Discussions By Condition: Endocrine conditions

can't find a thyroid disorder to explain this

Posted In: Endocrine conditions 9 Replies
  • Posted By: soccerchica0720
  • July 30, 2007
  • 06:45 AM

My grandfather and my mother have thyroid disorders. I don't know which ones, but I get many health issues from my mother. I have symptoms of both hypo and hyper thyroidism. Confused.

-I either gain a lot of weight or lose a lot of weight (Right now I am the heaviest I've ever been and I don't know why)
-I have ringing in the ears (about once a week)
-I have irregular menstural cycles (started menstrating 4 years ago)
-I have phases of depression or mania which are unexplainable and uncontrollable (not seasonal changes or giant life transitions)
-my hands and sometimes feet are always really cold
-my hair is brittle and I lose a lot of it everyday
-lately I've been very hot, sweaty, and I am unable to sleep
-I have phases of being very full of energy or unable to leave my house
-my eyes are very sensitive to light
-my fingernails are always blue

Arg. My symptoms change a lot...these are basically it, and it's annoying because I feel as if something (thyroid?) is either producing too much or too little...it doesn't make sense how it could flip-flop between the two and I haven't found any answers.

I tried getting blood work done; it was abnormal. 2 weeks later they tried again; normal. So they can't catch whatever it is. I just want to know if there is anything wrong or maybe I'm supposed to be like this. Any help would be great.

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9 Replies:

