Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 Thanks Bob, I had been musing along the same lines so its nice to get something more concrete on the subject! Hope you don't mind this long posting but, as you're a scientist, I reckon the detail would be of interest to you. All along I had been convinced my thyroid was playing up but had never been taken seriously by the medics. After the CO poisoning influence became apparent, they were happy and relieved to attribute everything to CO poisoning. It let them all off the hook for failing to do anything about my thyroid and, for an enchanted 3 months, it seemed that my ill health was behind me. Alas in August 2006, I got exposed to my house full of next door's car exhaust fumes, collapsed and instantaneously all the muscle pain, fuzzy thinking, dizziness and unco-ordination came back. My eyes swelled up and blistered, as did my mouth and nose lining. In following months any volatile chemicals caused my eyes to blister and me to have a rapid onset asthma attack. The violence of these reactions has died down with time but my skin and eyes still reacts by feeling like they are burning. Here is the fuller sequence of my results. Note the only blood test done when I was feeling terrible, and being unwittingly exposed to CO, was in November 2005. All the others are post-exposure. mid 1998 4.33 mu/L (following unexplained 2st weight gain and total exhaustion, etc after my son's birth - PCOS tested and ruled out) 02/11/2005 TSH=5.28 mu/L 08/06/2006 (a few weeks after CO exposure ended. Symptoms subsiding) TSH=5.62 mu/L T4=10.30 pmol/ Ferritin=18 ng/mL 06/09/2006 TSH=7.18 mu/L T4=9.70 pmol/ 08/11/1006 TSH=6.10 mu/L T4=11.20 pmol/ 16/11/2006 TSH=5.31 mu/L 27/02/2007 TSH=6.01 mu/L T4=11.10 pmol/ 16/05/2007 TSH=3.64 mu/L Ferritin=30 ng/mL 23/05/2007 TSH=5.49 mu/L July 2007 NO TSH TEST Ferritin=24 ng/mL Aug 2007 TSH=2.82 mu/L Oct 2007 TSH=4.01 mu/L Ferritin=30 ng/mL 11/1/2008 TSH=6.18 mu/L T4=9.20 pmol/ Ferritin=52 ng/mL 6 weeks of low-dose thyroxine 11/4/2008 TSH=4.88 mu/L Ferritin=187 ng/mL (NOTE TO SHEILA - 10 years is a long time to ignore results like those. If the 4.33 TSH back in 1998 had not been labelled " Normal " , I reckon my life would have been completely different, regardless of the CO exposure. I'm trying hard not to get too bitter, but still...!!) The only result relating to a period of wellness is the June 2006 one. I felt mostly awful for ALL the other tests. Ironically I recall feeling truly terrible when the August 2007 test was done but as it was only 2.82, the endocrinologist disregarded all the other results and declared me well. Apparently he discharged me at that time as I was considered normal, but my memory problems were so bad then I can't remember being told. I only found out I was not under the endo, when I phoned the hospital in January to ask when my next appointment was. Because the medical profession has been so loathe to diagnose or treat me, it has provided ample opportunity to see what my body has done without intervention. My ferritin levels did eventually respond to high-dose liquid iron supplements as evidenced by the result on 11/1/2008 Ferritin=52. BUT, though I did feel perkier, there was no corresponding improvement brain function or in TSH, which rose to TSH=6.18 !! That indicated to me that it wasn't low ferritin causing my main symptoms but an underlying thyroid problem. Also, the thyroid function had not improved, in spite of the ferritin level rise. I was secretly hoping that the CO poisoning had caused my ferritin drop which had triggered the thyroid malfunction and that the removal of the cause of the ferritin drop would allow my thyroid to sort itself out. The results indicate otherwise. The big surprise is the 11/4/2008 blood test. I had been on low dose thyroxine for 6 weeks. Note the huge rise in Ferritin to 187. The TSH at 4.88 has dropped but is still too high methinks. My reasoning is that the thyroid malfunction had compromised my absorbion of iron, not the other way round. The CO poisoning had probably depleted my iron reserves, whcih didn't help. Once the pressure was off my thyroid, the iron levels were able to rise - either that or it is a laboratory cock up !! I have to say that I do not think that the CO poisoning is the sole cause of my thyroid problems, though it may well have been the trigger. Every woman descended from my great-gran Charlotte (a photograph shows she had Graves disease) has gone on to develop mostly hypothyroidism at some stage of life. The male descendants, while not getting