Monday, December 10, 2007

I did my second round of labs after a dosage change. My TSH is now at 1.6. Prior to starting the Cytomel it was 1.2, and the 1st lab after taking it was .089. I know I need to be at around 1.0 to feel somewhat well.

I guess it's somewhat my fault that my TSH is now higher than when I began Cytomel. My memory is terrible, and no matter what I do, sometimes I cannot remember to take the medications. I get them all taken during the day, but usually I'm cramming a Cytomel and a Levothroid down my throat right before bed. I have tried setting alarms for different times of day, a 7-day pill case, and who knows what else, but I still have trouble remembering. Bad part is, one of the keys to feeling well with thyroid disease is to take your meds correctly.

On top of all this, I'm having my surgery on Wednesday, and I feel like I'm getting sick. I've sneezing and having a bit of a runny nose today. I hope to maybe sleep it off a bit tomorrow, and that it's just a temporary thing. The last thing I need is to get so sick that I can't have my surgery on schedule, and have to wait another THREE months to get one scheduled.

Sometimes I wish I didn't have this thyroid anymore. It's just useless, it drains me, and I'm sick and tired of sick and tired. A cliche' I know, but a true one nonetheless.

Friday, November 16, 2007

Health Update

Been suffering from some back pain for about a week now. Not sure what is causing it other than all the weight I'm carrying around. Even though I'm quite heavy, I usually don't experience backaches of this nature.

I did have a Lupron Depot injection a few weeks ago to help with the thinning of my uterine lining, and to help stop the endless bleeding that I from taking the birth control pills they put me on for the same purpose. After a month of bleeding, it finally stopped. I'm wondering if the injection has anything to do with the backaches. I know that bone loss can occur from it, but to what extent? I've just been taking ibuprofen or naproxen when it is at it's worse. I just hope the backaches stop soon.

The ablation surgery is right around the corner. I have the pre-op appointment on the Tuesday, the 20th. That's when they'll tell me what I need to do and take a list of medications, etc. I know that with Cytomel you have to tell doctor or dentist that you're on the medication. Not so for the Levothroid. Not quite sure what they're going to tell me to do. I know without the Cytomel, I'm a lot less functional.

Been struggling with the lack of energy and weight thing again. But then, what is new? I know that I have to try to make some effort to exercise, but it's so difficult when you feel like you have just had every last bit of energy zapped out of you on a daily basis.

I guess I can be grateful that I don't have ALL the symptoms I had back in the early days of my disease. At least I know I won't want to just fall asleep at the wheel.

Friday, September 7, 2007

September Is Thyroid Cancer Awareness Month

I got my lab results in the mail a day or two ago. I had been on my scrip of 2-5mcg of cytomel a day along with 1-137mcg of levothroid for about two months. Anyways, I was able to look up my lab results via the internet, but it didn't have enough information for me. Most of my lab results online come with some kind of notation. For some reason, that's not the case with my pcp and my endo. Both of whom I really don't care for. I mean it's great that my pcp did some tests when I told her that I was still suffering from some symptoms plus a mean case of indigestion. I GUESS my endo was ok for going along with my decision to go on combination therapy even though she was against it. But, you all KNOW I'm not a fan of Kaiser and most of their doctors.

My lab results are these:

Tri-Iodothyronine 128 70-200 (ng/dL)

T4 Free 1.2 0.8-1.7(ng/dL)

TSH, 3rd Generation .086(*) 0.2-5.5(uIU/mL)





In the letter it said that there's too much thyroid replacement and to do what I've been doing with the exception of changing half tablet of Levothroid on Saturday AND Sunday. Then I'm to get another level check in 2 months (around Nov. 2 it states).



Before going on the Cytomel, my TSH was 1.2, and I knew that I wanted to be at around 1.0 or just under. But because I'm under more than I should be, I'm feeling rather tired again. Actually, I don't know if that's the true cause, but with too much thyroid replacement, a person who is hypothyroid can become hyperthyroid.


1. Stand in front of a mirror




2. Stretch neck back




3. Swallow water




4. Look for enlargement in neck (below the Adam's Apple, above the collar bone)




5. Feel area to confirm enlargement or bump




6. If any problem is detected, see an doctor

Monday, September 3, 2007

Labs Are Back, Thyroid Still Whack! LOL

I've got a lot going on in my life lately. Been feeling rather tired but I'm not sure if it's because of my thyroid, being 5 hours in the heat for a couple of weekends in a row, or both.

