Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 Hi all, I was just wondering if perhaps you all can offer me some help and some suggestions. I am a 30 year old female who has been struggling with gastroparesis and colonic inertia for the last four years. Basically my stomach and colon stay contracted all of the time and do not relax and contract in a rhythm to allow food to pass through the digestive tract very easily. Throughout the past four years I have had feeding tubes and struggle to keep my nutrition up. I do not have a tube now, but weigh 94 pounds and am 5'3. The diet for this problem consists of simple carbs and sugars which are easily digested. As a result I constantly have thrush. More recently my doc put me on diflucan for esophageal candida after doing an endoscopy. I try to avoid sugar, but when I do this I only lose more weight. I can only snack on things throughout the day, and cannot even think of eating an actual portion of food. I have a constant tightness in my chest and throat which my doc says is from the candida. Could anyone provide me with suggestions on how to help improve my situation? Thank you so much in advance, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2010 Report Share Posted July 16, 2010 Noticed your user name - you aren't having problems with the endos at UHCW are you? If you are, there are a number of us in a similar position - please PM me if you would like to get your point across. We too are sick of being patronised by so called consultants who seem to know less about our conditions than we do! D > > Hi, > > I need your help, if possible. > > Quick background: > We have cases of thyroid (hyper and hypo) problems in my family. I am now (in my 40s) experiencing extreme brain-numbing tiredness, weight gain on an average daily calorific load of 900-1000 calories (I'm never hungry), totally undetectable levels of ferritin (since had infusions with little behavioural benefit; as soon as the stuff is in me, it starts reducing), oedema etc. etc. (We also have SLE in the family, and my rheumy told me that although autoimmune disorders are highly likely, as of 2005, my results were just about normal. Positive ANA, everything else 'within normal limits'.) > > My GP sent me for thyroid tests - my TSH was 4.54 and even though our local hospital say that is normal (upper limit is 5.50) I got my referral. I won't say anything about my consultation, because if I start... But even without a second blood test, the registrar said " Nothing wrong with you. Goodbye " . She didn't even really want to know about my symptoms or how I feel. > > Two months later I got the results of a second blood test back, this time with T4, and I'm a little confused. > > My TSH is down to 2.46; my T4 is 16.9 > > I have been offered a second referral with the consultant; my question is, is it worth following through with this? I am sure I'm not alone here with reaching a point where I cannot stand to be patronised by one more physician. I am literally very nearly out of hope. > > Thanks. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2010 Report Share Posted July 16, 2010 Dear Alison - this is appalling and you do not have to put up with this. Here's what you do. 1) Write a letter to your GP and send a copy to the Head of Practice 2) List all of y our symptoms and signs (check our web site www.tpa-uk.org.uk under 'Hypothyroidism' 3) Take your basal temperature for 4/5 mornings before you get out of bed and list them,. Normal temp. is 98.6. If yours is 97,8 (and it could be much less), this is an indication your metabolism isn't working - the most likely cause is hypothyroidism. 4) List all the members of your family with a thyroid or autoimmune disease. 5) List all of the blood tests you need doing apart from your TSH, and FT4 which you have had done. These are Free T3 and tests to see if you have thyroid antibodies. You also need to ask for the following blood tests to be done to see whether any of these are low in the reference range: ferritin (stored iron), vitamin D3, vitamin B12, magnesium, folate, copper and zinc. If ANY of these are low in the reference range, it means that your thyroid hormone secreted by your thyroid gland will be unable to get into your cells - in your body and brain. When you get these results from your doctor, make sure you get the actual figures and the reference range for each of the tests. DO NOT EVER ALLOW A DOCTOR TO TELL YOU THAT YOUR BLOOD TESTS ARE 'NORMAL' JUST BECAUSE THEY COME BACK ANYWHERE WITHIN THE REF. RANGE. 6) Ask your doctor for a referral to an endocrinologist of your choice. You do not have to be referred to the one's that he offers, especially if none of them have a specialty in thyroid disease (most specialise in diabetes which is no good to us). I have sent you a list of such doctors who know a little more about thyroid disease than most NHS doctors. You CAN be seen out of the area if there is not one in your area. 7) Last, ask for your letter of requests to be placed into your medical notes (THIS IS MOST IMPORTANT). If your GP refuses to carry out any of these requests and it is later found you are suffering with hypothyroidism or any of the above blood tests are low in the range, and he leaves you untreated, I can assure you he will be in trouble. That is why we always recommend members WRITE THEIR REQUESTS DOWN AND ASK THEM TO BE PUT INTO THEIR MEDICAL NOTES. Good luck. Luv - Sheila Hi, I need your help, if