Thyroid is a pain in my butt

OK, so I am a 29 year old man, who has dealt with hypothyroid my entire life (congenital). As a child I got tired of being poked and prodded every couple of weeks, so I took myself off of the synthroid at the age of 10. I never had any problems with my weight after that.

As an adult I recently decided to get it under control, after looking at all of the other risks. When i had my first blood test done in june of 2010, just under a year ago, my tsh was at 143, other than depression, a little sluggishness, and some anxiety issues, i felt fine (well, normal for me), I started out on synthroid 50 and then it has increased a few times since then.

Here is what has me confused. 2 weeks ago, i did a walk-in at my dr office because i felt horrible, and have since then. He ordered and recieved blood work right then, and my levels were at 25.99, my meds were increased to synthroid 125 and i feel worse then ever.

How does it make any since to feel functional at tsh over 100 and totally worse as it gets close to being normal?
has anyone else had this problem, if so, when will i feel better.

[goolarra]

Please describe your current symptoms in more detail.

Did your doctor test anything but TSH?  Is this the first time your TSH has been "close to normal"?

What is the cause of your congenital hypothyroidism?

Any recent stress, trauma, surgery, illness, major diet changes, etc?

[Brucergoldberg]

Amazing post.    Also,  are you seeing a family doc or specialist?    Welcome to the board.

[dard1982]

on the 27th they did a full lab, and tested everything. all was normal except for the tsh which was down to 25.99.

i at my current level i am more tired than normal, more depressed, more sluggish,and muscle cramps, with complete lack of motivation. i actually feel like i have the flu or something similar, but its only thyroid. no sneezing or anything like that.

[dard1982]

im actually being treated by 2 doctors for the same thing. I have a primary care to handles most everything for me, and an endo to monitors and checks behind him to see that he is doing everything how he should.

[dard1982]

the cause of the congenital hypothyroidism is unknown. I know that my gland is about 3 times smaller than normal, and it was found in a pku test after i was born.

no major changes in anything as for lifestyle, stress, diet, etc

and finally, yes, this is the first time i have ever been anywhere near normal level. on 50 mcg of synthroid my tsh came down to like 35, but when my med was increased to 75 mcg my tsh decided to jump to about 55 lol. this made no sense at all, and had my doc baffled, so he increased it again which put me at 25 and feeling terrible.

[goolarra]

If they tested free T3 (FT3) and free T4 (FT4), please post the actual results, even though they are in reference range.  Also, please post ranges as they vary lab to lab and have to come from your own lab report.  There's also a total T3 and total T4 test (that aren't nearly as useful).  If "free" or "FT3" and FT4" is not specified, the results would be for totals.  Please identify which.

How many years were you without thyroid meds?  Did you ever have thyroid levels tested during that period?  We have to assume that your thyroid is capable of producing some hormone, or you wouldn't be writing to us now!  

"How does it make any since to feel functional at tsh over 100 and totally worse as it gets close to being normal? "

TSH is a very poor indicator of thyroid status.  Any number of factors in the thyroid/hypothalamus/pituitaty feedback cycle can go awry, making it useless.  High (or low) TSH causes NO symptoms.  TSH is merely a messanger from the pituitary to the thyroid to tell it to produce more T3 and T4.  Low levels of T3 and T4 are what cause hypo symptoms.

So, if you have FT3 and FT4, please post those.  I have a couple of ideas, but I'd really like to see those if you have them.

[Brucergoldberg]

Has it shrunk due to non function?    Have you thought about just having the thing yanked and starting from square 1?

[dard1982]

the cause of the congenital hypothyroidism is unknown. I know that my gland is about 3 times smaller than normal, and it was found in a pku test after i was born.

no major changes in anything as for lifestyle, stress, diet, etc

and finally, yes, this is the first time i have ever been anywhere near normal level. on 50 mcg of synthroid my tsh came down to like 35, but when my med was increased to 75 mcg my tsh decided to jump to about 55 lol. this made no sense at all, and had my doc baffled, so he increased it again which put me at 25 and feeling terrible.

[dard1982]

the exact cause of the small thyroid is unclear., from what i have heard, the disorder is a birth defect. The gland never fully developed when i was in the womb.

