Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Jan, I don't have experience with Social Security disability, but have heard plenty about the necessity of fighting them to get your due. I seriously doubt that with a history like that you are not qualified, but you may need help from your doctor and a good attorney. No need to apologize for the length of your story. They always take longer to write than to read. I've lived with scoliosis my whole life, which wasn't a picnic, but I think it must have been even worse for you to go from a carefree, athletic life to being a surgical patient, and stuck in a cast just at the age when girls are most vulnerable socially. I'm sorry you're having such a hard time. I still do a lot of things, but, related to the back or not, I gave up my beloved career as a piano teacher due to chronic tendonitis. I actually 2-finger type all my posts, which is nuts since I can touch-type quite well, but my hands can't take it. Hang in there and know you are not alone. Sharon in southern New Hampshire :^) Congenital scoliosis w/ spina bifida and other vertebral anomalies 1971 fusion T5 to L4 w/ single Harrington rod Flatback, congenital thoracolumbar kyphosis, L5-S1 degeneration, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Jan, Just wanted to come in with the others & tell you we all understand. I too had a double curve and at 14yrs. old in 1969 I had Harrington rods. Then followed the 9 months in the plaster body cast -3 months totally bedridden, next 3 months stand up or lie down (not an easy feat!), Last 3 months some sitting but as the cast was up into my hairline & under my ears, etc that wasn't practical for long periods. At 16 they removed the rods. About 15 yrs ago I learned that they usually leave them now as they learned that it's more dangerous to take them out. As much fusion as I have the lower curve has gradually become a 40deg curve and I don't know about the upper curve as it hasn't been x-rayed in 10yrs. or more. Now that I'm at the top of the hill I notice more pain, etc and just finished another round of PT. I don't know how SSI could deny you but I'd fight. Hang in there & again, WELCOME. Joyce (Atlanta, GA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 Jan, I'm sorry things are so bad. You definitely need to fight the SS rejection. There is a group for SI joints and there is a section within the archives of that group on getting SS. It seemed like valueable info. Have you been to a pain specialist to see if the pain is strictly from your SI joint? I get steroid injections in mine (under floroscopy to make sure they get it in the joint space) and the fact that it brings temporary relief indicates that is where the pain is coming from, but regardless, pain specialists are as much diagnosticians for discovering the source of pain as they are for figuring out how to relieve it. If you don't mind me asking, who was your surgoen? Could he recommend someone. Now that they took the screw out, is the joint still fused without it? Judy Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2003 Report Share Posted May 22, 2003 Jan, I'm glad you found this group, You've certainly been through enough lately. And, yes, you can be on as many lists as you like. One caveat, if I may...be careful about information on SI joint manipulation in the event your SI joint is unfused. Having a fusion to the sacrum makes manipulation something that should be approached cautiously. I'm also glad you see the pain specialist regularly. That may be your best help. About the tingling, yes, anything involving your arms would be from above your fusion and it's very common to have degeneration above the fusion. If it's any consolation, the general population seems to have a lot of problems with this as well. As far as your movement problems, if your SI joint is fused, your movement will be significantly restricted, and you should take great care not to over extend yourself. Why don't you do yourself a favor and give up the pantyhose? That must be exhausting! I gave up putting on pantyhose years ago, and haven't missed it. If I have to wear a skirt, I wear a long one and use kneelets. But I basically just wear dress pants to work. Jan, I can't stress enough to you that you should have a desk job or something that involves as little movement as possible. Maybe the SS office can find you an appropriate job while you're contesting their decision. To tell you a little about myself, I'm Harrington fused to L5 and am putting off extending the fusion to the sacrum (and possible through the SI joint). I still work full time but am planning on state retirement for disability in two years. I'm single, and that won't be enough income, so I'm thinking of working a job that is maybe three days a week, but I haven't even begun to think about what that job might be. I have a master's in public admin, so maybe I'll go back to work for the fed. government (since I live in the DC area). On the other hand, I've just begun to check into what I would get if my retirement income is supplemented by SS. If need be, I'll hire an attorney. So, you have a support group here and let me be one of many to