possible. Quick background: We have cases of thyroid (hyper and hypo) problems in my family. I am now (in my 40s) experiencing extreme brain-numbing tiredness, weight gain on an average daily calorific load of 900-1000 calories (I'm never hungry), totally undetectable levels of ferritin (since had infusions with little behavioural benefit; as soon as the stuff is in me, it starts reducing), oedema etc. etc. (We also have SLE in the family, and my rheumy told me that although autoimmune disorders are highly likely, as of 2005, my results were just about normal. Positive ANA, everything else 'within normal limits'.) My GP sent me for thyroid tests - my TSH was 4.54 and even though our local hospital say that is normal (upper limit is 5.50) I got my referral. I won't say anything about my consultation, because if I start... But even without a second blood test, the registrar said " Nothing wrong with you. Goodbye " . She didn't even really want to know about my symptoms or how I feel. Two months later I got the results of a second blood test back, this time with T4, and I'm a little confused. My TSH is down to 2.46; my T4 is 16.9 I have been offered a second referral with the consultant; my question is, is it worth following through with this? I am sure I'm not alone here with reaching a point where I cannot stand to be patronised by one more physician. I am literally very nearly out of hope. Thanks. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.441 / Virus Database: 271.1.1/3008 - Release Date: 07/15/10 18:35:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2010 Report Share Posted July 17, 2010 Hi Alison, This is sadly too common- the blood tests are looked at and not taken into consideration with the patient- who is suffering all the symptoms. TSh varying is no uncommon if there is autoimmume disease- the attacks are not constant so antibody levels and hormone is dumpred into the blood as a results of the deastructio, so for a while there will be more there until the flare up subsides. This can go on for years until the thyroid is finally burned out. antibody tests should confirm this. TPO and TP-ag. As you know low iron levels will also cause fatigue- this msut be adressed continually and treating any hypo will help get the iron into the body. TSH of 4.5 is not normal most healthy folk have a TSH of 1.0 and in any other country you would get a diagnosis with that level- USA upper limit 3.3 germany 2.5 and so on. I suggest you write a letter- or take it into you next appointment- docs like having everything in front of them on one side of A4 List your symptoms ( see list in files to make sure you get everything. give test results with their ranges, ask for selenium zinc vit D3 and ferritin( again) to be tested as if any of these are low it will affect thyroid absorption also mercury levels ( from amalgams) if high can aslo block absorption as can systemic candida and low adrenal levels. keep a copy of your letter and ask for it to be kept on your files. > thyroid treatment > From: alison23@...> Date: Fri, 16 Jul 2010 11:29:02 +0000> Subject: Help please?> > Hi,> > I need your help, if possible.> > Quick background:> We have cases of thyroid (hyper and hypo) problems in my family. I am now (in my 40s) experiencing extreme brain-numbing tiredness, weight gain on an average daily calorific load of 900-1000 calories (I'm never hungry), totally undetectable levels of ferritin (since had infusions with little behavioural benefit; as soon as the stuff is in me, it starts reducing), oedema etc. etc. (We also have SLE in the family, and my rheumy told me that although autoimmune disorders are highly likely, as of 2005, my results were just about normal. Positive ANA, everything else 'within normal limits'.)> > My GP sent me for thyroid tests - my TSH was 4.54 and even though our local hospital say that is normal (upper limit is 5.50) I got my referral. I won't say anything about my consultation, because if I start... But even without a second blood test, the registrar said "Nothing wrong with you. Goodbye". She didn't even really want to know about my symptoms or how I feel.> > Two months later I got the results of a second blood test back, this time with T4, and I'm a little confused.> > My TSH is down to 2.46; my T4 is 16.9> > I have been offered a second referral with the consultant; my question is, is it worth following through with this? I am sure I'm not alone here with reaching a point where I cannot stand to be patronised by one more physician. I am literally very nearly out of hope.> > Thanks.> > > > ------------------------------------> > 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 July 17, 2010 Report Share Posted July 17, 2010 Hi Alison Thought it was worth checking - sky blue autmoatically means Coventry City to me and I am in the process of creating a FB group for those who have been abused, neglected or otherwise upset by the situation at UHCW, where the last consultant I saw could not even spell endocrine! D > > > > Noticed your user name - you aren't having problems with the endos at UHCW are you? If you are, there are a number of us in a similar position - please PM me if you would like to get your point across. We too are sick of being patronised by so called consultants who seem to know less about our conditions than we do! > > > > D > > > Quote Link to comment Share on other sites More sharing options...
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