High TSH with HYPER symptoms. WHAT?!

[Comisado]

Ok so I'm a newbie here, nice to meet you all; my name is Nova, I'm a 21 year old female and my story is really weird and it's got me crying my eyes out playing doctor because my endo thinks I have a gynecological condition whereas my gynecologist feels I have an endocrine problem and my Psychiatrist just thinks I'm crazy.

I have began experiencing the following symptoms beginning in January 2007 with Tachycardia originating from the sinus node, all indicative of Hyperthyroidism despite high-normal TSH levels:

---Tachycardia (sinus node) - After 20 years of having a normal heartrate, one day I woke up with a heart rate of <180bpm and ever since my heart rate has never went below 100 bpm.
---Enlarged thyroid gland
---I am naturally very thin, 5'0" and 108lbs.
---My periods, after 11 years of normal cycles, have mysteriously stopped.---I developed cystic acne.
---I have developed Panic Disorder, mood swings and depression.
---My hands tremor
---My legs are very weak
---My hair is thinning.
---Insomnia. Where I used to sleep 12 hours or more, I now can not sleep any longer than 5 hours without being awoken.
---Frequent bowle movements & IBS
---Fatigue despite the inability to sleep
---Hunger; increased need to eat. If I don't eat every 2 hours I feel very weak, this resulted in my weight going from 93lbs to 108lbs.
---Bloating and water retention
---Spikes in blood pressure, followed by dips in blood pressure


Now, my doctors have never once considered a thyroid problem. However, I obtained some labs performed from my most recent ER visit and my TSH levels were on the high normal side (3.84).

Aside from that test, I have had the following tests performed so far:

- Thyroid ultrasound - normal, although this ultrasound was performed BEFORE I had any symptoms, the reason for the ultrasound was because my thyroid appeared enlarged; final opinion on that matter was that I just "had a thin neck."
- 17-Ketosteroids - normal
- 17-Hydroxyprogesterone - normal
- 24 hour Cortisol - 54 - borderline high, "nothing to worry about, probably due to stress"-
- Free Testosterone & DHEAS - normal
EKG - Normal, tachycardia originating from sinus node with a very slight murmur.
- Complete anticoagulation workup - normal
- Morning cortisol w/ ACTH - normal
- Prolactin - 39 - High
- Prolactin retested* - 19 - normal; "because there is no breast discharge hyperprolactinemia is unlikely"
- Phosphorus - 1.3 - low
- Calcium - normal
- Magnesium - low/normal
- Potassium - low/normal
- TSH - 3.86 - high/normal "not indicative of thyroid disease"

Those test results RULED OUT or POSSIBLY ruled out:
-Late-onset Adrenal Hyperplasia
-PCOS
-Hyperparathyroidism
-Cushing's
-Thyroid disease

Even though I am 21 years old, I was inappropriately treated by a homeopathic doctor for hypothyroidism with low dose Synthroid when I was 14 because my T3 levels were borderline low. after about 2 years of Synthroid use, my pediatrician told me to stop taking the Synthroid because she ran a complete thyroid blood workup when I was 15 and took me off. I was fine until I turned 20 years old when I first experienced the acute tachycardia (explained above).

Tests that probably need to be done are:
-Total & Free T4/T3
-24 hour catechelomines (adrenaline, norepinephrine, etc) to rule out pheochromocytoma
-Pelvic ultrasound, CT scanning and MRI
- FSH/LH
- Estradiool
- Progesterone




I am honestly at a loss. I can not believe I have all the symptoms of Hyperthyroidism and the lab results of HYPOthyroidism. I even bought a book called Thyroid for Dummies.

WHAT THE $%#% DO I DO?! I am losing my MIND!!!

[NastyHashi]

10 bucks says you have at a minimum Hashimototo's Thyroiditis and more probable a mix of Graves'.

