Hoping for some input! I have tried a lot and need answers!

[Rasta15]

I am 40 year old woman and was diag. with graves disease in 2003.  I had my thy. radiated and went into hypo. in 2003 and have been taking .112 of lev. (generic) since.   Three months ago I went off BCP, which I was only on for 1 1/2 mo and it has changed my life.  I got horrible headaches, chest pain, shortness of breath, chest tightness,extreme muscle fatigue, dizziness, vertigo, blurred vision in right eye. I have had chest x-ray, ekg, blood test, mri's ( A&V) on brain, and echo, diabetes, lymes, and a eng test on my arms which indicated a c-5 and c-8 problem, but the c & t spine mri's were both good.  All normal.Tested my thyroid 3 times in the last two months. I just saw a new endo. who reduced my levoxyl and said I may be a little bit hyperthyroid now.  My heart has been doing a flip flop thing, a few times a day, the last couple days, but I know that can be related to thyroid.   Also, been getting some twitching over my left ear.  The new endo. said going off birth control could have thrown my thyroid on a rollercoaster.  I am still having a hard time breathing. Breathing test improvement with albtetrul 12%.  Inhaler, but not sure that is the cause. Never had asth.   I am a little concerned the echo. is not enough.  Although, my chol. level,ldl, and hdls are great.  I have felt horrible for the last three months.  I am normally working out 4-5 times a week.  I am a college athlete and I am very in tune with my body.   I know that certain people feel better in diff. ranges of normal hyper/hypo.    I have started the new dose four days ago,  I am anxious for the month to pass so I know if that is it.  I am at my wits end and don't know why I feel so tired, achy, and have muscle weakness.  My left arm feels the most weak and heavy.  All the doctors are at a loss too.  
9/20/09    TSH 2.74
10/1         TSH 2.21    T4 free 1.3
11/3         TSH .64       T4 Free 1.0         and T3 Uptake 37%  
Range      .34-3.5           .5-1.6                     32-48%

I also had a cortisol test which came back at 16.8, Normal.  My new endo. reduce my lev. from .112 to .100 and took me off generic.  I also failed to mention my feet are also always freezing.  It could be that I am underweight by about 10 pounds.  Another symptom of Hyper...Thanks for any input you have....

Neurologist will do a lumbar puncture to rule out other things. It just seems so weird it was three days after going off BCP.  I am holding off on lumbar puncture.  I am pending surgery on the 23 to remove ovaries and appendix.  I am nervous to go thru and surgery feeling the way I do, but all the dr. say it is okay.  Help!!!

[LivingInHope]

No, RBC would typically be part of a CBC or complete blood count.  What you should ask for if you want to know if low iron is causing some fatigue is blood iron and ferritin levels and T.I.B.C.. (TIBC stands for total iron binding capacity, which tells how much iron your body is binding onto and if toward the high end tells you your body is really needing whatever iron you have available.  If your blood is highly saturated with iron, your T.I.B.C. will be lower, because it is not as desperate for the iron.)   Your RBC can be normal and your iron level can still be low and cause symptoms (I had this happen to me pre-hysterectomy.)

[Rasta15]

Would that be a RBC test?  If so those were normal too.  I had a whole gamat of blood testing.  I am not sure which one would tell you about low iron.  The cardio. told me heart was fine and my cardiac markers  was .3 with a scale of .0-3.0 I think the breathing issue issue is asthma.  I will know in Jan.  Thanks for all the input.  :)

I still have to decide about hormones.  I only  have two days.  I guess I can always stop taking them.  

[LivingInHope]

I haven't taken any hormone replacement therapy after my hysterectomy- is that what you are referring to?  I had severe endometriosis and I was told after my hysterectomy by the surgeon she couldn't guarantee she got all the endometrial implants, because they can be microscopic.  Estrogen can make them grow and I call I think it was vivelle or something- low dose estrogen patch company and they said that there was the potential for their estrogen patch to change endometrial implants to cancer.   I take flaxseed capsules 1000 mg twice a day and usually eat fairly healthy as far as the cholesterol issue goes, though I don't get as much exercise as I should to raise my good HDL.   HRT carries with it also an increased risk of stroke, etc. (talked about awhile back in the news).  Also, I've heard though estrogen might slow osteoporosis from coming on, it does not prevent it.  I already have bad osteopenia in one of my hips and my back shown on my latest bone density test (I'm under forty).  I am concerned about this.  

Perhaps you had an allergy issue- mold maybe?  If the house had brick, that tends to be porous and can probably invite mold with the moisture it draws (speculating).  We have a problem with mold in our house not so old down in the basement and are running a dehumidifier to try to fight it (though there is still some smell evidence that it still needs help in our book, etc. closet.

Re: the fatigue- if your thyroid is not always in balance, I suspect this can be a source of fatigue.  Also stress can be a great fatiguer.  Did I ask already if your iron and ferritin are in normal range?  Low iron, even with a normal CBC (past experience) can cause fatigue.

[Rasta15]

What type of hormone did you take?  I am conflicted on the bio. identical vs. estrogen.  I have a history of breast cancer in the family, so I know the estrogen is more connected with that.  However, I also know that the estrogen reduces the risk of heart dis. which is more likely to kill you.  UGH! I wish I had a crystal ball.

