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.

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.

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.

Update

Well, I had gotten a letter in the post on Friday saying that they got my request to see an endocrinologist. It also stated that I had until Monday, the 18th, to submit anything that would help in their decision. I submitted a two page letter with 2 or 3 pages of research as well. I didn't expect to hear from them as quickly. Today I got the call from the endocrinologist's office saying that they got a referral from my doctor. I'm thinking "my doctor?"..."yeah, after I go over her bloody head!" So I have an appointment this Friday morning...FINALLY. I'm just tired of feeling lousy all the time.

To any of you that read my blog, I apologise in advanced for my repetitiveness. One of the things that seems to happen to me with my disease, is the lack of remembering bits of conversation, repeating myself...sometimes I feel like I'm getting Alzheimer's. :/ Anyways, will post on Friday as to outcome of visit to the specialist.

Alright....I just had my newest post yesterday in regards to my annual ob/gyn visit. For those who read it, and read it to the end, you'll know that I mentioned the new weight loss drug that comes out today called Alli. I had asked my ob/gyn if she thought it would be ok to take because it does say if you're taking medications for certain things, one of being thyroid, to ask your doctor.

I just checked my email and opened up my newsletter that I receive on thyroid from about.com. One of the first subjects addressed was the new weight loss drug. I thought it fitting to put the link addressing the subject/concerns for those with hypothyroidism.
http://thyroid.about.com/b/a/257403.htm
The drug in it's prescription state, was known as Xenical. I thought I would just point that out as I couldn't remember when I wrote my last post.

There was one more article that interested me and I KNEW I had to share it. http://www.nytimes.com/2007/06/13/opinion/13carlat.html?_r=2&th&emc=th&oref=slogin&oref=slogin
I want to know what you all think of this article after you read it. I know that I'm damned well pissed about it all. It's not like I didn't know that the drug industry didn't have some kind of control over the medical field. But the extent is unbelievable. This article is in regards to people in the medical profession being required to take courses to keep their licenses up-to-date. I won't say much more as to let you have your own opinion regarding the matter. Isn't it a wonder we don't always get the proper treatment?

UPDATE: I just saw Alli while I was out at Walmart. The price $49.63, they also have the Alli Diet Book that's supposed to have over 200 recipes so you can follow the diet for around $14.00. I don't know if I mentioned it or not, but you can't eat more than 15mg of fat during meals. At least I think it's per meal...don't quote me on this. But it looks like Alli will cost around $50 for a 90 capsule bottle....the starter pack comes with the 90 capsules, a case for your daily pills, and the diet plan. If anybody tries it let me know how it works out. I'm tempted, but at this stage, I think I'll just keep cutting back on my calories and working out without the help of a diet aid.

Moving Forward, Slowly, One Tiny Step at a Time...Damn It

Seems like I go many days without posting. Sometimes I'm just too tired to even think what to write about. As you know, I am very frustrated with the current condition of my health, and would like for just once, to feel 'normal'. By normal, I mean 'well'. One day where I'm not tired, or easily irritated, or on some days, depressed. A day where I have the energy to do what needs to get done during the day...the energy I had once long ago in my youth.

I know that that is impossible for me. I have to live with my condition for the rest of my life. I have accepted that. What I don't accept is how I am not getting seen by the right doctors because of my HMO. I shouldn't have to practically beg to see a thyroid specialist/endocrinologist. I wonder if the primary care providers just decide that they know what's best. If they know how you feel, better than you do. I emailed my PCP a few weeks ago, and asked if I could see a specialist. If she could refer me to someone who would even be willing to try a different course of treatment. Of course, I might have mentioned it before, but her email came back saying she needed to see me for the lump in my throat because she didn't think it was thyroid related. I had told her of the research I did and how with someone who has been diagnosed with Hashimoto's, like myself, needed to be between .03-1.0 to feel their best. My current TSH is 1.3, and I still feel rundown most days. I only mention these events again because it leads up to my last doctor visit.

I went in for my annual cervical smear. You know how fun that can get being spread open with the speculum (hint of sarcasm there lol).

Closed
Opened

As you can see, I'm not above putting photos of things that intimidate people. lol Thank goodness, I didn't get tense like last year. She had to repeat inserting the speculum two or three times. lmao



One thing I got to say, I have only run into two doctors that I have really liked in dealing with Kaiser. One, is my girls' pediatrician, the other, my ob/gyn. Only a little disconcerting thing, is she looks a bit like my ex mother-in-law. lol But she's a lot nicer. I told her that I had several questions for her if she didn't mind. She said not at all and asked me to proceed with my questions. Here's a couple of questions I had (because I'm having trouble remembering more than two right now lol):

Did she know or could she refer me to someone who knew more about thyroid?
Could she tell me about an ablation (surgery to stop monthly cycle)? because one thing I deal with since my thyroid issues started and the tubal in 1999.

She told me that I would have to ask my PCP to refer me to a specialist. I told her that I have tried for 2 1/2 yrs. She asked me if I insisted. I said that I didn't exactly INSIST, but I did asked to be referred at least two times. She said that she was not a thyroid expert, but would look at the lump (I mentioned it to her). I had explained that I was tired all the time and lacked energy. I need a nap almost daily to get through the rest of the day. She had asked if I had ever gotten my Free T4's done. I said that I had not....I have not had anything more than a TSH since I got here. I mentioned that I used to have the whole panel done with my old specialist. Unfortunately, she wasn't allowed to order a Free T3 which is something that needs to be looked at as well. She did, however, order a CBC with differential to check for the possibility of anemia. I have only gotten back the results for the Free T4, but not the CBC yet. I thought to myself, she is LISTENING to me...how unusual...and that she's doing everything on her end that she can do.

