Discussions By Condition: Autoimmune Disease

Feeling Worse after 3yrs Levo: What is causing Hashimoto's?

Posted In: Autoimmune Disease 30 Replies
  • Posted By: Anonymous
  • March 14, 2007
  • 00:54 AM

I'm going to scream. I can't take one more light consideration of this. I feel as though I'm falling apart and I'm tired of the presumption that I'm too stupid or unreflective to distinguish between depression and physical need. I need medical help and despite many reachings out, I have not been able to connect with a doctor that views this as important. Please read on if you feel you can help.

I'm a 28 y/o female, 5'0, 150lbs. who was diagnosed with Hashimoto's Thyroiditis by both Endo and Rheumatologist. I have also recently been diagnosed with Fibromyalgia after running tests to clear Lupus and other like autoimmune diseases. I have been on levothyroxine therapy for almost three years and my symptoms have not improved. My blood work has improved only mildly. In fact, I'm feeling worse. Please read on.

Symptomatic Manifestations:
Mitral valve prolapse (slight leak), intermittent tachycardia, incredible difficulty swallowing (sometimes even saliva), intermittent diarreah and constipation, intolerance to even mild cold, severe chronic symmetrical Arthritis of metatarsal region in feet, bone pain in lower back, hips, neck, and chest, muscle pain everywhere else, chronic cystic acne for the last ten years, Headaches (which I never used to get) increased frequency and intensity, shortened and more painful menstrual cycle, severe Anxiety attacks, feeling of breathing through a straw, recently started snoring severely, feeling of a lump in my throat, waking up in the middle of the night for sugar yet craving salty and fatty foods during the day, severe chronic fatigue--feels like drunkeness, especially after eating, "brain fog" (as though too many thoughts are trying to go through at once and they all get jammed up, unable to complete a thought), difficulty speaking, stumbling over words and blending words at a higher rate than normal, unrefreshing sleep, blurry vision without diagnosable physical cause, low-normal body temp and blood pressure, high Cholesterol despite dietary restriction, continual pain in sides and lower back/abdomen, dentist reported bone loss in jaw but bone scan revealed no bone loss elsewhere, tooth mobility, waking up in the middle of the night with leg cramps so bad I can only describe them as "rigor," myoclonus in face, eyelids, fingers, legs, arms, feeling like there is something on my skin when nothing is there (not even a hair or spiderweb), forty pound of weight gain in abdominal region.

Medication:
I have been on 75mcg of Levothyroxine, 5mcg of Cytomel and 1200 units of vitamin D per day for the last six months (previously just 50mcg of Levothyroxine, prior to that Amour Thyorid, low dose).

My numbers:
Initial Diagnosis, 165 lbs.,
06/13/05: (TPOAb) 5908 H IU/ml (0-34 ref. interval), TSH 2. 189 uIU/ml (.350-5. 500 ref. interval), Total Cholesterol 233 H mg/dL (100-199 ref. interval) LDL 163 H mg/dL (0-99 ref. interval) I restrict foods high in animal fats, and had for the previous two years-- family history of high Cholesterol and other symptoms.

Most recent test, 150 lbs.
02/06/07: 2141 IU/ml (0-34 ref. interval), TSH 4. 157 uIU/mL (ref. interval .350-5. 500), (No lipid panel for comparison)

Questions:
I suspect that my problem is related either to the pituitary, or to amalgam mercury poisoning. Where do I go next? Who do I consult with? Should I be tested for Lyme's, Cushing's? What else should I be aware of?

Thank You...

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30 Replies:

  • You may want to check out Dr. John Lowe's website (he is the director of research for Fibromyalgia). His site is www.drlowe.com There is a lot of information on his site & it may take some time to read it all. He is an expert on hypothyroidism and low metabolic rates. Hope it helps
    Anonymous 42789 Replies Flag this Response
  • Thank you. I just got an e-mail from a doc who thinks this is levothyroxine resistance; Dr. Lowe's specialty.Many thanks again...
    Anonymous 42789 Replies Flag this Response
  • Also, try going on a NON-Generic brand.... I have just been moved to a non-Generic brand and feeling so much better!From what my Dr. tells me that the generic can be any company and is not monitored by the FDA so is not always the correct or same dosages... I hope this helps!!Where are you located? I know this is so frustrating it is a constant battle everyday...
    Anonymous 42789 Replies Flag this Response
  • you should get this book....FIBROMYALGIA & CHRONIC MYOFASCIAL PAIN SYNDROME...By Devin Starlanyl, MD and Mary Ellen Copeland, MS,MA. Of particular intrest is the chapter on nutrition and reactive hypoglycemia. Hokey
    Anonymous 42789 Replies Flag this Response
  • Hi, I can COMPLETELY relate to your story!!! Have been fighting same issues for 20 years. I am 39. Just found a Neuro doc that within 3 days of testing for things that NEVER get tested, found that I have a genetic mutation (MTHFR) that contributes to blood clotting disorders, heart disease, stroke, body pain, etc. Also have seizures that I never knew I had, and also just found out I have Myasthenia Gravis, heart disease, clotting disorder, encephalopathy, and ankylosing spondylosis (sp?). Please don't give up on testing and doctors until YOU feel comfortable with what you hear. I also have hypothyroidism. Feel free to contact me if you need to. ddttdewey@isp.com
    Anonymous 42789 Replies Flag this Response
  • Again, I am deeply indebted to you all for the very generous and thoughtful responses that you have posted. In the meantime, I have been diagnosed with Thryoid Resistance Syndrome, which explains, at least in part, why I can't seem to get my TSH down where it needs to be. Thanks so much for caring and I will keep you all posted.
