Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 > > my daughter just got diagnosed with jra in march its progressing so quick she just started injectable methotrexate (sorry not sure on spelling) shes been on it 2 weeks today and already the swelling is getting worse she has developed water boils on the back of both knees. when first diagnosed it was only in both knees now its in both feet both ankles both knees, both wrist, both hands and both elbows. I never even heard of jra until she got diagnosed and i am soo scared shes in so much pain everyday. > Mam you sound just like my my daughter just got diagnosed In jan of this year I know how you feel I never heared of it untill my daughter was dignosed right now my daughter is on Enbrel she just started last friday it was her first injection she is also on the methtrexate as well and the steriod it is very scary everytime my daughter had a flare up which have been 5 already started with just the knees as well they had to put steriod shots in her legs to realive the pain and drain some fluid out everytime they did that she would be walking or able to use that joint again she had the shots in both knees her right knee again elbow and ankel your just like me asking questions and not know what to do are you taking her to a rhematolist? my daughter inflamtion is not under controlled as well thats why they have in so many medicnies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 I would call her doctor first thing in the morning. Thank God my little girl's didn't progress that badly that quickly, but that also means that I don't have fantastic advice for you. I think that they are used to panicking parents calling up with situations like these. I would explain to them the same way you explained it to us. That definitely deserves a call back. > > > > my daughter just got diagnosed with jra in march its progressing so quick she just started injectable methotrexate (sorry not sure on spelling) shes been on it 2 weeks today and already the swelling is getting worse she has developed water boils on the back of both knees. when first diagnosed it was only in both knees now its in both feet both ankles both knees, both wrist, both hands and both elbows. I never even heard of jra until she got diagnosed and i am soo scared shes in so much pain everyday. > > > > > > Mam you sound just like my my daughter just got diagnosed In jan of this year I know how you feel I never heared of it untill my daughter was dignosed right now my daughter is on Enbrel she just started last friday it was her first injection she is also on the methtrexate as well and the steriod it is very scary everytime my daughter had a flare up which have been 5 already started with just the knees as well they had to put steriod shots in her legs to realive the pain and drain some fluid out everytime they did that she would be walking or able to use that joint again she had the shots in both knees her right knee again elbow and ankel your just like me asking questions and not know what to do are you taking her to a rhematolist? my daughter inflamtion is not under controlled as well thats why they have in so many medicnies > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 Hi I want to give you an advise that helped my daughter A LOT. More than anything the doctors could do. Jackie got JRA at age 3 and had grade 2 damage to knees and ancles when she got diagnosed. Her JRA was three steps ahead of the doctors for the first two years. Meaning, when they thought it could not get worse, it did. Within one year after diagose she had all joints in her whole body attacked incl. the jaw, she had severe joint damage and was in so much pain that I had to carry her in her carseat because it hurt her body so much when I touched it. She had 104 in fever every 12th hour for one year. When we started methotrexate it got even worse and after giving it to her for 3 months , we had to stop because they thought she would die. Her heart beat wa over 220 beats per minut and her body was burning out. She was also on Prednisolone at this time, anything from 20 to 5 mg/day. This was back in 2001. Then, I got the advise to take her off sugar, processed foods, wheat and diary. I also did macrobiotic cooking for 6 months and the benefit from that was that we eat more alkaline foods and less acid foods. Her body was taking calcium from her sceleton to balance the acidity from the foods we had been eating up untill then and her bone density got down to 50 %. Today, she has not had a flare since 2001. The change off her condition took a couple off weeks and then we could tell an improvement that continues up untill today. When you do things like we did it's not an overnight change but a very lasting one. Jackie goes to school 5 days a week, she is growing and has avery healthy general condition. She will probably have to go through surgery for hip and knee replacements in the future, damage that came while she was on prednisolone and Mtx during 2000. But she has a very low activity off JRA today and it's mainly in her small joints: fingers and toes. I would encourage you to take your child off all sodas, candy, cookies etc and replace it with water, friuts (strawberrys are realy high in antioxidants witch helps Jackie a lot, blueberrys (high in antioxidants, pineapple, mango, papaya. ginger (comes as " candy " and is very anti inflamatory), and certains supplements like omega 3 and 6, calcium and Emergen-C (1000 mg of Vitamin c) that you can drink. I wish you good luck if you want to try some off what I suggest. In our case, the whole family did the cange andit gave us a better life and very healthy kids (adults too). mom to Jackie 12 syst.poly JRA since 3 