Hypothyroid?

[MrsMe]

Anyone have this? I was just diagnosed with it. Anything I should watch for or insight from those who have it?

Thanks!

[Geek]

If you have a doctor who doesn't listen to how you're feeling and instead says, "The lab says such-and-such. End of story" RUN. DON'T WALK.

 

I've dealt with this for over 20 years. The most important thing I've learned is to find a doctor who will treat YOU, listen to YOU, and take your symptoms seriously.

[JenneinCA]

I have dealt with this for many years. I agree with the pp, find a doctor who will listen to you about how you feel.

 

I have been on thyroid medicine for a long time at a very very low dose. I went to my doctor (a family practice guy) saying I was very tired and always cold. I said that I thought the thyroid medicine dose was low. He disagreed and thought I was anemic. But he ran the blood work for both the anemia he thought I was the problem and the low thyroid I thought was the problem. As it turned out I was not anemic and the thyroid was borderline. But because I was having issues, he increased the dose and all is well. He listened. He is not an endocrinologist or a specialist of any kind. He listens though and that is what makes him a keeper.

 

Definitely find a doctor who will listen.

[Susan C.]

I'm a thyroid patient, and do much better with natural thyroid (NatureThroid).

[LG Gone Wild]

I am on levothyroxine. It's never been quite right despite trying this or that. Weight loss is difficult and sluggishness can be a problem but I've had hyperthyroidism and that was scary. Hypo is merely annoying and inconvenient.

 

Take Vitamin D supplements (always) and caffeine when necessary.

[MrsMe]

Ugh...sounds like the meds will be a crap-shoot. :001_huh:

[HiddenJewel]

My thyroid started out hyperactive and so they killed part of my thyroid with radioactive iodine. (If only I knew then what I know now.) I have been on Armour Thyroid for over 10 years with good success of balanced levels. Iodine makes a big difference for me as well.

 

You will want to make sure that blood levels are monitored using more than just your TSH reading.

 

Another important thing is to determine WHY your thyroid is low. Is it just underactive or is the auto-immune issue.

[MrsMe]

My thyroid started out hyperactive and so they killed part of my thyroid with radioactive iodine. (If only I knew then what I know now.) I have been on Armour Thyroid for over 10 years with good success of balanced levels. Iodine makes a big difference for me as well.

 

You will want to make sure that blood levels are monitored using more than just your TSH reading.

 

Another important thing is to determine WHY your thyroid is low. Is it just underactive or is the auto-immune issue.

 

I haven't spoken to her yet, I'm waiting for a call back. So I'll find out why. What do you mean by blood level monitoring?

[Peela]

Several threads about this lately.

Do your research- it is often treatable without becoming dependent on artificial hormones for the rest of your life, or even natural ones.

I was diagnosed recently too- I am on a gluten free diet on my doctor's advice- there is a strong correlation between gluten and hypothyroidism.

[HiddenJewel]

I haven't spoken to her yet, I'm waiting for a call back. So I'll find out why. What do you mean by blood level monitoring?

 

By monitoring I mean knowing what the actual thyroid hormone levels are. T4 is inactive thyroid hormone that must be converted to T3 by your body. T3 is the active hormone. Some people have trouble converting T4 into T3 depending on what the cause of the malfunction is. When I test, I usually get a TSH, Free T3, and Free T4.

 

And definitely check what you can do nutritionally and with supplements to maintain a more balanced thyroid. Hormone replacement is not the only answer depending on your situation.

[Ravin]

The upside to hormone replacement is that it's inexpensive. Generic levothyroxine is only $10/90 doses or $4/30 at a number of major pharmacies.

 

I was diagnosed as hypothyroid when I was 11...it runs in my family and my mom, grandmother, and an aunt have the same condition. I've had to be "rediagnosed" several times after going off meds when I didn't have insurance. Anyway, pay attention to your body and get your levels checked as often as necessary (for me it's once a year, more often when pg and postpartum).

 

I've always treated it with levothyroxine and it's worked fine for me. I'm on a lower dose now than I used to be; my daughter's gave my thyroid gland a jolt and it started working better. I started avoiding soy foods, too, and I think that may have helped some.