    Anonymous 42789 Replies Flag this Response
  • I'm going to scream. I can't take one more light consideration of this. I feel as though I'm falling apart and I'm tired of the presumption that I'm too stupid or unreflective to distinguish between depression and physical need. I need medical help and despite many reachings out, I have not been able to connect with a doctor that views this as important. Please read on if you feel you can help.I'm a 28 y/o female, 5'0, 150lbs. Symptomatic Manifestations: Mitral valve prolapse (slight leak), intermittent tachycardia, incredible difficulty swallowing (sometimes even saliva), intermittent diarreah and constipation, intolerance to even mild cold, severe chronic symmetrical Arthritis of metatarsal region in feet, bone pain in lower back, hips, neck, and chest, muscle pain everywhere else, chronic cystic acne for the last ten years, Headaches (which I never used to get) increased frequency and intensity, shortened and more painful menstrual cycle, severe Anxiety attacks, feeling of breathing through a straw, recently started snoring severely, feeling of a lump in my throat, waking up in the middle of the night for sugar yet craving salty and fatty foods during the day, severe chronic fatigue--feels like drunkeness, especially after eating, "brain fog" (as though too many thoughts are trying to go through at once and they all get jammed up, unable to complete a thought), difficulty speaking, stumbling over words and blending words at a higher rate than normal, unrefreshing sleep, blurry vision without diagnosable physical cause, low-normal body temp and blood pressure, high Cholesterol despite dietary restriction, continual pain in sides and lower back/abdomen, dentist reported bone loss in jaw but bone scan revealed no bone loss elsewhere, tooth mobility, waking up in the middle of the night with leg cramps so bad I can only describe them as "rigor," myoclonus in face, eyelids, fingers, legs, arms, feeling like there is something on my skin when nothing is there (not even a hair or spiderweb), forty pound of weight gain in abdominal region.Medication: I have been on 75mcg of Levothyroxine, 5mcg of Cytomel and 1200 units of vitamin D per day for the last six months (previously just 50mcg of Levothyroxine, prior to that Amour Thyorid, low dose). My numbers: Initial Diagnosis, 165 lbs., 06/13/05: (TPOAb) 5908 H IU/ml (0-34 ref. interval), TSH 2. 189 uIU/ml (.350-5. 500 ref. interval), Total Cholesterol 233 H mg/dL (100-199 ref. interval) LDL 163 H mg/dL (0-99 ref. interval) I restrict foods high in animal fats, and had for the previous two years-- family history of high Cholesterol and other symptoms. Most recent test, 150 lbs. 02/06/07: 2141 IU/ml (0-34 ref. interval), TSH 4. 157 uIU/mL (ref. interval .350-5. 500), (No lipid panel for comparison) Questions: I suspect that my problem is related either to the pituitary, or to amalgam mercury poisoning. Where do I go next? Who do I consult with? Should I be tested for Lyme's, Cushing's? What else should I be aware of?Thank You...First off, your medication for Hashimoto's is way too low. You weigh 150 and that means you should be taking a minimum of 108 mcg. Second, make sure you're taking Synthroid and NOT the generic. The generic is NOT reliable for consistent dosing. This has been proven by Endo's treating hypoT.Read up on the correct dosing for Synthroid at:http://www.thyroidtoday.com/Look for an article by Carole Spencer under Expert Opinions. The article states a dosing of 1.6 times your weight in kg.Read up on the thyroid gland and thyroid disease at:http://www.thyroidmanager.org/Written by doctors for doctors treating patients. Make sure you have a medical dictionary open at the same time, you'll need it. :) At the last web site they describe dosing for thyroid disease should run between 1.2 to 2.4 times the body weight in kg. The dosing is based on the severity of your symptoms and disease.For instance, I am on 150 mcg right now because I am obese due to severe under treated hypoT and no treatment for 35 years. However, when I get to my ideal weight my dose will be 112 mcg.It sounds like your endo is giving you the dose you need for your ideal weight and not what you currently weigh.Many of your symptoms are those of sleep apnea as well. Sleep apnea is a symptom of hypoT and will heal on it's own unless you have something physically wrong with you. I underlined and placed in bold all your symptoms which are also symptoms of sleep apnea.BTW, do you snore? If you sleep on your back, do you suddenly awaken gasping for a breath or choking? These are signs of sleep apnea. Your food cravings are definitive signs of sleep apnea. Do you get those headaches upon awakening more often than other times? That's a symptom of low oxygen to your brain. You almost read like a text book sufferer. And sleep apnea should have been treated and disappeared IF you were treated on the correct dose of thyroid replacement.To find out about the symptoms of sleep apnea:http://www.talkaboutsleep.comAlso I put your TSH test result in bold to alert you. Are you saying your TSH went up from 2.189 to 4.157? If so this would indicate further failure of your thyroid and therefore, this verifies you're on the incorrect dose of thyroid replacement. And if so, I can see why you feel worse. You would!Hashimoto's is an inflammatory disease and it gets worse over time if not treated properly. That happened with me, so I'm speaking from first hand experience. All of your symptoms should be under control. However, since they are not, that points to several different causes.1. Under treated hypothyrodism2. Sleep disorder and/or sleep apnea3. Secondary disease I was told years ago that I had Fibro as well. Now, my newest and a very excellent endo, tells me I never had it and have probably had Hashimoto's for the past 35 years. The problem is that Hashimoto's can produce extra thyroid hormone through the nodules and therefore your TSH can go up and down. This is what throws must doctors off the track and into thinking your thyroid is functioning fine. When in fact, it is going haywire with your TSH not showing the true statis of the functioning of your thyroid gland.I would suggest finding a better endo because the one you have is doing you a disservice and did so from the moment you were diagnosed! :eek: Your thyroid replacement dose should have been, 120 mcg, and then lowered as you lost weight. And your high LDL and Cholesterol would have corrected themselves as well with the proper dosing of thyroid replacement.Another case of mismanaged Hashimoto's and it is quite common as I've been told.
