Thyroid info, please

[runamuk]

Ten years ago, I was diagnosed with hypothyroidism. My doctor put me on Synthyroid and the dosage has been steadily rising (I'm now at 250mcg). I'm still having symptoms and my TSH has been fluctuating between 3.0 and 7.5. I'm seen at a military clinic and it's like pulling teeth to get any info out of the doctors there. I'm usually not told my levels, even if I ask (the last doctor I saw told me of my fluctuating level, but I really had to press for them), and I don't think they test for anything but TSH.

 

I'll be the first to admit that I haven't taken the initiative in my health care and have just been trusting the doctors to take care of me. (Is there a hanging-my-head-in-shame icon?) I've accepted their explanations for why I feel so awful (weight gain, weight loss, pregnancy, nursing, etc - I even had one doctor tell me I was supposed to feel tired because I was a mother). But I'm tired of never getting any real answers and I'm tired of always having these symptoms.

 

I'm going back in for another appointment in a couple of weeks and I'd like to have some good information with me when I ask for a referral. I really don't understand how my thyroid works or what the tests are testing and what the results mean. (Is there a Thryoid for Dummies?) My needs are twofold: I need to understand what is going on in my body, and I need to be able to discuss with the doctor that the current treatment isn't working and why I need a referral to a specialist. I've read the literature the clinic hands out and I've looked various websites, but I'd really like to find a book or website that isn't trying to sell me something.

 

Where do I start? :confused:

[bbsweetpea]

Get the book Thyroid Power.

 

It will teach you how to be an advocate for your Thyroid Health. It also gives you other tips on how to keep your symptoms under control without just using meds. Sleep, diet and exercise are key ingredients to feeling healthy when you are hypothyroid.

 

Oh and I was diagnosed with being Hypo when I was 21 after gaining 100 lbs in 6 months. It took a couple of years to get it under control and even then I really did not understand the importance of being on top of my health. Only just recently with the help of a friend have I started to turn things around and actually FEEL better. Even when your levels are normal you don't always feel well.

Edited February 19, 2010 by bbsweetpea

[runamuk]

Even when your levels are normal you don't always feel well.

 

This is so true! I've had times when my TSH results came back within the normal range but I was still having symptoms. The doctor I was seeing at the time said that I couldn't be feeling the way I was because "numbers don't lie".

 

Thank you for the book recommendation. Off to see if my library has it. :)

[Jen in PA]

This is so true! I've had times when my TSH results came back within the normal range but I was still having symptoms. The doctor I was seeing at the time said that I couldn't be feeling the way I was because "numbers don't lie".

 

Thank you for the book recommendation. Off to see if my library has it. :)

 

My doctor always calls me when she gets my bloodwork results and asks about all of my symptoms before she even tells me what the lab said. She wants to know, for example, what I feel like when my TSH is at 5, or at 3, etc. She feels that the numbers count for showing what my body is doing (how much my thyroid is able to produce on its own), but knows that they don't tell the whole story. She also stresses the importance of noticing subtle changes so that dosage issues can be caught betwen blood tests, and always states that her thyroid patients usually end up able to tell when they move out of a healthy range on their own -- in short, she trusts her patients. And this is from a family practitioner, not a specialist. I strongly urge you to find another doctor.

[Parrothead]

I've got hyperthyroid. My symptoms are pretty much the opposite of yours. But there truly can be too much of a good thing. At my worst, I can't eat enough to keep my blood sugar up enough to get off the couch and walk to the kitchen.

 

I have found that doctors play a numbers game. If your numbers are in the normal range then there is nothing wrong with you. But your personal normal may not be what average is. My medication sends me hypo within 2 weeks of taking it as prescribed.

 

My first endocronologist told me to medicate how I needed to to feel normal. Her prescribed 10 mg was too much for me. After some experimenting we agreed with 7.5. Then I moved and have yet to find a doctor that will listen to me. I had my body for 39 years before it went haywire. I think I know how normal feels. I had one doctor tell me that "most people like the feeling of having more energy" Oy!

 

So now I self medicate. I end up with a lot of med left over, my blood tests come back not normal, but I don't care.

 

You are going to have to do what is best for you. A good doctor will listen to you. Keep trying until you find one. But keep in mind that often times doctors will only play by the numbers. And I've heard that some doctors do not order the correct thyroid tests that checks all the T numbers (1-4). Request them.

[Angel]

Could I hi-jack for a moment? I could have written part of your post, though I haven't been diagnosed yet. I'm currently in the process of trying to figure out what's going on with my body. I have almost all symptoms of hypothyroid. Blood work done in Sept said ok, but if I'm feeling like crap.

 

You said your TSH fluctuates between 3 and 7? Is the reverse true for thyroid, a high number means a low thyroid? I assumed that a low number on the scale meant a low thyroid. What is the normal range for a thyroid?

 

I'm going to see if the library has that book.

 

Thanks!

[runamuk]

You said your TSH fluctuates between 3 and 7? Is the reverse true for thyroid, a high number means a low thyroid? I assumed that a low number on the scale meant a low thyroid. What is the normal range for a thyroid?

