Guest guest Posted September 19, 2004 Report Share Posted September 19, 2004 Welcome Gillian to our group. You will find a great group of people. I am still working to find a diagnosis right now and they have helped me a lot. You asked about thyroid medications. I don't have autoimmune issues with my thyroid, but I am 'thyroid hormone resistent' My t-4 doesn't convert to t-3 very efficiently. For the last 5 years I have been on a T-3 supplement. It is in a time release formula. That helps with the volatility issue. I get this from a local pharmacy. They compound it for me. The first 3 years I took it it helped me so much. I felt like I was in 'remission'. I was doing really well on it until problems with my pacer croped up and 3 opeations later I was down again. I don't do well with surgery. Most mito people don't. If you are interested in knowing more let me know and I will give you information and help you find a pharmacy that will do this for you. I was really interested in what you said about the thyroid and fatty oxidation defects. If you could send me some information on that I would really appreciate it. I suspect that I have a FOD. I am still trying to get the lab work done so I can find out. I went to one of the biggest labs in town to get the testing done. They weren't familiar with any of the tests and 3 of them were not even in their computer. When he told me that I decided to go to a lab that at least has experience with them. I called Dr. Enns last Tues to ask him for the name of a lab, but he hasn't gotten back to me yet. I am getting really good at waiting. No I am not!!!LOL Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 Hi Alice, Thanks for the reply...no short stature andg growth hormone have never been part of it ..in me or any family member nor has extra height...the CAH 'label' covers a very wide range of deficits on the steroid pathways...both glucocortoid and mineralcortoid including some late onset ones....It's the mineralcortoid ones causing all the 'excitement' at the moment.. These mineralcortoids can 'break' down due to deficiencies at various different parts and my electrolytes, BP,subnormal renin/aldosterone/DHEA/testosterone etc point very strongly to this...Thhat is why I am just so relieved I have an aptt. with a doc who specialises in these things... also Adenomas and pheo's which the metabolic doc said they find in mito. He explained that steroid problems have been known about for years in thyroid conditions, also usually maternal inheritance but the assumption was always glucocortoids !!! now they know better... When I read about the CAH and all its forms...there was one deficiency which sort of hit me...if you know what I mean !!!The Doc I am going to see also has Mito patients so it is all positive.. I understand perfectly what you say about mito. not having to be the main disease..a chicken/egg scenario..the wheelchair..well what can I say when a neuro. ignored for years the lab flagging B12 as below range !!!I've lernt that lesson...even the NHS here now allows patients copies of blood tests.. Gillian , > Gillian, > > I'm going to step in here with perhaps some question also some comments about the CAH. I believe this means that your adrenal gland is affected and it is a genetic condition from birth. My interpretation of this is that you are of short stature (but you could also be very tall) and have had a growth factor all your life. Are you aware that short stature is one symptom of Mito and that many Mito patients have taken growth hormones? Short stature is a definite problem in my family but we've not investigated it although it is always noted. We range in height from 4'11 " to about 5'2. One grandson was born with multiple limb issues that will probably mean that his height will be in the 3' to 4' range. His brother who is nearly 11 is about the size of your average 6 or 7 year old with no limb deformities. > > I also have autoimmune thyroid dysfunction and I am hypothyroid. I take Levelthyroid which is just generic for Synthroid. I also deal with diabetes, deafness, chronic anemia, GERD, visual disturbances, mobility impairment and the list goes on. The rule of thumb with Mito is that when 4 or more systems are involved - think Mito. They won't necessarily be the same 4 systems in any two individuals and each person must be treated for the symptoms they have. > > Mito doesn't necessarily have to be the main disease. You can have other diseases that affect the mitochondria. It's not an easy thing to explain but having any form of Mitochondrial disease can be a by product of another or vice versa. > > Electrolites are very important for anyone but especially the Mito patient. You've experienced the difference when yours are normal. I hope you find more normal days than abnormal. > > Welcome to posting on Mitoldies. We really are one big family and we want you to feel comfortable being a part of the group. It's fine with us if you ask any question that comes to mind. We'll do our best to help you. We also understand. Being in a