[dard1982]

My GP explained my situation to me pretty well. He said that the body has very interesting ways of adapting to bad situations. He said that i was functional with such a high tsh because it went untreated for so long, that it developed a new normal. Of course i was sluggish, forgetful, and diagnosed as severely adhd, with anxiety, but i was functional. I was able to find a career that work with all of this. I spent 10 years working as a land surveyor.

The doc said that i feel so bad now because even though my tsh is at 25.99 and the goal is to be under 1.0, it is a far cry from the 80s or 140s. My body is feeling like it is getting into the normal range and is having trouble adapting.

The body adapted to high, and no that its getting low, the adaptation it developed is going away. he said it will get much worse before it gets better.

[dard1982]

Im didn't get a copy of my last set of labs so im going to have to wait until next week to get that to you. I do remember that when my tsh was at 140 my t4 was at like .2 where the normal range began at .4

[pdub544]

I also know thyroid is the pits.  I have taken it for 27 years and it only gets worse or should I say never better, but that's another story.  A friend had flu like symptoms, doctor thought it was her thyroid.  This went on for 1 1/2 months.  It ended up being a small crack in her heater and she was getting carbon monoxide poison.  The only thing that saved her was the fact that she went outside everyday.

[goolarra]

I think your doctor's assessment is pretty much right on.  When we're hypo, especially for a long time, our bodies compensate for lack of thyroid hormones in other ways.  Adrenals are good for this...they often try to step in and do the work of the thyroid.

Introduce meds, and the rebalancing act begins.  He's also probably right that you'll feel worse before you feel better.

It will be interesting to see your labs...  

[goolarra]

It should get better.  If it doesn't, your doctor probably isn't treating you properly.  If you go to the top of the page and hit the orange "Post a Question" button, you can start your own new thread, and perhaps we can make some suggestions.

[dard1982]

ok so the post by ala1982 was me. i created an account for my fiancee last night and never signed out. so that was in fact me. but for gp i am going to copy and repost it.


so, i do not have a copy of my most recent labs, but i will be requesting them this week. here is a list of some of my past labs. since there is so much in them, i am only going to be listing the elements which are out of normal range, but will provide the labs normal ranges since they may vary.
or only the ones dealing with thyroid since those are directly relevant to the topic.

6/9/2011
hdl-  low - 32-     , desired range is over 35
tsh-  high- 89.77, desired range .300--4.200
all metabolic and blood is withing normal range

7/11/2011
ft4-            low -    0.6       , normal range         .7 -   1.9
t4-                        4.1         normal range      4.0 -  12.8
tsh-          high  132.70       normal range        .3 -    4.2
total t3              111            normal range     70-   170.

started synthroid 50 mcg

8/26/2011
tsh          high     35.34       normal range     .47 - 5.01
started synthroid  75 mcg

11/ 8/2011
tsh          high    43.75        normal range     .47 - 5.01

started synthroid 100 mcg


3/27/2012 had more labs done.
did not recieve copy. dr reported everything as normal but tsh still high with level at 25.99.
med incrested to 125 mcg
.

[dard1982]

also, when i started 75 mcg, i took the advise of my sister (certified pharmacy technician) and (medical social worker) and decided to switch from gen levothyroxin (levothyroxine) to brand synthroid because of how the fillers may differ from one gen to the other, and the synthroid stays the same each time.

[dard1982]

after doing some research, im thinking of asking my doc to check to see if there is a possible issue of poorly functioning adrenals, and maybe taking a suppliment cortisol to help. maybe this will help me to feel better.

[goolarra]

It can't hurt to be on a brand name.  Fillers do vary manufacturer to manufacturer.  If you take generic, your pharmacy might switch genereic manufacturers without notification.  If you find something that works, stick with it.

Unfortunately, your testing has been pretty inadequate.  There's only one FT4 there, way back in July (before you were even on meds?).  No FT3 whatsoever.  Were FT3 and FT4 perhaps "in normal range"?  

If adrenals are not functioning properly, they definitely have to be addressed before thyroid can be.  I think it would be a really good idea to test adrenal function.  

[dard1982]

i called my endos office earlier and left a message for him. he will be out for a week but he should get it. he is actually really good. he is also a professor of endo for university of florida.