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Old 08-19-2008, 06:48 PM   #1
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Red face Just had to share...

I had blood drawn this morning to check my levels after being on levo for 5 weeks. I started feeling really run down this past week so I thought I would push to get checked before the 6 week mark.

I have been seeing an endo....he said I could either have my levels checked with him or have my family doctor do it...I went with my family doctor because I have been seeing him for 16 years and thought we could work together on my thyroid issues.

Here is the part that I just about went through the roof on....my appointment is Friday with the doc but his nurse was nice enough to leave a message for me and let me know my TSH level late this afternoon....she said I was in the gray area at the top of the range and that means I would not need any med adjustment....what was my TSH? It is 5.81!! Enough said!?!?!?

I need suppression therapy because of the PT I had and the nodule etc....endo said I should be at or near .3...it will be interesting to see what the doc has to say!! I did request FT3 and 4 which the endo did not do at my last appointment.

Just had to share this because I really couldn't believe it!!
Rhonda

 
Old 08-19-2008, 11:08 PM   #2
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Re: Just had to share...

Hi, RMB

Sorry, I could not understand what you said "she said I was in the gray area at the top of the range and that means I would not need any med adjustment....what was my TSH? It is 5.81"? It is normal or not?

I need suppression therapy because of the PT I had ---do you have hypoparathyroidism? how were you diagnosed with it?( because I think I would like to have parathyroid checed, too)

 
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Old 08-20-2008, 04:27 AM   #3
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Re: Just had to share...

Quote:
Originally Posted by cutejenny77 View Post
Hi, RMB

Sorry, I could not understand what you said "she said I was in the gray area at the top of the range and that means I would not need any med adjustment....what was my TSH? It is 5.81"? It is normal or not?

I need suppression therapy because of the PT I had ---do you have hypoparathyroidism? how were you diagnosed with it?( because I think I would like to have parathyroid checed, too)
Sorry if I was not concise enough. The nurse was saying that according to the lab ranges I am just outside of the lab range...I think she said the top of the lab range was 5.19. This is not normal. I am experiencing hypothyroidism.

PT-means partial thyroidectomy. I had half of my thyroid surgically removed.

Hope that helps..
Rhonda

 
Old 08-20-2008, 06:17 AM   #4
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Cool Re: Just had to share...

Hi RMB ~

Our stories are somewhat similar I had one enlarged, non-cancerous lobe removed fall 05. My 1st labs were 10 days after surgery with TSH of 4.79. That fell within NORMAL & I didn't know to QUESTION my Doctor. But SHE should of checked 5 MONTH old labs that showed TSH of 1.23, but she didn't so my 3.5 months of surgery induced hypo-h*** began I saw Doc those months, she'd comment how GOOD my SCAR looked, not thinking to hand me another lab slip

Do you have OLD LABS that show what TSH was previous to surgery???

Perhaps Endo would do a more effective job of leveling meds
Quote:
what was my TSH? It is 5.81!! Enough said!?!?!?
Y E S IDIOTS

 
Old 08-20-2008, 06:29 AM   #5
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Re: Just had to share...

Wow! I am new here and I am really surprised at how little the family docs, and some endos, seem to know about this. What is even more shocking is how little stock our feelings and symptoms hold. The doctors seem to be content with getting labs in the so called "normal" range, rather than making their patients feel better.

I hope your endo will help you get down to a more "normal" level.

DM

 
Old 08-20-2008, 06:44 AM   #6
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Re: Just had to share...

Quote:
Originally Posted by Suey77 View Post
Hi RMB ~

Our stories are somewhat similar I had one enlarged, non-cancerous lobe removed fall 05. My 1st labs were 10 days after surgery with TSH of 4.79. That fell within NORMAL & I didn't know to QUESTION my Doctor. But SHE should of checked 5 MONTH old labs that showed TSH of 1.23, but she didn't so my 3.5 months of surgery induced hypo-h*** began I saw Doc those months, she'd comment how GOOD my SCAR looked, not thinking to hand me another lab slip

Do you have OLD LABS that show what TSH was previous to surgery???

Perhaps Endo would do a more effective job of leveling meds

Y E S IDIOTS


Yes, it is amazing what different opinions each doctor will have. My TSH prior to surgery was .004. I was way hyper so even just getting back to a TSH of 1 would have been an adjustment for me. I now have experienced both ends of the hypo-hyper spectrum...TSH of .004 to 6.84. Now just to get to .3....that is my goal.

I will see what my family doctor has to say on Friday, if he is in the same limited mode of thinking I will for sure call the endo.