wheelchair sometimes seems depressing, but the alternative just not letting the chair be a concern. At first, I was embarrassed that I needed to use equipment but now I know that I cannot do much in life without my equipment thus it gives me freedom for which I'm very grateful. > > Keep posting. I think you are going to be surprised to get responses you didn't expect. You also have the opportunity to be here when someone else joins the list dealing with some of the same conditions you have. It happens all the time. We post - thinking we will never have anything to offer this group but we surprise ourselves when we see the need to respond to someone else. > > I'm sorry you have the need to be here but very glad you came out of lurk mode. > > Alice > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 Gillian I believe you have Muscular Dystrophy Clinics over there. I also think they help some with wheelchairs or scooters. I have relatives in England and my son and daughter in law went to Ireland for their honeymoon, so I get pieces of info now and then. I have to take a much larger dose of thyroid med than is normal. I also take a different amount every other day which is strange. I also react to not having it within a day or two and it isn't suppose to be like that. I guess we are all " special " . Oh, to not be so special. laurie > > Reply-To: > Date: Mon, 20 Sep 2004 14:07:35 -0000 > To: > Subject: Re: First post here, > > Power chairs..scooters LOL I am in the Uk !!!! I have a lightweight > sports chair we had to buy ourselves !!!!... I keep reading and > seeing on our TV about how easy it is in the states to access > transport, buildings etc..wow are you the lucky people..I suppose we > may catch up eventually...my problem is not muscles > walkingwise..it's damage to the tibial nerves..apparently very > amusing when I do move my body to my family...laughter the best > medicine.You will have to excuse my British sense of humour at times. > > My thyroid swings about so much..and as there has been issues with > the stability of synthetics my GP thought as most people say the > mitochondria don't like things and find them hard to process it may > prefer the natural drugs..more akin to what our bodies should > make !!!less work to do . > I know that over here there is a big research project into > mitochondria in health and disease taking place over 3 years, our > govt. have done some of the funding for it. That is why I see Docs > who are not neuro's but interested in the metabolics side of > it..They told us that they think most mito's will be nuclear > encoded...that was after they took a fresh muscle biopsy..then > checked a frozen piece and found MITO. The neuro's were rather > shocked..it was not expected !!! > I always did like being different....... > Gillian > > > >>>> Gillian >>>> >>>> Welcome to posting. I am glad you are on the list. >>>> >>>> I have autoimmune thyroid disease which is separate from the > mito. >>> I have >>>> taken thyroid meds (synthroid) for over 40 years. It has >>> maintained my >>>> levels in the normal range. I have arthritis and chronic >>> tendonitis. I take >>>> Bextra for this, along with Glucosomine Chondrotin. Mine is not >>> rheumatoid >>>> arthritis. >>>> >>>> I hope the doctor gets all your thyroid and electrolyte problems >>> taken care >>>> of first. These could be causing some of the other problems. >>>> >>>> I have known people with mito who have lots of the other > problems >>> caused by >>>> mito without the neurological and muscular problems. I think > this >>> is kind of >>>> rare, but does exist. Mine started out as mostly muscular and I >>> now have >>>> many organ systems involved. >>>> >>>> What is CAH? >>>> >>>> laurie >>>> >>>>> From: " gillianstumps " >>>>> Reply-To: >>>>> Date: Sun, 19 Sep 2004 15:28:45 -0000 >>>>> To: >>>>> Subject: First post here, >>>>> >>>>> Hi all, >>>>> I was diagnosed with a complex1+1v deficiency wwith cox neg >>> fibres >>>>> last year..no grey matter disease just symmetric lesions in the >>>>> centrum semi-ovale and an emg showing no myopathy, neuropathy > or >>>>> PN..just unfortunatly a thoracic myleopathy possibly caused by >>> B12 >>>>> deficiency...my mum and I have tested neg on gene testing and > the >>>>> neuro has said this is not a neuro. illness but metabolic > disease >>>>> causing neuro.symptoms..I now see a metaboic consultant who he >>>>> referred me to and this doc. has other mito. patients. >>>>> I have been getting your digests for a long time now and > posting >>> on >>>>> braintalk where Alice told me to ask my questions here...so > here >>>>> goes.. >>>>> I have been reffered to a specialist endo clinic for CAH and >>> steroid >>>>> testing which conditions I was told by metabolic Doc are often >>> found >>>>> in mito. They already have evidence of steroid lack in me...has >>>>> anyone else been tested for this and if so did treatment help >>> you? >>>>> >>>>> I have kidney illness proven on MRA which is causing many >>> symptoms >>>>> and pain now despite normal blood/urine tests except for low >>>>> potassium raised ammonia nad urea..this kidney disease >>>>> tubularinterstitial nephritis I was told is often found in > Mito. >>>>> have any of you got this and how do you cope ??? >>>>> >>>>> We are also struggling to keep my autoimmune thyroid under >>> control >>>>> any advice?T4/T3/natural thyroid ? Had thyroid disease for 30 >>> years >>>>> now I also have rheumatoid factor on testing which GP thinks is >>> also >>>>> contributing to my problems and wonder what meds any of you > take >>>>> with mito to alleviate the joints swelling and muscle stiffness >>> in >>>>> this condition which is running alongside my mito. >>>>> >>>>> The metabolic doc also found massive parietal antibody activity >>>>> which has inflamed all my stomach (endoscopy)and caused PA (B12 >>> def) >>>>> As a result of all this I have been told I have a mito.cyto not >>>>> myopathy with endocrinopathies autoimmune mediated with no >>> diabetes >>>>> in myself or family.or cardiomyopathy. they have coronary > artery >>>>> disease >>>>> >>>>> Lots in fact most of what I have read does not 'fit' as most of >>> the >>>>> things listed at UMDF etc are not found in me it's almost as if >>> this >>>>> form of mito.cyto. is a seperate subset. I have high cholestral >>> and >>>>> the metabolic doc considered it okay to give me >>>>> avorstatin..simvastatin made me awfully weak...I know that they >>> find >>>>> fatty oxidation defects when the thyroid is not correctly >>> medicated >>>>> and there is lots of research on that . >>>>> >>>>> I am not interested nor is my family in genes etc...the > metabolic >>>>> bloke here works on avoiding organ dysfunction and treating > when >>>>> neccesary things caused by the mito. I think it's more holistic >>>>> >>>>> Oh well sorry this is so long and I have probably made it all >>> seem >>>>> muddled.I hope some of you with similar forms may have some >>>>> ideas/thoughts . >>>>> Thanks a lot..Gillian >>>>> >>>>> >>>>> >>>>> >>>>> >>>>> Medical advice, information, opinions, data and statements >>> contained herein >>>>> are not necessarily those of the list moderators. The author of >>> this e mail is >>>>> entirely responsible for its content. List members are reminded >>> of their >>>>> responsibility to evaluate the content of the postings and >>> consult with their >>>>> physicians regarding changes in their own treatment. >>>>> >>>>> Personal attacks are not permitted on the list and anyone who >>> sends one is >>>>> automatically moderated or removed depending on the severity of >>> the attack. >>>>> >>>>> >>>>> >>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 Gillian I believe you have Muscular Dystrophy Clinics over there. I also think they help some with wheelchairs or scooters. I have relatives in England and my son and daughter in law went to Ireland for their honeymoon, so I get pieces of info now and then. I have to take a much larger dose of thyroid med than is normal. I also take a different amount every other day which is strange. I also react to not having it within a day or two and it isn't suppose to be like that. I guess we are all " special " . Oh, to not be so special. laurie > > Reply-To: > Date: Mon, 20 Sep 2004 14:07:35 -0000 > To: > Subject: Re: First post here, > > Power chairs..scooters LOL I am in the Uk !!!! I have a lightweight > sports chair we had to buy ourselves !!!!... I keep reading and > seeing on our TV about how easy it is in the states to access > transport, buildings etc..wow are you the lucky people..I suppose we > may catch up eventually...my problem is not muscles > walkingwise..it's damage to the tibial nerves..apparently very > amusing when I do move my body to my family...laughter the best > medicine.You will have to excuse my British sense of humour at times. > > My thyroid swings about so much..and as there has been issues with > the stability of synthetics my GP thought as most people say the > mitochondria don't like things and find them hard to process it may > prefer the natural drugs..more akin to what our bodies should > make !!!less work to do . > I know that over here there is a big research project into > mitochondria in health and disease taking place over 3 years, our > govt. have done some of the funding for it. That is why I see Docs > who are not neuro's but interested in the metabolics side of > it..They told us that they think most mito's will be nuclear > encoded...that was after they took a fresh muscle biopsy..then > checked a frozen piece and found MITO. The neuro's were rather > shocked..it was not expected !!! > I always did like being different....... > Gillian > > > >>>> Gillian >>>> >>>> Welcome to posting. I am glad you are on the list. >>>> >>>> I have autoimmune thyroid disease which is separate from the > mito. >>> I have >>>> taken thyroid meds (synthroid) for over 40 years. It has >>> maintained my >>>> levels in the normal range. I have arthritis and chronic >>> tendonitis. I take >>>> Bextra for this, along with Glucosomine Chondrotin. Mine is not >>> rheumatoid >>>> arthritis. >>>> >>>> I hope the doctor gets all your thyroid and electrolyte problems >>> taken care >>>> of first. These could be causing some of the other problems. >>>> >>>> I have known people with mito who have lots of the other > problems >>> caused by >>>> mito without the neurological and muscular problems. I think > this >>> is kind of >>>> rare, but does exist. Mine started out as mostly muscular and I >>> now have >>>> many organ systems involved. >>>> >>>> What is CAH? >>>> >>>> laurie >>>> >>>>> From: " gillianstumps " >>>>> Reply-To: >>>>> Date: Sun, 19 Sep 2004 15:28:45 -0000 >>>>> To: >>>>> Subject: First post here, >>>>> >>>>> Hi all, >>>>> I was diagnosed with a complex1+1v deficiency wwith cox neg >>> fibres >>>>> last year..no grey matter disease just symmetric lesions in the >>>>> centrum semi-ovale and an emg showing no myopathy, neuropathy > or >>>>> PN..just unfortunatly a thoracic myleopathy possibly caused by >>> B12 >>>>> deficiency...my mum and I have tested neg on gene testing and > the >>>>> neuro has said this is not a neuro. illness but metabolic > disease >>>>> causing neuro.symptoms..I now see a metaboic consultant who he >>>>> referred me to and this doc. has other mito. patients. >>>>> I have been getting your digests for a long time now and > posting >>> on >>>>> braintalk where Alice told me to ask my questions here...so > here >>>>> goes.. >>>>> I have been reffered to a specialist endo clinic for CAH and >>> steroid >>>>> testing which conditions I was told by metabolic Doc are often >>> found >>>>> in mito. They already have evidence of steroid lack in me...has >>>>> anyone else been tested for this and if so did treatment help >>> you? >>>>> >>>>> I have kidney illness proven on MRA which is causing many >>> symptoms >>>>> and pain now despite normal blood/urine tests except for low >>>>> potassium raised ammonia nad urea..this kidney disease >>>>> tubularinterstitial nephritis I was told is often found in > Mito. >>>>> have any of you got this and how do you cope ??? >>>>> >>>>> We are also struggling to keep my autoimmune thyroid under >>> control >>>>> any advice?T4/T3/natural thyroid ? Had thyroid disease for 30 >>> years >>>>> now I also have rheumatoid factor on testing which GP thinks is >>> also >>>>> contributing to my problems and wonder what meds any of you > take >>>>> with mito to alleviate the joints swelling and muscle stiffness >>> in >>>>> this condition which is running alongside my mito. >>>>> >>>>> The metabolic doc also found massive parietal antibody activity >>>>> which has inflamed all my stomach (endoscopy)and caused PA (B12 >>> def) >>>>> As a result of all this I have been told I have a mito.cyto not >>>>> myopathy with endocrinopathies autoimmune mediated with no >>> diabetes >>>>> in myself or family.or cardiomyopathy. they have coronary > artery >>>>> disease >>>>> >>>>> Lots in fact most of what I have read does not 'fit' as most of >>> the >>>>> things listed at UMDF etc are not found in me it's almost as if >>> this >>>>> form of mito.cyto. is a seperate subset. I have high cholestral >>> and >>>>> the metabolic doc considered it okay to give me >>>>> avorstatin..simvastatin made me awfully weak...I know that they >>> find >>>>> fatty oxidation defects when the thyroid is not correctly >>> medicated >>>>> and there is lots of research on that . >>>>> >>>>> I am not interested nor is my family in genes etc...the > metabolic >>>>> bloke here works on avoiding organ dysfunction and treating > when >>>>> neccesary things caused by the mito. I think it's more holistic >>>>> >>>>> Oh well sorry this is so long and I have probably made it all >>> seem >>>>> muddled.I hope some of you with similar forms may have some >>>>> ideas/thoughts . >>>>> Thanks a lot..Gillian >>>>> >>>>> >>>>> >>>>> >>>>> >>>>> Medical advice, information, opinions, data and statements >>> contained herein >>>>> are not necessarily those of the list moderators. The author of >>> this e mail is >>>>> entirely responsible for its content. List members are reminded >>> of their >>>>> responsibility to evaluate the content of the postings and >>> consult with their >>>>> physicians regarding changes in their own treatment. >>>>> >>>>> Personal attacks are not permitted on the list and anyone who >>> sends one is >>>>> automatically moderated or removed depending on the severity of >>> the attack. >>>>> >>>>> >>>>> >>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 I found this in the UK. http://www.muscular-dystrophy.org/ Alice > Gillian > > I believe you have Muscular Dystrophy Clinics over there. I also think they > help some with wheelchairs or scooters. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 I found this in the UK. http://www.muscular-dystrophy.org/ Alice > Gillian > > I believe you have Muscular Dystrophy Clinics over there. I also think they > help some with wheelchairs or scooters. Quote Link to comment Share on other sites More sharing options...
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