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sandpiper

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Posts posted by sandpiper


  1. Hi sandpiper! I am from the STL area also! I hear you about the bloating and weight gain! I would actually have to change my pants at the end of the day becasue I would be so bloated! Once I eliminated gluten that problem disappeared. Now when I get glutenated and bloated it takes a few days for my belly to go down. I drink lots and lots of water and I try to work up a good sweat by walking around my hilly subdivision. As far as the surgery, were all the meds confirmed gluten free before you took them? Perhaps the meds you were given had gluten.

    Hi Amy,

    Thanks for your experience with your symptoms of being glutened, and you are so right about the added assistance with drinking the water and helping it all flush out faster. I really did feel as if I was loaded down with drugs, it not only effected my lower tract but the effect it had on my whole system was pretty scary for a week plus.

    Yes, I did actually call the doctors office and inquire about the drugs, and after speaking to one of the nurses, she was not able to give me a 100% accurate affirmation of the drugs not containing any gluten. At the time though, with the tooth causing me such pain and the infection going through my body, I was ready for it to just come out, taking the chance of the meds being unsafe, ( and I did make the call after the surgery), again I just wanted it taken care of.

    I agree with some of the others here helping me with their suggestions and input of the amoxicllian maybe being the cause and effect, and trying to replenish the gut being stripped of my good bacteria. I did follow the amoxicillian with some plain good quality yogurt, and things are starting to settle down.

    I want to thank all of you here with your help, and great thoughts of how to treat your body, when you have to resort to not the natural approach of helping your body heal, all sound and well put words of help. Thanks again. Hope that you are doing well Amy, and it is good to know that you are so "close" by.

    Best to all,

    Susie


  2. Hi to all,

    I have to apologize if this is not the correct area to place this question, and I did try to post it earlier this week, but have not had any responses.

    I had some dental work done a couple of weeks ago, and the surgery required that I had a general to pull this abcessed tooth, which I before hand was using the amoxicllian medicine to help with the infection. At the time of the surgery, the doctor also gave me a pain injection along with some other medicines which I am not sure of the type that they used.

    My question is when having a surgery of this type along with the amoxicllian that I was on, would there have been a chance that I was glutened? I did not feel too bad the day after the surgery, but the next few days I was miserable, very distended, I looked like I and felt like I was seven months pregnant, very tired, and depressed, this lasted for the most part three or so days.

    I am starting to feel better into the second week of post-surgery, but I feel like I and my clothes are telling me that I have gained about 4/5 pounds. If this is from being glutened, how long would it take to recover and to have the pounds start to come off?

    Please let me know what you think about having dental surgery and the safety of the kinds of meds that are used when going for dental work.

    Thanks for your help and input, as always it is much appreciated,

    Susie


  3. Hi Susie,

    I screwed up my post a few days ago. Sorry. Anyway, my daughter and I both have the DQA1 *05 allele (half of DQ2) and are both diagnosed Celiacs. We used Kimball Genetics. They report both the beta and alpha portions of the genes (since each gene has an alpha portion and a beta portion). From what I understand, the most common Celiac genetic markers are the DQ2 molecule or DQ8. A very small percentage (like us) carry 1/2 of the DQ2 molecule on the ALPHA chain ONLY or DQA1 *05. Individuals with only half of the DQ2 heterodimer (a.k.a. us) have a much lower risk for Celiac than those with a full DQ2 heterodimer. Kimball states:

    "Celiac disease is strongly associated with the human leukocyte antigen (HLA) molecule DQ2 (encoded by alleles DQA1 *0501 or *0505 -PLUS- DQB1 *0201 or *0202) and DQ8 (encoded in part by DQB1 *0302). Individuals with the DQA1 sequence variant (*0501 or *0505) -OR- the DQB1 sequence variant (*0201 or *0202) but NOT both (i.e. half the DQ2 heterodimer) have a much lower risk for Celiac than those with have DQ2 (i.e. the full heterodimer)." It's a much lower risk, but it is a risk none the less. That's why your lab said that the "results do NOT exclude a diagnosis of Celiac."