I had my TSH reevaluated on Friday. When I read my labs on the website for Kaiser my T4 was 1.2 and as for my TSH it said See Gen 3. Of course I have NO idea what this means so I researched it. I guess it's a more sensitive test for thyroid antibodies. Anyways, don't know if my doctor is going to comment on the results or if I'm going to get the results in the mail. All I know is that I want to stay on the Cytomel that I was on for the last two months as well as the Levothroid I've been on the last 3 years. The combination therapy has worked out a hell of a lot better than just the T4 meds alone. I don't have to take a nap everyday just to 'make it through'.

Wednesday I go in for my endometrial biopsy. They asked me if I wanted Valium, but I'm afraid of addiction, so I said no. It's funny because when I went to pick up my thyroid prescriptions they said I had an extra one. I asked what it was for and when I found out I told them that I didn't want it. I had a biopsy of my cervix before, but I didn't feel anything from it really. Of course, I'm a lot older now, and my thyroid has racked my body with all kinds of lovely symptoms. Things I use to be able to handle I no longer can. For example, there was a time I would NEVER sunburn...HONESTLY. I'm half filipino, and it has helped with that. But over the last 8+ years, I don't tolerate the sun well. As for my skin, well, it just gets fried.

I want Steve to come with me, but when he asked me, "Why? So I can sit and wait around?" I decided it was FAR better to go alone, despite the fact that I'm a bit nervous and that I could be in pain afterwards. Funny how women are always expected to do things on their own or still do whatever they do even when they are sick. I can only imagine what will happen when I have the surgery.

Everything is starting to get to me now. The court date with the ex, my thryoid problems, the biopsy, and there's not a soul to talk to around here. I guess that could be my fault, but I'm very particular as to who I have as friends. Just haven't really found any here.

Thursday, August 2, 2007

Umm...I Don't Think This Is Exactly A Magic Stick

I had a pelvic ultrasound done last Friday. I had this done because I want to get a uterine ablation done. The purpose of this surgery is to stop heavy monthly cycles by ridding of the cycle all together. Here is more information on the procedure: Endometrial Ablation I just wished that they had told me that, not only would this ultrasound consist of outer, but inner ultrasound. What I mean by 'inner' is the 'magic stick' they manage to insert in your hoorah lol You know, like when you have your first ultrasound when you're pregnant?

Anyways, it seems that ever since I had my tubal ligation and my thyroid problems started 8+ years ago my cycle has become ridiculously heavy. It was definitely to the point where I worried about what clothes to wear and if I had enough feminine products on hand (I always bought the max pack). I'm sure this is MORE than anyone EVER wanted to know about me. lol

My OB/GYN called and left a message saying that my ultrasound was fine. She also said that if I still wanted the surgery that I would now need a biopsy. Most doctors will not want to do this procedure without the aforementioned ultrasound and biopsy. I've had a biopsy before, so this should be relatively easy and painless for me. I guess if all goes well they will start me on some kind of medication to thin out the uterine wall (which, by the way, is what thickens up and causes Aunt Flo to visit lol). I was told that between all the tests and such that it would be at least two months before the surgery. Here's hoping that everything goes as plan, because quite frankly, I'm ready. I didn't go into menopause at 40 like my mom, so this is the next best thing.

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.

Tuesday, June 19, 2007

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.

Friday, June 15, 2007

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.

Thursday, June 14, 2007

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.

Wednesday, June 6, 2007

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.

Tuesday, May 29, 2007

Update Last Doctor Visit

So I went to the Head/Neck surgeon on Thursday. Asked me a bunch of questions, felt my neck and didn't feel the lump. At least I don't think he did, though he said he did. lol He put that skinny tube w the camera down my nostril and into my throat to look around. He asked me if I've been coughing lately. I said that I had for maybe about 2 weeks. It's probably longer than that, but I haven't kept track. He said he could see the irritation in my throat from coughing, but saw nothing else...no tumors, etc. This 'lump' that I feel and still here the clicking from is under my skin. It's either just above the thyroid or on the thyroid itself. I feel like nothing is resolved for me.

Steve says that it's good that there's nothing wrong. I told him that it something is STILL not right. I'm still very fatigued all the time...taking a nap almost everyday. I had to take a nap today just so I would have enough energy to work out on the treadmill. I hadn't been on the treadmill since the trip to Hawaii. Today my goal was to be on it for 2 minutes, but because I was close to doing 3/4 mile, I pushed myself that extra 1:58 minutes to make it exactly that.

