Experience with Hypothyroidism

Updated on May 22, 2012
S.S. asks from Brooktondale, NY
12 answers

I am scheduled for the blood test today, but all the symptoms I've had for the past ten years indicate hypothyroidism (why hasn't it been diagnosed before? Who knows, it's been a real medical odyssey from doctor to doctor and test after test for everything from cancer to a psychosomatic illness). I've read up on treatment, but would be very interested to hear stories from other moms who have been through this experience -- from diagnosis to treatment and beyond. When did you feel like you got your life back? Did the excess weight (I've got 20 pounds hanging around that just won't shift) drop? The exhaustion and depression lift? I'm looking for some light at the end of the tunnel and hoping for some uplifting stories.

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So What Happened?

Got the blood work back with 3.7 TSH and free T3 and T4 in the normal range, so my GP said there was no need for treatment, symptoms aside. Just got back from my obgyn though, who laughed and said "normal for him maybe, but not for us." She's now got me on a low dose (25 micro g to start, then 50) of levothyroxine (T4) and we'll take it from there. Thanks ladies for your encouragement and experience. Here's hoping things get better soon!

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answers from New York on

First of all- good luck! I;m glad that you have found some answers--- My thyroid system crashed in a matter of days-- probably had been coming for months-- I had gained a bunch of weight in the nine months after my wedding. I collapsed after a day of excrutiating joint pain and split my head open. I happened to have a doctors appointment so the ER ignored the problems. My doctor originally tested for lyme disease but the blood test came back with low thyroid- I have been on medication for the last 9 years. I have had 2 children since then ( low thyroid can cause miscarriages). The weight is still an issue but that is not just thyroid-- though it seems al low thyroid people I know complain about the weight-- my mother in law also has low thyroid- she is about 15 pounds over where she would like to be but she barely eats. Sometimes the joint pain comes back but that usually means its time to get back to the gym or higher dose of medecine. Sometimes I get tired but is defineitly better with medecine. hope you feel better...

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answers from Norfolk on

I've been hypothyroid for 18 years.
I was tired all the time and cold.
My hands and feet were often bluish they were so cold and my hair and nails were brittle and broke off easily.
I was on Synthroid for 8 years then switched to Armour Thyroid and I've done well on it for 10 years.
I'm one of those people who don't convert T4 to T3 very well.
Since Synthroid is all T4, it didn't take care of all my symptoms.
Armour Thyroid has T4 and T3 (along with trace amounts of T2 and T1).
You still have to work at losing weight, but with your metabolism working properly it's not as hard to do.
I know people who do very well on Synthroid.
People are different and some respond to one medicine better than another.
You just have to find which works best for you.
If you can find a doctor who is willing to work with you to find your optimal dosage, you will feel your best, but it's hard to find a good doctor.
Research and know what the 'normal' ranges are for TSH, free T3 and T4.
If your tests come back in a 'normal' range and you still don't feel quite right, then tell the doctor the other end of the range is just as valid a place in the 'normal' range and you'd like to try seeing how you feel if you can be in that range.
I personally feel my best when my numbers indicate that I'm right on the edge of being hyperthyroid.
We watch it carefully and make sure I have no hyperthyroid symptoms (heart racing, eye problems, etc) and I have a great doctor.


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answers from Washington DC on

Don't expect a miracle cure right away.
I was diagnosed 11 years ago and have been on Synthroid since.

I have to use brand name Synthroid, generic does not work.
Some people have to use generic.
It takes a good 6 weeks for the Synthroid to regulate your body.
You'll feel much better in a week or two, though. It'll be like you woke up.

It really does not regulate weight. Exercise and eating right will help you drop the pounds. 20 pounds in 10 years is not much, I gained 45 pounds in 6 weeks after my son was born, I was also breastfeeding.

You will have to go in to your doctor often until he finds the right dose. Every 6 weeks or so.

Depression, weight, heavy periods, dry skin, constipation are always a struggle for me. But Synthroid will keep you out of the fog. My husband callls it my stupid pill because without it I am a basketcase.

I don't understand why they wouldn't have tested for that first. It's a simple blood test. I would think they would have ruled out thyroid before 10 years went by.

