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664546 tn?1225364034

PLEASE ADVISE! I am losing my mind, and NO ONE will help me!?

I'm getting desperately frustrated with doc's telling me I am "just suffering from stress and anxiety", when I have ENDLESS physical symptoms indicating that something physical is going on with me, and the problems have been going on and on for almost 2 years now.... AND SPECIFIC NUMBERS FROM LABWORK INDICATE A POSSIBLE MEDICAL PROBLEM!  
Tonight, for no reason that was apparent to me, (resting, watching a movie) I just happened to notice out of the corner of my eye, a large portion of my chest, 2 almost perfect ovals on my cheeks, "slashes" around my neck, my right ear and right shoulder and right upper arm had all turned BLOOD RED.... like 2nd degree sunburns....  NOTHING was touching them, I hadn't even moved a muscle that could have caused it to happen "externally."  I took pictures, that look like someone took an iron to the upper right side of my body.  I have had itching, dry, scaly, gross STUFF on my face that seems to just travel around without healing for literally YEARS without going away.. I've been thru 3 dermatologists... 4 entire tubes of bactriban, a course of doxycycline, a billion dollars in expensive face washes, and I'm LOSING MY MIND. I sweat about 24 hours a day, and feel like I'm going completely INSANE when I am too hot to wear a coat outside when it's 30 degrees... my skin feels the coldness, but it's like my insides are a bubbling cauldron of lava, and the sweat just continues to pour down my face, non-stop.  I get cold sweats, shaking, muscles like jelly (all out of the blue), REAL panic attacks.. not just the "I got very nervous" thing, but vertigo, can't breathe, pallour, stumbling, couldn't see straight... and they just continue... now with uncontrollable crying to follow, for HOURS.  Then I go to sleep, and cannot wake up to save my life... I lost my job, and now, sometimes, I cannot wake up and function normally for days on end.
I have been hypothyroid since 10 years old, with no huge variations in my synthroid doseage for 10 or more years now, and according to my dr's have had normal results all this time.  After my life literally started going TO HELL due to anxiety, depression, GI issues, panic, etc etc, I had it rechecked, and now have a TSH of 0.04, and normal T4/T3.  

My doctor responded (to ALL these complaints in addition to the labwork) by lowering my Synthroid from 200mcg to 150mcg. I sort of get that part (the clearly HYPERthyroid thing.....) but is it not somewhat negligent to IGNORE the fact that my TSH is 0.04?   I sincerely WANT to feel at least normal, if not great, and I cannot seem to find anyone that is willing to help me!?  I've been open-minded, and seeing a therapist for months now, but he doesn't really know how to help since I seem OK one week, and falling apart the next...
11 Responses
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362809 tn?1233506554
I am not a doctor at all, so take this for what it's worth....

My daughter gets hives once every couple of years.  It starts out looking exactly like your pics before it turns into actual hives.  Just throwing that out there, though I'm sure you've considered it before.

I'm sorry you're having such bad luck with Raleigh doctors.  I actually lived in Raleigh the first time I was diagnosed with thyroid cancer and felt like I got fabulous care there.  Of course it was so long ago, the doctors I had are probably long retired.

Take care,

Amy
Papillary thyroid cancer
Near total thyroidectomy and partial central compartment dissection Dec. 1985
RAI Jan. and Oct. 1986
FNA positive for recurrence March 2008
Tumor and partial central compartment dissection April 2008
175mCi RAI August 2008
Tg before RAI was 13
Helpful - 0
550622 tn?1247656720
I had quite a few of these symptoms before being diagnosed with Hyperthyroidism.  Have been on medication for a year now.  Things are much better.  However, stress absolutely plays a roll in the "ups and downs" of the thyroid levels.  At least for me they do.  My doctor asks me about my stress level every time I go to see him.  Was going every month for lab work until recently.  He now has me going in every 2 months.  Levels are much better.  But I can definitely feel the difference when levels go up or down.  From burning up, sweating to freezing cold, skin rashes, etc.

Can make you feel a bit insane:)  But at the end of the day, they are only symptoms to the disease and very treatable.  I have a great Endocrinologist and he takes his time and listens to me.
Helpful - 0
393685 tn?1425812522
I was almost leery to look at your new pics from the way you describe them!

I did however - and I just don't know.