welcome you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2005 Report Share Posted April 16, 2005 Becky, Thanks for telling us your story. It helps to hear from others. I'm sorry you had such a reaction. I took Allopurinol when I did Chlorambucil. I've been in remission since July of last year. Well, not a full remission. My lymph nodes continue to grow. You should go into a full remission. Take care, Lori My story I read and learned a lot from this group, so thought I'd share my story, so far. I was diagnosed with CLL 11/3/04 and was started on Allopurinol for the gout symptoms that would result from chemo. I started Fludara the week of 11/8. I developed a swollen gland infection around the end of November, but it didn't stop me from doing the fludara again the week of 12/3. A couple of days after that, I developed a really bad rash; hives and then scabs all over my body. They gave me 5 days worth of prednisolone, but that didn't work. My Onc sent me to a dermatologist, and after taking the meds he prescribed me, I realized from the timing of the pills and my reactions, I was allergic to the Allopurinol. So I quit taking that and things started getting better. Also had a hugh water retention problem during that time, so was on water pills and potassium for a few days. All of this allergic reaction posponed any chemo, and I also became anemic. I started getting aranesp shots for this. Starting 1/31/05, I went on 8 weeks of Rituxan. My lymph nodes were shrinking as hoped. I see my Onc this coming Monday, 4/18, to see where we go from here. I think he wants me to go on Rituxan maintenance starting this fall, but from what I've read, the jury's out on this one, so I'm not too sure what to do. While taking the Rituxan/Tylenol/benadryl/prednisolone the first time, it took about 7.5 hours to do. I started having a bit of a reaction around 200m, so they slowed it back down, and then I was okay. The weeks after that, the whole routine took about 2-3 hours. Because I only got the prednisolone once a week, I didn't swell up or gain weight. So I guess I'll be giving you all an update Monday evening on where I'm at. Becky ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 Hi Barb, I am sure you will hear from others who have similar pains. Perhaps might give you possible doctor names to consider in your local area. You said your last consult was with the " spinal cord guy " ...does that mean you have consulted a neurologist and not a orthopedic surgeon specializing in scoliosis,adult spinal deformity and aging spine? I think that might be what you are looking for. I am sure if you have read back on this site, and others, you have seen there is a lot of diveristy of opinion about rods coming out.(In fact I think posted a paper on her site but I couldn't open it!) I believe you will have to find your way there by talking to people and doctors you trust who have done/had the procedure. I have read everything from the fact that it was relatively easy, straighforward surgery to much more complicated than anticipated...and caused problems down the road. I know in my surgeons case he tends to leave the old rods in if he can...feeling that if they are not causing problems (which in your case they may be) it is better to leave " well enough " alone. Reading my surgical report from my revision, just to expose the bottom 3 " which needed to come off for the new hardware/osteotomy...it took a lot of chipping out old boney overgrowth. I think that can be common with rods that have been in since the '70's, as mine had. I think it is a fair concern that you would like to know what the future holds...and have some concerns. They key is getting to a doctor that has seen enough of us " Harrington " folks to give you an idea of what you can expect. It doesn't sound to me like you have found that person yet. Advising someone to come back once they are in a crisis situation (which bowel/bladder problems can be) seems a little " cavalier " to me. But hey, what do I know, I am just a patient like you! I will say you should keep asking questions til you are at the bottom of it, and satisified. Flatback and/or HARMS, if you have it, won't just go away on their own. Please keep us posted on your search, and ask any questions...There are loads of members here who have a ton of experience going through this. Best of luck in your search. Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 My first surgery was done by Dr. Polly, who is now at the Twin Cities Spine Center, and I can't say enough good things about him - I'd recommend him for a follow up visit! Carolyn Quoting luzestela99 <joeljy@...>: > <html><body> > > > <tt> > I had a spinal fusion with two harrington rods in 1972 at > Gillette<BR> > Hospital in st. , MN. Dr. Winter did the surgery. & nbsp; I > have<BR> > had no & quot;Major & quot; problems, except that I have severe pain in > my neck at<BR> > all times. I was told in about 1991 that I have degernerative discs > in<BR> > C3-4 and C5-6, right above where the second rod is. & nbsp; I am now 48 > and<BR> > quite functional, active, etc. I do water aerobics. I take > Ibuprofen<BR> > for the pain. In 1991 the doctor told me to come back if I was > & quot;having<BR> > bowel and bladder problems & quot; from my neck pain. This was the > spinal<BR> > cord doctor.