Rhonda

 
Old 08-20-2008, 09:24 AM   #7
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Re: Just had to share...

Oh, Rhonda, best of luck getting to that magical .3 mark! I can't BELIEVE they thought a TSH that high was acceptable. Craziness!!!

Say, how long do you have to wait before you can get bloodwork done? 4-5 weeks or something close to that? I'm curious to see how far my TSH has dropped since starting my meds a week and a half ago (after my TT and RAI treatment).
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Old 08-20-2008, 10:41 AM   #8
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Re: Just had to share...

Quote:
Originally Posted by RMB View Post
I had blood drawn this morning to check my levels after being on levo for 5 weeks. I started feeling really run down this past week so I thought I would push to get checked before the 6 week mark.

I have been seeing an endo....he said I could either have my levels checked with him or have my family doctor do it...I went with my family doctor because I have been seeing him for 16 years and thought we could work together on my thyroid issues.

Here is the part that I just about went through the roof on....my appointment is Friday with the doc but his nurse was nice enough to leave a message for me and let me know my TSH level late this afternoon....she said I was in the gray area at the top of the range and that means I would not need any med adjustment....what was my TSH? It is 5.81!! Enough said!?!?!?

I need suppression therapy because of the PT I had and the nodule etc....endo said I should be at or near .3...it will be interesting to see what the doc has to say!! I did request FT3 and 4 which the endo did not do at my last appointment.

Just had to share this because I really couldn't believe it!!
Rhonda
I completely understand and know what you're going through! I had my completion thyroidectomy as a result of cancer July 9th I started having severe hypo symptoms about 2 weeks post op. I suffered through it for a few days and said forget it and called surgeons office and they wouldn't do anything till my post op which was still 2 weeks away. I called my GP and went in and had TSH tested they wouldn't check T3 nor T4; my TSH was 0.78 becasue it is a slow response hormone and you can be hypo for quite sometime before it will show in your TSH levels. I continued to get worse and worse and should have called the squad. Finally my post op appt. came and my TSH level was 10 and the nurse tried to tell me that the doc. probably wouldn't increase my level because it was just slightly out of the "normal range" their lab uses up to 5.5 as normal. I said excuse me, I must have misunderstood. what did you say my level was and she repeated 10 I said even using your out of date ranges that is almost double what it should be and two weeks ago my level was ideal. I am experiencing severe symptoms therefore my medication dosage needs to be increased. She said well I'll talk to the doctor and let him know what your levels are but he probably won't increase your dosage.

 
Old 08-20-2008, 11:09 AM   #9
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Re: Just had to share...

Quote:
Originally Posted by DesertRose77 View Post
Oh, Rhonda, best of luck getting to that magical .3 mark! I can't BELIEVE they thought a TSH that high was acceptable. Craziness!!!

Say, how long do you have to wait before you can get bloodwork done? 4-5 weeks or something close to that? I'm curious to see how far my TSH has dropped since starting my meds a week and a half ago (after my TT and RAI treatment).
I waited until week 5...I felt so much better a couple of weeks after starting the levo but then last week (week 4) I started feeling crummy again so that's what precipitated the call to the doc. I think it is suggested to wait 6 weeks. I just wasn't ready to let myself feel bad for two more weeks. I did increase my levo on my own...I started taking a pill and half on Friday.

Rhonda

 
Old 08-25-2008, 05:32 AM   #10
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Re: Just had to share...

Hi Rhonda, I have been wondering how your labs were. I haven't been on here in awhile, been out of town. I am so sorry you are hypo now, this is what I dread so much. I hope you get your tsh straight soon and feel better! Let us here what the DR. says.
Tami

 
Old 08-25-2008, 01:12 PM   #11
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Smile Re: Just had to share...

Thanks for checking! Well,here's how the appointment went in a nutshell...

Nurse: She starts telling me when I get in the room about being at the top of the range and I really don't need any increase in meds. I calmly tell her that I need suppression therapy and that the endo told me .3 was my tsh goal. From there we chat about my surgery etc...

Doctor: Nurse must have told him because he comes in and says "so we need to play the game of lowering that tsh to .3?" I respond yes, he asks why, I tell him. He asks why I am asking for an increase in levo. I tell him the symptoms I am having. Extremly tired, puffy, very cold feet and fingers, hair loss. I explained this was how I was feeling prior to starting levo and those went away for a about two weeks and then started coming back again. His response to me? Well you must be extremly sensitive because patients don't normally have symptoms like that until they have a TSH of at least 10. I think my jaw must have almost hit the floor because I was shocked he was saying this to me. I was ready to attack...but I did not because I wanted the increase in meds. So I ignored his comment and focused on the .3. I did get the increase..I was at 50mcg and now have 75mcg.