    Anonymous 42789 Replies Flag this Response
  • Again, I am deeply indebted to you all for the very generous and thoughtful responses that you have posted. In the meantime, I have been diagnosed with Thryoid Resistance Syndrome, which explains, at least in part, why I can't seem to get my TSH down where it needs to be. Thanks so much for caring and I will keep you all posted.http://en.wikipedia.org/wiki/Thyroid_hormone_resistanceThis is a genetic disorder which does NOT explain your other symptoms of sleep apnea. So I still wonder if you aren't being treated with enough thyroid replacement?
    Anonymous 42789 Replies Flag this Response
  • Sounds like you have a systemic yeast problem as indicated by waking in the night with cravings, feeling like something on your skin when there isn't, headaches, anxiety, cystic acne, irritable bowel, brain fog, drunk feeling... Read up on systemic yeast symptoms online.Also sounds like gluten sensativity for irritable bowel. Takes 6-8 weeks on a gluten free diet to have your system cleansed of gluten. Stools should normalize. The only grains and starches you can have would be rice, corn and potatoes. Eat veggies and nuts mainly since you have high cholesterol and with a yeast problem you should limit fruits due to sugars. You will not die of malnutrition! However, I would say that once you get on a regimine of nystantin and off the gluten that your cholesterol will begin to come down and meats won't be a problem. If you start with a normal dose of nystantin and start having a reaction to it like diahrea and mucous, stomach upset, worst case vomiting, then it means it is working. Your body is getting rid of the yeast. Drop the dose way down to tolerable and as time goes by gradually increase it. then stay on it for a couple of years at full dose. Diflucan would be the best, but I'm concerned that you would have too massive a die off of yeast and that would be bad.After the yeast is under control then you can eat fruits and sugars again. But for a time we need to get your body working again.After going on the gluten free diet, (it's been approx. 5 months for me) my arthritis is almost gone and I was in long term therapy for costrocondritis. The pain from that is rare now. The doc also suspected fibromyalgia and I have hashimoto's and endometriosis. My cycles have begun to normalize for the first time in my life. I was not tested for celiac although they suspected it when I started spontaneously improving on the diet, but it was too late to test for it. You have to be eating gluten for the linings to inflame as an indicator of celiac. I wasn't going back to gluten. No way, when I started claiming my life back.As for the leg cramps, put some salt under your tongue. Just a pinch and the cramps should go away within a very short time.
    Anonymous 42789 Replies
    • January 11, 2008
    • 02:46 PM
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  • When living in the UK, I went to a specialist with Hashimoto's Thyroiditis. He told me that before the 1920's there was NO SUCH THING as ME or Fibromyalgia. He explained that there might be a list of 20 thryoid symptoms. 5 might indicate ME, another 5 might indicate Fibromyalgia, another 5 might indicate thyrioditis. In other words, ALL of the symptom combinations were once treated with thyroid medicine - before the inaccurate blood tests became the measuring stick. Maybe the pharmaceutical industry is making money off newer drugs for pain/symptoms rather than treating people for thyroid disorders? Anyway, this doctor treats all 3 disorders with thyroid medicine and sees excellent results.As for your meds. I was on thyroxine when I was in the UK (for 3 years) and it didn't do me enough good. That was the thyroid medication under the NHS. I couldn't get my symptoms under control on a lower dose and when I got too much thyroid medicine, I would go hyper. I am now on Synthroid and am doing better with the thyroid symtpoms. You might try changing to Synthroid and see if you get better results. A higher dose may eliminate much of your symptoms. I too get bad muscle spasms in my legs when I am under-dosed.
    Anonymous 42789 Replies
    • January 29, 2008
    • 05:31 PM
    • 0
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  • Hi, I had similar symptoms that got better after taking Synthroid. Ask your Endocronologist about it. Finding a good doctor who know what they are doing makes all the difference.Take care,Teresa
    TeresaC 41 Replies Flag this Response
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  • I also was diagnoised with Hashimoto's. Actually, I diagnosed myself. I was a Medical Laboratory Technician and new that my symptoms matched hypothyroidism, but after my TSH was tested and it always came back normal, I was dismissed. I pushed further and did my own research only to find out that the normal values are incorrect 0.3 to 3.0 and most sufferers don't feel well until their TSH is closer to 1. I managed to find an open minded Nurse Practioner to listen to me and instructed her to test for Thyroid Antibodies, which came back positive. She did not know what to do with this and sent me for a thyroid ultrasound, which came pack positive for thyroidis. I made a appointment with an Endo the next day. He prescribed 50mcg of Synthroid even though I have a TSH of 1.9. It has been 2 weeks and I am not feeling any better. I think the dosage is to low.The only problem is that before I was put on the medication - I have an increased heart rate 95-125 bpm. I am not hyperthyroid - I am hypo. I don't know why my heart rate is so high.Just want everyone to know that people with hypo symptoms and normal labs should be treated. The endocrine system is a mystery to doctors and these values may not be correct. KEEP FIGHTING FOR THE RIGHT DOCTOR THAT WILL TREAT YOU BASED ON SYMPTOMS AND NOT NUMBERS (Treat until you feel well).
    Anonymous 42789 Replies Flag this Response
  • All of your symptoms are caused by Chiari 1 Malformation.