I still am pretty frustrated with my HMO, but they haven't heard the last of me yet. I'm going to ask to see an endocrinologist next. I have been trying for 2 1/2 years to get referred, but no such luck. I think since the current PCP (primary care provider) has referred me for all these other tests, she'll probably refer me for this. I'm sure they'd like me to shut up and go away. lol I want to see an endocrinologist who treats on symptoms and would prescribe Armour (pig thyroid hormone) if it might help. Finding this certain endocrinologist is going to be difficult.

Next appointment up...my ob/gyn. I'm going to ask for a uterine ablation. That time of the month has been hell on me between my tubal ligation and the start of my thyroid issues after the birth of my last child in 1999. If I had my way, I'd have a hysterectomy. But I think that would be highly unlikely for two reasons: one, they don't do it just because you want it, and two, even though I'm a stay at home mom, I can't afford to take that recovery time that it requires. Steve is gone 12 hours a day or more, and I am the one responsible for all things concerning house and kids. June 12th is when that appointment is up, and I'm trying not to schedule anything else until then. Well, maybe try to see about the endocrinologist. Or I wonder if I should ask my ob/gyn if she knows someone good. I just don't know.

Tuesday, May 22, 2007

I finally emailed my primary doc a week or two ago stating my frustration and how I still felt like there was something in my throat that may or may not be affecting my left ear. The left ear has some discomfort and has for a few months now. The feeling in my throat had always been on the left side, but now I've discovered something.

I keep hearing and feeling a 'clicking' in my throat. Steve could even hear it at one time. I started to feel my throat and discovered a lump on the right side of my throat. Searched online to see what could be the cause and most, who say they have had that experience, say that it involved their thyroid. Great, something else in my life with Hashi to look forward to.

I have an appointment with a head/neck surgeon on Thursday in a city that's about 45 minutes from here. Another wonderful perk of dealing with my HMO...Gotta stay within their system which sometimes means going to another city to a Kaiser that has the equipment to do more extensive testing. One of the things I hate about going to that appointment on Thursday is not being able to see all of the kids' award ceremonies. I almost called to reschedule, but I think I'd be helping my kids out more if I was taking care of myself to make sure I'm around a long time to see them grow up and have kids of their own.

Got some other medical issues I'm dealing with as well, but one thing at a time I guess. I'm 40 years old and I'm falling apart...lol

Friday, May 11, 2007

What If?

Today is not one of my better days. It's a struggle, even now, to keep my eyes open, to move around, to do anything at all. Of course this is nothing new as it has been this way for the past 8 years. Some days are better than others. I didn't go to sleep until 3:30 a.m. this morning and had to be up at 7 a.m., and when I woke up, I knew that I would more than likely need a nap. I took the kids to school and did my usual thing on the computer (check emails, sites I thought of visiting, etc.). I took my 137 mcg of levothyroxine,and when I was ready for my nap, I set the alarm on my phone to wake me as I usually do before napping. That way I don't have to change the alarm on my ihome clock radio that's set for school days. I fell asleep pretty quick and I started having weird dreams. I awoke from sleep and dreaming a little disoriented. I had wondered why my phone alarm had not gone off. At first I thought, oh no, I'm very late getting the girls to school....then I thought, wait a minute, is it Saturday? And do I have only a half hour to get my stepson to the ball field for his baseball game? I honestly could not remember what day it was and was out of sorts for at least 5 or 10 minutes. Finally, it came back to me. Today is Friday. I was supposed to be up an hour ago(10:30 a.m.) so that I could do errands because Friday's are the kids' early release day from school (1:30 p.m.) . I got ready hurriedly and did all the things I had to do before leaving in 15 minutes. I had just 1 hour and 15 minutes to run those errands. I was back before 1:15 p.m. All this time I wondered what would have happened if I didn't get up on time and the kids were home and couldn't get in the door? What if I were really late in getting them to school? What if it IS Saturday and I had a half hour to get to the ball field? Just a bunch of 'what ifs?'

Even after that 2 hour nap, I still did not feel rested. The kids were home and it was all I could do to stay awake. The kids decided to go to the park. I thought I would just go upstairs and rest in my bed. I ended up falling asleep for another hour and a half. When I get like this, I feel like I'm not as good of a parent as I should be. I SHOULD be able to stay awake and do things. I keep asking myself, why do I always have to be tired? Is one day of feeling 'normal' too much to ask. To be honest, at this moment, I STILL don't feel rested....I could sleep all day long if someone let me. But I can't...it's time to be a parent even when it's taking everything I got in me right now. By the way, the phone alarm didn't go off because, in my fatigue, I set it to 10:30 p.m.

