done (Genetic history), and they replaced my IUD with a Mirena, LITERALLY WITHIN 3 months I had gained 20 pounds, started having acne, TOTAL short term memory loss (Literally less than a 2 second span), not to mention difficulty getting words out in conversation or putting thoughts together.

I had the Mirena in place for only 9 months and forced them to remove it against their advice. the fatigue has only gotten worse and memory loss is still there, but the energy has returned to a more manageable level.
Taking Anti-Depressants have only compounded the symptoms and I feel like a zombie- so I don't take them after trying that route for 9 months with med change ups to try finding the right one.

IT IS MADDENING!

Is this good advice?
0

I an sorry that no one has replied to your post. I had/have Graves Disease. As far as I know it's in remission, but feel like nobody cares or wants to help me. I'm also dealing with a host of other autoimmune diseases or syndromes. If you need support, don't hesitate to contact me.

Is this good advice?
0

I'm going to give it a try. When you talk about your feet and hands aching, is it most often in the morning when you get out of bed? My feet are off and on in pain and I figured it was plantar fasciitis, but now I'm wondering if it could all be related. For the last 5 or 6 years I've been thinking my thyroid is in hypo mode (family history supports it) but of course my tests all come back normal just like so many on here have been saying. Now lately I've been experiencing some minor numbing in my left hand/forearm. My Dr is going to order a neuro consult. I'm going on 50 and feel like I'm falling apart sometimes!

Is this good advice?
1

Hello, Melinda33. I'm not sure if you're still reading this, but it sounded so similar to the issues I was (and continue) to have that I thought I would respond.

As odd as it might sound, for me, the fatigue I had been experiencing for years turned out to be a series of disparate problems diagnosed over the years at different times.

(1) Sleep apnea. That was the first thing diagnosed for me by a doctor who actually cared about what I was going through. I'm just about to hit six years on the CPAP and it's been great -- but I have to tell you, it took four years of using it literally every time I slept, even naps, before I really knew it made a difference. I know CPAPs suck (someone earlier in the thread said they couldn't make it work) but you have to really, really try to get them to work for you. It makes a huge difference. I went from not feeling like I could even drive to having much of my life back.

(2) Anemia: My mom was anemic and so am I, and it took years for me to realize that I was so anemic I needed to basically megadose on iron pills. I take four 65mg pills per day and it just barely keeps me above the danger level on blood tests. I probably need more but they upset my stomach.

(3) Chronic upper respiratory issues/allergies: This goes back to childhood in the 1970s and 1980s when (long story short) my parents and doctor failed to treat asthma along with chronic tonsillitis properly. The CPAP has kept me from developing bronchitis like I used to always get, even when I was a teenager, but the URIs have never fully gone away. Vitamin C and Zinc help a lot, as does controlling the allergies as best I can with Flonase and daily Claritin. I also do nasal rinses (NeilMed lavage, sometimes with Alkalol, and Simply Saline targeted spray), use Sinol spray and Mucinex as much as possible, and just try to control the allergies in the home.

(4) Acid reflux: When I was able to take omeprazole every day for acid reflux, I felt absolutely wonderful. The side effects were too much for me to handle so I can't take it anymore. Tagamet works okay but not as great as omeprazole. I didn't even KNOW I had acid reflux until an ENT who was trying to shrug me off told me to take it, I think just to shut me up, but it turned out to be a good idea.

(5) Hernia: I'd had some improvement with fatigue and energy about five years ago and had even lost 50 lbs when I started to feel epically tired and nauseous frequently. It got worse and worse until a couple months ago I ended up in the ER with a nasty hernia. I found out that doctors had seen it in a CT scan back in 2010 but never told me! It's going to be surgically repaired but now I realize a lot of my fatigue and other issues were this undiagnosed hernia. I can only hope surgery helps fix it. You might want to check out articles on this, one in the NYT called "In Women, Hernias May Be Hidden Agony" and one in the LA Times called "Fighting the Battle Against Misdiagnosed Hernias in Women." It's interesting stuff, and apparently more common than you would think.