<BR> > <BR> > Do I have other options? Shouls & nbsp; have my top rod removed. i have > pain<BR> > nowhere else....I fear getting older and it getting worse.... > Any<BR> > suggestions welcome. I live in st. , MN..<BR> > <BR> > Barb H.<BR> > <BR> > <BR> > <BR> > <BR> > </tt> > > <br><br> > <tt> > Support for scoliosis-surgery veterans with Harrington Rod > Malalignment Syndrome. Not medical advice. Group does not control ads > or endorse any advertised products.</tt> > <br><br> > > > > <!-- |**|begin egp html banner|**| --> > > <br> > <tt><hr width= " 500 " > > <b> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 Hi Barb... You're in a great place in terms of having access to excellent surgeons. Here's some to check out: Glenn Buttermann - Stillwater and, just about any of the doctors at Twin Cities Spine Center. Here are a few whose names I see on research papers: Francis Denis http://www.tcspine.com/physician.asp?id=2 Lonstein http://www.tcspine.com/physician.asp?id=4 ph Perra http://www.tcspine.com/physician.asp?id=6 Ensor Transfeldt http://www.tcspine.com/physician.asp?id=9 Regards, > I had a spinal fusion with two harrington rods in 1972 at Gillette > Hospital in st. , MN. Dr. Winter did the surgery. I have > had no " Major " problems, except that I have severe pain in my neck at > all times. I was told in about 1991 that I have degernerative discs in > C3-4 and C5-6, right above where the second rod is. I am now 48 and > quite functional, active, etc. I do water aerobics. I take Ibuprofen > for the pain. In 1991 the doctor told me to come back if I was " having > bowel and bladder problems " from my neck pain. This was the spinal > cord doctor. > > Do I have other options? Shouls have my top rod removed. i have pain > nowhere else....I fear getting older and it getting worse.... Any > suggestions welcome. I live in st. , MN.. > > Barb H. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 Hi Barb, I live in Fargo, ND and I go to the Twin Cities Spine Center in Minneapolis. I had my revision surgery done there and then a surgery in November to remove the revision surgery hardware. I have been very happy with them. If you are looking for another opinion that would be a great place to start. I saw Dr. ph Perra. > I had a spinal fusion with two harrington rods in 1972 at Gillette > Hospital in st. , MN. Dr. Winter did the surgery. I have > had no " Major " problems, except that I have severe pain in my neck at > all times. I was told in about 1991 that I have degernerative discs in > C3-4 and C5-6, right above where the second rod is. I am now 48 and > quite functional, active, etc. I do water aerobics. I take Ibuprofen > for the pain. In 1991 the doctor told me to come back if I was " having > bowel and bladder problems " from my neck pain. This was the spinal > cord doctor. > > Do I have other options? Shouls have my top rod removed. i have pain > nowhere else....I fear getting older and it getting worse.... Any > suggestions welcome. I live in st. , MN.. > > Barb H. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2006 Report Share Posted April 21, 2006 I don't know about anything else, but I would advise giving Singulair a shot if you haven't - it can retard polyp growth. I know nothing about alternative methods, but what I've discovered, when my nose is just so irritatingly stuffed and I can't take it, is that an hour+ walk tends to relieve it, at least for a little bit. Sympathetic effect, obviously, but it *does* help. As for the headaches, I dunno. It's a problem I share. I take imitrex for migraines (huge asthma side effects for me, though) and for everything else, I endure. Sometimes, if I can force myself to do yoga (and it can be excruciatingly painful in the midst of a headache - worse than sitting still), the headaches will lessen and be tolerable by the end of an hour or so. That sometimes averts a migraine. Good luck. I hope others have better suggestions. I would advise probably not bothering with the low-salicylate diet. It's a pain and I think it's only worked for, like, one of us. Oh, and I'm sure you'll see the whole thing about irrigation. It didn't work for me, but it seems like others are doing well with it. > > I've had samter's for about 25 years now and have suffered with daily > headaches and fatigue. I've had numerous surgeries to remove polyps > but they grow back almost immediately. I used rhinocort and other > preventive medications but the polyps continued to grow so about 6 > months ago I stopped using them and switched over to Sinufix spray > from the health food store. It was a big step for me to get off of the > sinus medication. I constantly get sinus infections probably about > every 2 months and have to go on antibiotics. My doctor does not like > to prescribe them but it is the only thing that helps me on a > temporary basis. I've become so discourged with this disease. I do > take Flovent daily to control the asthma. I also take darvocet for > the headaches since I can't take aspirin products. Has anyone tried > alternative methods to treat samters? I would appreciate some > feedback. I'm so happy I found this group. > > Thanks. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2010 Report Share Posted September 26, 2010 Hi, i know this is late, but I have had no sense of smell for 30 years. I heard of a Kenalog shot and that is what I am doing now. I get it every 6 months and it has helped and I am able to smell things now. > > > > I've had samter's for about 25 years now and have suffered with > daily > > headaches and fatigue. I've had numerous surgeries to remove polyps > > but they grow back almost immediately. I used rhinocort and other > > preventive medications but the polyps continued to grow so about 6 > > months ago I stopped using them and switched over to Sinufix spray > > from the health food store. It was a big step for me to get off of > the > > sinus medication. I constantly get sinus infections probably about > > every 2 months and have to go on antibiotics. My doctor does not > like > > to prescribe them but it is the only thing that helps me on a > > temporary basis. I've become so discourged with this disease. I do > > take Flovent daily to control the asthma. I also take darvocet for > > the headaches since I can't take aspirin products. Has anyone tried > > alternative methods to treat samters? I would appreciate some > > feedback. I'm so happy I found this group. > > > > Thanks. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2010 Report Share Posted September 26, 2010 my ent is giving me a nasal steriod/antibiotic nebulizer-headaches at first but they have really subsided-ive been on that about a month can breathe through my nose with mouth closed...asthma somewhat controlled i wheeze sometimes too my stomach is what's bothering me over these past couple of weeks do you ever have stomach aches ? From: cd1962 <rosa1115@...>Subject: Re: my storysamters Date: Sunday, September 26, 2010, 5:06 PM Hi, i know this is late, but I have had no sense of smell for 30 years. I heard of a Kenalog shot and that is what I am doing now. I get it every 6 months and it has helped and I am able to smell things now. > >> > I've had samter's for about 25 years now and have suffered with > daily> > headaches and fatigue. I've had numerous surgeries to remove polyps> > but they grow back almost immediately. I used rhinocort and other> > preventive medications but the polyps continued to grow so about 6> > months ago I stopped using them and switched over to Sinufix spray> > from the health food store. It was a big step for me to get off of > the> > sinus medication. I constantly get sinus infections probably about> > every 2 months and have to go on antibiotics. My doctor does not > like> > to prescribe them but it is the only thing that helps me on a> > temporary basis. I've become so discourged with this disease. I do> > take Flovent daily to control the asthma. I also take darvocet for> > the headaches since I can't take aspirin products. Has anyone tried> > alternative methods to treat samters? I would appreciate some> > feedback. I'm so happy I found this group.> > > > Thanks.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2010 Report Share Posted September 26, 2010 It is very hard for me to really know what you have, but I think a lot of us have had some different stomach issues indirectly related. I think you should contact your doctor. Hope you feel better. Sent on the Sprint® Now Network from my BlackBerry®From: Ogden Leonard <aio_cps@...>Sender: samters Date: Sun, 26 Sep 2010 15:20:29 -0700 (PDT)<samters >Reply samters Subject: Re: Re: my story my ent is giving me a nasal steriod/antibiotic nebulizer-headaches at first but they have really subsided-ive been on that about a monthcan breathe through my nose with mouth closed...asthma somewhat controlled i wheeze sometimes too my stomach is what's bothering me over these past couple of weeksdo you ever have stomach aches ?From: cd1962 <rosa1115@...>Subject: Re: my storysamters Date: Sunday, September 26, 2010, 5:06 PM Hi, i know this is late, but I have had no sense of smell for 30 years. I heard of a Kenalog shot and that is what I am doing now. I get it every 6 months and it has helped and I am able to smell things now. > >> > I've had samter's for about 25 years now and have suffered with > daily> > headaches and fatigue. I've had numerous surgeries to remove polyps> > but they grow back almost immediately. I used rhinocort and other> > preventive medications but the polyps continued to grow so about 6> > months ago I stopped using them and switched over to Sinufix spray> > from the health food store. It was a big step for me to get off of > the> > sinus medication. I constantly get sinus infections probably about> > every 2 months and have to go on antibiotics. My doctor does not > like> > to prescribe them but it is the only thing that helps me on a> > temporary basis. I've become so discourged with this disease.I do> > take Flovent daily to control the asthma. I also take darvocet for> > the headaches since I can't take aspirin products. Has anyone tried> > alternative methods to treat samters? I would appreciate some> > feedback. I'm so happy I found this group.