I did get a copy of my labs on the way out...I requested the FT3 and 4. They did not run it...either they ignored me or they did not know what it was. I had a FTI, free thyroxine index instead? What does that do? It has thyroxine total, %uptake and free thyroxine index...not for sure how that test fits in the picture??

So the good thing is that I got the increase in medication...I think it has helped...this is my 10th day with the new dose as I did start increasing the levo prior to the appointment. Hopefully this will be the bingo.... The bad news is that I don't think my family doctor of 16 years and I will continue with my thyroid treatment...I will go back to my endo and see if he will agree to run the FT3 and FT4 on my next lab appt....

At least I had the suppression therapy as something concentrate to get more medication...I just feel so sad for anyone going in and having my same symptoms and my same TSH (5.81) being told that they are within range and then having to live with feeling rotten....

Rhonda

 
Old 08-25-2008, 04:14 PM   #12
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Re: Just had to share...

Rhonda, I'm glad that you got your increase, but you are probably right to turn to your endo from now on. I still can't believe your doc thought those symptoms start at a 10!!! Kudos to you for increasing your own dose those last few days. Surprising when we have to take these matters into our own hands, huh!

I'm on 125 mcg synthroid. At first I was feeling pretty good, but I think any improvement was going to make me feel better no matter how small. My TSH was 164 at the time :P Anyway, it's been about 2 and 1/2 weeks and I'm starting to feel more tired again...This is bad timing because I just started the school year and babysitting again, lol. I will talk to my ENT and see if he will up my dose. Do you guys suggest going to an endo for that? I don't have one yet, but can surely ask my other doc for recommendations.
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Old 08-25-2008, 04:46 PM   #13
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Re: Just had to share...

Quote:
Originally Posted by DesertRose77 View Post
Rhonda, I'm glad that you got your increase, but you are probably right to turn to your endo from now on. I still can't believe your doc thought those symptoms start at a 10!!! Kudos to you for increasing your own dose those last few days. Surprising when we have to take these matters into our own hands, huh!

I'm on 125 mcg synthroid. At first I was feeling pretty good, but I think any improvement was going to make me feel better no matter how small. My TSH was 164 at the time :P Anyway, it's been about 2 and 1/2 weeks and I'm starting to feel more tired again...This is bad timing because I just started the school year and babysitting again, lol. I will talk to my ENT and see if he will up my dose. Do you guys suggest going to an endo for that? I don't have one yet, but can surely ask my other doc for recommendations.

DesertRose,
I will be dealing my endo from here on out. It is just so hard after having a family doctor for so long and then have to start a new relationship with a new doc...actually it is just really disappointing.

My only advice to you regarding your situation...just don't wait too long to talk about a dosage adjustment. I think if you are sensing you are slipping backwards my guess is you are right. I think after all we have been through we now know the importance of listening to our bodies. It is my opinion that if we wait too long we just really go down hill fast and then it takes awhile to get back to feeling well. I understand the bad timing...I started back to school with students today so I was stressed a week ago Friday when I realized that I was not getting in to the doctor for a whole week and thinking about feeling rotten and starting back to school. That's when i upped my dose ...

As far as what kind of doctor? I would say after my little experience just recently that I would pick any doctor who is willing to work with you...regardless of the title.

Take care...let us know how you are feeling and what you decide to do.
Rhonda

 
Old 08-26-2008, 04:19 AM   #14
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Cool Re: Just had to share...

Quote:
As far as what kind of doctor? I would say after my little experience just recently that I would pick any doctor who is willing to work with you...regardless of the title.
ding! ding!! d i n g !!!

Some people like Endo's while others prefer Dr of Osteopathic Med (with D.O. after their name) RMB nailed it in the quote.

 
Old 08-29-2008, 06:28 AM   #15
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Re: Just had to share...

Thanks for the advice, ladies! I will call my ENT today and schedule an appt. Yes, Fam, I think by now we're all sensitive enough to our bodies to know when something is amiss. I'm starting to get that all-too-familiar burning sensation in my arms when I do little things like laundry, and my legs have been pretty achy this last week. I'm sure my body felt GREAT after starting the meds because my TSH was so high (164!!) ; ANY change was bound to feel pretty good. Now that I've been on it 3 weeks, I'm guessing I'm still not where I need to be and now I can recognize it. Good luck with school, Rhonda!!! I hope you're off to a great start!
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