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EndocrineWeb Community Advice

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

From: Melinda33 - 7 years 28 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.

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Oh wow I can't believe there are so many of you on here with what I have! My symptoms started March 2014. I woke up one day feeling off and tired, and have felt the same ever since, except more tired now! My symptoms are extreme fatigue, headaches, lethargy, weight gain, inability to lose weight, lightheaded, sensitive to light, cold, etc. I have literally had every test under the sun done. I have had brain and spine mri, brain and sinus ct scan, an absolute crazy amount of bloodwork, eeg, emg, vng, 9th testing, acetylcholine testing, allergy testing, diet trials, stress tests, echocardiogram, sleep study, I don't even remember everything I have done in the past 2 years but it was a lot and still searching. I was diagnosed with hypothyroidism about a year ago and thought that was the solution to my problems, but felt no different on synthroid and my levels are normal now, then I was diagnosed with being prediabetic and put on metfornin, feel no different. I'm on my way to a different endocrinologist this coming Monday because I want a second opinion. I am 27 and newly married and it sucks that all I do is want to stay home, do nothing, and sleep. I want to do so many things , explore, travel,go out with my friends and family, but I am too tired and I cant stand it anymore. I am surprisingly still hopeful but I think this is my last stitch effort. It's too much money at the doctor with no change and I may just have to cope with this And try to figure out other ways to help me feel better, maybe with alternative medicine.

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I posted about a year and a half ago. I have made some progress. I found a new endocrinologist that I hear is really good and he's run every test under the sun that an endo can test for, but he doesn't talk much at all. He seems to keep focusing on my menstrual cycle and not the fatigue. I think I've gotten out of him all I can and am satisfied for the most part that I don't have a hormone issue.

As one thing leads to another, I came to asking the PCP about allergies, and specifically mold and they told me that would not have anything to do with my fatigue and other symptoms. Seeing as I met my deductible (of course it was now December), I decided to check out an allergist anyway. Had skin scratch testing done.

I've never been allergic to anything. But with food sensitivities giving me migraines etc I figured, why not allergies to something. Hay fever popped up and sounded just up my alley. Anyway, here's what I discovered:

Apparantly I'm slightly allergic to cats (of which I've had my whole life and never had a problem), some trees, but highly sensitive to birch and mulberry. Of course, I happen to live in a town designated as "Tree City USA" but the trees on my property are dogwood and oak--not sure about some of the others in the neighborhood. Mold was negative (what they tested anyway), but a huge red welt blew up for dust mites, which kind of still blows my mind.

I don't have typical allergy symptoms. I don't get splotchy or welts or other typical signs of reaction. I do have sniffles and stuff which I was told was migraine related by the neuro, but another Dr. recently said that'd be more sinus related.

So, my mom is a cleanaholic. Home was always very clean, plus they built the house and we moved in in 1993. Didn't have issues in college or my first apartment or house I rented. It all started about 8 mo after buying and moving into our home. We had a husky at our rental house (plus my cat)...bought house Apr 30, 2012...went to Jamaica in May to get married, then got another husky in June/July. After a few months they started sleeping up in our bedroom and they'd go through spells of sleeping on the bed with us. If you don't know, huskies shed like I've never seen before. My husband doesn't really clean, and I was working and going back for my master's in education. I wasn't really cleaning like I should have either. Bedding was changed as often as it should because if I didn't change it, he certainly wasn't. So, I can see how our room may have had an excessive build up of dust, dog hair, and therefore, dust mites. He isn't convinced its allergy related but I spent a week at my friends dog sitting while she went on a cruise and I felt a little better!! I hadn't removed the big area rug after the allergy testing, but I did just recently. Removed a 10x12 carpet in a 12x15 room with the bed and 2 dressers to get it out from under, but I did it, and allll by myself. Phew. I also bought a dehumidifier. I feel not too bad today actually and I hung out with my friend last night and got home around 4am, and got up at like 7:30am and have been a bit productive today. Yesterday morning I got up at 7am. Made coffee and breakfast for my husband in bed, some otehr stuff I think, went to get errands and food and then prepared a mediterranian veg salad to take to my friends, and even responded to an enotes.com question (as a teacher educator you get paid for well answered and cited answers for students).

HOWS THAT? So, not out of the woods yet, but allergies is only thing that has had positive results. NO DOCTOR even considered it. Heck they told me it was pointless. A therapist my husband started going to a handful of times told him "dust mites aren't her problem" True, it's their feces, but it's so annoying how dismissive DR can be!! It's like if the Big Book of How to be a Doctor says it, it must be so.