From: deetipton@... Date: Mon, 15 Jun 2009 05:31:17 +0000 Subject: Re: help please I would call her doctor first thing in the morning. Thank God my little girl's didn't progress that badly that quickly, but that also means that I don't have fantastic advice for you. I think that they are used to panicking parents calling up with situations like these. I would explain to them the same way you explained it to us. That definitely deserves a call back. > > > > my daughter just got diagnosed with jra in march its progressing so quick she just started injectable methotrexate (sorry not sure on spelling) shes been on it 2 weeks today and already the swelling is getting worse she has developed water boils on the back of both knees. when first diagnosed it was only in both knees now its in both feet both ankles both knees, both wrist, both hands and both elbows. I never even heard of jra until she got diagnosed and i am soo scared shes in so much pain everyday. > > > > > > Mam you sound just like my my daughter just got diagnosed In jan of this year I know how you feel I never heared of it untill my daughter was dignosed right now my daughter is on Enbrel she just started last friday it was her first injection she is also on the methtrexate as well and the steriod it is very scary everytime my daughter had a flare up which have been 5 already started with just the knees as well they had to put steriod shots in her legs to realive the pain and drain some fluid out everytime they did that she would be walking or able to use that joint again she had the shots in both knees her right knee again elbow and ankel your just like me asking questions and not know what to do are you taking her to a rhematolist? my daughter inflamtion is not under controlled as well thats why they have in so many medicnies > _________________________________________________________________ Windows Live™: Keep your life in sync. http://windowslive.com/explore?ocid=TXT_TAGLM_WL_BR_life_in_synch_062009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 I am so sorry to hear of your daughters struggles. Call your doctor this morning and explain what is happening and tell them you want them to be more aggressive in her treatment. There is so much more out there for treatment of JRA than in the past---many new medications in the last 5-10 years and many more being developed all the time. The first part of diagnosis is the hardest as the doctors try to determine what will work the best. For some it is just one medication and it will be the miracle cure---or at least for remission and will work quickly---for others you have to try many things to find what will work best. Best advice is to call your rheumatologist and let them know that you are concerned because she is worse not better and you would like to add something else. Methotrexate (MTX) is a slow acting medication. It is a great medication, has been around a long time and studied etc so for that it is good. The only problem is that it can take 6 weeks or more before it becomes effective. Some are lucky that it works quicker but for others it takes a minimum of 6 weeks but I know when your child is swollen and in pain, the 6+ weeks is way too long to wait. Call the doc this morning and ask them what else they can do to get her up and moving and doing all that she enjoys. Best of luck to you and please let us know how she is doing and what the doctor recommended. e, mom to 'joe' 22 poly From: arucinski22 <arucinski22@...> Subject: help please Date: Saturday, June 13, 2009, 7:48 PM my daughter just got diagnosed with jra in march its progressing so quick she just started injectable methotrexate (sorry not sure on spelling) shes been on it 2 weeks today and already the swelling is getting worse she has developed water boils on the back of both knees. when first diagnosed it was only in both knees now its in both feet both ankles both knees, both wrist, both hands and both elbows. I never even heard of jra until she got diagnosed and i am soo scared shes in so much pain everyday. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 we called her reumotolgoist they said to take her to her regular doctor see to have them see how bad the boils are and since they said they are not bad enough yet they will not do anything about them except let them grow and hope they pop on there own. its so hard just picking her up or giving her hugs she screams and cries the only joints not affected at this time is her jaw and spine but she has been chewing on everything could that be the medication. From: deetipton@... <deetipton@...> Subject: Re: help please Date: Monday, June 15, 2009, 12:31 AM I would call her doctor first thing in the morning. Thank God my little girl's didn't progress that badly that quickly, but that also means that I don't have fantastic advice for you. I think that they are used to panicking parents calling up with situations like these. I would explain to them the same way you explained it to us. That definitely deserves a call back. > > > > my daughter just got diagnosed with jra in march its progressing so quick she just started injectable methotrexate (sorry not sure on spelling) shes been on it 2 weeks today and already the swelling is getting worse she has developed water boils on the back of both knees. when first diagnosed it was only in both knees now its in both feet both ankles both knees, both wrist, both hands and both elbows. I never even heard of jra until she got diagnosed and i am soo scared shes in so much pain everyday. > > > > > > Mam you sound just like my my daughter just got diagnosed In jan of this year I know how you feel I never heared of it untill my daughter was dignosed right now my daughter is on