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...

Reply Flag this Discussion

30 Replies:

  • Hi, I keep trying to reply to you, I have Hashimoto's Thyroiditis. Sounds Adrenal to me since I have Adrenal Disease...I have Addison's & Hashimoto's which equals Schmitt's Syndrome together, otherwise known as PGA Type II, it's a rare syndrome that involves the adrenal glands and thyroid glands. Most likely Addison's or Cushings. The salt cravings are KEY to your getting your diagnosis. You are most likely craving salt like me cause it's makes you feel good CAUSE it raises your blood pressure and wakes you up, if you are fainting upon standing, then it's time to prove it yourself to a good Internal Medicine Doctor, Cardiologist, or even an OBGYN (real good one), I have a menstrual problems too. Uncontrolled Thyroid and Adrenal problems can cause many problems in the OBGYN area, so a good OBGYN might take a look at it for you and may know more than your ENDO! That is what i did and I got diagnosed with Adrenal Insufficiency. You need to get a blood pressure machine to check for Orthostatic Hypotension. When you start to feel tired or if you faint, take your blood pressure, then when you can , stand up and take it again. Hands still and feet flat and don't move when you do it. You are looking for a rise in Heart Rate upon Standing and a Drop in Blood pressure from sitting to standing UP. Your doctor may miss it in the office like mine did, so he gave a machine to take home and I CAUGHT IT, orthostatic hypotentsion, part of Addison's Disease. That is how i got diagnosed and proved it. Vitals. I had all your symptoms and I really suffered until I proved I had Addison's which was very difficult, but don't give up....you can't. I had Severe Headaches, Diarrhea, crave sugar and salt, constipation, snoring (Sleep Apnea, that is separate and should be FIXED too). I too have a Rhuemy and Endo who together and I got misdiagnosed with Fibro cause they missed the Addison's. I had all the pain and problems you are describing, severe fatigue, low body temp, Arthritis of metatarsal region in feet, bone pain in lower back, hips, neck, and chest, I use to stumble and slur and couldn't hold my balance, tachycharia, i thought i was having panic/anxiety attacks for 10 years and I suffered severely from that. Turned out, I had a REAL MEDICAL problem, I take Fludrocortisone, no more panic attacks, tachychardia, hypotension, dizziness, fatigue, less headaches, no more arthritis in my feet and hands, no more constipation or diarheaa, i can hold my balance pefectly now, best of all, no side efffects. If you have what I have, you can get better, Addison's is treatable and the medications work. YOU WILL HAVE TO FIGHT FOR YOURSELF HERE. PLEASE GET a test for ALDOSTERONE & CORTISOL. And also, the snoring sounds like a separate problem I also have, Sleep Apnea, it will catch with you and do damage later if you have it, get checked for that secondly BUT i am emphasing Adrenals Issues here. Do you crave Lemonade? Salt? Are you hypoglycemia too????;) 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
    • 10:03 PM
    • 0
    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. 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...I had surgery to remove my thyroid and take thyroid supplements.
    Anonymous 42789 Replies Flag this Response
  • Wow, that's a whole lot of symptoms. I think it's important to keep looking for the right doctor. Have you tested your vitamin D levels? Muscle tension can be a symptom of low vitamin D levels... see vitamindcouncil.org for more info.
    Anonymous 42789 Replies Flag this Response
  • I had most every (and still sometimes do) symptom that you have. Celiac disease runs in my family, so I got on a gluten-free diet and this helped a lot of the symptoms you described. I also have infertility issues, including endometriosis. My heart still raced, though, along with the feeling you have in your arms. I still struggled with infertility, so I took every blood test my OBGYN suggested. I have two mutations of MTHFR; now, I'm on baby aspirin twice/day and a high dosage (4mg) of folic acid. And, I take B6 and B12 vitamins, and everything is much improved! My mom also has two mutations, and has Hashimoto's. She was diagnosed with Hash before the MTHFR, and her thyroid dr, after finding this out, feels a lack of folic acid lead to the Hash. Hope this helps...it's difficult and scary to try the gluten-free diet, but it gets easier and eventually is second nature! Good luck!
    Anonymous 42789 Replies Flag this Response
  • Hi, I know your post is fairly old and now it's 2010. I was wondering if you found an answers to your symptoms cause my symptoms are par with yours.
    turkoporto 1 Replies
    • August 12, 2010
    • 00:14 AM
    • 0
    Flag this Response
  • Hi. I also have Hashimoto's (still undiagnosed, hopefully will be diagnosed with labs done today, but I have all of my symptoms pointing, no, "screaming" that I have Hashimoto's) and have been on Synthroid and getting worse, and just today I finally went to a doctor who I believe will help. (This is doctor #10 I have gone to and asked for help for hypothyroid (and specifically Hashimoto's symptoms in the past five years) I found an awesome website www.stopthethyroidmadness.com and I ordered the book, Stop the Thyroid Madness through the website. That has been the best resource I have found in five years of seraching for help. I found this new doctor through advice from the website/book. At my appointment today, the doctor agreed with everything this book had to say about exactly what tests I need (the book even tells you how to interpret the tests), what my symptoms are pointing to (Hashi's), and that my severe gluten intollerance and goiter (feeling of lump in throat) are obvious manifestations of Hashi's. I searched for a doctor who would provide bio-idential desiccated thyroid hormones. You can use the internet to search for "bio-identical hormone doctor" in your area to find an MD who will prescribe natural, bio-identical hormones. Virtually ALL of your symptoms look like hypothyroid symptoms to me. Please read Stop the Thyroid Madness. It will help you. I am certain. I feel like it is saving my life.
    Anonymous 42789 Replies Flag this Response
  • Dear Watch the Weather Change 22, I realize how long ago your post was made, but I hope you still monitor this site.I have a question instead of an answer for you.You stated in your post that one of your symptomatic manifestations was severe cystic acne. My question to you is;"Were you ever prescribed the acne medication ACCUTANE,or it is sometimes referred to as ROACCUTANE ?"If you were, for even the shortest cycle they prescribe,PLEASE answer back if you see this post.As a person still dealing w/ the long-term after effects of this drug I might be able to provide some info.I think you will be shocked at how many symptoms we have in common.Doesn't mean we share the same diagnoses;but maybe I can be of some help. All the Best to You, lmchotrod.66
    lmchotrod.66 1 Replies Flag this Response
  • I do know this was a very interesting post thanks for writing it!
    peleperezxx 86 Replies Flag this Response
  • Great article. Will definitely copy it to my blog.Thanks
    peleperezxx 86 Replies Flag this Response
  • Great info dude!
    peleperezxx 86 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.