Guest guest Posted January 12, 2012 Report Share Posted January 12, 2012 Has anyone got any references about the rise in CFS/FM/ME following the implementation of lab tests and levothyroxine? I know a few people who are clearly hypothyroid but have been given such a diagnosis, with their GPs knowing no better and unwilling to help at all they aren't getting any better (the opposite, really). So I'm wondering if providing a proper reference might help give them something a bit more concrete to try and get help with? I've tried sending them here but no-one has ever appeared that I've sent. Niki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2012 Report Share Posted January 12, 2012 Sorry - can't help, but I've wondered about this too - surely diagnoses of CFS/ME/FM must have risen at least somewhat significantly following the phase-out of natural desiccated thyroid. My own GP has just tried to diagnose me with CFS... no, no, no! > > Has anyone got any references about the rise in CFS/FM/ME following the implementation of lab tests and levothyroxine? > > Niki > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2012 Report Share Posted January 12, 2012 > > > > Has anyone got any references about the rise in CFS/FM/ME following the implementation of lab tests and levothyroxine? > > > > Niki > > >Hi Niki, My endo sent me for an Assessment for CFS,i felt he was just passing me on and trying to wash his hands of me.I wanted a trial on T4/T3 combination ,even with a low t3 reading he would not give me t3.I thought if i went along with what he wanted he might rethink and give me a trial.I must say The Dr Who assessed me was great,i told her as soon as i walked in the room i had not got CFS,it was a thyroid problem that no one would help me resolve.She spent a lot of time with me,she did agree with me that i did not have the symptoms of CFS.Back i went to the dr , i'm sick of drs telling me that it's not my thyroid ,it has to be Something else,but they seem to be at a loss to what this something else is.I've lost count of the Tests and assessments they have sent me for (costing the nhs a fortune),yet they will not even give me a trial on t3.I feel this is what my body is telling me i need to get well.I feel that sometimes it's an easy option for Drs to say it's CFS/ME/FM.Regards Helen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2012 Report Share Posted January 13, 2012 I'm surprised she said that as, so far as I can see, the symptoms are the same. What symptoms are there of CFS/ME which could not be low thyoid and vice versa? Miriam > I must say the Dr who assessed me was great. I told her as soon as I walked in the room I had not got CFS, it was a thyroid problem that no-one would help me resolve. She spent a lot of time with me. She did agree with me that I did not have the symptoms of CFS. . . . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2012 Report Share Posted January 13, 2012 I'm kind of expecting my endo to give me that diagnosis too - she's offered no alternative explanations for my symptoms at all and the one questionable result from the last endo is now fine, and as she refuses to test my antibodies I can just see it coming. So I'm getting a full panel done privately next month, even without antibodies my T4/T3 are low anyway so I'll likely be self treating at that point, assuming the last two low vitamin/mineral levels don't have an effect when I get them sorted properly (folate and potassium - waiting on 5mg folate from canada as I'll never get a prescription). It just annoys me, it's clearly a get-out diagnosis for most of them - we don't know what's wrong so we'll say it's that, so you'll leave us alone. Infuriating. Still, I quoted Sheila's reply to the woman with the husband with CFS (that's what prompted me to ask for references) - did say I was asking about those but one person is going to print that out and take it to their GP (unfortunately not the one person in particular I want to get some answers, but it's something), I shall be interested to hear what he says! Niki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2012 Report Share Posted January 13, 2012 Helen I know this isn't the way the doctors would have you try new meds, but when I worked out I needed T3 my doctor refused. (in about 2003). I worked out I could buy my own off the internet so I did. I took them for a couple of months and felt better. I then told my doc and he was so horrified at the idea of me buying off the net, that he prescribed them immediately. I've since seen an endo who agreed that I need the t3... Not the most conventional way but it worked for me.... . I've lost count of the Tests and assessments they have sent me for (costing the nhs a fortune),yet they will not even give me a trial on t3.I feel this is what my body is telling me i need to get well.I feel that sometimes it's an easy option for Drs to say it's CFS/ME/FM.Regards Helen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2012 Report Share Posted January 13, 2012 Read http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome all those symptoms are many of the symptoms suffered by those with an underactive thyroid, or euthyroid hypometabolism (i.e. thyroid hormone unable to be utilised at the cellular level). There are NO tests to check for Chronic Fatigue and you are given NO treatment. Therefore, it makes sense that a doctor should switch the diagnosis to one of hypothyroidism and start treating with thyroid hormone replacement, the one to use being the active thyroid hormone T3. Patients with symptoms of hypothyroidism can have up to 80, if you do not have specific ones, it doesn't mean you do not have hypothyroidism. Doctors will give you a diagnosis of CFS, FM, ME if you complain of symptoms but have normal thyroid function test results, but the problem is, doctors are refusing to do the proper tests, i.e. TSH, free T4, free T3, TPO and Tg antibodies. Fight your corner and demand a second opinion from a thyroid specialist (not a diabetic specialist) - or alternatively, if the NHS are unable to help