Enbrel she just started last friday it was her first injection she is also on the methtrexate as well and the steriod it is very scary everytime my daughter had a flare up which have been 5 already started with just the knees as well they had to put steriod shots in her legs to realive the pain and drain some fluid out everytime they did that she would be walking or able to use that joint again she had the shots in both knees her right knee again elbow and ankel your just like me asking questions and not know what to do are you taking her to a rhematolist? my daughter inflamtion is not under controlled as well thats why they have in so many medicnies > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 Oh my! I can't believe they won't drain them! That's about the point where I always wish it was me that this was happening to. If it were me, I'd pop them and drain them myself, but it's too scary and horrible to do that for a child. Especially when it can potentially lead to infection. That poor thing I'm not sure about the chewing either. > > > > > > my daughter just got diagnosed with jra in march its progressing so quick she just started injectable methotrexate (sorry not sure on spelling) shes been on it 2 weeks today and already the swelling is getting worse she has developed water boils on the back of both knees. when first diagnosed it was only in both knees now its in both feet both ankles both knees, both wrist, both hands and both elbows. I never even heard of jra until she got diagnosed and i am soo scared shes in so much pain everyday. > > > > > > > > > > > Mam you sound just like my my daughter just got diagnosed In jan of this year I know how you feel I never heared of it untill my daughter was dignosed right now my daughter is on Enbrel she just started last friday it was her first injection she is also on the methtrexate as well and the steriod it is very scary everytime my daughter had a flare up which have been 5 already started with just the knees as well they had to put steriod shots in her legs to realive the pain and drain some fluid out everytime they did that she would be walking or able to use that joint again she had the shots in both knees her right knee again elbow and ankel your just like me asking questions and not know what to do are you taking her to a rhematolist? my daughter inflamtion is not under controlled as well thats why they have in so many medicnies > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 So sorry to hear of your daughter's struggles. Welcome to the group although we all hate to see another child having this disease. I was wondering - is your daughter on any NSAID's like naproxen, or ibuprofin? While the newest treatment is to start DMARD's quickly, such as the methotrexate, an anti inflammatory can help to relieve inflammation and lessen the pain. As was already posted, the mtx can take awhile to work, so something even short term to get the pain under control would be helpful. Even a short course of steroids might be in order. As to the " boils " , I have not heard of that being a side effect of the meds. Maybe it is, but I've never heard of that one. Please keep an eye on those, and if they spread, get her to the dr. I only suggest it as one of my dd's had a boil which ended up being a skin infection. She needed antibiotics to clear it up. She is not my child with JRA, by the way. So the boils could be something totally seperate. I don't know about the whole let them grow and see if they pop thing. We were told warm compresses to help them pop, but she also had antibiotic cream for them. Did they culture them? I know you are at a real tough spot right now, but it will get better. Just remember, you are your child's advocate, the only one who can speak for her. The drs do not always know everything all the time. Make sure that you are comfortable with the course of treatment they are suggesting and ask them questions. You are right to search for relief for your child. As my son's first rheumy told us, the goal is to get these kids pain free. It does take time, but it can happen. Read all you can about the disease. This list has a lot of experienced parents who can help answer questions and lend a shoulder when you need it. Good luck, and keep us posted, Michele ( 22, spondy) ________________________________ From: [mailto: ] On Behalf Of angela rucinski Sent: Monday, June 15, 2009 6:35 AM Subject: Re: Re: help please we called her reumotolgoist they said to take her to her regular doctor see to have them see how bad the boils are and since they said they are not bad enough yet they will not do anything about them except let them grow and hope they pop on there own. its so hard just picking her up or giving her hugs she screams and cries the only joints not affected at this time is her jaw and spine but she has been chewing on everything could that be the medication. From: deetipton@... <mailto:deetipton%40verizon.net> <deetipton@... <mailto:deetipton%40verizon.net> > Subject: Re: help please <mailto: %40> Date: Monday, June 15, 2009, 12:31 AM I would call her doctor first thing in the morning. Thank God my little girl's didn't progress that badly that quickly, but that also means that I don't have fantastic advice for you. I think that they are used to panicking parents calling up with situations like these. I would explain to them the same way you explained it to us. That definitely deserves a call back. > > > > my daughter just got diagnosed with jra in march its progressing so quick she just started injectable methotrexate (sorry not sure on spelling) shes been on it 2 weeks today and already the swelling is getting worse she has developed water boils on the back of both knees. when