Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Oh, I was really hoping someone would know something but thanks anyway. Best wishes to you all. > I wonder if any of you can help me with some info. I had a tumor > about 8 years ago that was diagnosed as a Hurthle cell adonoma. It > was about the size of an egg by the time any doctor would believe me > that it was there. The lump was there for about 8 years and was > slowy growing. I first noticed it when I was in college at about age > 20. I was having problems swallowing and also had these sort of > choking fits. My hair was falling out and I was exhausted all the > time. I started getting migraine head aches. I had laringitus > frequently and coughed alot. Finally I found a doctor who would at > least do some test. They did a sort of scan with radioactive iodine > and determined that it was 'cold'. My blood test for thryoid > disease ie hypo, hyper, Hashimotos, grave etc. were all normal. They > did liver test which came back high, whatever that means. It was too > big for needle biopsy so they just took the whole thing out. They > could not tell right off the bat if it was cancer or not. I had to > stay in the hospital for a few day until they decided. Then they > decided to classify it as a begnin adonoma instead of a carcinoma > based only on the fact that it had not invaded vascular or other > tissues. I was put on .1 MG of synthroid daily and sent home. The > swollowing returned to normal and the choking stopped for awhile and > my hair grew back but I have remained exhausted since. I have > gained weight and feel weaker by the day. The swollowing problems > have recently returned and some choking fits have started again. My > thyroid blood test are still normal and my liver blood test are > still abnormal. I have started have extreme abdoninal pain. They > took an altra sound and found what they think are fat deposits in my > liver. I am afraid they are hurthle cell tumors. I just want a > better quaility of life then I have now. You know, with some energy > and strength back. Have any of you had or heard of any similar > experiences? My doctor is not very helpful and I am so tired all > the time that it is hard to search for a new one. I'd be very > greatful for any info or advice anyone might have. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 > > I wonder if any of you can help me with some info. I had a tumor > > about 8 years ago that was diagnosed as a Hurthle cell adonoma. > It > > was about the size of an egg by the time any doctor would believe > me > > that it was there. The lump was there for about 8 years and was > > slowy growing. I first noticed it when I was in college at about > age > > 20. I was having problems swallowing and also had these sort of > > choking fits. My hair was falling out and I was exhausted all the > > time. I started getting migraine head aches. I had laringitus > > frequently and coughed alot. Finally I found a doctor who would at > > least do some test. They did a sort of scan with radioactive > iodine > > and determined that it was 'cold'. My blood test for thryoid > > disease ie hypo, hyper, Hashimotos, grave etc. were all normal. > They > > did liver test which came back high, whatever that means. It was > too > > big for needle biopsy so they just took the whole thing out. They > > could not tell right off the bat if it was cancer or not. I had > to > > stay in the hospital for a few day until they decided. Then they > > decided to classify it as a begnin adonoma instead of a carcinoma > > based only on the fact that it had not invaded vascular or other > > tissues. I was put on .1 MG of synthroid daily and sent home. > The > > swollowing returned to normal and the choking stopped for awhile > and > > my hair grew back but I have remained exhausted since. I have > > gained weight and feel weaker by the day. The swollowing problems > > have recently returned and some choking fits have started again. > My > > thyroid blood test are still normal and my liver blood test are > > still abnormal. I have started have extreme abdoninal pain. They > > took an altra sound and found what they think are fat deposits in > my > > liver. I am afraid they are hurthle cell tumors. I just want a > > better quaility of life then I have now. You know, with some > energy > > and strength back. Have any of you had or heard of any similar > > experiences? My doctor is not very helpful and I am so tired all > > the time that it is hard to search for a new one. I'd be very > > greatful for any info or advice anyone might have. Thanks Hi to JE, I read your story and wondered why yu didn't ask for a second opinion on the Hurthle cell adonoma. You must do it, just to make sure that it's not canceroues. If your doc isn't very helpful, concsider looking for another doc. Maybe a more experienced and familiar with thyroid problems. Docs do make mistakes... sometimes. Feel well! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 You made no mention of getting a second opinion on that hurthle cell. Did you have a second opinion? If you are tired and only on .1 synthroid you may need a dose increase. See a good endo to straighten your situation out. Being tired is not an excuse for not getting proper medical care....everyone on this list is tired when they prepare for a scan but we all get through it, so can you! Gail dx: 1968, TT, pap. & foll. well differentiated w/hurthle cell, RAI, rad.neck dissection,lung surgery, hashimoto, tg antibody 575, iodine resistant,existing thyca nodules in lungs. Last surgery 1972 > I wonder if any of you can help me with some info. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Thank you for your replys! It is good to hear from people who understand. I'm not sure what you mean by 2d opinion for the HCA. Do you mean a second pathologist? If so, do you know know how to go about getting a second pathologist? Wouldn't they need a sample of your tumor? If you mean a seond opinion from a GP or an endocrionologist LOL yes I've been to many docs. I had to go to 4 doctors before I found the one who believed me about the lump and had test done. Since the surgery I've been to 3 GPs and 2 Endos. Pretty much all they do are thyroid blood test and as I said, they always come back normal. I feel that I could use a higher dose of snythroid but as my test are always normal my doctors do not agree. I was still pretty young when this happened and had no parents to kind of help me figure out what to do so I do think I kind of fell through the cracks although not for lack of my trying to get help. I'm of course older and wiser now and still trying What worries me the most is the pain and the abonormal liver test and ultrasound. This may have nothing to do with the HCA, I know, I'm just kind of worried that it might have really been HCC and has now spread to the liver. I just wondered if anyone here had a similar experience or had even heard of anything like that. BTW I've had a new doc for a couple of months and will give a chance at working with him. Hopefull I will not have to go doc searching again I do find that physically and emotionally draining and I bet many of you have experienced that. > > I wonder if any of you can help me with some info. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 > > > I wonder if any of you can help me with some info. Hi, I hope you kept the Pathologic report, (as other medical records..). You may go to another Payhologist who is experienced to distinguish between normal and cancerous cells... and of course ask the thyroid slides to be sent to be re examined by the other Pathologist. I hope it'll still be benign! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 HI, Thanks again for replying and thanks for the wish . Yes, I have the path report. Will look into seaching for a different pathologist then. Problem with Hurthle cells is that benign and malignat hurthle cells look identical. They classify them as one or the other pretty much on tumor size and whether the tumor has invaded bv or surrounding tissues. Mine was a big one but had not invaded so they decided to call it benign. Actually they told me either way the treatment was the same. Surgery to remove it which is what they did. They said even if it was cancer, Hurthle cells are resistant to chemo and radiation anyway. My concern now is the liver stuff. BTW someone mentioned eveyone is tired while preparing for a scan. What does preparing mean? I am pretty much exhausted all the time. I have about 3 or 4 good hours in the morning and then the rest of the day is total exhaustion. Is that how it is for most of you? If so, has anyone found anything that helps? Thanks > > > > I wonder if any of you can help me with some info. > > Hi, > > I hope you kept the Pathologic report, (as other medical records..). > You may go to another Payhologist who is experienced to distinguish > between normal and cancerous cells... and of course ask the thyroid > slides to be sent to be re examined by the other Pathologist. > > I hope it'll still be benign! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 > > > > > I wonder if any of you can help me with some info. > > > > Hi, > > > > I hope you kept the Pathologic report, (as other medical > records..). > > You may go to another Payhologist who is experienced to > distinguish > > between normal and cancerous cells... and of course ask the > thyroid > > slides to be sent to be re examined by the other Pathologist. > > > > I hope it'll still be benign! Hi, Before you go for a scan, you have to be very Hypo. When the TSH is high, most people feel bery tired. I got very hypo only once, but despite my high tsh (>120), I didn't feel more tired than usual... I don't know about Hurtle cell, but for other thyca' the treatment is RAI-Radio Active Iodine- to destroy the thyroid remnants after the TT. Since you had you TT 8 years ago, I guess medicine developped and maybe things docs didn't know then, are more clear now. Feeling tired could be a result of various conditions. I guess you must do more blood tests to find out. I hope you'll feel better! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 If your liver enzymes are high you need to find out why - and don't automatically assume it is connected to your hurtles. There is also a condition known as " fatty liver " which responds to diet that contains a lot of Low Carb fruits and veggies, good protein and virtually no grains or any whites. Milk thistle is also a liver protectorant and might help. Excuse me for asking, but is alcohol consumption a problem? The human body is designed to poop out in the afternoon and some societies recognize that and allow for it with siesta time. Additionally, if you are taking your thyroid med in the morning, and particularly if it is not enough, it's waning in the afternoon. Can you give us some of your test results such as your TSH level? Perhaps our experts may be able to give you advice based on your readings. Helen, TT PAP 2/02 RAI, 200mci, 4/02 Scan 5/02 Up to .175 levoxyl hPTH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Hi Helen, TSH .07 .08 range. I don't drink or use drugs and never have. They've tested for hepititis all negetive. I don't have high cholesteral or high trigyceride levels or anything else that is a risk factor for fatty liver. I am not making any assumptions about anything just asking questions and gathering info and wondering if anyone out there has had a similar experience. Thanks for the reply BTW take I used to take my synth in the morning but new doc suggested taking it at bedtime to see if it made a difference. It didn't. Do you find it makes a difference? > If your liver enzymes are high you need to find out why - and don't > automatically assume it is connected to your hurtles. There is also a > condition known as " fatty liver " which responds to diet that contains a lot > of Low Carb fruits and veggies, good protein and virtually no grains or any > whites. Milk thistle is also a liver protectorant and might help. Excuse > me for asking, but is alcohol consumption a problem? > > The human body is designed to poop out in the afternoon and some societies > recognize that and allow for it with siesta time. Additionally, if you are > taking your thyroid med in the morning, and particularly if it is not > enough, it's waning in the afternoon. > > Can you give us some of your test results such as your TSH level? Perhaps > our experts may be able to give you advice based on your readings. > > Helen, TT PAP 2/02 > RAI, 200mci, 4/02 > Scan 5/02 > Up to .175 levoxyl > hPTH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Hi back, No I take my levoxyl in the morning. I tried taking it in the " premorning " a couple of times, but it upset my stomach too much. My dose, when it is finally determined, will take into consideration that I take a protonix with the levoxyl and a couple of diabetes meds. Plus a cup of coffee. No breakfast. I can understand your frustration - I have a list of ailments and meds that seems to be miles long and I absolutely hate having to break in a new doctor. But sometimes it is necessary. Perhaps you need to contact your local medical society or hospital and see if there is someone in the area who specializes in liver problems. In the meantime, be assured we are here to provide support and our questions are a sincere attempt to help. Helen, TT PAP 2/02 RAI, 200mci, 4/02 Scan 5/02 Up to .175 levoxyl hPTH Quote Link to comment Share on other sites More sharing options...
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