# Help I have questions



## kwitts81 (Nov 16, 2010)

Hi My name is Kristina back in 2001 a doctor told me my thyroid levels were a little high and I was started on 5mcg synthroid. This when on for a year with no changes I stopped taking the medication as it was not doing anything and I felt the same and just thought the doc was like oh its a little off heres a pill bye bye now. Well it has been 9 years and no meds randomly docs will check my thyroid since I state that it has been off in the past. The highest my TSH has ever been was 7. Well just last month I was not feeling well very tiered, weak, tons of muscle cramps even while not exerting the muscle. This went on for a week until I could barely climb the stairs I couldnt play with my kid I couldnt fold laundry even signing my name hurt so I went to the doctors now in a panic because I couldnt take it anymore I told them I didnt know what was wrong but felt like I was dying and told them my sympotms. They did a bunch of different blood tests and ultimately one was my thyroid well my thyroid was off.. my TSH level was 181 on 10/22/10, back on 1/15/10 when I had a physical done it was 5.11. I am wondering if this concerns anyone my doctor seems to act like it is no big deal he says he doesnt feel any thing in my neck and just started my on 75MCG levothyroxine. I felt like wow this is making me feel better for a week and now I am feeling horrible again. I am just wondering from anyone else what I should do I feel like this is more severe and the doctors should have more concern, run some tests see why this is fix me you know instead they are just here is a low dose of pill see you back in 3-6months. I didnt get my period in Oct no one seemed to take notice when I told them I am trying to have a baby so this is really disheartening. I feel like obviously something is wrong when Im slightly off and then 9mo later I am 36x the norm for my clinics TSH lab levels. Please help me I am concerned and would just like to hear from other people in a somewhat similar situation who have been through it. When I bring things up to the doctors they make me feel like I crazy and I should just relax and take my pill do they not care or am I over worried. Sorry about all my spelling and grammar errors!


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## McKenna (Jun 23, 2010)

Hi and welcome!

TSH of 181. Wow! What was the range? I don't understand the doctor's nonchalant attitude, since that is really high.glow Did you have any other labs done? Free T3 and Free T4? Or antibodies?

How long have you been on the levothyroxine? It takes a few weeks to build up in your system.


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## kwitts81 (Nov 16, 2010)

No, no other labs that have anything to do with my thyroid. I started the levothyroxine on the 22 of oct. so I dont know maybe it hasnt been enough time or maybe I need a higher dose.


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## Andros (Aug 26, 2009)

kwitts81 said:


> Hi My name is Kristina back in 2001 a doctor told me my thyroid levels were a little high and I was started on 5mcg synthroid. This when on for a year with no changes I stopped taking the medication as it was not doing anything and I felt the same and just thought the doc was like oh its a little off heres a pill bye bye now. Well it has been 9 years and no meds randomly docs will check my thyroid since I state that it has been off in the past. The highest my TSH has ever been was 7. Well just last month I was not feeling well very tiered, weak, tons of muscle cramps even while not exerting the muscle. This went on for a week until I could barely climb the stairs I couldnt play with my kid I couldnt fold laundry even signing my name hurt so I went to the doctors now in a panic because I couldnt take it anymore I told them I didnt know what was wrong but felt like I was dying and told them my sympotms. They did a bunch of different blood tests and ultimately one was my thyroid well my thyroid was off.. my TSH level was 181 on 10/22/10, back on 1/15/10 when I had a physical done it was 5.11. I am wondering if this concerns anyone my doctor seems to act like it is no big deal he says he doesnt feel any thing in my neck and just started my on 75MCG levothyroxine. I felt like wow this is making me feel better for a week and now I am feeling horrible again. I am just wondering from anyone else what I should do I feel like this is more severe and the doctors should have more concern, run some tests see why this is fix me you know instead they are just here is a low dose of pill see you back in 3-6months. I didnt get my period in Oct no one seemed to take notice when I told them I am trying to have a baby so this is really disheartening. I feel like obviously something is wrong when Im slightly off and then 9mo later I am 36x the norm for my clinics TSH lab levels. Please help me I am concerned and would just like to hear from other people in a somewhat similar situation who have been through it. When I bring things up to the doctors they make me feel like I crazy and I should just relax and take my pill do they not care or am I over worried. Sorry about all my spelling and grammar errors!