first diagnosed it was only in both knees now its in both feet both ankles both knees, both wrist, both hands and both elbows. I never even heard of jra until she got diagnosed and i am soo scared shes in so much pain everyday. > > > > > > Mam you sound just like my my daughter just got diagnosed In jan of this year I know how you feel I never heared of it untill my daughter was dignosed right now my daughter is on Enbrel she just started last friday it was her first injection she is also on the methtrexate as well and the steriod it is very scary everytime my daughter had a flare up which have been 5 already started with just the knees as well they had to put steriod shots in her legs to realive the pain and drain some fluid out everytime they did that she would be walking or able to use that joint again she had the shots in both knees her right knee again elbow and ankel your just like me asking questions and not know what to do are you taking her to a rhematolist? my daughter inflamtion is not under controlled as well thats why they have in so many medicnies > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 Ok, I am absolutely fascinated by your post. I have done quite a bit of research into arthritis diets and came up with nothing concrete. I told my household that we were going to make some HUGE changes, which we have. We haven't gone to the extremes that you have, but I have been leaning much further in that direction. I have to be careful because was very OCD with food at the height of her arthritis. She's still got issues but she's easier to deal with about them now. I had told her that there had to be some diet that could help her- I just didn't know what it was. Your story is incredible, and definitely worth trying. Thanx for sharing! > > > > > > my daughter just got diagnosed with jra in march its progressing so quick she just started injectable methotrexate (sorry not sure on spelling) shes been on it 2 weeks today and already the swelling is getting worse she has developed water boils on the back of both knees. when first diagnosed it was only in both knees now its in both feet both ankles both knees, both wrist, both hands and both elbows. I never even heard of jra until she got diagnosed and i am soo scared shes in so much pain everyday. > > > > > > > > > > > Mam you sound just like my my daughter just got diagnosed In jan of this year I know how you feel I never heared of it untill my daughter was dignosed right now my daughter is on Enbrel she just started last friday it was her first injection she is also on the methtrexate as well and the steriod it is very scary everytime my daughter had a flare up which have been 5 already started with just the knees as well they had to put steriod shots in her legs to realive the pain and drain some fluid out everytime they did that she would be walking or able to use that joint again she had the shots in both knees her right knee again elbow and ankel your just like me asking questions and not know what to do are you taking her to a rhematolist? my daughter inflamtion is not under controlled as well thats why they have in so many medicnies > > > > > > > > > > > > _________________________________________________________________ > Windows Live™: Keep your life in sync. > http://windowslive.com/explore?ocid=TXT_TAGLM_WL_BR_life_in_synch_062009 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 Does your regular doctor know that she is on immune suppressing medications such as methotrexate? Your daughter is going to have a hard time fighting those boils because of her immune system being altered. My 15 year old had a pimple that becase and abcess in a day. We took her to the ER on Saturday night and they had to lance the abcess, drain it, and pack it. We went to the pediatrician this morning and they had to clean it and pack it again because her body is not fighting it off even while on strong antibiotics that she's taking 4 times a day. I think I will be calling the rheumy in the morning to see if they want us to stop any of her immune suppressing drugs while it heals. My point is, if your doctor isn't aware she is on methotrexate, you may want to mention it or take her to the ER and let them know she is immune suppressed. They rushed right in once they realized she had JRA and was on immuno-suppressants. Good luck to you. I hope your daughter gets to feeling better. Hugs, and > > > > > > my daughter just got diagnosed with jra in march its progressing so quick she just started injectable methotrexate (sorry not sure on spelling) shes been on it 2 weeks today and already the swelling is getting worse she has developed water boils on the back of both knees. when first diagnosed it was only in both knees now its in both feet both ankles both knees, both wrist, both hands and both elbows. I never even heard of jra until she got diagnosed and i am soo scared shes in so much pain everyday. > > > > > > > > > > > Mam you sound just like my my daughter just got diagnosed In jan of this year I know how you feel I never heared of it untill my daughter was dignosed right now my daughter is on Enbrel she just started last friday it was her first injection she is also on the methtrexate as well and the steriod it is very scary everytime my daughter had a flare up which have been 5 already started with just the knees as well they had to put steriod shots in her legs to realive the pain and drain some fluid out everytime they did that she would be walking or able to use that joint again she had the shots in both knees her right knee again elbow and ankel your just like me asking questions and not know what to do are you taking her to a rhematolist? my daughter inflamtion is not under controlled as well thats why they have in so many medicnies > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2009 Report Share Posted June 16, 2009 we did tell my daughters doctor she was on methotrexate and even gave them a pamphlet of the medications shes on in case they didnt know what it is. im frustrated i dont know if they just didnt want to help her or not. From: J. Cassady <j_cassady25@...> Subject: Re: help please Date: Monday, June 15, 2009, 10:03 PM Does your regular doctor know that she is on immune suppressing medications such as methotrexate? Your daughter is going to have a hard time fighting those boils because of her immune system being altered. My 15 year old had a pimple that becase and abcess in a day. We took her to the ER on Saturday night and they had to lance the abcess, drain it, and pack it. We went to the pediatrician this morning and they had to clean it and pack it again because her body is not fighting it off even while on strong antibiotics that she's taking 4 times a day. I think I will be calling the rheumy in the morning to see if they want us to stop any of her immune suppressing drugs while it heals. My point is, if your doctor isn't aware she is on methotrexate, you may want to mention it or take her to the ER and let them know she is immune suppressed. They rushed right in once they realized she had JRA and was on immuno-suppressants . Good luck to you. I hope your daughter gets to feeling better. Hugs, and > > > > > > my daughter just got diagnosed with jra in march its progressing so quick she just started injectable methotrexate (sorry not sure on spelling) shes been on it 2 weeks today and already the swelling is getting worse she has developed water boils on the back of both knees. when first diagnosed it was only in both knees now its in both feet both ankles both knees, both wrist, both hands and both elbows. I never even heard of jra until she got diagnosed and i am soo scared shes in so much pain everyday. > > > > > > > > > > > Mam you sound just like my my daughter just got diagnosed In jan of this year I know how you feel I never heared of it untill my daughter was dignosed right now my daughter is on Enbrel she just started last friday it was her first injection she is also on the methtrexate as well and the steriod it is very scary everytime my daughter had a flare up which have been 5 already started with just the knees as well they had to put steriod shots in her legs to realive the pain and drain some fluid out everytime they did that she would be walking or able to use that joint again she had the shots in both knees her right knee again elbow and ankel your just like me asking questions and not know what to do are you taking her to a rhematolist? my daughter inflamtion is not under controlled as well thats why they have in so many medicnies > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2009 Report Share Posted July 1, 2009 www.internationalpharmacy.com - you will find they do Nature Throid and Westhroid nne. These are not designed to be taken sublingually. Please report your experience with Armour to the MHRA Yellow Card Scheme and also to the FDA - otherwise nothing will change - and something need to be changed. Luv - Sheila I have to buy something other than armour now, I have so many symptoms returning even though I have upped my dose by 1/2 grain per day. I am sleeping mid day again, got very clumsy and injuring myself again and last night I woke myself choking twice, all things that went away within weeks of being put onto armour. I have searched the files and looked on the RLC Labs site to try and order Nature Throid but to no avail - so can someone please send me in the right direction so that I can order these and get my life back on track quick pronto. Many thanks Luv nne PS: can these be taken sub lingually as well? Checked by AVG - www.avg.com Version: 8.5.375 / Virus Database: 270.13.0/2209 - Release Date: 06/30/09 11:37:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2009 Report Share Posted July 1, 2009 On Wed, 1 Jul 2009 00:24:33 -0700 (PDT), you wrote: >I have searched the files and looked on the RLC Labs site to try and order Nature Throid but to no avail - so can someone please send me in the right direction so that I can order these and get my life back on track quick pronto. > Greater Pharma worked well for me, they seem a little stronger than " old armour " subjectively, maybe 10% they are available from http://www.1drugstore-online.com/showprice.asp?name=thyroid & bysearch=ok & Go.x=0 & G\ o.y=0 Mine arrived in 10 days though they said it would be 20 to 30 when I ordered. If you have nothing but new Armour I can lend you some of them to try if you want, I have plenty. Nature Thyroid are available from International Pharmacy, do you have their address? Nick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2009 Report Share Posted July 1, 2009 Nick, out of interest does the greater pharm thyroid meds have the same consistency and taste of old armour ????? > > > > Greater Pharma worked well for me, they seem a little stronger than > " old armour " subjectively, maybe 10% > > they are available from > > http://www.1drugstore-online.com/showprice.asp?name=thyroid & bysearch=ok & Go.x=0 & G\ o.y=0 > > Mine arrived in 10 days though they said it would be 20 to 30 when I > ordered. > > If you have nothing but new Armour I can lend you some of them to try > if you want, I have plenty. > > Nature Thyroid are available from International Pharmacy, do you have > their address? > > Nick > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2009 Report Share Posted July 1, 2009 On Wed, 01 Jul 2009 18:55:36 -0000, you wrote: >Nick, out of interest does the greater pharm