Hi, If anyone recalls, my last couple of threads, I've benn with severe fatigue and weakness. I thought it was because of my low blood count...HCT/HGB=9.6 and 29.5. So I got a shot of Aranesp, (another form of Procrit), last week. Well today, I go back to check my blood count again, (10.1 and 30.5), so thats alittle better, But my TSH was checked and it is 82.6! Norm is 0.4-4.5. I go back tomorrow to find out about that, I don't know anything about the thyroid, but that seems very high. Any comments? Or advice.
NYGIRL...I know you have had problems with your thyroid, do you know what the level was?
I have a hypothyroid as well and I have not started tx yet. Your numbers are high. I can tell you that your thyroid and petutary (I probably misspelled that one) work together. If one is low the other tries to bring it up. Also what is normal for one person may not be normal for another. The normal range is also big. By the numbers I have 86 or whatever it was is high. It is probably your thyriod stimulating hormone that is high. How long have you been on treatment? Also they will probably give you a perscription for some daily synthroid or something similar. They are small. I don't notice anything when I take mine.
At first my numbers were at 0. They had me go take the radiactive Iodine pills and the next day 24 hours later go in and take the Nucleaur Imaging Scan. Piece of cake I fell asleep I loved it ;)
Well somewhere in between the four weeks it took for them to line up the appointments I went from extremeley HYPER to extremely HYPO. This is a VERY common thing and usually what happens. Hypo is not as dangerous as HYPER especially to your heart (I already have heart issues so it was sort of good news...although I LOVED being hyper cause I ate and ate and ate and lost weight LOL).
Look up Grave's Disease (Hyper) and Hashimoto Disease (Hypo). Neither are really that bad - they don't generally remove your thyroid unless you are hyper I believe...but like with me the doc is treating with Synthroid just in case after tx my thyroid starts to work again. I may have to be on the med forever but it's just one little pill with no sides...so I can handle that.
I have to admit I"m not the most knowledgable about this stuff since I just got it but if you google those diseases you will see most of the sides are DIRECT EXACT copies of the sides we get...so unless you doc is monitoring your TSH like yours is (thank God) you would never know you even had it.
And man your numbers are SERIOUSLY high aren't they?
jim, first congrats on your win. And all the help you have been here. Thought you were gonna hide this from me huh? See your not all the way back yet. You will make it though. Just make sure you get the right metrogel. When my wife called our family doctor to get me some awhile back they thought it was for her and i ended up with Metronidazole vaginal [Drug]
...Metrogel-.. There was some people got a good laugh out of that.
Ina, hi gal. Keep them dancing shoes out and ready. You know you won the battle to. And thanks for your help and being so kind to me.
Now i'll let you gals or i mean gal and i hope jim get back to your facials and creams and whatever.
I did try the Olive Oil and besides smelling like a salad.. actually can't remember why I stopped using it but there was a reason. BTW your skin may not be dry but just appear extremely dry from the seb derm. What happens is that because of immune issues -- the body overracts to outside stimulus and regenerates skin cells faster than it should. This can result not only in flaking but in what appears to be very rough and dry skin. Unfortunatly, no moisturizer will really smooth it out that's why it has to be treated and that's why topical steroids are such a quick (but bad) fix but it stops the growth and inflammation. On the other hand, your skin may just be dry as well. LOL. You might try those drops I recommended in the thread above. They certainly won't irritate your skin, as I believe they're mostly water with something or another in them, which I'm sure is on their web site. A derm sold me this tiny, little bottle for like $50 but like I said it appears to last for many months.