I still don't think you have a good approach going on with the doctors. They seem to all be stabbing at one thing or another and not looking at you as a whole person - only body parts!

Were you allergy tested?

If anything with all happening - I think - and TRUST me I only think here - the low TSH is just something that is happening because of another issue - what that is is totally unclear to me.

What all meds are you on? I certainly am not a doctor - but I know when I was cycling into the crazy world of being on 15 meds myself at one time. Certainly weird things were happening to me and was definately showing up outside the body as you are having. My whole system was out of balance and I remember sitting down last year one morning and picking apart everything that I was given for meds - my symptoms and all the diagnoises I was given and just kept trying to put together any correlations. Crohn's - IBS -Sjorgen's- Addisons - Lyme -  acid reflex - "the world reknowned ANXIETY" - depressed - Lord I don;t even remember all the speculations anymore.

I started from what I call - "The first moment in time" when I first got ill and looked at everything from then until the present - until I felt I could put something together to approach to my doctor  ( Or find a doctor that would listen!)

I suppose - since the doctors I had weren't willing to help me - I CHOOSE to take things in my own hands at that time and was willing to see if I could fix or at least - learn something on my own to fix me. I think having that approach is dangerous - but as miserable as I was - with no help - I was willing to take that as a possibility.

Once I started putting things together - that made sense to me - I went to some doctors I thought may be more open minded.  The process was slow - but for me - worth it.

You need to find someone that will look at everything - maybe an internist to start. From what I hear - they are physicians that will be more open minded and look at the whole picture and not just throw a Dx at you for each thing.

All I can offer you is support - but I know I am not much help for you here at all.
Helpful - 0
664546 tn?1225364034
P.S. (AGAIN!)
I figured, what the hell... it's not like this is a dating service or anything... I added two that show my face from last night, plus two that were taken about 9-10 months ago... you'll see how much help the doctor's have been.  (and that "eye thing" LITERALLY just comes up, out of the blue... no injury, or scratching/rubbing etc...  )  Those two older ones are actually nowhere close to the worst case pix I have somewhere on a disc...  A few times, the eye thing came up, and it looked like the skin was bloody or something, it was SO red.. and it was so swollen, I could see the skin out of the bottom of my eye.  It picks and chooses which eye, and goes back and forth... never both at the same time. Sometimes just underneath, sometimes it goes crazy and just keeps going all the way around.
Helpful - 0
664546 tn?1225364034
You will wish you hadn't asked that question...heheh
(I think it's therapeutic for me to tell this whole sordid tale though....)
I've been "passed  off" by so many doctor's, I'm starting to think I have more ex-doctor's than ex-boyfriends... maybe I should turn this into a book.
(Or send it to Michael Moore, for Sicko: Part II)

I was seeing a neurologist on a regular basis for narcolepsy (another reason I looked into lyme disease... that's a symptom) who had me on an insane dosage of CNS stimulants... (was having STRANGE issues... blistery, bleeding patches on my scalp and bald spots...  TERRIBLE rashes up my arms, chest, face and head... actual weeping, bleeding, insanely itching, large HOLES in my skin... bright red, swollen tissue all around one eye, like I had a shiner, but then it peeled off like sunburn...it was AWFUL).... Dermatologist said "contact dermatitis"... (that really WAS more like leprosy, if you ask me!! I have massive scars, that you can see in the pix... where the flaming red parts are, you can see the slightly whitish areas that are those scars.)

then a nagging pain in my abdomen (for 2 years or more) suddenly flared up, and I got really sick.. went to Urgent Care, who sent me for CT, I had a severely swollen colon, elevated white blood count, fever over 100 etc... They didn't know what to do, so they sent me over to a nearby "general surgeon's" office, who didn't really know what to do, so he then admitted me to the hospital for 3 days on IV fluids.. the GI doc in the hospital said (95% sure!) I had chron's disease, and when he eventually did all the FUN tests for chrons, UC, celiac etc, & it was all negative... he said stress, or some other sort of autoimmune problem.  

I went back to the neurologist, who did an MRI, EEG for MS, chiari malformation, maybe even lyme at that point too,  etc... all negative, so he said stress....

