Guest guest Posted August 7, 2012 Report Share Posted August 7, 2012 Carmen, sorry to hear you're suffering so badly. Have they tested you for Crohn's or 's? That severe diarrhea and weight loss even when you're gluten-free seems to indicate something else is going on besides thyroid. I take it you've had other food sensitivity testing? > > > > Hi, I'm new to the board so I want to introduce myself. > > > > I have Hashimoto for 17 years, and have been diagnozed with Fibromyalgia and CFS. > > > > My current doctor says that all the damage is caused by the thyroid antibodies and the only solution is to have a total thyroidectomy to get rid of the antibodies. I can't decide if this surgery is a cure for real, or if this would be let me more weak. So I'm looking for more answers. > > > > Thank you, > > Carmen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2012 Report Share Posted August 8, 2012 They don't perform some tests where I live. So part of the problem is trying to understand what is going on. For instance, I can't do a TRab test, lactose, and so on. Some of them are to expensive. They wanted to charge $260 for a D3 level test, so I didn't do it.I did a sugar intolerance test, which is more general and they said that if I had lactose, or glucose or fructose intolerance, it will show. This came back negative.They performed a colonoscopy. According to the doctor, my colon was "perfect". You know with Crohns you can see injuries. That's why I deduced I don't have Crohns.They just diagnozed me with IBSSine the cortisol 24 hour test is normal, they discarded s. I think I was having adrenal fatigue, because of the symptoms. Also when I started taking Medrol, some of the symptoms improved, even the IBS ones. My diarrhea isn't that severe. I was having it 3 times a week, and now with the prednisolone I have one episode a week. So they doesn't care about it. It doesn't meet the classic parameters to call it a diarrhea. Even though it doesn't meet the parameters and nobody cares, it's enough to let me exhaused and losing the 1kg that I managed to gain through the week..It has been like this all the time. My labs show some issues, but they are not so bad. There are patients with a higher hypothyroidism, and their biggest concern is thw weight. Patients with truly severe diarrhea, patients with more anemia, with evident food intolerances (....) and they manage to go outdoors. I live housebound. So why am I in such bad shape? Why am I so weak?That's why they diagnozed me with CFS. I don't like this, because this diagnosis is like telling you : "we can't do anything more to help you". After that, they prescribed me antidepressants, and this was dreadful. I ended up in the ER with the nervous system altered. I couldn't walk or even speak.Now that I'm not taking medication (just the hormones), I feel better, but I'm still not able to have a normal life. So my new doctor insists that we have to take out the thyroid (I'm poisoning myself with it he said), and my immune system will stop attacking all my body.I belive that I'm so ill because of a wrong thyroid treatment management, which led me to metabolic issues, malabsortion and anorexia. The thing is that being like this, my body can't work with the supplements or medication. (It's like giving nitro to a 70's car, lol! The engine will explode!)Now I'm broke and frustrated with so much useless tests and treatments. However I still hope that there's an answer, with things accessible to me.All ideas will be appreciated. :)Carmen To: Thyroiditis Sent: Tuesday, August 7, 2012 9:22 PM Subject: Re: new member+labs Carmen, sorry to hear you're suffering so badly. Have they tested you for Crohn's or 's? That severe diarrhea and weight loss even when you're gluten-free seems to indicate something else is going on besides thyroid. I take it you've had other food sensitivity testing? > > > > Hi, I'm new to the board so I want to introduce myself. > > > > I have Hashimoto for 17 years, and have been diagnozed with Fibromyalgia and CFS. > > > > My current doctor says that all the damage is caused by the thyroid antibodies and the only solution is to have a total thyroidectomy to get rid of the antibodies. I can't decide if this surgery is a cure for real, or if this would be let me more weak. So I'm looking for more answers. > > > > Thank you, > > Carmen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2012 Report Share Posted August 8, 2012 Carmen, Someone is ripping someone off! We can get vitamin D tests (D2 + D3) for GBP25 - around USD39. They use a finger-prick method so no issues getting a blood draw. Overseas customers pay a bit more: http://www.vitamindtest.org.uk/ Or you can use the vitamin D council USD65 test: http://www.zrtlab.com/vitamindcouncil/ In my book, one test is often not enough. I had one to see I was under, one to see I had recovered, and another which showed me slipping down again (despite taking 1000 IU a day). So all too glad that they did not cost USD260 each. I 100% feel better with decent D levels - and it has helped with nausea which I think correlated closely with the D levels I must have had. Disappeared when I have enough and returns (mildly) as I go downhill. Rod > > They don't perform some tests where I live. So part of the problem is trying to understand what is going on. For instance, I can't do a TRab test, lactose, and so on. Some of them are to expensive. They wanted to charge $260 for a D3 level test, so I didn't do it. > I did a sugar intolerance test, which is more general and they said that if I had lactose, or glucose or fructose intolerance, it will show. This came back negative. > They performed a colonoscopy. According to the doctor, my colon was " perfect " . You know with Crohns you can see injuries. That's why I deduced I don't have Crohns. > > They just diagnozed me with IBS > > Sine the cortisol 24 hour test is normal, they discarded s. I think I was having adrenal fatigue, because of the symptoms. Also when I started taking Medrol, some of the symptoms improved, even the IBS ones. My diarrhea isn't that severe. I was having it 3 times a week, and now with the prednisolone I have one episode