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EndocrineWeb Community Advice

Please help me. undiagnosed.

From: xpixiesrevengex - 6 years 5 weeks ago

I am 22 yo. When i was 16 I began getting sick with my disabling chronic headaches. In the past 7 years I have gained 120 pounds barely eating. I can barely exercise because my head hurts so bad and gets worse when I do activity. I was diagnosed with everything from tension headaches, migraines, to psychological. Finally I got a doctor who diagnosed me with insulin resistance saying that the medication I was on would solve all my problems. It didn't. He sent me to a spine doctor to have a cortisone injection because we have tried so many tests and medications but nothing works. She said my symptoms pointed in the direction of cushing's disease so she didn't give it to me.

I have been tested twice for cushing's and it says I do not have that. I have done many years of research and I have almost ALL of the symptoms of cushing's.

She felt my thyroid and it is said to be enlarged but it has fine function so I'm getting an ultra sound for pcos and thyroid nodules. I'm pretty sure I have been tested for Pcos before but nothing makes sense.

I know endocrinology is where the answer lies... I just don't know where.. if anyone knows anything please help... my symptoms are:

*disabling headaches
*few to no periods.. with either really heavy flow to spotting when i have one
*bad acne
*facial && belly hair (abnormal amount)
*weight gain with trouble loosing it
*infertility
*insulin resistance
*dizziness
*lethargy
*insomnia
*high blood pressure
*high chlosteral
*trouble sleeping
*anxiety
*enlarged thyoid ( i guess)
*numbness && tingling with shooting spikes sometimes when I touch my arm
* back pain
*nausea
*sensitivity to sound, smell && light (depending on the day)
*also have had kidney stones && random allergies out of nowhere

please help me.. if your going through this too... even if you don't have an answer.. i feel so alone.

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18 Responses

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well first thing is you are not alone lot of the symptoms you are having i have had through out my life. and it sounds like you have several different things going on at the same time. it may help if i tell you what i have gone through. my troubles i believe is when my 16 year old brother died and i have been battling depression and anxiety ever since. depression can throw off alot of you body chemstry.
i have headaches everyday sometimes migraines i started having migraines when puberty struck but as the time goes by they came on fewer but i found excederin migraine works the best for an over the counter med. and the symptoms i had and have when i do get a migraine is the sensitivity to light ,sound, and smell which will also bring on nausea and vomiting. my mom allows called it a sick headache. so that is a possiblity for some of your symptoms.
i don't know if they have done any blood work on you but have them check you blood calicum level numbness and tiggling goes with this. maybe development of kidnes stones as well because from what i was told that kidney stone are hardened calicum. have them check your perithyroid gland they are the ones that control the calcium in your blood.
i have been heavy most of my life and my weight is the cause of alot of problems. i have pcos what you get with that is facial and body hair irregular periods or none at all, infertility and acne as well. i was told my hormone levels were off and that the male hormone was higher then the female hormone. have them check your hormone levels.
enlarged thyroid gland, weight gain, insomnia, lethargy, could be signs of hypothyroid. with insulin resistance can causes dizziness due to your gulcose level. high blood pressure and high cholestrol come from being overweight and alot of times it runs in the family. depending on where your back pain is if it is around where your kidney's are you might have more stones. but if is lower back pain it is most likely do to your weight. then wrapping all these symptoms up into one. you have alot of stress and that brings on anxiety. what i would have my primary doctor do is set up a complete blood panel. hormone levels, thyroid levels, blood calicum levels, cholestrol and a fasting A1C which is glucose level. and whatever results you get from that go from there. one thing is to tell your doctor how you feel and don't leave anything out all information is benefical. and you probably heard this lots of time but find a weight loss clinic alot of time they are in with the endocrine centers see if they can help you figure out how to loss some weight. even a little lost is helpful.
my heart goes out to you because i know what you are going through. what has helped me the past 5 years is god. when i excepted jesus into my life a flood of peace came over me. i still worry but it is the little unimportant worries. big worries i give over to god it might help to find a church that teaches from the bible and talk to the pastor there he might have some ideas about helping you as well. i hope this info helps you and i will be praying for you.