Left out my little spray bottle I bought yesterday. Bought spray bottle full of rose water or something at health food store and flushed rose water down toilet and filled it with bottled water, Fugi since that's what I usually drink. I suppose distilled water is OK and probably adding some cammolie, roobios, or green tea wouldn't hurt either. The idea is to spray your face to cool down during or after exercise, or whenever. You could actually use same spray as a mouth rise as recent studies show that some teas prevent gum disease. Cool water on the face is apparently good. Which reminds me, hot beverages are another trigger as are hot foods -- both temp wise and spice wise. Lastly, I bought some zinc talc powder, brand name Caldescene, that I liberally sprinkle under the arms, chest, feet and private areas. Again, it's an anti-fungal and us on treatment or recently treated are susceptible. Don't know if it works but psychologically it's very powerful. LOL.
Just remember why I stopped using it. Doing research I came across a site that suggested yeast thrives in some oils like Olive Oils. Doctors suggest seb dermatitis is caused by the bodies inabiilty to respond appropriately to a certain form of yeast/fungus...therefore the antifngal meds ... so I put the Olive oil back in the kitchen.
Seems like about every 6 months i break out with rosacea on my forehead and the sides of my nose. After several different things metrogel was the only thing that worked. I'd use it in the morning and before bed and after about a few days it would clear up. Then show back up a few months later. Always in the same place.
I believe carr glass (all glass for that matter) screens out some band of rays but not all. Same with sunscreens, and that's why a physical block that contains zinc oxide or titanium is often better not to mention less irritating to sensitive skin than the chemicals used in your average sunscreen/sunblock.
Ina, if you saved some of the links I posted months ago from sun protection clothing sites, they sell a single left-hand "sleeve" for folks sensitive to the sun who expose their left hand. A glove as well if I remember. I believe their first customer was the fellow Harrison Ford was after in the Fugitive :)
It is both heartening and disheartening to hear it took you so long for your skin to recover first time around. Disheartening because as we both know how much of a collosul PITA this can be on so many levels including limitation of outdoor activities. More so (at least for me) than the Hep C, since it really never impacted my life all that much until I started treating. Heartening because your skin apparently did heal after time which gives me hope. And yes, it's the d*mn interferon again, based on both logic and some studies I've read. That combined with our immuno-suppresive state and we're easy pickings for the fungal and other factors that cause seb dermatitis and rosacera.
Just came back from drug store and bought some plain zinc oxide paste as well as new OTC formulation of Nizoral which is a ketoconazole (anti-fungal) 1% shampoo as opposed to the rx 2% shampoo. I had to stop using the 2% cream (indicated for seb dermatitis) because my skin started to peel. I'm surprised you're not on ketoconazone or something similar as it's usually the first line of defense against seb dermatiis along with topical steroids. Anyway, I plan to try this less potent shampoo on my scalp and face and see what happens. I believe I already mentioned the DHS line of products which many derm's use but the concept is to keep rotating a zinc, tar and syclic acid shampoo. Other OTC products are head and shoudlers, etc.
Current regimen, changing a little every day is:
Cool towel on face soaked in cool roobios tea.
Wash face with Cetaphil gentle cleanser
Wet shave with electric razor using Cetaphil as lather (you can skip this one :) )
Shower with one of the shampoos lathering face and other seb derm problem areas
Another cool towel with roobios
Cool and then cold water
Blue Lizard Baby sun block which in addition to blocking sun and light (yes, light can irritate the skin as well even indoor flurescent) it seems to have a very calming effect. I guess it's either the zinc or titanium, that's why I bought some zinc oxide today.
EVENING: No shaving or Blue lizard and less time with tea soaks.
In addition to the Elidel, I apply the 1% Metrogel.
IN BETWEEN: Try some moisturizes but while the skin looks and feels dry it actually isn't, just the seb derm acting up. One moisturizer that doesn't irritate is skinCeuticals Hydrating Oil B5 gel. Expensive for the little bottle but seems to last forever since you only need a few drops. Not sure how good it is but again doesn't irritate. Also if time another roobios soak and now maybe some of this zinc oxide although it goes on so think, don't have a clue how to get it off. LOL.
Previous skin regimen...
Splash water on my face to wake up, jump in shower with bar of regular soap, shave once every three days or so. That was it. No creams, moisturizes, sunscreens, nada. LOL.