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answers from Odessa on

My daughter was diagnosed at three months old with hypothyroidism. The standard of care for testing and treating hypothyroidism is not adequate at all. The testing issue is that the standard is tsh and t4. Insist that testing include tsh, Free t4, Free t3, and reverse t3. The "free" means free floating in the blood available for use. The t4 hormone has to be converted to t3 and then be received by the cell in the organs that need it. T4 is a storage hormone. T3 is what actually works. The reverse t3 test will show how much is being kicked out of the cell and pooling in the blood.

The lab ranges are too wide resulting in undetected subclinical hypothyroidism. The tsh needs to be at the bottom of the range. The Free T4 and Free T3 need to be at the top of the range. The reverse T3 needs to be low. There is a ratio between ft3 and rt3 that you can learn about at www.stopthethyroidmadness.com.

The gold standard taught to doctors is influenced by Big Pharma. Synthroid and its generic Levothyroxine are synthetic t4 hormone that required the body to convert. Medical issues (usually undiagnosed) prevent this. My daughter was on Levothyroxine for three years. Untreated hypothyroidism in infants can cause irreversible mental retardation and global developmental delays and numerous health problems. A couple months ago I was able to get her pedi to switch her to Armour, a natural dessicated thyroid hormone which includes t1, t2, t3, t4, and calcitonin. I was expecting improvement in a couple of months. But within three days, my Down syndrome daughter began putting her tennis shoes on with great control. She then started counting. Her hair finally started growing. She grew an inch in the first month, as much as the whole previous year.

Do not accept you doc telling your labs are normal if you still have symptoms or have been on Synthetic t4 and you are not feeling better.

The standard of care is like looking at an outside storage building to determine what the contents inside a house are. Treatment is like cleaning out the storage thinking that will affect the contents of the inside of the house.

Many cases are caused by an autoimmune disorder called Hashimotos. If you find you are hypothyroid, insist that the two thyroid antibody tests are run. Most patients who get relief of those symptoms is by a treatment called low dose naltrexone.

Good luck. If I would have accepted those words from my daughter's pedi that her newborn screening for hypothyroid were normal, we would also have assumed mental retardation was, "That's just Down's."

Newborn screenings are the same standard of care if even that. I am currently looking into whether it is just tsh or tsh and t4 testing. Her pedi said just tsh. Imagine all the babies undetected.

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answers from Kansas City on

Because doctors forgot, don't realize, . . . that hormones fluctuate. Most hormones have such a broad range of 'normal' levels that we can have huge swings and still be considered 'within normal limits'. Which is what was happening to me. I too have been dealing with symptoms 10 years, finally found a doc who kept digging. I found out that not only do I have hypothyroid but I am also on the brink of adrenal fatigue.

I'm probably answering this too late for you now, but ask (demand) they draw a Reverse T3. It is a test not on the 'routine panel' so therefore most docs won't or don't order it. But it for me was the test with the answers. http://www.stopthethyroidmadness.com/reverse-t3/

And as I said, I'm on the verge of adrenal fatigue. Which generally isn't recognized as a diagnosis by docs, although it had been for over 100 years! But just in the last 50 years or so, with changes in the insurance industry and honestly the influence of the drug industry, it altered how docs diagnose and treat everything and anything. I won't go into all the politics here, but I would also ask for a full adrenal panel.

Oh, and I am an RN so I'm not trying to trash the industry.

PM me if you want more info. I've got a ton!

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answers from Chicago on

I'm hypo and have been for 4 yrs. At the first blood test, I was extremely hyPER, and then it shifted. My regular doc started me on Levothyroxine, and I went for blood tests every 6 weeks until it leveled out. That process took about 3 months. For me, we caught it early enough that I didn't experience weight gain, luckily.

Something to be aware of, you can still feel "off" when you test within the normal range. For me, my ideal is a TSH of 3.8. We had to play with my meds to get me there, and I've been great for awhile now.

Once you have it managed, it's really not a big deal at all. You won't realize how crappy you've been feeling until it's corrected!

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answers from St. Joseph on

I hope your lab results give you a definitive answer. I have been having symptoms of hypothyroidism for about 7 or 8 years but my tsh levels always come back withing the "normal" range. My last test was 3.01 which by the reading I have done is not within the normal range but the lab says is it so my doctor wont treat but said she would send me on to an endocrinologist but the one she uses won't see me because my test came back with in the "normal range" I am tired of fighting this but at this point not sure what to do.

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answers from Houston on

I was diagnosed a couple of years ago. I thought I was going into menopause but nope, had this instead. I am on Synthroid because the generic doesn't work.