    Anonymous 42789 Replies Flag this Response
  • Hi. I have this great link you should take a look at. Its a doc talking about the connection yeast hypersensitivity, hashimoto's and fibromyalgia. http://www.thyroid-info.com/articles/candidayeast.htm
    Angellore 13 Replies Flag this Response
  • I also was diagnoised with Hashimoto's. Actually, I diagnosed myself. I was a Medical Laboratory Technician and new that my symptoms matched hypothyroidism, but after my TSH was tested and it always came back normal, I was dismissed. I pushed further and did my own research only to find out that the normal values are incorrect 0.3 to 3.0 and most sufferers don't feel well until their TSH is closer to 1. I managed to find an open minded Nurse Practioner to listen to me and instructed her to test for Thyroid Antibodies, which came back positive. She did not know what to do with this and sent me for a thyroid ultrasound, which came pack positive for thyroidis. I made a appointment with an Endo the next day. He prescribed 50mcg of Synthroid even though I have a TSH of 1.9. It has been 2 weeks and I am not feeling any better. I think the dosage is to low.The only problem is that before I was put on the medication - I have an increased heart rate 95-125 bpm. I am not hyperthyroid - I am hypo. I don't know why my heart rate is so high.Just want everyone to know that people with hypo symptoms and normal labs should be treated. The endocrine system is a mystery to doctors and these values may not be correct. KEEP FIGHTING FOR THE RIGHT DOCTOR THAT WILL TREAT YOU BASED ON SYMPTOMS AND NOT NUMBERS (Treat until you feel well).........Tammyr;101763..MY NAME IS RENE. IN 1995 WHILE I WAS IN SCHOOL FOR CLINICAL LAB TECH AND RAISING SIX CHILDREN, I BEGAN TO EXPERIENCE EXTREME PAIN IN MY ARMS AND HANDS BUT IT DID'NT STOP THERE. I BEGAN TO FEEL EXTREMELY EXTREMELY TIRED IT SEEMED I COULD'NT GET ENOUGH SLEEP. THEN THE MUSCLE PAIN SPREAD INTO MY WHOLE BODY. SOON AFTER OTHER DISTURBING SYMPTOMS BEGAN TO TEAR MY LIFE APART. I FELT LIKE I WAS IN A DREAM OR LIKE SOMEONE HAD DRUGED ME I WAS HAVING MEMORY LAPSES AND FREQUENT MIGRAINES THAT WOULD LAST FOR 5 OR MORE DAYS IF I DID'NT GO TO THE HOSPITAL TO GET A PAIN SHOT. I WAS ALSO HAVING TROUBLE LOSING WEIGHT FOR THE FIRST TIME IN MY LIFE. I KEPT GOING TO THE DOCTOR AND GETTING TEST AFTER TEST ANDJ EVERYTHING KEPT COMING BACK WITHIN NORMAL LIMITS BUT I KNOW MY BODY AND I KNEW THERE WAS SOMTHING WRONG . I REMEMBER ONE OF MY INSTUCTORS IN SCHOOL TOLD US THAT PAIN WAS THE BODIES WAY OF TELLING YOU THAT SOMTHING IS WRONG. I WAS AT MY DOCTORS EVERY WEEK BECAUSE THE SYMPTOMS DID'NT SUBSIDE AND I WAS TRYING TO FINISH MY CLINICALS AT SMITHKLINE IN TAMPA FL. I WAS SCARED AND MY DOCTOR WAS ACTUALLY BECOMING VERY NASTY WITH ME . I DID THE SAME THING YOU DID, I BEGAN MY OWN RESEARCH AND EVENTUALLY CAME UP WITH THE SAME CONCLUSION THAT YOU DID; I HAD A THYROID PROBLEM AND I ALSO HAD THE SAME PROBLEM WITH THE THYROID FUNCTION TESTS COMING BACK WITHIN NORMAL RANGE SO WHEN I WENT BACK TO THE DOCTOR AND TOLD HIM "I THINK I HAVE A THYROID PROBLEM AND THAT I SUSPECT HASHIMOTO'S DISEASE AND ASKED HIM TO SO THE ANTIBODY TEST HE BECAME IRATE YELLING AND SCREAMING AT ME THAT SEVERAL THYRIOD FUNTION TEST WERE'NT WRONG. I TRIED TO TELL HIM THAT THE FUNTION TESTS ARE NOT AS RELIABLE AS HE THOUGHT AND THAT A VERY HIGH PERCENTAGE OF PATIENTS WITH HASHIMOTO'S DISEASE HAVE THYRIOD FUNTION TEST THAT COME BACK WITHIN NORMAL RANGE AND THAT HE NEEDED TO DO THE ANTIHUMAN THYYROID ANTIBODY TEST. APPARENTLY HIS VERY LARGE EGO COULD'NT PROCESS THE FACT THAT I HAD COME UP WITH A DIAGNOSIS THAT HE NEVER THOUGHT OF AND HE YELLED AND SCREAMED AT ME TELLILNG ME THERE WAS NOTHING WRONG WITH MY THYRIOD; REFUSED TO DO