    I actually first did the genetic testing with Enterolab. They only report the beta portions of Celiac genes since that is FAR more common. But, when things didn't add up, I went to Kimball. And, surprise, they supported our diagnosis.

    Hope this helps a little bit. I did a lot of reading to try and understand this gene thing. So confusing, huh?

    Best,

    Sonya

    Hi Sonya,

    Well I can relate to your post, as I was just finishing my posts ( to all ) this morning my computer crashed. Everything is okay now, but well you know I just can't remember word for word what I wrote, sorry.

    I will try again..... first thank you so much for your post and you and your daughters experience with the genetic part of testing and learning. It is great to hear that you did not take the Enterolab's report and end there and have more unanswered questions that would have had you wondering. I did want to ask you how they finally dx you and your daughter?

    Pretty interesting with the DQ2 and us having the 1/2 version and not excluding us with the possible chances of having or getting the disease. I have often thought that my body was trying to tell me something was a miss, and I quess when you start with the immune system and breaking it down with certain foods it begins a downward spiral of other autoimmune diseases that might not have taken ahold of your body and it's effect down to the celluar level. We can I quess only try to help others (hopefully our family to start ) with what we have learned on our own personal journeys.

    Do you and you daughter have any other autoimmune diseases? Or did you have anything that you think would have been a certain trigger for you? Sorry, my mind is going on here.

    Glad to hear that you and your daughter and others here are starting to heal.

    Best to you,

    Susie


  4. If you want to study more about the celiac genes, (they are only responsible for half of the celiac thing, there is also the myo9b thing, and tnf alpha, a cytokine thing, and some more stuff) go to wikipedia and serach for the DQ page.

    Now there are 9 DQ types, but DQ1 includes DQ5 and DQ6, and DQ3 includes DQ7,8and 9.

    There are officcially diagnosed DQ6 and 7 celiacs, and DQ9 celiacs according to Pubmed.

    Plus all the half DQ2 gene people with celiac.

    Plus all the DQ1 gluten ataxia patients, but they often just have neurological issues, and they found gluten antibodies in the neurons, and Ttg6 antibodies.

    Also, check out teh wiki pages on DR, and on DQ2, and the other DQ types. There is as good as nothing on wiki about the gluten and neuro connection. See also www.ataxiaalternatives.com .

    Forums for those with neuro issues from gluten:

    http://neurotalk.psychcentral.com/forumdisplay.php?f=13

    http://brain.hastypastry.net/forums/forumdisplay.php?f=152

    There are several DQ1 there.

    Nora,

    Thanks so much for the information and the interesting reading, this is heavy stuff, but it did help me to get a better picture.

    Best,

    Susie


  5. Honestly, genetics is not my strength. I know that someone here is DQ3 and dx'd Celiac. And many here are DQ1 (as Nora pointed out). But, that's about as specific as I know. I've read many articles that indicate at least nine genes total that are associated with Celiac Disease, but my brain has a hard time retaining that info. Start talking about alpha and beta chains and I get the deer in the headlights look. :blink:

    I did some searches on google: celiac genes; this will point you to some articles about the recent associations of the other seven.

    At this point, any Celiac testing will be a waste for you, since you've been gluten-free for 4 years. Was the doc that ran this a GI or a GP? If it was your GP, maybe you could be referred to a GI who would at least be able to keep up with you.

    Sorry that this has taken me longer to respond back than I would have liked. Been under the weather.

    I love your "deer in the headlights look" remark, I really can "get" that one, as I often have the duh look with all of this, and trying to keep it all straight and in my head is just about too much for me, but I do love the learning atleast trying to.

    Thanks for your help and I am looking into this with all of your help here. My doctor is an internist, and I have not seen a specialist, you are right she was in less informed than myself, as she ran the wrong tests first.

    Take care and thanks again,

    Susie


  6. We know from the forums that DQ1 can b e extremely sensitive to glutetn, and epecially have neurological issues from gluten, just like you.

    There are even a couple of forums where those patients are.

    Now they even have found the antibody for the neuro-gluten conection, it is the ttg6 antibody.

    DH patients have the ttg3 antibody, and the typical gut issue celiacs have the tg2 antibodies.