you, then you will have to help yourself, as so many of us here have had to do. Luv - Sheila > I must say the Dr who assessed me was great. I told her as soon as I walked in the room I had not got CFS, it was a thyroid problem that no-one would help me resolve. She spent a lot of time with me. She did agree with me that I did not have the symptoms of CFS. . . . No virus found in this message. Checked by AVG - www.avg.com Version: 2012.0.1901 / Virus Database: 2109/4739 - Release Date: 01/12/12 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2012 Report Share Posted January 13, 2012 Yes, I am thinking I shall have to do things that way round now as my GP keeps refusing to refer me to the consultant. Miriam --- In thyroid treatment , " Galathea " > > I took them for a couple of months and felt better. I then told my doc and he was so horrified at the idea of me buying off the net, that he prescribed them immediately. I've since seen an endo who agreed that I need the t3... Not the most conventional way but it worked for me.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2012 Report Share Posted January 13, 2012 > > Helen > > I know this isn't the way the doctors would have you try new meds, but when I worked out I needed T3 my doctor refused. (in about 2003). I worked out I could buy my own off the internet so I did. > > I took them for a couple of months and felt better. I then told my doc and he was so horrified at the idea of me buying off the net, that he prescribed them immediately. > > I've since seen an endo who agreed that I need the t3... > > Not the most conventional way but it worked for me.... > > . > > > I've lost count of the Tests and assessments they have sent me for (costing the nhs a fortune),yet they will not even give me a trial on t3.I feel this is what my body is telling me i need to get well.I feel that sometimes it's an easy option for Drs to say it's CFS/ME/FM.Regards Helen > > > Hi amanda,i've self medicated for 5 weeks on t4/ t3 combination,was just feeling a little better,went to my Dr told him i've gave myself t4/t3.He then ordered a blood test to see how i was doing.I knew what was going to happen before the blood test came back.He asked me not to take t3 until i had my blood test which was 5 days,as i knew it would it came back suppressed (just how it should i was not worried as i had no over active symptoms),but he thought i was over medicated and reduced my T4.He will not give me t3 and the endo will not give me t3.I can't tell you how frustrated i get with them. Regards Helen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2012 Report Share Posted January 13, 2012 As far as I know there are no CFS symptoms that are not found in thryoid sufferers as well. However, lots of thyroid symptoms appear in people who supposedly suffer with CFSOne of the symptoms that is not found in CFS sufferers is all over hair loss - there are no references to that being a CFS symptom - hair loss off the head they could explain as stress linked to CFS but all over is not stress related. It seems to me that all the CFS symptoms could be attributed to a thyroid problem but not all thyroid symptoms can be attributed to CFS.I have also been referred to CFS specialist and have been told categorically that I do not have CFS and that if I did no amount of thyroid medication would make me better.Dawn M "I'm surprised she said that as, so far as I can see, the symptoms are the same. What symptoms are there of CFS/ME which could not be low thyoid and vice versa? Miriam" - MARKETPLACE Stay on top of your group activity without leaving the page you're on - Get the Toolbar now. <img width="1" height="1" alt="" src="http://us.bc./b?P=684512f0-3dcf-11e1-a13e-5b4ada319c7c & T=1db2p51ts%2fX%3d1326449681%2fE%3d1705061104%2fR%3dgrphealth%2fK%3d5%2fV%3d2.1%2fW%3dH%2fY%3d%2fF%3d555355372%2fH%3dY29udGVudD0iR3JvdXBzO0hlYWx0aDtGbGlja3I7R2VvY2l0aWVzO1lhaG9vX1NlYXJjaF9NYXJrZXRpbmc7U21hbGxfQnVzaW5lc3M7UG9kY2FzdHM7Q2FsZW5kYXI7VHJhdmVsO01haWw7IiBkaXNhYmxlc2h1ZmZsaW5nPSIxIiBzZXJ2ZUlkPSI2ODQ1MTJmMC0zZGNmLTExZTEtYTEzZS01YjRhZGEzMTljN2MiIHNpdGVJZD0iNDQ1MjU1MSIgdFN0bXA9IjEzMjY0NDk2ODE0NzExMDMiIA--%2fQ%3d-1%2fS%3d1%2fJ%3d693E8962 & U=13c26e230%2fN%3d2rtqAdBDRvM-%2fC%3d493064.14543979.14562481.13298430%2fD%3dMKP1%2fB%3d6060255%2fV%3d1"> Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2012 Report Share Posted January 13, 2012 Hi Nikki, CFS/ME did not exist prior to the 'gold standard' TSH test which was introduce in the 60's, it became famous in the 80's as 'yuppy flu' and everyone thought people with it were just work shy and lazy or mental. Prior to the TSH test people were just given a trial of thyroxine or NDT to see if that made then better and it seems generally speaking it did.Dawn M > Has anyone got any references about the rise in CFS/FM/ME following the implementation of lab tests and levothyroxine? > > Niki > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2012 Report Share Posted January 14, 2012 Low body temperature number one cause is hypothermia - number two cause is hypothyroidism. Also, a slow Achilles tendon reflex is SPECIFIC to hypothyroidism. Both of these should be tested in those who are being given a diagnosis of CFS, ME or FM. Luv - Sheila As far as I know there are no CFS symptoms that are not found in thryoid sufferers as well. However, lots of thyroid symptoms appear in people who supposedly suffer with CFS One of the symptoms that is not found in CFS sufferers is all over hair loss - there are no references to that being a CFS symptom - hair loss off the head they could explain as stress linked to CFS but all over is not stress related. It seems to me that all the CFS symptoms could be attributed to a thyroid problem but not all thyroid symptoms can be attributed to CFS. I have also been referred to CFS specialist and have been told categorically that I do not have CFS and that if I did no amount of thyroid medication would make me better. Dawn M Quote Link to comment Share on other sites More sharing options...
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