THE TEST AND TOLD ME I NEEDED PHSYCOLOGIST WHICH I SOON LEARNED WAS DOCTOR TALK FOR I DON'T KNOW WHATS WRONG AND I'M NOT TAKING ANY ADVICE FROM SOME LOWLEY LAB TECHNICIAN THAT WAS STILL IN SCHOOL. I KNOW THAT WHEN THIS ALL STARTED I DID'NT NEED A PHSYCOLOGIST BUT THE ILLNESS ITSELF WAS TAKING IT'S PHYSICAL AND EMOTIONAL TOLL AND THIS DOCTOR THAT I HAD BEEN PRACTICALLY BEGING TO HELP ME FOR THREE LONG YEARS JUST TOLD ME THAT I WAS CRAZY AND THAT THERE WAS NO PAIN IT WAS ALL IN MY HEAD,THEN HE TOLD ME THAT HE NO LONGER WANTED ME AS A PATIENT, I WAS IN TEARS. I FELT LIKE AN IDIOT NOT TO MENTION THE WHOLE OFFICE HAD HEARD EVERYTHING HE SAID AND I HAD TO FACE ALL THESE NURSES AND 20 OR SO PATIENTS TO LEAVE. THIS DOCTOR WAS SO NASTY AND COLD TOWARD ME THAT BY THE TIME I GOT TO MY CAR I WAS READY TO HAVE A NERVOUS BREAKDOWN. WELL I TRIED THE PHYSCOLOGIST THING FOR THE NEXT THREE YEARS DIAGNOSED AS BIPOLAR WITH ANXIETY DISORDER AND LET ME TELL YOU THE ANTIDEPRESSANTS AND ANTIANXIETY DID'NT HELP THEY WER'NT LISTENING TO ME, THEY KEPT TELLING ME THAT I WAS PHYSICALLY ILL BECAUSE I WAS DEPRESSED AND STRESSED. I TOLD THEM THAT THEY HAD IT BACKWARDS, I DEPRESSED BECAUSE I WAS PHYSICALLY ILL AND STRESSED BECAUSE I WAS SO SICK AND IN SO MUCH PAIN AND HAD LOST ALL HOPE OF GETTING BETTER BECAUSE DOCTOR AFTER DOCTOR AFTER DOCTOR WERE'NT LISTENING; IT HAD BEEN FIVE YEARS NOW. MY FAMILY AND I MOVED BACK TO PHILADELPHIA IN 1999 AND THOUGH I MANAGED TO FINISH MY SCHOOLING I WAS TO SICK TO WORK. I FINALLY DID FIND A DOCTOR THAT WAS WILLING TO LISTEN TO ME AND AGREED TO DO THE ANTIBODY TEST AND GUESS WHAT, I WAS RIGHT, FINALLY I WAS VINDICATED BUT THE PHYSICAL DAMAGE TO MY BODY FROM LACK OF PROPER TREATMENT AND MEDICATION HAD ALREADY BEEN DONE AND I ENDED UP HAVING A HYSTERECTOMY BECAUSE OF AN EXTREMELY ADVANCED EXTREMELY DAMAGING CASE OF MYOENDOMETREOSIS ALONG WITH MANY FYBRIOD TUMORS ON MY OVARIES. THERE WAS ALSO DAMAGE TO MY BRAIN IN THE FORM OF SEVERAL AREAS OF WHITE MATTER LESIONS WHICH CONTINUE TO GROW IN NUMBER OVER THE YEARS AND I MUST BE TESTED EVERY YEAR FOR MS ,OTHER THAN THAT THEY ACT LIKE IT'S NO BIG DEAL BUT MY SHORT TERM MEMORY IS VERY BAD AND I CONTINUE TO FEEL STRANGE AND CAN'T CONCENTRATE ON ANYTHING FOR VERY LONG. I CAN NO LONGER DO THE JOB I LOVED SO MUCH AND WORKED SO HARD FOR . I HAVE BEEN ON LEVOTHYROXINE SINCE 2001 AND CONTINUE TO TAKE EVER INCREASING DOSAGES; IM UP TO 15OMCG BUT IT NO LONGER HELPS AT ALL. I'VE LOST EVERYYHING, MY HOME,MYHUSBAND, MY CHILDREN, MY CAREER ,MY CONFIDENCE,PRIDE AND SELF RESPECT. I NOW LIVE WITH THE ONE CHILD THE STATE COULD'NT TAKE BECAUSE HE WAS OF AGE TO CHOSE. I NOW TRY TO MAINTAIN A ROOF OVER OUR HEADS AND FOOD ON THE TABLE NOT TO MENTION ALL THE THINGS A HOME NEEDS ON $ 1400 PER MONTH OF DISABILITY INCOME. THE STATE WILL NOT HELP WITH FOODSTAMPS BECAUSE THEY SAY I GET TO MUCH MONEY. THEY DON'T HELP WITH RENT BECAUSE THEY SAID I SHOULD BE IN SUBSIDISED HOUSING BECAUSE OF MY DISABILITY BUT THERE ISN'T ANY SECTION 8 ,THEY HAVE A 5 YEAR WAITING LIST. THE SUBSIDSED HOUSING HAS A 2-5YR WAITING LIST AND I'M OUT TIME, IT WON'T BE TO LONG BEFORE I'M IN MY FOURTH HOMELESS SHELTER OR LIVING IN MY CAR AGAIN. SINCE MY HUSBAND LEFT THE KIDS AND I ,WE'VE BEEN MOVING ALOT AND I'M BACK TO DEALING WITH DOCTORS THAT DON'T THINK THAT MY MANY HEALTH PROBLEMS ARE DUE TO THE HASHIMOTOS DISEASE. IT'S FUNNY I'VE DONE SO MUCH RESEARCH ON THIS DISEASE, THE SYMPTOMS AND EVEN FOUND THAT THOUGH ANY NATIONALITY CAN GET HASHIMOTOS IT IS MOST COMMON AMONG ASIAN AND NATIVE AMERICAN POPULATION WHICH MAKES EVEN MORE SENSE BECAUSE ALTHOUGH I AM BLONDE WITH BLUE EYES MY GREAT GRANDMOTHER WAS FULLBLOODED SIOUX INDIAN, BLACKFOOT TRIBE. SO I'VE BEEN SUFFERING FOR 13 OR 14 YRS. I HAVE BEEN TAKING THE