Thyroid Questions: Underactive? Overactive?

[srhs]

Tell me your experience with hypothyroidism. I've been talking about this a lot lately to DH, and he reminded me I've brought this up off and on for 5 years now! Yes, I know and I am pregnant and have a baby. But I am WAAAAYYY too fatigued for my age and circumstances and it's been going on WAY too long. I have many of the other symptoms too. I want to figure this out so I can be the mom I want to be to 2 under 2!

I made an appt. with my general doc who told me I am just depressed and pregnant.

I asked my OB office to test my thyroid in the CBC. It's in the normal range but at the very bottom of it.

I called an endocrinologist, but they won't see me without a referral.

Even if I find one who will see me, can I try meds while preg? I read last night hypothyroidism is linked to birth defects so I am feeling some urgency that my practitioners are not!

I'm afraid to try anything herbal while pregnant. Are there diet changes I can make?

Sorry for the LONG! I don't know who else to ask!

[lablover]

Do you have your lab results? Is it your T4 that is at the bottom of the range? Do you have your TSH?

If you are hypothyroid, yes you can be on medication, in fact you need to be on medication.

And by the way, depression is a symptom of hypothyroidism.

[srhs]

Do you have your lab results? Is it your T4 that is at the bottom of the range? Do you have your TSH?

It's the TSH at the low end (0.45*). While I asked to have the thyroid tests added, there's no "T4" on my results. Would that be under another name?
I have my actual results. Docs always just tell me "normal," but I always ask for a copy for my files directly from the lab. I just went through all my results from last preg, and it looks like thyroid is not included in any of them. I had ignorantly thought it was in the reg. CBC.

*eta--I just read online .5 was considered the low end of normal until '02 when it changed to .3. Interesting.

[o_mom]

It's the TSH. While I asked to have the thyroid tests added, there's no "T4" on my results. Would that be under another name?

If your TSH is at the bottom of the normal range (0.5?) then you are close to hyperthyroid (overactive), not hypo. Without having a full panel, you can't rule out some other type of disfunction, but generally, a HIGH TSH indicates hypo, a LOW TSH is hyper.

[niccig]

Did they tell you what your TSH level is?
Some doctors think anything under 5 is normal, but the American Association of Endocrinology says anything between 0.3 and 3 is normal range.
Also, other tests together can tell an endocrinologist what could be going on. There's a simple blood test for antibodies of Hashimotos, which is autoimmune that affects the thyroid. Has your Dr. run these tests?

My TSH level was nearly 4 and I was crazy woman. The endocrinologist I was seeing for thyroid nodule kept saying my levels were normal, so no medication. I was interviewing thyroid surgeons has had to have the nodule removed, and one surgeon told me I needed medication as I was over 3.0. I've been on medicine for a year now, and with my new endocrinologist that LISTENS to me, we've discovered that I'm best with TSH between 1.0 and 1.5. If I start to get up close to 2.0, I start having symptoms again.

Do you have PPO insurance. If yes, you can go to any specialist without a referral. I would start looking here for a thyroid specialist or call local endocrinologists and find out how much they work with thyroid patients. From my experience, not all endocrinologists know enough about thyroid conditions http://www.thyroid.org/patients/specialists.php

If you don't have PPO, go see your regular Dr, with a name of an endocrinologist and DEMAND a referral. If they won't give you one, go to another Dr to get a referral.

Don't take the "you've got kids so of course you are tired" line. Demand to see someone and demand that they keep working on fine tuning medication if you still don't feel fine. A friend of mine was told the "2 kids under 4 line" by her endocrinologist, she told me and I got her to see my endocrinologist who LISTENS to you about how you are feeling, and doesn't just look at blood test results. He adjusted her medication, and she feels much better.

It's also very important to have correct thyroid levels during pregnancy. My endocrinologist always tells me that if I get pregnant again, my first phone call is to him and the 2nd is to the OB, and he will check my thyroid levels monthly during pregnancy - but I do have thyroid issues.

HTH and hope you can get to see an thyroid specialist soon.

[srhs]

... a HIGH TSH indicates hypo, a LOW TSH is hyper.
Well don't I feel like a NERD! Should I change my post title and info?


eta--I changed the title. I wanted to put "Inactive? Deactive? Reactive? HECK, I don't know!"