  • My grandfather and my mother have thyroid disorders. I don't know which ones, but I get many health issues from my mother. I have symptoms of both hypo and hyper thyroidism. Confused.-I either gain a lot of weight or lose a lot of weight (Right now I am the heaviest I've ever been and I don't know why)-I have ringing in the ears (about once a week)-I have irregular menstural cycles (started menstrating 4 years ago)-I have phases of depression or mania which are unexplainable and uncontrollable (not seasonal changes or giant life transitions)-my hands and sometimes feet are always really cold-my hair is brittle and I lose a lot of it everyday-lately I've been very hot, sweaty, and I am unable to sleep-I have phases of being very full of energy or unable to leave my house-my eyes are very sensitive to light-my fingernails are always blueArg. My symptoms change a lot...these are basically it, and it's annoying because I feel as if something (thyroid?) is either producing too much or too little...it doesn't make sense how it could flip-flop between the two and I haven't found any answers.I tried getting blood work done; it was abnormal. 2 weeks later they tried again; normal. So they can't catch whatever it is. I just want to know if there is anything wrong or maybe I'm supposed to be like this. Any help would be great.You can have both hyper and hypo symptoms at the same time.Or they can alternate.Either one is normal.Or you can have one for a while and switch back to the other. This is especially common when your thyroid is failing.Looks like you need to find a good endocrinologist to sort out things.One thing I'm curious about. You say you have sweating which makes sleeping difficult. Do you snore or have sleep apnea? If you have either one or both you will sweat during sleep. Sleep disorders such as sleep apnea and snoring go hand in hand with thyroid disease.Fingernails being blue could be lack of oxygen which goes back to sleep apnea and snoring. Or it could be another autoimmune disease called Raynaud's Syndrome.
    Anonymous 42,789 Replies Flag this Response
  • I used to snore when I was 2...I had my adnoids (the things in the back of your throat) taken out...I do snore and have difficulty breathing at times.Thank you soo much for your help. You are the only person who has given me answers thus far =D Hopefully I can find one in my area or ask my doctor when I see them this month.
    Anonymous 42,789 Replies Flag this Response
  • I would say that your symptoms are mainly concerned with hypothyroidism. I am a 19-yr-old female, and have experienced similar symptoms (peripheral cyanosis; dry, brittle skin/hair/nails, intolerance to cold, fatigue). I was tested for hypothyroidism and the first blood test came back with extremely low thyroid hormone levels; a couple months later, I was "normal."I can't offer any advice in the way of treatment, as I have not received any, but I am seeing an endocrinologist in a few weeks, so I'll try to help after my experiences then. I would advise you to be monitored by an endocrinologist and focus on hypothyroidimsm diagnosis and management.
    kisses4alexandra 3 Replies Flag this Response
  • oh cool thanks! the more information the better. I hope things go well for you ^_^
    Anonymous 42,789 Replies Flag this Response
  • It sounds like Hashimoto's thyroiditis, an autoimmune disease which causes the thyroid to alternate between being over and underactive. The problem with this is that it can be normal for periods of time--hence the normal blood test following the abnormal one. If you can keep getting test periodically, and request a test for an antibody implicated in Hashimoto's (i forget the name) that should catch it eventually. Even if it doesn't the pattern tends towards staying hypo after some periods of fluctuation.
    Anonymous 42,789 Replies
    • January 15, 2008
    • 07:01 AM
    • 0
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  • I agree with the person that said about Hashimoto's thyroiditis, because that's what I have and for years my TSH would go back and forth from Normal to showing I was Hypo. You should push your doctor to doing the antibody test and also an ultra sound of your thyroid. Good luck and I hope you get answers soon.
    Anonymous 42,789 Replies
    • December 4, 2008
    • 03:54 PM
    • 0
    Flag this Response
  • My grandfather and my mother have thyroid disorders. I don't know which ones, but I get many health issues from my mother. I have symptoms of both hypo and hyper thyroidism. Confused. -I either gain a lot of weight or lose a lot of weight (Right now I am the heaviest I've ever been and I don't know why)-I have ringing in the ears (about once a week)-I have irregular menstural cycles (started menstrating 4 years ago)-I have phases of depression or mania which are unexplainable and uncontrollable (not seasonal changes or giant life transitions)-my hands and sometimes feet are always really cold-my hair is brittle and I lose a lot of it everyday-lately I've been very hot, sweaty, and I am unable to sleep-I have phases of being very full of energy or unable to leave my house-my eyes are very sensitive to light-my fingernails are always blue Arg. My symptoms change a lot...these are basically it, and it's annoying because I feel as if something (thyroid?) is either producing too much or too little...it doesn't make sense how it could flip-flop between the two and I haven't found any answers. I tried getting blood work done; it was abnormal. 2 weeks later they tried again; normal. So they can't catch whatever it is. I just want to know if there is anything wrong or maybe I'm supposed to be like this. Any help would be great. You have explained my symptoms also to a T. Except a few details...I have only lost weight. Normal weight for me is about 122 and over the past few months I have lost 10 lbs. I'm 5'7", so 10 is pretty noticible. This past weekend I was hospitalized and all of my blood work points to a thyroid problem. I was experiencing chest pain for several weeks and I guess I was scared, in denial, but I just dismissed it and thought maybe I was sore? Well I woke from a dead sleep and my heart was beating through my chest...The hospital ran tons of tests, and luckily, nothing is wrong with my heart...just my thyroid. One Dr. said I have a hyper thyriod and another Dr. said hypo...my symptoms are in line with hyper, but from what I have read you can have both? My internist suggested that I have an ultrasound done (which I am doing today) and then come to see her in a week or so to repeat the blood tests.I am just confused, and I want some sort of an answer...I can read and read online, but it doesnt help much b/c I dont know if I am hyper, hypo or both? It's confusing and frustrating. Anyway, just wanted to let you know you arent alone! I'll have to update once I see the Dr. again.
    LT8605 20 Replies
    • February 19, 2009
    • 08:52 PM
    • 0
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  • Yes I have Hashis too, you need TPO antibody and TGab tests :) They don't have to be overly high to cause problems either. lotsa luvDawnx
    whitbywitchuk 6 Replies
    • February 20, 2009