I saw a cardio. yesterday.  He told me my heart was fine.  He referred to a pulm. which I see on Jan. 12th.  I am breathing better.  I think I have seasonal alleg. my eyes feel swollen and I have the post nasal drip.  I am trying the flonase/zyrtec combo per the alleg.  I am hoping to have that part cleared up so I can figure out the fatigue.  I am starting to feel a little better.  It makes me wonder.  I moved out of a 1955 year old house a month ago , in which I was living for 6 months.  Hmm!  environmental?  

I hope you are well!

[LivingInHope]

No, the MRIs you listed would not show the detail of a special dynamic MRI of the pituitary (which is an extremely small but amazing gland that is sometimes called, if I recall correctly "the master gland".  It has a number of hormones important to many functions in your body.   One MRI you listed (the A V) looks at arteries and veins and you also got one of the the cervical (neck) and thoracic (even lower than the neck) spine.  

Regarding your ovaries, if you already had your uterus removed, I would suggest you think seriously about getting both ovaries out if you don't want more surgery later, because usually from what I read and if I remember right, the lone ovary will basically die after about five years or so and you will wind up needing it removed too.  Plus, you leave a possible risk of ovarian cancer, which can be deadly.  The reason some people want to keep it has to do with slowing osteoporosis, hot flashes etc..  

Regarding the potassium- did they have your tourniquet on for a prolonged time before taking your blood sample (that can make your potassium level measure high)?  It is important you get that retested and make sure they don't have the tourniquet on too long (and best to have it off for a short time) prior to taking the sample.  If your potassium is truly high, I believe this can cause dangerous heart problems.  I had a high potassium recently myself, but read up on it and remembered that the lady had the tourniquet on a long time, which I read can raise the potassium number.  How has your FSH been or have you ever had that one tested?

Thanks for the compliments.  I have gone through a lot in my own life which is why I have studied up a lot.  I once got an LVN as a teen because of my interest that direction.  I had my own hysterectomy (as my nickname suggests), I have a pituitary microadenoma, I have GI problems and a number of other medical issues.

[Rasta15]

I had a MRI A and V of the head and a c-spine and t-spine.  I am not sure if those would cover or show the area of the pituitary gland.  

I had an abdominal cerclage in 2004 when I was pregnant with my son.  That surgery had complications and they had to open my all the way up to repair a bleed.  I ended up have a partial hyster. when my son was born.  After that within six months I developed a severe adhesion from my left ovary to my small intestine.  I was grounded and had to have surgery to remove it.  That was in 2005.  I had to have another adhesion surgery in Jan 2009 bc my ovaries adhere together.  Now I have been producing painful cysts.  They are concerned bc of my adhesion issues.  I opted to have them removed since I can't tolerate the BCP.  They will be removing my appendix as well.  Just in case, but I have to say I am thinking part of my problem might be a chronic append.  I had surgery scheduled two weeks, but got sick and had to cancel.  I was just scanned at my pre op and no cyst existed, ( In fact, dr. said I was prob. going to ovulate out of my left soon) but I got my right abdominal pain two days later and it went away after two days of zithramax.  Interesting.

After returning from the hospital today, I am having lower right abdominal pain again.  I am thinking it is my appendix is flaring up.  I am looking forward to the surgery to get the problem removed.  I just have to make a decision if I want to leave the left ovary.  I told the surg. if the appendix looks bad take that and the right, but if it does not look bad I am not sure what to do.  I don't want to have anymore surg.  This will be number #21 in my life.  

I will have to buy a blood pressure kit and do what you have suggested.  My potassium has been check too and it is was 5.2 a little high.  .  My prolactin and progestone are fine too.

My issues are complex and I appreciate your time.  How do you know so much?  I am impressed. :)

[LivingInHope]

Yeah, I didn't see this one before.  Okay.  Thoughts- did they ever do a specially dedicated MRI of the pituitary- dynamic w/and w/out contrast to check to see if a tumor or other growth might be what is affecting your TSH level?
Birth control pills can make you gain weight, so I wouldn't be surprised if it has some effect on the thyroid, since the thyroid is what regulates metabolism and the birth control pills likely was slowing down the metabolism rate.  Fainting and dizziness are common side effects of being ON birth control pills, but not sure if those side effects would occur from withdrawing from the synthetic hormone regime.

  Why are you getting your ovaries removed?  If you are not always ovulating, FSH not consistent or too low, etc., brain and reproductive system having a communication problem....it would be another reason why to get your pituitary checked for a tumor besides your TSH.  If you have periods of estrogen drops, this might set off some tachycardia.

Your blood pressure is running on the low side of normal according to what you posted.  But please try laying for ten minutes, take your pulse and blood pressure, than stand with your elbow propped on table or counter for 2-3 minutes and take those numbers again and tell me what the numbers are.   Chest pain and light headedness, graying/whiting of vision can be not uncommon if you have postural orthostatic tachycardia syndrome like myself.  

Also, another potential dysautonomia symptom is feeling cold constantly.  Dysautonomia is dysfunction of the autonomic nervous system.  If it is just your feet and not the rest of you, it may just be like you are thinking- weight related or something.  P.O.T.S. is a form of dysautonomia.  Your BP and pulse numbers lying down versus standing should give a good indicator as to whether dysautonomic function is a direction your docs should be checking.

Regarding muscles aching & weakness, your low blood pressure and feeling your heart beating irregularly, I hope they have checked your potassium level recently to make sure it is not low.