puzzled !

[mrspuddleduck]

Firstly, and I can't stress this enough - I'm not a doctor so I can only suggest things that perhaps you should go back to the GP about. Also not knowing the specific results you have is abit like fumbling around for a light switch in the dark!
The amount of vit D you are taking is.more a 'normal' supplement level. If you do have vit D defiency you need to talk to your GP about correcting the dosage they are prescribing. Secondly, and again without knowing detail, it does sound like you need to look closely at your diet. Being blunt, it sounds like you could be at least on the way to pre diabetes if not diabetic. I totally understand the weird food stuff, I have malabsorption so believe me my diet looks very odd to the average Jo Bloggs but in reality has been fine tuned over years in order for me to remain as healthy as possible!! I would suggest you get a copy of the ' Carbs and Cals' book as a good start cos you can play with any foods you like whilst looking at the values of what food your eating and its brilliant at helping with portion sizes of everything!! I do think you need to go back to the doc, ask him to adjust you vit D and ask him for an Hba1c. Say to him that something feels like its going wrong and you've decided it's time to review your lifestyle and make changes to improve your health - usually the doc will respond more positively to someone who comes across as wanting to take control of their situation. Finally I would say this might take a while longer to sort out but I don't think you sound like a lost cause yet!! Sue xx

 

[jshire]

Firstly, and I can't stress this enough - I'm not a doctor so I can only suggest things that perhaps you should go back to the GP about. Also not knowing the specific results you have is abit like fumbling around for a light switch in the dark!
The amount of vit D you are taking is.more a 'normal' supplement level. If you do have vit D defiency you need to talk to your GP about correcting the dosage they are prescribing. Secondly, and again without knowing detail, it does sound like you need to look closely at your diet. Being blunt, it sounds like you could be at least on the way to pre diabetes if not diabetic. I totally understand the weird food stuff, I have malabsorption so believe me my diet looks very odd to the average Jo Bloggs but in reality has been fine tuned over years in order for me to remain as healthy as possible!! I would suggest you get a copy of the ' Carbs and Cals' book as a good start cos you can play with any foods you like whilst looking at the values of what food your eating and its brilliant at helping with portion sizes of everything!! I do think you need to go back to the doc, ask him to adjust you vit D and ask him for an Hba1c. Say to him that something feels like its going wrong and you've decided it's time to review your lifestyle and make changes to improve your health - usually the doc will respond more positively to someone who comes across as wanting to take control of their situation. Finally I would say this might take a while longer to sort out but I don't think you sound like a lost cause yet!! Sue xx

thanks Sue. I have been back to my gp with that kind of attitude - for the past 2 years. I've been told 'there's nothing wrong with you' or similar & i've had to say 'there **** well is !'. As for my diet - as I said its not a particularly unhealthy one - I just don't eat some of the regular stuff lots of folks do. I do eat veg & fruit etc. I could go into more detail about the emotional effect of all this & how it sometimes is hard to motivate myself to even bother cooking for myself but that would be a long story

 

[donnellysdogs]

Incidentally.. Adding to this.
I too was diagnosed with pernicious anaemia (b12 deficiency) and fibromyalgia and investigated further with my legs (EMG) tests for amyotrophy.

Long story and told many times here.. My pains have gone.. Pretty much all the time now.
I suffered for 20 years.

Mine was indeed due to chemicals.. But from an intolerance to sweeteners and aspartame. Ie diet coke, sugar free gum etc. (i never had a lot of the coke, but the gum I chewed daily).

I never had a lot of ready meals or takeaways or restaurant food etc but on odd occasions of house moves, no kitchens etc I ate them.

Anyhow.. There are no tests for intolerances to the additives. I eat no preservatives or E numbers or sweeteners at all now.

Recently I was informed that a consultant in 2003 had advised intolerance was likely for my pains. It got missed off my records and I wasn't informed until I asked for a full review and to see my records.

Since eating totally natural products.. My pains have gone. The only exception to this is tey come back immediately if I have perhaps been out for a meal and I cannot be 100% sure of its contents etc.