Back to rosacea. If you've done some research, you'll find that some believe there are a number of "triggers". Of course my trigger may not be yours. But some common triggers are sunlight, cold weather, hot weather, alcohol (I've temporarily stopped my 4-5 weekly beers), and some suggest certain foods such as wheat and dairy products, as well as spicy foods. There may also be an allergic component to all this so I'll probably see an allergist soon if things don't clear up.
Back to the topical steriods again. Yes, they clear up the seb derm real well and also take the redness away but they can rebound and spread the rosacera making things worse. Again, some derms absoluty will not prescribe topical steroids for rosacera or even if you don't have it on the face.
Other things prescribed and to look into if things get worse are oral antibiotics (like doxycyline), and oral fungal agents.
Yesterday I bought some aloe Vera gel and maybe I'll mix that up with the tea tree oil which my derm suggested but it does sting a bit. Today I put three or four drops of it in half a cup of water and put it on face with a little zinc oxide.
Here are some unedited links you might want to look at from my reading the last few days. I'm pretty new at this and not at all thrilled I have to research yet another condition. LOL.
Well, good luck, let me kmow how you progress, and I'm curious how your husband cardioverted on his own, although sometimes it just can happen. And, oh yeah, if all else fails there's always laser technology which seems to have some good results at an expected cost. Not sure if the Dead Sea treatment will work for rosacea, although it does work for psoriasis in most. BTW I don't think I have any sun sensitivity at all now -- just that the rosacea and perhaps seb dermatitis is sensitive to the sun.
cdm says: When my wife called our family doctor to get me some awhile back they thought it was for her and i ended up with Metronidazole vaginal [Drug]
LOL. Actually probably not much of a difference. Both are caused by senstive reaction to a yeast* (fungal)organism normally found in the skin. So why were you prescribed Metrogel?
BTW thanks for the nice words but gotta run now and do my evening beauty routine. Never thought it would come to this. Trust me. At least I finally figured out why women spend so much time in the bathroom :)
* Seb derm is caused by a normal yeast called Malassezia.
Current thinking on Seb Derm (not rosacea) is that it's caused by a normal fungus that some of us (especially those immuno suppresive) can't handle. That's why ketoconazole lotions and the like are often prescribed as a first line defense. You can try the shampoos on the face as recc by my derm but I did find them irritating. Taht's why I bough today the Nizoral 1% which is half the strength of the rx formulation. But I would def speak to your doctor what he's giving you regarding the fungal aspect of seb derm. In my case, now that I've stopped the ketoconazone, it's the Elidel (anti-fungal properties), zinc shampoos and Caldesene powder as described in previous post. If you don't have time to research, maybe just print out the links I posted above and read them at your leisure. No easy solutions and my hope is that when my immune system gets stronger my body will take over and clear things up.
Told to use the shampoo daily by derm and all research confirms. I'd love to grow a beard -- had one for years -- but after a couple of weeks it flares the seb derm and/or psoriasis. So now I reluctantly shave every day.
Haven't looked into the Ph factor yet but I know they monkey around with that with regular acne. I'm sure there is also a stress factor involved so anything that relieves stress probably would be good including meditation, yoga, etc.
Regarding your thought on sports in your last post -- my pre-tx strength as almost completely retuned as measured by bench press and aerobic capacity. Took 3 months at the gym, 3-4 times a week with weights plus aerobics another 3-4 times a week. Gaining back my weight was a real big plus. Could not believe how weak I was at 148 pounds. Now 170 and feeling strong. I'm 59, so absolutely no reason your pre-tx fitness level cannot come back if you start working out and supplying your body with enough calories to build the muscle. Hopefully, that (working out) will help the depression as well, which yes, also caused by interferon. In fact, a recent paper (posted here I believe) talked about interferon withdrawal induced depression in one patient. Inteferon is really vicious stuff and not at all natural in the amounts we take it.
