Discussions By Condition: I cannot get a diagnosis.

Hashimoto's or Graves? Doctors ignore me and I'm so scared

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: eatsshootsandleaves
  • May 4, 2009
  • 06:57 PM

Hi everyone...

I'm 26 and over the last 3 years many things have begun to go wrong with me:

~My left eyelid began drooping (ptosis)
~I started ageing rapidly (I have the wrinkles and sagging skin of someone twice my age)
~vitiligo began developing on parches of my skin,
~my hair began shedding in handfulls (diagnosed telogen effluvium, but has since progressed to alopecia areata)
~mental fatigue
~severe muscle fatigue
~headches
~constipation
~weight fluctuations
~my glands are permanently enlarged
~anxious and upset all the time
~my heart is always racing
~irregular periods
~hirsuitism (on chin and cheeks)
~sinus blockages
~jittery limbs

NOTE: I have been on thyorixine since age 18 due to an underactive thyroid, and also many SSRI's due to depression.

I've been to the doctor's so many times over these last 3 years that now they refuse to listen to me. They literally tell me it's "all in my head" and that I should seek psychological help. THIS IS NOT IN MY HEAD. The symptoms appeared and I went to the doctor's about them; what's so wrong with that? I also have photo's of myself from before these problems started and there is vast difference!

No-one will listen to me, not my family, not my friends, nor anyone in the medical proffession. I constantly feel so stressed and scared because of my problems, and no amount of self help literature or positive thinking seems to be of any benefit.

Who can I turn to? I cannot even get a referal to a private consultant because where I live (the UK) this service requires a GP's referal. Should I waste my dwindling savings going to America/Canada in aid of a disgnosis?