Thursday, May 10, 2007

For those of you that have already visited my blog you know that I have been ranting on about my medical treatment or the lack thereof. My ramblings and whatnot became more rantings so I decided to devote a blog just to my life as a person dealing with Hashimoto's thyroiditis.

Hashimoto's thyroiditis is an autoimmune disease that was named after the Japanese doctor that discovered it. The suffix 'itis' means inflammation, therefore, thyroiditis is the inflammation of the thyroid and. In Hashimoto's thyroiditis, the immune system attacks the thyroid gland because it thinks it's a foreign object. Your thyroid then doesn't produce enough antibodies, hence, becoming hypothyroid. It begins to damage the thyroid causing a multitude of symptoms such as weight gain, fatigue, body aches, irregular menstrual cycles, brain fog, and many others.

My life with Hashi began eight years ago after the birth of my last child in 1999. I had gained weight rapidly and was tired all the time. It was almost like the first few months of pregnancy for me, as anywhere I laid down, I could or would fall asleep. My coworkers (at an old job) knew that I was tired all the time and blamed it on other things (but we won't go into those other things lol). Anyways, with our medical insurance we could get an extensive physical. I got labs done, eyes examined, etc. When I got back my results everything was 'normal' with the exception of a small heart murmur. He was the second doctor in my life to tell me I had that, and I had been told both times to have it checked out. Most doctors, when I tell them that story, tell me that they didn't hear it or if they did it was faint. I haven't gotten it checked out to this day, and I've had dental work without antibiotics and I'm still here. lol As months went on, I started suffering other symptoms like dry skin, my hair was falling out and not like the normal amount...excessive amounts, eat very little but still gain weight. The worse part is when the brain fog kicked in. My x swore I said something when I swore I didn't. People would say that I had just told them something. I was forgetting bits and pieces of conversations or things I've said so I was repeating them. I had trouble focusing on the most basic things, not being able to remember where I put things, and at times, I really thought I was going out of my mind. I also became almost 'comatose'. When I felt like that, I really could not function. I had three kids to take care of, so I forced myself to function. What scared me most, is that comatose feeling came at times when I was driving. I just wanted to close my eyes because they were so heavy. But I didn't. I just turned on the air conditioning, and forced myself out of that feeling. It was hard, but I knew that if something happened to the kids because of me, I would never forgive myself.

In 2002, my x and I had separated. I was still on his insurance as he could not take me off until the divorce was final. I decided to go to a specialist because a previous doctor, who had found a kidney stone after years being told I only had UTI's, suggested I come back to have thyroid tested. But because they stopped taking that insurance, I couldn't go back to her. Luckily, I had a PPO and could go straight to a specialist without a referral. This is where things started to change. I had all the thyroid tests done, and it was being sent for analysis. The doctor went ahead and put me on 50mcg of levothyroxine. When I went back for my follow up visit he told me that I had Hashimoto's. FINALLY!! a diagnosis....it was a relief.

I can tell you that just from the initial thyroid med dose I was feeling the difference. The doctor did up my dosage because of the labs. However, I did eventually lose the insurance and had to pay out of pocket. Because of that, I wasn't able to go when needed, but I was able to stay on that dosage of meds.

When Steve and I got married, and I moved out here in 2004, my symptoms that once dissipated a bit, were coming back...some even stronger than before. I started seeing the doctor here. Every time I have labs everything is 'normal', but luckily, I changed to a second doctor who increased my dosages. I would start feeling better in the beginning, but anyone with this disease knows that the 'right' dosage needs to be found. The dosages were only right for awhile and that's when my dosages would increase.

Current doctor says that once diagnosed with Hashi, that patients need to stay at 1.0-2.0. I am now at 1.3, I'm a bit better, but I STILL don't feel 'right'. I've joined thyroid forums and groups, and I've read up and they say for optimum results we should be at .02 or even .01. But what do you do when every doctor you find goes with the old school way of treating the thyroid...sticking to the lab values that are keeping you sick? It's no wonder many people go misdiagnosed or undiagnosed every year. Isn't it bad enough that millions of people suffer from it and don't know it? At least give us, who even suspect it could be our thyroids, a little credit.

Apture