thyroid meds have the same consistency and taste of old armour ????? Not quite Nick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2009 Report Share Posted October 2, 2009 Hi Jill - it sounds to me as if you need to get the 24 hour salivary adrenal profile test done through Genova Diagnostics www.gdx.uk.net to see where your cortisol and DHEA levels are at four specific times during the day, especially as the Melatonin doesn't appear to be working for you. If you have low adrenal reserve which is not being treated, you are going to have all sorts of problems with your thyroid hormone absorption, if necessary, I would beg, borrow or steal to get the money. If only the NHS realised the necessity of such tests - they would make their patients so well so quickly, but then, that doesn't seem to be the aim of medicine these days. I am a little concerned that you might be treating conditions that you don't even have, and not treating conditions properly that you do have, such as systemic candidiasis and also mercury poisoning, caused through amalgam fillings. We can't tell whether your thyroxine is actually converting to the active hormone T3, and it is the T3 that makes your body and brain function. You say you take 2 Nutri Adrenal Extra - how long is it since you had an increase? It is essential that you increase every two to three weeks until you get onto the dose where your symptoms start to disappear. Any chance you could see Dr Peatfield. I am sure he would recommend that you need a T3 containing product, either synthetic or natural. The link you posted about thyromine does not give the amount of T4 and T3 - so can't help you as to whether this is as good as desiccated thyroid or not. I very much doubt it and would assume this is a supplement only to help boost your thyroid gland. You can get Armour now from www.internationalpharmacy.com as they have 1 grain tablets and 4 and 5 grain tablets back in stock. Luv - Sheila I realy really need to get this sorted, a lot on between the house after flood, my own health and my daughters, my newborn nephew in ICU, and gran and her kindey failure, with no-one can really call on, so have to get on with it. My husband doesn't understand AT ALL, think he thinks I'm a hypochondriac, even though he would deny this. I have ordered Thyromine as can't get hold of most porcine thyroid extract products, and would be grateful if someone could tell me should I be taking this in islotion constantly or phase my Levot gradually..? here is the link for the ingredients. http://www.thyromine.com/ingredients.php I can't afford the blood test etc from geneva. Dr has ordered sex hormone check, LFT and KFT, iron B12, folate, and blood sugar, got blood and urine done today. thanks for listening sorry again for the drone..!! XXX No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.409 / Virus Database: 270.14.0/2406 - Release Date: 09/30/09 18:56:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2009 Report Share Posted October 2, 2009 Hi sheila, thanks for reply...I'm waiting on the NAX to arrive, was going to increase so will do so..just had a look at IP website only got 5 grain left at £80 , can't really do that this month and think would be too much to start on. Once we get stuff sorted with house will be on a better footing finacially hopefully, I know recession hitting everyone hard. Trying to re-mortage but bank being pains over the LTV. Looking at my post from last night gives an indication of how bad I am , spelling and typing errors are atrocious, even though am a partially qualified Fin Advisor and used to be so switched on..to add to the symptoms I listed last night are ones I omitted due to , well everything..!! It was long laboured process typing that post nearly 45 mins. really bad short term memory, very pale skin, thinning eyebrows, and intolerance to too much noise. Once can afford Dr P consultation fees will consider it, will wait to see what Doc says . I think i will ask for a referral to private endo that was on your list but will wait until I can dedicate time to that as meaning 1 hr trips either way to Glasgow with kids in tow as babysitters thin on ground and most consultations held in the evenings. I do wonder though how much these private consultants can do as most of the work for NHS as well and still have to go by RCP guidelines. NAX just arrived so just taken 2 .. Thanks very much Jill XX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2009 Report Share Posted October 2, 2009 Hi Jill, TSH may be low but the T4 has a long way to go- should be around 20! you do need a dose increase, but some of the symptoms you describe are adrenal in origin- see the Files. Hair is unlikely to improve until you can get thyroid/adrenals this sorted, but a selenium shampoo may help with your scalp- you will need a conditioner as this will leave your hair feeling like straw otherwise. do the candida questionnaire too. you will have to be persistant with athlete's foot treatments to clear your nails up as this is fungal too. > Subject: help please> > Hi apologies in advance for the loooonnnng post, so here goes..> > > Right yesterday went to docs to get results of latest bloods,> > TSH 0.04 (0.01 -4.0)> and T4 15.6 (9.0-24.0)> > have been on 75mcg Levothyroxine since May previously 50mcg since March when got formal diagnoses, the dose is being left as it is due to supression. However have become for unwell and told the doctor this. I increased the levo myself 2 weeks ago as felt was needing it, but came off meds as usual 48 hrs before blood taken. Also take Magnesium, zinc,selenium, evening primrose, omega3/6, multivit, 2NAX ( but not for a week as ran out but more on the way), Vit c 1000mg( "") and 1-2 Spatone during the day, and a melatonin but increased to 2 this week as I felt one not sending me to sleep, and 2 collagen at night, and have ordered some Flucanazole.