[niccig]

If your TSH is at the bottom of the normal range (0.5?) then you are close to hyperthyroid (overactive), not hypo. Without having a full panel, you can't rule out some other type of disfunction, but generally, a HIGH TSH indicates hypo, a LOW TSH is hyper.

Yeah this.


I would get more tests by an endocrinologist. Hashimotos is thyroid auto immune and you can cycle from being HYPER (too much thyroid hormone) to HYPO (too little thyroid hormone). My friend has this. She had hypothyroidism and regular dr. was prescribing medicine. Her levels got to 6.0, crazy crazy high. I got her to see my endocrinologist and he adjusted medicine and ran extra tests. A simple blood test showed antibodies for Hashimotos. It means that she has to have more check ups to check her levels so they can adjust if she swings from HYPER to HYPO. It's a simple blood test that her general dr. never ran. She was POed when she found out she had it and had pregnancy with Hashimotos and no one knew.

There are other thyroid conditions. Most are easily treated with medication. The difficult part is getting a dr. that diagnoses and treats it. I was reading that it's one of the most under diagnosed disorders.

If you do need a referral, would your OB do it if your general dr. won't???

[lablover]

Ah - when you TSH is low, that indicates hypERthyroidism. When you TSH is low, your T4, which is the measur of actual thyroid hormone, is usually high. Which means you are producing excess thyroid hormone. I think that is fairly typical to have low TSH at the beginning of pregnancy. I am hypothyroid and controlled with meds, but at the beginning of both of my pregnancies my TSH was low (indicating I was overmedicated). But my medication wasn't reduced because the doctors said it was common at the beginning of pregnancy, and my the second trimester my TSH had gone back in the normal range. You may ask to get another test around the second trimester to track it.

Also, keep on top of it, especially after birth. After both pregnancies my thyroid levels whacked out. I wasn't expecting it the first time because I thought pp thyroid problems occurred in those without previous thyroid disorders. I went hyperthyroid for a few months after the birth, with my medication being lowered every month, and then bam, my TSH shot to 56 and I was in horrible condition. Thankfully after the second birth I was on top of it and after a few months being hyper, the second I started to feel hypo, before the tests showed it, I found a doctor that brought my medication back up fast.

[srhs]

niccig--You made lots of great points; I didn't want to do a huge quote.

My ins doesn't require a referral but my the endocrinologist does. Grr. I can call some others though to see if they're all the same. I'll start with your link and look at my ins. Thanks!

No, I've only had the TSH, which I only got at my own request. My gen. doc blew me off, although she did "feel" my thyroid.
(5 years ago, they tested my thyroid and called me to tell me it was "fine" but I had mono.)

Yes, yes, someone to LISTEN would be fabulous.

[niccig]

Well don't I feel like a NERD! Should I change my post title and info?

No. You can be under or over and have similar symptoms. I'm hypothryoid (underactive) because of surgery. When my dr. was trying to find right levels of medicine, he over corrected my levels. He increased it only by a little bit, but I went hyperthyroid. And I had insomnia, tired, cranky, irritable, just like when I am hypothryoid.

The thing is, everyone reacts differently to levels of thyroid hormone. My friend who's TSH levels were 6.0 was tired but up and doing things. If I got to 6.0, I would be asleep all the time, because when my levels were 4.0 I could barely get out of bed.

The reason I love my endocrinologist is that of all the dr.s I interviewed he was the most realistic. He told me that it could take some time to find the right level of medication for me, and that that level would change over my life, so I would have to keep on top of regular blood checks, and taking my medicine correctly. But that he would work with me to get me feeling as well as possible. I know from trial and error with the medicine levels that I currently am best when TSH between 1.0 and 1.5. My levels were closer to 2.0, still within normal and I told my endo. that still having troubles and he adjusted the medicine. All of a sudden, I'm feeling good again.

All the other. endocrinologists I saw were like "take 1 pill, you'll be fine, easy peasy". I don't think they would have taken the time to fine tune medicine levels that were within normal range, but still not enough for me.

[o_mom]

Do you have PPO insurance. If yes, you can go to any specialist without a referral. I would start looking here for a thyroid specialist or call local endocrinologists and find out how much they work with thyroid patients. From my experience, not all endocrinologists know enough about thyroid conditions http://www.thyroid.org/patients/specialists.php


The referral most likely has nothing to do with insurance. My Endo won't take a patient without a referral from your PCP - nothing to do with insurance, they just don't allow self-referrals. Of course he up and died on me so I have to find someone new now (I really liked him too :().

