Guest guest Posted January 9, 2002 Report Share Posted January 9, 2002 Hi guys: I need some advice if anyone can give it to me. I asked my oncologist to do a thyroid antibodies test on me when I went on Fri. (Myra suggested it as the first thing I should do at this point.) He called today with all my blood results and said he thought that one was slightly positive (it was negative 4 years ago). He didn't have it in front of him and he said he'll FAX it to me. Anyway, if that is the case, and all my other thyroid levels are normal: could this have anything to do with my hives? And, where do I go from here? Any advice appreciated. Also, Jackie got me thinking about the mastocytosis and I called the allergist's office today and they said I was tested for it last year and it was negative. (Not to confuse you guys, but that is the doctor's office that I don't go to regularly any more and where the nurse made that comment about consulting a doctor I see on a regular basis--so, I don't know exactly what tests he did to deem it negative and, of course, I was a little nervous to ask. But, I think I'll leave that one alone for the moment). Thanks, Tami (NJ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2002 Report Share Posted January 9, 2002 Hi Tami: If you are making antibodies against your thyroid, you could benefit by taking thyroid hormone, even if your actual thyroid hormone levels are normal. My thyroid hormones were normal but I tested slightly positive for antibodies against my thyroid when my hives started almost 2.5 years ago. I started on thyroid hormone about two years ago and it pushed me into remission for 6-8 months, without eating the low histamine diet that I'm now on too in order to get rid of my flare-up that started a year ago. Part of the reason I'm in remission now is that I increased my thyroid hormone dose to put me into the low end of the " normal " TSH (Thyroid Stimulating Hormone) range. If your TSH value is in the high end of normal, you might try to convince your doc to let you take thyroid hormone to get the # down into the low range of " normal. " However, look out for food dyes in the pills. I started on a dose that had colored pills and my hives got worse! I now take my dose using 50ug pills that don't contain dyes. Herea the abstract of the research study that showed that taking thyroid hormone can help people with CU and Hashimoto's. I've added some explanations of the terminology. Authors Rumbyrt JS. Katz JL. Schocket AL. Institution National Jewish Center for Immunology and Respiratory Disease, Denver, CO, USA. Title Resolution of chronic urticaria in patients with thyroid autoimmunity. Source Journal of Allergy & Clinical Immunology. 96(6 Pt 1):901-5, 1995 Dec. Abstract BACKGROUND: Autoimmune disease has been implicated as a cause of chronic urticaria, and anti-thyroid antibodies have been found in patients with chronic urticaria. Because some patients with chronic urticaria and autoimmune hypothyroidism have had clinical resolution with thyroid hormone replacement, we investigated the effect of thyroid hormone in euthyroid (this means that your thyroid hormone levels are normal) patients with chronic urticaria and thyroid autoimmunity. METHODS: Ten euthyroid patients with refractory (not responsive to meds) hives were treated with thyroxine (thyroid hormone). Seven patients had elevated anti-thyroid antibodies at baseline. Thyroid function and anti-microsomal and anti-thyroglobulin antibody levels (these look at antibodies against your thyroid) were monitored during treatment. If a clinical response was achieved, thyroxine was discontinued and restarted if symptoms recurred. RESULTS: Seven patients with elevated anti-thyroid antibodies reported resolution of symptoms within 4 weeks. Three patients without elevated anti-thyroid antibodies did not respond. Five patients had a recurrence of symptoms after treatment was stopped, which resolved after treatment was restarted. Thyroid-stimulating hormone levels decreased in all patients with a clinical response. No correlation between clinical resolution and anti-thyroid antibody levels was seen (this means that the thyroid antibody levels didn't change in people who got better after taking thyroid hormone). CONCLUSION: Thyroid autoimmunity in euthyroid patients may be associated with chronic urticaria, and treatment with thyroid suppression can result in clinical remission. > Hi guys: > > I need some advice if anyone can give it to me. I asked my oncologist to do > a thyroid antibodies test on me when I went on Fri. (Myra suggested it as the > first thing I should do at this point.) He called today with all my blood > results and said he thought that one was slightly positive (it was negative 4 > years ago). He didn't have it in front of him and he said he'll FAX it to > me. Anyway, if that is the case, and all my other thyroid levels are normal: > could this have anything to do with my hives? And, where do I go from here? > > Any advice appreciated. > > Also, Jackie got me thinking about the mastocytosis and I called the > allergist's office today and they said I was tested for it last year and it > was negative. (Not to confuse you guys, but that is the doctor's office that > I don't go to regularly any more and where the nurse made that comment about > consulting a doctor I see on a regular basis--so, I don't know exactly what > tests he did to deem it negative and, of course, I was a little nervous to > ask. But, I think I'll leave that one alone for the moment). > > Thanks, Tami (NJ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 Hi Tami, OH HOW I HATE CONFUSED INFORMATION!!!!! UUUGGGGHHHHHH First of all request all of your medical records, read through them yourself word for word. You will be amazed what they miss or dismiss as nothing. In Alena's case what they dismissed as nothing is what lead me to believe Masto was the culprit. Find out exactly which test was off. There is a link between thyroid and hives. If you need articles I will repost them. Also, I know you probably don't want to hear this but any test can RULE IN masto but no test can RULE OUT mast. Ask what exact test they used when you are ready. Odds are it was not really ruled out. Much Love, ~Alena's Mom Re: A question or 2 Hi guys:I need some advice if anyone can give it to me. I asked my oncologist to do a thyroid antibodies test on me when I went on Fri. (Myra suggested it as the first thing I should do at this point.) He called today with all my blood results and said he thought that one was slightly positive (it was negative 4 years ago). He didn't have it in front of him and he said he'll FAX it to me. Anyway, if that is the case, and all my other thyroid levels are normal: could this have anything to do with my hives? And, where do I go from here?Any advice appreciated.Also, Jackie got me thinking about the mastocytosis and I called the allergist's office today and they said I was tested for it last year and it was negative. (Not to confuse you guys, but that is the doctor's office that I don't go to regularly any more and where the nurse made that comment about consulting a doctor I see on a regular basis--so, I don't know exactly what tests he did to deem it negative and, of course, I was a little nervous to ask. But, I think I'll leave that one alone for the moment).Thanks, Tami (NJ) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~If you do wish to unsubscribe then you can click on the following link: urticaria-unsubscribe ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new.Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 Hi again guys, , you're right, I will probably have to request my entire medical record from them. I know they charge for it, but will they release it to me or only to another doctor? Also, we may be on to something here. I did test abnormal for the thyroid antibodies test. Where do I go from here? What type of Dr. do I see--endocrinologist, immunologist...????There could be a link to the hives, here, right? Keeping my fingers crossed. Tami (NJ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 Hi Tami: Your medical records are legally yours and you have every right to have copies of them. They might charge you a photocopy fee or a handling fee. Probably the best doc to see for abnormal thyroid antibodies is an endocrinologist. There could be a link with your hives. Take the research paper abstract by Rumbyrt from Denver Jewish Hospital with you to show the doc that there is a link and that hives have been improved by taking thyroid hormone for people with abnormal thyroid antibodies. I've found that docs respond best when I can show them scientific proof that something works. Good luck!! > Hi again guys, > > , you're right, I will probably have to request my entire medical > record from them. I know they charge for it, but will they release it to me > or only to another doctor? > > Also, we may be on to something here. I did test abnormal for the thyroid > antibodies test. Where do I go from here? What type of Dr. do I > see--endocrinologist, immunologist...????There could be a link to the hives, > here, right? > > Keeping my fingers crossed. > > Tami (NJ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Hi Tami, They must release them to you if you request so. Yes they will charge (a ridiculous amount) but it is worth EVERY penny. Had I not requested Alena's there is so much I would not have known like the low IgE and that her lead level was high. I personally would see an endocrinologist. Much Love, ~Alena's Mom Re: A question or 2 Hi again guys,, you're right, I will probably have to request my entire medical record from them. I know they charge for it, but will they release it to me or only to another doctor?Also, we may be on to something here. I did test abnormal for the thyroid antibodies test. Where do I go from here? What type of Dr. do I see--endocrinologist, immunologist...????There could be a link to the hives, here, right?Keeping my fingers crossed.Tami (NJ) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~If you do wish to unsubscribe then you can click on the following link: urticaria-unsubscribe ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new.Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Yes, Tami, they will charge you an arm and a leg! My sons records for the first part cost approx $350.00 and now if I want the stuff that's on microfilm, they are going to charge me $500.00, but I need to have them with me, so I will pay it, when I get the rest of the money!! Good luck, take care, Ann > >Reply-To: urticaria >To: urticaria > >Subject: Re: A question or 2 >Date: Fri, 11 Jan 2002 08:58:33 -0500 > >Hi Tami, > >They must release them to you if you request so. Yes they will charge (a >ridiculous amount) but it is worth EVERY penny. Had I not requested >Alena's there is so much I would not have known like the low IgE and that >her lead level was high. I personally would see an endocrinologist. Much >Love, ~Alena's Mom > Re: A question or 2 > > > Hi again guys, > > , you're right, I will probably have to request my entire medical >record from them. I know they charge for it, but will they release it to >me or only to another doctor? > > Also, we may be on to something here. I did test abnormal for the >thyroid antibodies test. Where do I go from here? What type of Dr. do I >see--endocrinologist, immunologist...????There could be a link to the >hives, here, right? > > Keeping my fingers crossed. > > Tami (NJ) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Tami, With the thyroid issue you are now stuck between a rock and a hard place! I too have high antibodies and the endocrinologist I had said she had experienced this " phenemon " (meaning urticaria caused by Hashimotos Thyroiditis) with several patients. She was cautious enough to pick a low dosage of synthroid where the pill was not colored with artificial dyes. The different doseages are color coded. She treated my thyroid although the hormone level was within the range. Where in the range I do not remember. I have read that in some folks, the range has to be at the lower end for the hives to stop. The GP I had refused to treat a thyroid because he said it was rediculous. The allergist was aware of a thyroid connection and was open to the idea but sent me back to the endocrinologist. UNFORTUNATELY, she left the area and relocated to Atlanta. We never got to up the doseage to see if it would work. The allergy specialist I have now at the Hershey Medical Center said he could handle the thyroid issue. He hasn't done a damn thing. When you are on synthroid, you really should have your thyroid hornomes checked periodically to make sure the dosage is correct. He never did that and my synthroid prescription ran out. That is when I called a female surgeon who removed a cyst from my breast. I told her I needed someone who could be a medical bridge between the allergist and the endocrinologist AND my synthroid prescription was up. She recommended a unique group of doctors and extended my prescription for me until I could hook up with the endo doctor. So, I have an appointment with a new allergist on the 30th and within the same practice (they share my medical chart) will be the endocrinologist. I do not know how good they are. I am banking on their working relationship to benefit my condition. Sorry for being so lengthy here, I would find a similar team or at lease an allergist who is aware of the thyroid issue and can refer you to an endo doctor. in Pa. _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Hi : Thanks for the information. I don't have a 'team' of doctors and all my doctors are scattered about. If I head of one in my area, I would consider them; in the meantime I think I should look for an endocrinologist who is familiar with the hive connection. What do you think? I think I'm stuck between a rock and a hive place! Tami (NJ) Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.