  I went to my PCP to ask what to do about all this "stress" (well, really for the actual inflamed colon & other physical issues I was having, that everyone suddenly seemed to have forgotten about) and she did a blood panel, that came back "normal" at that point... she acted like I was a SERIOUS hypochondriac, and said "stress".   (despite the "chicken pox" look I was sporting, and the greyish white pallour, cold sweating...)

I then lost my job due to all the time off work for all this ****....  (so yes, this "stress" illness really ended up causing me some ACTUAL stress, at this point.)

then I ended up back in the ER one night, with "incorrectly timed" HEAVY (very scary!) bleeding & massive blood clots from TWO places that should NOT have had that much blood coming out, if any at all, and the ER was kind enough to do two grotesquely embarassing tests to confirm that I DID indeed have this irregular bleeding I claimed I had, in both places, but they didn't know why, so they sent me home with a note on the check out piece of paper to go to a hematologist/oncologist. (!?!?)

I called the office they recommended, who said they needed a referral from the hospital, and they'd call me back to make the appt.... they never called me back again... EVER.  

So I went back to my PCP, and that's when I DID INDEED show a little stress... and had a MELTDOWN in the office....

she sent me to the Emergency Psych Dept, where the psych on duty said I was having stress/anxiety... who sent me to an urgent care therapist the next day, who sincerely seemed very compassionate about all my stress, and recommended exersize, yoga and relaxing hobbies etc....  

Then I moved to Raleigh... (long story on why, but related to all this, basically)

I have been  to a new neurologist, who is still treating the narcolepsy, but has added stress/anxiety to the official diagnosis- He did the blood panel showing the sudden drop in TSH, and told me to go to my regular doctor for that...  (as a matter of fact, he didn't tell me ANYTHING about the labwork.. I happened to find out that they put the results online, and upon reviewing them, noticed a TSH of .04... GOOD THING I'M A PROFESSIONAL MD, HUH!???  That was sarcastic, just fyi... I'm not!)  I called HIM to point it out, and THAT'S when he said, yes, that's definitely bad... go see your regular doctor.

I just recently went to my new pcp with the THS results... he said he would do some bloodwork, but if they didn't find anything specific, then maybe a lot of my symptoms are just being caused by stress, or I could get a second opinion (great.. just what I need)....  he "redid" the same labwork as the neurologist, and had his nurse call me to inform me that "my TSH was low".   (UH.... THANKS!?  I guess I should just be grateful that they told me)  He called in a lower dosage of synthroid to the pharmacy, and that's all I heard on that. I don't even know for sure what I'm supposed to do after taking this new lower dosage.... I assume go back in a few months, huh? (Again, I'm SO glad I'm a doctor, and know that's what I should do!?)

I've seen two psychiatrists and two different therapists who have various names for my "condition" (which now really IS stress, b/c of all these d*mn drs), but basically I was officially diagnosed with anxiety/stress....  

My face has had these actual red, itchy, open, sore-like patches on it (one of them has literally been there for about 2 years) so I've been to 3 different dermatologists within 9 months who all diagnosed these itchy patches as "dermatitis" and/or adult acne....  probably just caused by stress.....

Now you see why I have suddenly come to the realization that I just can't do any more than I have done, and I'll just have to live with my lobster ear, my burned & strangled looking neck, and the gross, itchy, crawling, spreading "acne" (I was really too embarassed to show that in the pix... my face is just gross)  

I'm 32, single, too exhausted and/or panicky to find a new job
and therefore destined to become a circus freak...  
at least until I see the endocrinologist, in FEBRUARY 2009!???  
But since I imagine he'll tell me I'm just under a lot of stress, I'm not holding my breath....

At various stages during all that mess, I have also had surgery for "rectal polyps" (gross!?), two root canals, 3 overnight sleep studies, and had my tonsils removed..... AND then lost my new job I had here in Raleigh.

BUT...  there is clearly nothing wrong with me at all but stress.....  nothing a little buddhism, yoga or walking won't fix.

I'm seriously considering taking up smoking pot or something....  I may be too old to take up drugs now, but why not!?  I'm on effexor, clonapin and alprazolam, and I'm NOT actually FEELING all this clinical, terminal 'stress' (other than annoyance with the medical profession), so I can't fix the one thing I have NOT really complained to a doctor about, that is apparently killing me!???

