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| Rare diseases Any disease affecting less than 200,000 Americans |
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#1
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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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#2
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TSH is still too high. It should be around 1.0 with Hashimoto's in order to not have symptoms, at least from what I've read.
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#3
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I am a Fibromyalgia pateint with an extensive history that is somewhat similar to yours. In a recent blood screening they found abnormal amounts of Mercury in my blood. The doctor was as surprised as I was but she had seen similar problems. She explained it was a bit of a catch 22. I had accumulated Mercury and it was flat out screwing up my body on numerous levels (immune response, adrenals, cognitive thinking), OR I had an underlying infection that had reduced my immune systems ability to eliminate it. But there was no real way to say which was the cause (chicken or the egg type of thing). I have had my Amalgam fillings removed from my teeth and I have started cycling oral DMSA, a chelator of heavy metals. It may be difficult to find a doctor, but look for an enviromental medicine doctor to examine if metal toxicity could be part of your probelm. Standard blood screenings are good for what is in the blood, but a provication urine test (docotorsdata.com) will more acuratly show what your body may have stored away in varoius tissue.
I am also looking at Chronic/Late stage Lyme. I had IgG Western Blot test return that was suspiciously close to positive by CDC standards, and was positive by the labs standards. IGenex is the leading labratory in the US for Lyme testing. I would suggest finding a "Lyme Literate" MD in your area. Now keep in mind these are not your run of the mill infectious disease specialists, Lyme Literate MD's are well versed in Lyme and acknowledge and believe that there is a such thing as late stage or chronic Lyme. Also understand that very little is understood about Lyme, and researchers are really only starting to uncover the depth of this disease. Very little is known or even accepted in mainstream medicine about "chronic" cases. Wikipedia enlighted me on several of the views. A good place to start would be a Lyme support group in your area. They may be able to direct you to an MD. Also a good question is if you have lived in areas where Lyme is prevelant and spent a alot of time outdoors. The traditional bulls eye rash does not occur in all people, and it has been shown to not to not even occur at all in some patients. I think your symptoms are signs that your body is trying to fight "something". Have faith and educate yourself but humbly recognize that even the experts are not certain on Lyme. Do not latch on to any one thing but approach each angle as a learning experience. Keep your head up and good luck, you are not alone |
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#4
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Bless your heart. I think you are simply terribly undermedicated for your hashimoto's.
4+ TSH is wayyyyy too high for a Hashi's patient. Thyroidmanager.org, ( http://thyroidmanager.org/Chapter8/8-frame.htm ) recommends 0.3 -1.0. They are a very well respected thyroid research site. And anecdotally, many, many patients, seem to need it much lower to feel well. Like 0.01 or so. Some doctors, like mine, think that TSH is virtually useless for deciding on dose changes. The antibodies can skew the results. So better to use the total package, (symptoms, Free T3 and Free T4 rather than just TSH. Just about all of your symptoms seem like they are likely to be related to undermedcated hashi's. You might also look into celiac disease. It is another autoimmune disorder that is in response to gluten. When you have one autoimmune disorder like hashi's, you are more likely than the average person to develop another. It is a possible thought to explain the abdominal distension. Highly suggest you visit www.thyroid.about.com. Wonderful information and forums there full of people who've been there. Good luck! Geri |
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#5
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For your thyroid go to:
http://www.thyroidtoday.com/ExpertOp...ine.asp?page=2 The TSH range on this website is 0.4 - 4.04 µIU/L. The correct dose of thyroid replacement is based on your ideal body weight converted to kgs and multiiplied by a factor of 1.6. For me, that comes to about 112. However, since my hypothyroidism was left under treated for so long and I am overweight, I am now on a higher dose. As I lose weight my meds will be adjusted according to my TSH level and my symptoms. Someone on thyroid replacement will have a TSH between 0.5 µIU/L and 2.0 µIU/L for an optimal therapeutic level. On the thyroidmanager.org website they state an optimal therapeutic level is determined by a factor of 1.2 - 2.4. On the website I mention above the factor is exactly in the middle of 1.2 - 2.4 or 1.6. I would print off the page from the Thyroid Today web site and give it too your doctor along with the one from The Thyroid Manager. That is if your doctor has you too low of a dose, which it sounds like to me. You might also want to check into the possibility of sleep apnea. I have many of your symptoms and my new endo just referred me to a Pulmonologist. My husband has complained about my snoring and I have problems with breathing at times. I literally find myself not breathing while I'm sleeping and that is what awakens me. These following symptoms which you wrote are also symptoms of sleep apnea. And I have all of them too. Sleep apnea is a complication/symptom of hypothyroidism. incredible difficulty swallowing (sometimes even saliva), muscle pain everywhere else, Headaches (which I never used to get) increased frequency and intensity, 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, forty pound of weight gain in abdominal region. When you seek diagnosis for this be sure to find a doctor group which has a in house sleep clinic as opposed to one where you go home and then bring back the equipment. That way you'll get a more thorough testing. More specialists are better for getting diagnosed with sleep apnea. You can find out more about sleep apnea at: http://www.sleepapnea.org http://www.nhlbi.nih.gov/health/dci/...ea_WhatIs.html http://www.medicinenet.com/sleep_apnea/article.htm http://www.nlm.nih.gov/medlineplus/sleepapnea.html BTW, I didn't have a clue about all this until this week. Now I've read many web sites and found a great support site too. http://www.sleepapnea.org/ http://www.apneasupport.org/ Good luck! |
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#6
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your symptoms do match cushings - have testing done just to rule it out.
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#7
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Wow.
I just wanted to say thank you so much for all of your advice and the time that you all obviously put into your responses. In the meantime, I have been diagnosed with Thyroid Resistance Syndrome-- further evidence that there may be a pituitary tumor involved in my inability to regulate my TSH. I promise to keep you posted, and will also take the steps you all have reccommended. Thank you so much for all of your help. |
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#8
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Hi there...
Have they done a 24 hour urine on you to check for any adrenal issues? Many of your symptoms could come from a condition called pheochromocytoma, a very rare tumor that has a 90% cure rate... there is also a blood test called a Plasma Free Metanephrine test... it can't hurt to have this checked. Good luck on your way to a diagnosis and please let us know how you are doing. |
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#9
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Thank you...
No, no one has ever done a test like that. I'll ask about it the next time I see the doctor.... Thanks again... |
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#10
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Some of your symptoms sound like Chronic Fatigue Syndrome and also that you are still Hypothyroid. I have Hasimotos as well and took Synthroid for years, but never felt "great". When I started going to Dr. Wightman at the Holtorf Medical center (website below), he discovered that I don't convert the t4 to t3 correctly and was still low even though the lab tests were 'normal" . Once I stated taking T3, within a few days I felt a lot better.
After many doctors and specialists tellling me everything was fine or I'm tired because of three children, I finally went to Dr. Wightman and he found lots wrong : CFS, Thyroid conversion problem, adrenal fatigure, Epstein Barr virus, Fibron monomer (very bad), low horomones, and a few other thing. He was able to fix a lot of it. I feel about 80-90% better. Do yourself a favor and check out the website. Check out this website http://www.hormoneandlongevitycenter.com/ |
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