I'm not overly found of my specialist. I believe he is about numbers and not how I'm feeling. I call it the "crazy train" ride. If I go a couple of days without meds, I literally start to go nuts. Its is such a terrible feeling not being in control of your emotions and thoughts. I can always tell when the medication needs to be adjusted because the "crazy train" comes to my house.

One time, I was packing and I was going to go to London to get away from everyone and thing. I had already called the airline. Thank God I didn't buy the ticket. My husband came home and he was like "oh s#!%. I am very careful now to take the meds at the same time everyday and if I start feeling "weird" I call the doctor immediately!

I can say I feel pretty darn good right now, knock on wood!

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answers from San Francisco on

I had it for at least 10 years before it was diagnosed, but that was my fault, I never went to the doctor.

I wasn't overweight, so my weight didn't change. But within a week of taking Levothroid, I was awake, alert, aware, energetic - my whole personality changed, in my opinion. I had been seriously hypothyroid.

They've never tested you for it before? Hopefully the blood test will show that you are hypothyroid, then you can take the pills and your problem will be solved. Good luck!

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answers from Eugene on

Yikes, 10 years is too long to feel bad. The good news is that treating hypothyroid is an easy fix and once you are stable you can feel normal again.

I went a couple years thinking I was just depressed and tired from having kids. Then my hair started to fall out, alot, and I was diagnosed with Hasimotos Thyroiditis. I took synthroid for years and felt better.

Last year my thyroid went hyper and I was diagnosed with Graves disease, was treated with radioactive iodine and am now hypo again. Hypo is easy! I'm back on synthroid. It took a few months to get the right dose but I feel normal and good again. Except for having to remember to take my pill every day, I don't even think about my thyroid anymore.

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answers from Washington DC on

I found out that I was hypothyroid after my 4 year old was born. I hope you can get it all figured out. It's not fun to deal with. I was on synthroid for 3 years. I did not feel better at all while I was on it. I am now taking nature throid (a lot like armour thyroid - natural) and I am feeling a TON better. I have not lost all the weight. I am 138 and would like to be back down to 125. It almost seems impossible to loose the weight. Much harder than before.

So for me, I'd say it took about 3 years to feel normal because I just did not do very well on synthroid. I have a lot of energy but sometimes I will get an off day and I just want to sleep all day, but that's when I drink a lot of caffeine, lol! But most days, I do pretty good.

Good luck and I hope you feel better!

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answers from Boston on

I'm surprised it took them so long to even run this test for you - I'm so sorry you've put up with this for so long. I'd consider a new primary care physician - it's crazy that you were either dismissed (psychosomatic) or scared (cancer) or put through a battery of tests, when a TSH blood test is so routine.

I've been on the same dose of thyroid replacement med for many years and it's not hard for them to find the right one/right dose. I have a friend who had Hashimoto's and had her thyroid removed. She thought the meds would make everything all right, but found that she still had a lot of side effects. Hers were worse than mine, but we both experienced weight gain, hair loss, exhaustion and depression. We found phenomenal results from proper nutritional supplementation. We had both taken lots of multi-vitamins over the years, but didn't find we had results.

In fact, she and I met at a conference on supplementation, and we both now have great success stories to tell. At a recent conference, I met a woman who is no longer on her synthroid so I am going to do what she did. Please understand that no one just went off their medication - she did it in cooperation with her physician. I've gotten off many other medications (anti-depressants, allergy medication, and so on) and so I think the thyroid may just take a little longer, but that's my goal. Even if I don't get off the medication, just getting rid of the side effects (of the meds or the disease, either one), is awesome!!

I've never felt better, and my physician is absolutely thrilled with what I'm doing, and said to keep it up. My husband's physician (very well regarded in our area) is equally thrilled with his results in other health areas.

Also, with more energy, we are able to exercise more, which not only helps with our moods/depression, it helps with the weight! My husband's weight is completely stable, and both of us have seen our cholesterol go down. Also my blood sugar is now stable so that helps.

What I like is that the science is complicated, but taking the supplement is really easy. It's not in pill form so there's no problem with absorption - science has shown that pills are not absorbed completely and often not at all, so people who are choking down handfuls of different nutrients are wasting their money and often are in worse physical shape. Don't take individual nutrients - it's better to take something comprehensive. I make sure it's patented (so it's safe, effective and unique), made in the US (not just distributed here), and also allowed in certain other countries (e.g. Australian, NZ, Germany) that have much more strict regulations than even the US.

If you want more help, message me.

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