Discussions By Condition: I cannot get a diagnosis.

chronic cold hands, fatigue

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: ReneeS14
  • January 17, 2008
  • 00:06 AM

As a whole, I've been suffering from chronic problems that seem to have gotten worse recently. I feel extremely fatigued all the time and have noticed a severe problem with my energy level. My mind feels foggy and I have a hard time with memory and concentration. I'm only 18, so I know age is not the issue. I seem to be more affected by the cold than others. I also notice a bluish/purplish discoloration of my legs and arms sometimes.

My hands are always ice cold. They've been this way for over a year. I never thought too much of it, although people have often told me there had to be something wrong with me. However, recently I've noticed the area underneath my nailbeds is red and inflamed, and appears somewhat shiny. On a few fingers a small sore has developed in the area. I've also had some problems with small sections of skin on my hands becoming extremely dry and itchy. (But I'm not sure if this last problem is due to an illness or simply the winter dryness).

I've had similar problems in the past and my doctor has suggested thyroid dysfunction, but the tests always come back fine. CBCs are always fine too.
I feel like I'm crazy for thinking I'm sick. However, I know there's a problem and it's severely affecting my life. Does anyone have any suggestions to what it might be? What tests should I ask for?

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10 Replies:

  • When they "checked your thyroid", did they check the thyroid antibodies as well? I had symptoms that were eerily reminescent of thyroid symptoms for years, but my TSH was always happy as a ***m, as were my other thyroid hormone levels. So I was told my thyroid was "okay"I also had a strange neuro type illness that produced a profound fatigue and other symptoms...Eventually (after 8 years), I was found by my 8th neurologist to have a rare complication of autoimmune thyroiditis called Hashimoto's Encephalopathy (HE). My thyroid antibodies were elevated, and a subsequent ultrasound of my thyroid gland showed that it was full of tiny nodules from the autoimmune destruction. And the whole time my thyroid hormone levels were okay!While you may not have HE, you could very well still have the autoimmune thyroiditis part, which is fairly common in women. This could potentially explain your thyroid-esque like symptoms.It also sounds from the nail description and the purple hands (Raynaud's ??) that you may have something rheumatological going on, either in addition to or instead of a thyroiditis. It might be wise to ask your doctor if they'd be willing to send you to a rheumatologist.I am sorry you don't feel well and don't know why. It can be very very frustrating! Hang in there, as it may take them a while to figure it out. Don't listen to the ones who tell you it's psychosomatic, they will waste your time and money.
    Anonymous 42,789 Replies
    • January 17, 2008
    • 02:44 AM
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  • Have you had your heart checked? Sounds like you need an ultrasound of your heart.Janet Lewis, RN MSN
    Jankim9597 20 Replies
    • January 19, 2008
    • 11:00 PM
    • 0
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  • Two good replies. Esp with the thyroid tests. There is a condition called Vasculitis, that could cause the skin discoloration too. I will add is testing for Lyme disease and Co infections. Hope you get answers soon.Take care~~JerseyLymie
    Anonymous 42,789 Replies
    • January 20, 2008
    • 11:19 AM
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  • My husband had very similar symptoms as you and we found out it was his thyroid. He is only in his 20's. He has hypothyroid and they put him on a small mg dosage of Synthroid and it has helped him alot over the past months. His hands and feet aren't cold like they used to be and his energy level is up. Good luck.
    Anonymous 42,789 Replies
    • January 20, 2008
    • 11:07 PM
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  • Thanks everyone. I'll definietely request the additional thyroid antibody test and ask about heart and rheumatoid disorders.
    ReneeS14 4 Replies
    • January 20, 2008
    • 11:37 PM
    • 0
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  • I have been researching the same symptoms. I am looking into Fibromyalgia, Chronic Fatigue Syndrome, and Whipples Disease. I hope we can find something. I am 25 and have been tired for years!! Ever since I had mono i never felt 'normal' again and that was when i was 18-19
    Anonymous 42,789 Replies
    • January 22, 2008
    • 08:01 PM
    • 0