> > Here is my long and comprehensive list of symptoms,> > Scalp- dry and flaky with pus like spots ( seb derm)> Hair- losing it and thinning, dry and wiry, flat and dull and doesn't grow.> Face- very dark circles, dry skin, especially on nose, deep wrinkiles around eyes, labial area,> > > Dr has ordered sex hormone check, LFT and KFT, iron B12, folate, and blood sugar, got blood and urine done today.> > thanks for listening sorry again for the drone..!!> > XXX> > > > > > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2009 Report Share Posted November 18, 2009 > > Hi > > I have just found out that I have to go on a Candida free diet and also gluten free diet..... > > I am really confused over what I can eat.... just wondering if some one can help me with the basic food I can eat... > > Any help will be very gratefully accepted. > +++Hi Kerran. Welcome to our group. When you joined this group you were emailed an article Candida Basics by Bee, which you should have read. It is a short version of my long article How to Successfully Overcome Candida which is posted on my website: http://www.healingnaturallybybee.com/articles/intro2.php You don't just go on a candida-free and gluten-free diet - there's more to it than that, so please read the article above so you understand about candida and what you need to do and why. Also ensure you follow this article when starting on this program - Curing Candida, How to Get Started: http://www.healingnaturallybybee.com/articles/intro1.php Here's the food list: http://www.healingnaturallybybee.com/articles/foodslist.php Here's the supplements list and details: http://www.healingnaturallybybee.com/articles/supp1.php Remember that Candida is not cured by " killing it off. " It just doesn't work that way. Candida is only cured by building up the immune system, which is done by: 1) Consuming " proper nutrients " (diet plus supplements), 2) Eliminating toxins and foods that feed candida (they also feed bacteria and cancer), 3) Eliminating damaging foods, and 4) Eliminating toxins in general. The best in health, Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2010 Report Share Posted January 27, 2010 You need to get him tested to see if Pete has antibodies to his thyroid nne - this could affect the TSH but the changes are not too drastic. Also, his FT4 and FT3 are fine - but then, we know what 'fine' results can mean in many instances. What you need to get his GP to check are his Ferritin levels, vitamin B12, vitamin D3, folate, magnesium, zinc and copper. If any of these are low he needs to supplement them immediately. Also, have you considered getting the 24 hour salivary adrenal profile done through Genova, as he could have low adrenal reserve - with similar symptoms to hypothyroidism. We now get discounts for members of TPA-UK. Have a look in the FILES section under 'Discounts'. He might also wish to answer the adrenal, candida and magnesium questionnaires in the @Medical Questionnaires' Folder - to see if you can get a hint of what might be wrong from there. Luv - Sheila My husband was suffering extreme fatigue back in 2008 so he went to the GP, his TSH was tested and it came in at 1.8 - a few months later it was 1.9 so we thought we would keep a check. Recently he went to the GP because he really is suffering with severe fatigue and his TSH was 2.1 - aha, it is rising we need to get more tests - went back to GP and requested that he was sent for FT4 and FT3 to see what was happening. 1 month after 2.1 result his TSH came in at 1.42 FT4 at 13.2 and FT3 5.6 - I do firmly believe that he has a thyroid problem but just don't know where to look next and would appreciate any help that anyone can give - Poor man is falling asleep at the drop of a hat, does have the hypo crash somewhere between 12pm and 3pm. The only addition to his supplements that we made in that time was B vits and magnesium - would this be enough to change those TSH levels so drastically, I didn't think so. Sincere thanks for any help you may be able to send my way. nne No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.432 / Virus Database: 271.1.1/2645 - Release Date: 01/26/10 19:36:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2010 Report Share Posted January 27, 2010 Thanks for the reply Sheila, he had his antibodies tested and they seem to be pretty normal. I did think that his FT4 should be in the upper third of the levels where his is in the lower third, is this not correct? His FT3 I was sure was fine. I didn't realise that TSH would fluctuate so much though, Dr P said that with levels of 1.9 he should have been diagnosed. A private lab said with levels of 2.1 most dr's would have diagnosed - our surgery seems to be one of the only ones around that don't diagnose until your TSH levels go up as high as mine, from 8 in 2000 to 13 in 2005 when I finally got a diagnosis. I don't think they know anything other than bog standard hypoT either, if you have hashi's then you are normal, there is no hypoT at all. I had higher than normal antibodies but that was perfectly normal. I want him to go armed with whatever information will help get to the bottom of it - it he is tending towards hypoT I want to give him all that he needs so that he doesn't necessarily need to go onto meds. Luv nne He had quite a few tests recently I will ask him to give me the print out so that I can check all that was done and check it off against your list. > > You need to get him tested to see if Pete has antibodies to his thyroid > nne - this could affect the TSH but the changes are not