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Need advice as very worried


jict
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Hi there and I hope I'm posting in the right board as I need advice on what to do next.


My problems all started back in April of last year when I noticed 2 fingers on my left hand ( pinkie and one next to it )had an occasional numb feeling and sometimes tingling. It comes and goes so didn't think much of it. This was followed by a cough which took a while to clear up but did eventually. Nothing much there as otherwise felt fine but a little achy now and again.


Then onto May and ended up with an eye problem with floaters appearing and a flashing light occasionally - also happened when I was coughing the month before. Saw an ophthalmologist who said it was a partial vitreous detachment but nothing too serious and was really just down to age - I'm only 60 so not that old! Ended up missing my holiday due to this unfortunately. Told I have to live with it.


Things have gone downhill steadily from there. I saw my GP in May and told him about generally not feeling well but nothing specific other than being very tired and general aches and pains. He asked if I had lost weight in the last 4 months which I hadn't but had lost around 5 or 6 lbs in the 2nd half of 2015 although hadn't been trying to specifically. I did say that I had retired at the end of 2014 and it may simply have been down to a change in eating habits but that I wasn't sure. He took my weight in May 2016 and that has stayed the same throughout the whole of 2016. He then ordered blood tests which all came back fine and suggested I contact the physio department as he felt the tingling fingers was a nerve issue. Lost my appetite on the day I got the blood tests back.


I saw him again a couple of weeks later as I had an ache under my left rib cage again. I say again as this was investigated 5 years ago with an ultrasound and an endoscopy which were both clear. Everyone was convinced it was just a nerve issue and it did seem to settle down. So this appeared to be a flare up again. I had another ultrasound and again all was clear. Attended pyhsio but she couldn't get to the bottom of the tingling fingers and said there was nothing more she could do. GP also said he felt there was nothing more to do, giving me the impression he felt there was nothing wrong with me.


Roll on to August and still not feeling any better and due to visit Canada to stay with family. Saw a different GP and explained that I was concerned particularly with leukemia - a lot of the symptoms fitted. Also told her that I now had Tinnitus in one ear since July. She said she would refer me to ENT for the Tinnitus and to Dermatology for the tingling fingers. She also did a blood test and checked B12 and Vit D levels. All came back as normal and she cleared me to go to Canada. I still had little appetite and felt light headed at times. I went to Canada but had to return early as I was convinced something was seriously wrong.


ENT visit eventually came and they did an MRI which was normal. Dermatology has still never happened.


Saw my GP again in September where we considered anti depressants but I chose not to take them as I really wasn't convinced. Saw her again in October as I was still having stomach issue - at times the ache under the left rib cage and also sometimes under the right rib cage. I also told her that I had an ache in my upper back and sometimes behind my sternum. At times I was burping too. She decided to try omezrapole to see if it would settle things.


The omezrapole seemed to help with the burping a bit and my appetite seemed to improve too. Saw her again after a month and she said she would prescribe more and to take them as necessary but to come back if it was all the time. Tried not to take them but was still getting symptoms so seemed to be taking them again most days although not entirely sure they were helping. I went back again and she said it would probably be best to refer me for an endoscope again. I have now been given an appointment for 20th March!


Since then my symptoms seem to be getting worse. I am eating but more because I know I have to rather than because I want to - this is not me as I normally love my food. I have also developed upper chest pains - at one point it felt like a heart attack and seemed to be going down my left arm too. Still also have upper back pain and pain in my back behind the left rib cage - more or less in the same area as the pain in my front.


Stools - certainly for all the time this has been going on they seem to be loose but not diahorrea. Colour is normal, not pale. They tend to be in smaller pieces rather than one complete sausage shape. They tend to float initially but do sink after a few minutes.

There's no unusual smell.


Recently noticed I get a bit cold and shivery before my main meal but haven't as yet asked the GP - diabetes? Eyesight seems more blurry but only close vision and using glasses are ok but it does seem worse than it was earlier in the year.


