Hashimoto's Toxicosis and going hypo and hyper

[terri thyroid]

This is kind of a survey/question to those of you diagnosed hypothyroid Hashimotos but who feel or actually are cycling into a hyper (not hypo) state. Do you seem to have symptoms of hyper like red in the face, hi b.p., shakiness, depression, hot all the time not hot flashes, hot tempered, double vision or poor vision etc etc but yet you feel run down, tired, fuzzy mentally, slow gastro processes so you go to the doctor and he/she says you are right in target range for tsh below 3.0 or thereabouts and great free t4 free t3 levels and all else looks good so maybe they raise your thyroid med dose thinking you're still a little hypo (not hyper) or have you lower dose in case you are actually hyper and for a short while you feel better or feel worse right away so now you don't know if you're up or down ? Yes, that is a run on sentence but hopefully I'm clear - here is my theory - maybe you have gone so hyper your body is shutting down or slowing down to protect itself or it's just breaking  down altogether - Has anyone had this experience and if so what do you do about it or what does your doctor do or say to help you? And if our thyroid gland worked normally would pituitary and other supporting systems output consistently same amounts ? I know this is a good question for Dr. Lupo as he actually believes there is a phenomena as Hashitoxicosis unlike my past 3 endos. I'm curious what you folks think about this and what your experiences have been.

[jill866]

Your life will never be the same once you get this disease.  I had every medical problem in the book.  The toughest part is that it seems to mess with your emotional well being.  I have never felt the same as my pre-thyroid days.  I have high BP, all kinds of immune system problems, advance sinus disease, etc.

It is just one thing after another.  

I was diagnosed with Graves dieases/enlarged thyroid gland and then the it burned itself out after a year and went hypo.  It was unbalanced for the first five years and then it settled down.  It seems that I have never returned to my previous emotional state.

[ElizabethInDallas]

I agree with CourageToHeal.  My thyroid nightmare started as preeclampsia back when I was pregnant 11 years ago.  I bloated up like a tick, got jaundiced, looked and felt like poo.  

fast forward 8 years.   Systemic poison ivy necessitates Prednisone treatment for 3 months.  Extreme reaction prompts dermatologist to take me off prednisone COLD TURKEY.    End up in Emergency Room for Cushing's Syndrome caused by Prednisone.  

Fast forward another year.  I end up in ICU for edema so extreme that my lungs fart, my heart is enlarged, and abdomen is very distended.  Idiot doctor diagnoses Congestive Heart Failure (falsely) and suggests a lap band because my "60 pound weight gain over 2-1/2 months must be to over-gorging" myself. Heart pounding out of chest.  Out of breath.  Vertigo, night sweats, flush when voiding, narcolepsy, chills, cold extremeties, rash (for 11 years now) on arms that comes and goes, periodic hair loss, blurred vision, headaches and ringing in my ears.  Doctor suggests I must be bipolar or depressed. (DEPRESSED????   Ya THINK?!?!?!)  His solution to the edema is to put me on Torsemide and Furosemide to keep water at non-dangerous levels and fails to warn me that they FRY your kidneys.

Fast forward 1 year.  Get second opinion on Congestive Heart Failure at Heart First.  No CHF anywhere.  Enlarged right ventricle from edema, but no plaque, no congestive anything... great circulation from head to toe.   PreHypertensive.

Fast forward 2 years.  Ob/gyn takes one look at me and says that although my TSH and T4 look 'a bit low, but nothing significant' puts me on 20 mcg of synthroid.  Over half my symptoms (but not the edema) get much better.

Fast forward to 4 months ago.  Ob/gyn says she's going to triple my synthroid because it isn't working as well anymore, and she's "operating on a hunch".  


Fast forward to two weeks ago.  Doctor who claims the swollen lymph nodes I'm concerned about (because 90% of the time they mean cancer) are nothing more than an enlarged thyroid.  Orders cat scan and sonogram to prove to me I'm being hysterical.  

Fast forward to today.  Cat scan and sonograms both suggest prior surgical removal of thyroid... because left side is MISSING and right side is "remnant, probably missed in removal surgery".  Thing is, I had no reason to have my thyroid removed because everyone insisted my thyroid levels were normal the whole time. Cat scan also reveals cloudy liver, "probably fatty deposits".  Suggests biopsy to make sure.

Fast forward to this coming Monday.  Having entire abdomen lined with mesh to repair 6 hernias caused by abdominal distension, having gall bladder removed (large stone) which because of mesh, later removal would prove 'most problematic', and liver biopsy.  Two weeks from now, going to rheumatologist and oncologist to rule out other scary things.  But the writing is on the wall:  My doctor is an idiot, probably failed high school anatomy, and completely missed Hashi's toxicosis and myxedema.  Ob/gyn probably saved my life.

In any event, enlarged lymph nodes are probably from Hashi's.  God knows it's pretty much run its course (because there's nothing left of it), and I'm lucky to be alive.  

The symptoms that started with my pregnancy (preeclampsia) never completely went away.  They just waxed and waned.  I am convinced that since liver deposits/damage are caused by preeclampsia, and because preeclampsia is also an autoimmune response as is Hashimoto's, there MUST be a connection.

[terri thyroid]

Hi - not all of us with Hashimoto's go hypo/hyper but some do and doctors don't always believe us because they will say your lab values are perfect or you're still hypo (but we feel hyper). A good doctor will listen to how you feel not your lab values. I tend to stay a little more hypo (with my doctor's okay) because hyper makes my heart hurt and I'm too out of breath. Talk to your doctor - if he/she is listening then your doctor should find a happy medium with you to feel better. By the way, I was tested for Graves too and it was negative for the antibodies - some of us just react this way and there are numerous theories why. It may take some months to find an amount that works for you with your doctors help. Hope it all works out for you!

[allyc27]

Just wanted to ask is it likely to switch between hypo and hyper for the rest of ones life?? I couldnt bear that! Im more hyper but tests show hypo. I feel like there is so much strain on my heart. Does any1 else feel that?

Have to say I feel so comforted and normal reading these threads.

Thanku every1

[Happiness789]

In my experience, taking the thyroid meds can lower your magnesium.  Taking vitamin D also lowers magnesium.  So often doctors only test for D, then you are already low on magnesium AND taking d which lowers it further.  Get your Magnesium RBC checked - NOT just the regular magnesium, insist on the RBC test.

Good luck.

And PS - I have hashimotos and was in the ER with .03 TSH a few weeks ago.  I was going into thyroid storm.  Everyone is different so PLEASE don't try to make your hashimotos close to zero if it isn't right for YOUR body.  If it is GREAT.  If not, be careful. It could kill you.

[KatT333]

Have you read about parathyroids? They are not related to thyroids, except to be neighbors. Check out the site: www.parathyroid.com, also B12 neuropathy. B12 is often cucurrent with hypothyroidism, but doesn't look like a cause and effect, but still researching this.
KatT333