    • 01:29 AM
    • 0
    Flag this Response
  • You have explained my symptoms also to a T. Except a few details... One Dr. said I have a hyper thyriod and another Dr. said hypo...my symptoms are in line with hyper, but from what I have read you can have both? My internist suggested that I have an ultrasound done (which I am doing today) and then come to see her in a week or so to repeat the blood tests.I am just confused, and I want some sort of an answer...I can read and read online, but it doesnt help much b/c I dont know if I am hyper, hypo or both? It's confusing and frustrating. Anyway, just wanted to let you know you arent alone! I'll have to update once I see the Dr. again. Another person here who has had all the symptoms of hyPERthyroidism and is now apparently headed back to hyPOthyroidism, after a 4 month period of awful symptoms. Just as you described--mine were for a full month very severe, mainly the hot flashes, sweats, constant hunger and overating but losing weight, anxiety, air hunger, palpitations, metallic taste, muscle and joint aches, and diarrhea. It all started with a TSH level of 0.19, when I had been on synthroid 0.125 for about 5 years. This was just right on the heels of a month-long viral cold and flu that kept me in bed for the first 2 weeks and coughing and weak for another two weeks. It was also coincidentally just following my doctor taking me off the acyclovir (antiviral) that I had been on for more than 20 years...her feeling was that it might be partly responsible for my anemia. I have for at least 5 years had a consistently low red blood cell count, low hematocrit, low hemoglobin, and high mean corpuscular volume. I can't remember the last time my doctor did a check on my serum B12. I have all the symptoms of macrocytic anemia, except that it has been dragging on this way for 5 years, with the treatment obviously been ineffective. I was on monthly injections of cyanocobalamin B12, daily l-methylfolate, and iron. You would think after 5 years, my doctor would have been looking deeper at perhaps a bone marrow problem, or at the very least, at a B12 deficiency. I have begun treating myself with large doses of sublingual metylcobalamin and adenosylbalamin B12 and think it is already a good thing, after just one week, in that I am in a whole lot less pain than I was previously from neurological problems that stem from a compressed cervical spinal cord. The second month was more of the same with the thyroid, only not as severe (TSH was 1.04 a month after the symptoms began). Now the third and fourth month have gradually been even less severe, but I think from my latest TSH (2.45) and my shift in symptoms to borderline hypothyroidism that I am headed back down, after my thyroid has exhausted itself. I am constipated versus having diarrhea, I am gaining weight again without eating more, complete lack of energy, muscle aches of a different type than before. I am so worn out that most days, I just can't do much more than putter around the house. Grocery shopping is a major expedition now and has to be done using the electric shopping cart. It is interesting to me that the energy level was zapped when I was hyPERthyroid, just as it is now. The two states share some common symptoms, such as hair loss and body temperature regulation problems. I am convinced that I had a severe virus that invaded my thyroid and put it temporarily into overdrive. There are plenty of articles on thyroiditis which say that this is not terribly uncommon. They all agree that the end result is hyPOthyroidism. So I have the synthroid ready and will start it up again as soon as I feel my body really really really being certain that it is hypothyroid. I say when my body tells me because trying to get a doctor to retest my TSH level again in less than 8 to 12 weeks is a waste of time during those generous "you've got five minutes of my extremely short attention span and irritable mood" office visits. Meanwhile, I have been using up the Acyclovir that I was previously taking and was taken off of (which I think set me up for the viral infection). I am treating myself with 800 mg five times a day, which is the dosage for treating post-herpetic neuralgia (shingles or the pain which lingers after the shingles rash resolves). I didn't have a shingles rash, but I might have had a systemic infection by a virus that may or may not be sensitive to the acyclovir. When we are our own doctors and pharmacists, sometimes we just get downright desperate for a cure. Since I started the Acyclovir again 8 days ago, the hot flashes and other symptoms of hyperthyroidism are almost gone. Can't say whether it is due to getting the virus under control or not. That would only be known if I had a virus titer, and those are done for one virus at a time (ie, you have to have pretty exact suspicions and test for each virus one at a time). I thought it might be Lyme disease because I live in prime Lyme terrirotory and had a Lyme tick bite 18 years ago. I still think that this is a strong possibility, even though a Lyme virus titer came back negative about a year ago. I am now reading up on Lyme and see that the antibodies don't always show up in the blood, even when it is absolutely clear that a person has had the disease. My doctor suggested at the time of the negative titer that I have chronic fatigue syndrome, since I do have a positive titer for Epstein-Barr virus (mononucleosis, which I had almost 40 years ago). I'm sorry, I am just one of those people who doesn't accept the "bucket" diagnoses like chronic fatigue syndrome, fibromyalgia, metabolic syndrome, etc. At the bottom of all the vague and confusing symptoms are real causes. The medical profession is just too busy and too lazy to look for them, since most insurance companies (especially Medicare) won't reimburse for "wild card" tests and since their HMOs chastize doctors for ordering too many tests. It always comes around to money in the end, doesn't it? The testing I have had on my thyroid was a little more advanced because I have quite a lineup in my family of ancestors and living relatives who had thyroid and laryngeal cancer. So I did manage to talk my way into an ultrasound (one lobe enlarged but otherwise looked OK), then to a different doctor for calcitonin and the thyroidagglutinin cancer marker. Those were normal. A third doctor consented to ordering a nuclear scan of my thyroid to definitively rule out malignancy or a benign nodule. None of these tests say anything at all about the potential for a viral invasion. The tests for that would have been useful back when this first started, but probably would not show much now that the virus seems to be resolving. I guess I am telling this story because it is clear to me now that the thyroid gland is very susceptible to other influences in the body. No organ or body system exists in a vacuum. The process of getting better has to start with a good diagnosis, but the chances of getting that are about zip to zilch in today's health care environment, so it is up to you to figure out what went wrong and how you can cope with it.
    penathey 91 Replies Flag this Response
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