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  • Many of the symtoms mentioned by multiple people on this listing are consistant with b12 deficiency. For instance, hypothyroid is a co-correllate of b12 deficiency, they both tend to happen together but the cause is unknown. A person can have a functional deficiencies that respond promptly to methylb12 despite every test not showing a deficiency. No test extect a b12 trial can demonstrate sufficiency. Basically all the symtoms of FMS and CFS are also b12 deficiency symtoms. Good luck. B12 DEFICIENCY SYMTOMS, SIGNS AND CO-CORRELLATEShigh urine MMA (specific shortage of adenosylcobalamin) high serum homocystein (specific shortage of methylcoabalmin) mouth sensitive to hot and cold sore burning tonguebeef-red tongue, possibly smoother than normalsore mouth, no infection or apparent reasonteeth sensitive to hot and coldburning bladder (no UTI)painful urgency (no UTI)burning urethra (no UTI)burning muscle painaccumulating muscle pains following exertionsore muscleslack of muscle recovery after exerciseexercise does not build muscledyspepsia - sick stomach, nausea, regurgitation, vomiting, bloating, not emptying, etcflatulencealtered bowel habitsabdominal painloss of appetite for meat, fish, eggs and/or dairy foods, the ONLY foods containing b12 - nutrient specific anorexiaintermittent constipationintermittant diarrheairritable bowel syndromeCrohns disease (direction of causality if any not established)Celiac disease (direction of causality if any not established) - gluten sensitivityDairy sensitivity, lactose and/or proteins (direction of causality if any not established)Sores, ulcers and lesions along entire GI tract or any partreduced libido - loss of sexual desireloss of orgasmic intensity, unsatisfying orgasmsinability to orgasmloss and/or change of genital sensationunable to become arousedMENerectile disfunctionWOMENpost partum depressionpost partum psychosisFalse positive pap smearsmenstrual symptomspalenessrapid heart rateshortness of breathheart palpitationsweak pulsecongestive heart failureHypothyroid (direction of causality if any not established)psychosis, including many of the most florid psychosis seen in literature, formerly known as megoblastic madnessAlzheimers (very recent research, 2007)irritabledepressionmaniadizziness - even unable to walkdeliriumdementiaparanoiadelusionshallucinationsmental slowingpersonality changeschronic malaisepoor concentrationmoodinesstirednessmood swingsmemory losslistlessnessanxiety or tensionnervousnessimpaired connection to othersmentally fuzzy, foggymild to extremely severe fatiguecontinuous extremely severe fatigueeasy fatiguabilitysevere abnormal fatigue up to and including apparent paralysis leading to deathweaknesssleep disordersnon restorative sleepalteration of touch all over body, can be unpleasant and painfulalterations and loss of tastealterations and loss of smellloss of smell and taste of strawberries specificallyroughening and increased raspiness of voice, can smooth in mid word with methylb12blurring of vision - can be sudden onset and sudden returndimmed vision - usually not noticed going into it because change can be very slow, or present for lifeVisual impairment can be seen; ophthalmological exam may show bilateral visual lossoptic atophycentrocecal scotomatadiminished hearing - gradual onset or present for life, sudden returntinnitus - ringing in earsalways feeling coldBrainstem or cerebellar signs or even reversible coma may occurneural tube defect not caused by folate deficiency or child with itdemyelinated areas on nervessubacute combined degenerationaxonial degeneration of spinal cordunsteadiness of gaitataxic gait, particularly in darkpositive Rombergpositive LhermittesPositive bilateral Babinski reflexneuropathies, many typesprogressive bilateral neuropathiesdemyelination of nerves - white spots on nerves on MRIsloss of detail and sensual aspects of touch all over bodyparesthesias in both feet - burning, tingling, cobwebs, wet, hairs, pain, numbness, etcparesthesias in both legs - burning, tingling, cobwebs, wet, hairs, pain, numbness, etcparesthesias in both hands - burning, tingling, cobwebs, wet, hairs, pain, numbness, etcparesthesias in both arms - burning, tingling, cobwebs, wet, hairs, pain, numbnessLoss of position sense is the most common abnormality (or vibration sense)Loss of vibration sense is the most common abnormality (or position sense)hands feel gloved with loss of sensitivityfeet feel socked by loss of sensitivitytoes turn up instead of down in reflex to sole stimulationsudden electric like shocks/pains shooting down arms, body, legs shooting down from neck movementstanding with eyes closed, a slight nudge or bump causes loss of balancemost patients have signs of both spinal cord and peripheral nerve involvementMotor impairment may range from only mild clumsiness to a spastic paraplegiaclumsinessslowed nerve impulsesThe effect on reflexes is quite variabledecreased reflexesdifficulty swallowingbrisk reflexesbrisk reflexesimpaired white blood cell responsedecreased deep tendon reflexpoor resistance to infectionseasy bruisingpronounced anemiamacrocytic anemiamegablastic anemiapernicious anemiadecreased blood clottinglow hematocritMCV > 94 first warning, MCV > 99 alert (Mean Corpuscular Volume)elevated MCH (Mean Corpuscular Hemoglobin)elevated LDHbig fat red cells (when said this way usually with happy or healthy modifying