Hypothyroid but no family history - how common is this? & my story
The above says it all, I have absolutely no family history of anything thyroid related!
Other than this, I wanted to briefly share my experience to far with this illness...
I was first diagnosed a year and a half ago - but believe it was manifesting a long time before this. My symptoms have included the following---
Total of 25kg weight gain to date
Increased sweating in general
Increased body hair
Brittle, ridged nails
Dry, brittle hair
Irregular and increasingly painful periods
Dark circles under eyes
A lot of other things I can't think of right now.
My original test results came back a few numbers shy of me being hypothyroid... I was 65kgs at this time. A doctor I saw this year told me he wouldn't have put me on medication at this point but I'm glad my doctor did. I was put on Thyroxine 50mg... It didn't help at all... Weight gain and symptoms continued until I'd hit the 77kgs I am now.
I finally gave up and doubled my medication to 100mg. Only now I could stop more weight from being gained - as long as I didn't miss any pills. I soon got sick of being sick, so did some research and discovered the growing trend towards Desiccated Thyroid. I wanted to try it so went through several doctors who refused to prescribe it until I found a great one who did.
I was prescribed 50mg of Desiccated Thyroid and my health improved within the first week significantly, but not 100%. I'm still waiting for preliminary test results to see how my body is reacting to this.
I just wanted to say to all the doctors that made me suffer through a year of hell... Please listen to your patients. Please prescribe them something other than the Thyroxine if they aren't getting better while taking it. People are suffering.
You will like the website called: Stop The Thyroid Madness. This is just the front page. :)
"Stop the what??
Well, here’s the skinny. Globally, informed hypothyroid patients have come to a unified conclusion that for 50+ years, they have been subjected to a thyroid treatment which didn’t work, leaving their lives compromised with lingering thyroid symptoms, besides adrenal stress and low levels of important vitamins and minerals.
Could you, a friend or a loved one be a victim of this poor thyroid treatment? You betcha.
THE NON-DIAGNOSIS CLUB: This huge global group consists of those with genuine or unrecognized hypothyroid symptoms, yet no accurate diagnosis. Why? Because of well-meaning but clueless medical professionals who not only fail to note the entire cluster of your hypothyroid symptoms, but rigidly rely on the TSH lab test, which is a blatant failure. You are then proclaimed “normal”.
THE T4-ONLY CLUB: This huge global club consists of those diagnosed with a thyroid problem, but treated with Synthroid, Levoxyl, Oroxine, Levothyroxine, Eltroxin, et al, T4-only thyroxine pills. But we found that hypothyroidism and the body is not meant to live on a storage hormone alone, leaving many patients with their own brand or intensity of lingering hypothyroid symptoms.
My name is Janie, and I am a thyroid patient activist, author, blogger and creator of this informational, educational patient-to-patient site—STTM for short. It’s meant to be helpful and empowering information based on the experience of patients worldwide to inspire, educate and be taken into your doctor’s office.
Stop the thyroid madness™! It’s not working. It never has! It still doesn’t.
P.S. Still think this site may not apply to you? Go here for more information."
While many people find that desiccated works best for them, recent comments on the forum have made me aware that a lot of people are getting the misimpression that desiccated is the only thing that works for anybody. Sites like STTM certainly reinforce that impression.
I think it's very important to understand that T4-only meds DO work for some people (myself included). "But we found that hypothyroidism and the body is not meant to live on a storage hormone alone, leaving many patients with their own brand or intensity of lingering hypothyroid symptoms." (quote from STTM, I assume). No one expects the body to live on a storage hormone alone. The vast majority of T3 used by our bodies is converted from T4, whether that T4 be produced by our thyroid or in pill form. For those of us who convet well, T4 meds work just fine.
We're all different, and one hypo's heaven is another's hell. There is no "best" or "only" treatment for hypothyroidism; there's only what works for each of us best individually.
I wouldn't ordinarily make this comment...never thought I'd be defending T4-only meds...but, as I said, members have recently said that their impression was that we were all very pro-desiccated. They were very depressed thinking they could not get well unless they could get desiccated. That's not true, and until you've tried any of the therapies, you don't know how it will work for you. Keep an open mind...
I totally agree with goolarra, regarding the T4-only meds. I've been on T4 only med since the beginning of my hypo days, and while I did have to add a small amount of T3, due to slight conversion issue, I do very well.
Not every can (or should) be on desiccated, and it's wrong to make people
believe they can't get well if their doctor won't prescribe it, or it's not available for some other reason.
In addition, many of the people who do well on T4-only don't end up seeking help on sites like this.
Just wanted to add to Barb and goolara's comments re: dessicated. I am currently on T4 only, using Tirosint and it has treated me kindly. I tried dessicated, and my appetite grew exponentially to the point that I felt hungry all the time, something that I have never experienced before in all my years. Synthroid caused me to gain about twenty pounds (I believe I am allergic to the fillers), but Tirosint brought me back to my regular self. There is no other in my family who has been diagnosed with thyroid issues, and I often wonder if there is something environmental that is causing this sudden boom in thyroid malfunction. Either that, or there are tons of folk walking around miserable due to a malfunctioning thyroid, yet refuse to discuss symptoms with their doctor because they're attributing them to stress, motherhood, and all else under the sun.
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