If you think you are relatively sane, and "something" is causing the mental problems with panic, etc., you should be tested as follows:

Adrenals - to rule out adrenal tumor (somewhat rare)

ACTH test - Adrenocorticotropic hormone to test Cortisol/Adrenal issues
24 hour Cortisol - 24 hour pee collection
24 hour catecholamine test - another pee test for all adrenal output - tests for adrenal tumors (pee in a jug for 24 hours then they test the urine)

Thyroid:

Thyroid Peroxidase antibodies (TPO Ab) - to test for Hashi's
Anti Thyroglobulin Antibodies (TG Ab) - to also test for Hashi's

Thyroid Stimulating Immunoglobulins (TSI) - To test and confirm GRAVES DISEASE

TSH
Free T4
Free T3
Total T3
Total T4

TBG - Thyroid Binding Globulin

You need to go see a real Endo that specializes in Thyroid, not Diabetes (most prefer Diabetes and don't know squat about thyroid). Usually Graves', unless VERY obvious, is treated with Xanax or other anti panic drugs and written off as insanity, as mine had been for years, until they tested my TSI and found my TSI was indicative of Graves' Disease which can certainly make you "nuts". Combine the fast heart rate of Graves' with fluctuating antibodies of Hashi's and you've got yourself an emotional roller coaster.

Your TSH being in the higher side of really normal indicates to me at least there is something going on with your thyroid. I am not a doctor however, but I've been through the wringer and am well read.

In addition to the tests above, I would hope at least one of your doctors would give you a full blood workup to rule out anything obvious - cholesterol, red blood count, liver function, kidney function, etc can all be screened with one vial of blood in a routine test.

Next, I would also check my iron and iron stores to make sure everything is ok there:

Serum Ferritin
TIBC - total iron binding capacity

If you were given all of the tests above, you would very quickly rule out a lot of the obvious and rule in some things that might not have been caught for years perhaps because some of the tests mentioned are a bit obscure to some docs....they just dont do it. If you google the above tests, you can see what each does and learn.

There are many things, including anxiety that can account for rapid heart rate but if you really feel it might be something physical then you need to get tested.

Good luck and keep us posted.

[Comisado]

What would doctors do in such a case?

How does your TSH levels come out?

Is it possible that I could have elevated thyroid hormones without the TSH being affected (according to their labs, it's in the normal range, as their "upper limits" are considered to be 4.82).

I definitely need my T3 and T4 checked, but I'm not holding my breath because my TSH came out normalish.

I am definitely not anemic. while I was in the ER they did a full workup. In the Hematology area my WBC was a little high, and some weird test called Neut% was high, and another weird test called Lymph% was low.

*sigh* I do have psychiatric issues, but they didn't appear until I had physical symptoms. I haven't had a period in over 6 months, my once beautiful skin is now covered in acne, my heart beats fast no matter WHAT state of mind I'm in and I have this weird panic disorder that makes me afraid to leave the house half the time cause I never know whena panic attack will strike.

I guess I'm just wondering if it is possible to be Hyper despite normal TSH levels.

[NastyHashi]

Yes, you can be hyper with normal TSH...or how bout this...Hyper with a 19.2 TSH????

My last TSH test came back at 19.2 and my TSI was 179 (zero is normal, over 125 is definitive) and yet I was experiencing hyper symptoms, or so I thought. 3 weeks prior to this test my TSH was 5.1, very close to normal.

All my other thyroid tests, T3 and T4 were perfectly normal - right in the middle of the range yet my TSH was 19 which is very high and I felt hyper with 104 beats per minute resting. My TSH can jump 15 points in any given two weeks. Talk about a weird thyroid case.

Hyper and hypo symptoms often over lap. You can get heart palps, panic, weight gain or loss with either hyper or hypo. You just need to get more fully checked.

As for your beginnings of Agoraphobia (fear of going out) please try hard not to let yourself get into that cycle if possible. I was there myself with panic and found it to be very difficult to overcome. At one point I didnt leave the house for 3 months straight when my panic was at its worst. Now I am pretty ok, but still don't drive much.

I will tell you from my extended experience with this crap that I have felt best when my antibodies are down. I went into some sort of remission for a year and a half and at that time I got tested and all my antibodies were low and I felt really normal. A few months ago that all changed and now my levels are sky high once again and I am once again shakey, hand tremor, light sensitive, FAT, dizzy. It sucks.

