1st Block & insights afterwards

I've been sick with a really bad cold (and the oak & other trees dumping pollen hasn't helped) since last Thursday. At first it seemed like just allergies, then my ears were plugged up. On a trip I had to go up a grade (maybe 700 ft or so) on Friday & it was then I realized how blocked up my ears were, coughed up some wonderfully green stuff  knew it was more than just allergies. By the time I got to the doctor's, I was really sick. I needed  to just go home & go to bed, and as soon as I was  able, I got home  & in bed. I haven't had a cold like that in a very long time. I get the allergies every year about this time, so after having some problems breathing Thursday late afternoon, I figured I'd go home, take some Zyrtec & be OK the next morning - maybe not 100%, but certainly not how I felt.

The PA at my doctor's asked if I wanted to see the doctor. They don't have masks at that office, so I told her unless there was something he needed to talk to me about, I'd be OK. (I didn't want him to catch this crud, or anyone else being exposed that didn't have to be.)

Pain's been pretty bad too. I pushed it in the pool with my long fins that are designed for moving from point A to point B, and definitely that didn't help. I pushed a bit too far, not knowing this cold I had was already coming on.

I'm supposed to start my Hep. A or B series of shots this week, but I already now that although I'm feeling some better, that I'm not out of this yet.

I was already a bit concerned about the Plaquenil perhaps being a drug that could depress my immune system, with one that's already been sluggish for years. The Rheumi said he was concerned mostly about my stomach & especially my eyes. So far, so good with that, which was a bit of a surprise, yet I do take antacids pretty regularly & from what I read, taking those together can basically deactivate the Plaquenil, so I started jogging my meds so I'm not taking the Plaquenil within 2 hours of taking the Tagament. It seems to work well.

I'm not sure yet about the cold medicine, but figured if it put me back a bit, I felt so yuckie that it really didn't matter when I was at my worst. I pretty much slept, sweated & stayed in bed for the past week.

I know I need to send him a list of what I'm taking, so I'll have to add the cold & cough medicine to the list. I stopped talking the vitamins & supplements altogether when I was so sick. I know magnesium is another thing that can interfere with the Plaquenil, so had enough on my hands just keeping the antacids & cold medicine as far from the Plaquenil as possible.

Well, I'm starting to feel better. I could take a shower & not be soaked with sweat when I got out of the water, so I'm feeling better. The lymph nodes in my neck seem to have settled down.

I forgot what I was going to talk about to the doctor altogether. My right breast has been, for about a month now, quite a bit bigger than my left & it feels heavy, and has for some time now, roughly a month or two, but I've had that before with colostrum production, and it's gone away, butt his time it hadn't & I'm not producing milk or colostrum, like I have in the past, so either my hormones are still bouncing around or something else is going on.

It's embarrassing to have something new going on every time I go to the doctor (& it gets old being tested over & over with really no answers, and most of this comes & goes and we never really seem to figure out why, or at least no new answers anyhow and nothing to do but to let it pass.) 

At least I can think a lot straighter than I could before. Mucinex, Corcidin and a week of rest are great for clearing up the crud! I hadn't had to use it in a long time & my old rule is if that doesn't work (or the herbal equivalent to clear up the crud), then I take Nyquil, which I gag on, but if that doesn't clear up a bad cold,  then I know it's time for some antibiotics & to see the doctor.

 I've been on so many antibiotics that I'm leery to take more without a break, as it can lead to  clostridium difficile, which is a particularly nasty intestinal infection that I certainly don't want to get started.

I discovered the dentist gave me yet another quinolone antibiotic for my tooth issue, which I wasn't happy about because of the connective tissue issues, which I think were stirred up again by the antibiotic she gave me, not to mention the risk of the intestinal infection that's generally brought on by that class of antibiotics, along with the connective tissue issues.

Before all of that, I was feeling pretty good, in fact better than I had been in a while, so it seems the Plaquenil is helping.

I did read a few places that it can apparently create a cough in some people, or that there is a question about that, although haven't had the energy to really check that out & definitely want to stop the RA & not stop taking it on a false alarm over something. If the congestion/cough wasn't starting to clear up, as it usually does, I'd be concerned & would definitely call my rheumatologist, but so far, so good. It's not cleared up, but it SO much better than it was, so I doubt there is anything to be worried about. 

