Discussions By Condition: I cannot get a diagnosis.

Hormones? I feel like I should be in a hospital. Please help.

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: patti103
  • September 21, 2008
  • 05:01 PM

I'm 33 yr old female. I remember having a heart palpitation when I was a child around 8 yrs old. I remember having some of the other symptoms as well, such as mild anxiety sometimes, my face would stay flushed for a long time after P.E. class. As the years went on the symptoms got worse. For the last six years my symptoms have been getting worse. For the past 2 weeks, my fatigue has been so bad I am beginning to think something else is so very wrong. My health is quickly deteriorating. I am not experiencing any new symptoms, but the symptoms I have had for the last 6 years are becoming severe. I had a thyroid T4 =1.19 Tsh=0.53 T3=.94. I am on synthroid 50mcg because my doc said let’s just do it. Tested for hashimoto’s- don’t have it, had an MRI 4 years ago- was clean, had ACTH stim test- no adrenal insufficiency, my blood labs come back fine, cholesterol is almost high, calcium and phosphorous are almost high. Three pregnancies had gestational diabetes tests and failed the short, had to take the long test and those came back fine. 13 other people in my family have similar symptoms only 2 being diagnosed, they both have thyroid disease. Could it be my pituitary, hypothalamus or parathyroid glands (high calcium)? Please help, I am retaining water today, my eyes hurt, my joints are achy, I have anxiety, my chest is tight. I can't seem to force myself to get anything done lately. I feel like I should be in a hospital, but I know just like the slew of Doctors I have already seen, they will just tell me there's nothing wrong with me because my blood tests are normal- so why waste my time? I live in Illinois just south west of Chicago. I need an expert- I need someone to save my life. Please help if you can.


My symptoms

Goiter
Heart palpitations
Low temp
Low blood pressure
Pressure behind eyes
Dry skin, hair, nails
Thickening and darkening of skin
Buzzing in ear
Neck/ shoulder tension
Water retention
Don’t sweat
Lack of concentration
No sex drive
Anxiety
Feeling hot
Shaky
Sensitive to bright days – snow is really bad
Eye pressure and dark holes in peripheral vision
Panic attacks
Numb fingers, arms and hands
Clench teeth when sleeping
Tired/ sleepy – drink caffeine to make it through the day
Pressure in head when I lay down, can hear it in ears
Pain in ankles
Water retention/ bloated
Light headed and see spots when I stand too fast
Insomnia
Brittle nails
Dry hair
Thinning hair at the front
Hair grows very slow
When I work out my face stays red for an hour after I cool off
Don’t sweat
Crave cheese tyrosine?
Allergies
(during pregnancy – freezing)
Dry skin
Dry cuticles
See things out of the corner of my eyes
Bloated belly in evening
Shoulder tension
Headaches in back of head from shoulder tension
No sex drive - none
Dark spots on knees & elbows
Eyebrows – none on the outsides
Poor concentration
nausea
diarrhea
High cholesterol
Skin tags
Dark thick skin on knees and elbows
Inability to dilate during labor
Adult acne
Premature graying
Leg and arm weakness and pain
Hyperpigmentation around mouth

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10 Replies:

  • The goiter indicates that your thyroid is not working properly, so the thyroid meds were given, even though your blood work is ok. You may need to adjust the dosage up to 75 mg of something and maybe a different thyroid like levoxyl...the thyroid meds are tricky and generic don't always do the job like the brand name, so your doc would need to write that into the rx, if it is happening to you.I hope you are seeing an endocrinologist for all of this; I imagine you are with the goiter. Have you had that aspirated? There could be additional glandular weaknesses and hormones out of balance, so I would advise seeing an endronologist or a preventative doctor who monitors hormones.
    Monsterlove 2,921 Replies
    • September 21, 2008
    • 10:54 PM
    • 0
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  • I wasnt going to post to you but then thought someone else probably bound to suggest the illness of what im about to say cause you are presenting so similar in many ways.. but i want you to also have it pointed out to you why i think this maybe wouldnt be the case. I doubt if this is your issue (or your only real issue) ............. many of your symptoms sound like chronic fatigue syndrome and a couple of them (with the others in the symptom complex really point towards this) eg the low body temp. (that often happens if one with CFS over does things) and the low BP really stand out as it maybe being CFS (86% of ones with CFS get low BP). http://wwcoco.com/cfids/bernesx.html If anyone thou goes suggesting to that you have CFS.. i myself think you may have more than this going on (thou maybe you could have that and also another issue causing symptoms too). You need to find the other issue and find out what issues are connected to that, before i'd even think it could be CFS. Why i doubt you have CFS is that you are drinking a lot of coffee (a lot of people with CFS have issues with caffiene as they are over sensitive to things and caffiene is often an issue). "Pressure in head when I lay down, can hear it in ears " CFS people dont usually tend to get worst on laying down.. if anything it laying down helps. CFS head pressure worsens when standing up (due to orthostatic intollerance issues).Thickening and darkening of the skin and hyperpigmentation.. ARE NOT normal at all CFS symptoms. in fact i havent heard of CFSers having these issues. (basically all your other symptoms do commonly appear in CFS). They sound like addisons symptoms but you said you dont have cortisol issues. So please rule out your illness as possibily being CFS if anyone suggests it (without some kind of testing to confirm that could be the case). As ALL your symptoms dont really fit the normal CFS picture . (i should know as i've had CFS for 12 yrs and know hundreds with it and the various ways it presents due to all the support groups both physical and online im in and you in no way fit the various normal CFS presentations of it). I'd hate to see you misdiagnosed with CFS by someone who isnt very very familiar with it (99% of doctors are not). 25% of people who are diagnosed with CFS, it is found out later that they were misdiagnosed... so looking at all your symoptoms and if they fit with it IS important.
    taniaaust1 2,267 Replies
    • September 22, 2008
    • 11:19 AM
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  • Darkening skin and some of your symptoms can be caused by diabetes.
    aquila 1,263 Replies
    • September 22, 2008
    • 04:54 PM
    • 0
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  • Have you tested your parathyroid? With it your vitamin D would aslo be off, so that could be a test to ask for. A low vit. D alone can cause many of your symptoms. Have it done fasting in the AM for an accurate result. Your calcium levels might actually be low, at least if you are eating abnormal amounts of cheese. The body will take calcium from the bones if the levels start to get to low and if you are eating loads of cheese at the same time this could be messing your results up. I would try to bring the cheese levels down to normal and get retested in any case. Some neuropathies such as diabetes and autoimmune neuropathies are associated with the loss of sweating. You might want to look into both if you already haven't. Another thing you certainly want to test for if you already haven't (this is an important one) is celiac disease. Celiac presents itself differently in everyone. When my aunt was diagnosed her only problem was seizures, and when my cusine was diagnosed she had about 30 symptoms and was unabe to connect it to Celiac until her sister was diagnosed and had some of the same symptomsl. Its really worth testing for, since it causes malnutrition and that can affect every part of your body. It also can be the cause of hyperpigmentation. Another (and often untested) cause of hyperpigmentation is insulin resistance. Have you put on any weight? Insulin causes weight gain. Sorry that you are going thru all this and I hope you find some answers soon... Kiera
    Anonymous 42,789 Replies
    • September 23, 2008
    • 06:31 AM
    • 0
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  • Have you tested your parathyroid? With it your vitamin D would aslo be off, so that could be a test to ask for. A low vit. D alone can cause many of your symptoms. Have it done fasting in the AM for an accurate result. Your calcium levels might actually be low, at least if you are eating abnormal amounts of cheese. The body will take calcium from the bones if the levels start to get to low and if you are eating loads of cheese at the same time this could be messing your results up. I would try to bring the cheese levels down to normal and get retested in any case. Some neuropathies such as diabetes and autoimmune neuropathies are associated with the loss of sweating. You might want to look into both if you already haven't. Another thing you certainly want to test for if you already haven't (this is an important one) is celiac disease. Celiac presents itself differently in everyone. When my aunt was diagnosed her only problem was seizures, and when my cusine was diagnosed she had about 30 symptoms and was unabe to connect it to Celiac until her sister was diagnosed and had some of the same symptomsl. Its really worth testing for, since it causes malnutrition and that can affect every part of your body. It also can be the cause of hyperpigmentation. Another (and often untested) cause of hyperpigmentation is insulin resistance. Have you put on any weight? Insulin causes weight gain. Sorry that you are going thru all this and I hope you find some answers soon... Kiera Just wondering how u get checked for insulin resistance?
    daisykf 21 Replies
    • February 8, 2009
    • 03:28 PM
    • 0
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  • Hyprothyroidism and PCOSGood Luck
    pamelasmc 82 Replies
    • February 9, 2009
    • 00:26 AM
    • 0
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  • Maybe Polycystic Ovarian Syndrome (PCOS) and/or Diabetes.
    zaristra 3 Replies
    • February 9, 2009
    • 09:09 AM
    • 0
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  • Have you looked at a different Thyroid Disease, Myalgic Encephalomyelitis, Postural Orthostatic Tachycardia Syndrome, Adrenal Tumour or Chronic Fatigue Syndrome? I hope you get well soon.
    Anonymous 42,789 Replies
    • February 6, 2011
    • 10:26 AM
    • 0
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  • Thanks, yes I thought it was thyroid too but they said its not... get my results back tomorrow about my adrenal glands. I haven't heard of Myalgic Encephalomyelitis or postural orthostatic tachycardia syndrome... do u have any info on these?Have you looked at a different Thyroid Disease, Myalgic Encephalomyelitis, Postural Orthostatic Tachycardia Syndrome, Adrenal Tumour or Chronic Fatigue Syndrome? I hope you get well soon.
    Anonymous 42,789 Replies Flag this Response
  • Thanks, yes I thought it was thyroid too but they said its not... get my results back tomorrow about my adrenal glands. I haven't heard of Myalgic Encephalomyelitis or postural orthostatic tachycardia syndrome... do u have any info on these?Not sure if you will see this, as this post is old. I'm wondering how things turned out for you and if you were tested for Lyme Disease, Lepto and Toxoplasmosis? I have almost all the same symptoms you have and I have Lyme disease and am currently being tested for Lepto and Toxo. Cats are carriers of Toxo and I have 4. I am also being tested for several co-infections from tick bites, Lyme and it's co-infections cause most of the symptoms you and I have. Extreme fatigue(for years), eye problems, headaches, chills, muscles aches and pains that don't heal, weight gain, hand numbness, aching knees or ankles, neck pain/stiffness, and shoulder pain, tendonitis of the elbow. I've had indigestion, severe constipation, motion sickness, eye vision blurriness, sinus infections, ear infections, chest colds, constant (6+months)coughing phelgm. Muscle weakness in arms and or legs, leg cramps, extreme muscle fatigue. These are the symptoms I had until being treated for Lyme Disease, most are better or completely gone. I'm being tested for other things as a precaution be a wonderful and thorough Dr. in MD.
    Anonymous 42,789 Replies Flag this Response
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