Just looked into Lotrimin a little more. Apparently it's a less potent anti-fungal than I was prescribed for the SD. Since it's OTC, I just might try it on a few spots and hopefully it won't irritate me as much as the stronger anti-fungals. Still, if you can tolerate the rx stuff, ask your doctor. Supposedly, Lotrimin is equivilant to 1% Hydrocortisone while the rx anti-fungals are equivilent to stronger topicals without the downside of steroids.
Not 100% sure, but I think the Lotrimin is an anti-fungal similar to the ones I was prescribed for seb derm. Supposedly these anti-fungals are as effective as 1 per cent cortisone without the negative side effects. As I mentioned it seems to be a first line of defense against seb derm, but for me it seemed to irritate and peel my face so I had to stop using it. Let me know how it works out for you and what he doctor says. My skin does itch in spots I'm guessing from the seb derm (hard to tell since I have both) but I now avoid steroids because of the rosacea. I believe Forsee's cream has olive oil in it which I'm avoiding because I read somewhere that olive oil can breed yeast but don't know how accurate that is.
BTW I also had fungal infections near private parts (jock itch) during tx and was initally prescribed an anti-fungal with a topical steroid and later just used an anti-fungal. Never had the peeling problem with the anti-fungal I had on my face. Can't figure out why I can't tolerate it. I guess everyone is different. If that doesn't work, there's always Elidel, which I'm using but it does have black box warnings on it which my doctor says to ignore. It also makes you feel like you have a cold or mild flu some of the time. Try cool soaks and then straight otc zinc oxide on the spots that itch and see what happens. Zinc oxide seems to calm my skin down and according to some forms a protective barrier.
I think Betadine contains iodine. Not sure if I'd use it on my face without researching it out or speaking to your doc. Remember down there is not up here and your forehead is not your face. Why not just ask your derm for an rx anti-fungal cream usually prescribed for seb derm?
I'm back to the anti-fungal cream once a day, instead of twice, (instead of Elidel because I hate the sides) which I'm diluting with 1-1 with zinc oxide so it will be less irritating and adding a touch of vaseline at night to enhance its moisturizing properties. I put this on after the Metrogel. I imagine that would end up being the same strength as Lotrimin.
Not sure if any of these things work very fast with so many potential triggers involved including weaning off the treatment drugs. The big trigger for me does appear to be sun exposure but maybe heavy exercise,alcolhol, and diet may also be factors. At this point I'm hoping it will just go away by itself in time as the rest of my skin problems did near the end of treatment.I think you mentioned you don't like sunscreens and/or zinc, but I have found that the Blue Lizard BABY sunscreen (zinc oxide and titanium dioxide) seems to have a very calming effect on my face, irrespective of its sun blocking properties. I'm also going to try that zinc0 stuff I mentioned earlier as well.
I believe the theory behind the zinc lotions is that with seb derm or rosacea our protective skin barrier gets compromised and the zinc therefore somewhat acts as a substitute barrier, retaining moisture and protecting the skin from the elements. Of course I read this on a site that sells zinc products LOL but it does seem to make sense.
Disclaimer LOL: Anyway, this whole thing is new to me -- and the kind of studies/research like with Hep C -- do not seem to exist -- so like I tell the rest of the folks here -- double-check everything I'm telling you with other sources including your doctor, as some of the experiments I'm doing on my own skin may not work for you , or for me. In fact, if I don't get better soon, I may just stop using everything on my face except water, a zinc oxide based sunscreen for outdoors, and a mild cleanser like cetaphil every few days. If that doesn't work, I may then start adding beginning with Metrogel. Still think time will work the best.
I know what you mean about the zinc oxide but you got to wash your face at least once a day anyway, at least with a mild cleanser. Some of the formulations (micronized zinc) are not as thick and will come off. Actually, I sometimes use mineral oil to get it off but then rinse imed after. Also, just ordered a ten buck sample pack from Linda Sy (link previously). Her oatmeal cleanser appears to be VERY gentle. Going back to the zinc, besides the sun protection, it seems to calm down the skin as well as protect it for reasons mentioned earlier. You might try that Blue Lizard BABY for starters on one of your itching spots and see what happens. Curious -- not that I'm gonna use it -- but which steroid do you use on your face occasionally?