diagnosed with thyroid problems, generally present with high cholesterol (irrespective of diet and lifestyle) and have a tendency to develop heart problems in their 40s and 50s. I have discovered 2 cousins with triple-bypasses. Great-gran Charlotte's forebears also have descendants with thyroid problems - 2 were even committed to lunatic asylums as a result of mania, one eventually being diagnosed as hyperthyroid during her postmortem ( So, I've lost my personal injuries claim for injury caused by CO damage as, realistically, the symptoms which were so damaging are more accurately attributable to underactive thyroid! Theoretically the good news is that those symptoms, unlike CO damage, ought to be reversible and managable. The bad news is, in practice, the NHS is failing thyroid patients in the most scandalous manner, so it is still going to be an uphill struggle for me. Your comment " Leaking boilers may indeed be having a far more serious effect than has been publicly admitted. " corresponds with the findings of another support group I found. Check out www.co-awareness.org I spoke to some of the organisers and learned that their partners developed underactive thyroids following their CO exposure. Like me they are trapped in a medical limbo. Unlike me, all of those people had NO FAMILY HISTORY of thyroid problems. That makes the issue very worrying for the general population. Worse, the problem is widespead and the Co-awareness group has gathered considerable research indicating that it is " products of combustion " from a variety of unavoidable, everyday sources (car fumes, air travel, etc) which is causing mass-malaise and possibly leading to an increase in thyroid symptoms in the population. Tracey > > > > Here is the timetable of events in context: > > > > Feb 1998 to March 2008 - classic underactive thyroid symptoms, TSHs all between 3.8 to 7.8, constant GP visits BUT no diagnosis. > > Starting ometime after 1997, ending May 2006 - faulty boiler flue leaking Carbon Monoxide. This was subsequently blamed for all my thyroid symptoms, which are extremely similar to CO poisoning. > > Physical and mental improvement from June 2006 but symptoms > returned > > with a vengeance August 2006, so back to pestering the GP again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 Nitric Oxide/Carbon Monoxide Hi Tracey, Thanks for that follow-up; I'll do a quick reply and come back to a longer response later. ....One of the places that ferritin gets stored is in the mitochondria. I can imagine that if it's all in the mitochondria, it would tend to stop the mitochondria working well (just supposition at this stage). The other storage place for iron is the liver. In haemochromatosis (iron overload) excess iron is stored in lots of different tissues. The usual reaction to infection is to hide the iron away from the pathogens, but I suspect that the good bacteria and the body's own cells would also suffer in these circumstances, and it would then look like iron deficiency anemia....so perhaps some of the thyroid problems look like iron deficiency on this account….the iron being hidden away in what the body perceives as an infection (inflammatory responses etc). As long as the body is hypothyroid, the machinery for disposal of waste protein will only work at reduced effectiveness leaving partly demolished proteins that can cause prolonged autoimmune reactions, since these proteins then look like `foreign' protein with some of their intact sugars (glycoproteins) still in place. The sugars mark the protein as friend or foe. Products of combustion include not just carbon monoxide, but also nitrogen mon- and/or di-oxide (known as NOx). Nitric oxide (NO) is otherwise known as nitrogen monoxide and it reacts quickly with oxygen to form an equilibrium mixture of NO and NO2 (hence NOx). Since the discovery a couple of decades back, that NO is a profoundly influential signalling molecule in the body (nitroglycerine was used to treat angina ~ it releases a tiny amount of NO that dilates blood vessels), great strides have been made in discovering the other systems that are also affected (memory is one of them). Work has been done on the combined action of carbon monoxide and nitrogen oxides due to this extreme sensitivity of the body to the influence of these two gases. I'll go dig some of this out later. The somewhat surprising ebb and flow of your thyroid condition and the fluctuating level of ferritin, with/or without iron supplementation is worth looking at. I'd call the ambivalent diagnosis of your thyroid status as