Friday, November 12, 2010

Medicine Madness

I am not a person who lives a structured life well. I work at odd hours ( for way too many each day), take breaks at odd hours and used this to balance having a career and being a mom. I ave been blessed to have jobs that are extremely flexible and have carved a way of life that supports this. 
Now my Biology has decided I need to work to a different drummer. Trying to balance this, stick to the routine that my body wants and not go crazy is my newest challenge. 

I have been taking 2-3 pills per day for my Hashimoto's for some time.  It sounds awful, but I have a great, balanced routine going. I do 5mcg Cytomel first thing ( 5-6am), get my day started,  stop eating at 9am, take Synthroid at 11am, eat any time after noon again. If the day is long or very active, sometime in the afternoon I take another Cytomel. Most days I do well without it.

Now add in this latest challenge, and taking Mestinon around the clock.  For about a week, the Dr. has had me on 60mg every 4 hours around the clock... and it needs to be taken with food.  I have been managing OK by setting multiple alarms on my cell pone and taking mestinon at 12/4/8/12/4/8.   In the last day or so, I ave started having some sideffects from the Mestinon- muscle twitching, cramps in foot/calves and forearms. Nothing killer, but enough to want to play with med schedules and see if I can back off without losing functionality from where I am. If this is MG, incidents can come and go with varying intensity. I would prefer to be at minimum drug needed and have ability to increase if needed. It is very true that I am nowhere close to "normal" functioning for me,  but I am at the max dose that the neuro doc is comfortable with. Further advancements are going to have to come either from time, or some other med/treatment combinations to be decided when the diagnosis is finalized and we move forward.  Luckily, I got permission from him to mess with my med schedules, as long as I do not do anything closer than every 4 hours.  If I can get the same level of functionality from fewer pills for now, I will mark this as a success.

Since there are so many pills  involved, I would prefer to have something regular and easy to remember-- but I would also like to have something that gives me the flexibility of a slot where I can "add in" on really active days-- like that reserve second cytomel.  I am really grateful for Evernote- where I have started a notebook just to track symptoms and will be able to look at patterns and find the best timing to stay strong. Sometimes I wonder why House does not use an electronic whiteboard, where he could pull up patient charts, data graphs side by side with hand written notes he makes.  Maybe it is time to have House go hi-tech. Should we write in a suggestion to the show for a diagnostic differential dashboard??

Thursday, November 11, 2010


I have had Hashimoto's Thyroiditis for about 10 years now. It is an autoimmune  thyroid disease that causes my body to believe that bits of my thyroid are actually invading aliens and to destroy them like the ground lasers explode the descending aliens in Space Invaders. This results in hypothyroidism that is treated with daily meds to replace the missing thyroid hormones.  Except for the infrequent times that my meds got out of balance and my dosage needed to be changed, this has had very little effect on my quality of life. As diseases go, it is a relatively simple and painless one to deal with.

However, it seems that once your body misfires and destroys self instead of real invaders, there is a much higher probability that it will do it again. Incidence of other auto-immune diseases gets much higher, I am told, after the first.  This is one of the reasons that Myasthenia Gravis ( MG) is a leading contender for my current muscle fatigues and blurry vision.  In this case my initial blood tests came back within the normal ranges for the AchR ( Acetylcholine Receptor) antibody which is the most common cause of MG. It is possible to be seronegative and still have MG ( although personally I am suspicious that this is the medical community grouping like symptoms together without understanding cause and just calling it the same thing), but it also then leads to testing for less common forms of MG- the MuSK ( muscle surface kinase) antibody and the Voltage Gated Calcium Chanel  Antibody. They took  the blood for these two tests last Wednesday evening ( Nov 3), but it will take us a while longer to get those results back.  In a game of medical economics, the rarer the disease the fewer labs do testing for it. Those blood results got sent by the hospital reference lab to two separate labs for processing.  Again, we wait for results to decide what to do next- I think this is where they would insert a commercial in a House episode... or just assume that there was conveniently a kit in the basement lab to run exotic diagnostic tests to get results more quickly.

Wednesday, November 10, 2010


“Waiting is painful. Forgetting is painful. But not knowing which to do is the worse kind of suffering.” Paulo Coelho

Today is a phone call day. So I sit here, waiting for my neurologist to call and give me the results of the CT Scan I had on Monday.   This means that a phone goes with me everywhere (yep, even the bathroom) and I am not leaving the house. This is one of the big deal results- up for exploration was both if there are any issues with my thymus ( which would implicate Myasthenia Gravis) or if there are any signs of Lung Cancer, or other cancers (because some of my results indicate Lambert Eaton Syndrome).  I have given up trying to imagine what it will feel like if the Dr has to sit me down and tell me I have Small Cell Carcinoma. It is impossible, even this close to the possibility.

I will post and share some of the CT images ( they are very cool) once I know the official report. Out of self protection, I am not going to post them and have peeps second guessing how to read them. Trust me- I spent 2 hours of my Monday afternoon down that road already and it is both scary and frustrating. Finally you have to say " I know enough to be dangerous and not enough to be trustworthy, so walk away from the monitor". I left the CD with the data in the computer downstairs and have not gone back to that computer since.  My Dear Hubby ( MDH) was much wiser and declines looking at them at all until we have the report.

UPDATE: Call just came in, no thymoma, no tumors in lungs, CT Scan was clean. Doing a bit of a happy dance here. Will share beautiful CT images soon.