Discussions By Condition: I cannot get a diagnosis.

please help

Posted In: I cannot get a diagnosis. 36 Replies
  • Posted By: Maggie787
  • March 2, 2009
  • 09:31 AM

For years now I have sought diagnosis, always to be placated and told "it's all in your head".Well, it isn't in my head...it's my whole body...always feel like I stepped out of a freezer! Even in 98 degree heat, I need a sweater! People actually recoil when they touch me, cauz I am so dang cold! I avoid shaking hands now, as it makes people shiver to touch me! I feel like I move in slow-mo....have no energy and since turning 18, have not been able to shed one pound, without starving myself. If I eat 500 calories or under a day, I only lose 1 pound a week. I am an active mum, and college student, who holds a part time job, so it isn't from inactivity. To give you an idea of HOW low my body temp is, it ranges from 95.2 to 96.6....if my temp is 98, I am sick.
My B/P also runs quite low....95/55...to 112/60. Sadly this condition does not only effect me, but all the women in my family, so I know it isn't all in my head...I feel like I am taking crazy pills, b/c it can't be normal to feel like an ice cube year round!
I have had thyroid tests...all came back fine.... I do not have diabetes, but do have hiritsuism, and very dry skin. Also thinning hair, lack of body hair growth,always tired, groggy.....I am on no meds...dr thinks my low b/p is causing most of my problems. At this point, I will see any dr who thinks that they can help me...I am sick of freezing all the time...in my house the heat is on 80, and I am still wearing 2 shirts, a fleece bathrobe,heavy socks and slippers, and am still cold! I would just once like to feel normal, and feel warm. Interestingly enough, if I get too warm, I break out in hives or rashes...and get very nauseated. ANYone have any answers?:(

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36 Replies:

  • Few questions:1) weight, height, age2) you mentioned a normal thyroid test, which tests did they do exactly (sometimes it helps to get a repeat)3) where exactly are you abnormally hairy? chest, moustache, beard etc4) are your periods regular? 5) when did you have your first menstruation?6) how long have you been eating only 500 calories a day?7) have any women in your family been diagnosed with any endocrine disorders?8) are you tanned in non-sun exposed areas (i.e. groin region)9) how long have you been feeling coldYour constellation of problems highly suggests an endocrine disorder. Your family GP will probably not be able to diagnosis you and it is recommended to seek referral to see an endocrinologist in your area.
    Anonymous 42789 Replies Flag this Response
  • I weigh 220, am 40..5'5TSH T3 T4...I think those are the correct tests for thyroidHiritsuism shows on chest, chin, face, and abdomenPeriods were horribly heavy, had an ablation in 2003,b/c I was going thru 60 pads a month,my hematocrit was down so low, I was severely anemic from the blood loss. They have been pretty good up til now, they are starting to come back just as heavy, and I am suffering anemia again.age 13 was the beginning of my mensesI ate 500 or less calories a day for 5 months...in that time, I also added 2 hrs per day of cardio workout...lost 25 pounds in that period...as soon as I stopped eating that way, gained it all back, plus 15 pound extra. My dr says my metabolism is very slow...he figures I could eat about 300 cal a day and be fineMy skin is so milk white you'd think I was a ghost. I do not tan...nor do I burn...I am this white year round, no matter how much time I spend out of doors. My skin is slightly darker in creases. My metabolism changed after I turned 18.... I USED to weigh 130,until I had my first pregnancy....after the pregnancy, I began having thinning hair, hiritsuism,constant feeling of freezing...which got worse over the years...I have seen scads of Dr/s....all say the same thing...in my head ...but we are from small rural town, and they don't take much time with you here.I am cold all the time, and cannot stand it any more. I have seen endocronologists in this small rural area, but the last one I saw told me & hubby that it was all in my head, ,I likely suffer from depression, and that is why I am so cold all the time. I left there in tears, when he said that he recommended that I eat more, gain 52 pounds( thats how much I'd have to gain to qualify) and sign up for gastric bypass surgery! That's NOT an answer to why I am always so dang cold! I have a sibling who had bypass, and she is still always cold...my other siblings are heavy still, but freezing all the time as well...and my mum is now suffering from involuntary random paralysis issues ...presently, for no reason, her eye muscle is paralysed, and Dr cannot figure out why.We all also have breast overgrowth issues...the breast tissue doesn't stop growing...and we get quite hefty busted,,,mum was in a 52 I before she had reduction surgery....they have grown back some since having it done...I am present in a 40 G....and growing. So, in answer to your last ?....How long have I been cold...about 20+ years now, but it is getting worse, and I now spend most days wrapped in layers, shivering like a naked chihuahua!I heat towels in the dryer and wrap those on for a burst of heat....and wear a fleece bathrobe constantly over my layers of clothing.Towards the end of the day, the shivering gets so bad that it tightens my stomach,and I feel queasy.
    Maggie787 10 Replies Flag this Response
  • also forgot to mention, if this helps, we are all built the same...skinny legs and arms, big busts and bellies, upper arms are chunky....upper leg is chunky...all lower appendages are thin..faces are round, very dark circles under eyes. Looks like we were put together with the wrong parts :) kind of like a barrel on toothpicks.
    Maggie787 10 Replies Flag this Response
  • actually, no. I lived in the country, near nothing...very rural area, which I greatly enjoyed. Most of my family live in rural areas...my sisters being the exception. My mum is well into her 60's and they didn't have such towers when she was younger...she has always been cold like this. My grandmother on the maternal side suffered from the same symptoms...and she never lived near towers and the like. She too had hiritsuism, and felt cold, couldn't lose a pound after she stopped puberty, and had bone/ joint problems. The only women in the family who suffer this are from the maternal side.
    Maggie787 10 Replies Flag this Response
  • In traditional Chinese Medicine we would call your coldness due to a constitutional deficiency of "yang". What is your diet like? Do you eat a lot of raw fruits and veggies? What is your digestion like? Do you have gas and bloating after you eat and do you suffer from loose stools or constipation? If you can find this in a rural area, I recommend fresh ginger tea. Also cayenne powder and curry powder added to your foods. These food therapies may help. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • I eat a diet of chicken fish and turkey, veggies and some fruits..mostly apples and berries. I only eat red meat once a week.do not eat pasta...as it makes me sleepy...don't eat pizza for the same reason...I get really sleepy if I eat it.
    Maggie787 10 Replies Flag this Response
  • forgot one more very odd thing, which is recently happening...last 4 months...sometimes, not every time....sometimes, urine smells horrible...like burning plastic...no bladder pain or anything, just that awful odor.
    Maggie787 10 Replies Flag this Response
  • Re: also forgot to mention, if this helps, we are all built the same...skinny legs and arms, big busts and bellies, upper arms are chunky....upper leg is chunky...all lower appendages are thin..faces are round, very dark circles under eyes. Looks like we were put together with the wrong parts :) kind of like a barrel on toothpicks.Well you sound Cushingoid in appearance. Refer to this link to see how well you compare. http://www.csrf.net/images/lady.gifAny endocrinologist worth his salt should have picked it up with one look.
    Anonymous 42789 Replies Flag this Response
  • also forgot to mention, if this helps, we are all built the same...skinny legs and arms, big busts and bellies, upper arms are chunky....upper leg is chunky...all lower appendages are thin..faces are round, very dark circles under eyes. Looks like we were put together with the wrong parts :) kind of like a barrel on toothpicks.Sounds like you have a cushingoid appearance. Do a search on google images for "Cushing syndrome" and see how you compare with them.However it is unlikely that an endocrinologist will miss that if you did see one.
    Anonymous 42789 Replies Flag this Response
  • Maggie, I suffered the EXACT same thing for over 10 YEARS. I was recently (6 months ago) diagnosed with hypothyroidism. Now that I'm on the correct meds I feel fabulous! All my tests also came back "normal". The problem is the test NOT you. TSH tests whether the pituitary gland is telling the thyroid to make thyroid hormone, but it does not tell if the thyroid itself is working aka making the hormone! I urge you, really urge you, to find a proper doctor who can actually help you. You will find your doctor on Mary Shomon's "top thyroid doctors" list found here: http://www.thyroid-info.com/topdrs/You can also find information on Mary's Shomon's website (just look up her name on google) and the "Stop the thyroid madness" website. It is very very important that you educate yourself so you will understand what is going on. It's not rocket science. There are tens of thousands of us, just like you. Don't give up. My best advice to you is to get to a proper doctor ASAP because you don't have to suffer another day like this and you can feel better than you ever realize was possible.