    The gastro world only concentrates on the minor group of DDQ2 and 8 gstro celiacs.....

    What other gene do you have? Or do you have double DQ5?

    In case of double DQ5 (which is a subgroup of DQ1) the risk is even greater.

    If you search the web and pubmed for Hadjivassiliou, you find some answers, and that about 20% of his gluen ataxia patients have DQ1.

    nora

    Hi Nora,

    Thanks for your help, regarding the remaining test and results, it showed as follows : DQ2 Homozygous 31X relative risk, extremely high DQ2/other high risk gene 16X very high risk DQ2/DQ8 14X very high risk, DQ8 Homozygous 10X high risk, DQ2 heterozygous 10X high risk, DQ8 heterozygous 2X moderate risk, DQ2/other low risk gene <1X low risk, DQ2-, DQ8- <0.1X extremely low risk.

    Hope that this makes more sense to you than it did for me. Again these are the only tests that they ran. Who would be able to run a more detailed panel, I had a very difficult time getting this done by the request of myself to my doctor, who does not have any backgroung of studies in the disease, but atleast to be covered by my insurance company she complied.

    Best,

    Susie


  7. Prometheus did my testing as well. And I am in the exact opposite place as you... 31X risk.

    Either way, it's true, it doesn't exclude it. There are other genes recognized with Celiac. There are are few people on here who don't possess either of the two, and yet are diagnosed Celiacs.

    OR... you could have non-Celiac gluten intolerance. In which case, you are sensitive to gluten, but without all the yucky autoimmune side effects. But, the treatment is the same. And I am a firm believer that if something makes you feel sick, don't eat it. It's probably doing something bad to you somewhere.

    Thanks for your return. I am wondering what are the other genes you mentioned that are recognized with the disease? I thought that I had read that there are around seven different genes, is this true, and how would you find out more information about them?

    Yes, you are right about the autoimmune issues that take place with those type of diseases, and how it plays out with your daily living. I have graves disease and fibro and endometriosis and they have impacted my life and it's quailty.

    Best,

    Susie


  8. Hi to all,

    Please help me out here. Finally got the results back for the genetic from prometheus, which was the celiac plus panel.

    It reads that it did not show the main two genes the DQ2 and DQ8 to be detected and only in the <0.1X risk to be extremely low. It did result back with the HLA DQA1 *05 Alleles detected.

    It also reads with a breakdown of the over all risks for patient carrying the DQ genotype, which if you let me know I will post these as well.

    The labs interpretation said: Results do not exclude a diagnosis of celiac disease.

    I was asking the doctor to run these tests for my family and their possible chances of having the disease, if I showed the markers. I have been gluten free for four years and know how I feel when I get any gluten in by mistake, and I have to agree there is no turning back once you have felt the difference ( like those terrible migranes ).

    Wait to hear back from you all and your help is ALWAYS appreciated!

    Best,

    Susie


  9. Ok, I'm going to go off on a tangent here.

    Antibiotics are NOT bad in this situation. My now 3 year old DD has/had UTI issues. UTI's are very, very, VERY dangerous in young children. VERY. They can cause permanant kidney damage. Not to scare you but the Dr.'s really do know best in this case. Emma's urologist said any of those natural UTI prevention things are like a band-aid for a tumor, LOL! Seriously, what works for adults in prevention is NOT the same as in children, particularly in kids under 5. Under 5 is when most permanant kidney damage can occur. Seriously even one UTI that gets to the kidneys can cause scarring. I really, really urge you not to discourage the antibiotics! I would also ask what tests she has, did she have the reflux (as I mentioned above), is her bladder normal (ie, does she empty it correctly on her VCUG, is it normal size). Almost always in kids that age getting UTI's there is some sort of medical abnormality causing it.

    Again, I don't mean to scare you I just hate to hear people start going on about the evils of antibiotics in kids, when in fact that is probably what has saved my DD's kidneys from someday needing a transplant. We have NEVER had an issue with her being immune to antibiotics or having some horrid infection either.