 

Good luck!

[Negin]

The following books are said to be very good:

 

From Fatigued to Fantastic by Jacob Teitelbaum

Living Well with Hypothyroidism by Mary Shomon

The Thyroid Diet: Manage Your Metabolism for Lasting Weight Loss by Mary Shomon

The Ultra Thyroid Solution by Dr, Mark Hyman

 

I have lots and lots of notes, but cannot really share them right now, since they're so unorganized and all-over-the-place. I don't know when I'll have time to get them organized. Agreeing with Peela to do your research. Search here on these boards for previous threads.

 

If your scroll down this page, you'll see related threads. :)

[jplain]

What tests were used to diagnose you? If it wasn't an endo who diagnosed you, be sure to get copies of those results and look into whether the right tests were ordered. Shockingly, most general practitioners do NOT know to order the right tests. They often check the box for thyroid panel, but those tests are outdated, and the numbers are pretty useless. For example, instead of measuring free T3, the panel measures total T3. That number is especially worthless for women, as much of the total T3 may be bound to estrogen and thus inactive. In my case, it is the opposite though: my total T3 is low, but my free T3 is within normal range, though on the low side. So as Hidden Jewel mentioned above, you want to make sure your levels of TSH, free T3, and free T4 are tested. Other tests that might be useful include RT3 and anti-TG and anti-TPO antibodies. Other things to check are vitamin D, vitamin B12, and ferritin (specialized test for iron, don't settle for the regular iron tests). Deficiencies in any of those things can cause symptoms very similar to hypothyroid.

 

I seem to slip in and out of being slightly hypo, and once in a blue moon I have some hyperthyroid-type symptoms. However, aside from cold intolerance and painful menstrual cramps (which could be just perimenopause) I'm not symptomatic right now, so I'm not pursuing further diagnosis/treatment at the moment. I've been checked for Hashimoto's antibodies a few times, and they're always negative. I've had a thyroid ultrasound, and that was normal, though one lobe is slightly enlarged. But given my health history since my first child was born (lots of random symptoms suggestive of autoimmune disease), I suspect I do have antibody-negative Hashimoto's.

 

For the moment, I'm focused on a dietary approach. Like Peela, I'm on a strictly gluten free diet, and that may have improved my symptoms of hair loss and low energy. (I also switched to a milder shampoo.) I was on-and-off GF for a couple years when trying to figure out whether my breastfeeding daughter is gluten-sensitive, but I've been strictly GF for 18 months. I can't say for sure that going GF is what made the difference, but I am doing much better. I also strictly avoid soy. The dietary approach I follow was recently re-named Paleo 2.0. That page is written for sciency-types, so if you want a simpler explanation PM me and I'll break it down to the basics.

 

I also follow the supplement suggestions for hypothyroid suggested by the authors of the Perfect Health Diet (book and blog). At the moment, I'm holding off on taking any supplemental iodine. I know that many thyroid patients have had good results with iodine, but I am concerned that it could cause a Hashimoto's flare-up. At the moment I'm siding with Chris Kresser (blog) and Datis Kharazzian (author of book linked below) and Mary Shomon (link) on this topic, rather than with some others in the field who recommend rather high dose iodine supplementation for hypothyroid patients.

 

I rarely eat out unless we're traveling. When we're not traveling, I only eat out at a few places where I've talked to the managers/employees and I'm fairly confident that they won't cross-contaminate my food. They are a local BBQ place that only has gluten in bread, and Five Guys Burgers and Fries, a hamburger place that only has gluten in buns. When we travel, my random symptoms flare up if we eat out instead of cook in. Yeah, it is annoying, but I think my long term health is worth the inconvenience of having to cook for myself. Plus I care a lot about what I put in my body, so I prefer it when DH or I or my parents (who don't mind backseat chef'ing :)) do the cooking.

 

Here's another book suggestion, one that includes a thorough discussion of gluten and other dietary issues: Why Do I Still Have Thyroid Symptoms?