So, if you're still fatigued, all the tests SAY your normal, and you haven't been allergy tested, try that! If it came back negative, I don't know...maybe it'll help lead you in another direction that will bring you closer to finding a resolution!!!

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My journey has been long and hard.
I finally see the light at the end of the tunnel.
2 things that have transformed my life
# 1 parasite cleanse
#2 heavy metal poisoning
If you are reading this please look into both

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I'm thankful I found this site but not hopeful. I am at my wits end. I'm so fatigued and my head swims some days. The fatigue is so much behind my eyes. I feel like a lead weight all the time. I don't know where to turn anymore. I've had every anti depressant under the sun (seriously about 20 different ones), I take synthroid and Luvox. Now my blood pressure is going up too. Some days my heart feels like it will beat out of my chest. I want it to stop! I've had so many tests including a heart cath. In January I was diagnosed with psoriatic arthritis and started Humira, an injectable biologic. I was so hopeful once again. I've been on it the required three months and feel zero percent better. I can't take it any more

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I'm so sorry you're suffering. Given so many on this thread are experiencing similar issues, I'm wondering if there is an existing group of people on the web that discuss things that have worked for them or potential solutions (maybe on Facebook??). I'm so tired, just searching around on the Web looking for solutions to my fatigue wears me out. It'd be helpful to have one location for those of us in the same boat to share. It's obvious we are all searching for some kind of relief, even if it is a minor improvement. If anyone knows of such a group, please let me know. I think all of us feel isolated, and have so little energy, maintaining friendships for support is virtually impossible.

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Hi Melinda. I was very touched by your story. Especially knowing that your then boyfriend (and I wouldn't be surprised if others also) were not supportive to you at all. I really want to know how you're doing, as I was very saddened to hear that 3 years from your initial posting that things were not going well. I remember you mentioning sleep apnea. Has anything helped? My extreme fatigue has only been going on for 2 weeks and has been miserable, I can only imagine how all those many years must feel. Hope you are better.

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Although this is an old post I hope I can still add to it. I have many of the symptoms mentioned here and can sympathize with your frustration and despair. After many years of suffering these same symptoms I was diagnosed with Hashimotos. At last a diagnosis, except that it doesn't seem to mean anything unless your TSH levels are abnormal. So no treatment just suffer and wait and see, which is where I am at the moment.
What started all of this including developing Hashimotos? I believe it was having Lyme Disease. Ten years ago I developed terrible headaches, flu like symptoms and a host of other symptoms including two red bullseye rashes. My doctor after a year of tests, gave me a diagnosis of CFS or possibly Fibromyalgia. It was only after I changed doctors and found one who knew about Lyme Disease, (I live in New Zealand which doesn't have the tick that carries Lyme, but have travelled a lot), that I was given a three month course of Doxycyclin. Within a week my headaches had gone and over the following months I began to feel normal again. The pain went, I had energy and my mind came back. So much so that I enrolled in study and went back to work.
Now years the fatigue and other symptoms are back and I have been diagnosed with Hashimotos. So I am wondering if there is a link and wondering if some of the writers here should ask their doctors to be tested for Lyme Disease as a possible reason for their symptoms.

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I've been having this same problem ! So far everything is normal but I'm 21 married with two kids and i gained over 25 pounds in 25 days! My doctor was extremely worried...i have no energy at all! I feel tired all day memory loss has been a issue, I'm at a loss I feel so worthless at times just feeling weak. I try to eat right and workout, I'm even trying to starve myself because I'm so desperate, I have never been this big I would say I've gained 50lbs since August its now almost January:( please help

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I know this is an old post but I'm hoping I can still get some insight and maybe direction into where to look next. I'm 33 yrs old and have been suffering from fatigue for months, difficulty concentrating , weight gain and headaches. I've had my thyroid levels checked twice as well as a series of other labs. Originally my dr just talked it up to me grieving the loss of my grandmother and the normal grieving process. But I know this isn't normal, I can go to bed early and still wake up exhausted. I've also been having difficulty concentrating. I've always been able to pay attention to details and multitask but now I'm losing my keys, forgetting where I've put paperwork and leaving my car unlocked in the middle of downtown with the keys in it. Not my finest moment. I've suffered more recently from respiratory infection that took me months to get over. And more recently I was seen for pain in my armpit/side of breast. I had a mammogram/ultrasound done which diagnosed me with enlarged lymph nodes but no source as to why. Again labs all came back normal. I'm beyond frustrated and no this isn't normal atleast not for me. My headaches they state are due to stress. I think my doctors think they im crazy

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I'm in the DFW area. Are you feeling better? I have these symptoms as well.