The other addition to this is that even my pernicious anaemia B12 injections stopped about 5 years ago when after living 6 months on pretty much ready meals (due to another house move)... We started eating proper food again...this I have only realised in last few weeks. My GP atthe time said that my levels had gone up and I didn't need B12 jabs. Again a long story, told often on here but once on B12jabs they are normally for life. Stopping those ready meals and reverting to my basic good cleaner eating must have eliminated my need for B12 jabs. At one point I was even paying privately to get infusions from an anaethetist in Wales...

Nowadays the only processed food I have is butter, milk and feta cheese.. Everything else is very much checked for any E numbers or any sweeteners etc.

It is hard to do this but it keeps me pretty much pain free. My sleep has improved in so far as I no longer sleep talk or have consustent numbness and pain whilst I sleep and I no longer have nightmares.

It maybe that you may have intolerances to either the chemicals that you worked with or foods. Certainly all my neuropathy, amyotrophy, b12, palindromic rheumatism, fibromyalgia were either negative test results or been removed as a current illness.

Incidentally as well.. I also had RF and ANA tests done too... These were off the scale at one point. The highest Ana Factor was 1:720 and that has now come down to nearer normal at 1 to 64. Have you had these tests done too?

 

[ButtterflyLady]

I think when you have a symptom like fatigue and a doctor says "there's nothing with you" they are saying that because they don't know what's wrong and they don't want to admit that.

I spent 10 years on this merry go round with ever increasingly heavy and painful periods and other symptoms. Finally, a new doctor mentioned endometriosis and this was proven with photos from surgery. I was lucky I had something that could be objectively proven, but also unlucky to have been told a variety of excuses for 10 long years.

I think there's a good chance that it can be discovered what is causing your fatigue. Those Icelandic doctors were onto something. The "normal range" of blood tests can be different around the world. If you have a deficiency in Iceland but not the UK, you have a deficiency. Normal ranges or "reference ranges" are arbitrary, and it takes a bit of common sense and an open mind to see that in some people, borderline can produce symptoms.

 

[ButtterflyLady]

Incidentally.. Adding to this.
I too was diagnosed with pernicious anaemia (b12 deficiency) and fibromyalgia and investigated further with my legs (EMG) tests for amyotrophy.

Long story and told many times here.. My pains have gone.. Pretty much all the time now.
I suffered for 20 years.

Mine was indeed due to chemicals.. But from an intolerance to sweeteners and aspartame. Ie diet coke, sugar free gum etc. (i never had a lot of the coke, but the gum I chewed daily).

I never had a lot of ready meals or takeaways or restaurant food etc but on odd occasions of house moves, no kitchens etc I ate them.

Anyhow.. There are no tests for intolerances to the additives. I eat no preservatives or E numbers or sweeteners at all now.

Recently I was informed that a consultant in 2003 had advised intolerance was likely for my pains. It got missed off my records and I wasn't informed until I asked for a full review and to see my records.

Since eating totally natural products.. My pains have gone. The only exception to this is tey come back immediately if I have perhaps been out for a meal and I cannot be 100% sure of its contents etc.

The other addition to this is that even my pernicious anaemia B12 injections stopped about 5 years ago when after living 6 months on pretty much ready meals (due to another house move)... We started eating proper food again...this I have only realised in last few weeks. My GP atthe time said that my levels had gone up and I didn't need B12 jabs. Again a long story, told often on here but once on B12jabs they are normally for life. Stopping those ready meals and reverting to my basic good cleaner eating must have eliminated my need for B12 jabs. At one point I was even paying privately to get infusions from an anaethetist in Wales...

Nowadays the only processed food I have is butter, milk and feta cheese.. Everything else is very much checked for any E numbers or any sweeteners etc.

It is hard to do this but it keeps me pretty much pain free. My sleep has improved in so far as I no longer sleep talk or have consustent numbness and pain whilst I sleep and I no longer have nightmares.