MEDS SINCE 2001`AND WITHIN THE PAST 3 YRS. I HAVE STEADLY GOTTON WORSE AND HAVE LOST ALL HOPE THAT I'LL EVER GET BETTER BECAUSE THE DOCTORS DON'T LISTEN AND VERY FEW CARE. THERE WAS ONE DOCTOR LAST THAT I PUT TOGETHER TEN PAGES OF REASEARCH ALL ABOUT HASHIMOTO'S IT WAS VERY IMFORMATIVE AND WELL RESEARCHED . I GAVE IT TO HIM AT ONE OF MY APPT., YOU KNOW SO HE WOULD KNOW THAT THE PROBLEMS I WAS HAVING WERE NOT SEPERATE BUT ALL CONNECTED TO A COMPRAMISED ENDOCRINE SYSTEM . IT WAS NICE AND NEAT AND BOUND IN A FOLDER AND ALL OF IT MADE SUCH PERFECT SENSE IT IS SO OBVIOUS THAT EVERYTHING WAS CONNECTED. I WAS RELIEVED BECAUSE ALL THESE DOCTORS HAD BEEN TELLING ME THAT THE HASHIMOTOS WAS'NT CAUSING MY MANY HEALTH PROBLEMS AND I KNEW THEY JUST DID'NT KNOW MUCH OR THEY DID'NT CARE TO KNOW. SO I HANDED HIM THE REASEARCH AND HE ASKED. "WHAT'S THIS?" I REPLIED IT'S EVERYTHING YOU NEED TO KNOW ABOUT MY DISEASE AND DO YOU KNOW HE THREW IT BACK AT ME AND SAID THAT HE DID'NT HAVE TIME TO READ THIS INTERNET NONSENSE.HOWS THAT FOR THE KIND OF DOCTORS I'VE BEEN DEALING WITH AND THIS IS WHY I'M GETTING WORSE FASTER AND KNOWONE WILL GO THAT EXTRA MILE TO HELP ME I'M IN PAIN EVERYWHERE AND PHYSICAL ACTIVITY JUST MAKES IT WORSE. AS FAR AS MY EMOTIONAL WELLBEING. WELL LET'S JUSTS SAY THAT I'VE LOST THE ONLY THING I HAD LEFT TO KEEP ME GOING , HOPE, ALL MY HOPE HAS TURNED INTO HOPELESSNESS THAT ALL THE ANTIDEPRESSANTS IN THE WORLD CAN'T FIX AND THE DOCTORS THAT YOU PUT YOUR FAITH AND TRUST IN TO FIX YOU JUST DON'T CARE ABOUT ANYTHING BUT THE BOTTOM LINE; HOW MANY PATIENTS THEY CAN CRAM INTO AN HOUR. IT'S NOT ABOUT HELPING PEOPLE ANYMORE, IT'S ABOUT FOOLING PEOPLE INTO THINKING THEY'VE HELPED YOU BUT REALLY NOW DAYS THE PATIENT HAS TO RESEARCH FOR THEMSELVES BECAUSE THE DOCTORS DON'T. I'M RAMBLING NOW SO I'M GOING TO END THIS VERY LONG BUT JUSTIFIED AND TRUE COMPLAINT. TRY TO HANG IN THERE, I HOPE YOU HAVE A SUPPORTIVE, LOVING FAMILY BECAUSE IT MAKES A BIG DIFFERENCE.
    Anonymous 42789 Replies Flag this Response
  • Hi,I rarely respond to posts, but I felt strongly to do so because you are describing the rsimilar heart rate problem i had before I figured out the other clue to my Hashimoto's Problem which I chased trying to solve for 5 years on and off levo without success until... I found I have Schmidt's Syndrome which took docs 5 years to figure out after I was diagnosed with Hashi's, my heart rate was high all the time between 95-132 even off medication, and it only got worse on Levothyroxine, that is a STRONG sign of Adrenal Insufficiency a.k.a Addison's Disease. Schmidt's Syndrome is Hashimoto's Disease and Addison's Disease put together. I just got diagnosed with Addison's 5 months ago and I am feeling the best i have in 20 years! I only take Adrenal medication at the moment and nothing for my thyroid. If you have an undiagnosed Adrenal PROBLEM and your doc misses it, and initiates thyroid treatment, the levo will make the thyroid problem worse and the adrenal problem worse. Your heart will get thrashed around, also, with Adrenal Insuffiency you would have Orthostatic Hypotension where you get dizzy when you stand up and maybe faint. We are talking about high pulse and low blood pressure that is the red flag!!! I got tagged with Bipolar Disorder, then that was thrown out and then I was diagnosed Panic Disorder for pursing answers until finally I got all new doctors and they this was a terrible mistake and I was in fact sick with something moderately serious, Addison's, but easily treated with medication. Read Synthroid's prescribing information on their website, it warns against Adrenal Insufficiency. Now I see a Cardiologist and an Endocrinologist, oh ya and maybe a Nuerologist! Good luck! I hope this helps!