A lot of my symptoms seem to point to Pancreatic Cancer and I'm now terrified. I don't know if I'm worrying myself to the point of imagining symptoms. My GP doesn't see any red flag markers as I'm not being sick, I don't have any lumps in my throat and most importantly I've not lost weight in a year. She said she would try to get the endoscopy brought forward.


Am I worrying needlessly or is there something to pursue and how do I go about it as the GP obviously doesn't think there is a big problem?

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You hit a raw nerve here I am afraid. I do not agree in this country regarding their B12 deficiency diagnosis. As with anything with NICE, they set the bar at averages and to their own cost / benefit analysis. I suffered years of peripheral neuropathy and nerve problems that they said they could nothing for whilst my B12 levels were on the lower of normal range. I researched myself, took up exercise and took large scale B vitamins ( you can overdose on a couple of b vitamins so be careful). I take normal levels now but I would go with my dads B vitamins that I researched which is in my thread somewhere but I will find and post. It took about 3 months but I have recommended this to others and seen great results. You are not average, you are you. I cured myself and I was at debilitating levels. B12 deficiency would effect your optic nerve as well. It is a cheap, no side effect, can't overdose option.. nothing to lose in trying. Bear in mind it takes a few months for your nerves to regenerate. Why don't you get your B12 levels from the doctor and research yourself? I think from memory it is Australia that measure it differently.


Also, as far as I am aware numbness and pins and needles in the area you suggest should be under a neurologist. I have always seen a neurologist. I have no idea why it would be otherwise but it may be worth an ask. I have had full body MRI due to neuropathy and numbness to check fo things like Multiple Sclerosis. I still think I recognise B12 issues though...


http://www.webmd.com/food-recipes/guide/vitamin-b12-deficiency-symptoms-causes#2


xx

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Hi jlct,


I'm sorry you are having a difficult time. There seem to be quite a few things going on that may or may not be connected.


You retired so are having to get used to a different lifestyle, you have numbness in your fingers which could be neurological or circulatory, eye problems, back and chest pain some of which moves around, some minor bowel disturbance, and you have lost your appetite.


How has your life changed since you retired? Do you exercise more or less, do you have more or less active social life, how has your diet changed since you retired if at all, how do you spend your time now? These are questions you might think about to see if there is an explanation for the way you feel and what may be causing it. The mind too is a very powerful thing and can be responsible for physical symptoms especially if you are having to cope with major changes in your life.


When you look at the list PC is not the first thing that jumps out at you but there is no 'normal' for PC just some more common symptoms. Weight loss being a big one but 5 or 6 lbs over a significant period is not out of the way and so many bowel and digestive issues could cause weight loss. Of course there is always a chance that a group of what appear random symptoms could be an indicator of something more serious so you are right to seek advice.


Unfortunately as we age bits of us start to malfunction and often things seem to come in succession, usually when we are in low water. It's good that someone is checking Vit D etc as everyone in the UK is advised by NHS England to take 25mg of vit D per day just because we live in the Northern hemisphere! DG is also right that vit B can make a difference but that it is possible to cause harm by taking supplements that are not needed. Sadly we have to accept that our bodies age and that we start to show symptoms of wear and tear around this age which makes diagnosis very difficult.


Have you thought about a food diary? Keeping a note of what you are eating and when, including notes on the resulting pain and/or bowel habit can be a helpful diagnostic especially if you also keep notes on how you feel physically and emotionally as well. It would give you something to discuss with the GP and help you both agree next steps.


Although Ultrasound and other investigations are common the best diagnostic for PC would be a PET (contrast CT) scan. I'm not sure that you hit the criteria for this investigation on the NHS but they can be obtained privately and your doctor may be able to advise if this is worthwhile and who to go to.


I'm sorry I can't be of more help as I don't want to dismiss your concerns but I would try not to scour the internet if you can help it as it is a bit like reading a medical dictionary, you end up with every symptom in the book. If you don't have confidence in your GPs conclusions you can change GPs or ask for a second opinion, no one will be offended, it happens all the time.