I just have 'stress', accompanied by a sudden onset of adult acne?
(which I didn't even have as a teenager... so that's not weird or anything)
Helpful - 0
393685 tn?1425812522
Unbelieveable pics!

To me that does not look like a rash breakout basing that in what you posted.

It looks like it is coming from within the body. It could be almost anything. Did you doctor try weening you off some meds to see if there are any counter actions going on?

I get the red chest thing all the time too - not the rest of what you are having though. What type of doctor are you seeing that is the stress freak?
Helpful - 0
314892 tn?1264623903
My Lyme tests have all been negative too. I have been diagnosed clinically at this point, before more specialized testing next week at the Lyme/chronic disease specialist.
Did you have the ELISA ot the Western Blot?
There is a Lyme forum on MedHelp as well.
I originally tried to blame all of my symptms on thyroid. Now I know I have something else going on.
I am not trying to say that you have Lyme, but the tests are notoriously inaccurate. I am a microbiologist at Quest and there are several reasons why a person may have a negative result.

I am sorry you have these symptoms. Can you post the pics on your profile?
Helpful - 0
664546 tn?1225364034
P.S.  After throwing my own, huge pity-party, I realized I should thank you (and kitty9309) for responding!   The fact that there are at least 2 people out there that care makes me feel better!!   Maybe I could just get a new job as a circus freak.... with my lobster ear and niagara-falls sweating from the face....
Helpful - 0
664546 tn?1225364034
The lyme disease test came back negative.... I thought that too.
I was on celexa for years, then went on cymbalta and had really bad side effects. (GI problems)  I've been on Effexor for a year now, clonazepam and aprazolam...  along with the synthroid, then doxycycline and bactriban for the (third) diagnosis of "acne and/or maybe dermatitis" (that ITCHES like flies crawling under my skin) , also albuterol and advair for asthma, and claritin for allergies and the "itching acne".  
  When I said about the "ovals"... it's like the middle of my cheeks go BLOOD red, (and not just like blushing, but also spotty, patchy and veiny looking) but all around is pale....   like a doll or something?   My neck literally starts to look like I have accidentally hit it with the curling iron about 20 times...  and last night, ONE ear went redder than you would ever believe... I have never seen anything like it. (I couldn't feel anything unusual though!?)  the other one was totally normal.  I took pix for my doctor, so he won't think I'm just being crazy, and they are outrageous, and actually pretty funny....  that was the only reason I even noticed my "maroon colored right ear".


I'm on so much medication, and no doctor really wants to take the responsiblity to coordinate it all...  between side effects, possible drug interactions, extremely unusual TSH out of the blue (i've been treated for hypo for 22 years now, and have been totally normal on the same synthroid dosage for over 10 years until now), allergies, "dermatitus", my apparently "terminal stress" (whether I know about it or not) and this sudden onset of irrational panic and anxiety, I realized I am going to just have to get over it.

I filled the lower synthroid rx, and got an appt with the endocrinologist... first appt available was Feb 23rd, 2009.  I went ahead and booked it,  but I'm done trying to figure this all out...  I don't have the energy to think about it any more.  I have decided to accept the fact that I may sporadically have to sleep for 24+ hours, spontaneously combust from being so hot, occasionally turn red as a lobster, have itching red sores all over my face for the rest of my life and so forth.   Other people in this world live with much worse hardships than that, and if my doctor thinks it's all normal, I can't really do much more than just let him do his job.
Helpful - 0
314892 tn?1264623903
The rash makes me think of Lyme disease. (also the vertigo)
Have you been tested for it?
Helpful - 0
393685 tn?1425812522
I don't think you doctor is ignoring your low TSH. Your meds were lowered in dosage so that does indicate he realizes you needed a change.

It sounds like you have alot of stress going on too. Losing your job and things like that.

I don't want to sound like the same type of advice you are getting from your doctors - but maybe you are a bit stressed out.  Did you try an antidepressant at least as a trial to see if that helps you.

If your looking for a similiarity with hypothyroid and these symptoms you have going on - the anxiety can be a part of it. Hypothyroid can also chemically alter a mind until it is balanced so panic can strike for sure.

Being medically hyperthyroid can bring on the hot flash and sweating -  I am not sure what you mean by the "oval " things on your cheeks. Is it a rash?
Helpful - 0
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