Desperately looking for help.

[rajesh_vl]

Hello,
I'm 37 year old Male.  
During 1998-99 ( at the age of 25) I was under too much stress, followed by episodes of panic attacks for couple of years.
I consulted a dozen cardiologists then. They had a same opinion that nothing is wrong with my heart and started Rivotril(Clonazepam).
In 2001 I was diagnosed for Hyperthyroid (T3 and T4 was normal and TSH was bit below normal) and was on Neo-mercazole(carbimazole) 5 mg for 5 years.
In 2004 I was operated for low grade bone tumor on left scapula.
In June-2006 doctor asked me to stop Neo-mercazole(carbimazole) then my TSH was 2.14 and T3, T4 also in normal range.

After that gradually I started pseudo-vertigo and weakness.
I was checking thyroid function regularly my T3 and T4 never show much variation but TSH was dropping consistently.
After around 16 months my TSH level dropped from 2.14 to 0.52.
My GP and endocrinologist had a firmly denied relapse of hyperthyroid, since T3,T4 and TSH was "still" in normal range.
I was on leave for more than 3-months so I was desperate to get to normal life so I started  Neo-mercazole(carbimazole) 5 mg on my own.
I was also taking some herbal medicine for all my problems.
Somehow I started feeling after some time (somewhere in April -2008).

Though my anxiety was much controlled, I was generally feeling tired all the time.
I could not walk for more than 10 minutes, on TMT I was fully exhausted and stopped after 4 minutes(TMT test- 8/8/2008).
MY GP denied any organic problem and asked me to consult psychiatrist.
Psychiatrist prescribed me Zosert 50 mg and I had really severe panic attack.
I just stopped consulting my GP and psychiatrist.

I thought I'll try homeopathy for this fatigue problem.
But then one of colleague insisted that he knows one really good endocrinologist and I should consult her.
I talked to her, she also asked me to test T3, T4, TSH and also thyroid antibodies.
My T3, T4 was in normal range and TSH was 1.81 and my thyroid antibodies tests were negative.
she asked me stop Neo-mercazole(carbimazole) 5 mg and directed me to new psychiatrist.
Somewhere in April 2009 I stopped Neo-mercazole(carbimazole) and talked to psychiatrist.

Psychiatrist told me that I'm suffering from CFS(chronic fatigue syndrome) and CFS patient tend to develop drug sensitivity.
He also told me that there is no medication for CFS and put me new diet chart and started GET (graded exercise therapy) along with beta-blocker(Inderal) and Rivotril(Clonazepam) which I was taking all the time..

Nothing worked, day by day I'm feeling more tired and anxious and cannot stand in sunlight or near heat, it's weird feeling, more frequent panic attacks, anxiety and phobias...
It's been 4 months I'm at home.
Somehow I feel my severe anxiety is due to my lower TSH value.
Now my TSH level is 0.58 (dropped from 1.81 in 17 months), doctor again denied role of hyperthyroidism.

Other important info is I'm on low dosages of beta-blocker(Inderal) and Rivotril(Clonazepam) for last 10-11 years.

So many questions come to my mind?
Why my TSH should drop if we are assuming remission period?
If my thyroid antibodies test was negative what is decreasing my TSH level?
Why doctors are ignoring earlier trend of TSH drop, doesn't it indicate possibility of TSH going below normal in near future?
Is it really CFS?

I would appreciate any suggestions... what should I do, whom should I consult.
Thanks in advance.

[laura1967]

Need updated labs with correct tests done: Free T4, Free T3, TSH

[rajesh_vl]

1. Yes these July results are after stopping carbimazole.
     I'm off the carbimazole from April-May 2009.
     They are not FT3/FT4.

2.  I had tested F3T/FT4 before withdrawal of carbimazole in Mar-2009 then results were
     Free T3:  2.89  ( 2.3 - 4.2 )
     Free T4:  1.19  ( 0.89 - 1.76 )
     TSH:        1.76  ( 0.35 - 5.5 )

3. Earlier also in 2006 I tried to stop carbimazole.
    In 2006 with carbimazole:
    Feb-2006
    Total T3:       131.45    (75 - 200 )
    Total T4:        9.76   (4.5 - 12.5 )
    Ultra TSH:      1.81   (0.5 - 4.6 )

    Off the carbimazole from Feb-2006
    June-2006
    Total T3:       124.96    (75 - 200 )
    Total T4:        7.52   (4.5 - 12.5 )
    Ultra TSH:      0.60   (0.5 - 4.6 )

    Oct-2006
    Total T3:       156.34    (75 - 200 )
    Total T4:        10.08   (4.5 - 12.5 )
    Ultra TSH:      0.52   (0.5 - 4.6 )

4. Restarted carbimazole from Oct 2006 (till april 2009)

[laura1967]

So are these July results off the carbimazole? And if so for how long were you off of them?  
And the t3 and t4 are totals? If so they are no good.....need to see the active form of free t4 and free t3 with the tsh.

