Concerned: Dx'd with Hypothyroidism but normal TSH, T4, T3 w/ ATYPICAL symptoms

[Laser girl]

Hi Dr. Mark,

Sorry so long but FRUSTRATED

Was dx'd w/ Subclinical Hashi's 3/04 and began 50mcg Levoxyl.  Dose has gradually increased to 100mcg (now taking).  Tried Cytomel once but DC'd dt becoming hyper. I'm 138lbs, 64.5"

Med hx is + for: GERD, IBS, Asthma, Allergies, PSVT (corrected w/ablation), Sinusitis Chronic, Rosacea?

Neuro- Neg MS (per MRI brain), Nerve Conduction wnl

Rheum- Undifferentiated Connective Tissue Disease is the best dx after W/U

Endo- ACTH stim resulted in Cortisol=18, baseline Cortisol wnl, Neg Carcinoid Syndrome. ITT was recommended but I'm scared to do it.

Symptoms:  Freq. low grade fevers come on around 2pm, facial/ear flushing, panic, HAIR loss incredible last 3mos, burning feeling toes, tingling (ulnar & radial distribution), fatigue, exercise intol., electric shock feeling brief at times, heat intolerance but VERY cold hands, terrible reflux despite Prilosec that usually works, muscle pain, could keep going

Latest labs:  

Free T4- 1.6 (0.8-1.8)
TSH- 1.5
Thyroglobulin <.2 (2.0-35.0)
Thyroglobulin AB- 793 (<20)
ANA- positive (hx 1:160 or 1:80)
Thyroid Peroxidase AB- 116 (<35)
AST & ALT sl elevated

If someone would just tell me these are normal symptoms to be experienced by a thyroid attempting to burn itself out, I could accept it. In the meantime I keep thinking something else is wrong.

Have an appt. w/ a 3rd Endo in Nov but I feel so bad and am trying to get through clinical in order to graduate this Dec
(Primary Care Nurse Practitioner).    

Any thoughts are very much appreciated!

Laser Girl

[doodlebug1]

Two thoughts came to my mind: about your face flushing, headaches, fever--in spite of hysterectomy, sounds like the symptoms of meno and a dropped estrogen. Funny. And second: concerning your raise in Synthroid--you might want to do some research into natural dessicated thyroid, such as Armour, which many of us have found worked FAR better than Synthroid and other T4-only meds.

[sammygirl]

I HAVE BEEN ON THYROID MEDS FOR 35 YEARS. I HAD A HYSTERECTOMY 2YEARS AGO, TAKE A VEGETABLE BASED HORMONE AND WAS FEELING GOOD UP UNTIL SEVERAL WEEKS AGO.  NOW I HAVE THE FLUSHING, FEELS LIKE A LOW GRADE FEVER, HEAD ACHES AND HEART BURN.  I KNOW I NEED TO LOOSE WEIGHT SO THAT IS MY NEW GOAL.  ABOUT 3 YEARS AGO, MY DR. DECIDED BY THYROID TEST WAS SL LOW AND BOOSTED ME UP TO .2 MG OF SYTHROID FROM 0.175.  DIDN'T FEEL A WHOLE LOT DIFFRENT BUT AFTER 6 MONTHS AND A NEW TEST MY THYROID FUNCTION DECREASED..CONFUSING AT BEST. I THOUGHT WITH MORE SYNTHROID IT WOULD BE OVERACTIVE NOT LESS. ANYWAY, IT HASN'T BEEN A BIG DEAL UNTIL RECENTLY SO IF ANYBODY HAS ANY THOUGHTS ON THE SUDDEN ONSET OF
FACE FLUSHING, HEADACHES, FEVER FEELING LET ME KNOW.

[ancientmariner]

Do you have the lab results for the Free T3 & T4 with ranges? From my reading, I know that to feel WELL, you need to have your Free T3 close to the top of the range, and your Free T4 in the top 1/2 to 1/3. I bet yours are LOW normal.

Also, what sort of adrenal test did you have? If it was the ACTH, that is not very sensitive, and just looks for complete adrenal failure (Addison's), so you could have adrenal fatigue and have a normal ACTH test. The saliva samples 4 times a day are a more accurate test.

I think you're already hypo, from your symptoms, and reducing the Levoxyl will make you MORE hypo, which WILL be worse. Just my opinion, you have to do what you think is right! While you're getting things adjusted, make sure you get copies of all your lab reports, and research other options, like natural desiccated thyroid, too. The more informed you are, the more likely you will be to get proper treatment. Don't settle for feeling less than 100%.

I wish you the best.

[Laser girl]

I know those things are normal for hypo, BUT, my TSH is 1.5, free T4 & T3 normal for quite some time.  It's frustrating because my hair is clogging the drain and I'm getting low grade fevers daily.

I'd swear I was hyper regardless of the lab results.  So, after 3 endos, I'm taking matters into my own hands and reducing my Levoxyl to 88mcg from 100.  I can't function like this anymore.  
If I end up hypo, I couldn't feel much worse than I do now!

Oh, my adrenal function looks good on paper.

PS- Are you a boater?

Thanks for listening
Laser Girl

[ancientmariner]

I have seen all of the following as symptoms of hypo or hyperthyroidism.

GERD, IBS,  Asthma,  Allergies,  Sinusitis Chronic,  Rosacea,
low grade fevers, facial/ear flushing, panic, HAIR loss,
fatigue, exercise intol., heat intolerance but VERY cold hands,
terrible reflux despite Prilosec that usually works,
muscle pain.

In addition, many of those symptoms are also listed for adrenal fatigue/insufficiency.

[tnt406]

Hi I am not on medicine,right now.I still haven't seen my doctor.My neurologist knows about the blood results.But not my family doctor.Do you think thyroid medicine should be prscribed?Thanks in advance.TNT406.

[Mark Lupo, M.D.]

Good history!  I agree with you that it's not likely all thyroid - sounds like your TSH is reasonable on 0.1mg and the trial of T3 didn't agree with you - not too much more to do thyroid-wise.  

I am concerned about the neuro sx - esp the electrical shock (often called L'Hermitte's sign if I recall correctly) -- may need more investigation to r/o MS (ie, LP).

The ACTH stim is technically normal - I probably wouldn't put you thru an ITT.  

The mixed CTD may be the culprit as well - likely the cold fingers are in part Raynauds....

Reflux brings up unlikely possiblity of ZE (zollinger-ellison due to gastrin overprod) or other neuro-endocrine phenomenon.  Does not sound like pheo.  

Good luck - keep me posted.