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has your cortisol blood been checked

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Melinda, most peo are tested and it comes back normal. They say the best time to test is early in the morning and sometimes you can have low hypo or mild hyper levels that will become undetected. I had to get tested over 3 times to finally get a test showing I was hyper. I have symptoms of hypo too and have inflammation in my neck that burns & itch, hair falling out, heart palpitations, constipation, weight gain, brittle nails and hip pain. I just started on the meds and hopefully it will help. Some doctors will tell u that it is arthritis & u are OK. If you have to pay for your own test online do it. Make sure it is at night or early morning when u take it. Good luck.

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Hi is your thyroid enlarged? Do you have a lot of nodules? If you have an enlarged thyroid you may be experiencing symptoms from hypo or hyper, but they will not treat you until the tests show like they did me. Just keep getting the tests done, go to another place to do it like I did. It took me over 3 times to get a diagnosis & you have to take it in the morning or night for the best results because the time of day does matter.

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Hi Beilatan, sorry to her of ur situation. Never let a doctor or anyone make u think u have mental issues when u know u don't. Esp if ur friends & family knows how you are. Sometimes when they don't know the answer they say that. I would hv just changed doctors. Anyway, I wanted to ask u if you have been tested for alopecia? Also hypo causes hair loss & because ur test results show normal doesn't mean u don't still have it. My cousin has alopecia & hypo, she wears wigs and take her meds and is doing fine now. I'm hyper. Most people are told once they are hypo you will have to take that medicine for the rest of ur life. I would get a 2nd or 3rd opinion, don't settle until you get the correct diagnosis and treatment that u deserve, Good luck.

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I'm a 58 yr old woman. I've been in menopause for 13 years. No signs of it subsiding. I am a chronic-depressant (pretty much since childhood), anxiety, every day allergies, asthma, insomnia... the exhaustion started around 2004. I was tested for EVERYTHING. My doctor finally said CFS.
BUT, for the last 2-3 years I have become increasing lethargic, exhausted, no motivation. This year has been the worse. I have to take caffeine pills every day just so I can work, and sometimes when I take a break in my car, I will fall asleep (I've even fallen asleep at my desk). Even on the weekends, when all I want to do is stay in bed because I feel I just can't accomplish anything, I will take at least one half of a caffeine pill just so I can get into the shower. I am a dancer. I also use a Fitbit to where I have set my daily goal at 5100 steps which I usually achieve 4-5 days/wk. So I get plenty of exercise.
I am on several medications for depression/anxiety/allergies-asthma/insomnia/hormone therapy/silent reflux (that's a new one). Some would tell me that I'm just on too many meds. I have tried to wean myself off of some, but the hormone therapy is one that I couldn't NOT take. I did get off of 2 anti-depressants which left me with 3 meds to treat depression and anxiety. I am stressed out all the time. I know the anxiety meds help because I'm a little bit calmer than I used to be but I still constantly tense up.
I've taken so many different supplements to no avail. My husband gives me crap that I am so sick of.. says stuff like "I wish I could just lay around all day like you do" etc. even though he KNOWS there is something wrong (he has done a little research like 'chronic fatigue syndrome') but the worst thing to come of all of this is that I lost myself. I want to get up out of bed and feel good. Get in the shower, go shopping, meet up with my daughter, go to the gas station... I can count on one hand the number of days I've actually felt good in the last 2 years. And even though I am active, I am 30 pounds heavier than I was in my 40's (but I still look good even though I'm not quite 5'3"). I had liposuction last year for my back and abdomen. But then, 2 wks after I developed a hernia which I did not know what it was for 7 months. It was an umbilical hernia which kept me from being active 100%. I had the surgery in May and I'm not healed yet (today is 10/2/17) I could blame many things on the fatigue. Menopause, surgeries, job, life stress, especially my husband. Aside from all this s**t I suffer through, I am really healthy. Oh, I also have carpal tunnel in both wrists (2 surgeries), osteoarthritis in both knees (bone on bone, to knee scopes & many injections) and a bulged disk & bone spur between C4-C5. But I still can manage to dance 75-100%. Except with some pain (the knees).
My psychiatrist sometimes changes my meds around to see if it makes me better. I finally have the right mix of meds to be able to sleep, but I still can wake up in the middle of the night and not fall back asleep for hours.
2 years ago I went to Hawaii to visit my son and granddaughter. I could barely function. I slept most of the time sleeping and missed the enjoyment of being in paradise.
This is super long I know, but I hope someone will read this and have something new to say about my situation.

