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Hypo symptoms with extremely low TSH

I've been suffering with increasing hypo symptoms for about 10 years now. Hair loss including pubic and eyebrows, extremely dry skin, 35 lb. weight gain w/out over eating, unusual bruising, edema, hoarse voice, cough, ridged and spooned fingernails, etc. etc. I was having blood labs done by various doctors for health problems following mold exposure in my home. None of the doctors seemed to read each other's tests and seemed to just put them in my medical file, and I wasn't getting better. I started keeping a chart of the various components and comparing them myself. I noticed my WBC was consistently low, as was my TSH. My watch caused bruises on my wrist. I became progressively more fatigued and befuddled. I had increasing anxiety and panic attacks. I put myself under the care of a psychiatrist who prescribed every anti-depressant known to man, none of which worked and most of which made me sick. My normally low blood pressure went up, as did my normally low cholesterol and glucose. I developed osteopenia that turned into osteoporosis, though I was on HRT and Calcium.I had extreme bleeding with my period.The gynecologist said she thought I had sub-clinical hypothyroidism.I asked to be sent to an Endo who said "Well, you're just getting older."and "You have plenty of hair." I lost almost 1/2 of it on the top of my head. My scalp hurt and itched. After several years she deigned to feel my neck and found my thyroid was enlarged. She said we would watch it. It grew. A year later she did an ultrasound that revealed nodules on both lobes. She put me on Synthroid ( to stop the nodular growth), but it didn't help the symptoms that she disregarded and my depression grew so bad that I was hospitalized. I insisted my primary doctor put me on T3 and T4 generics.

Within 3 days, my depression was completely gone and my thinking was clear. In 3 weeks I lost 15 lbs. and looked like a deflated balloon but felt better. I continued to slowly lose a little more weight without changing my diet or activity level. My hair gradually grew back, my hoarse voice went away as did my dry skin. My period normalized. However, my TSH went even lower, to .007. My T4 was 7.3 (4.5-12.0) but my T3 was high at 322 (83-200). These were not Free levels. I felt great, though. My primary then put me on Armour and all my bad symptoms returned. I went to a second Endo, who again didn't want to talk about symptoms and said "Everybody feels better on speed. That doesn't mean it's good for you."I wouldn't think someone suffering from panic disorder would have that response to "speed". He told me to stop taking all thyroid meds immediately. My primary disagreed because of the nodules. A second ultrasound revealed they had shrunk after I was medicated.

I went back on the T3-T4 regime, slowly got better this time, and continued to feel well for about a year.Then suddenly I got foot cramps, achey joints, anxiety, heart palpitations and dizziness. I couldn't get in to see my primary for a month, so I cut my T3 dosage in half, to 121/2 mcg., leaving the T4 at 50 mcg. Within about 5 days the hyper symptoms stopped, but the depression came right back too, along with an immediate 15 lb. weight gain and hair and skin reactions. Then I got achey muscles and night sweats again and other hypo symptoms, including sugar craving, which isn't normal for me.

I was so wretched, anxious and crying and exhausted every day. When I saw my primary she couldn't believe the weight gain in such a brief time. My therapist, who's convinced my trouble is thyroid related, noticed the radical shift in my affect. I fought to see a new Endo at the Pituitary Center, a Chinese doctor from Shanghai. I thought  perhaps I had a classic presentation for secondary hypothyroidism with the low TSH. My sister has Hashimoto's but I don't have antibodies. There are other autoimmune disorders in my family. I've been hit from the rear in my car 5 times with whiplash and concussion. And I had the toxic exposure to mold.

The new Endo did blood and 24 hr. urine tests, finally doing Free T3 and T4. I hung in there for a month until I could see her again, which happened  a few days ago. Based on my TSH, now .173, she too said to go off thyroid meds immediately. She said I would dissolve my bones and give myself a heart attack. Never mind that my Free T4 is now .91 (.82-1.77) and my Free T3 is 3.6 (2.0-4.4). My Vit. D, which had normalized to mid-range with supplementation of 1000 units is now sub-normal again on the same dose and my blood pressure and cholesterol have elevated again. I thought about it, looked at my labs, and increased my T4 by 25 mcg. 3 days later, depression is completely gone and I've lost 3 1/2 lbs. and my hands and feet and eyes weren't swollen when I woke up, and I got a good night's sleep for the first time in two months. I'm not a doctor and self-medicating is scary. I certainly don't want to dissolve my bones and have a heart attack. But depression can kill you too, and absolutely kills your ability to function. I see my primary next week. Does anybody have an idea what might be going on with me? Do I need to pay attention to the low TSH? In my case, the Bell curve doesn't seem to apply.  This is way too long, but complete.Thanks so much for reading it.


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Avatar universal
Thanks so much for reading all that. What's really sad is that I've been to THREE Endos,all at Cedars-Sinai in L.A. ALL of them told me I didn't need meds. All of them said the symptoms could be caused by other things. None of them offered an opinion as to what those things might be, which was especially disheartening given the constellation of symptoms. Do I have 3 or 4 disorders? What are the odds? Perhaps menopause is the villain? I'm on HRT, which the last Endo said I should also go off immediately.She said she has "several ladies your age" with these problems. Two of these "older ladies", aged 35, suffered headaches and were having trouble "working as executives in the film industry" and she got them to go off their meds and now they're fine. Maybe. WTMI, and what does any of that have to do with me??? I'm way older, I don't have headaches, and not trying to hang on to my youth, a wasted endeavor. And yes, most disheartening of all, two of the three doctors are women. I'm going to read the annamae26 thread right now. Many blessings.
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Avatar universal
Wow, what an indictment of some of the medical community.  I can't believe that one doctor wanted you to stop meds, even though you had all those hypo symptoms and the meds were doing you a lot of good.  He obviously was a subscriber to the "Immaculate TSH Belief".  It's unfortunate that you had to take matters into your own hands, but many of us have had similar experiences.

I think that if you have a few minutes, you will find a lot of interesting posts under the thread started by annamae26.  It's about half way down the first page.
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