[rajesh_vl]

Just to add..

You had asked me for Free T3/T4 results.
Recently I have done T3/T4 and TSH test but not Free T3/T4.
Last time I tested my FT3/FT4 was on 21/2/2009.
The results were
FT3  2.89  (2.3 - 4.2)
FT4  1.19  (0.89 -1.76)
TSH 1.76  (0.35 - 5.5)

Recent (24/7/2010) thyroid function test results :
T3 1.57 (normal range 0.8 - 2.0)
T4 9.32 (normal range 4.8 - 11.8)
uTSH 0.48 (normal range 0.35 -5.5)
I had tested TSH at one more lab and that shows
Ultra TSH 0.58 (normal range 0.49 - 4.67 )

Thanks in advance.

[rajesh_vl]

Horselip, Laura thanks for your replies.
@Horselip
I will surely see neuroendocrinologist and also go for the suggested tests.
My GP had asked me for Hemogram(Hemoglobin), blood sugar and B-12, all the results were absolutely normal.  On some CFS forum I read that Calcium citrate, magnesium and Vitamin D can be helpful. I have yet to check that. I can understand fatigue due to CFS what makes me suspicious about hyperthyroidism is heat intolerance, sever anxiety and frequent panic attacks.

@Laura
As far as I remember when my Hyperthoidism was diagnosed in 2001 with TSH value above 0.3 and below 0.5 This new range(0.3 to 3) is recently defined (if I'm not wrong it has yet to receive wide acceptance )  
And after starting Neo-mercazole I was feeling really good, my routine was good, and apart from 5 mg neo-mercazole I was just taking 10 mg Inderal(beta-blocker) once in the morning and just half (means 0.25mg) of Rivotril(Clonazepam) in the night.
Recent (24/7/2010) thyroid function test results :
T3 1.57 (normal range 0.8 - 2.0)
T4 9.32 (normal range 4.8 - 11.8)
uTSH 0.48 (normal range 0.35 -5.5)
I had tested TSH at one more lab and that shows
Ultra TSH 0.58 (normal range 0.49 - 4.67 )
>>Now the other point I want to make is did anyone test your thyroid labs since you have >>been off the carbimazole? You really don't know where you stand and where your true >>values are until you test off the meds.
After stopping carbimazole my THS level dropped from 2.14 to 0.52 in 16 months, I'm not sure if I hadn't started carbimazole again I could have seen that "final" lower value.
>>Also, why are you still on a beta blocker? Are you still having issues with  a high pulse >>rate? Seems like a long time to be on that and clonzepam.
Beta-blocker (inderal) it helps me for anxiety and if I don't take it in the morning I'll surely have panic attack. Sometimes in the evening also if I feel I can hear my heart beats I take one tablet. As far as clonzepam is concerned I'm on average dose of 0.75 to 1mg for around last 10 years.

Thanks once again.

[laura1967]

Hi there. The new range for TSH is .30-3.0 so your TSH is perfect. Now as far as your Free T4 and Free T3 are concerned, I would like to know your last results with ranges please. I would like to see where in the ranges your really are.
Now the other point I want to make is did anyone test your thyroid labs since you have been off the carbimazole? You really don't know where you stand and where your true values are until you test off the meds.
Also, why are you still on a beta blocker? Are you still having issues with  a high pulse rate? Seems like a long time to be on that and clonzepam.
I also would recommend a good workup for testing of the above tests that horselip recommended. Vitamins/minerals are extremely important to take as well.

[horselip]

Hi-
I've got some thoughts regarding your dropping TSH. Maybe it is a pituitary or adrenal problem? The pituitary gland is where TSH is made.

I think that sometimes CFS is used as a "catchall" diagnosis by doctors when they don't really know the answer. Although I believe that it truly does exist, there might be some more tests that could be done to rule out pituitary or adrenal gland issues.

You might ask your endo if he/she can order a more blood tests to rule out if the pituitary gland and adrenal glands might be not working right. If your endo is not willing to do this you might asked to be referred to a neuroendocrinologist.This is a special type of endo who specializes in the pituitary gland.

Off of the tops of my head I would recommend that these tests might rule in/out these other parts of the endocrine system: Testosterone, free testosterone, LH/FSH, IGF-1, AM cortisol, ACTH, TSH, aldosterone, renin, and DHEA sulfate.Vitamin D, Ferritin (iron) and B-12 might be good to check too as they can cause fatigue.  

Thyroid is also very complicated and there are many minerals that are needed in very small amounts at certain stages. I don't know all about this though but I think  selenium and copper are two of these? Other people in the forum probably know much more about these minerals.

Hopefully this might help?
Horselip