(6) Probably a thyroid issue: My grandma and her sisters, my mom and her sisters, and all my half-sisters have had to have their thyroid removed. My tests come back normal but I would be shocked if I wasn't dealing with an undiagnosed thyroid issue, too.

I hope some of those things might help you or others reading this. Best of luck to everyone!

Is this good advice?
0

I think I can help you with this...I suffered with many of the problems you are having and more. I would still be if I let my Endocrinologist who is a TSH lab jockey ride me into the grave. I believe i have successfully self diagnosed and have started treating with readily available supplements. Have you had any issues with low b12 or calcium intermittently? also have you had your D3 checked. These are not the supplements I'm talking about but are symptoms of the possible issue. In my case the hypothyroid state caused a sever anxiety/ stressed state that nearly shut my digestive system down, it functions just well enough keep me getting by. The real issue is in the stomach. Now I'm going to propose a scenario that accounts for every thing you suffer from. Your hypo state has created a series of issues in your digestion that have stressed your body forcing it to slow down vital processes and therefore needs less t3/t4 to do the job..thus your labs appear normal, but only normal for the current state it is in. digestion takes up massive amounts of energy in your body and if it were optimal you would need more t3/t4. The reason you have such stress is that you possibly suffer form hypochlorhydria (low stomach acid). If you have reflux I can almost guarantee this is the case.....reflux is not an issue of too much acid it is caused mostly by too little acid so food and acid sit in your stomach longer and end up in your throat causing heart burn and other issues. Now, that undigested food enters your intestines and your body is unable to break down protiens to build aminos for other functions without the proper amount of hydrochloric acid and pepsin that your stomach would normally produce. You suffer issues in every system in your entire body from this lack of breakdown and malabsorption. Treatment is with supplemental hyrochloric acid/pepsin from a source called betaine HCL with pepsin. My energy is back to a reasonable level that I feel as though I can start exercising after four years, my night vision has returned, my memory is much better, my photosensitivity is slowly resolving, I am more articulate than I have been able to be and I am begining to drop a few pounds. Most importantly my tsh values form last draw were nearly to the point that the idiot of an Endocrinologist that calls herself a specialist will have no choice but to increase my meds on next visit sending me back to a state where I can possibly create proper amounts of stomach acid with no further need to supplement. I'm including some links that are helpful in determining if this is your problem. I chose to just take the betaine with pepsin to test myself directly, others may want to try baking soda with water in the morning..the links detail the ways to self test. It may sound scary to take hydrochloric acid, but your stomach produces this already and a simple antacid reverses any heartburn you may get if you take too many. I will help anyone who feels this might be their issue. My life has been a hell of lost opportunity and lack of progress for the last four years and I'm finally taking it back. Nobody should suffer like this at the hands of people that tout themselves as specialist in the field and then miss a simple diagnosis like this. Good Luck and contact me if you have questions. I want to add that this short summary of illness in no way covers all of the issues I have had over the course of time with thyroid disease. I also have had every test imaginable since it started to include all manners of blood work, MRI, CT, upper and lower GI endoscopy, neurological exams, etc...... the list goes on just to find out that nothing was wrong according to labs other than low b12 at one point and I had hyperparathyroidism as a result of poor calcium intake according to my doctors. Never once did any of them consider that malabsorption was the issue. I had to push my doctors to get all of this stuff done as they seemed happy just to look at my lab numbers and not listen to how I was feeling. You are not crazy and they are under skilled or worse yet just complacent. do more information search on the topic of hypochlorhydria than what I posted....you will see how your issues fit in with this diagnosis.
http://www.ndhealthfacts.org/wiki/Hypochlorhydria_%28Low_Stomach_Acid%29
http://www.amazon.com/gp/product/B00020I13Q?keywords=solar%20ray%20beataine%20hcl&qid=1445753740&ref_=sr_1_fkmr0_1&sr=8-1-fkmr0