    hashigirl11 6 Replies Flag this Response
  • Interesting to stumble upon this thread while searching for something completely unrelated (at least I thought it was unrelated, but now I'll have to reconsider that). Anyway, if the original poster (and others who have posted, too) is monitoring this thread, I'm curious to know how you're doing now and hope you'll post again to let us know!I have Hashimoto's thyroiditis, too, but it took over 2 years from a rapid debilitating onset of severe symptoms, countless tests that were "relatively" normal, one doctor after another (most, if not all, leaving me with the impression or even outright telling me "it was all in my head") for someone to even suspect and test for a thyroid problem! The hope of getting better was almost gone, and I was actually beginning to believe they were right -- I wasn't sick, just crazy. Frankly, I'm lucky to still be alive as I had the gun to my head countless times during that period of time -- not just because of the worsening cognitive function, debilitating pain and fatigue I experience nearly every day, but from the added insult the doctors chose to pile on as well. What a sad commentary on our "best in the world" medical system!So, although I was diagnosed with Hashimoto's thyroiditis, that didn't explain my array of symptoms -- despite the elevated TPO antibodies, I was (and 5 years later still am) euthyroid. It did, however, lead the diagnosing endocrinologist to do more digging and discover a diagnosis that DID make sense (WOW, a caring doctor who actually reached beyond her existing knowledge base to find an answer for her patient instead of just assuming her patient must be crazy... I finally got lucky and found a decent doctor, but she was forced to close her practice not more than 6 weeks after I became a patient, ***n it all!). What she discovered, though, is a rare condition called Hashimoto's encephalopathy. This is a form of autoimmune encephalopathy that, although they're pretty sure isn't caused by the thyroid antibodies, affects a small minority of people that also have Hashimoto's thyroiditis.To those reading this thread, go to PubMed or even Google and do a search for Hashimoto's encephalopathy (another name for this condition is SREAT -- steroid responsive encephalopathy associated with autoimmune thyroiditis). This little-known condition may be the answer. Finding a doctor who will diagnose and treat it could be a challenge, but it's worth investigating if you have cognitive decline, extreme fatigue, headaches, neurological symptoms like gait disturbance, vertigo and balance problems, neuropathy, and a host of other symptoms that are uncharacteristic or too severe to be explained by the thyroiditis or any other "known" diagnosis.So please, do whatever you must to get a diagnosis and aggressive treatment as soon as possible if HE (Hashimoto's encephalopathy) fits your situation!!! This disease attacks the brain, and the longer it is left untreated, the worse your chances of complete or near-complete recovery. At not even 50 years old, I still hold hope there is a new treatment coming that will improve my function, but for now I am unable to work and barely able to manage just the basics of daily living because diagnosis and treatment was too long delayed... don't let it happen to you!
    Anonymous 42789 Replies
    • September 15, 2009
    • 09:24 AM
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  • get tested for sleep apnea, I had similar symtoms. It took me several months to slowly get back to normal.
    Anonymous 42789 Replies
    • December 17, 2009
    • 01:20 AM
    • 0
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  • I am so sorry that happened to you, I also wondered if I had HE for a while and i was misdiagnosed repeatedly despite my ongoing Hashi's diagnosis, it turned out i had Addison's Disease, but i thought about giving up many times from the severe pain with no resolve and further insults by doctors who told me it was in my head. Today, 5 years later since my journey began, I have gone on to be misdiagnosed with Bipolar Disorder and PANIC DISORDER and have them thrown out, and now I've had 3 strokes from Lupus, got diagnosed with Fibro and Addison's and I do have Graves Antibodies. The thing that saved my life was the Addison's medication. I did get way worse with the Synthroid stuff cause my adrenal problem was missed. HE is so misunderstood and there are probably a lot more cases than anybody realizes of HE, that's a Nuero-Endocrine Autoimmune Disorder, how are you now? I am better with the Addison's medication, but life still isn't easy, it's a little traumatic after suffering for so long scared and being written off as crazy. I noticed when the doctors can't find anything wrong, you friends and family tend to start to think you are a hypochondriac, and that hurts when you are suffering in a life-threatening way. The prescribing information on Synthroid warns not to give it to someone with undiagnosed or untreated Adrenal Insufficiency, or you will get really really sick, I lived and did it, it was a nightmare. I figured it out before my doctors just by reading the prescribing information on Synthroid. Are you a thinner Hashi's, do you get heart palpitations and get dizzy, constipation, peeing too much, abdominal pain?????? High heart would definitely be indicator of Addison's, my heart rate was running between 95-135 and I was dropping and fainting, Acne is also indicator of Adrenal Insuffiency, you will get Adult Acne if and when your cortisol levels drop too low (Cortisol is made by the adrenal glands if you get Adult Acne). If your heart rate is high, go to a Cardiologist and ask to be checked for Othrostatic Hypotension, a symptom of Addison's, it's a very difficult diagnosis to make. Giving someone Synthroid with an untreated Adrenal Problem WILL make the thyroid problem worse and the adrenal problem worse. I pulled away the thyroid medication completely and then started the Adrenal Medication, this is a serious condition.:cool:Interesting to stumble upon this thread while searching for something completely unrelated (at least I thought it was unrelated, but now I'll have to reconsider that). Anyway, if the original poster (and others who have posted, too) is monitoring this thread, I'm curious to know how you're doing now and hope you'll post again to let us know! I have Hashimoto's thyroiditis, too, but it took over 2 years from a rapid debilitating onset of severe symptoms, countless tests that were "relatively" normal, one doctor after another (most, if not all, leaving me with the impression or even outright telling me "it was all in my head") for someone to even suspect and test for a thyroid problem! The hope of getting better was almost gone, and I was actually beginning to believe they were right -- I wasn't sick, just crazy. Frankly, I'm lucky to still be alive as I had the gun to my head countless times during that period of time -- not just because of the worsening cognitive function, debilitating pain and fatigue I experience nearly every day, but from the added insult the doctors chose to pile on as well. What a sad commentary on our "best in the world" medical system! So, although I was diagnosed with Hashimoto's thyroiditis, that didn't explain my array of symptoms -- despite the elevated TPO antibodies, I was (and 5 years later still am) euthyroid. It did, however, lead the diagnosing endocrinologist to do more digging and discover a diagnosis that DID make sense (WOW, a caring doctor who actually reached beyond her existing knowledge base to find an answer for her patient instead of just assuming her patient must be crazy... I finally got lucky and found a decent doctor, but she was forced to close her practice not more than 6 weeks after I became a patient, ***n it all!). What she discovered, though, is a rare condition called Hashimoto's encephalopathy. This is a form of autoimmune encephalopathy that, although they're pretty sure isn't caused by the thyroid antibodies, affects a small minority of people that also have Hashimoto's thyroiditis. To those reading this thread, go to PubMed or even Google and do a search for Hashimoto's encephalopathy (another name for this condition is SREAT -- steroid responsive encephalopathy associated with autoimmune thyroiditis). This little-known condition may be the answer. Finding a doctor who will diagnose and treat it could be a challenge, but it's worth investigating if you have cognitive decline, extreme fatigue, headaches, neurological symptoms like gait disturbance, vertigo and balance problems, neuropathy, and a host of other symptoms that are uncharacteristic or too severe to be explained by the thyroiditis or any other "known" diagnosis. So please, do whatever you must to get a diagnosis and aggressive treatment as soon as possible if HE (Hashimoto's encephalopathy) fits your situation!!! This disease attacks the brain, and the longer it is left untreated, the worse your chances of complete or near-complete recovery. At not even 50 years old, I still hold hope there is a new treatment coming that will improve my function, but for now I am unable to work and barely able to manage just the basics of daily living because diagnosis and treatment was too long delayed... don't let it happen to you!