unhelpful, even post-natally. There has to be a limit as to how long and for which severe symptoms, there can be an excuse for ignoring the clear signs and symptoms of hypothyroidism. Were you tested for your folate and/or vit B12 status during any of that relevant period? No signs of pernicious anemia? No iron deficiency? No neurological signs? best wishes Bob >> Thanks Bob,> > I had been musing along the same lines so its nice to get something > more concrete on the subject! Hope you don't mind this long posting > but, as you're a scientist, I reckon the detail would be of interest Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 Tracey, I can't believe what you have been through. I really hope that your health returns to normal and that you feel good again soon. P Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 Thanks Patersonia, In all of this the thing I have found most astonishing is the difference in how I was treated as a CO victim in contrast to how I've been treated as a thyroid sufferer. The toxicology team were compassionate and treated me as an intelligent human being. They asked questions, listened to my answers and encouraged me to ask questions. They carried out tests and, more importantly, kept me in the loop by providing me, not just the GP, with results. They also seemed to use a great deal of common sense and autonomy - for example, one of the team got an expert outside the team to re-examine the MRI scan of my brain. If they were just ticking boxes, they could have just closed their report on the basis of the alarming results of the 1st cognitive fuction test and no-one would have been any the wiser. I'm so glad they chose to investigate further rather than concluding my brain function was impaired and leaving it at that. It has really shown up the deficits in the management of thyroid illnesses. I am frequently shocked when I read what other people on this forum have gone through and are still going through. Tracey > > Tracey, I can't believe what you have been through. I really hope > that your health returns to normal and that you feel good again soon. > P Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 Thanks for the explanation Bob. To answer a couple of your comments: > The somewhat surprising ebb and flow of your thyroid condition and the fluctuating level of ferritin, with/or without iron supplementation is> worth looking at.The GP was also puzzled by the erratic fluctuations and swings in my TSH levels. I have been tested for antibodies on 2 occasions now and both came back negative. Unfortunately the lab does not provide actual figures, so "negative" may not mean no antibodies but may mean a certain number of antibodies. On record Hashimotos has been ruled out.> Were you tested for your folate and/or vit B12 status during any of that> relevant period? No signs of pernicious anemia? No iron deficiency? No neurological signs? At one stage the GP commented on my marked facial assymetry. There was some concern that I may have suffered a minor stroke BUT, with current hindsight, the MRI scan indicates that I did not - thank goodness! I do have some B12 and foliate results, as it happens. 8/6/2006 - B12= 132 ng/L folate=8.3ug/L16/5/2007 - B12 "normal"July 2007 - B12= 216 ng/L Folate not tested All the above were considered OK. What do you reckon? Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 Hi Tracey, It is good that the toxicology team were so thorough and cared for you so well. Sorry to hear that it hasn't been the same re thyroid treatment. I continue to wonder WHY this is the case Tracey. It's isn't as though everyone wants to be rushing off to the doctor just to visit them! I can think of at least a thousand things that I'd rather be doing than going to the doctor and I'm sure that most people feel the same way!!!! The thing that 'gets' me from reading messages on this forum is that most of the symptoms seem to be considered thyroid related by the doctors UNTIL the TSH level becomes 'normal' and then they seem to think that the symptoms are related to something else or that people have made them up. That just doesn't make any logical sense to me. If the symptoms are the same and the TSH level is normal, doesn't it stand to reason that the thyroid related symptoms still exist despite the TSH level. Anyone could work that out, so I just don't understand the docs. I live in Australia and I have a family member whose thyroid condition hasn't been treated correctly. The doc has basically written her off as a lost cause. Told her she will never be well again. Just