It maybe that you may have intolerances to either the chemicals that you worked with or foods. Certainly all my neuropathy, amyotrophy, b12, palindromic rheumatism, fibromyalgia were either negative test results or been removed as a current illness.

Incidentally as well.. I also had RF and ANA tests done too... These were off the scale at one point. The highest Ana Factor was 1:720 and that has now come down to nearer normal at 1 to 64. Have you had these tests done too?

It's very interesting. In addition to chemicals that we work with or foods, I think there is also research showing that our mother's exposure to environmental substances while she was pregnant with us can be a factor. Babies are more sensitive in this area than adults are.

 

[donnellysdogs]

It's very interesting. In addition to chemicals that we work with or foods, I think there is also research showing that our mother's exposure to environmental substances while she was pregnant with us can be a factor. Babies are more sensitive in this area than adults are.

Thats scarey!! I lnow that an area close to us had a lot of children with limb deformities and high rates of cancer too. Not the adults and this was blamed (by parents) upon environmental factors.

Years ago they used to talk about living near pylons.. I know it put us off buying a house 30 years ago.

 

[ButtterflyLady]

Thats scarey!! I lnow that an area close to us had a lot of children with limb deformities and high rates of cancer too. Not the adults and this was blamed (by parents) upon environmental factors.

Years ago they used to talk about living near pylons.. I know it put us off buying a house 30 years ago.

Yeah, not all environmental factors are dangerous though. Some people believe that running a power cable along the head of your bed can cause health problems, for example. I'm satisfied that it doesn't. A lot of the claims about these things don't hold up to scrutiny, but some of them are well-proven, like asbestos in building materials or DDT in sheep drench, for example. I think it pays to consider environmental factors and study them to see what the effects are, but also to remain reasonably skeptical so there isn't unnecessary anxiety.

I think with jshire's diagnostic puzzle there are several possible causes that need more investigation, even if that's just checking the existing blood test results. And I agree about the Vitamin D dose needing to be high enough for long enough to be able to see if that partly or fully fixes it.

 

[ButtterflyLady]

Thats scarey!! I lnow that an area close to us had a lot of children with limb deformities and high rates of cancer too. Not the adults and this was blamed (by parents) upon environmental factors.

Years ago they used to talk about living near pylons.. I know it put us off buying a house 30 years ago.

Yeah, not all environmental factors are dangerous though. Some people believe that running a power cable along the head of your bed can cause health problems, for example. I'm satisfied that it doesn't. A lot of the claims about these things don't hold up to scrutiny, but some of them are well-proven, like asbestos in building materials or DDT in sheep drench, for example. I think it pays to consider environmental factors and study them to see what the effects are, but also to remain reasonably skeptical so there isn't unnecessary anxiety.

I think with jshire's diagnostic puzzle there are several possible causes that need more investigation, even if that's just checking the existing blood test results. And I agree about the Vitamin D dose needing to be high enough for long enough to be able to see if that partly or fully fixes it.

 

[mrspuddleduck]

thanks Sue. I have been back to my gp with that kind of attitude - for the past 2 years. I've been told 'there's nothing wrong with you' or similar & i've had to say 'there **** well is !'. As for my diet - as I said its not a particularly unhealthy one - I just don't eat some of the regular stuff lots of folks do. I do eat veg & fruit etc. I could go into more detail about the emotional effect of all this & how it sometimes is hard to motivate myself to even bother cooking for myself but that would be a long story

Hi @jshire, believe me I totally get the emotional effect. The exhaustion and feeling unwell coupled with the feeling that you are getting no support is unbearable enough. But your emotions will be heavily influenced by the food stuff whether it's blood sugars, deficiencies or intolerances. So it can end up a bloody big downward spiral!! Many of us on here have definitely been there so please don't think you are on your own! It really does sound like its time you changed your GP, it actually doesn't matter any more how good or bad he is, once you have lost confidence in them its time for a change. Sue xx

 

[jshire]

thanks for all the replies - especially as i'm not currently (hopefully) diabetic !