I hope you start to feel better soon, Marmalade

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Dandygal76 wrote:

> You hit a raw nerve here I am afraid. I do not agree in this country

> regarding their B12 deficiency diagnosis. As with anything with NICE, they

> set the bar at averages and to their own cost / benefit analysis. I

> suffered years of peripheral neuropathy and nerve problems that they said

> they could nothing for whilst my B12 levels were on the lower of normal

> range. I researched myself, took up exercise and took large scale B

> vitamins ( you can overdose on a couple of b vitamins so be careful). I

> take normal levels now but I would go with my dads B vitamins that I

> researched which is in my thread somewhere but I will find and post. It

> took about 3 months but I have recommended this to others and seen great

> results. You are not average, you are you. I cured myself and I was at

> debilitating levels. B12 deficiency would effect your optic nerve as well.

> It is a cheap, no side effect, can't overdose option.. nothing to lose in

> trying. Bear in mind it takes a few months for your nerves to regenerate.

> Why don't you get your B12 levels from the doctor and research yourself? I

> think from memory it is Australia that measure it differently.

>

> Also, as far as I am aware numbness and pins and needles in the area you

> suggest should be under a neurologist. I have always seen a neurologist.

> I have no idea why it would be otherwise but it may be worth an ask. I have

> had full body MRI due to neuropathy and numbness to check fo things like

> Multiple Sclerosis. I still think I recognise B12 issues though...

>

>

> http://www.webmd.com/food-recipes/guide/vitamin-b12-deficiency-symptoms-causes#2

>

> xx


Dandygal - thanks. I have suspicions about B12 too as a lot of the symptoms seemed to fit but having been told all was normal I had discounted that. Doing a bit of research seems to suggest that the natural variety is better - would you agree? Is there any risk to trying?

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Marmalade - thank you for your reply.


I would agree with your questions on my retirement. I've done much the same thinking. The first year I was quite busy with decorating and holidays. However not so much going on this year and my two aborted holidays didn't help matters at all.


Exercise - probably less.


Social life - probably similar but should really be more.


At times I do feel I'm not doing enough and need to get involved in more. This may well be leading to feeling down but the more I feel bad, the less I do or want to do. a bit of a vicious circle really.


Mostly though I just have this idea that something is seriously wrong - may be totally stupid but can't get it out of my head.


Ideally I would like a scan that rules out all serious cancer issues in one go so I can get my life back on track. I can't make holiday plans whilst these tests are going on as it will be an insurance problem. I have no idea whether or not such a scan exists.


My thoughts keep coming back to the unexplained weight loss which is now over a year ago. If this was something serious would I have continued to lose weight? The doctor seems to think so which is why she's not concerned.


I do have faith in this GP - she is trying and has ordered the various tests and referrals. My issue is with the amount of time each one takes and that there is still no diagnosis after 9 months.

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This is my best researched B vitamins that is bioavailable to the body.


http://www.metabolics.com/b-complex-liquid.html#first


It is a strong complex so stick exactly to the instructions (14 drops a day I think) but if it is a b deficiency then this would do the trick unless you have an absorption issue - it worked for me though. The beauty of doing drops is that if it works you can slowly try reducing by a drop a day until you find your own optimum level. If not then do consider an absorption issue and ask to try injections (they are dirt cheap for the dr to do or go to a private GP - I think it is one injection every 3 months). I am not saying this is a cure for you and your issues, I am no doctor, but it is such a simple thing to try and your symptoms do seem much closer to this than pancreatic cancer.


The only negative thing I have ever had from B vitamins is what they call a niacin flush. It is terrifying if it happens (and you are not aware it can happen) but completely harmless and it will stop when you are used to it. If you start half dose and build up you will not get this at all.