> > > > Thanks.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2010 Report Share Posted September 26, 2010 agreed thank you From: cd1962 <rosa1115@...>Subject: Re: my storysamters Date: Sunday, September 26, 2010, 5:06 PM Hi, i know this is late, but I have had no sense of smell for 30 years. I heard of a Kenalog shot and that is what I am doing now. I get it every 6 months and it has helped and I am able to smell things now. > >> > I've had samter's for about 25 years now and have suffered with > daily> > headaches and fatigue. I've had numerous surgeries to remove polyps> > but they grow back almost immediately. I used rhinocort and other> > preventive medications but the polyps continued to grow so about 6> > months ago I stopped using them and switched over to Sinufix spray> > from the health food store. It was a big step for me to get off of > the> > sinus medication. I constantly get sinus infections probably about> > every 2 months and have to go on antibiotics. My doctor does not > like> > to prescribe them but it is the only thing that helps me on a> > temporary basis. I've become so discourged with this disease. I do> > take Flovent daily to control the asthma. I also take darvocet for> > the headaches since I can't take aspirin products. Has anyone tried> > alternative methods to treat samters? I would appreciate some> > feedback. I'm so happy I found this group.> > > > Thanks.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2011 Report Share Posted March 13, 2011 Hi , OMG - I thought I had gone through the mill (like us all) but your case seems horrific too. Sheila will be able to advise better than me - but I had similar issues and eventually went on cortisol to support my adrenals that were virtually non existent because of the 15 odd years of delay that caused my health to deteriorate even further. I had horrendous skin issues too as the immune system (via the adrenal glands) just collapsed. Now you are at this site you will get the help you need. Good luck Best wishes Mandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2011 Report Share Posted March 13, 2011 Hello and welcome to our forum where I sincerely hope you at last get the help and support you deserve and need so badly. I am going to jump straight in here and ask you to get an up to date thyroid function test which should include TSH, free T4 and free T3. it doesn't matter about getting your antibodies checked again, we only request this test when a person has not shown any antibodies. Once you have them, they remain until they have done the job they set out to do, and that is to destroy your thyroid tissue completely. You should also request that your doctor does the following blood tests to see where your levels of ferritin, vitamin B12, vitamin D3, magnesium, folate copper and zinc lie. We ask for these because if any of them are low in the reference range, no amount of thyroid hormone is able to be fully utilised at cellular level until whatever mineral/vitamin is low, is properly supplemented. You also need to get tested to see whether you might be suffering with low adrenal reserve or/and systemic candidiasis. Again, if you are suffering with either of these (and I get you are suffering with one) the thyroid hormone can't get into the cells in your body and brain to make them function as they should. Go to the FILES section which is accessible from the home page of this forum here thyroid treatment and click on FILES in the Menu. On the Page that opens, scroll down (alphabetically) to the FILE entitled 'Medical Questionnaires' and complete all the questions you see there in the Adrenal Questionnaire, the Candida Questionnaire and the Magnesium Questionnaire and see how you score. Then go the FOLDER 'Adrenals' and in the list there, do the Adrenal Home Testing and let us know what happens. You can get the 24 hour salivary adrenal profile done to see where your cortisol and DHEA levels lie at four specific times during the day. This is important. The NHS only check your cortisol level if they suspect that you are suffering with 's Disease (too little or no cortisol secretion) or Cushing's Syndrome (too high a level of cortisol secretion) because they don't recognise any shades of grey in-between - so we have to look after this part of our health ourselves. If it is found you have low adrenal reserve, we will tell you how to treat it and if it is found you are suffering with Candida, we have lots of information about treating this too. If you need to get tested privately, in our FILES section yet again, we have one FOLDER entitled 'Discounts on Tests and Supplements' - open the one entitled 'Genova Diagnostics' and follow the instructions there to claim your discount. You have to tell Genova that Thyroid Patient Advocacy is your practitioner but the results will be sent direct to you. We do find that for those suffering symptoms of hypothyroidism that once they have been forced by their 'uneducated in thyroid' doctor to take their thyroid health into their own hands, that they get better themselves where the NHS has left them suffering so unnecessarily for years and years. We