In terms of my diet nothing changed there so whilst i'm sure as we age some aspects of the effect of ones diet change i'm more inclined to think there is another cause of what's been happening to me. Looking back I had occasional tingling in my lower legs perhaps for 3 or 4 years - often after i'd walked a fair bit more than everyday activity. For example if I went out for the day & walked around a town / city etc. Then a couple of years ago I went on a regular trip to Iceland (work) which involved carrying some equipment whilst walking & I found it very difficult. Around the same time I noticed the buzzing in my legs (quite vague sensations these - hard to describe) were more or less all the time. Since then its got worse & my fatigue is quite extreme. Most days I don't have the energy to go out or walk more that a couple of 100 metres, if that.

The only change to my diet in the last 6 years or so is that about 4 years ago I started to cut down on coca-cola. If it turns out this is all down to that I reckon Coca-cola will pay me quite a bit for my story

I'm giving changing docs some serious thought - might have one more visit to the one I have now to see if he'll be more responsive but.... I'm still waiting to hear about an appointment with a neurologist, though Peripheral Neuropathy also appears to be one of those things that often the diagnosis of is based on questions rather than investigation, especially when chemicals potentially could be the cause. Thats one aspect that's really frustrating - my doc, after I mentioned PN, latched onto it & said 'its probably that then' (nb. he's never mentioned B12 & Vit D having similar effects) & told me to totally stop using the chemicals - which basically means my giving up my main source of income. Of course i'd do that if it was the cause but he seemed to not consider that if I give it up without knowing & it turns out to be something else that'd be quite frustrating. Since I researched the PN / Chemical thing I have cut down on my work & also taken additional precautions (using smaller tins of the chemical, wearing proper face mask, increasing ventilation, reducing 'open tin' times to a couple of minutes etc.). I guess what i'm saying is that it is a bit annoying that my doc didn't investigate the various possible causes in what might have been a more sensible order, or indeed looked into some possible causes at all.

someone asked what the Icelandic doctor said: I can't remember fully but he basically said there wasn't anything serious to worry about. My liver had a bit of fat but they didn't term it 'fatty liver disease'. He suggested tests for hyperthyriod - which I mentioned to my doc when I got back to the UK & that was tested for - figures were high but then settled back to normal after a couple of months.

so, here's some results from my most recent blood tests that I have the sheets for:

plasma fasting level 5.1
serum sodium 140
serum potassium 4.8
serum chloride 104
serum bicarbonate 27
serum urea 3.9
serum creatinine 83
serum calcium 2.4
serum inorganic phosphate 0.68 (below average - previous test had been 0.56 - doc hasn't mentioned it on latest test which I don't have the sheets for)
serum bilirubin 21
serum alkaline phosphatase 84
serum alkaline aminotransferase 47 (above average - previous test had been 62 & again doc hasn't mentioned it since)
serum protein 76
serum albumin 42
serum c reactive protein 13.0 (above average - this hasn't been commented on by doc, then or since - the sheet says 'consistent with an acute phase response)
haemoglobin A1c 35

haemoglobin concentratio 155.0
white blood count 6.7
platelet count 161
red blood cell count 5.13
haematocrit 0.449
mean cell volume 87.5
mean cell haemoglobin 30.2
lymphocyte count 1.38

serum B12 187
serum folate 12.6 (deficiency)

These tests were in 2014 & since then i've had another 2 (I think) - the only communication from the doc has been a letter saying 'your results are returning to normal levels' - despite that my symptoms have been getting worse of course.

so, not sure if any of that helps but thanks again for the replies !

 

[ButtterflyLady]

What is the chemical you use in your work? It's good that you are taking good precautions now, but it's possible that previous exposure may have had ongoing effects.

The B12 and Folate jump out at me. CRP is ok... it's above normal but there can be so many reasons for this that it's really hard to know. Mine's been at least 7 for as long as I can remember. If you have a bad infection, it goes up to the hundreds, just to give a bit of context.