Oh, you poor dear!! Yes; you do need to try and relax and stick w/ your levothyroxine. The only thing that concerns me is that right now you should be getting labs every 8 weeks and doc should Rx your Levothyroxine up or down as needed until you feel great!

Most of us feel best with the TSH @ 1.0 or lower. Frees T4 and Free T3 above mid-range.

You may need more tests. Here is what I recommend and if this doc won't do labs for you every 8 weeks, please find one that will. You don't need to suffer.

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/unders...s/thyroid.html

Welcome to the board; I am so sorry you have suffered so much.


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## GD Women (Mar 5, 2007)

Hi Kristina. Yes TSH 181 is high but there could be reasons. Were test done at the same lab or something could have interfered with test at the Lab producing a false high level. The important issue would be if if Labs came back each time that high or thereabouts. Steady levels are a important factor.

When trying to have a baby it is suggested that TSH should be steadily between 1 and 2. Once steadily there then pregnancy is ok. However you want to go low and slow with dose and not to rush dosing. You don't want to overshoot goal level or your levels could ping pong and take longer to get to your goal level prolonging your getting pregnant.

Be patient, follow your doctors lead, after all he is the one with the long expensive education, and, working with each other doesn't hurt either.

I'll be anxiously waiting for the good news of your pregnancy.


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## CA-Lynn (Apr 29, 2010)

Kristina,

Take a look at your TSH and see if it was measured in uIU/mL.


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## kwitts81 (Nov 16, 2010)

Thx everyone for your posts I am going to make an appointment here in a week and will see if they can do more labs and see if my dose is good. I really appreciate all help Thank you so much I will give more info when I have it Thx again


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## kwitts81 (Nov 16, 2010)

So I went to the doc again and my TSH was down to 83.9 My thyroid is enlarged but they said it was to expected. Free T4 .60 Free T3 2.2. I am now on 100 mcg thyroxine.


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## Andros (Aug 26, 2009)

kwitts81 said:


> Hi My name is Kristina back in 2001 a doctor told me my thyroid levels were a little high and I was started on 5mcg synthroid. This when on for a year with no changes I stopped taking the medication as it was not doing anything and I felt the same and just thought the doc was like oh its a little off heres a pill bye bye now. Well it has been 9 years and no meds randomly docs will check my thyroid since I state that it has been off in the past. The highest my TSH has ever been was 7. Well just last month I was not feeling well very tiered, weak, tons of muscle cramps even while not exerting the muscle. This went on for a week until I could barely climb the stairs I couldnt play with my kid I couldnt fold laundry even signing my name hurt so I went to the doctors now in a panic because I couldnt take it anymore I told them I didnt know what was wrong but felt like I was dying and told them my sympotms. They did a bunch of different blood tests and ultimately one was my thyroid well my thyroid was off.. my TSH level was 181 on 10/22/10, back on 1/15/10 when I had a physical done it was 5.11. I am wondering if this concerns anyone my doctor seems to act like it is no big deal he says he doesnt feel any thing in my neck and just started my on 75MCG levothyroxine. I felt like wow this is making me feel better for a week and now I am feeling horrible again. I am just wondering from anyone else what I should do I feel like this is more severe and the doctors should have more concern, run some tests see why this is fix me you know instead they are just here is a low dose of pill see you back in 3-6months. I didnt get my period in Oct no one seemed to take notice when I told them I am trying to have a baby so this is really disheartening. I feel like obviously something is wrong when Im slightly off and then 9mo later I am 36x the norm for my clinics TSH lab levels. Please help me I am concerned and would just like to hear from other people in a somewhat similar situation who have been through it. When I bring things up to the doctors they make me feel like I crazy and I should just relax and take my pill do they not care or am I over worried. Sorry about all my spelling and grammar errors!


Hi there!! I hate to hear this story and I am so sorry. I "am" glad you are on75 mcg. of Levoxyl but the rest of the story is not good news.

Your doctor should be seeing you every 8 weeks to titrate your Levoxyl upward (or downward) as needed based on clinical evaluation AND TSH, FREE T3 and FREE T4 lab tests.

Also, I strongly recommend antibodies' tests. You need to know "exactly" what is going on w/your thyroid.

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/unders...s/thyroid.html

Do you have a goiter? Do you have pain in your thyroid/neck/clavical area? Trouble swallowing?