Is this good advice?
0

Hi Caryh42,

For about the last 6 months I have been suffering severe fatigue, weight going up and down, until recently, just going up. My eating patterns have not changed, I eat healthy and try to exercise at least 3 times a week, but just keep gaining. I am at the point where the fatigue is actually painful. I do not sleep well, either I cant fall asleep or wake up several time in the night. I have gerd and suffer from migraines (I get the Botox injections about every 5 months for these and take meds for the gerd, which recently has gotten pretty bad. I am have an endoscopy in December). I am having such difficulties concentrating lately, and my head feels like I am in a cloud because I am so tired. My migraines/headaches are also starting to get worse because of the fatigue. I was planning on making an appointment this week with my family Doctor and was wondering what tests I should ask her to have? I really want to feel normal again, I feel like a fat, not thinking zombie lately and so much want to feel better again. I have also had half of my right thyroid removed about 8 years ago and like the original poster, since then all my tests always come back normal. Would greatly appreciate any suggestions you or anyone else could provide. Thank you and hope things are going well for you.

Is this good advice?
0

?

Is this good advice?
0

Please read Clark????'s reply from a while back and consider reading "WHY CAN'T I GET BETTER? Solving the Mystery of Lyme and Chronic Disease" by Richard I. Horowitz, MD. I too have been suffering from many of the same symptoms for over a decade and all of my tests come back "normal". My doctors and husband think I'm crazy, but I know my body and I feel like I've been trapped in someone else's for years! This book isn't just about Lyme disease, it's about chronic illness. Many of our symptoms are vague and can be easily overlooked or explained away by uncaring or busy doctors. This author/doctor had heard enough similar patient cases to get curious and start connecting dots. He developed a simple quiz that will help you narrow down which tests your doctors may need to focus on first. There are dozens of different types of Lyme tests, for instance, and they can carry other diseases. If nothing else, I plan to purchase a copy for every doctor that treats me poorly or incompletely (as a parting gift)! I hope we all find our answers. I feel like I will have an honorary med degree before I figure this out. Igenex Labs is the only place to trust with your Lyme testing. Test kits for heavy metals and other things can be ordered without a prescription online if your doctors won't comply. Knowledge is power!

Is this good advice?
0

I started tearing up from reading this thread of posts because you have given a voice to what I've been going through for a year. I am going to get my tests done tomorrow morning for Thyroid as my blood results are fine. Let us see if there are any answers to this nightmare.

Is this good advice?
0

I realize you made this post long ago that, and wondering how you were doing now. I would very much like to exchange Facebook/email addresses. I live in the DFW area and have not lived here long needless to say because of the fatigue and have not made a lot of contacts and it would be great to have somebody to communicate with that understands what we are going through.

Is this good advice?
0

I know the issue about iron because I have been tested with it after being diagnosed anemic. I don't take iron tablets anymore but I found out my serotonin levels made a HUGE difference. I know not everyone has this same problems and this won't work for everyone, but I consume more iron in whole foods (gluten/lactose intolerance) and get more sleep and I haven't had to have a transfusion or multivitamin in over a year. Stress affects us more than we know. I don't have a huge amount of money but I pick and choose what gets iron the most and I get it from my meat and cashews-works great for me, since I work all the time and on the go. Back to my previous post, I am awaiting my specialist's appointment, but the deficiencies and thyroid along with ms have been ruled out and my two cysts on my brain are to blame. I have gained back 100% function but my seizures are under control, I can work part-time, and I'm going to speech therapy for my memory- I won't get back what I lost, but they could be a lot worse, and I am thankful I had a small recovery. Baby steps for me. I wish the best of luck to you all and will keep checking up :)

Is this good advice?
0

Hi Everyone,

I'm so happy I stumbled on this thread during a Google search. Thank you to those who have responded about Thyroid, Lyme, etc. I want to do the same and help others - but at this point, all I have are questions.