it, completely misinterpreting results of MCV)platelet disfunction, low countwhite cell changes, low countheadachesinflamed epithelial tissuesinflamed endothelial tissuesmucous becomes thick, jellied and stickydermatitis herpetiformis, chronic intensely burning itching rashfrequent infected folliclesSeborrheic dermatitisdandruffeczemadermatitisskin on face, hands, feet, turns brown, or yellow if anemia occurspoor hair conditionthin nailspainfully tight muscles, especially legsfrequent muscle spasms anywhere in bodyBariatric surgeryDilantin and some other medicationsrelative (parent, grandparant, sibling, child, grandchild, ever needing B12 shots or supplementsAS INFANT OR CHILDdelayed myelinationfailure to thriveautismdelayed speechdepressionfrequent toncilitisfrequent strepfrequent pneumoniafrequent longlasting supposed viral illnesses that linger and linger and lingereverything goes to the lungs for extended periodsheadachesgrowing painsskin problemsdandruffallergiesasthma
    Freddd 3,576 Replies
    • January 23, 2008
    • 10:31 PM
    • 0
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  • Renee, your signs and symptoms are very suggestive of CREST scleroderma. It causes the severe senitivity of cold in hands and feet, which can eventually progress to the color changes of Raynaud's. It does seem to cause fatigue and possibly related to that, many people with CREST develop sleep apnea which further contributes to the fatigue. Hashimoto's thyroiditis also often goes with CREST. Some doctors believe that TSH levels above 3.0 should be treated, and this was the announcement that the American Association of Clinical Endocrinology came out with in about 2001 or 2002. Other docs still disagree with that. Looking back on it mine was above 3.0 ever since about 2003, and it was ignored by all my doctors. As a result, by the time they started treating it, I had developed severe sleep apnea. I said to the new endocrinologist who treated me, "I've heard that hypothyroidsm causes sleep apnea." He replied, "Correction... UNTREATED hypothyroidism causes sleep apnea! Man, I could tell he was steamed at the fact my doctors had ignored it.Getting back to scleroderma. It causes vasculitis, and one of the areas which are visably affected by the vasculitis are the tissues immediately surrounding the nails (nail fold area), which become inflamed and shiny. In CREST the fingers can develop ulcurs, and affected skin can be very dry and itchy.Other symptoms that can go with CREST are swelling ankles and fingers, body aches, tendonitis, gastric reflux, or the sensation that food lingers in the lower esophagus, little red or purplish marks on the skin that blanch under pressure (telangiectasias), Raynaud's, and more. Or you may have only some of these things.If this sounds like you, go to a rheumatologist, and ask for the ANA test. If that is positive, make sure he knows your symptoms, and ask for the SCL-70 and anticentromere B antibody tests, regardless of the ANA staining pattern.
    DaisyDo 13 Replies Flag this Response
  • Wow this makes so much sense to me now. I have been suffering from the same symptoms and couldn't understand why. Lab testing came back normal, aching muscles with no relief. Cold feet and hands even with socks and gloves on with the temp set at 78 degrees at home, with chill bumps.And the only thing that I can remember changing is my vitamin regimen where I had stopped my daily B-12 1ooo mcg tablets. And I was thinking if that could possibly be the cause. Thanks for the info.Many of the symtoms mentioned by multiple people on this listing are consistant with b12 deficiency. For instance, hypothyroid is a co-correllate of b12 deficiency, they both tend to happen together but the cause is unknown. A person can have a functional deficiencies that respond promptly to methylb12 despite every test not showing a deficiency. No test extect a b12 trial can demonstrate sufficiency. Basically all the symtoms of FMS and CFS are also b12 deficiency symtoms. Good luck. B12 DEFICIENCY SYMTOMS, SIGNS AND CO-CORRELLATEShigh urine MMA (specific shortage of adenosylcobalamin) high serum homocystein (specific shortage of methylcoabalmin) mouth sensitive to hot and cold sore burning tonguebeef-red tongue, possibly smoother than normalsore mouth, no infection or apparent reasonteeth sensitive to hot and coldburning bladder (no UTI)painful urgency (no UTI)burning urethra (no UTI)burning muscle painaccumulating muscle pains following exertionsore muscleslack of muscle recovery after exerciseexercise does not build muscledyspepsia - sick stomach, nausea, regurgitation, vomiting, bloating, not emptying, etcflatulencealtered bowel habitsabdominal painloss of appetite for meat, fish, eggs and/or dairy foods, the ONLY foods containing b12 - nutrient specific anorexiaintermittent constipationintermittant diarrheairritable bowel syndromeCrohns disease (direction of causality if any not established)Celiac disease (direction of causality if any not established) - gluten sensitivityDairy sensitivity, lactose and/or proteins (direction of causality