 

Good luck!

Edited April 6, 2011 by jplain

[Sahamamama]

If you have a doctor who doesn't listen to how you're feeling and instead says, "The lab says such-and-such. End of story" RUN. DON'T WALK.

 

I've dealt with this for over 20 years. The most important thing I've learned is to find a doctor who will treat YOU, listen to YOU, and take your symptoms seriously.

 

:iagree: IME, a good endocrinologist is hard to find. Also, IME, this specialty seems to be a magnet for strange personality types.

 

About 15 years ago, I had undiagnosed Hashimoto's disease. It was awful -- no one listened to anything I said, I was falling apart little by little, and the doctors were basically clueless.

 

After I moved back to New Jersey, I found a great endocrinologist who wondered why no one in that other state had ever diagnosed me with Hashimoto's disease. As he looked at my records, he looked up and said, "My, how you must have suffered." At last, I had found someone who really did understand what I had been through. Of course, he retired. :glare:

 

The biopsies never were conclusive enough to rule out cancer. Ultrasounds showed that the whole thyroid was abnormal and growing. Hormone Suppression Therapy was not working to reduce the growth, so in the end, I had my entire thyroid removed (something I would not now recommend, actually), and we did find cancer. I had to become "hypothyroid" for the cancer treatment, a radioactive iodine isotope (one pill). The pill was like fire going through me, and I was in isolation in our apartment, while my husband and daughter stayed with my parents. That was a hard week.

 

My next string of endos -- Dr. X, Dr. Y, and Dr. Z -- were okay, but they all went out on maternity leave, one after the other. I got tired of explaining the same story over and over again, so I decided to find a male endocrinologist. I was lined up to see him again once per year.

 

But something happened over this past winter -- I nearly went into a myxedema coma, which can occur if you are hypothyroid for a long period of time without noticing.

 

My husband noticed that I was "winding down," but he didn't say anything, the scallywag. :glare: He worried so much that he even took out all my Synthroid pills to check each one for the name brand and the dosage. But he thought maybe I was just tired of winter...:confused: At some point, though, he finally did say something, and I made an appointment to see my PCP.

 

In February I crashed. Could. not. move. I became rather "fuzzy-headed," you know, not exactly quick to the draw. Did things like: Picked up the perfume bottle because I heard the phone ringing. Spent two whole minutes talking to the perfume bottle. Duh.

 

Could NOT figure out how to sign a check.

 

Could NOT answer a direct question about what's for supper.

 

The lab work from the PCP showed that my TSH was 20. It's supposed to be 1. :001_huh: Anyway, I am slowly coming back up from that abyss.

 

Here's my advice:

 

1. Find a good endo, which might be a task in itself. But a good endo is worth his weight in gold. IMO, I want a male, because of the maternity leave hassle, but that's just my personal preference. Also, ADVOCATE for yourself. Don't settle into the passive role, especially with this condition. I know you are "tired," but you have try to hold yourself together long enough to get good help. Don't quit or give up! :grouphug:

 

2. Familiarize your FAMILY with the symptoms of going down the drain, because it's not enough for you to know them. If you are truly hypothyroid, you will not be thinking straight. Impress on your husband, your mother, your older child, the need to be aware and active. A family member might save your life in this way.

 

3. Learn to let go of.... whatever you can't hold on to? For me, it was the perfectly clean house. :tongue_smilie:Realize that your lack of "umph" is not a matter of being lazy, a matter of will power, or discipline, or whatever. It's just your chemistry. It IS that way, but you can also get regulated and feel better.

 

4. Hang onto your thyroid. I say this NOW, but I was happy to have it out then. I don't really regret my decision. I saw the impossibility of it ever being a healthy organ, in my case. But if YOU have ANY healthy tissue, guard it. Do you KWIM? If you have any HEALTHY tissue, leave it in your body. It will not do you any good in a garbage can. Enough said.

 

5. Go to bed on time. I can't emphasize this enough. Choose a bed time, choose a rise time, and stick with it, as much as possible.