My story: 46 yr. old female, busy active life, normal weight. In 2011 diagnosed with degenerative disc disease and had neck surgery / spinal fusion. Shortly afterward started having stomach pain, GP Dr. said it might be an ulcer due to all of the naproxin, advil, etc., I took steadily for 2 years due to the neck pain. He prescribed omeprazole which I take daily, but still have belly issues. Since neck surgery I have developed new back / neck pain, extreme fatigue, daily headaches, joint pain, muscle weakness, depression, anxiety, unrefreshing sleep, occasional panic attacks. I experience terrible pain in my upper right abdomen after almost every meal. All the doctors say GERD / heartburn. I had heartburn while pregnant and this is a much different feeling.

Over the last year, the joint pain in my knees has become debilitating. Both knees, inside and outside of the knee cap toward the side of my leg. I have also developed hip pain, worse on the left side with a pain that starts at my hip and stretches along the left side of my leg. All of these issues improve slightly with exercise. Then right around Christmas, my hands & fingers started to get stiff. I could not open jars or bottles while making dinner.

I am so tired I can barely make it through the work week. My teenagers need me to run them to practices, lessons etc. and you would think they are asking me to fly to the moon. Every task seems impossible and I have developed this weird cognitive block - like I can't think of the words I want to use and can't follow simple directions. In short, I can't keep it together! Everything seems so difficult. I have stopped enjoying social things, even going out to dinner. I just want to stay home.

All my GP wants to do is take me to pharma-land, so last fall I went to a rheumatologist thinking I might have RA. After a 10 min. exam he immediately said I have fibromyalgia, not RA or anything else. He threw the Lyrica samples at me so fast I couldn't even think of any questions! Went for a second opinion at another rheumatologist and after that exam, he said I didn't "look sick" and there were people all over the city with "serious illnesses" waiting for months to see him, and I was not one of them. Yep. He really said that. He agreed with the Fibro diagnosis but I didn't hear anything he said after that as I choked back tears. Mortified, I left feeling hopeless.

At least the first Rheumy guy took a complete blood panel which showed I have elevated liver enzymes. Interestingly, they were elevated in 2012 (one of the many trips to my GP where he took blood samples and prescribed the newest med...ugh). At the time, my GP said the liver enzymes were likely elevated due to the anti-inflamatory stuff I had been taking due to headaches and neck pain.

Fast forward to last week: Rhuematologist #1 referred me to a Gastroenterologist. Finally someone who listened and doesn't think I am an idiot! He said he isn't as concerned about the liver numbers themselves, but that they have showed a pattern (doubling since 2012). Dr. Gastro ordered an edoscopy and ultrasound this week.

I am encouraged to finally be getting somewhere but also prepared for everything this week to come back "clean" as I have heard multiple times the past five years. Thyroid normal, glucose normal, ANA normal, negative for hepatitis. The only thing slightly below normal range was my red blood cell count.

Other ancillary issues which may be related: My joints crack and pop all over my body. I have vertigo, ear pain / pressure and TMJ to the point that I have to stop talking or chewing food because my jaw hurts so bad. I am ALWAYS cold. Even in July. History of mono / Epstein Barr virus. Unfortunately I don't know any family history due to being adopted at birth.

Through all of my research I suspect Lyme's disease but everyone seems dismissive of that. I even asked my husband about it - several years ago we stayed at a B&B and I remember afterward I got this weird ringworm-like thing on my arm. At the time we thought it was from playing with the owners' cat but my husband is a germ freak and literally stayed away from me for a week until the "ringworm" went away, which is why it sticks out in my mind (because I was pissed at him, LOL!). Now I'm thinking.....could that have been a tick bite? No bull's eye rash, just a small circular red patch with a ring.

Or is my Lyme's theory just silly - maybe I have Celiac's disease and gluten is making my stomach hurt and is causing the brain fog and joint pain??? (No diarrhea or constipation.)

I am really sorry this is so long but I guess you guys are my therapy. :) Does anyone else have similar issues combined with elevated liver enzymes or low red blood count?

One other thing - to those who have been diagnosed with Fibromyalgia like me, please know I share your pain and in no way am I dismissing it as a real illness. If that is where my diagnosis stops, so be it - I just have this intuitive feeling there's more going on with me.