[niccig]

niccig--You made lots of great points; I didn't want to do a huge quote.

My ins doesn't require a referral but my the endocrinologist does. Grr. I can call some others though to see if they're all the same. I'll start with your link and look at my ins. Thanks!

No, I've only had the TSH, which I only got at my own request. My gen. doc blew me off, although she did "feel" my thyroid.
(5 years ago, they tested my thyroid and called me to tell me it was "fine" but I had mono.)

Yes, yes, someone to LISTEN would be fabulous.

I would call around and see if you can find someone. What you're experiencing could be normal for thyroid with pregnancy. But if you have any concerns, go see someone to check.

Thyroid issues were on the radar for me, because my grandmother was hypothyroid. I got tested pre-pregnancy and everyone said I was fine. I didn't have troubles until after DS was born. So if you're fine now, just keep in mind that post-partum thyroid issues are really really common. Several of us here on the boards and several people I know IRL, all had issues post-partum. If you find a good endocrinologist now, you'll have them to go see after the baby is born.

And as for doctors that LISTEN. I'm done with getting blown off when I mention something. Too many other good doctors out there. If I had stayed with my original endocrinologist, I probably would be as loopy as ever by now.

[srhs]

From my experience, not all endocrinologists know enough about thyroid conditions http://www.thyroid.org/patients/specialists.php

Okay, closest doc on that list is 90 minutes from me BUT is in my ins. Not so convenient for a SAHM but doable if he will really help me. How often do you see them in the beginning? Obviously, I can get my labs drawn here, but do you see your docs monthly (at least when preg)?
Trying to decide if I should start with someone local or with someone from that site.
I will get the referral, if necessary. I will beg my OB or find a new gen prac or whatever. I'm used to that game. Just keep asking until you get the help you know you need, right? That's what I learned during my BFing woes.

[niccig]

Okay, closest doc on that list is 90 minutes from me BUT is in my ins. Not so convenient for a SAHM but doable if he will really help me. How often do you see them in the beginning? Obviously, I can get my labs drawn here, but do you see your docs monthly (at least when preg)?
Trying to decide if I should start with someone local or with someone from that site.
I will get the referral, if necessary. I will beg my OB or find a new gen prac or whatever. I'm used to that game. Just keep asking until you get the help you know you need, right? That's what I learned during my BFing woes.

For me, but remember I also had thyroid surgery, I went once a month for several months. It took a while to get right medicine levels. Now I go every 3 months or so. I call to get blood work order, have test, then see Dr. the following week so he has the blood results.

90mins is a long drive. I have done that to see a dr. though. You could do and see if there is an issue with your thyroid. If not, then you don't need to go back unless things change. You could call and ask if they know of other dr.s they would recommend near you. Or you can find a listing of local endocrinologists and call and see how much they deal with thyroid issues. I also visited a few doctors before I found the dr. I have now.

Actually my dr. isn't on that list of specialists. They have 2 drs. listed at USC, but I couldn't get into see them, so I saw another dr. in their endocrinology section. He trained under the 2 dr.s that were on the list, and he's been great. So I didn't swap to one of the other dr.s. So, a dr. doesn't have to be on that list to be good.

[maiaann]

I was diagnosed hypothyroid in my mid-20's, right after my first DD was born. I suffered from SEVERE post-partum depression and after rounds of anti-depressants they wanted to put me on Lithium. Lithium sometimes has a tendency to jack up a healthy thyroid, so they tested my thyroid before prescribing it. It was at 6.xx and they put me on a low dose of levoxythyroxine. It took a few attempts to get my dose corrected, but I've been on medication since 2004. They usually watch your thyroid very closely in pregnancy. My last pregnancy I needed an increased dose of medication, but almost days after her birth I was irritable/nervous and as soon as they lowered my dose back to normal I felt better again.

Like some of the other posts here, I know my thyroid level has a lot to do with how I'm feeling. Depression is the first symptom I experience when it starts to go haywire again. Dry skin/hair is another biggie for me. Fatigue is a common symptom, but I think almost all women with a bit of stress in their lives (children!) experience fatigue on a daily basis.