are here to help you if you decide to go down this road. You need to eliminate other possible associated conditions that is getting in the way of you regaining your normal health and first, I would go to our web site www.tpa-uk.org.uk and click on 'Hypothyroidism' and then click on 'Associated Conditions' in the drop down Menu and read all you can about these. When you go for your next thyroid function test, make absolutely sure that you do not take any Erfa Thyroid for at least 24 hours before you have your blood drawn, because the T3 has a very short half life and peaks in the blood a couple to four hours after you have taken it - and your GP will believe you are taking too much and going hyPERThyroid and try to get you back onto thyroxine. You can take your Erfa straight after you have had your blood drawn. You should treat according to how you feel, but in your case, I think you must look into the possibility of adrenal fatigue and low mineral/vitamins that need sorting first as these might be stopping your Erfa from working. If you can get these results to us (together with the reference range for each test done) and post them here, we can really start to give you the help you so desperately need. You can buy synthetic T4 and T3, plus natural desiccated thyroid extract (i.e Armour Thyroid, Erfa Thyroid', Nature Throid, Westhroid, Thyroid-s and 'Thiroyd' from Internet Pharmacies without prescription. We have a list of such pharmacies in our FILES section. Scroll down to 'Internet Pharmacies' Folder and you will find all the information you need there. Luv - Sheila I added ERFA in with the thyroxine and i am feeling better and i was on 7 grains of ERFA with 175 mcg thyroxine and last month it was suggested that i cut my dose. I removed half of a 25mcg of thyroxine with very bad results:- hair loss, very bad belly swelling,skin bad, puffy eyes and lots more. So it would seem to me that i should be increasing instead of reducing as i have no signs of overactivity and indeed feel worse. I am going for a test on the 28th March and will post results. I was hoping for some advice. I was also wondering if i can get ERFA and thyroxine without a prescription. This is a passed result with antibodies 22/05/2008:- luv Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2011 Report Share Posted March 13, 2011 Sounds like you need to treat the Candida . I too had a severe disability in trying to get out of bed, getting out of my armchair from sitting, getting out of the car too. I had to stand for quite a quite until my back had 'settled' and the pain started to lessen a little before even attempting to walk. This was because there was no T3 getting into my cells and causing my muscles to literally go into spasm. We'll get you there . Luv - Sheila Dear Sheila thank you for the prompt response i immediately burst into tears at the thought there maybe some hope for me.I have looked at all these things but think i just did not know where to start (properly because i know i am not thinking straight). Amongst the many symptoms i forgot to mention is that i am very stiff and can hardly walk from a sitting position, swollen hands but most importantly i was diagnosed with type two diabetes in 2005 and after a quick scan of your list the one thing that jumped out is that in the past couple of years i have had a very bad sugar graving and can't stay away from the chocs and sweets. luv Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2011 Report Share Posted July 1, 2011 I find this site most helpful and appreciate everyone's posts. After about 2 years of constant stuffiness, PND, intermittent asthma, bouts with hives and after one surgery to remove polyps which returned, on combos of Singulair, Nasocort, Advair, Budesonide and Astepro with little success, my allergist suggested possibility of Samter's. He sent me to another Dr. who does desensitization. That Dr. put me on Zyflo CR, and I remained on Advair, Nasocort, Claritin and Budesonide (dripped directly into nostrils while laying with head over edge of the bed), I finally started to improve. I began to improve quickly and this Dr. is of the opinion (and I agree) that if we are able to manage the condition with meds, we should hold of on desens. After about 6 months I am off meds for asthma altogether and take daily Zyflo CR, 1 Claritin, Nasocort (1 spray each nostril in am and 1 in pm), and Budesonide (once or twice a day). I also do a nasal rinse with a Neti pot in the morning with about a 1/2 capful of hydrogen peroxide, a 1/4 tsp of baking soda and 1/4 teaspoon of salt. My ENT says she sees remainder of polyps but they are greatly reduced, I can breathe, the PND is virtually gone. I was lucky and didn't loose my SOS. My quality of life is hugely improved. I have tried to keep track of foods that seem to trigger and avoid them. Sadly this includes wine, beer and chocolate, but I feel so much better, I don't really miss them. I am also trying to eat generally better, leaning toward an anti-inflammatory diet. I have had a couple of polyp flare ups, usually when I have to travel. I have been taking a day or 2 of Prednisone to reduce them along with my daily