If this is normal, I’m not impressed
I have a 40-something relative who I’ve been getting to know better lately. When she found out I had written the STTM book, she got a copy and read it. Her eyes were apparently wide as to what she was reading, especially the Thyroid Stimulating Hooey chapter. Turns out she has had fatigue problems for at least 14 years, right after her daughter was born. And it shows in her eyes and demeanor. But that’s not all. She’s continually gained weight all these years, even though she eats like a bird, and enough depression to warrant an anti-depressant. She was also getting worried about her cholesterol. Typical hypothyroid symptoms.
And worse (anybody identify with this?), she’s been told she is NORMAL for 14 years!!! Why? Because the TSH lab result said so. Talking about it brings her to tears.
I sent her to a MUCH better and hopeful doctor.
In 2006, the World Health Organization defined health as a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity. So…if you stuck “normal” in front of that definition of health, as ignorant doctors so routinely tell us we are, it means that we have the symptoms expected of one who is in complete physical, mental and social well-being. THEN WHY DON’T WE FEEL THAT WAY?????
Yessirree, somewhere along the medical perspective timeline, the ability to pay attention to CLINICAL PRESENTATION ran right down the sewer. And with that loss has come HUNDREDS OF MILLIONS of patients worldwide with the schizophrenic diagnosis of “normal” with raging symptoms thanks to ink spots on a piece of paper called the erroneous TSH range. Exactly why this website is necessary, as is the book and YOUR demands for better treatment.
I was schizophrenically normal for over 17 years. My relative has been for 14. How about YOU?
May 16th, 2008 at 5:13 pm
Please know that you are RIGHT ON!
I feel like a fool. My gyn prescribed me Nature-Throid (similar to Armour). Although I had many symptoms you list here, I became afraid, because, when I asked for my labs, they were completely normal.
So…. I went to an endo. He took me off the meds, because of the labs. I am now far worse than ever before. Before I had about four of the symptoms. Now I have practicall ALL of them. So…. The endo (who originally said he preferred Synthroid, drew a whole diagram to explain why) has now put me BACK ON NATUR-THROID, and this after the most painful, upsetting 8 weeks of my entire, long life!
Thank you for informing people about what you know so well.
May 17th, 2008 at 6:28 am
I can sooooo relate to your stories. I was hyper many years ago (oh the brain fog, late 80’s or very early 90’s, figured out recently it was Grave’s) after having my third child. Several months of anti-thyroid med’s later, I ended up hypo. My GP thought I was adequately treated for 12-15 years with ever increasing doses of $ynthroid. Needless to say I gained weight (40-60 lbs), blood pressure elevated, frequent bouts with anemia, horrendous allergies developed, quality of life went down the tubes. With no energy to do much else, I went online and found this site and the about. com site. It has been a revelation to me!
When I first asked my dr about T3, I got a lecture about why is was unnecessary and bad for me. I asked to see an endo, but it took many months before he prescribed desiccated thyroid. He left me on a low starting dose too long (3 months), and it has been a long slow road to recovery. In January this year, after a little over a year on it, I joined Curves to try and boost my metabolism and get my heart healthy again. I haven’t lost much weight (no energy to diet yet, and don’t think restricting calories would help the still struggling metabolism), but I am building muscle and have lost about 18″ so far. I feel no pain after exertion now, just a pleasant tiredness. Coincidentally, I started to suffer weakness shortly after joining, and came to suspect anemia. Taking iron supplements seems to be helping. I’m not all the way back yet, but I shudder to think what life would be like without the information I found here.
Jane’s book is awesome! I just got it this week, and I’m still poring over it. There is a light at the end of the tunnel! And it’s a shame that we have to beg our doctors and feel like shrill harpies to get the help we deserve! This is a no-brainer! How can we get doctors to listen and see what is right in front of them?
