Thyroid Problem

[kimmie1981]

Hello,

I had my whole thyroid out years ago.  I am suppose to take medication, and have for quite some time, but have recently stopped because I am sick and tired of not feeling good.  It seems that everytime I take my medicine I get a headache and it makes me feel horrible.  I have noticed not taking it that I feel better, than when I do take it.  Is it possible that something in my body is making the stuff I need from my throid and when I take the medicine it then is to much?  Also, what will happen if I continue to not take my medication? (like a time frame of what will happen).  Any insight on this would be greatly appreciated.  Thanks

[goolarra]

I don't believe it's possible that thyroid hormones can be made by anything but the thyroid (I'm not a doctor, but I've never heard of it).

It sounds to me like your meds have never been properly adjusted so that your hypo symptoms are alleviated, but you're not on so much that you start having hyper symptoms.  Another possibility is that some people report having problems with one brand of levo or generic levo, but then do fine on one of the other brands.  If seems to be the fillers in the different types that affect people adversely.

It takes somewhere around six weeks for levo to be removed from your system (this is a generalization, of course, we're all different).  It depends on how sensitive you are to meds changes.  I usually start to feel some difference within a couple of weeks whenever my dose is changed.

Have you been having your thyroid levels monitored regularly?  Do you know the results of your last labs?  Your doctor should be testing free T3, free T4 along with TSH.   It's then best to adjust medication according to FT3 first and FT4 second.  TSH correlates very badly with symptoms.

What meds are you on and wha't the dose?

I don't think you should stop taking your meds.  It won't be long before you start feeling hypo again if you do.  If you have recent labs, post them along with their reference ranges and members can comment.  If not, ask your doctor to order some so that you can get the dosage adjusted properly, and you can start to feel better again.  You shouldn't have to choose between feeling horrible and taking your meds.  If you do, your meds need adjusting and/or changing.

[kimmie1981]

Hi, thanks for all the input.  I had blood work done a couple days ago, and I'm gonna actually get the print out of the results today or tomorrow, then I will be able to post it. I called her and she said my level was low and started me back on Levoxyl 50MCG.  She also did a few other tests for inflammation etc. because I have been having severe muscle/joint pain in my heels/ankles and shoulders/back.  She said everything else was normal.  I don't excatly believe that with the pain I am experiencing.  I have also got a very long history of severe depression, OCD, ADD.  Which in turn doesn't help sorting out the thyroid problem and basically the doc never looks any further because they can blame everything on my depression and thyroid.  I also get a lot of migraines and headaches.  I wish there was a machine that you could plug into your body and if tells, what is wrong and what needs to be done to fix it.  Maybe in the next 100 years.  Where I live, the docs are not that good and they all do the same thing to everyone.  My mom had a bad pain in her back and still does, she went to the docs, they didn't examine it or do anything else and told her she pulled a muyscle and to take advil, and sent her home.  She is looking for a different doc as it's been well over a month and she still has the pain in her back, not to mention she has had back problems all her life and has had back surgery due to hurniated discs and so.  That apparently didn't mean a thing to the doc.  We have to drive atleast an 1 1/2 to go to someone actually worth going to, which gets quite costly.  I will post my levels when I get the printout.

[Totie]

I would not recommend stopping the medication. You have no thyroid. As you well know, it controls a lot in your body.

Try a different brand.

[Venora Moonwind]

Weight loss and gain  requires dose adjustments. I susupect you need and adjustment. You really should have your labs done about every 3 months.
I also suspect you are getting headaches from not having the right dose.

You really need to take your med. Not taking it can even lead to death.
Never mess with your thyroid meds.
Love venora

[jcorky]

synthroid is a synthetic drug,,if you can take that, ask for armour thyroid it is man made

[kimmie1981]

I actually was doing some research yesterday and stumble on some helpful information.  I have also been told I have fibromyalgia, having that be the cause of some of my symptoms, I put both thyroid/fibromyalgia connection in my search and came upon this:
The meds I have been on Levoxl, Levothyroxin are T4 meds to regulate my TSH level.  Which keeps the thyroid level in normal range, but what it doesn't take care of is the tissue metabolism.  T3 is what takes care of that and relieves the fibrom. symptoms.  So I should be taking both a T4 and a T3 medication.  Also found some info that studies say it works better if you take it at night rather than morning.  If interested in this info, (as a lot of people that have thyroid problems have fibromyalgia also) go to http://.thyroid.about.com/cs/fibromyalgiacfs/a/fibrothyroid.  I am going to discuss this with my doctor and see if this is the info I have been in so much pain for.