meds, and I have been able to knock them back. I agree with other posters that solutions seem to unique to each individual. In my case, trial and error and keeping track of triggers have played a big part in my getting to the point where I am. I only hope it continues. I am fortunate to have health ins (at least for the time being) to cover much of the cost of the Zyflo which is not cheap. Still, I am weighing the options of maybe being on Zyflo for the rest of my life (I am 55) or trying desens and being on aspirin for the rest of my life. At least it is cheaper. Since I seem to be doing well on my current meds, I hate to rock the boat and risk return of polyps. Thanks again to all who post. The information here is invaluable and greatly appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2011 Report Share Posted July 3, 2011 Very helpful story Sent from my iPhoneOn Jul 1, 2011, at 8:20 PM, "jennifer" <jbodenw@...> wrote: I find this site most helpful and appreciate everyone's posts. After about 2 years of constant stuffiness, PND, intermittent asthma, bouts with hives and after one surgery to remove polyps which returned, on combos of Singulair, Nasocort, Advair, Budesonide and Astepro with little success, my allergist suggested possibility of Samter's. He sent me to another Dr. who does desensitization. That Dr. put me on Zyflo CR, and I remained on Advair, Nasocort, Claritin and Budesonide (dripped directly into nostrils while laying with head over edge of the bed), I finally started to improve. I began to improve quickly and this Dr. is of the opinion (and I agree) that if we are able to manage the condition with meds, we should hold of on desens. After about 6 months I am off meds for asthma altogether and take daily Zyflo CR, 1 Claritin, Nasocort (1 spray each nostril in am and 1 in pm), and Budesonide (once or twice a day). I also do a nasal rinse with a Neti pot in the morning with about a 1/2 capful of hydrogen peroxide, a 1/4 tsp of baking soda and 1/4 teaspoon of salt. My ENT says she sees remainder of polyps but they are greatly reduced, I can breathe, the PND is virtually gone. I was lucky and didn't loose my SOS. My quality of life is hugely improved. I have tried to keep track of foods that seem to trigger and avoid them. Sadly this includes wine, beer and chocolate, but I feel so much better, I don't really miss them. I am also trying to eat generally better, leaning toward an anti-inflammatory diet. I have had a couple of polyp flare ups, usually when I have to travel. I have been taking a day or 2 of Prednisone to reduce them along with my daily meds, and I have been able to knock them back. I agree with other posters that solutions seem to unique to each individual. In my case, trial and error and keeping track of triggers have played a big part in my getting to the point where I am. I only hope it continues. I am fortunate to have health ins (at least for the time being) to cover much of the cost of the Zyflo which is not cheap. Still, I am weighing the options of maybe being on Zyflo for the rest of my life (I am 55) or trying desens and being on aspirin for the rest of my life. At least it is cheaper. Since I seem to be doing well on my current meds, I hate to rock the boat and risk return of polyps. Thanks again to all who post. The information here is invaluable and greatly appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2011 Report Share Posted August 16, 2011 Dear Sha - your message almost made me cry - how many more times do we have to read people's stories about the shockingly unbelievable treatment they have handed out to them by doctors who have not been properly taught about the functioning of the thyroid or what to do to make their patients well again, or who have not bothered to keep their knowledge about thyroid matters up to date. I am so pleased that you met up with who has so obviously put you on the right road to regaining your health again, and once you find the cause for your increased heart-rate, life should be fine and dandy. I would actually write a letter to this idiot who calls himself a doctor who believes that because your iron levels were OK in 2009 - they must be OK now. What a Plonker.(with a capital 'P') Send him a short and very much to the point letter and send a copy of the letter to the Head of Practice too, and ask for the letter of requests to be placed into your medical notes (keep a copy yourself in case you need it at a later date). In that letter, tell your doctor that because of the research you have done using top medical journals, you have learnt that low levels of specific minerals and vitamins can stop the thyroid hormone from being properly utilised at the cellular level and that you would like these specific minerals and vitamins tested. These are ferritin, vitamin B12, vitamin D3, magnesium, folate, copper and zinc. Add in your letter just a few of the references to the scientific research and studies that show this, and ask your GP to check them out (see below***). Ask that your GP allows you access to these results when they are returned together with the reference range for each of the tests done. You can then post them