if any not established)Sores, ulcers and lesions along entire GI tract or any partreduced libido - loss of sexual desireloss of orgasmic intensity, unsatisfying orgasmsinability to orgasmloss and/or change of genital sensationunable to become arousedMENerectile disfunctionWOMENpost partum depressionpost partum psychosisFalse positive pap smearsmenstrual symptomspalenessrapid heart rateshortness of breathheart palpitationsweak pulsecongestive heart failureHypothyroid (direction of causality if any not established)psychosis, including many of the most florid psychosis seen in literature, formerly known as megoblastic madnessAlzheimers (very recent research, 2007)irritabledepressionmaniadizziness - even unable to walkdeliriumdementiaparanoiadelusionshallucinationsmental slowingpersonality changeschronic malaisepoor concentrationmoodinesstirednessmood swingsmemory losslistlessnessanxiety or tensionnervousnessimpaired connection to othersmentally fuzzy, foggymild to extremely severe fatiguecontinuous extremely severe fatigueeasy fatiguabilitysevere abnormal fatigue up to and including apparent paralysis leading to deathweaknesssleep disordersnon restorative sleepalteration of touch all over body, can be unpleasant and painfulalterations and loss of tastealterations and loss of smellloss of smell and taste of strawberries specificallyroughening and increased raspiness of voice, can smooth in mid word with methylb12blurring of vision - can be sudden onset and sudden returndimmed vision - usually not noticed going into it because change can be very slow, or present for lifeVisual impairment can be seen; ophthalmological exam may show bilateral visual lossoptic atophycentrocecal scotomatadiminished hearing - gradual onset or present for life, sudden returntinnitus - ringing in earsalways feeling coldBrainstem or cerebellar signs or even reversible coma may occurneural tube defect not caused by folate deficiency or child with itdemyelinated areas on nervessubacute combined degenerationaxonial degeneration of spinal cordunsteadiness of gaitataxic gait, particularly in darkpositive Rombergpositive LhermittesPositive bilateral Babinski reflexneuropathies, many typesprogressive bilateral neuropathiesdemyelination of nerves - white spots on nerves on MRIsloss of detail and sensual aspects of touch all over bodyparesthesias in both feet - burning, tingling, cobwebs, wet, hairs, pain, numbness, etcparesthesias in both legs - burning, tingling, cobwebs, wet, hairs, pain, numbness, etcparesthesias in both hands - burning, tingling, cobwebs, wet, hairs, pain, numbness, etcparesthesias in both arms - burning, tingling, cobwebs, wet, hairs, pain, numbnessLoss of position sense is the most common abnormality (or vibration sense)Loss of vibration sense is the most common abnormality (or position sense)hands feel gloved with loss of sensitivityfeet feel socked by loss of sensitivitytoes turn up instead of down in reflex to sole stimulationsudden electric like shocks/pains shooting down arms, body, legs shooting down from neck movementstanding with eyes closed, a slight nudge or bump causes loss of balancemost patients have signs of both spinal cord and peripheral nerve involvementMotor impairment may range from only mild clumsiness to a spastic paraplegiaclumsinessslowed nerve impulsesThe effect on reflexes is quite variabledecreased reflexesdifficulty swallowingbrisk reflexesbrisk reflexesimpaired white blood cell responsedecreased deep tendon reflexpoor resistance to infectionseasy bruisingpronounced anemiamacrocytic anemiamegablastic anemiapernicious anemiadecreased blood clottinglow hematocritMCV > 94 first warning, MCV > 99 alert (Mean Corpuscular Volume)elevated MCH (Mean Corpuscular Hemoglobin)elevated LDHbig fat red cells (when said this way usually with happy or healthy modifying it, completely misinterpreting results of MCV)platelet disfunction, low countwhite cell changes, low countheadachesinflamed epithelial tissuesinflamed endothelial tissuesmucous becomes thick, jellied and stickydermatitis herpetiformis, chronic intensely burning itching rashfrequent infected folliclesSeborrheic dermatitisdandruffeczemadermatitisskin on face, hands, feet, turns brown, or yellow if anemia occurspoor hair conditionthin nailspainfully tight muscles, especially legsfrequent muscle spasms anywhere in bodyBariatric surgeryDilantin and some other medicationsrelative (parent, grandparant, sibling, child, grandchild, ever needing B12 shots or supplementsAS INFANT OR CHILDdelayed myelinationfailure to thriveautismdelayed speechdepressionfrequent toncilitisfrequent strepfrequent pneumoniafrequent longlasting supposed viral illnesses that linger and linger and lingereverything goes to the lungs for extended periodsheadachesgrowing painsskin problemsdandruffallergiesasthma
    Anonymous 42,789 Replies
    • December 10, 2010
    • 00:46 AM
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  • Sounds like you could have anemia.
    Anonymous 42,789 Replies
    • January 22, 2011
    • 02:30 AM
    • 0
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