    Linda

    Hi Linda,

    I don't feel that you were off-base with this post and to hear that your little girl is doing well now is wonderful. My own personal experience which puts my view on traditional medicine and the some times over-use of the many pharmaceutical approaches that are used so readily is just that the "over-use" of them and the effects short or long term that can occur. With myself and the way I react to them has landed me in the ER and at home going through nights of wondering what was going to happen ( those would be of course the worse experiences ), and the more common reactions that one can have, has put me on the fence with the now discussion of antibiotics. But please don't read this wrong, because I do believe that our bodies can't always use the most natural approaches and must be helped with a stronger choice of a remedy.

    Thank you again for your help and your daughters experience, I am very happy to know that she is better. Good health to you and your family.

    Susie


  10. Was she checked for VUR? (Kidney reflux?) Did she have a VCUG? (The test where the catherize her and put the dye up to see if it refluxes in her kidneys?)

    Hope that I can respond with enough information with the questions you have asked as this is my sisters grandchild who lives states away from our state and they don't have the day to day phone contact as some might.

    With as little information that she was given a couple of weeks ago she did mention that the grandchild had a catherized test done, I am sorry that I can't say if and what this particluar test (s) were, but this does sound as if this was what you were asking about as they stated that her kidneys were functional. Does this sound right? This would be more than a second-hand communication so some of this again may not be that accurate. I am sure though that they will talk again soon to get a up-date on her

    Thank you for asking these questions as they might have some value in helping Emily out.

    Best to your health,

    Susie


  11. The good thing about D-Mannose is that you can put it in juice, water...ANY drink and it can be taken daily. It won't cost much to try it and the results should be fairly obvious. If for some reason it doesn't work, she can always fall back on the prescription for the antibiotics. But I would definitely give the D-Mannose a shot as there will be no negative effects as opposed to the effects of long-term antibiotic use.

    http://www.ncbi.nlm.nih.gov/pubmed/1844621...Pubmed_RVDocSum

    http://www.smart-publications.com/urinary_...t/d-mannose.php

    What a great site and read on the benefits of this natural product! Thanks so much Vicky, I will send over the article-site to her mom, this should get her attention right away. I appreciate your help and concern ( big hug )!

    Best to you,

    Susie


  12. Make sure you take probiotics during and after you have taken antibiotics!!

    Thanks Rick,

    Her mom has been following this with the needed flora care, and giving her daily yogurt, just hope that this is not a problem with dairy for her. We try and give our grandson the non-dairy powder form, this is a learning journey all the time for us all. Thanks for the good suggestion!

    Best to your health,

    Susie


  13. Great minds must think alike! :P:P:P

    Thanks Vicky, happy to know that you are both in unison with these products and the help that it can give!

    I am just wondering if maybe her pH is out of balance, we suggested this to her mom and she is going to get the test papers at the store and give it a try. It breaks your heart when you hear of the little ones having to go through these conditions at such a young age, and to have them go through the tests, it is difficult.

    Take care,

    Susie


  14. And no me and ShayesMom are not in cahoots.....(no relation). :P

    You can get the D-Mannose with cranberry extract in pill form. Or just pure D-Mannose in pill or powder. The powder might be best for a child as it is sweet and can be mixed with fruit or something. They wont mind.

    Okay! You all are so cute! Thank you for the great ideas and the great minds thinking alike! Hope that Emily's mom will try this out and look into the more natural approachs and not resort to the antibiotics.

    Take care,

    Susie


  15. Hi to everyone,

    Please let me know what orange juices are safe and which ones might cause some problems if the companies cannot completely give a 100% answer and respond with the 200 codex concerns for people who are more sensitive than others.

    Thanks to you all for the incoming suggestions to come, as I am looking forward to a "good, safe " glass.

    Best of health to you all,

    Susie


  16. Susie!! D-Mannose is a miracle for this. At the first sign I start taking it and I never get one. And I dont get that little sign hardly ever anymore. It is a safe natural sugar. Google it. And I hope it helps.