Thanks and big hugs to all who suffer - we can do this one day at a time!

Liz

Is this good advice?
0

I too have been battling fatigue. About 8 years ago I started complaining of fatigue and asked my Dr. to run tests which came back normal. Then a couple months later I became pregnant and and ignored the fatigue since I was a new mom. Previous to my pregnancy I was a light sleeper but after I gave birth I could sleep through anything if I knew someone else was listening for the baby. A year and a half after that I had gallbladder surgery and then was pregnant again a few months later. After deciding we didn't want anymore children (3 years after my 2nd child) I had a tubal and ablation. About 2 weeks after surgery fatigued hit me enough where I couldn't ignore it. I was going home early from work to take naps, I would fall asleep on the couch (even within 30 mins of waking) and I had no energy to do anything. I went to my Dr. and asked for tests to be done and she told me to do a sleep study. I thought that was crap so I started seeing an alternative Dr. which showed numerous things wrong with me but showing my adrenals were exhausted. Within the 1st month of taking supplements I felt so good but after the 2nd month I started going back down hill. Kind of giving up on it several months later I decided to do a sleep study which showed I snore and to consider narcolepsy. So I seen a neurologist and he ordered another sleep study and was certain I had narcolepsy however my test results came back negative and I was diagnosed with idiopathic hypersomnia. He gave me Nuvigil. The 1st week was amazing. I could cry telling people how much I was enjoying life but then the 2nd week it decreased and the 3rd week it decreased more and the 4th week even more. He upped my dose but now 3 days into a new dose I'm falling asleep and have no energy. I'm at the point where I'm afraid to sleep at night when my kids are home but no one else in the house. I could probably sleep through a bomb and would still wake up like I haven't slept. I had blood test done (all thyroids, mono, adrenal, and the normal annual bloodwork) and everything is normal except for my vitamin D. The past 3 years it's been low but it dropped from 26 to 16 in the past year. I see her next week for a follow up and going to ask for more test. When I was 12 I had lyme disease. At the time (20 years ago) the pediatrician's office didn't know much about it but had a Dr. who had just come back from a conference about it. I was treated with antibiotics and my bulls eye rash went away. I don't know much about it but wonder if it is still causing me issues? After I had lyme disease I started getting numbness in my legs with sever pain, passing out, abnormal periods, weight gain, hair loss, headaches, and migraines. I really hope I can find a Dr. willing to work with me and not shrug it off as crazy.

Is this good advice?
0

For Melinda33 go read and watch Dr. David Brownsteins information Salt and Iodine, I feel you will find some very informative answers. Really, anyone suffering with these same symptoms!

Aly

Is this good advice?
0

Hi Melinda,

Just found your post as I've experienced the same issues. Did you ever figure out what was making you ill. I'm experiencing the same symptoms. Hope to hear from you.

Thanks,
Afrodite

Is this good advice?
0

Ive been going through similar symptoms almost 8 years now im 26 now. Ive had debilitating fatigue, severe body pain also eye problems and severe mental and cognitive problems. Was treated with lyme disease with one round of antibiotics but the doc wasnt even sure i had it. Symptoms did not get better . Eventually tried A psychiatrist and sleep soecialist. He did numerous tests on me and said I had chronic fatigue and depression. Also had the eppstein barr virus as well. But still after all this I still hit A dead end with all my routes. I was referred to A specialist for lyme treatment by A experimental doctor but he did not take insurance so couldn't afford it. Just dont know what to think or believe

Is this good advice?
0

Im having the same symptoms but i feel like im loseing my mind its like everything is freaking me out now i lost my appetite i lost my out going self i used to be a out going person now all i want to do is lay in bed im haveing anxiety attacks and im depressed im haveing mind fog confused and just worried alot then normal im haveing the same symptoms of graves disease are something im going to get blood work done hopefully that will tell whats going on i thought my high blood pressure was acting up but im on medication for that but that's not making my other symptoms go away my nose freaks me out my hands freak me out driving freaks me out everything freaks me out and im scared does anyone know why im feelin like this? Please help

Is this good advice?
0

What are your symptoms ? Im having confusion appetite lost
Anxiety depression i freak out about everything now mind fog
Hard to concentrate im trying to see if we're having the same symptoms.