Reply Flag this Discussion

11 Replies:

  • Have you had your cortisol levels tested?
    Anonymous 42789 Replies Flag this Response
  • No. I was actually meant to have a cortisol test some time ago but the hospital messed it up and I never asked for another one.
    eatsshootsandleaves 2 Replies Flag this Response
  • Have you had your B12 levels tested? If so, what was the number? Have they checked you for iron def anemia? Are you a vegetarian? If so then I would guarantee you have B12 def and recommend getting on the B12 misdiagnosis thread and talk with Freddd... Are you on birth control pills or another form of hormonal birth control? ARe you taking any other medications other than for thyroid? Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Hi acuann..not anemic, not been tested for B12, not on birth control pills, used to be a vegetarian until about 2 years ago, am currently on fluoxetine but have been on every other SSRI over the last 12 years.I also forgot to add that I've developed severe acne all over my face, jawline, and chest, and also that I've began experiencing severe short term memory loss.
    eatsshootsandleaves 2 Replies Flag this Response
  • Hi acuann.. not anemic, not been tested for B12, not on birth control pills, used to be a vegetarian until about 2 years ago, am currently on fluoxetine but have been on every other SSRI over the last 12 years. I also forgot to add that I've developed severe acne all over my face, jawline, and chest, and also that I've began experiencing severe short term memory loss. Get your serum B12 levels tested. You are showing a lot of symptoms of B12 deficiency, which can cause irreversible neurological damage if untreated. How are your periods? Are you over or under weight? Best wishesDOM
    acuann 3080 Replies Flag this Response
  • GET OFF ASPARTAME!!! YOU MAY BE EATING SUCRALOSE AND OR SPLENDA AND DEF. are eating Aspartame! it is in the diet cokes, sodas, gum, ice cream, lite yogurts, pretty much everything check your labels and make sure you do not eat this stuff!Aspartame gives "Graves Disease" like symptoms.Check the internet for the above aritifcial sweeteners and read everything you find. Some sites will lie about it being healthy but you will know they are lies cause there will be testimonial sites where everyone has what you have and are all sick !! like you and have stopped eating it and are better!Check youtube, facebook groups, google...glarstout
    founddog 188 Replies Flag this Response
  • Have you seen an endocrinologist to have this looked at in-depth? If not, I suggest you do so. If you have Hashimoto's (I have it), you should always be under the care of an endocrinologist ... other physicians typically only test TSH levels on a regular basis; you need several other tests other than TSH on a regular basis, and that is a job for the endocrinologist. In my case, I have to get a blood draw every two months. Hashimoto's, properly treated, is nothing to be concerned about; however, not properly treated ... it can be living h*ll!!
    neurotransmissing 145 Replies Flag this Response
  • It sounds that you could have ssri toxicity or possibly if you have hashimotos the level of thyroid hormone can switch between hypothyroid to hyperthyroid and back to hypothyroid. It' sounds as if you need a new doctor. Demand that they draw your blood to check your hormone levels, I don't know aht else to tell you other than your condition sounds serious.Hi everyone.. .I'm 26 and over the last 3 years many things have begun to go wrong with me:~My left eyelid began drooping (ptosis)~I started ageing rapidly (I have the wrinkles and sagging skin of someone twice my age)~vitiligo began developing on parches of my skin, ~my hair began shedding in handfulls (diagnosed telogen effluvium, but has since progressed to alopecia areata)~mental fatigue~severe muscle fatigue~headches ~constipation~weight fluctuations~my glands are permanently enlarged~anxious and upset all the time~my heart is always racing~irregular periods~hirsuitism (on chin and cheeks)~sinus blockages~jittery limbs NOTE: I have been on thyorixine since age 18 due to an underactive thyroid, and also many SSRI's due to depression. I've been to the doctor's so many times over these last 3 years that now they refuse to listen to me. They literally tell me it's "all in my head" and that I should seek psychological help. THIS IS NOT IN MY HEAD. The symptoms appeared and I went to the doctor's about them; what's so wrong with that? I also have photo's of myself from before these problems started and there is vast difference! No-one will listen to me, not my family, not my friends, nor anyone in the medical proffession. I constantly feel so stressed and scared because of my problems, and no amount of self help literature or positive thinking seems to be of any benefit.Who can I turn to? I cannot even get a referal to a private consultant because where I live (the UK) this service requires a GP's referal. Should I waste my dwindling savings going to America/Canada in aid of a disgnosis?
    Anonymous 42789 Replies Flag this Response
  • Hi I do not know how you feel now, but your symptoms would sit on Autoimmune polyglandular syndrome II. type. So how do you advise others visit here endocrinologist and let you make tests for antibodies
    Anonymous 42789 Replies Flag this Response
  • Because of the drooping eyelid I was wondering if you have had your Thymus checked? Also, curious . . . many of your symptoms matched mine and it turned out to be parathyroid related. Good luck. Hi everyone... I'm 26 and over the last 3 years many things have begun to go wrong with me: ~My left eyelid began drooping (ptosis)~I started ageing rapidly (I have the wrinkles and sagging skin of someone twice my age)~vitiligo began developing on parches of my skin, ~my hair began shedding in handfulls (diagnosed telogen effluvium, but has since progressed to alopecia areata)~mental fatigue~severe muscle fatigue~headches ~constipation~weight fluctuations~my glands are permanently enlarged~anxious and upset all the time~my heart is always racing~irregular periods~hirsuitism (on chin and cheeks)~sinus blockages~jittery limbs NOTE: I have been on thyorixine since age 18 due to an underactive thyroid, and also many SSRI's due to depression. I've been to the doctor's so many times over these last 3 years that now they refuse to listen to me. They literally tell me it's "all in my head" and that I should seek psychological help. THIS IS NOT IN MY HEAD. The symptoms appeared and I went to the doctor's about them; what's so wrong with that? I also have photo's of myself from before these problems started and there is vast difference! No-one will listen to me, not my family, not my friends, nor anyone in the medical proffession. I constantly feel so stressed and scared because of my problems, and no amount of self help literature or positive thinking seems to be of any benefit. Who can I turn to? I cannot even get a referal to a private consultant because where I live (the UK) this service requires a GP's referal. Should I waste my dwindling savings going to America/Canada in aid of a disgnosis?
    firebird56 14 Replies Flag this Response
  • Bump.

    Please help because I read this and I have most of the same symptoms. Just not the skin stuff.

    My TSH has been rocky and I've been put on a trial of thyroxine. No explanation as to why my TSH is going crazy... It's not really high, but goes up and down dramatically in the space of a couple of days, sometimes showing hypo. I've noticed my left eyelid keeps drooping and it looks absolutely AWFUL and I don't know WTF is wrong with me because I have no antibodies for Hashi's. My face and body seems to be aging RAPIDLY and I'm very concerned that I'm literally aging too fast, I'm only 23.

    I also have permanently enlarged glands. These have been checked with ultrasound and CT Scan and deemed safe, but they are on the right side of my neck and under my chin. I guess it could be dental, but they've been enlarged for months and months now. My lower abdomen is almost always bloated slightly.

    I just got my cortisol test back, 9 am and 473 nmol/L.
    Anonymous 1 Replies Flag this Response
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