Saw Endo Because I Have Both Hypo and Hyper Symptoms (3)

[kaykay4]

And, what's this ... "that's okay we me."  Is he the specialist or am I???

Did he really do anything for me?  Did I get the "bum's rush" from him?  What do I do and where do I go from here?

Any help will be most appreciated.

Kay

[Christamo]

Hi-very new.  Can you tell me who you go to for your CFS?  I am having a hard time finding a doc, are you in Minn./St Paul area??
ChristaMo

[meganrox]

Hi,
Poor memory these days, so I can't remember if you're one with CFIDS? I have it too, & same symptoms as you, mostly...hypo & hyper at once, sort of.
My TSH is dropping (2 now, was 7 last wk.) and my T4 is low though (5 on scale of like 4 - 12). I got put on beta blockers too, to calm the heart. My CFIDS doc. is very calm about all this but I'm not! Endo. is testing me for adrenal probs. etc. I heard (but am not sure) that pituitary prob. can cause a person to have both hypo & hyper symptoms. Ugh. Just wanted to share my woes w/ a fellow CFIDs sufferer. :) thanks for reading -Megan

[kaykay4]

Thanks for responding.

Yes, I have tried taking the Levothroid only, and the doctor was not happy with the results so she started me on both Levothroid and Cytomel.  She tried varying the amounts of Levothroid and Cytomel until we came up with the 150 mcg Levothroid and 5 mcg Cytomel combination, which worked for me, again, except when it didn't.

Here are the labs results from April 2006 through April 2007.  I am missing one (between the April 2006 and January 2007) because it was done by a non-HMO lab, and I don't have it here, but I'm assuming it was OK because my dosages weren't adjusted.

April 2006
TSH 3.1 (0.2-5.5)
T4 Free 1.0 (0.8-1.7)

January 2007
TSH 1.00 (0.34-5.60)
T4 Free 2.12 (0.58-1.64)

March 2007
TSH 1.39 (0.40-5.50)
T4 Free 1.4 (0.8-1.8)

April 2007
TSH 0.7 (0.2-5.5)
T4 Free 2.0 (0.8-1.7)

These were all done when I was on the 150/5 combination.

Since I am predominantly hypothyroid, and the hyperthyroid episodes/symptoms are scary and knock me for a loop, as well as compound my CIFDS problems, should I ask my doctor to lower my dosages to (hopefully) stop these hyperthyroid episodes/symptoms and learn to live with the hypo symptoms when it's not enough meds?

The endo didn't discuss any options or further testing with me except to continue following my CFIDS doctor's course of action, which is to stop taking the meds for 1 to 3 days when going through a hyper episode/symptoms and take propranolol as needed for the rapid and hard heartbeat and shaking.

Personally, I would rather go on less meds and live with hypo symptoms.

[GravesLady]

Or take the Levothroid once a day in the AM. Split the cytomel in 4 and take 4 times per day, approx 4 hours apart, for that is how long T-3 last in the body.  So by taking it 4 times a day you will have a steady stream of T-3 in your system.

T-3 gives a boost then a let down when it is out of the system in 4 hours will give a person an up and down effect such as  hyperthyroid like symptoms.  
Also, when first taking T-3 it works fine (for some), than after a while it doesn't have the same effect.
If you don't have a conversion problems which is very rare but I have seen it in others, then I don't understand the reasoning for taking T-3.  It has been proven by science that it does not make a person feel any better than when taking T-4.  Unless mind over body, sort of.

You/we can have the antibodies without having the disease.  Antibodies are seen in other autoimmune conditions and in people with normal healthy thyroids.  Our levels are more of an indicator, on how they relate to each other and then antibodies will confirm.


Try splitting up your cytomel and take 3/4 hours apart, 4 time per day/night and see if it helps - Good Luck!

GL
GravesDiseaseAndRAI

[thyroid man]

have u ever just tried taking the thyroxine and not the cytomel? Maybe it"s the cytomel that causes u to go hyper for awhile since it is fast acting and doesn't stay in the body that long. Most people just take t4 thyroxine and not t3 witch is what cytomel is.

[thyroid man]

I'm guessing u were on t4 only when u first began thyroid treatment? Maybe U weren't on the t4 long enough to feel 100% and your doctor added t3 too soon. It can take awhile to feel good again. More than a few months for some. When was the last time u tried t4 only? Maybe u should try it again.

[kaykay4]

It has been years since I was on Levothroid only.

I have been on the 150/5 combination for at least 3 years.  Before that I was on  150 mcg Levothroid with 5 mcg Cytomel a.m., and an additional 5 mcg Cytomel early afternoon.  And before that, I remember doing a slow climb up the Levothroid ladder.

I am meeting with a doctor at Stanford on Wednesday to discuss possible inclusion in a CFIDS study they are conducting, and I think I'll ask him about a possible CFIDS-thyroid connection.

The following week I meet with my CFIDS doctor who is also treating me for my thyroid problems.

I learned absolutely nothing from my visit to my HMO's endocrinologist, and he offered no change of treatment, no adjustments to my meds, and no additional tests.

Thank you and GravesLady for supply information and insight.  I will be discussing this with my treating doctor.

[kaykay4]

Thanks for responding, GravesLady.

I requested a referral to an endocrinologist because I have been on a roller coaster ride with my thyroid for at least three years, but probably longer, and I'd like to find out why.

As I said, I take 150 mcg of Levothroid and 5 mcg of Cytomel.  For most of the time those dosages work for me, and my levels for TSH and Free T4 are within normal range.  (As you and the endo said, this is a high dose of Levothroid, but I got to this dosage slowly, and it works for me.)

Then, without changing anything (thyroid meds, other prescriptions, other supplements, diet, etc.), I start experiencing hyperthyroid symptoms, some of which are scary and many are just the opposite of my norm.  The blood tests I take during this time, show that my TSH has dropped to the low end of normal range and Free T4 has gone way up out of range.

I am prescribed propranolol for the rapid, hard heartbeat and shaking, and the doctor has me stop taking my thyroid meds for a few days (1 to 3) when these hyperthyroid symptoms persist.  Eventually, the hyperthyroid symptoms stop and my levels come back into my normal range.

My treating doctor had antibody tests run, and she said that I have Hashimoto's disease.

I was hoping that the endocrinologist would help me find out why I go from hypo to hyper and back to hypo.  I assumed he has seen or read of cases like mine and would have a course of treatment.

Was I wrong to assume that?

[GravesLady]

Well I am not sure what you are asking, but here is my two cents worth:

Many people do not have symptoms or very little symptoms, as myself.

Supplement  blocks the  absorption of the thyroid meds. in which you will get less of the medication in  your system.  The same goes for a lot of other drugs/medications, foods, etc . Some you will get less absorption while other will increase the absorption.

In my opinion, your Levothroid dose is too high. By lowering meds to next dose should bring up your TSH a tad and lower your FT-4 a tad.
Can't state about Cytomel without knowing your FT-3 level.  

Some people have antibodies for both Hashimotos an autoimmune thyroid disease which causes hypothyroidism and Graves the autoimmune thyroid disease that causes hyperthyroidism.
However they cannot be both hypo and hyper at the same time, but one set of antibodies might predominate with their symptoms, at one point in time and  months/years later the other set could take over. Typically one of the diseased conditions will dominate, at least for a while. The antibodies do not necessarily "neutralize" one another. Either the Hashimotos or the Graves antibodies will dominate. And the condition that prevails needs to be treated.  

GL
GRAVESDISEASEANDRAI