Not diagnosed but worried!!

[Doofers]

I need some help and advice please. I started with loose motions some 7 months or so ago, last Nov. My little girl was having major health issues and I simply put it down to worry over her. However, my motions have remained very loose still to this day. Pardon the graphic description but I would describe it as like weetabix once soggy! Do not get formed stools anymore. I initially went to GP with some abscess on the breasts and then skin rashes. I been on all kinds of antibiotics but to no avail. I then noticed my legs etc were getting thin and changing shape. I have lost weight in past during divorce but nothing on this scale. I seem to have lost muscle as my entire body has lost its shape. I was always a healthy rounded 11 st but since Jan this year have now gone down to just over 8.5 stone. I have to sleep on pillows as my bony body gets red marks on if I lie on my mattress.

I recently changed GP as not got anywhere with the one I was with and beginning May moved to a new one who have started to look deeper into the matter. Here are all my symptoms:- drastic rapid weight loss, a feeling of numbness in hand and feet some days, like tingling, I feel my skin is on fire and tingling some days but not every day, tiny red dots have appeared all over my body, including my scalp, diarrhoea daily, terrible gurgling in my stomach and wind at both ends, extreme tiredness, feeling weaker day after day, skin rashes, awful pain under left rib which radiates into my middle back on same side. The weight loss is frightening as friends are noticing it on daily basis now, strange bruising area appeared on my lower right back. Painful under both armpits but I feel no lumps there. I have also recently developed a mild cough.

I have had full blood count, diabetes, thyroid, liver, kidney, iron etc tests and all came back normal. I then been referred to and had endoscopy and colonoscopy both of which were "normal". No swabs of inside stomach were taken all just based on what they saw with camera. Should they have done swabs in case some bacteria problem??? They simply referred me back to GP. The GP then ordered some more bloods to look for abnormalities and tumour marker whatever that all means. These showed a reading for my pancreas as raised, a reading of 97 (apparently 90 is the high end of normal range?) so they sent me for an ultrasound which I have had done this pm. I am even more scared since the ultrasound, the whole procedure today only took 10 mins. I asked the lady to really concentrate on where I was having the pain but she didn't. She said that she couldn't quite see the tail end of the pancreas but what she saw looked normal, along with other organs she could see. How can is be a thorough examination if she couldn't see the entire organ?? I also was sent for a chest x-ray but await results on this.

I don't know where I go from here!! I now have to go back to GP and start from scratch again I assume. I really feel a CT scan should be done. Should I push for this?? My weight continues to plummet and I am extremely concerned now. Please help.

[Dandygal76]

Hey Doofers, there are a mulitude of issues you have raised and I will respond more later but the 2 I can help with is that firstly if they do not quite get all the Pancreas with the ultrasound (which is often the case) then they should do a CT or MRI next. I would not walk away until you are sure that they have seen it all. My dads did not show up on ultrasound. If you have funds available you could get a scan of the pancreas for around £600 yourself but I know everyone is not so lucky to have that available. Your GP should though refer you next if you do not have it all on the ultrasound.

Secondly, with neuropathy type symptoms I would get some strong B vitamins and see if they help at all. The body does not always store them well and the UK measurements in blood levels for B12 can be subject to some debate as effectiveness. I completely cured tingling / burning with good quality high level vitamin B complex from amazon. I am not saying this will work for you but it is an easy thing to try and will take about 3 months before I noticed nerve damage repair.

Please try not to worry. Stress can play a huge part in these things and the markers being 97 can also be a range of different things and are not completely reliable. They can fluctuate for infections etc you would never even know you had and would go away on their own.

If you have a young child then I assume you are fairly young so the statistics work in your favour with almost all patients being over 45 and the average age being 72.

Hang in there, you will find your answers. You shouldn't be starting from scratch with your GP, you are just moving on to the next part of the jigsaw. Also, call the PCUK helpline on Monday. The nurses are lovely and will help you through your worries. x

[Doofers]

Hello Dandygal, and thanks for your advice, I am 43 yrs old, had my little one late in life bless. Xx I rang the helpline today and spoke to a lovely nurse called Chris. I was anxious about what a reading of 97 meant. I will go back to my GP on Monday and request a CT scan. I am prepared to pay private if I have to as I feel today's ultrasound wasn't thorough enough. Again thanks so much for your response xx

[BlacJAC]

First thing I'd do after the CT and it comes back clear is go through the process of being tested for celiac. The numerous specialists I've seen have all stated my symptoms, which are very similar to those of your own, are indicative of celiac or some other food intolerance. With dairy, eggs, wheat etc all being the main culprits.

Also from what I've been told, they can't thoroughly test you for a lot of food intolerances because there are no reliable tests. It's just a case of removing things from your diet. For celiac and if it does get discussed with you, you would have to go on a high gluten diet for around 6 weeks and then they'd take a sample via an endoscope. A lot of those tests can still come back negative even if people do indeed have it. It's very important you don't omit anything from your diet because that's one of the worst things you can do when looking for a diagnosis.

Out of interest, have you got black bags under your eyes. That is a tell tale sign of an intolerance. Don't go wasting your cash buying those home tests.

Going purely on my own bloods, they fluctuate constantly. Only once did one of my pancreas markers come back out of the normal range. I think it was my amylase that came back at 20. That's on the low side, however, it was mentioned that lots of healthy people's readings come back with slightly low and high levels. Your count is still within normal if what you say is true regarding that particular count. Blood counts are done on averages and 'normal' only accounts for the larger percentage of the population, not everyone. Some people have naturally lower and higher counts. Some counts even fluctuate between labs.

[Doofers]

Hi BlacJac thanks for your reply. I do have black bags but put that down to constant fatigue my first symptom I noticed. I have been back to my GP Monday and my chest x Ray is clear thank goodness. He sending me for pancreatic CT next as they indeed confirmed they couldn't see the entire organ. Unfortunately, they discovered at this appointment that I also have a "mass" he called it behind each nipple, I complained of itchy nipples. I am awaiting a mammogram now too. This is so worrying and all the wait g is making me feel sick.