terrible. I saw a doctor for years who told me I didn't have a thyroid condition despite a TSH of 5.6. She told me that she wouldn't start treating me until my TSH was around 10!!!! It ended up that my TSH got close to that level anyway!!! Luckily I sought and found two doctors who are willing to explore options, do the tests I want + also suggest other tests (which have shown that I have a number of 'abnormal' results). It shouldn't be this difficult for people in the UK and other countries to seek and get quality health care for thyroid related conditions. P > In all of this the thing I have found most astonishing is the difference in how I was treated as a CO victim in contrast to how I've been treated as a thyroid sufferer. It has really shown up the deficits in the management of thyroid illnesses. I am frequently shocked when I read what other people on this forum have gone through and are still going through. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Hi Tracey 'save as' https://content.nejm.org/cgi/reprint/348/22/2204.pdf Pernicious Anemia with Neuropsychiatric Dysfunction in a Patient with Sickle Cell Anemia Treated with Folate Supplementation n engl j med 348;22 www.nejm.org may 29, 2003 I got to recall some work I did 45yrs back in real chemistry (ignore the boring bits)....I was making ruthenium nitrosyl trihydroxide from ruthenium chloride. It reacts very much like iron. They both are able to add either carbon monoxide or nitrosyl molecules to the iron/ruthenium in varying proportions as likely will happen in carbon monoxide poisoning. Because cobalt will also bolt on carbon monoxide under appropriate circumstances, it too will affect the incidence of low vit B12 (cobalamin ~ contains cobalt). The apparent iron deficiency anemia caused by the carbon monoxide will the take time to resolve on removal from exposure. Something like six-nine months if the half-life of erythrocytes is about 50 days, but maybe longer or shorter if the erythrocytes are impaired in their breakdown. During that time the iron will be recycled into either new red cells or it will be stored. It needs a good supply of thyroid hormone to renew blood cells. Looking at the report above, I'd suspect you were mentally impaired with a low cobalamin (vit B12) and/or a low folate level (in view of the other factors). Added to the low iron anemia that would be a very serious problem. Whether or not your thyroid dysfunction was evident or indeed caused by the ongoing low iron/ferritin, one might expect that recovery would be haphazard and difficult to explain. A surprising rebound of ferritin might be accounted for by the ready availablity of the iron in your liver but it was not mobilised until the thyroid function started to recover and/or the cobalamin level began to 'normalise'. Iron is available in what's known as the Chelatable Iron Pool and it seems to need dinitrosyliron to cause changes and/or movement of that iron across the cell/organelle membranes. I saw a paper a couple of months back, that hinted at this; other papers also place emphasis on the expanding knowledge associated with iron metabolic processes. More on this later.... best wishes Bob (not copyright to me ~ please use as best fits the need) > > Thanks for the explanation Bob. To answer a couple of your comments: > > The somewhat surprising ebb and flow of your thyroid condition and > the fluctuating level of ferritin, with/or without iron > supplementation is worth looking at. > > The GP was also puzzled by the erratic fluctuations and swings in > my TSH levels. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Hi Tracey ....and I wonder if the Sickle Cell phenomenon HAS ANYTHING TO DO WITH CARBOXYHAEMOGLOBIN AND/OR LOW COBALAMIN ?? ie do the erythrocytes change shape merely due to the pernicious.. and/or low iron anemia? Best wishes Bob > > > Thanks for the explanation Bob. To answer a couple of your comments: > > > The somewhat surprising ebb and flow of your thyroid condition and the > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Hi Tracey, ...so I looked up Sickle Cell anemia ~ Linus ing discovered it was a 'molecular disease'.....that fits...:-) best wishes Bob > > > Thanks for the explanation Bob. To answer a couple of your comments: > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Hi Tracey, Look what came out of the woodwork...? http://www.springerlink.com/content/w3udxdp7832t95b9/ Circular dichroism spectra of human hemoglobin reveal a reversible structural transition at body temperature Journal European Biophysics Journal