    hashigirl11 6 Replies
    • December 18, 2009
    • 00:56 AM
    • 0
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  • For the snoring, get tested for Sleep Apnea and Also get tested Addison's, aldosterone test and cortisol tests specifically. Sounds like me, I have Addison's and I snore from from Sleep Apnea which both can be dangerous without treatment in the longterm. The Cystic Acne indicates your Cortisol levels are going low, get tested for Addison's/Or Adrenal Insufficiency and Sleep Apnea, I DO HAVE BOTH OF THOSE and it was a two fold problem, my TPO's were like 2,040 and I am Eurthyroid. Do you crave Salt, black Liquorce, Pickles, or Lemonade? (that may indicate Adrenal Problems). And yes, I had all your symptoms, including the periods that are painful, bowel problems, I crave sugar too and salt, I had 3 Endo's miss my adrenal problem despite testing, I actually got diagnosed with Addison's by a Cardiologist and placed on Florinef on an emergency basis without testing and it worked! Good luck to you! I'm going to scream. I can't take one more light consideration of this. I feel as though I'm falling apart and I'm tired of the presumption that I'm too stupid or unreflective to distinguish between depression and physical need. I need medical help and despite many reachings out, I have not been able to connect with a doctor that views this as important. Please read on if you feel you can help. I'm a 28 y/o female, 5'0, 150lbs. who was diagnosed with Hashimoto's Thyroiditis by both Endo and Rheumatologist. I have also recently been diagnosed with Fibromyalgia after running tests to clear Lupus and other like autoimmune diseases. I have been on levothyroxine therapy for almost three years and my symptoms have not improved. My blood work has improved only mildly. In fact, I'm feeling worse. Please read on. Symptomatic Manifestations: Mitral valve prolapse (slight leak), intermittent tachycardia, incredible difficulty swallowing (sometimes even saliva), intermittent diarreah and constipation, intolerance to even mild cold, severe chronic symmetrical Arthritis of metatarsal region in feet, bone pain in lower back, hips, neck, and chest, muscle pain everywhere else, chronic cystic acne for the last ten years, Headaches (which I never used to get) increased frequency and intensity, shortened and more painful menstrual cycle, severe Anxiety attacks, feeling of breathing through a straw, recently started snoring severely, feeling of a lump in my throat, waking up in the middle of the night for sugar yet craving salty and fatty foods during the day, severe chronic fatigue--feels like drunkeness, especially after eating, "brain fog" (as though too many thoughts are trying to go through at once and they all get jammed up, unable to complete a thought), difficulty speaking, stumbling over words and blending words at a higher rate than normal, unrefreshing sleep, blurry vision without diagnosable physical cause, low-normal body temp and blood pressure, high Cholesterol despite dietary restriction, continual pain in sides and lower back/abdomen, dentist reported bone loss in jaw but bone scan revealed no bone loss elsewhere, tooth mobility, waking up in the middle of the night with leg cramps so bad I can only describe them as "rigor," myoclonus in face, eyelids, fingers, legs, arms, feeling like there is something on my skin when nothing is there (not even a hair or spiderweb), forty pound of weight gain in abdominal region. Medication: I have been on 75mcg of Levothyroxine, 5mcg of Cytomel and 1200 units of vitamin D per day for the last six months (previously just 50mcg of Levothyroxine, prior to that Amour Thyorid, low dose). My numbers: Initial Diagnosis, 165 lbs., 06/13/05: (TPOAb) 5908 H IU/ml (0-34 ref. interval), TSH 2. 189 uIU/ml (.350-5. 500 ref. interval), Total Cholesterol 233 H mg/dL (100-199 ref. interval) LDL 163 H mg/dL (0-99 ref. interval) I restrict foods high in animal fats, and had for the previous two years-- family history of high Cholesterol and other symptoms. Most recent test, 150 lbs. 02/06/07: 2141 IU/ml (0-34 ref. interval), TSH 4. 157 uIU/mL (ref. interval .350-5. 500), (No lipid panel for comparison) Questions: I suspect that my problem is related either to the pituitary, or to amalgam mercury poisoning. Where do I go next? Who do I consult with? Should I be tested for Lyme's, Cushing's? What else should I be aware of? Thank You...
    hashigirl11 6 Replies
    • December 21, 2009
    • 05:56 PM
    • 0
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