Hypothyroidism-pain, anger, and plain grouchiness

[crzymom]

I am a 30 year old mother of six.  I have been battling issues with thyroid problems for 14 years now.  I was first diagnosed with hyperthyroidism (Grave's Disease) when I was 16 years old.  It was very bad and I was taking 15 pills a day to control it, my racing heart beat and ulcers that came because of it.  I went through my first pregnancy with these issues and my daughter came a month early but very healthy.  When I was 18 years old I got Radioactive Iodine treatment and since more than doubled the weight I started at.  It has been a battle, the doctors do not seem to have a clue how to help me and really do not seem to care.    My quality of life and that of the people around me suffer because of this.  I am in constant pain (kidney area, and joints), I am totally exhausted, I have anxiety, I no longer have a sex drive at all and I am so grouchy).  I have had to switch doctors several times and each time they lowered my dose because they could not believe my dose was so high but that was a dose I worked up to and finally felt ok on.  The dose was 2 1/2 .200 (200mcg)  pills of Levothyroxine per day.  When I switched doctors it was reduced to .150 mg (150mcg) one pill one time a day.  I am sick of suffering and I am sick of dealing with doctors that can not help me. I am breastfeeding my 6 month old and nearly lost my milk.  I have since started taking double my medication and got some of my milk back but the milk supply is not what it should be.  I just switched doctors again because I moved.  My questions are:

Is pain a common symptom of hypothyroidism?
Is anxiety and grouchiness normal?
How do I talk to my doctor about going a little higher on the medication even before the test results are in?
Is Cytodel a treatment that may also help me?

Please help.


This discussion is related to Am I taking too much synthroid?.

[gimel]

Sounds like the following info might be of interest to you.  In my opinion, the very best way to treat a thyroid patient is to continually test and adjust the levels of the actual, biologically active thyroid hormones, which are free T3 and free T4 (FT3 and FT4, not total T3 and total T4), with whatever type of medication is required to alleviate symptoms, without being constrained by resultant TSH levels.  Relief of symptoms is all important.
FT3 is actually the most important thyroid hormone because it is at least four times as active as FT4, and FT3 largely regulates metabolism and many other body functions.  FT3 also has been shown to correlate best with hypo symptoms.  TSH is a pituitary hormone that is affected by many variables and it does not correlate very well at all with hypo symptoms.  Many members here have reported that full symptom relief has required that their FT3 level had to be adjusted into the upper part of its range and FT4 adjusted to at least the midpoint of its range.  
The key is finding a good thyroid doctor that will treat your symptoms by testing and adjusting your FT3 and FT4 levels.  If your body adequately converts T4 to T3, then you can be successfully treated with  a T4 only type med, which is usually the easiest approach.   If not, then you may need to consider meds that will allow you to adjust the T3 level independently from T4, such as a dessicated T4/T3 combo med, or even a combination of a T4 med and a T3 med such as Cytomel.    

[amner]

You may want to check into switching to Brand Name Synthroid.
I took Generic Synthroid for almost 30 years and was a raving lunatic.  Early this spring, I asked my doctor to change my medicine and my physical and mental health have improved dramatically!  I had been
diagnosed with 7 different mental health problems and all of them just
evaporated when I switched meds.  The only lingering problem I have is anger -- mad because of all the wasted years and the treatment I received for so long by the medical community, by my family and even by friends.  I am working through these issues and feel better than I've felt in my entire life!  You might as well try this.  I was skeptical until I talked to three other women who had the same result.

[Leval]

I can vouch for the anxiety and grouchiness part for sure, yeah, that's hypo all right -- though apparently hyper can do the same dang thing.  I get a sort of all-body soreness when I'm hypo, too, and a weird middle-of-the-back pain that makes it hard to move around easily.  Not the same as your describing, but I can certainly sympathize.

Cytomel, as I understand it, is T3 hormone (Synthroid's T4) and is sometimes prescribed along with Synthroid.  Somebody smarter will have to explain when that's the case, though I'm betting it has to do with T3 and T4 scores on the bloodwork.

Me, I had a total thyroidectomy in July and was put on Cytomel a week later.  I'm now beginning to take Synthroid and am in a hypo gulch in between the two meds' cycles of effectiveness.  The endo says long-term Cytomel usage can damage the heart, but maybe that's only if you rely on it totally and don't have Synthroid doing a lot of the job.

Even though I'm pretty new to this, I already understand why you're frustrated with the doctors.  

There seems to be a hidden belief that letting us be endlessly miserable is fine since they're "saving" our lives.  Setting my meds so I can function at work is not important to them.  No, what matters is I can creep around my apartment between naps, weeping and wondering why THIS is "normal" on the blood tests.  Sheeeeeeesh.

Like you, I'm trying to learn how to talk to them more effectively.  I'll be watching the other answers here for clues.

Hang in there!