My current, simplified regimen consists of:
Shower in the morning with OTC Nizoral anti-fungal shampoo (alternating with T-Gel, etc) and lathering up scalp, face, chest, etc, wherever I have the seb derm. Let sit for five-ten minutes.
Wash face with Cetaphil and rinse with progressively cooler water until very cold to cut down inflammation. Mix a little anti-fungal cream with the Blue Lizard BABY sunscreen and apply. That's that.
Night -- Cetaphil again and maybe some mineral oil to get off the Blue Lizard. Metrogel, then mix anti-fungal half and half with straight Zinc Oxide for a totally albino effect :)
Not sure if Dead Sea would be good for the rosacea or seb derm. Works for psoriasis though but that is pretty much gone. As to itching, I think the anti-fungals and zinc oxide have calmed that down to a large degree. Of course topical steroids will also but haven't used one for a couple weeks now. Like yourself, I'm hoping that time will be the big healer in this case as my body adjusts to life without the treatment drugs and as my immune system gets stronger.
Hot off the press -- I did try a little Linda Sy ZincO and it stug for about a minute and then OK. It absorbs pretty well (no doubt why it stung) and the tint covers a lot of the red. The Blue Lizard doesn't sting at all but goes on thicker. Look at both of them as an extra layer of skin that will take absorb the punishment of the elements (sun, wind, cold, heat, pollution) so your skin underneath can heal.
Cool (not cold) soaks seem to help. So does having the A/C gently blow on your face, or spritzing your face with cool water. What seems to hurt is heat, hot weather, sun of course, hot drinks, caffinated beverages, alcohol, spicy foods and some speculate certain trigger foods.
Solution? Move to a monestary in Iceland. Don't you just love interferon. I hate it more every day. But at least we're SVR, or err, almost :)
BTW I used Lotrimin tonight with the Metrogel instead of my stronger anti-fungal cream. It absorbs better and hopefully is milder. I also tried the Linda Sy Oatmeal Cleanser sample and it is gentle as advertised. The ZincO cream seems about the same as the Blue Lizard BABY -- sometimes stings for a second -- but it absorbs better and is easier to wash off which if I remember correctly was one of your concerns. The reason I believe is because the zinc is micronized, therefore finer. You can also find other micronized zinc products in larger drug stores (sun blocks) if you look around. Just make sure they hve at least 6 per cent zinc as some have misleading labels.
Don't know about Derma-smooth, but Fluocinonide (brand name Lidex) is a class 2 steroid and like a zillion times stronger than OTC Hydrocortisone 1%. I'm quite surprised any derm would prescribe that for your face. Maybe you can get away with it like once or twice a week every month or so, but still seems strong to me. Very occasionally I'll use something a step down called Elocon, but I even stopped that lately.
Speaking of "mites" -- and not to make your paranoid because half the population has them -- but there's lots of speculation in the derm community that rosacea is caused by a sensitivity to demodex facial mites, and all the pillow washing in the world won't get rid of those critters unless maybe you climb into the washer with them. LOL. Google "demodex" and "rosacea" if you want to learn more.
This web site has some illustrations. My theory is that the interferon made us overreact to the mites in the same way it does with psoriasis. http://members.ozemail.com.au/~rosacea/rosacea-inflammation.htm
PS: Washing your pillows, bedding is a good idea anyway and many are allergic to dust mites. In fact, it's probably a good idea to get new pillows and bedding every year or two, and not let your matteress and box spring get too old either.
Forgot to ask, what's with your glucose? I really haven't focused on them much. Is 95 good? When I suspected at one point I had diabetes (maybe the amaylays, can't remember why), my doctors suggested I didn't because of my glucose levels.