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Thank you. I'm doing everything I can possibly do to loose weight but as I'm sure you understand when your so sick.. its very hard. I also barely eat so I have been eating more regularly and have lost a little bit of weight. Im a vegan and my whole life have been a vegetarian so I don't really have bad eating habits (and yes, i take all my b12 && vits) . The back pain is all over.. usually in the top region. I have had my a1c tested but I will ask for a full blood panel. They are checking for PCOS soon but my headaches are the worst and what I feel is most important for me to figure out. I'm in excruciating pain constantly. I just found out about my thyroid being enlarged but my thyroid function is normal.... i'm just very confused. thanks for the adv ice

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i have been check on something i just remember about what is called kiari (chiari) malformation the symptoms are as follows
dizziness
muscle weakness
vision problems
headaches
balance problems
neck pain
numbness or other unusual feelings in the arms or legs
difficulty swallowing
ringing or buzzing in the ears
hearing loss
vomiting
insomnia
depression
some of these symptoms is determined by the severity of the condition. to find out if you have it i believe they will do a MRI on your head and neck to check.
i really would love to help you feel better. like i said alot of what you have is what i have or had or thought i had even kiari malformation. when they thought i had the condition they explained it as the skull is not given the brain stem enough room and that the brain stem is being squeezed. and they told me that to fix it was to remove a piece of the bone in that area for the brain stem to have room. i pray that this is the culprit so you have something tangible to say this is what i have. i know what it's like to have symptoms of something and the doc's seem to pull out all the tests and cannot find the problem.
i will be praying for you and i hope this is the answer.

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hi, i've been thinking about you and hope you are feeling better. i was just reading my guidepost and i read about a women who had daily debilitating migraines and they found that she was allergic to wheat and since she stopped eating anything with gluten she does not suffer with the migraines. you can go to guideposts.com/glutenfree. praying for you and i hope god reveals an answer soon.

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thank you. I'm pretty sure I have already been checked for the skull thing. I went to the dr to get an ultra sound today. I overlooked the lady's shoulder and she did write that I had cysts on my ovaries, large ovaries, ext. (all the symptoms of pcos + high testosterone levels) . The problem is I asked the endocrinologist if this caused headaches. She said NO. As much as the other issues are problems... my headaches are disabling. I've been checked by nose, eye, ear, neurologist, ext. I recently get checked for allergies... Thank you of thinking of me. I'm afraid that when i get diagnosed with Pcos that my headaches will be put on the back burner again! I guess, I'm hoping now that they find a reason for my thyroid being enlarged. Thank you for your advice.

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I'm glad you have answers to some of your symptoms. for the headache's don't let them put it on the back burner. you tell them that you are the one who is suffering every day and you want to know why? i know some doctors do not like out spoken patients but sometimes it has to be that way. so i guess what i am saying is make sure your doctor understands the headache issue is the most important matter to you and that you want to find some answers. i am thinking of you and praying for you. my hope is you start to feel better very soon. take it easy and god bless.

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Hello there,
I hope that you still go on reading this website or have subscribed. I do not have many answers but I am going through a similar thing so I understand all too well what you are going through. You are not alone.
I have been developing more or less your symptoms since I was 28. I am now 32 and have only been diagnosed with PCOS recently. PCOS does not explain many symptoms except infertility, hirsutism, weight gain and absence of periods (plus diabetes in some cases).
I also saw an endocrinologist this week and he thinks I have Cushing's syndrome. All along I thought I had hypothyroid as I have a history of hypothyroid in my family as well as early menopause. However, according to my endocrinologist, Cushing's syndrome creates weight gain (stomach) and abnormal hair growth as well as PCOS. I have got also lots of neurological problems which have developped such as memory, concentration, hallucinations, etc...
I have also now got allergies (I had no allergies for 28 years though my father has got tons of allergies. Lots of them are hereditary I think). It is the first time I see someone mentioning it so please update your post when you know a bit better.
I am going for lots of tests and will keep you updated.
I do not know if you have asked your parents, grandparents and close relatives if they have any diseases related to hormones or else to help you get a bigger genetic picture. It can help sometimes. Also, do not give up and push to get exams and see specialists until you are satisfied with the answers. Trust your instincts.
All my thoughts are with you. Take good care of you and be kind to yourself. Let us know how you are doing when you can.
All my best,
Elsa from London

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Elsa,
Thank you. It always means so much to see someone go through what you go through. I have always felt a lone && if you have cushing's then you will see what other people go through && it is similar to what WE have gone through. I have just been diagnosed with hypothyroidism. She said that my antibodies attacked my htp (or w-e it is called) so I'm being put on a medicine. Please keep me updated because she said she's not positive this will cure my headaches but I definitely need to be on meds!!!!