I felt like I had a fever, but my old thermometer was giving me low readings & the new one I got was the same as far as readings & not anywhere close to the readings at the doctor's office. Yes, my temp is a bit low, but not in the 95 degree range certainly & I'm pretty sure I had a fever through the worst of this, which for me, even with a low thyroid level, which could be the reason I got so sick, I'm at least in the 96-97 range & I can be burning up with fever at a normal temp. So, I need to check the batteries &/or buy yet another thermometer. I've seen ratings from others about some thermometers reading low, which for health products simply shouldn't be going on. The QC for many thermometers on the market seems to be lacking, so I hope I can either get a battery for my older ear thermometer, or get another thermometer that reads accurately.

My endocrinologist dropped my thyroid level when my levels were still bouncing from the Kenalog, so he's got me on far too low a dose now. I don't think I need to quite be at the dose I was, as I am getting older, but staying "within normal range" for me is too low, I get infections & have all the symptoms of someone with low thyroid levels. I wasn't feeling great when I saw him & forgot to tell him I'd been upping my dose occasionally on my own before my last visit. I'd left a message with his nurse, but it seems those don't get through, & I'd had so much going on in my head with the Hep. C diagnosis & so many concerns about that, that I was really not myself.

I'm beginning to think that antibiotic therapy might not be such a bad idea - with antibiotics that are safer to do this with of course. First things first though, I need to get my thyroid levels back up (my TSH will be low, and there are risks with having a higher than normal thyroid (T3 & T4) levels as well, but quality of life becomes an every day issue, and that is likely why I've had so many infections back to back. There are risks as far as bone loss, which I have anyhow (yet infections don't help that either - especially if I'm sick enough to not get out of bed for long stretches, being incredibly tired/sleepy all the time, etc.)

I'll have to talk to my PCP this week I suppose & see if we can't get that straightened out, along with the breast issue & we'll have to put off the Hep A & B series for now until we get these other infections under control & get my thyroid level where I can function & think clearly again.

If they don't do it, I'll have to just be careful & do it on my own & let them know when I'm feeling better what I've done. Interesting as my endocrinologist was the one who brought it up to me many years ago & directed me to an article about those with a history of Graves', thyroid storms, etc. needing to be on a higher level of thyroid outside the "normal" lab values, we bumped my levels up & I was much better for it for years.

Thinking clearly is also affected by thyroid levels & if  mine is "normal" it's clearly too low. I've had this crap most of my life & after roughly 50 years, you'd think we'd have it straightened out by now, but the Kenalog (& most, if not all corticosteroids) bounce my levels  for quite some time. I think I'm out of the woods with that now. It's been about 2 years since I was given any & that's about how long it took for my body to stop bouncing the last time I was given Kenalog (other than a dentist using the paste, which shot it up there for a little while.)

At least I'm starting to feel like myself again. Not breathing well & having to take an extra dose of thyroid here & there I think helped as well. I'm starting to get back on track, now to just get the doctors up to speed & get back on track so I'm not lethargic & can think clearly, etc. again.

I'm not sure what that does with the Plaquenil levels, but I'm sure we're going to have to talk about that, as it does seem to be helping, despite this latest infection (& those are almost always delayed, along with my immune response time, especially with  my levels being low for me.)

It could be I have to go back to my old dose again, or close to it in order to get me back to "normal". I do know that keeping them where they were is an invitation for infections, severely foggy thinking & higher pain levels overall. I didn't keep track of exactly how much I took & when, but have a pretty good idea of the average dose - I know from past experience that we can do better & keep the infections to a minimum. I know my immune response is still slow & not what it should be (I had a Hep. B series years ago & I don't think I ever developed the antibodies I should have had for it & certainly don't now, yet that was before we upped my levels & I started feeling a LOT better.)

I may have to start back on my old levels, or slightly below those, then see how I'm feeling from there. Having to be in heating blankets &/or heating pads isn't my idea of a life. I started that in my 20's, before we discovered the issues with being post Graves', and when we got that straightened out, I didn't need to be wrapped head to toe in heat & being hypothermic after being in the ocean in a wet suit when everyone else was OK wasn't my idea of being OK, yet back then, the doctor I was seeing wasn't an endocrinologist & hadn't a clue as to how to treat thyroid issues & he wasn't an endocrinologist. I also had chronic infections back then as well as kidney stones, just like this time around with changing doses.

It's VERY clear to me that corticosteroids throw my body's system into a "hormone hell" as I call it... something I've told several doctors ought to be added to the medical dictionaries.