Here is a site to help you understand thyroid lab tests and why the FREES are the better choice.

Understanding thyroid lab tests.....http://www.amarillomed.com/howto

For most, TSH should be @ 1 or sometimes less for conception. That is what I read. I am sure it varies from individual to individual. And my old lady advice is to get antibodies' tests before you get pregnant because a lot of this stuff is genetic.


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## daisydaisy (May 12, 2010)

my endo says she likes to see it around 2.3TSH. After a week you could have levelled off on your meds a bit and need a bit more. But...it could be there your body is trying to recover from all the damage the high tsh caused and it could take a bit of time.


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## Andros (Aug 26, 2009)

kwitts81 said:


> So I went to the doc again and my TSH was down to 83.9 My thyroid is enlarged but they said it was to expected. Free T4 .60 Free T3 2.2. I am now on 100 mcg thyroxine.


How are you doing on the 100 mcg. of thyroxine? When do you go get labs again. We need the ranges with the results please? Different labs use different ranges.

Have you had an uptake scan? (RAIU)


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## kwitts81 (Nov 16, 2010)

I keep thinking im feeling better and then all of a sudden im feeling awful again, right now ive been feeling nauseas because it feels like something is tigh around my throat i think im gonna need to get back in after christmas for some new blood draws


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## Andros (Aug 26, 2009)

kwitts81 said:


> I keep thinking im feeling better and then all of a sudden im feeling awful again, right now ive been feeling nauseas because it feels like something is tigh around my throat i think im gonna need to get back in after christmas for some new blood draws


Have you had RAIU? This is important if you feel tightness in your throat. And, yes...............please get in to see your doctor and let us know how you are doing and what he/she has to say on your behalf.


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## kwitts81 (Nov 16, 2010)

My newest results 
FT3=2.0
FT4=0.36
THS=78.5
Levothyroxine 1.75mcg


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## HeidiBR (Apr 4, 2010)

Is that correct - your THS is 78.5?

Do you have the ranges for each of these labs? This is very important, so that others way smarter than I can help you out.


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## kwitts81 (Nov 16, 2010)

Yup it is correct! It seems to go down and then back up a little bit. But in Oct it was 181.

I know the ranges for TSH at fairview is .4-4.5
not sure of the others right now tho.


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## kwitts81 (Nov 16, 2010)

My TSH is now 22 and my Levo-is 200mcg


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## Andros (Aug 26, 2009)

kwitts81 said:


> My TSH is now 22 and my Levo-is 200mcg


Have you not changed doctors? I can't imagine a doctor keeping you in this bad place for this long. I find that unconscionable.

You don't have labs for FREE T3 or FREE T4? I suspect you need T3.

Glad to hear from you but very very sad to hear that after all this time your doctor has not addressed your needs re getting that TSH down below 3.0.

Most of us feel best w/ TSH @ 1.0 or less.


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## kwitts81 (Nov 16, 2010)

TSH	22.60 range 0.4 - 5.0	mU/L
Free T3	2.7	2.3 - 4.2	pg/mL
T4 Free	0.87	0.70 - 1.85	ng/dL


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## kwitts81 (Nov 16, 2010)

I didn't mean to send that just yet but the above are my current levels from 8-4-11 and I just found out through home pregnancy test that im pregnant. I go in on the 23rd to talk about pregnancy stuff and on the 24th for thyroid stuff. Im very nervous about miscarriage and something being wrong with my baby. right now im on 200mcg levothyroxine. Any words of advice?


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## bigfoot (May 13, 2011)

Congratulations!

Glad to see your TSH has dropped so much! I can't imagine how it felt when it was sky-high.

Have they ever explained WHY your TSH has been so high? Any theories from the docs? Have they done other tests? Ultrasound, biopsy, TSI, etc.?

Did they ever mention doing surgery to remove your thyroid since your levels are so hard to control?

Good luck with your appointments -- make them work for their money!


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## kwitts81 (Nov 16, 2010)

We did an ultrasound they said it was enlarged but nothing else to worry about otherwise no I feel like they dont care all that much. But hopefully all will work out soon thanks for the reply.


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## bigfoot (May 13, 2011)

Sorry to hear the docs don't seem to care. Always a few bad apples to spoil the bunch!


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## kwitts81 (Nov 16, 2010)

Im now at a TSH of 8.somethin and they raised my thyroxine to 225mcg


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