    A Big hug and thank-you to you both for the quick suggestions and personal experiences! I will look into this ( D-Mannose ) and cranberry juice and also pass the information to my sis and her family. My thoughts are like many here I am sure, to apply as much of the natural remedies as not to over-tox our bodies and let ourselves ( our bodies ) heal and balance in their own ways which given half a chance will do. Antibiotics are pretty wicked and for a little one of such a young age, you just want to try and help with some other choices.

    Thanks again, and the best of health,

    Susie


  17. Hi to all,

    If anyone has some experiences with their little ones or themselves when they were younger and didn't know yet that they were a celiac/gluten intolerant with on-going urinary infections and no tests showing any kidney disease, would you please let me know.

    My sister has a grandchild by marriage not their own, (second marriage, her husband) who is having this problem and the doctors don't know why. Emily the child is eating gluten foods and also dairy (yogurt). The doctors have now placed her on a daily regiment of antibiotics to try and take care of it, which if I am not explaining this incorrectly has been done in the past, and it still is happening.

    Please let me know if this could be a problem with gluten or dairy?

    Thanks so much to you all, don't know what we would do without each other here and the help with your own stories and experiences.

    Best,

    Susie


  18. Just another thought. If you are using Jam or other products that may have been used prior to your going gluten free, you may have some cross contamination issues in your jars/containers.

    Also, there are some foods I eat that are stated "gluten free" like the ginger snaps from Trader Joe's or Lays potato chips, and I have to say, sometimes they bother me, and sometimes they don't. I just figure that there are some cc issues when these products are made on the same lines as wheat products. Just a guess... so I don't trust them, especially in the beginning.

    When beginning to go gluten free it is up and down. I think my stomach was so much more sensitive the first 6 months or so to everything I ate. I cut out soy, dairy, potatoes, and caffeine. On one hand it is so great to feel so good for a change, but getting sick seems to wipe out any sense of feeling good. Hang in there, be diligent, and it will get better over time!

    Hi Cindy,

    Read your post, and I have also noticed with the Lays potato chips ( I was eating the classic original ) ones, and getting some negative reactions ( and they tasted sooo good )! Just wondering if you or anyone here has this more often than not? Another question to you and everyone, can you suggest a orange juice that has no cc, as I was trying out the Minute-Maid no pulp version and really think that I was glutened ( called the company and they stated that this particular one was not confirmed a 100% product, with a codex count of 200 ). Does anyone here have problems with products that have this type of uncertain guarantee with that kind of count? I would really like to have a "good" glass of orange juice. Thanks for your help Cindy and all. Sorry, but I would also like to ask about the cereal by Health Valley, Rice Crunch-Ems, has anyone had a problem with this? Thanks again!!

    Best,

    Susie


  19. Go to the Gluten Free Foods, Products.....forum and look for the thread on Everyday Minerals. I haven't tried it yet but I put my order in last week. You can get a free sample pack and from what I've read, you can do that more than once. I have been having more trouble than usual with acne lately, and I believe it is being caused by sugar.....including fruit and rice. It is difficult to pinpoint it to a food intolerance because it takes a few days for new breakouts to occur, so at this point I can't be absolutely certain. Time will tell, I guess.

    Hi Lisa,

    Thank you so much for this great sounding product(s). I have been trying to reach them, by phone, but have not had any success. Is this the best way to reach them? Did you order on line? I was hoping to actually speak to someone, to get more of an idea of what they are all about. I agree with your thoughts about the food relationship, this could be something to think about more, but I don't do alot of sugar, and try to eat whole foods every day, but that doesn't mean I don't have intolerances that could trigger these breakouts. I do though seem to notice the sun as a big factor and my reations with the time of exposure and breakouts. Ugh! and Ouch!

    Thanks again for the Everyday Minerals,

    Best to you,

    Susie


  20. Hi Susie,

    I'm post-menopausal, too. Since my hysterectomy, my skin has finally stopped breaking out as it used to do due to hormonal fluctuations. I get an occasional spot now only when I eat Lay's Stax chips. (not often--it's one of the only processed foods I eat)

    I use the Everyday Minerals and love it. It doesn't contain bismuth--which is a common ingredient in mineral makeups and can cause breakouts and itchy skin.

