I hate you.
Please keep on keeping me alive.
This is what my relationship with my thyroid medication is like. Thyroid medication is an interesting thing. I had my thyroid taken out – because of cancer. Apparently if I didn’t take thyroid hormone replacement I would eventually go into a coma and die. I know that when I haven’t taken it in the past to get ready for tests (we call it going hypo as in hypothyroid) I get extremely sick. The worst time was when my TSH got up past 86. Normal is between 1 and 3 IU/ml. That was when I was getting ready to do a radiation iodine dose. It was meant to kill any small cells left behind after my surgeries. I was so sick I couldn’t lift my new born who was maybe 12 lbs by then. Maybe. I had to have others feed him, burp him, dress him, change his diapers, bathe him. I missed all those little nice moments. My mom or my sis-in-law or some ladies from my mom’s church would take care of him physically and would put him on my lap or lay him beside me and he and I would coo and stare at each other.
Wait, back to the topic. I was so sick I couldn’t carry my child. I couldn’t shower without being so exhausted I couldn’t walk. I couldn’t think, I hurt all over – I mean think of the worst flu you ever had and how all your bones and muscles and joints ache for a few days. That’s how I felt. Times 10. For 2 months. I was moody, I was freezing all the time, I couldn’t digest right so everything I ate made me sick. I couldn’t even lay in bed and read because my eyes went blurry until I was on my meds.
So, you see, I know I need this medicine. I know my body needs to have this hormone replaced. But in MY opinion the options for thyroid replacement hormone are not all that great. You have Levothyroxine – which is the generic name for several different brands of T4 hormone. I take the name brand synthroid – I have had the most luck with it being a steady dose and not making me sick, etc.
Most doctors these days say that MOST patients do fine with just T4. If you have a properly functioning thyroid, your body produces T3 and T4. But supposedly our livers are supposed to change the T4 into T3. And honestly, all my labs come back normal – my T3, my T4, my T3 uptake. So my liver must be doing it’s job.
Some patients need to take T4 and T3 to feel right again. Sometimes their livers just don’t do what it should. So they take a T3 pill also, the most common brand name for that is Cytomel.
Some patients take a combination of T4 and T3 in a more natural form of the medication. PLEASE, if you want to try this, talk to your doctor – do NOT go to the vitamin store and buy the thyroid “boosters” they have there. It is actually very similar to the medicines sold by prescription, in make, but it is not properly stored, it is not usually properly dosed, and it can cause serious damage to people who need this hormone to live because they can’t keep their hormone level at the right level. There ARE prescription medicines made from dessicated bovine or porcine thyroids. One is called Armour Thyroid. Some patients feel much better on this more natural, more “complete” medicine. My doctor won’t let me try it because I am a cancer patient. I need to keep my TSH at a certain level (an abnormally hyper level) to help keep the cancer from growing. My doctor says she can’t control people’s TSH as well with the Armour. Or with generic brands of what I take for that matter. She told me she has let several of her patients take Armour or generic brands of levothyroxine, but never cancer patients. Only those who have a functioning thyroid that needs help with medication.
So, back to “I hate you synthroid.”
Right now I am in the middle of a dose change. For 5 years I had absolutely no problem with my TSH fluctuating. It didn’t matter when I took it, whether I ate or drank with it or not, what part of the day, what I ate during the day, etc. Some people have really bad absorption problems. They have to take the medicine a couple hours before eating on an empty stomach, no dairy or other calcium or iron or coffee or grapefruit or nuts or cabbage, or…. within 4 hours of taking it. Some people have to really struggle to keep their dose at the right level. I never did. I took it with or without food, with or without vitamins, with or without fiber.
Last fall I started having my TSH fluctuate. I really couldn’t figure out why. I hadn’t changed anything. We have had to change my dose 3 times in one year.
When we change my dose it affects me greatly. I get moody, I get anxious, I get sleepless and restless – though not a productive restless. I get angry. I get hungry. I crave carbs and salty foods. I get aches and pains, I get frustrated. I get greasy skin and dry scalp and my hair falls out in chunks. I get heat and cold sensitive, I get tired. I think the worst is my temper and mood swings. They are hard enough for me to deal with, but my husband and son seem to get the worst of it no matter how hard I try not to let it affect them. Last time we changed it I yelled at my husband in front of his friends. Which is a HUGE no no in his culture.
Anyway. I love that the synthroid keeps me alive. But I hate that it affects me so much in so many ways. I wish WISH someone would come up with something that works better for us. We need something better.