Obviously this is all my own personal advice and experience. I really believe you have nothing to lose in trying this at all and I would be very interested in the outcomes if it does work for you so please do let me know. I am sure you are seeing from your own research now that people have great results when our drs say no and that other countries have much lower thresholds for treatment. x

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In addition - I just read your message to Marmalade - yes scans exist. If you have the money you can have a full body MRI scan for around £1500. A specific area CT scan is around £600. There are loads of places you can go... InHealth (used by NHS), Vista Diagnostics, Alliance medical. My dad just went for a private MRI and PET CT at the Wellington hospital in London and they were very good value and very quick turnaround as well. Shop around though.. when I inquired at Harley Street for the same service as Wellington (same company as well) - they were a 1/3 more expensive and much slower reporting times (paying for the name!). You need a referral (you cannot just refer yourself) so just pop back to your GP and tell them if you want to do this and why and they will refer you and tell the place exactly what scan you need and where. As you like your GP it sounds like the prefect place to start. I doubt she will say no - the only reason she is not referring you now is because they have to follow a set protocol for the NHS before they can. x

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Quick reply on the subject of weight loss. A weight loss of the size you describe followed by a year of stable weight seems unlikely to be significant given the nature of PC where the tumour in the prancreas interferes with normal digestion.


M

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Dandygal - thank you for the info on B12 and also the scans. I will look into both and ask the GP if it's something I could do.


Scan wise - as it seems to be a mixture of things like stomach, bowel and PC worries will a full MRI for example cover all of that? Or basically does the stomach and bowel require the endoscopy and colonoscopy as it seems an ultrasound can't see inside. If there was one scan that can rule everything serious out then that's what I would rather go with.

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Marmalade - thank you. That is very reassuring with regards to weight as I always seem to go back to the weight loss when I try to convince myself that all is fine.

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If you want one scan to rule out everything (nothing is a dead cert though) then I would go for a full MRI. An ultrasound is a poor relative in comparison and the MRI should cover the other 2 options. Your dr will really be best though to say what scan is most suitable. Re weight loss... don't underestimate the power of stress with this issue.


Out of interest.. have you phoned the PCUK nurses? It would be really good for you if you can do that, I have never met a person who regretted it. x

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The issue with the weight loss is that it predated all of these problems and was at a time when I had no issues and no reason to lose it. However that was at least a year ago and has been more or less the same for the whole of 2016.

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My own weight can fluctuate more than that, it depends on the level of activity, changes in diet, what I've been drinking ( some foods and drinks are mildly diuretic) and so on. .


M

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Marmalade - thanks. My weight may fluctuate too but never as much as 5/6lbs. In the big scheme of things it's probably not a lot but it's been many years since I was as light as 9 stones.


One other strange symptom I've noticed is that a single glass of wine can turn my face red - that never happened before all this started. I did mention it to the doctor and got the usual can happen with age reply. Everything seems to be my age these days!

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W&M - thanks. Yes I am a bit wary of that too.


I just know I can't go on like this. It is making me depressed but whether the symptoms are down to being depressed is another matter. It's difficult to believe everything I feel is down to depression.

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There are some tumours, carcinoids, that often present with vague symptoms and sometimes the tumours release hormones with high levels of serotonin that can cause flushing, tummy disturbances chest pains and other symptoms depending on where they are in the body but they are very rare. You should mention the flushing to your doctor if you haven't already and discuss the possibility of testing for carcinoids if appropriate. It might be helpful to chat with the nurses on here as they may be able to exclude this likelihood or advise on what information you need to give the doctor and what questions to ask. I would urge you to stay open minded at this stage as it is easy to make yourself ill worrying.


You say that you are not sure depression can cause these symptoms but depression and other mental health issues can cause a whole host of physical symptoms and mental health issues affect 1 in 3 people so they are not easy to rule out. So much depends on what else is going on in your life and physiology.


Best wishes,


Marmalade

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Thanks for that info.


I did indeed mention the flushing a while back and literally got told it was my age. It doesn't happen every time but is more likely to happen than not.

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Hi Jlct,


I would mention it again and say that you would like him/her to test for carcinoids, they can do a urine test although it would only show if the hormone syndrome had developed not if you had a tumour.


It may well be your age, its quite common but it may not so why not make certain, is the line I would take. They can usually tell from blood tests whether or not you have completed the menopause or where you are with it, so if they have not done so he/she needs to look at that too. It may reassure you to know what is going on.