 

 

I'm not sure what the numbers mean, but I think that the higher the number the lower the amounts of thyroid hormone is being produced (I really need to educate myself).

 

I wish I could switch doctors easily. We're a military family and we're limited in which doctors we can see. Unfortunately, the doctor I'm going to see is the one that told me "numbers don't lie". I've been trying to see another doctor on the team, but I'm being discouraged from seeing anyone but my PCM.

[Ravin]

A high TSH means low thyroid. TSH is Thyroid Stimulating Hormone, iirc, the hormone that your brain sends to the thyroid gland to tell it to make more thyroid hormone. If it is high, it usually means your thyroid levels are low. The direct tests of thyroid levels can give the Dr. a more complete picture of what is going on.

 

It is, from what I understand, normal and typical for other hormone changes to affect thyroid levels. These include the hormonal changes associated with pregnancy, postpartum, nursing, weaning...I actually went hyper on my med postpartum with DD, because my thyroid gland temporarily kicked in. I recall having TSH checked monthly during pregnancy. When not pregnant/postpartum, I keep stable so that it only needs a check every six months to a year. Currently I am on a lower dose than I used to be--.075 mg. I've been on as high a dose as .15 mg. I've also had periods when I was off meds, to my own detriment. :glare:

 

Of course, the underlying cause of your thyroid problem is probably different for mine--which runs in my family and shows up around puberty (I was diagnosed at age 11). I did have one doctor who did an ultrasound of my thyroid, last year in fact which no doctor had previously done. It turned up normal, but it's one test you might ask about if they haven't done anything but check your TSH levels. A full thyroid hormone screening and an ultrasound may be in order.

[Jean in Newcastle]

One thing you can do is to take Selenium (a mineral supplement). It supports your thyroid. My dr. told me that I could take it with my thyroid medicine. The standard dose is 100 mcg.

[Angel]

Thanks. That means that I am not on the low end like I thought. My FreeT4 was .82 and TSH was .79 and FreeT3 was 2.8

 

Do any of you knowledgeable ladies know what symptoms mimic thyroid?

[Sue G in PA]

Ask dr. to take a full thyroid panel, not just TSH. It only tells part of the story. Textbook normal TSH is btwn. .5 and 5.0...but I know that I feel terrible if mine is any higher than 3.0. I feel best when it is near 1.0. My dr. hesitated in increasing my dose, but I made her do it b/c I felt so terrible. I think I need a dosage increase now...I am exhausted. Soy is bad for thyroid, so make sure you are not getting increased amounts of soy in your diet. Most dr.'s don't look at anything but the numbers so try to find one that really listens and asks how you are feeling...not just rely on numbers. Good luck.

[The Governess]

Thanks. That means that I am not on the low end like I thought. My FreeT4 was .82 and TSH was .79 and FreeT3 was 2.8

 

Do any of you knowledgeable ladies know what symptoms mimic thyroid?

 

I am researching all of this as well! I recently had some blood work done on my thyroid; my T3 was low but everything else was very normal. I am seeing a natural doctor and through some bloodwork she found that my ferretin (iron stores), vitamin b12, and vitamin d3 were all very low. She thinks that once we restore these to normal levels my thyroid function will go back to normal.

 

Low iron stores also produce many of the same symptoms of hypothyroidism: fatigue, feeling cold, difficulty concentrating, racing heartbeat.

 

Low b12 can cause fatigue, pale skin, depression, fast or irregular heartbeat, faintness/breathlessness, hair loss, heavy periods.

 

I've also read that your body needs adequate iron stores to convert T4 to T3, which is why low iron can contribute to hypothyroidism. But on the other hand, hypothyroidism can make it more difficult for your body to absorb iron, leading to low iron stores. B12 is also suspected to play a role in T4-T3 conversion. It is a delicate balance!

 

Most doctors don't test ferretin levels, and won't notice that your iron is low until your blood count shows that you are anemic. But you can have symptoms well before you get to this point.

 

It seems like a good idea to me to get your b12 and ferretin levels checked before going on a thyroid hormone supplement. If the test results show they are low, improving your levels may get your thyroid functioning normally again. I'm hoping this will work for me!

[Amy in KS]

Look to make sure you aren't eating anything with soy additives (it's in lots and lots). Soy destroys your thyroid.

[Wyndie]

I had to switch to an "out of service" PCM b/c the doctors on base here wouldn't listen to me. The co-pay is still small if you go out of service and it's worth it to find one that listens.

[runamuk]

I had to switch to an "out of service" PCM b/c the doctors on base here wouldn't listen to me. The co-pay is still small if you go out of service and it's worth it to find one that listens.

 

I'm looking into doing just that. I've had nothing but problems with the providers in this clinic since moving here two years ago. Everyone else's experiences with their doctors has encouraged me to look elsewhere for my care.

 

Thank you for the info on soy, B12 and selenium. I learned something today. :)

[Jann in TX]

Many people cannot use Synthroid--or it does not work effectively in them--it is a 'square peg in a round hole' fix.

 

Our 'wonderful' FDA has really blocked up the sources in the USA for dessicated thyroid (mainly Armour). It is VERY hard to find.