Publisher Springer Berlin / Heidelberg ISSN 0175-7571 (Print) 1432-1017 (Online) Issue Volume 33, Number 6 / October, 2004 Category Article DOI 10.1007/s00249-004-0401-8 Pages 490-496 Subject Collection Physics and Astronomy SpringerLink Date Thursday, March 25, 2004 Lowered body temperature ( as per hypothyroidism ) changes the shap of the haemoglobin in the red cells! Now we can see why the red cells might have changed shape, merely from lowered body temperature...OMG...irrespective of the carbon monoxide poisoning ? best wishes Bob > > > Thanks for the explanation Bob. To answer a couple of your comments: > > > The somewhat surprising ebb and flow of your thyroid condition and the Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Hi Tracey I think they missed the pernicious anemia in Jun 2006 and, most likely, again in May/July 2007 ( whatever the range used ~ these values look too low ). A mechanism for carbon monoxide depleting cobalamin probably exists but I haven't found it in the literature yet...it must be there somewhere. If I have to propose it to get it looked for: I propose that carbon monoxide poisoning is a cause of low vit B12. By inference, that might also include the rapid hemolysis of blood in raising carbon monoxide through the breakdown of the haem units. It goes without saying that the same applies to smokers. ie if the leaking boilers are causing carbon monoxide poisoning on a pretty massive scale, then one ought to see an epidemic of unexplained pernicious anemia. ( you read it here first ~ 16th June 2008) best wishes Bob > > > Thanks for the explanation Bob. To answer a couple of your comments: > I do have some B12 and foliate results, as it happens. > > 8/6/2006 - B12= 132 ng/L folate=8.3ug/L > 16/5/2007 - B12 " normal " > July 2007 - B12= 216 ng/L Folate not tested > > All the above were considered OK. What do you reckon? > > Tracey > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Thanks again Bob. I've just been catching up with all your postings, you have been busy! I DID ask both the GP and the endo if I had anaemia and both said that I did not as my results were " normal " . How I hate that word! In fact, during the time I was being poisoned anaemia was discounted altogether because I was so rosy cheeked (side effect of CO poisoning!!) and not at all pale. The CO-Awareness group think that faulty boilers are the least of our worries as there are many other harder to avoid sources. Incidentally the wife of one of the CO group has pernicious anaemia and toxic hypothermia (when her temperature drops to such low levels she ends up in hospital) - that fits one of your deductions in another post. Tracey > > Hi Tracey > > I think they missed the pernicious anemia in Jun 2006 and, most likely, > again in May/July 2007 ( whatever the range used ~ these values look > too low ). > > A mechanism for carbon monoxide depleting cobalamin probably exists but > I haven't found it in the literature yet...it must be there somewhere. > > If I have to propose it to get it looked for: > > I propose that carbon monoxide poisoning is a cause of low vit B12. > By inference, that might also include the rapid hemolysis of blood in > raising carbon monoxide through the breakdown of the haem units. > > It goes without saying that the same applies to smokers. > > ie if the leaking boilers are causing carbon monoxide poisoning on a > pretty massive scale, then one ought to see an epidemic of unexplained > pernicious anemia. ( you read it here first ~ 16th June 2008) > > best wishes > Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2008 Report Share Posted June 17, 2008 I had no idea you lived in Australia Pat, I always imagined you just down the road. Seems things are no different the world over regarding the appalling lack of diagnosis and treatment of hypothyroidism, and I seriously wonder WHY. I hate conspiracy theories, but .... Luv - Sheila > It shouldn't be this difficult for people in the UK and other > countries to seek and get quality health care for thyroid related > conditions. > > P > > > > > In all of this the thing I have found most astonishing is the > difference in how I was treated as a CO victim in contrast to how > I've been treated as a thyroid sufferer. > It has really shown up the deficits in the management of thyroid > illnesses. I am frequently shocked when I read what other people on > this forum have gone through and are still going through. > > > Quote Link to comment Share on other sites More sharing options...
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