 

6. If you are on hormone replacement, don't take your medication with calcium or iron supplements. Best bet: Empty stomach, first thing in the morning, eat 30 minutes later. At least, that's what my doc told me. ;)

 

HTH.

[Lizzie in Ma]

The upside to hormone replacement is that it's inexpensive. Generic levothyroxine is only $10/90 doses or $4/30 at a number of major pharmacies.

 

I've always treated it with levothyroxine and it's worked fine for me. I'm on a lower dose now than I used to be; my daughter's gave my thyroid gland a jolt and it started working better. I started avoiding soy foods, too, and I think that may have helped some.

 

Good luck!

 

that's funny, mine didn't go haywire until I had my girls. Life is funny. :)

[MrsMe]

Wow...all this information. Thanks for your help. Dr put me on Levothyroxine and I feel human. Unless it's all a fluke, since Sunday, I'm sleeping better. Sleepy is one thing, too tired to walk to the sink was another. :001_huh: I'm less jittery...well a lot less jittery, my face isn't as puffy, my heart isn't pounding and I can actually stay awake during the day! I will also say that my brain isn't going so much that I can't focus. Ah! And the first time I'm not freezing! :D I don't know anything about T3 or T4 just the TSH in general. I read things about diet, but nothing I really eat that I read about seems to be an issue.

 

Where is gluten mostly found? I'm not big on bread or crackers.

 

I always chalked it up to getting older (just turned 50 sigh), but I really knew I shouldn't feel this lousy already.:tongue_smilie: I've always had all my tests done annually and other than last year's borderline thyroid (which I didn't know about and last year looks like the first year I didn't get a copy of it all), they've all been normal...all right in the middle.

 

I seem to feel better on a daily basis. Oh and my neck doesn't feel huge. Oh... and FWIW dh noticed I'm different. Probably not so cranky because I'm not so fatigued? All that stuff on the list...feeling better.

Edited April 6, 2011 by alilac

[Impish]

Gluten is in just about EVERYTHING. Read, read, read labels super carefully. If its got wheat, its got gluten is my rule of thumb. Even flipping soya sauce has wheat!!

[MrsMe]

How do they find out WHAT causes it?

[HiddenJewel]

Wow...all this information. Thanks for your help. Dr put me on Levothyroxine and I feel human. Unless it's all a fluke, since Sunday, I'm sleeping better. Sleepy is one thing, too tired to walk to the sink was another. :001_huh: I'm less jittery...well a lot less jittery, my face isn't as puffy, my heart isn't pounding and I can actually stay awake during the day! I will also say that my brain isn't going so much that I can't focus. Ah! And the first time I'm not freezing! :D I don't know anything about T3 or T4 just the TSH in general. I read things about diet, but nothing I really eat that I read about seems to be an issue.

 

Where is gluten mostly found? I'm not big on bread or crackers.

 

I always chalked it up to getting older (just turned 50 sigh), but I really knew I shouldn't feel this lousy already.:tongue_smilie: I've always had all my tests done annually and other than last year's borderline thyroid (which I didn't know about and last year looks like the first year I didn't get a copy of it all), they've all been normal...all right in the middle.

 

I seem to feel better on a daily basis. Oh and my neck doesn't feel huge. Oh... and FWIW dh noticed I'm different. Probably not so cranky because I'm not so fatigued? All that stuff on the list...feeling better.

 

So glad you are feeling better. All the things you listed could definitely be thyroid.

[Impish]

They don't. Genetics, environment...they just can't know always.

 

My gma had hypothyroid after her first child, and it corrected itself with her 2nd. I was dx'd about 16 yrs ago, and its never corrected itself.

[mommymilkies]

They don't. Genetics, environment...they just can't know always.

 

My gma had hypothyroid after her first child, and it corrected itself with her 2nd. I was dx'd about 16 yrs ago, and its never corrected itself.

 

I had it after #2 when I couldn't bf, and it went away right before I got pg with #3. My 6 yo (#3 kid) has profound Hashimotos. Her tsh was 617. Her Celiacs test was negative. It's so frustrating.