-amy

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Most of the symptoms that you suffer from can also be caused by Hashimoto's Thyroiditis. It is an autoimmune disease that causes the production of autoanti-bodies which attack your healthy thyroid tissue injuring or killing it. This causes hypothyroidism. Swelling of the thyroid is one of the first indications of this problem. Increased antithyroid antibodies provide the most specific laboratory evidence of Hashimoto's Thyroiditis but they are not present in all cases. Stress, depression, and an increased sensitivity to many medications are other symptoms of this disease that can lead to debilitating headaches. I know how you feel and I am also praying for you. Maybe it's time for a new doctor. Good luck and God bless. I hope we hear you are better soon.

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Thank you! I will check into that at the next doctor appointment. This is the best site thank you for all your help guys!

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Newest update! I have now been diagnosed with hypothyroid plus pCOS... The endocrinologist wasn't positive that i didn't have cushing's.. my cortisol is normal but my ATCH is a little high.. @ a 37. - i found that out from my primary who said it would be addison's but I HAVE NO SYMPTOMS of addison's all of cushing's... Any one have any idea's?

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I had and still have some of your symptoms, although my primary physician finally found out the problem. I started my period when I was 12 and never had a "normal" cycle. I used to go 3 months without a period, and when I would finally get it I would have it for a month straight. Very heavy flows that would cause me to leave school early and cramps that would make me vomit. I was put on birth control to regulate my cycle and it worked, except for the heavy flow. I was also told I would never be able to have children. They tested my thyroid function and it always came back normal. I was told to take iron, vitamins, even herbal remedies. Then my weight started to get out of control. My mom had asked me at one point if I was anorexic because I had gotten so thin...the same time next year I was probably 40 pounds heavier, only to have my weight continue to increase. I would get horrible headaches, would wake up in the morning with a lump in my throat, feelings of depression and anxiety attacks, and the mood swings and irritability were uncontrollable. I could also sleep most of the day if I were able to. Finally, (geez, about 15 years after symptoms started) I was choking on my food. Constantly had a lump in my throat. My doctor sent me to an ent who scoped me and found severe reflux, but also a nodule on my thyroid. I went for an ultrasound, then a biopsy to find out I had Papillary carcinoma, AND Hashimoto thyroiditis. Funny thing is when they tested my thyroid function all those years it wasn't accurate because of the birth control. I had a total thyroidectomy almost 2 years ago and I have lost almost 50 pounds, although I am having major trouble getting my synthroid regulated. Hope this helps you...I know what it's like to have people think you're a crazy hypochondriac! Oh, and as for being infertile I have a beautiful 4 year old...so they don't always know everything!! Lots of luck and prayers :o)

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thank you so much...all i can think about is having a baby. I never wanted a child until i met my fiance... & now being told i can't makes me feel like i did this to myself. i know i didn't but i can't help but feel like that. we don't have enough money to adopt or anything of the sorts. it just makes me feel helpless.

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Get checked for chiari malformation

Pleease Google the words

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use someone with experiance that has a great reputation in the area you are getting checked for .
many order sitting up MRIs with certain things done during it to look for things that are routinely overlooked . In my family... they found them where the laying down MRI's failed to find them. ( with two of my duaghters) . One showed a tumor in the lower back that other MRI's had missed entirely and that was not what she was looking for !
Then the doctor looks at the films themselves! they measure and contemplate many things that doctors that do not do this regulary do not contemplate .
Then they advise that surgury will NOT help-- because it won't, or why they think the surgury might help due to what THEY saw with their own eyes. rather than because a image reader was in a hurry and was looking only for one thing and overlooking important clues and measurements that are meaningless to them . There is no way service providers can know all the details of so many rare conditions unless they are focused on them , so the ones that are focused do not trust the words on paper . They want to see the image.

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You are not alone. We have family members looking for answers. Have you found a support group or answers yet? I hope you have . My daughters life may depend or her finding answers. She has some .. But not enough . The search is intense . Have you found some answers yet?

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I am sad to say we are still looking for answers. I've gone to the best of the best and they don't believe me so I am now sticking with my new doctor. They did an ultrasound of my thyroid and that came back good.. now they are looking into a parathyroid tumor.. i was diagnosed with a pituitary tumor & then it magically disappeared so my blood work and diagnosis is still all over the place. many days now where I feel like this is a life long sentence.

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So many of your symptoms are similar to mine and I am also undiagnosed. I have had headaches every day for 5 years. I also have acid reflux and I am now working on seeing if I am insulin resistant. I ha e had mris, my vision tested, and I am getting ready to have my allergies tested. I have had issues with having doctors listen to be and take me seriously. Have you had any new developments??

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