    It's great because you can get sample packs (not limited to one) to help you choose the right shades for you.

    I use Dakota Free bar soap to wash my face (and in the shower)--it works as well or better than anything else I've tried.

    https://dakotafree.com/product.asp?Category...p;Product_Id=15

    Hi Patti,

    Thanks for your thoughts and support. You know it is pretty hard to take some days with these breakouts and our age factor, thought that was well behind me.

    I do thank you all for the suggestions with the Everyday Minerals, I want to try this product, but I have not been able to get a hold of anyone by phone the last two days I have tried, and I have left a message to please call me, with no avail. I will try tomorrow again, did you reach them and order by phone? I will also look into the Dakota Free bar soap, thanks.

    Best to you Patti,

    Susie


  21. Have you had your thyroid checked recently? Acne can be a sign of hypo.

    Hi,

    Yes, I have recently had it checked ( I have Graves disease and was treated with the RAI, a few years ago ), and nothing has been the same since then, as I am unable to tolerate the hormone replacement very well, which is maybe some of my problem with the breakouts and reactions. Do you have a thyroid problem as well?

    Thank you for your input, which is quite right with the thought with the thyroid and problems with the skin. Wish the doctors would have put that together with my dx and how late it was in coming.

    Best to you,

    Susie


  22. I believe there is some relationship between candida yeast and ovarian cysts...as well as endometriosis.

    You can google it for more info. From what I read about it there seemed to be alot of evidence that yeast was a factor for most women having these conditions. Antifungal treatments seemed to improve their conditions.

    Yeast typically only becomes a problem when immune defenses are down or when the body is under stress.....as it would be in a person who has Celiac (prior to the diet).

    I'm not aware of any direct link bewteen Celiac and PCOS.

    Hi Rachel,

    Just read this post and the concerns. Actually endometriosis is an autoimmune disease itself, and I believe that ovarian cysts can greatly be effected by the hormones with a strong emphasis on the over-production of the thyroid in particular. Just some thoughts, hope this helps.

    Susie


  23. Hi to All,

    Please let me know where to turn to concerning finding a product that is gluten free for cover-up facial blemishes/breakouts, that would be hypoallergenic and sensitive-free, as I have very sensitive skin, and need to take extra precautions in whatever I try to use.

    This has been an on-going problem of late and it is not getting any better. I am post-menopause and I am not sure this is hormonal or maybe deficiencies in my body from the vitamin/minerals aspect.

    Does anyone here have this problem (that might be connected to some deficiencies)? I have tried some different brands of vitamins, but I even have a intolerances of these on a daily basis. So any kind of help from you all would be great with something to atleast cover these areas up as this is an embrassing condition and my self-esteem is not the best anyway. I have tried the oral meds to help clear this up but again I cannot take these as well.

    Thanks to all of you and your inputs forth-coming,

    Susie


  24. I wasnt aware at the time that epinephrine could be a problem for me. I had always been very healthy and had never had a negative reaction to any shots, food, chemicals, etc. The Graves Disease was my first sign of any health problems and I actually didnt think much of it as my symptoms werent severe. I would only experience symptoms during times of high stress....I would then take PTU for a few days and I'd be fine for months.

    It wasnt until after my dental work that everything got out of control.....not only with the Graves....but with everything else as well. I completely lost my health.

    I do know *now* that I need to avoid epinephrine and I'm aware that I can ask for shots without it....but at the time I had no reason to think there was any risk. The dentist was aware that I had an overactive thyroid....the info. was on my chart as it was the *only* health problem I had at the time. If he's administering these shots shouldnt he know that there are risks in patients with Graves Disease?? :unsure:

    I know that I wont be having a repeat of this incident. For one thing I'm more informed....but also I'm now hypersentive/reactive to *most* things....so until my situation improves no dentist will be injecting me with anything. ;)

    I also will see only biological (mercury-free) dentists from here on out. The two that I've seen have alot of experience with patients who are toxic and very chemically sensitive. The dentist who gave me these shots in the first place was oblivious to everything....including the fact that there are health risks with unsafe removals of mercury fillings. Also, clueless that mixing different metals in the same mouth is dangerous....and obviously oblivious about injecting epinephrine (excessively) into a patient who has Graves Disease.