 

My dd is hypo thyroid and Synthroid did not work for her... and now we are struggling with some compounded stuff from the pharmacy... and will probably give ordering out of the country a try---until the US production can get back on course.

 

My dd has TERRIBLE side effects if her TSH goes above a 1.5 If she goes over a 3 she mimics being bi-polar and is suicidal!

 

My sister has Hashimotos. Her TSH went from normal to over 30 in just a few weeks... she is always struggling to keep hers in check and she is also having supply problems. Her Dr just tried to switch her to Synthroid (what FDA prefers people to use--for POLITICAL reasons) but it made her so much worse--dramatic weight gain, moodiness, feet swelling.... so she is switching back to the natural stuff--stuff people have been using for over 100 years without the many side effects of Synthroid!

[cat in black]

I have been battling thyroid disease since a thyroid storm in 1991. I had Radioactive Iodine Therapy in 2000. If I had been allowed to educate myself before being rushed into this treatment, I never would have done it. Change doctors until you find one who will listen to you and let you participate in your own care. I was a slug on the couch for years until I found the right doc. To educate yourself, check out Mary Shomann's website. I believe it is

thyroid.about.com

(although it could be about.thyroid.com)

You can search for Mary Shomann and thyroid find it.

For what it's worth, Synthroid and Levoxyl did nothing for me. I did not improve until I started Armour Thyroid. It's hard to find in the US now, but I found a compounding pharmacist who makes it for me.

[mom2koh]

Request a full panel. I know that I am asymptomatic at hyperlevels. My tsh actually needs to be around .2! But, I had a wonderful endo who realized that. Now I have horrible insurance. When my new pcp said I didn't need an endo. But, I demanded. The endo in the insurance said I didn't need to be in her care until she got back my thyroid panel and my glucose challenge. Don't forget that those of us with hypo-thyroidism also have an extremely high chance of getting diabetes. Once one thing in the auto-immune system goes everything else is at a much higher risk. Maybe something else is going on to make your numbers rise.

 

I have also adjusted my diet and that seems to be helping (actually took out gluten as celiac is an auto-immune disorder). Soy is a big problem but I was told by my good doc that small amounts are OK. Just don't consume it within 4 hours of taking synthroid. Also, avoid any vitamins with iron in them within 4 hours of taking synthroid. If you are using the generic form then ask for the name brand. I go symptomatic on the generic. Another culprit is flouride in toothpaste so don't brush your teeth around the time you take your medicine.

 

Good luck and sorry about spelling errors I have a sick kid in my lap so I am typing one-handed. ;)

Edited February 20, 2010 by mom2koh

[Cortana]

I am hypo, ds is hypo and my mom is a 15 year thyroid cancer suvivor (go mom!!!).

 

Testing TSH is not enough, free T4 and free T3 have to be tested along with the TSH. Combined, these tests will tell you not only how much thyroid is in your system but also how well your body is using it. Even if your TSH is in the normal range, your T4 and T3 can be off and keeping you from feeling well.

 

Also, in 2003, the American Association of Clinical Endocrinologists recommended that the normal range run from 0.3-3.0, there is still disagreement about whether this is a necessary change or not.

 

My thyroid is stable right now but I can tell when it's off even a little. I need to have my retested again, too.

 

Press them to give you a referral to an endocrinologist. The average general/family practitioner is not educated/practised enough to acurately diagnose and treat thyroid disorders. My mom went through years of fighting with her practitioner to take her seriously about her symptoms and it wasn't until the tumors started forming that mom finally got a referral.

 

I hope you are able to get your referral and get to a dr that can help you.

[Ravin]

FWIW, levothyroxine (brand name synthroid, I always get generic because it's inexpensive) works for plenty of people. It's what my mom and grandma and I have always taken, and it's effective. I would consider going to the (much pricier) natural alternatives only if it didn't work.

[Jann in TX]

This is one of the 'political' issues and reasons why Armour and other natural supplements are hard to find in the US...

 

Armour is less than $30 per month FULL PRICE for most dosages.

 

More money is to be made with the synthetic stuff--and the drug makers have tried to squash the smaller independent natural thyroid supplement makers in order to 'switch' customers to their SYNTEHTIC product. I HATE big pharmaceuticals and the FDA's corruption.

[Ravin]

Generic levothyroxine is $4 for a 30 day supply or $10 for a 90 day supply at walmart. I'll be the first to agree that name-brand Synthroid is ridiculously expensive. That said, she's probably already on generic levothyroxine, that's what the military always gave me.

[mom2koh]

I pay out of pocket for the brand name synthroid and at 200 mcgs it's 30.75 a month. I don't find that overwhelming. From experience I can tell you that when I switched from generic to brand my dosage did drop and I began to feel better. I have met some others with the same experiences. It's all personal preference but this was suggested by a friend with the same issues and when I switched I saw some relief.

 

I would love to have the armour but my doc will not prescribe it.

 

Another thing to look at is in some cases people also need a T3 supplement. So do press for a full panel screening and a referal to the endo.

 

:grouphug: