Monday, July 23, 2007

Basal Temperature

I visit a thyroid forum on occasion. I have learned a LOT about thyroid, medications for thyroid, and many other things that most doctors don't tell you. One of the things I've learned is that most people who are hypothyroid have a body temperature of about 97.5 or less. There are some who are skeptical about the whole basal temperature and how it correlates with thyroid issues. Those who trust in it say that they know that their temperature is low when the symptoms arise, and when they feel good, they are on the higher end of temps.

I decided to do my own test of the basal temperature theory. I started to take my temperatures at different intervals of the day. When I was feeling just a smidge unwell my temperature would be under the 97.5. (I wonder what my temperature would have been BEFORE the cytomel.) Anyways, I usually hover between 97.5-97.7 on my good days. Someone in the forum posted that no one should be surprised if it doesn't go over 97.5. One day, I was feeling extremely hot, which is unusual, because most with hypothyroidism are sensitive to cold. I, for one, feel cold when no one else is not. Getting back to when I was feeling sensitive to heat...I decided to take my temperature at this time. Get this, it was 98.6! I felt like I was just so hot and couldn't cool down. Now I know that if i get over 98 degrees, I am feeling like I am in 100+ degree weather.

Some people are skeptical about this whole thing, but as for someone who tested it out, I know I'm a believer.

Wednesday, July 11, 2007

Maybe Some Light at the End??

There may be hope yet. The lady that was assigned my case called me and said that she had seen that I had gotten a referral and seen the endocrinologist. I said that I did and that I was about to fax her something about it. So she asked if I no longer needed to go through the process...I said that I didn't because I had went to the endo, BUT I wasn't happy with the endo. I told my case manager that I didn't think the endo and myself were on the same wavelength in regards to my health care. She said that she would see what needed to be done to see a specific endo and call me back. She called me back and told me she would email my PCP to refer me to the endo in Walnut Creek. This doctor's names is on a top doc list on a thyroid site I frequent. PLUS, the forum on that site had a person who was dealing with same issues, and told me she just started going to this doctor. For her, it was much better traveling the hour to see the new doctor, than to deal with the old ones near home. I'm going to be doing the same thing...traveling an hour to deal with someone who wants to keep telling me everything is 'normal'.

Anyways, won't know when I'll here from the new endo's office...can't do anything until the PCP refers me. More later.

Sunday, July 1, 2007

Endocrinologist Visit....Somewhat of a Waste

Well, in a lot of ways my visit to the endocrinologist was useless. I say that because she tried to tell me the same things that I have been hearing before hand. The first thing she said to me was that she didn't recommend surgery because my thyroid is only 4.1 in size whereas they don't suggest surgery unless it's 6.2 in size (i'm thinking maybe this is in cm??). She showed me the model of a normal size thyroid, and then one of what mine looked like. Basically, my thyroid has become a big useless blob. It just doesn't work. That is why I have been taking the thyroid meds since 2003. I know that removing the thyroid can cause some symptoms and problems to happen. I wasn't there for surgery. I was there to find an alternative to the treatment I have had for the last 4 years.

I've done a lot of research on my disease because it's often undiagnosed, misunderstood, etc. If my doctors aren't going to be knowledgeable as I'd like them to be about it, there is no reason that I shouldn't be. Anyways, I told her that I do my own research to be my own patient advocate. That I had seen many people use combination of T4 and T3 medicines. Let me tell you...I got the speech that her recommendation is to not do anything because my TSH levels were really good. She said that the American Thyroid Association (ATA) also doesn't recommend the combination therapy. She said that if I wanted to try it that she would have to notate that "I" asked to do so. I told her that I still felt the symptoms even with my TSH being as good as it is now. I did mention that this is probably the best I've felt in the whole time dealing with this disease, but I still am tired, body aches, etc. She proceeds to tell me that it could be other things and that it can't always be blamed on the thyroid. I'm thinking that these are the same damned symptoms I had when I first started with this disease. True, they aren't as intense as before, but they're still the same.

The endo told me that she would do 5mcg of cytomel twice a day along with my 137mcg of levothroid with the exception of Sunday...on Sunday, only half of the levothroid tablets. I wasn't able to get the meds until I returned from Las Vegas. I started yesterday and so far have not felt a difference, however, I read that it can take a few weeks to notice any changes. I'm hoping for good changes.

By the way, when I came home from Las Vegas, in my mailbox was a letter from Kaiser saying that my request to see a specialist was denied. I may put a copy of that letter here at a later date. So, I do think my doctor referred me, but only because I started this 'stink'. I think even though I got to see an endocrinologist before this denial letter, that I must refute their decision. If we don't stand up for ourselves we will keep getting the same basic care and not the appropriate care. There are MANY stories where people have died because Kaiser refused to give the appropriate referrals, treatment, care, etc. until it was too late. I'll probably share links to those stories another time as well.