Good luck,


M

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I went through the menopause quite a few years ago so would be pretty sure it had completed. Always felt my hormone levels have not been great since. Thinning hair being one issue for me.


What is the connection between the menopause being completed and checking for carcinoids?

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No connection at all but one or the other or both might explain some, or all of the symptoms particularly the flushes we were talking about.


Because some menopausal symptoms disappear does not always mean it's over, it goes on for years and you are right, you never feel the same again. Your body has done what it was designed for so many of the hormones are not not produced at the same levels and you will feel different. Lots of other changes occur that can affect your joints and general health and wellbeing, no doubt that is why your doctor checked your bloods for things like Vit D deficiency, thyroid deficiency or over production and so on. I don't know what they tested for but I'm guessing both of those were on the list along with some others. Make sure you know what was tested and what the results mean


I had no idea about thyroid issues until a pain in my feet was so bad I couldn't stand up in the morning and I would crawl to the bathroom, my doctor was dismissive and told me to lose weight….she did however do the bloods and was very apologetic when it was found I had a very under active thyroid so it was, as I had said, almost impossible to lose weight because my metabolism was so slow I was nearly dead! That one hormone alone regulates 73 different body functions! That's why you should keep an open mind and not automatically assume cancer, cancer is not the only serious condition never mind all the minor ones.


Keep going back if you feel unwell and be fair but firm. Whatever the cause of your symptoms you need help with them and a proper investigation with which you feel engaged


M

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Marmalade - thank you once again.


I saw my GP this morning. She listened and took time to go over things with me although perhaps a mixed bag of results.


Blood test - she went through all the results with me and said liver, kidney functions were all fine. White cell and red cell count etc all fine. She said there was no specific markers indicating any issue anywhere.


B12 - I asked her about levels. She said anything between 200 and 900 is considered normal and mine was 524 in late August so she has no issue with that. I have no idea if that is correct or not.


Thyroid - only read your reply after I had seen the GP unfortunately so hadn't asked about that. I had asked before though and seem to remember her telling me it was ok - she did feel around the thyroid area. Do I need a specific test or does this show up in a normal blood test?


Diabetes - asked her about that but she said the blood test would have shown any issue. Mainly asked her because at times I feel my lips are dry and sometimes go frequently in the evenings.


I then asked her about the alcohol red face and whether it could be any other issue. Should have come right out with testing for carcinoids but felt a bit uncomfortable doing so. I did say that I had been told about a high level of serotonin causing the flushing and she said she had never heard of that in her 16 years as a doctor. She did say she would research it for me though so I'll give her a chance to do that.


Endoscopy - she's going to chase up her gastro contact so still hope there. Also chasing up why I haven't had an orthopaedics appointment yet as it's now over 4 months and she thought I should have heard by now. This was for the tingling fingers.


Generally she feels I am over anxious just now about my health and she's right there. She has asked if I would be willing to try the anti depressants for a bit to see if they help. If they don't help or make things worse we can change course. I said that the biggest problem is all the waits in between investigations as it's basically put my life on hold. Can't arrange any holidays etc.


So I need to give her a chance but how long is the question. I'm trying not to dwell too much on this as it isn't helping really.

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Perhaps you could drop a note into the surgery saying that you have looked up flushing and seratonin on the net and wonder if it is worth testing for this just in case, .then enclose a print of the Cancer Research page on carcinoid syndrome Also, speak to the nurses on here, they are very reassuring but not dismissive. This is very rare though so don't get it out of proportion.


Thyroid, you would need a blood test. She may have asked the lab to check for this in the past but you need to ask. Don't worry about asking or even making notes, they don't mind or even better ask for printouts and file them.


Might you try the anti depressants for a little while? Can't see as it would do any harm and might help get you through this trough which happens to most of us at some point.


You are right, over analysing just makes things worse so plan in some diversions, trace your family history or visit an exhibition or anything at intervals so you are not sitting and waiting all the time. Give your doctor a week and then phone and ask the surgery if the doctor could call you as a follow up to your previous appointment - just a suggestion.


M

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