too drastic. > Also, his FT4 and FT3 are fine - but then, we know what 'fine' results can Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 FT4 should be in the upper third of the reference range for those in thyroid hormone replacement - and just above the middle of the reference range for those not on treatment. Not many doctors would give a diagnosis in the UK with a TSH of Pet's level. In Germany and Belgium the reference range is 0.3 to 2.5 with a recommendation it be dropped even further to 0.3 to 1.5. In the USA, the reference range is 0.3 to 3.0. In the UK, the ref. range is 0.5 to 10.0 (according to the RCP(London) and the BTA. However, most doctors would diagnose if the TSH was above 5.0 and was accompanied by symptoms. Luv - Sheila Thanks for the reply Sheila, he had his antibodies tested and they seem to be pretty normal. I did think that his FT4 should be in the upper third of the levels where his is in the lower third, is this not correct? His FT3 I was sure was fine. I didn't realise that TSH would fluctuate so much though, Dr P said that with levels of 1.9 he should have been diagnosed. A private lab said with levels of 2.1 most dr's would have diagnosed - our surgery seems to be one of the only ones around that don't diagnose until your TSH levels go up as high as mine, from 8 in 2000 to 13 in 2005 when I finally got a diagnosis. I don't think they know anything other than bog standard hypoT either, if you have hashi's then you are normal, there is no hypoT at all. I had higher than normal antibodies but that was perfectly normal. I want him to go armed with whatever information will help get to the bottom of it - it he is tending towards hypoT I want to give him all that he needs so that he doesn't necessarily need to go onto meds. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 There seems to be a new reference range for FT4 now Sheila according to his latest test it is now 11.5 - 22.7 and with a result of 13.2 I would say his is pretty low and definitely not near the middle of the range let alone above it. He put his other results away and cannot remember where at the moment but I will find them to check what he had done as I do know that his ferratin/iron (are these the same test) was on the low side and I asked what the GP had given him and it was nothing. He has no outter third of eyebrow, he is very tired and has bouts of depression for absolutely no apparent reason - there is something wrong and we need to find out what exactly it is if not the thyroid. Thanks for your response, most appreciated. Luv nne > > FT4 should be in the upper third of the reference range for those in thyroid > hormone replacement - and just above the middle of the reference range for > those not on treatment. Not many doctors would give a diagnosis in the UK > with a TSH of Pet's level. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2010 Report Share Posted April 26, 2010 Thank you for your reply Fiona. Im going to arrange an appointment as soon as I can, will try another doctor in the surgery (nearly seen every one now). Is there any reference in any medical journals etc that anyone knows off that I can show GP to show him that they should be aiming to get my TSH much lower than 3.66 and my T4 in the higher bracket? ne > > > Im currently on 75mcg Levothyroxine. I do feel better than I did but still get symptoms. Just phoned GP's for latest test results: > > > > TSH 3.66 > > T4 12.9 > > Magnesium 0.87 (forgot to ask for reference range) > > Notes on test say all normal, no further action. > > > > Ferritin was tested few months back and was 15 but GP said to just increase iron rich food!!!! > > >> > Fiona > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2010 Report Share Posted May 31, 2010 Hi , That's kind of a tough question to answer. Your doctor would be the best one to ask re the diabetes, etc. The cochlear implant has given many of us a new life with restored hearing. It doesn't provide perfect hearing but when your hearing is bad enough to consider you eligible for an implant it's likely to benefit you. It provided me with the ability to once again converse with other people, hear birds, etc. Virg > Dear Friends > > I had an hearing test on the 22nd may in manchester which is in the uk, > the hearing is down in the right ear and I am on the boarderline for a > cochlear implant, also I have diabetes and high blood prshure, kidney > problems and problems with my heart, is this going to put me of having a > cochlear implant done what are the prose and cons of the cochlear implant > please, I hope some one can answer my questions. > > all the best from sean waiting in the uk. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2010 Report Share Posted May 31, 2010 Hello , I think almost everyone who has a CI would tell you to accept an offer of implantation if you get one. For most people,it provides an improvement in their ability to hear, although the actual degree of benefit is not predictable.Since you obviously have a hearing memory, your learning curve ought to be shorter than someone who has always been deaf. Given your described medical conditions, there could obviously be issues with the implant surgery, which would be investigated if an offer is made. I am also in the UK, and you might also benefit from joining the group CIUG 2004, which has an almost exclusively UK based CI user membership. One important point: when your hearing is tested, do not not guess or improvise - if you don't hear it, say so: guessing can give a false high result you do not want. Hope to see you perhaps on CIUG2004. > Quote Link to comment Share on other sites More sharing options...
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