Saw my 3rd or is it 4th derm since stopping tx 3 months ago.
Asks me what I've been prescribed and say it's all wrong.
Stop the antigungal creams, stop the antifungal shampoos, stop the metrogel, stop soap, stop water, stop , stop , stop.
So he prescribes a ten day course, of what else, topical steroids. Somehting called Cutivate Lotion 2X day. Says it's OK for ten days or so and then he'll maintain me on something else. Seems like I've heard this song and dance before.
Anway, new regimen is a lot simpler. Just Cetaphil cleanser, put on, wipe off, no water (he says water is not my friend now) and Cutivate 2X day. He OK'd the Blue Lizard BABY sun block but that's it.
As to the anti-fungal creams and metrogel, says they were prescribed wrong -- can't remember how he said antifungals were used but said Metrogel is used only on nose and sides of nose, not on whole face like my previous derm instructed me. Do I sound frustrated? Lost? Angry? Confused? I probably am all three or is it 4.
You know how I suggest folks swith docs if they can't communicate with them? In the world of dermatology that would mean switching doctors after every visit because they really don't appreciate your particpation or questions about treatment. I'm starting to get the impression that they were the smart, nerdy ones in high school who never went out for sports, never dated, and were basically ignored by everyone else. Now, I guess it's time for their revenge.
I wish I could offer some advice but at this point I haven't a clue. But from the little I do know, I guess his approach is to calm everything down with a couple of weeks of mid-strength topical steroids and then switch me to an immunosuppresant like Elidel or Protopic, both of which give me sinus congestion. When I pressed him on the rosecea issue, he did say he could put me on oral tetracycline but I decided to decline until the next visit since I really don't want any more medicine in me right now.
Just to be clear -- you said you had a lot of problems after your last treatment -- seb dermatitis and rosacea -- but it eventually went away? How long did it take? Thanks.
Yes, a couple of derms (plus internet research)told me to use the various seb derm shampoos on my face such as t-gel, head and shoulders, dhs zinc, t-sal (contains salyic acid), etc. However, they often sing so don't keep them on all that long.
I used Lidex a couple of times but went back to my rx anti-fungal. No particular reason and I'm not sure either is helping all that much but we'll see.
Talk about smelling bad and stinging, I've been using some t-tree oil -- sometimes diluted or mixed with moisturizer, or Aloe Vera, etc, in some spots straight up. Again, not sure if any help.
You should stop the Lidex on face right away and ask your derm for something else for the itch. Actually, the tea tree oil helps the itch a little with the downside of perhaps some burning and more irritation. Or, maybe it's the anti-fungals, really don't know.
Had both a thallium stress test and chest x-ray to investigate LQP (actually it was on right side a little as well). Everything normal and the pain itself is very intermittent now. I'm very sure, as are my doctors, it's not the heart. Maybe digestive, minor resp infection, gerd or just post-treatment adjustments.
I've been posting my lipids both during and post tx but very hard to keep up with post, especially with MH's format and so many new posts these days.
My lipids normalized by I think week 2 of tx and ended up mostly in the 20's (sometimes higher or lower) with AST usually a few points higher than ALT. GGT was also low 20's. Post treatment my ALT rose into the 30's for a while with a lower AST, making AST lower than ALT. Amalayse is sometimes elevated a few points but lipase is normal when checked so docs are not concerned and think it has more to do with salivary glands being dry from treatment as opposed to pancreatic involvement.
Week 12 labs: ALT 20, AST 22, GGT 36. GGT has been progressively coming down since it rose but still higher than during treatment and pre-treatment. Glucose is 95. Hgb 13.7 (14.8 pre treatment and was 14.8 a month ago). Platelets 177. WBC 3.1 (low) -- was normal a month ago. Doctor is happy with all values but then again he never seems to worry.
Don't check in every day now but would like to hear follow up on your husband's AF, so I'll check back down here when I check in.
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