[goolarra]

You're right that it's T3 that is used at the cellular level.  T4 must be converted to T3 before it can be metabolized by cells.

However, there's an important point that you've missed.  No thyroid meds DIRECTLY regulate TSH.  TSH lowers as a response to FT3 and FT4 being raised.  You don't necessarily have to TAKE a T3 med to have your FT3 levels in the normal range.  You can take a T4-only med, and as long as your body is converting properly, the T4 will be converted to T3.  

This is why it is so important to have free T3 and free T4 tested along with TSH.  If your levels of FT3 (especially in your case with your fibromyalgia) and FT4 are good, no matter what meds you are on, you will be able to evaluate your thyroid status and adjust meds optimally.

[kimmie1981]

I still haven't got my actual tests numbers back, but givin I have all the symptoms when I am taking my meds, I am pretty sure the T3 is what I am missing.  I think I'm gonna go see a specialists.  I need to get feeling better.

[Jennifer1987]

Why did you have your thyroid removed?? I think your best option is to sepak with your doctor, maybe he can change the  med brand and stuff.

I often wonder which is better, to have a thyroid with hashimotos or have it romoved, does not having a thyroid cause more problems? sorry for the questions Im not helping much!

[kimmie1981]

I had my thyroid removed because had had huge nodules on it, weren't sure if it was cancer,  that in turn was messing my throids numbers up way bad, and the doc's at Darmouth were even confused about what my throid results were coming back as.  So they advised it really needed to come out.  I wish it didn't need to come out.  I would recommend you keep it in unless you absolutely have to have it out.  At least if it's in there you have some hormone coming out of it, verses having no thyroid, and having no hormone and having to get it all through meds.  As far as talking to my doc, useless.  I think I need to go find a specialist.

[jcorky]

THANKS  FOR THE INFORMATION,I'M GOING TO LOOK INTO FIBROMYALGIA./THROID..BUT I STILL HAVE A BIG PROBLEM WITH HIVES,THEY'RE  DRIVING ME CRAZY..AND HELP ON THAT..ANYONE ELSE HAVE THIS PROBLEM..

[kimmie1981]

I  finally got the results of my blood test.  I don't think she even tested my T3 T4 levels.

Here they are:

Hematology                                                                  Liver Panel
WBC - 6.9           (L=4.80  H=10.80)                Total Bili - 0.4          (L=0.20  H=1.2)
RBC - 4.29          (L=4.20  H=5.40)                   Direct Bili - 0.1       (L=0  H=0.20)
Hgb - 13.3           (L=12  H=16)                         Alk Phos - 57        (L=32  H=92)
Hct - 39.7            (L=37  H=47)                         Total Protein - 6.9  (L=6.40  H=8.3)
MCV - 92.5          (L=81  H=99)                         Albumin - 4.1        (L=3.50  H=5)
MCH - 30.9          (L=27  H=31)                         ALT - 10               (L=10  H=40)
MCHC - 33.5        (L=32  H=36)                         AST - 17               (L=10  H=42)
RDW - 12.6          (L=11.50  H=14.50)                Indirect Bili - 0.3    (L=0  H=1)
Plt - 208               (L=130  H=400)                     A/G Ratio - 1.5      (L=1  H=2.50)
MPV - 11.1 H       (L=7.40  H=10.40)
NE% - 48.1          (L=42.20  H=75.20)
LY% - 41.2           (L=20.50  H=51.1)                       Miscellaneous/Thyroid
MO% - 6.6            (L=1.70  H=9.30)             CRP(Inflammation)(mg/L) - 14   (<10 mg/L)
EO% - 2.7             (L=0.90  H=2.90)              TSH - 9.27 H  (L=0.49  H=4.67)
BA% - 1.4 H          (L=0  H=0.80)
NE#  - 3.2              (L=1.4  H=6.50)
LY# - 2.9               (L=1.2  H=3.4)
MO# - 0.5              (L=0.10  H=0.60)
EO# - 0.2               (L=0  H=0.20)
BA# - 0.1               (L=0  H=0.20)

[goolarra]

You're right, I don't see FT3 and FT4 there anywhere.  TSH is high at 9.27 indicating hypothyroidism (but you already knew that).  