June 1st, 2008 at 8:34 am
I am seriously about to walk out on my family because I/they can’t live this way any more and (I’m serious here) harm myself in some way to finally be taken seriously, but I’ll likely just be forced into a psych ward somewhere where I have no control and they won’t do the proper investigation ‘just cause I say so’ anyways. I’ll just be labeled, maybe even kept there against my will needlessly. I’ve had over 30 years of real crap, over 20 of it repeating myself over and over to my md and all thyroid tests coming back normal. All that’s missing in the hypothyroid posts and books written by experts is my photo on the front. Yet last week my md flatly refused to send me to an endocrinologist -wanna know what she actually said? She said, “They don’t deal with this, if you were having trouble getting pregnant, that’s what I would send you for.” Because the repeated thyroid tests have been normal. She wrote me off long ago as having generalized depression and anxiety and that’s been it. Over a dozen anti-depressant meds that didn’t work out, a minimal dose of daily Clonazepam that I’m addicted to, and thousands of dollars wasted over the years on therapies and counseling I had to fully pay for, I go home and get on the Net, and what do I see EVERYWHERE? That’s PRECISELY what endos specialize in -the pituitary, adrenal, thyroid, and all other hormones as well. I just read yet another thyroid book, The Thyroid Solution by an endo in Houston that people travel thousands of miles to see. So much of it that’s true for me I am stunned to read more that I didn’t know -the stuff in my family aside from a hypothyroid mom, -(she and I both lost 50% of the hair on our heads, I grew excess on my face), my PCO, the panic attacks/depression, cognitive problems impairment/, even the high incidence of addiction that runs in my biological family? All there in the book, and more. I have fibromyalgia (diagnosed by 3 naturopaths -my md doesn’t think I have it), IBS, severe menstrual pain and PMS, post-traumatic stress disorder symptoms for many years (I am now lucky to leave the house), my thyroid is now enlarged which causes me a sore throat and hoarse voice.I went for blood tests Thursday and don’t have them back yet, July 9th is the soonest for an ultrasound. What really bothers me is reading in the book over and over again, “After suffering for over a year/2years etc., her life in shambles, so-and-so finally got the help she needed”, that it IS very possible that all this started when I was a teen as I suspected, and that prolonged conditions (what would you call 36 years)really can affect the heart and the brain, sometimes permanently. I’m getting a new md, and I found a Dr. Leonard Direnfeld in Scarborough highly recommended on the “Best Thyroid Doctors in Canada” postings and will call his office Monday. Someone posted that they waited 4 weeks to see him which doesn’t sound too unusual to see a specialist, but to tell you the truth, (and I’m sure everyone’s an ‘urgent’ case), I will have lost my family by then. If my md prescribes anything, I simply don’t want to go through the T4 only, automatic Synthroid etc. trial/going back & forth with my md nonsense. I would give anything to see Dr. Direnfelf asap.
June 11th, 2008 at 10:05 am
Thankfully, it has only been three years for me. I’m up to 100 mg Amrour sublingually now. On each dose increase, my symptoms go away for about two weeks, and then begin to creep back. But what a joy to have a couple weeks of feeling 95% percent normal again. Hopefully, I will arrive at the optimal dose soon. My heart rate is still 45 to 50, and has not budged, and I am not athletic, though I am very slim. My biggest symptoms have been IBS, FMS, and CFS. It was a beautiful day when I could eat without pain again. The days became even brighter when my pain spots stopped paining.
July 7th, 2008 at 12:08 pm
My problems started in the early nineties. Both my sons were around five years old. I developed Fibromyalgia, although getting to that diagnosis was a horrific experience, itself. I was misdiagnosed with a form of rheumatoid arthritis that goes undetected by x-ray or blood work. A reputable rheumatologist put me on Feldene and Prednisone for six months. It did no good. In the interim, I gained 60 pounds. The vicious circle of low self-esteem coupled with depression caused me to no longer care about how I looked. Soon, I was up to 100 pounds heavier. I am now 175 pounds overweight. Since that time and becoming progressively worse, I have extremely low energy, I have trouble putting sentences together due to a thousand thoughts racing through my head at one time, I’ve developed asthma and my allergies have become worse—basically anything I had wrong with me initially has been amplified unbelievably. My once gorgeous mane of hair is now thin and brittle. I have vertical cracks in two of my molars from stress-clenching. I have TMJ. Everything hurts 24/7. I have trouble getting up stairs. I have trouble cleaning. I have trouble cooking. I have trouble sitting and standing. I have been misdiagnosed with ADD. I have recently been diagnosed with bipolar disorder and put on lithium and Lamictal. For the first 6 weeks, I felt like a new person. Now, I feel like dying. As with every antidepressant I have ever been on (and I do believe I’ve been on them all), I feel great for the first month and then they cease to work. It wasn’t until recently, my “borderline low” thyroid level was brought to my attention by MY PSYCHIATRIST and not my primary care physician, who had my labs because she wanted to see my lithium levels. I just turned forty. I have literally lost 20 years of my life to whatever is going on with me. I have an appointment with an endocrinologist on Friday. I know what to ask. I know to bring a completed checklist. I made sure to have all my medical records sent over there ahead of time. My husband is coming with me. I will be taking complete notes. I am not going to allow another doctor to misdiagnose me just to shut me up. I will never get the past 20 years back but I’ll be damned if I’m going to sacrifice the next 20. I’ve been taking magnesium supplements to try to weed out a magnesium deficiency. While it has helped some, it hasn’t eradicated any of my symptoms.
Reading the previous four stories and reading pretty much the rest of this site, I am determined now more than ever to stand up for myself and not believe a doctor just because he’s a doctor. I truly wish none of us had to go through this. We’ve all lost valuable time, some have lost their families and others have waning sanity. There is no excuse for this especially since the medical technology is in place to prevent or treat any and all symptoms by treating their host. Thanks to all of you, especially Janie for this no-holds-barred site. I feel like there is real hope where there has only been false hope.