    So I learned my lesson the hard way....but I learned it well. I dont go into anything blindly anymore....I will not just assume that any doctor or dentist is looking out for my best interest. I would not EVER see another dentist or doctor who isnt acknowledging these risks and who isnt doing everything in their power to make the safety of the patient their main priority.

    Actually I never had any skin symptoms or breakouts prior to my diagnosis. However, immediately after RAI I did experience breakouts......all kinds of little blistery things on my back and some on my face. Not typical pimples...but tiny clear blisters. I assumed it was from my hormones going crazy because I went EXTREMELY hyper following RAI.

    I was prepared for the possibility of going hyper before things settled down but it kept going more and more in the direction of hyper (to the point that it was becoming dangerous) and I had to temporarily go back on PTU to try to calm things down. It worked and from there I went all the way in the oppsosite direction with a TSH of 26.5....and then I started with the thyroid replacement.

    I'm not sure if the blisters were a result of the hormones swinging from one direction to the next....or from the radioactive iodine itself (my body trying to detox from it?)....or from something else entirely. I had all of these other problems that came on after my dental work but during that first year I had thought that my symtpoms were caused by the Graves only. The Graves probably worsened the severity of my symtpoms but they actually never went away even after I was stabilized and it was determined that they werent caused by my thyroid problems.

    The blisters did go away though.....a few months after RAI the blisters cleared up.

    What meds are you taking?? I took a few different brands and found that I reacted to the dyes. The synthetic pills are colored according to dosage. I was not doing well with my meds and then I requested white pills instead. The white ones only came in one dose so I had to take a few and use a pill cutter to get my correct dose.

    I played around with my meds (and the doses) quite a bit....because for a long time I was convinced all my problems were from not being dosed correctly. My endo. got tired of fighting with me and actually let me try different things. I made myself go way hyper a couple times but did not experience any breakouts during those times. I would have my levels tested constantly and I definately was over-medicating.

    Anyways, I found that I tolerated the natural stuff much better....no dyes or other junk to worry about. I've been on Armour about 4 years now....with no problems.

    It would seem to me that your body is reactive to something. Were the breakouts occuring before you started the thyroid replacement?

    Hi Rachel,

    Sorry for the delay, as the last few days have been more hectic for me. I do want to thank you for your quick response and filling me in on some of your experiences ( it is so great to have these forums to do just that with one another and have the very best input from those who have traveled the path).

    It does sound as if you have had your "nightmares" with the doctors and their more than fumbling actions in undoing your health even more. One does have to start to fill in the blanks when the doctors lack the time and experience to help the individual patient, and we begin the journey of taking a hold of our own bodies and becoming our best advocate, as so many here have done (yeah)!

    Your story has such a familiar ring to it, with your intolerances and hyper-sensitive reactions, same for myself. Which brought me to the same conclusion with the dyes and changing over to the fifties and splitting the pills up to make my daily dose of seventy-five, a few years ago. I am though not the most accurate with cutting those pills in half.

    When I had my RAI ( which again I'll state, wish I knew then what I have learned since ), my levels really jumped quickly and at a TSH of 113 my doctor at that time didn't know how I was even walking around, I do have to admit I was feeling pretty bad. I also had just a week before being dx with my Graves, one of my parathyroids removed which is actually a rare condition, so at least going really hypo was so much better than dealing with these two diseases, it's pretty amazing what our bodies can go through.

    I have also done the switching around and trial and error with the med's and have tried the natural Armour, but not realizing it at the time ( gosh we have to learn alot, sometimes the hard way ), my ferritin, was at a 18 border line-low, and this just makes trying to tolerate the levoxyl increase almost unbearable with racing heart symptoms, so the Armour was just one pill and quickly taking a beta-blocker to help with the heart racing,and not to repeat. I am happy that for you it is helping and that you have found the "right" med and dose.