here on the forum and we will help with their interpretation. Most doctors, if your results are returned within the reference range will tell you that you do not have a problem, but we need to know whether the levels are at the bottom, the middle or the top of the reference range. Post this letter to him rather than handing it over to him in your letter to let you have his response in writing as a matter of urgency and ask for an appointment to get your blood drawn for these tests. Good luck. *** Low iron/ferritin: Iron deficiency is shown to significantly reduce T4 to T3 conversion, increase reverse T3 levels, and block the thermogenic (metabolism boosting) properties of thyroid hormone (1-4). Thus, iron deficiency, as indicated by an iron saturation below 25 or a ferritin below 70, will result in diminished intracellular T3 levels. Additionally, T4 should not be considered adequate thyroid replacement if iron deficiency is present (1-4)). 1. Dillman E, Gale C, Green W, et al. Hypothermia in iron deficiency due to altered triiodithyroidine metabolism. Regulatory, Integrative and Comparative Physiology 1980;239(5):377-R381. 2. SM, PE, Lukaski HC. In vitro hepatic thyroid hormone deiodination in iron-deficient rats: effect of dietary fat. Life Sci 1993;53(8):603-9. 3. Zimmermann MB, Köhrle J. The Impact of Iron and Selenium Deficiencies on Iodine and Thyroid Metabolism: Biochemistry and Relevance to Public Health. Thyroid 2002;12(10): 867-78. 4. Beard J, tobin B, Green W. Evidence for Thyroid Hormone Deficiency in Iron-Deficient Anemic Rats. J. Nutr. 1989;119:772-778. Low vitamin B12: http://www.ncbi.nlm.nih.gov/pubmed/18655403 Low vitamin D3: http://www.eje-online.org/cgi/content/abstract/113/3/329 and http://www.goodhormonehealth.com/VitaminD.pdf Low magnesium: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC292768/pdf/jcinvest00264-0105.pdf Low folate: http://www.clinchem.org/cgi/content/full/47/9/1738 and http://www.liebertonline.com/doi/abs/10.1089/thy.1999.9.1163 Low copper http://www.ithyroid.com/copper.htm http://www.drlwilson.com/articles/copper_toxicity_syndrome.htm http://www.ithyroid.com/copper.htm http://www.rjpbcs.com/pdf/2011_2(2)/68.pdf http://ajplegacy.physiology.org/content/171/3/652.extract Low zinc:http://www.istanbul.edu.tr/ffdbiyo/current4/07%20Iham%20AM%C4%B0R.pdf and http://articles.webraydian.com/article1648-Role_of_Zinc_and_Copper_in_Effective_Thyroid_Function.html Ferritin levels for women need to be between 100 and 130 according to Dr's Broda and Datis Kharrazian (for men around between 150 and 170) Vitamin B12 needs to be at the top of the range. D3 levels need to be about 50.  Magnesium levels need to be at the top of the range,. Luv - Sheila I am still having issues with the heart rate we are still tweaking but now starting to wonder if my iron levels are not right, but my gp is not helpful on this matter and said they did a mcv in 2009 and it was all fine and no need to do anymore testing on that. I know i will get well its just finding other things that might cause this heart rate , T3 is definately for me but its no easy road. i NEVER believed totally i had m.e or fibromyalgia i always had a gut feeling it was the thyroid. Any help on what i could be lacking to cause the heart rate would be helpful, but and i are now thinking iron. i've tried to keep this concise but i wanted to put in what i think started it and where i am at now. love Sha xxxxxx 1 of 1 File(s) LOW MINERALS AND VITAMINS AND THE THYROID CONNECTION.doc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2011 Report Share Posted August 16, 2011 oooo chris look at this ACTH is probably deficient Aldosterone is probably deficient Calcitocin is possibly deficient Cortisol is probably deficient DHEA is probably deficient EPO is possibly deficient Estrogen is probably deficient Growth Hormone is probably deficient Insulin is probably deficient Melatonin is probably deficient Pregnenolone is probably deficient Progestrerone is possibly deficient, if you are menturating or post-menopausal woman on HRT is possibly deficient, if you are post-menopausal woman not on HRT Testosterone is probably deficient, if you are a woman is possibly deficient, if you are a man Thyroid Hormones is probably deficient Vasopressin is probably deficient Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2011 Report Share Posted August 16, 2011 Tinnitus can be also caused by low B12 > > > Ahh......tinnitus is the magic word !!!! Tinnitus sufferers are notorious for having low magnesium levels. I used to have a bit of tinnitus many years ago before I went on the iodine protocol. The iodine protocol calls for 400 mgs of magnesium a day. At that time I had also read *The Magnesium Factor* which clued me into to lack of magnesium causing tinnitus..... > > It went away after I started supplementing...... > > Cheers, > JOT > > > > > > Hi Jot > > I;m doing so well on T3 but something is holding me back ! i have tinnitus all the time , dizziness but have just been told its all part of the illness and lifes a bitch. > Quote Link to comment Share on other sites More sharing options...
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