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BlacJAC
Posts: 48
Joined: Thu Oct 29, 2015 8:14 pm

Re: Please help me, scared witless

Postby BlacJAC » Thu Dec 03, 2015 11:56 am

An update on my situation. Today I had an upper abdominal US and a camera US down my throat (did not know I was getting this, thus was a bit shocked/freaked when I was told upon my arrival at hospital) and I'm pleased to say my pancreas, gallbladder and liver are all normal as are all the ducts.

As for the camera, I suspect the GP never told me about this due to my high anxiety levels, but it's done now and out of the way. Truth be told, I'm glad I did get this because there would probably have still been a little niggling doubt. So congrats to my GP for sneaking this in. I was actually wondering why they told me i may have to spend a few hours under observation afterwards in the letter. I feel really queasy and no idea if that's normal or if it's the drugs. Feels like i still have something stuck in my throat too.

The right sided tenderness is referred pain coming from my thoracic spine. Didn't even know i had a very tender spine until the GI doctor prodded it. I just about jumped off the table. It was that sore. He said as much as liver/gallbladder/pancreas pain can go through to the back, spine problems can got through to the front. Works both ways. My back issues have always been lower back, so didn't even consider it was my spine. It's not even that tender when i touch or press it, but really hurt when the doctor did it.

The GI specialist I saw has said he's almost certain my pale stools and fat intolerance are one of 3 things or a combination of the 3:

Thyroid
Celiac disease
Food intolerance

He's more leaning towards an autoimmune thyroid issue because my mum and my mum's sister both have thyroid issues. My mum under-active and my aunt (mum's sister) who started out with an under-active one now has an overactive one - suggestive of an autoimmune issue. The same aunt also has pernicious anemia. Coupled with my alopecia is suggestive of that being the issue. It was also noted I had a racing pulse, a slight tremor in my hands and together with the weight loss backs this up. He said thyroid issues can and do cause steatorrhoea or very similar symptoms to what I'm having. So I've to get that checked next. Had 3 bloods and nothing was said about my thyroid, so not sure if there's a specific blood test for that. One thing for sure, I won't be googling it. If that all comes up clear, I've to get a camera up the other end, but he wants to leave the evasive procedures until last as I just got the one down my throat today.

About my alopecia, I have had that since the death of my dad 15 years ago and my hair has started to grow back for the first time in 15 years since i changed my diet. All very weird, but a pleasant side effect.

Before i tie this up I want to say 2 things - A massive, massive thank you to everyone who replied and to extend that to the nurses who took the time out of their schedule to put my mind at ease. It was massively appreciated and helped me a lot and the advice I was given about the diary, laxatives and diet were invaluable. It saved me going into hospital with little or no background information to pass onto the doctor.

Secondly, I hope at least one person takes from this post that diagnosing yourself via Google never ends happily. About 99% of my anxiety came from this. It always ends at having pancreatic cancer. Tells you what could be wrong, not WHAT is wrong.

With the permission of the mods, I would like to be able to come back on here and post an update when or if they get to the root of the issue. If anything, for others in a similar position to myself that find themselves here not knowing what they could potentiality be dealing with.

PCUK Nurse Jeni
Posts: 958
Joined: Mon Jun 14, 2010 12:30 pm

Re: Please help me, scared witless

Postby PCUK Nurse Jeni » Fri Dec 04, 2015 12:20 pm

Hi BlacJac,

Nice to hear from you again! And thank you for updating the forum about your case.

Oh, thats was a bit if a surprise all-right. Yes, probably should have told you really about this, did you not have to fast from food? Maybe they had already told you this for the ultrasound anyhow. You did very well to tolerate this- it is not a very pleasant investigation at all, but a good one, as they can have a good look, and take tissue samples if needed as well.

You might very well experience a sore throat over the next day or two. I had a similar investigation myself, and the sore throat was delayed, but rest assured, it does go away almost as quick as it comes - its just unpleasant at the time.

Thats interesting about your spine - are they going to investigate this, or do they know why this is tender? Any causes? Have you injured it or hurt it lately?

Well, that is very interesting about thyroid disease causing steatorrhoea! I knew the other two could cause this, but I did not know, I must say, that thyroid issues could cause this, so thank you very much for pointing this out. I have looked it up, and indeed, it is true. So, thanks for letting us know this as it is good to share information like this, which can benefit us all.

The bloods - it might not say the word "thyroid" - it might just say something like "TSH" - which is thyroid function. So, don't worry.

Thats fantastic news about your hair regrowing - you must feel incredibly proud of yourself for making those lifestyle changes and seeing the benefit of them in your general health, and thats nothing to what the long term benefits will be! Keep up the good work!

I think your comments about Googling to diagnose yourself are very, very apt, and very welcome Blacjac. Thank you for such sound advice. You are exactly right.

And of course its fine for you to come back on here to give updates - like I said, its sharing information, and you already shared something I wasn't aware of, so this is helpful.

Take care Blacjac, and have a wonderful, anxiety -"less" Christmas!

Jeni, Support Team.

BlacJAC
Posts: 48
Joined: Thu Oct 29, 2015 8:14 pm

Re: Please help me, scared witless

Postby BlacJAC » Fri Dec 04, 2015 4:05 pm

Hi Jeni,

The back pain is bad posture or lack of. I had a very bad episode with my lower back a month or 2 before any of this began and I was in bed for 3 weeks. I had 3 pillows so i could sit up (hunched over) and was twisted to the side using the laptop in my bed. Looking back I was putting that area under a lot of strain. When I have a back episode, I can barely walk due to the severe spasms, so lying down to allow the worst to pass for a week or two is my only option. Luckily, my back doesn't really cause pain when lying down. Sitting and walking is what causes my back the most pain when it plays up.