As far as the ablation goes, that's where they laser your endometrium wall so that you have nothing to shed during the monthly visitor. She told me that it was not 100% because nothing ever is. She asked if I was interested in this type of IUD that is inserted to prevent periods for 5 yrs or was the ablation something I had thought about awhile. I told her that the ablation is something I had thought about awhile. I said that if I had my choice, the parts would just be removed, but I know it's not going to happen just because I want it done. She says to me, well, let's see how quick we can get it done. First, there will have to be an ultrasound done, and then, some doctors require a biopsy. My ultrasound is in August, and she's trying to have a doctor do it for me in September. I know how difficult it's going to be to get someone to do it because most of the ob/gyns at that particular Kaiser have closed panels and little or no O.R. time. I forgot to ask her why she wouldn't be doing it, but I don't think I'm bothered by the fact that it'll be someone else from there.

I was just glad that she didn't talk me out of it, or tell me that it's just not something she's willing to set up for me. She answered all of my questions and concerns without rushing me or making me feel stupid about being interested in my own health care.

Anyways, I emailed member services and told them my dilemma and to give praise to the two doctors I really like. They both listen, address your concerns, and don't make you feel rushed. In the world of HMOs, that isn't very common these days. I'm supposed to be contacted by someone from my HMO regarding my issues...haven't heard from them yet.

OH! I just remembered another question I asked her. There is a new weight loss pill that is the ONLY one approved by the FDA here. It comes out tomorrow. It's called Alli aka Orlistat. It's a 60mg pill that's taken 3 times a day right before you eat a meal. She said that she hadn't heard of it, but I explained what it was supposed to do. She asked if it was a fat blocker because she knew of one that was a prescription and she had taken it herself. I said that I think it is because it's suppose to block a percentage of fat from going into your system to be broken down. She told me that her side effects were bad cramps. She also said that you can have trouble with being what I will call 'poo' incontinence. lol That is NOT a pleasant effect I'm sure. She said there is no miracle cure or sure fire way to lose weight. Just have to exercise and choose the right foods. She understood that I have to work 10 times harder than everyone else just to lose weight. I was going to buy the pills until she told me things. I don't know whether I will still buy or not. I read up on it a bit more last night...it is HALF the dosage of the prescription pill. The prescription pill was 120mg. The 'treatment' effects as they call it are cramps, 'poo' incontinence, and gas with an oily discharge. lol See, the fat doesn't breakdown, so it comes out in oily discharge, oily stools, etc. On the Alli website myalli.com it likened the oil to that on pizza. lol

So....you can see that I have a LOT to think about. I'm glad that at least one thing I want done is moving forward.

Frustration at it's Finest

I emailed my PCP to see if she would refer me to an endocrinologist. I received a reply stating that she didn't think the lump had anything to do with the endocrine and that she needed to look at it first. I managed to get an appointment on Monday. I went in, and she said that it was just a swollen lymph gland. She said not to worry about it unless it started growing. I mentioned to her about the fact that I still have symptoms from the thyroid. Still exhausted a lot which requires me to take a nap everyday just so I can function for the rest of it. She asked if I wanted to go into a sleep study because maybe I have sleep apnea. What the hell? I don't snore. I know that for a fact because Steve has only heard me do it once, and says that I don't really do it since that one time. I also told her that I keep up on thyroid issues because you have to take an interest in your own health and health care. I told her that it was suggested that patients with Hashimoto's be at a .02 or even around .01. She said that that was not good. It would cause me to become hyperthryoid and cause heart troubles. She said that my level now is good (it's a 1.3). A 1.3 tsh level is around what 'normal' people have. Hashimoto's patients aren't 'normal' anymore and therefore, the new levels suggested. Needless to say, I didn't get a referral to an endocrinologist. Been trying for over 2 years now, and I am pissed off!

I hate Kaiser, I dislike my doctor, and I'm damned frustrated. The doctor did say she would email the endo to see if it's wise to increase meds since I'm still suffering symptoms. I hate that no one really knows squat about thyroid disease, and the ones that do, I can't see because they are not part of my HMO.

I saw a show called mystery diagnosis the other night, and a guy had been complaining about major stomach pains. He kept going to the doctor, and they told him it was ibs or whatever. Then he had rectal bleeding and they did a sigmoidoscopy (not sure i spelled that right) and told him his colon was fine. That particular procedure only goes part way up your colon. So they attributed his bleeding to hemorrhoids. I could already tell, by this point in the show, the man had some type of cancer. I thought it would be stomach cancer. The doctor STILL attributed it to hemorrhoids even after he passed out and was covered in blood. The man's insurance changed so he went to see a different doctor. By this time, he had been suffering for two years. They did a colonoscopy and told him they found a mass...the mass was on the opposite side of where the previous procedure had been done. He was in Stage 3 colon cancer. He managed to hit the 5 yr mark as there is only a 60% percent chance of making it past that. What's ironic, is that it's a Kaiser doctor who found it. This whole situation is my worse fear....I will fall apart or something will happen, like that of this man, before they take it seriously.

Needless to say, even though I have to stay in the system of this crappy HMO, I am planning on changing doctors once again.