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I know this may sound funny. But I promise it is worth looking into. I have been suffering with this too a lot recently. And just found out they added more fluoride to the water system in my city. They will tell you fluoride is harmless. but it is very much a poison. causing food allergies and fatigue.. causes cancers and eczema.. all kinds of things. and it is really really bad for arthritis. So i would try buying filters for your house that clear fluoride from even the shower water. being that it is also absorbed into the skin. I have started drinking spring waters and am starting to come back to life. I hope this helps at all.

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Hello. I'm very surprised, that nobody mentioned Cushing's syndrome. It's usual with such rapid weight gain. To be sure if you have it you need to check your cortisol levels and ACTH. And a few more tests if these are positive. You can google about cushing's more yourself.

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Hey anyone ever get answers?

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I have the knife in the back too. Have you found anwsers

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I had the same thing, hemoglobin was just slightly lower so I always thought that is because of it, then I started having joint and back pains. I accidentally found out I have hepatitis c that I probably got while at the dentist or in the childhood in the hospital because I spent there most of my childhood. Test for that.

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I still haven't found any answers. My state started medical marijuana in 2017 and I finally got desperate enough to try it. I just started it in October and it has helped some. I take it at night before I go to bed and I sleep a little better and actually feel some what rested in the morning. It helps with some pain if I'm doing things around the house. I don't take it as much as the Dr has recommended but it's enough to help me for the time being. Lately my hip has been hurting me and I recently developed a itching burning scalp. I've seen so many doctors and have had about every test done. I have a cousin who has the same exact symptoms as me so I'm hoping between the 2 of us we will find some kind of answer.

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Hi everyone, we all have a very common story. Every female in my family has hashimotos, all are on thyroxin. I haven’t received the results as of yet to receive a diagnosis, even though I have ALL of the symptoms.

This post is really advice, with this autoimmune disease we are more likely to have dangerously LOW blood pressure, we are also unable to absorb appropriate levels of Vitamin D. Even if we are in the sun a lot.

I was tired all of the time, and felt dizzy, etc.... dry skin, etc etc.... all of the symptoms listed above.

One night while having a bath Ifainted and had a near drowning episode I suffered a slight brain injury due to the lack of oxygen to the brain. How I was rescued is a story in itself. If my Son had not heard me drowning I would not be here today.

Before my accident I did not know my tiredness was due to vitamin D deficiency and that my blood pressure was 60/44.

Thyroxin is not the cure for all. Get your vitamin levels tested, get a little blood pressure monitor for your wrist, if you have dizzy spells. They are inexpensive and may save your life.

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hello! i chanced upon this thread as i was researching for my mom's issues. thought that i would share something similar. appreciate any tips!!!

my mom got diagnosed with hyperthyroidism a few months ago so she was prescribed medicine to lower the thyroid levels. the medicine did work a bit BUT her symptoms persisted. she feels extreme fatigue that is very incapacitating e.g. does not want to move away from the bed, lies in bed for the whole day. she also feels increasingly anxious. a little background is that she has depression and taking antidepressants but she wasn't this anxious.

does anyone have tips on how to manage her fatigue and anxiety? i have tried reassuring her and also encourage her to go for short walks but she keeps having the same thought patterns and says that her fatigue is preventing her to do anything. if you have some insights on such fatigue, please share as well!