[julymommy]

I had all the classic symptoms of hypothyriod, but my numbers weren't "right" according to my primary care dr. I spent about two years going to different doctors - they would look at all my symptoms and say - "classic case," then my lab results would come back, but wouldn't be in the range they considered abnormal. Finally, I found a doctor who looked beyond the lab results. I've now been on thyroid meds for a year and a half - I feel better than I have in years. I think, for some people, normal isn't textbook normal. If you feel like things are off - look around for someone who will look at symptoms and will listen to you, and who doesn't just look at numbers. Just my two cents. Good luck.

[tmarie]

Funny you should post this as I was at the doctor today to get my tsh rechecked. I have been convinced I had a thyroid problem for several years but could never get in to see an endocrinologist. My numbers were always within the guidelines. I finally found a new internist who listened to all my symptoms and family history, and gave me a referral. My numbers were still within the guidelines but they discovered I have mild goiter, which long story short can affect the functioning of your thyroid, and subclinical/mild hypothyroidism. They prescribed synthroid and I have been feeling SO much better, overall. I have so much more energy. When I think of the fatigue I suffered needlessly for so long. I have also lost a bunch of weight in the two months I've been on it---until I started the synthroid I had only lost five pounds since the birth of my dd in June (and she weighed more than five pounds!).

I have not yet educated myself on levels and numbers, so I can't add much there. I will say this: find a good endocrinologist and don't rely on your internist to prescribe synthroid if you need it. It is a very sensitive drug and we are still tweaking my dosage. Good luck!

tmarie

[srhs]

Thanks to everyone for all the good info! This actually gives me HOPE, KWIM?
I have several of the symptoms and have for years. My number is in the ok range but so close to problematic. If I have a medical reason, then I'm not just lazy, can't get it together, etc. Also, it's been going on even pre-preg, so I know it's not just preg-related, although I understand could be exasperating.
Now, I just need to find a doc who will listen and help me.

[niccig]

They prescribed synthroid and I have been feeling SO much better, overall. I have so much more energy. When I think of the fatigue I suffered needlessly for so long. I have also lost a bunch of weight in the two months I've been on it---until I started the synthroid I had only lost five pounds since the birth of my dd in June (and she weighed more than five pounds!).



I think I had thyroid issues but because levels normal, they never caught it until I had a huge nodule growing on my thyroid that eventually needed surgery. I too feel better than I have in years.
And yes to losing weight. My endo. said you can exercise every day for hours and if your thyroid hormones are off, you won't lose weight. I still need to kick the ice cream habit though!

[hellbennt]

i have hypothyroidism- have been on meds since 1997
and have had levels checked throughout pregnancies...
I LOVE:love5: my endo & travel an hour to see him (I moved) - I get my blood drawn locally and fax the results, etc- I have even had 2 sonograms locally and faxed the results...then when I have a visit we can discuss, etc...

[lizajane]

I had all the classic symptoms of hypothyriod, but my numbers weren't "right" according to my primary care dr. I spent about two years going to different doctors - they would look at all my symptoms and say - "classic case," then my lab results would come back, but wouldn't be in the range they considered abnormal. Finally, I found a doctor who looked beyond the lab results. I've now been on thyroid meds for a year and a half - I feel better than I have in years. I think, for some people, normal isn't textbook normal. If you feel like things are off - look around for someone who will look at symptoms and will listen to you, and who doesn't just look at numbers. Just my two cents. Good luck.

YES YES YES YES. except it was 3 years, or maybe more.

"normal" is not normal for everyone. FORCE your doc to dig deeper than the "normal" test results. i am subclinical hypo. my world has COMPLETELY changed since i started the meds.

[Hawkeyewife]

...she said that my T3 uptake was on the low side (20.7, normal is 27-40.7) but it is usually high in pregnancy and that I should go see an endo. I made an appointment with one for Tuesday (it's Friday afternoon). I am 10 weeks pregnant.

Any advice? I am planning a home birth but there seems to be a lot of other risk factors associated with hypothyroidism/hyperthyroidism that would not be favorable for a home birth (gestational diabetes, pre-eclampsia, low birth weight etc). I am going to worry all weekend!

[lizajane]

just realized this was an old post to which i already responded!