I haven't looked up all the others. Usually on my printouts the lab's reference range is next to each result, which makes it easier to understand the results.

One thing we don't know from those results is your iron levels - iron, ferritin, iron saturation etc.

You may not be diabetic but you are near the top of the normal range, and we want to help you prevent diabetes. I'm happy to help you in whatever way I can.

 

[rosserk]

Have you ever contacted the health and safety executive and asked if there are any other reported cases similar to yours? Also run through the safety precautions your company uses to check they meet the legal requirements? You should not be at risk from any harmful substances at your place of work. At the very least your concerns need to be documented with the Health and Safety Executive just in case there is a problem in the future.

 

[jshire]

What is the chemical you use in your work? It's good that you are taking good precautions now, but it's possible that previous exposure may have had ongoing effects.

The B12 and Folate jump out at me. CRP is ok... it's above normal but there can be so many reasons for this that it's really hard to know. Mine's been at least 7 for as long as I can remember. If you have a bad infection, it goes up to the hundreds, just to give a bit of context.

I haven't looked up all the others. Usually on my printouts the lab's reference range is next to each result, which makes it easier to understand the results.

One thing we don't know from those results is your iron levels - iron, ferritin, iron saturation etc.

You may not be diabetic but you are near the top of the normal range, and we want to help you prevent diabetes. I'm happy to help you in whatever way I can.

yes - the normal ranges are on my sheets also & i've mentioned any that were above or below normal. As for being near the top of the normal range for diabetes - again, my doctor didn't see any reason for concern there, but I certainly do as of course I want to decrease my risk of developing it.

 

[ButtterflyLady]

yes - the normal ranges are on my sheets also & i've mentioned any that were above or below normal. As for being near the top of the normal range for diabetes - again, my doctor didn't see any reason for concern there, but I certainly do as of course I want to decrease my risk of developing it.

Were any of the other results near either end of the reference range?

 

[jshire]

Have you ever contacted the health and safety executive and asked if there are any other reported cases similar to yours? Also run through the safety precautions your company uses to check they meet the legal requirements? You should not be at risk from any harmful substances at your place of work. At the very least your concerns need to be documented with the Health and Safety Executive just in case there is a problem in the future.

i'm self employed & I have done lots of research on the chemicals involved. They aren't nice ! & can cause various things inc. PN - though my exposure has been small. Problem is there is no way to diagnose anything as being caused by them unless as a result of sudden, major exposure (industrial accident etc). There is one specialist in the UK that tests for these chemicals & he has already said it would be impossible to diagnose & so I cannot be referred to him.

 

[jshire]

Were any of the other results near either end of the reference range?

not really - but as i'm not a doctor I wouldn't know how near to the reference limit is 'near' if you see what I mean.

 

[ButtterflyLady]

not really - but as i'm not a doctor I wouldn't know how near to the reference limit is 'near' if you see what I mean.

For example, if the reference range is 120-200, and lower is better, I would be concerned about anything over 185.
Or if the ref range is 400-900 and higher is better, then you'd want to be over 450.

 

[jshire]

For example, if the reference range is 120-200, and lower is better, I would be concerned about anything over 185.
Or if the ref range is 400-900 and higher is better, then you'd want to be over 450.

well, I have to admit I didn't go through each one & look up online whether its better to have a high or low level with each - I kind of thought my doctor would know that & spot anything worth mentioning !

 

[mrspuddleduck]

Serum folate deficiency - folic acid defiency can lead to depression, exhaustion and a range of neurological symptoms. It is normally found in green vegetables and cereals!!! Mmmmm looking hopeful but as I said before I'm no doctor! I would be back at that GPs like a shot!!!! Sue xxxx

 

[mrspuddleduck]

I'm guessing that your GP has ignored the folic acid defiency because it is normally something that is flagged in pregnant women because of foetal risk factors! But that doesn't mean the rest if the population can't get it, its just not high on the 'trendy illness' agenda!