a week. So they doesn't care about it. It doesn't meet the classic parameters to call it a diarrhea. Even though it doesn't meet the parameters and nobody cares, it's enough to let me exhaused and losing the 1kg that I managed to gain through the week.. > > It has been like this all the time. My labs show some issues, but they are not so bad. There are patients with a higher hypothyroidism, and their biggest concern is thw weight. Patients with truly severe diarrhea, patients with more anemia, with evident food intolerances (....) and they manage to go outdoors. I live housebound. So why am I in such bad shape? Why am I so weak? > That's why they diagnozed me with CFS. I don't like this, because this diagnosis is like telling you : " we can't do anything more to help you " . After that, they prescribed me antidepressants, and this was dreadful. I ended up in the ER with the nervous system altered. I couldn't walk or even speak. > Now that I'm not taking medication (just the hormones), I feel better, but I'm still not able to have a normal life. So my new doctor insists that we have to take out the thyroid (I'm poisoning myself with it he said), and my immune system will stop attacking all my body. > > I belive that I'm so ill because of a wrong thyroid treatment management, which led me to metabolic issues, malabsortion and anorexia. The thing is that being like this, my body can't work with the supplements or medication. (It's like giving nitro to a 70's car, lol! The engine will explode!) > > Now I'm broke and frustrated with so much useless tests and treatments. However I still hope that there's an answer, with things accessible to me. > All ideas will be appreciated. > > Carmen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2012 Report Share Posted August 8, 2012 Rod, thanks for the links. Since I live in South America, I don't think I can order. That's the problem I was talking about. I could bring something from outside, but so many tests, supplements.... it's a difficult task. So I'm trying to use mostly things that I find here.My doctor said: why do you want a vit D test? You live in Ecuador, not in England!! You have all year sunshine!!!It's interesting that you found vit D and nausea correlated. I never heard about. I just know that I have nausea all day long.The calcitriol I'm currently taking is a free form of D3, therefore more powerful. I just don't know the equivalence with the "normal" D3. I'm going to slowly increase the usual vit D and see what happens.Wish me luck!!Carmen To: Thyroiditis Sent: Wednesday, August 8, 2012 3:10 PM Subject: Re: new member+labs Carmen, Someone is ripping someone off! We can get vitamin D tests (D2 + D3) for GBP25 - around USD39. They use a finger-prick method so no issues getting a blood draw. Overseas customers pay a bit more: http://www.vitamindtest.org.uk/ Or you can use the vitamin D council USD65 test: http://www.zrtlab.com/vitamindcouncil/ In my book, one test is often not enough. I had one to see I was under, one to see I had recovered, and another which showed me slipping down again (despite taking 1000 IU a day). So all too glad that they did not cost USD260 each. I 100% feel better with decent D levels - and it has helped with nausea which I think correlated closely with the D levels I must have had. Disappeared when I have enough and returns (mildly) as I go downhill. Rod > > They don't perform some tests where I live. So part of the problem is trying to understand what is going on. For instance, I can't do a TRab test, lactose, and so on. Some of them are to expensive. They wanted to charge $260 for a D3 level test, so I didn't do it. > I did a sugar intolerance test, which is more general and they said that if I had lactose, or glucose or fructose intolerance, it will show. This came back negative. > They performed a colonoscopy. According to the doctor, my colon was "perfect". You know with Crohns you can see injuries. That's why I deduced I don't have Crohns. > > They just diagnozed me with IBS > > Sine the cortisol 24 hour test is normal, they discarded s. I think I was having adrenal fatigue, because of the symptoms. Also when I started taking Medrol, some of the symptoms improved, even the IBS ones. My diarrhea isn't that severe. I was having it 3 times a week, and now with the prednisolone I have one episode a week. So they doesn't care about it. It doesn't meet the classic parameters to call it a diarrhea. Even though it doesn't meet the parameters and nobody cares, it's enough to let me exhaused and losing the 1kg that I managed to gain through the week.. > > It has been like this all the time. My labs show some issues, but they are not so bad. There are patients with a higher hypothyroidism, and their biggest concern is thw weight. Patients with truly severe diarrhea, patients with more anemia, with evident food intolerances (....) and they manage to go outdoors. I live housebound. So why am I in such bad shape? Why am I so weak? > That's why they diagnozed me with CFS. I don't like this, because this diagnosis is like telling you : "we can't do anything more to help you". After that, they prescribed me antidepressants, and this was dreadful. I ended up in the ER with the nervous system altered. I couldn't walk or even speak. > Now that I'm not taking medication (just the hormones), I feel better, but I'm still not able to have a normal life. So my new doctor insists that we have to take out the thyroid (I'm poisoning myself with it he said), and my immune system will stop attacking all my body. > > I belive that I'm so ill because of a wrong thyroid treatment management, which led me to metabolic issues, malabsortion and anorexia. The thing is that being like this, my body can't work with the supplements or medication. (It's like giving nitro to a 70's car, lol! The engine will explode!) > > Now I'm broke and frustrated with so much useless tests and treatments. However I still hope that there's an answer, with things accessible to me. > All ideas will be appreciated. > > Carmen Quote Link to comment Share on other sites More sharing options...
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