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This is going to be long, but it's important. The very best advice I can offer is to get another opinion. I'm 73, have had diagnosed Hashimoto's for over 20 years. A couple of years ago someone mistakenly filled my levothyroxine meds with 200 mcg instead of 25 mcg. Unaware of that, I continued taking the meds. Four months later, following a routine set of labs, my doctor's office called and ordered me to stop the levothyroxine immediately. The insinuation was that I was self-medicating and "taking too much..." We all know Levo can't be obtained without a prescription, so I was confused as to how I could be getting too much. Hashimoto's doesn't just go away, hypothyroidism doesn't just magically disappear, thyroid nodules don't evaporate.
In six months' time, I had edema so severe the skin on my legs actully split, I kept losing my balance, gained fifty pounds, lost almost half my hair. and experienced frightening episodes of weakness, breathlessness and fatigue that left me shaking. In another year I was one hundred pounds overweight, all the symptoms had worsened, and several new ones had surfaced; leg pain so severe there were days when I coudn't walk. exhaustion and difficulty breathing so bad I couldn't walk from one end of the house to the other. This was devastating because I used to walk two miles a day.and/or did four fifteen minute sessions on the cross country machine every day.
I started making the rounds trying to find an endocrinologist who'd take my concerns seriously. It wasn't easy. A lot of endos rely too much on the TSH levels, and ignore everything that falls with the range of normal. I grew to hate those words. The range of normal might not be normal for the individual patient. Lab work can come back as normal, and completely miss what's called subclinical hypothyroidism.
I finally found a doctor who listened, ordered the usual bloodwork, and answered my questions. She also suggested that I see a cardiologist as soon as I could make an appointment. I did.
The consequences of going two and a half years without treatment for Hashimoto's left me with serious health problems; congestive heart failure and severe anemia. Both are direct consequences of long term untreated hypothyroidism. I was supposed to have an angiogram but I'm to anemic for it to be done safely. I now have to go in every week for intravenous iron infusions to try to correct the anemia.
Don't be afraid to get a second opinion, or a third, or even a fourth. Educate yourself on your condition. That way if someone starts giving you the run around you'll know it Most important, don't be afraid to get up and walk out if the doctor acts as though you're ignorant or neurotic. I did that twice, once when the doctor's only response to the inexplicable weight gain was " Cut back on the carbs." The other was when a doctor said "A lot of you girls come in here looking for thyroid pills to lose weight." Girls? Good Lord, I'm in my seventies!
It's our health; sometimes we have to raise a bit of a ruckus to make people pay attention. Finally, a good doctor won't be insulted if you get a second opinion. Good luck.

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Thank you Rose M for your message of hope. The absolute frustration of having your doctor and endocrinologist ignore a multitude of symptoms because your TSH, etc remain within 'normal' parameters is driving me to despair!
Now 58, I was diagnosed as a Type 2 diabetic, when I was fit and healthy at 38. I was told to stop eating so much and exercise. It was only 12 years later when an endocrinologist did a GAD test and explained that the struggle I had had with my BGLs was because I was actually a type 1a diabetic and U was put on insulin immediately. The damage to my eyes, etc during that period of poor disabetic control is irredeemable. 6 years on and becoming so shaky and weak that I kept falling over, I was diagnosed with Graves Disease and put on PTU. My partner at the time (himself a Doctor) thought I was faking it and not doing enough exercise.
Now in 2018, without listing them all, I have all the symptoms of Hypothyroidism, but without any real change to TSH levels. The only indicator is continuing poor iron levels, even though I am post menopausal. Apparently, it is common to accumulate Autoimmune conditions once you start!
I find the hand patting provided by my very lovely Doctor well meaning, but I refuse to believe that this is all in my head.
I have now read many comments here that reflect the lack of knowledge and willingness from our health care professionals, and hope that one day, soon, we are not relegated to the mental health queue. All the best.

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I'm listening because i have been going through, actually mimicking how you feel. Test after test with no problem solved. I have anemia mild and born with Thalaseamea (incorrect spelling) which is a blood disorder and does have a small bearing on the subject, but very little I was told and not to the point that I describe. I cannot put one foot in front of the other some days, making daily work in office and home hard to deal with. not to mention relation ship. With that being said it can cause depression because I feel unworthy not being able to keep up with my peers or those that are 10 years older than me and I'm only 57. I say no to my friends so much because of the fatigue on the weekends, they dont call knowing I want go. all I want to do is rest after the work week and chores of my home. I become fried pie ...so to speak and feel my life is passing me by...and it is! i do have other health issues. My neck is fused completely due to osteoarthritis i have had a bone spurs removed off my thoracic which these surgeries have gave me a better quality of life along with osteoarthritis in both wrist that half the bones in my right hand were removed also making the pain go away and now my knees are going to hell.. LORD have mercy! and now my energy is being stolen from me. I know that sounds like a lot...but at the same time I know others who have been through much and they are not suffering with this kind of fatigue . Does it ever stop?. I just want the energy to say yes lets do it. not no Im soooooo tired. Im tired of saying it and the phone calls have stopped to tell the other side of the story and I cant blame them at all! if you find any good news please share in your find in hopes we both can share in the pot of Gold. Thanks for listening

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