    Happy also for you that you did not have this on-going problem with the blisters and your skin. To answer your question about the break-outs, yes I was having them before the Graves dx, but this has waxed and waned over the years. The trigger for them is the sun and I have to think at this stillpoint with my health that it may well be an drug-induced lupus reaction and the only drug that I am taking is the levoxyl which can be one of the drugs that can promote this kind of adverse reaction and upon removing the offending drug can correct itself, and you know I can't do that. When I was in my hyper state my body was doing the same thing as it is now with the hormone replacement I have to take ( it is always so much worse when I go out in the sun ). What do you think of this theory? If anyone here has some input on this I would greatly appreciate their thoughts also. I realize that if this is the case I will more than likely have to have this a part of my life. I have tried the medicines to help calm the lesions down but I can't handle those.

    I have to apologize with this post concerning mostly thyroid to others here, but I do hope that it might help with possible problems that others might have and questions that often don't get answered.

    Thanks again Rachel for your help and I look forward to your message and from anyone else that has suggesttions.

    Susie


  25. One of the things that my doctor is looking at as a possible "trigger" for my problems was the anesthetic used prior to the work that was done. We think it *may* have caused some problems that set off this cascade of events which *may* have put my body under stress and also impaired my abilty to detox.

    The injection contained epinephrine which many people can be sensitive to. It also contains sulfites which can also cause problems for some people.

    The epinephrine causes the blood vessels to close and it revs up the nervous system. It provokes a "fight or flight" response. Sometimes this effect lasts alot longer than it should and during that time other problems may develop. Since I had other things going on....such as mercury fillings getting drilled out after the injection....its possible that my system became overwhelmed.

    All I can remember about the injection is that it *had* to of been very unpleasant for me because when I returned to have my crowns put in I actually begged the dentist to NOT use the injection. I was willing to deal with the pain but he would not allow it.

    I also recall him using the anesthetic excessively. I recall that each time my whole head was numb....not just the area around my mouth...but my entire head. It also lasted for most of the day instead of wearing off after an hour or two.

    In addition I learned that people with certain conditions...particularly Graves Disease should be very careful with epinephrine. It is recommended that epinephrine be avoided or used with extreme caution.

    This dentist was aware that I had Graves....but he definately wasnt cautious with the administration of these injections. He was also not at all cautious with the removal of my mercury fillings. :angry:

    So now I have to try to get a small sample of the anesthetic so that my doctors can test it and determine if it was a problem or not.

    Hi Rachel,

    Just wondering if you had looked into the epinephrine shots that don't have that in them? I know that like many I can not do this type of shot as I also have Graves disease that was not dx until much later in life ( I am now 59 ).

    With dental work, and skin cancer and other medical surgeries in the past and even before I was dx with the Graves, I had to explain to the doctors not to use that type of anesthectic as my heart rate would beat almost uncontrollably, causing shortness of breath and other problems.

    Have your doctors suggested using this kind instead?

    I would like to also ask you if by chance you have had any kind of skin problems before getting dx with your Graves? If so, what would it be? I have had breakouts on my forehead ( next to the hairline ) and a bit lower on my face.

    I had this for a number of years and the doctors could not figure it out. This did improve, but, now when I go outside in the sun even for a short time and this would be a more direct sun exposure I break out with a welt looking sore ( three-four of them ) that at first is a little itchy, and then hurts and they start to scab over ( they are filled a bit with a type of infection almost look ) this all takes place with in a few hours of exposure, sorry to get into this with such detail, and believe me it is so embarrassing if I didn't have bangs I would probably never go out of the house. These sores last for days as they try to dry out and heal. I have a few years ago been tested for lupus but it was negative. The reason I am asking you and any of our friends here who are on a hormone replacement for low thyroid ( and for sure you know ours is with being treated with RAI ), when getting too much of this kind of medicine it will show itself in this manner of the outbreaks for myself, let me add that I do see this connection when usually I am over-medicated. Again I am sorry to be so long winded with this question, it is that I usually don't get to "talk" to many other Graves people.

    If you or anyone here could help me with this I would greatly appreciate any responses as the doctors do not seem to have any answers except of course to medicate and I tried this and could not tolerate them ( as most medicines make my body react ).

    Thanks Rachel, the best to you and your health,

    Susie

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