    Anonymous 42789 Replies Flag this Response
  • well,if you recall from my earlier posts, the endocronologist I saw was the one who told me to gain 52 more pounds and have gastric bypass! I have purple marks on my belly, thighs, breasts and under upper arms, but attributed them to pregnancies. My sons both have those deep purple marks on belly arm and thighs.The marks they have are significantly darker than mine. I don't have a buffalo hump,but do have thinning hair, and some of the other symptoms. I think that endo checked my cortisol level and said it was fine. I also had an extensive panel done for pituitary...which I was told came back fine also. As I said, something is not right....but to date, I have not been able to get an answer.:(
    Maggie787 10 Replies Flag this Response
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  • I eat a diet of chicken fish and turkey, veggies and some fruits..mostly apples and berries. I only eat red meat once a week.do not eat pasta...as it makes me sleepy...don't eat pizza for the same reason...I get really sleepy if I eat it. Get your B12 levels checked and make sure you know the number. If it is under 500 you should be treated for B12 deficiency IMO. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • I think that endo checked my cortisol level and said it was fine. I also had an extensive panel done for pituitary...which I was told came back fine also.Do not think, be sure. Check your results. There are 2 tests they tend to do for Cushings. A 24 hr urine collection test and a dexamethasone suppression test were you take some tablets overnight or a few tablets over 2 days and then they draw some blood. Have you done these tests? If so find the report and quote the results.Remember if all else fails, get a second opinion from another endocrinologist preferably at a tertiary referral hospital.
    Anonymous 42789 Replies Flag this Response
  • I know I had a 24 hr urine test done, but I think that it was for testosterone level check...for the hiritsuism. I never had one done with pills for any reason.As I said before , all the women on the maternal family side have these issues...so it cannot be "in my head". Finding a doctor in our rural area who won't simply dismiss me as a premenopausal female will be very difficult.Most treat their patients as simple brained farmers, with no need for any care other than the most basic.
    Maggie787 10 Replies Flag this Response
  • I know I had a 24 hr urine test done, but I think that it was for testosterone level check...for the hiritsuism. I never had one done with pills for any reason.As I said before , all the women on the maternal family side have these issues...so it cannot be "in my head".Finding a doctor in our rural area who won't simply dismiss me as a premenopausal female will be very difficult.Most treat their patients as simple brained farmers, with no need for any care other than the most basic. Where exactly do you live?DOM
    acuann 3080 Replies Flag this Response
  • The 2 tests I was talking about are1) 24 hr urinary cortisol level2) Dexamethasone suppression testBoth are to test for cushings and the cause of it. If you are unable to find an endocrinologist (it must be an endo specialist since your primary care physicians or run of the mill GP are not capable of performing this) in your area, you may wish to travel to a local city or referal clinic for this.Best of luck!
    Anonymous 42789 Replies Flag this Response
  • She sounds like she has Cushing's Disease,but how do we explain her hypothermia?She sounds like someone with polycystic ovary syndrome,too.
    richard wayne2b 1232 Replies Flag this Response
  • Plus,her low blood pressure goes against Cushing's.
    richard wayne2b 1232 Replies Flag this Response
  • Again, how is your period? Any cramping or irregular cycle? How is your digestion and how frequent are your stools? Do you suffer from constipation or diarrhea? Best wishesDOM
    acuann 3080 Replies Flag this Response
  • I live now in the Mohawk Valley...upstate NY...before that I lived in Onieda county...I have seen dr's in syracuse, utica, rome, and herkimer NY...all of them said that it is in my head...I am depressed, or I am, as the doctor in syracuse said "just a fat pig that needs weight watchers". I might be inclined to agree that it is in my head...as to date,nothing can be figured as to why members on maternal side have these issues.My menses are, as I said before...were VERY heavy...required over 60 pads per month...my hematocrit was wicked low at the time...severe anemia...had uterine ablation surgery in 2003...it stayed mild after the surgery, but is recently(last 6 months) picking up in heaviness again, causing anemia to return...not to the degree prior to surgical intervention...Stools vary...but I have IBS, so that is common with me..... I picked up a bottle of Feosol iron tabs yesterday to stem the anemia from getting as bad as it was pre surgery. Basically, After age 18, something shuts down in maternal family line, and we get fat deposits in only upper appendages,belly, breast overgrowth, and a front of the neck fat necklace.... thinning hair on head, and legs/underarmsplus dark black hair growth on chin, chest, face, lower abdomen...which is odd b/c we are all blondes!we are all freezing cold, no matter if fat or thin(sister that had gastric bypass still suffers freezing skin issue) we all have low blood pressure....a few of us suffer migraines from anemia/blood pressure issues....I know that myself and one of my cousins cannot have dental work done because of blood pressure issue....they won't perform dental surgery if your B/p is too low. My last B/p was 112/63 and my temp at the time was 96.2( 5 weeks ago)Prior to 18, we were all of normal health weight/body mass....except...well,no matter how much we exercised, our body remained doughy...no muscle tone or definition....like a shar-pei dog...a lot of untoned skin... At 18, I weighed 120...exercised cardio/dance, rode bike,hiked,....still do those things...still doughy and cold! when my oldest boy went into the military, he weighed 170...but was doughy....we figured basic training would fix that....but he came home just as doughy as he was when he left, and has been struggling with these issues since. Our daughter is a vegetarian, who works out in gym daily...she is thin, but doughy...and has the issues I described. Our 2nd son works out 3 hours a day with weights and cardio....he is also thin, but doughy with no definition...which he should have since he works out as much as he does. We all have purple striations on belly,chest,inner thighs....no idea what those are. figured they were stretch marks...The males don't seem to have issues being cold....all females are constantly freezing....and this female is sick to tears of being so cold! I would appreciate some help....and very much appreciate all your efforts on my behalf. I would love to find out what this is, and help our family be healthy again!
    Maggie787 10 Replies Flag this Response
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