Is this good advice?
0

@Alex
I really feel for your reading you comment. I have been diagnosed with CFs also but have made great leaps and bounds and am almost completely better except the exercise intolerance. I found a book(and was revommended the treatment by a friend) called the Perrin Technique by Dr Perrin. He is an osteopath who has a theory about the thoracic spine and its relationship to lymph drainage and specifically the movement of cerebral spinal fluid. The pain you describe as the stabbing in the back is exactly what I had, among many other things. I bet it is situated in the thoracic part of your back, ie: just under or beside your scapular. Please read the book or seek out an osteo who is familiar with the technique or at least is a cranial osteopath. I have just started treatment(not the exact Perrin technique but close) and I am sure it is a blockage of some sort in my rhs sinus jaw area. The pain is becoming much more localised and easy to treat. I wish you luck! Don't give up or lose hope. Please don't accept a half life. Eat well- even keto if you can but at least low carb high fat and enough protein. Get your cells working properly with nutrition. Make sleep a priority. Yoga is great both physically and mentally if you can get to a point where you have enough energy. Be kind to yourself but don't accept there is nothing you can do. I really do wish you all the best!.

Is this good advice?
0

I can understand a you what exactly you are feeling right now.. I hope am not too late to replying to this post. Anyways, whatever you have described earlier, I can just say its symptoms of hypothyroidism. But the question is why doctors sending you to Urology/Gynecology rather than sending you to neurology.
My granny had the same and suffered for 4 years (now she is 56 year old)but due to proper diagnosis in time she lost her eyes. So I can say you must consult to better doctor who treat you..

Is this good advice?
0

Melinda33- did you ever find a solution?
I'm waiting on my T3/T4 tests right now. One thing I have found is that following a nutritional program has helped me immensely. Basically drenching your body with nutrient dense foods. It hasn't solved the issue completely, but has definitely helped. It was a big switch to go completely natural, but worth it. I follow a specific product line to help get my body to the alkaline state. Contact me if you are in need of some ideas, I'm happy to share!! Maybe we can overcome this together! :)

Is this good advice?
1

Hello, I just thought I would share my experience and relay some information... I have been suffering with extreme fatigue for at least 3 years now, brain fog, cognitive impairment, muscle aches & stiffness, low body temperature, intolerance for cold, all of my bodily systems just seem slowed down and my body just does not seem to be functioning like normal. When this all began happening I had the basic blood work done and was told everything is normal. I had just finished my Masters with a 4.0 so to go from that to barely being able to get out of bed from pure exhaustion was something completely different! So to make a long story short I recently discovered the Holtorf Medical group, they have locations in Atlanta, California, and Pennsylvania. They specialize in chronic fatigue syndrome, fibromyalgia, Lyme, thyroid & hormonal issues, etc and do much more thorough work than most doctors, plus they understand how all of our bodily systems relate to each other and how if one goes haywire then it can be a domino effect for the others to do so as well. They recommended a book that has been very helpful in explaining all of this, it's called From Fatigued to Fantastic! By Dr. Teitelbaum who had chronic fatigue himself during medical school and had dedicated his life to helping others recover from it as he did. Anyway I hope this info helps and I pray that we all get well and find the answers we all need! Oh 1 more thing, there is a documentary that has recently come out about chronic fatigue syndrome that is worth watching it's called The Forgotten Plague.