I'll be glad when we get this stable & yes, in the "high" range, along with the bone loss, etc., but at least being able to function & without as many infections & industrial-strength antibiotics that cause connective tissue damage. It might shorten my bone life & I'll have to be sure to eat better & more regularly, yet when my levels are as normal as possible for me, I'll have an appetite to go with it, as I'll be exercising as well & hen I do, I don't have the aversion to food like I have had. The few extra doses have helped, but I need to be on a regular thyroid replacement dose every day that I only change if I know I'll be in extreme heat, as my body can't adjust on it's own. My thyroid gland is long gone & I've learned what works for me. I recall reading the article (I think it was in the NEJM & there was one in the JAMA too if I recall correctly?) That was a long time ago, but it enabled me to do a lot more than I had been able to do & I wasn't in nearly the amount of pain I was in & it should bring those levels down again too.

This last month has been pretty rough. I hope others that have had their thyroid irradiated can learn from this as well, as it's not a picnic & you have to have a good endocrine doctor that understands thyroid issues & will work with you on the best levels & medication(s) for you. I take Armour thyroid, yet I know that isn't the answer for everyone. You have to keep your own records, try different thyroid replacement at different levels, which is no fun, as the half-life is roughly a week, and things like allergic reactions etc. can be delayed & your immune system can be delayed, so if you have an infection and your doctor(s) tests you for an infection & is looking only by labs that show your immune response (such as a white count, etc.), by the time an infection does show up on your white count (CBC), you could be in the hospital.

I've been there, done that & have no desire to ever go back there again. I had a doctor tell me that I didn't have an infection, it was "in your head", etc. until I was hospitalized with borderline congestive heart failure, as a result of my thyroid being so low from a kidney infection and renal blockage that darn near killed me, that had me throwing up for over a month. The doctor at the hospital told me when I was admitted that if I hadn't been brought in, that I had likely only a few hours to live. I was in my 20's! The same doctor was part of an HMO and refused to send me to an endocrinologist, THEN when I got out, he put me on too high a dose of thyroid, then medications to slow down my heart rate, sleep, etc. & I would up in the hospital again, that time with a nearly fatal  adverse drug reaction. 

If you're a thyroid patient, especially one whose has radioactive iodine, be sure to get connected to a VERY good endocrinologist, or a doctor that understands & listens to your concerns, keep a journal & if you are facing radioactive iodine treatments, PLEASE do your homework on what you are geting into!

If I had to do it all over again, I would never have taken the 131I. My mother & I were told if I didn't have that treatment at the time, I'd die. I don't believe that to be true at all, especially after chatting with so many others who have ongoing medical problems as a result, and too were told the same story, and treated by the same group of doctors, who admittedly were doing "research" - yet when I went to get my records not even 2 years later, they were gone. They were in California in the late 1970's to early 1980's, then went to Utah, then to Florida. After that none of us ever figured it out, but interesting how roughly 30 of us who'd been treated by the same group were all given the same song & dance, and how they moved on & then disappeared. I've never  been able to find any records, nor where the others, not only of my procedure, but of those "doctors", or of any FDA or other approvals to do the research they were doing - nor could the other post-"treatment" patients I've been in contact with over the years. We were the ones who met on email listservs for thyroid disorders, "Fibromyalgia", Chronic Fatigue Syndrome", "Chronic Pain" & so on. We were the few who found each other online about 10 years ago. I have to wonder how many others there were that weren't online, or thought they were all alone in this - they certainly weren't.

Radioactive iodine (131I & other isotopes) was used before then & is still used today, only not 2 treatments in 2 months & certainly not at the doses we were told we were given.

If I had it to do over again, I would never have taken the radioiodine. Back then doctors were like gods & were rarely, if ever, questioned. I don't believe I ever needed the treatments. I was postnatal & my thyroid levels, under proper care, would have likely come down on their own. Surgery, we were told, wasn't an option, as I had a prior thyroidectomy when I was a child, that at the time likely did save my life. I felt fine, was on PTU (propylthiouracil). I was sent home right after to my baby & my mother, both who had cancer later on & we wonder about the radiation exposure.

If you are facing this procedure, know that many who have it are never the same afterward and if they give you too much, you are glued to the hip with doctors from just about every specialty, for the rest of your life, there is pain that doesn't let up, nerve damage in many, osteopenia, osteoporosis and so on. Please, if you are facing this, ask about other options, get other opinions, talk to those who have had this done 10, 20 & 30 years ago to see where their health went (and their families if they are no longer with us) & look to natural options as well. I would absolutely not ever do it if I knew then what I know now.

Blessings & everyone have a great day!