I think it's time to find a new doctor who knows how to treat based on FT3 and FT4.  I can't believe that with your symptoms and complaints about the meds giving you side-effects, your current doctor chose to run only TSH.  Well, I can believe it, but it's irresponsible.

Don't suffer because your doctor,s ignorant...find someone who can help you.

[kimmie1981]

I think your right, time to find a new doc.  I called her and asked her to test  my T3 and T4 and to give me meds for the T3 as that is most likely my issue.  She was very difficult to convince and at that, she's like well I guess we could do it, but I don't think it's gonna make much of a difference.  Then she proceeded to say that she didn't think there was any medication for T3.  Hello, and she is a doctor.  I told her I have done a lot of research on it, and I really think that this T4/T3 is the solution to my symptoms.  At this point, I need to find another doc.  I am going to get my T3 and T4 levels tested and search Dartmouth for a specialist that will know what he's/she's doing.

[goolarra]

She sounds scary!  Didn't know there were T3 meds???  Wow!

Good idea on the specialist...best of luck.

[kimmie1981]

I just got my T3 and T4 results,  T4 is 0.58 (L-0.61  H 1.12)  T3 is 2.55 (L-2.50 H-3.90), any advice?

[kimmie1981]

Oh yeah, my TSH level was 9.27.

[goolarra]

You definitely need to get back on thyroid meds.  FT4 is below the range, FT3 barely made it in, and TSH is way over.  

What would I do?  Well, first of all I think I'd try again to see if T4-only meds will bring up your free's and alleviate your symptoms.  And I'd definitely try a different brand name to see if the fillers are what's causing you to feel so bad on the meds.  Once you get closer to "normal", you can consider adding some T3 if the T4 alone is not alleviating your symptoms.

This all takes some time, but I think it's worth starting out low, increasing slowly, and only changing one variable at a time so it's easier to know what the cause is if you start not feeling well or have side effects.  

Have you made any progress in finding a new doctor?

[kimmie1981]

My doc said that my free's were normal.  I asked her to try me on some T3 meds just to see if they would make a signifigant difference.  She said they were not low enough to put me on meds. She does now know there is such thing as T3 meds.  She is surely a quack.  I told her I want a referral to dartmouth ASAP.  I'm going to see a specialist.  Got to wait till they review my records and then they will call me with an appt. I've been taking my Levoxyl.

[goolarra]

Kimmie, you definitely need a new doctor.  Your FT4 simply is not normal, and your FT3 technically is normal, but very, very close to abnormal.  Furthermore, many people start feeling hypo before their numbers even get out of normal range.  Even your TSH is way out of normal range.

I.m glad she brushed up and "discovered" T3 meds!.  Best of luck with your referral.  I'm glad to hear that you're back on your Levoxyl.  When you see your new doctor, don't forget to ask about switching brands to see if that helps you feel better.

[kimmie1981]

God, I don't know how much longer I can keep going like this.  My wholebody is so messed up right now.  GRRRRRRRRRR.

[goolarra]

I'm sorry to hear you're feeling really awful.  Are you on your meds or off?  How long have you been back on (if you are)?  Any progress with the referral?  This is the problem with hypothyroidism...when your meds aren't right, you don't just get one symptom, you get a whole load of them and just feel lousy.  

[kimmie1981]

yes, I'm on my meds and have been for about a month now, it just seems that I take something to fix one thing and then that throws something else out of whack.  Haven't heard from the referral yet.  So frustrating.

[kimmie1981]

ok, I just got copies of my labs from the last year, and something I didn't notice before, is that there was a test done just last month on June, 9 2009 that I totally do not understand.

Parvovirus B19 IgG Antibodies - My Result for that was 5.2 HIGH.  Normal range is 0.9 - 1.1.  What does this mean?