[Comisado]

I really feel for you. What about removal of your thyroid, or radiation? Could you try that? Why no meds?

As for me, since these symptoms have been going on for over a year now my agoraphobia waxes and wanes in severity. It seems like whenever I have a bad acne breakout and can't sleep, it gets worse.

In April of 2007 my stupid psych got me hooked on Xanax, which had really bad longterm effects so I switched to Klonopin and am currently trying to get the hell off that crap. I know that the Klonopin is causing a lot of my neurological symptoms that I didn't even mention, but I'm concerned about the symptoms that caused my doc to even put me on the crap in the first place-----no periods, panic attacks, tachycardia, weakness, panic, etc.


What's really odd is that when my tachy went above 180bpm, it was not responsive to Cardizem, Ativan, Xanax or potassium (at that point in time I wasn't hooked on Xanax or anything so it definitely should have worked). It calmed me down but my heart was still racing.

105 bpm is actually low for me now a days. My normal heart rate is usually about 115-120bpm, and under stress it can go as high as 180.

No period in 6 months either and nowhere in the literature do I find that a pheochromocytoma can interfere with menses, which leaves thyroid in question.

I know I was put on Synthroid when I was 14 but was taken off a year later, dunno if it had anything to do with this...

And I can't tell if I have a goiter or not. One day when I hurt my foot I went to the ER and the doctor there said I had a goiter. Went to an endo and she said I just have a thin neck.

What the he**?

[NastyHashi]

A goiter you can usually feel, literally to the touch. Just below where a man's Adam's apple would be, birectly above the center notch of your collar bone and to the left and right side is your thyroid. Gently press your fingers on the right and on the left of the "Adam's Apple" area and if its tight, you have a goiter. A normal thyroid has the consistency of a raw chicken liver if you've ever parted a whole chicken. A goiter will feel firm to the touch, not mushy as it should. I should note my wife has a nodule and we can actually feel it on her right side. Feels like a chick pea embedded into a chicken liver...its a hard round thing amidst soft fleshy thyroid.

For high thyroid pulse, they usually give Propranolol. For me the Propranolol worked like a dream and brought my heart rate right down to a normal level and I got much less shakey. For you, since your heart did not lower after Xanax, might further indicate a thyroid problem. I would be curious if you would have been better on Propranolol.

I don't understand why you've never been given at least a thyroid ultrasound, pituitary MRI or adrenal MRI or ultrasound. It seems like an obvious test. I also can't believe the docs let you walk out of the office with that high resting heart rate without further investigation.

I will attest, however, that when my Agoraphobia gets bad, I don't think an ounce of heroine would calm me down, particularly at the docs office, one of the things that tends to set me off.

No periods for a long time could indicate adrenal trouble or thyroid or something else of course....it seems like you have a good starting point at least. You need to be aggressive with these docs or find someone willing to listen and perform the tests that are needed.

As for me, well, the docs don't want to give me meds because my thyreoid levels were all normal and my TSI was high. If I in fact have Graves', adding Synthroid to my daily routine is like putting gas on a fire. On the other side, they don't want to ablate because if I don't actually have Graves' then a tiny pill each day could take care of the problem. No one knows what the hell is wrong with me exactly and that's my major problem. My thyroid appears to be keeping all my levels normal despite being blasted by all different antibodies each day but for me the daily fluctuations really suck....never know what is going to show up that day...hypo and sleepy exhausted dizzy or hyper and bouncing off the walls with heart palps, shakes and anxiety.

I am close to just nuking the thing though. I am getting tired of this. I am at a point with my Endo, who is also stumped, we can flip a coin and either try Synthroid and risk giving making me totally hyper or just nuke my gland and get it over with....

Last time I tried synthroid I thought I was gonna drop dead...my heart was pounding.

[jherod]

Not sure where you stand now, but I have had some of the same heart racing, panicky feeling symptoms. I have found that Inositol (natural supplement you can get at a health food store) calms it right down. I just mix a tsp in a water bottle with cold tap water. It tastes mildly sweet. Within 15 minutes I am feeling much better. Helps on those nights I can't sleep either.