Is this good advice?
0

Oh my gosh!!! I have been battling some of these very symptoms myself for almost 20 yrs :'( they're just getting worse, I gave up going to the Dr.'s and manage the best I can, but now I have even more symptoms, besides the horrible fatigue, I also get heart palpitations with sweats that just come on for no reason, I can be laying in bed, or at work or in tge ahower, there's no reason, and now that I'm 40 everyone says oh its cause you're menopausal, then I tell them I've been having these since I was in my very early 20's. I've been diagnosed with "borderline" thyroid problems, I'm very over weight now :( , after having 4 children, the fatigue has gotten much worse, I am miserable, my mood is suffering from the constant feeling like crap, never getting any answers. I had been seen by a ENT who told me in 2007 it sounded like Thyroid symptoms, I had a biopsy of suspicious shadowing in my esophagus, it turned out not to be cancerous, so that was that, no further follow up but still have the lump sensation in the left side of my throat, sometimes my throat hurts soo bad it hurts to breathe, I too was diagnosed with depression, low iron levels, also my blood work showed some sort of inflammation but was never followed up with to give me answers as to why, my Dr always focused on my weight,"you need to lose weight then you'LL feel better"
Well HELLO THERE STATING THE OBVIOUS, :( If I felt better and had the energy I would exercise more. :/ I was 96 lbs begore I got pregnant with my first child, I was very active and exercised all the time, but not long after having my first child my symptoms began, they would increasingly get worse. I saw a cardiologist when I was pregnant because the heart palpitations got soo much worse, she told me it sounded like a thyroid problem. 6 yrs ago my Dr finally ordered a nuclear study test, however I can't lay flat on my back for more than a few mins because of the pressure on my throat from the lump sensation without getting sick, as the Dr's found out the hard way when I had to have both my last children delivered through c-section, I vomited both times, they tried telling me it's all in my head, I get very dizzy, light headed, super nauseous, and then vomit, it's awful. My hair thinned out, my skin is super dry & itchy all the time, my finger nails now have been splitting lengthwise for the last 3-4 yrs, I used have nice long beautiful nails when I was younger, now I can't keep them with barely any whites showing :( I have shooting pains in my fingers and feet and they are ALWAYS soo very cold and hurt, this is newer symptom for me within the last 2 yrs, my eye sight has gotten worse, my headaches increased, insomnia has also become a problem, I find myself soooo overly tired that I'm miserable and can't fall asleep, and yet other times it's taken ALL I'VE HAD to work a full day and come home and lay down and fall asleep while I'm supposed to be getting supper for my kids & get them situated for the night. I'm miserable, this isn't the life I want to live, I want to be able to have energy to play with my kids, but on the weekends I'm soo exhausted I don't want to do ANYTHING :'(
3 yrs ago they wanted to run that same nuclear study for my thyroid but once again I can't be laying on my back for 45 mins while I'm being shaken on a table, I also have motion sickness :/ why can't they do that darn test while I'm standing or sitting?
I'm going to be going back to the doctor and asking for a referral to an endocrinologist soon. The last time I went to Dr's 3 yrs ago, I was found to also be borderline diabetic :( so I figured I at least need to a dress that problem too, esp with my symptoms getting worse lately.

Is this good advice?
0

Maybe check calcium levels. High calcium, see hyper parathyroid disease

Is this good advice?
0

Please research hyper parathyroid disease. You have a lot of the symptoms.

Is this good advice?
0

Also numerous causes for all of these symptoms. Sometimes we think it is just the thyroid and miss other compounding causes. Besides what others have mentioned; heavy metal overload: mitochondrial disfuntion: excess or inability to excrete iron: folate absorption difficulty: parasites:hyper parathyroid disease to name a few others
I am an energy healer who has experienced issues with my thyroid as well as other issues. Have done a lot of personal work and doing pretty well. You may want to work w an energy healer or medical intuitive. I had mitochondrial disfuntion w my low thyroid. I'm on Carnitine and NTF factor. I always use the methyl cobalamin form of b-12. Helps w energy for me. Oh, I used to be an RN and owned a health food store as well. Energy healing is awesome, btw. Experienced more health benefits from this than pretty much anything else

Don't Miss Out! Get the FREE EndocrineWeb eNewsletter!

Sign up to receive treatment and research updates, news, and helpful tips on managing your condition.
SUBSCRIBE
close X
SHOW MAIN MENU
SHOW SUB MENU