I've been given 50mg Diclofenac for the upper back pain and to ask my GP about physio. I had taken Ibuprofen about 3 weeks ago for around 2 days and that got rid of the upper abdominal pain for a week or 2. If it gets worse or keeps being an issue, then I've to get an MRI to see if there's a disc issue.

I've got a sore throat today. All yesterday i felt like i had something stuck in my windpipe. Wasn't pleasant. The letter said I was to eat my last meal around 8pm and not drink any fluids 4 hours prior to the appointment and that someone was to drive me home. I feel stupid for not sussing this was going to be more than a normal US due to all the info on the letter. The letter heading was also something like "Full upper external and internal abdominal GI US". Not the exact description as i no longer have the letter. So aye, i feel daft.

I think my GP didn't tell me because she knew I'd probably worry more. I could always have refused it and whilst not everyone will agree going into an appointment blind sided, I think it was the right call for me because I would have probably not have turned up. I was there and had little time to think about it. I only knew about it when the nurse was taking me through and asked if I had any allergies to certain meds. I told her I was only coming for a US, not an op or CT scan. She looked at me in a baffled sort of way and then said I was down for a whatever it's called too(not her exact words). I think she thought for a moment that she had the wrong patient and I was thinking the same too. But the doctor turned up with all my details and said I down for both procedures. He showed me the referral.

I admit i did panic during the external abdominal US a little as he kinda stopped over my tummy/pancreas area and spent what seemed like an age there. Said all looked fine on the first examination. Said he'd do the entire upper GI 3 times just to make sure he didn't miss anything and 3 times again lying on my left so he could see my back and sides. People can say what they like about the NHS, but i felt I got a thorough going over and nothing was rushed.

PCUK Nurse Jeni
Posts: 958
Joined: Mon Jun 14, 2010 12:30 pm

Re: Please help me, scared witless

Postby PCUK Nurse Jeni » Mon Dec 07, 2015 10:51 am

Hi BlacJac,

Thats excellent news that you had a thorough examination as well as the gastroscopy.

You did really well having this at short notice! They are not the easiest of things to have.

Hopefully, your sore throat has disappeared over the weekend, and you are back to normal. And yes, I agree having had the experience, not pleasant, but thankfully, short lasting which is a good thing.

Hopefully, your back will settle down as well, and it will make for a pleasant Christmas for you BlacJac. And don't worry about not having "sussed" it! As you say, probably the better call for you at that time.

Take care, and enjoy Christmas.

Jeni.

BlacJAC
Posts: 48
Joined: Thu Oct 29, 2015 8:14 pm

Re: Please help me, scared witless

Postby BlacJAC » Tue Dec 08, 2015 11:55 am

Just had my GP contact me and on the recommendation of the GI specialist, she's going to refer me for a CT scan with contrast after Christmas. Whilst both tests came back normal, the GI doctor thinks it would be wise just to cover all bases with the pancreas. It was stated both the US and the endoscopy got good clear views of the pancreas and ducts, but he's stated they don't always tell the entire story.

Because I've had this fat intolerance thing for a good number of years, he's reviewed my MRI scans after i left, which I had redone just under a year ago for my back (which also covered my liver and pancreas) and he said everything looks "grossly normal", so no need for another MRI. What does "grossly normal" even mean? I've always considered something that's gross to be hideous, not right, not normal etc. Or maybe that's just my lack of education showing through and thus reading too much into it.

A little bit freaked out again. Why if everything is looking normal does he want a CT? It's probably paranoia, but I've got it in my head that maybe he has spotted something and doesn't want to unduly scare me - not worked. I thought this was the end of it all. Now got this. I admit, i was still under the influence of the sedatives when he spoke to me about his findings, so maybe he did mention it and I just never remembered.

Another thing he's suggested is depending on the CT results, it may be an idea to get a bile flow scan. What's a bile flow scan?

Keith

Didge
Posts: 794
Joined: Sun Dec 29, 2013 10:35 am

Re: Please help me, scared witless

Postby Didge » Tue Dec 08, 2015 12:52 pm

'grossly normal' is just a doctor joke I am sure. Because they are looking for abnormalities and have not found any. Any tests you have will be to try to find anything which could be causing symptoms or to rule things out. If your years of fat malabsorption had been related to pancreatic cancer, unless it was a v slow and benign type, you would have known a v long time ago. Have a good Christmas and try not to worry about anything!

PCUK Nurse Jeni
Posts: 958
Joined: Mon Jun 14, 2010 12:30 pm

Re: Please help me, scared witless

Postby PCUK Nurse Jeni » Tue Dec 08, 2015 5:23 pm

Hi Blacjac,

Agree with Didge. Its just a "belt and braces" thing - this should bring you relief that they are doing something, not worry.

Bile is also involved in the digestion of fats - they break fat molecules down to smaller fat molecules so that pancreatic enzymes can act on them. Bile is stored in the gallbladder, and is released via the common bile duct into the duodenum during digestion. If there is an issue with the flow of this, then this could lead to steatorrhoea as well, as fat would not be broken down efficiently enough.

Its as simple as this, nothing to worry about - the flow might just be abnormal, or caught up somewhere, or not flowing into the right place for some reason.

Don't be worrying BlacJac! It won't change anything, and might even make physical things worse.
KR,

Jeni.

BlacJAC
Posts: 48
Joined: Thu Oct 29, 2015 8:14 pm

Re: Please help me, scared witless

Postby BlacJAC » Wed Dec 09, 2015 10:26 am

Thanks once again for making me see sense over this.

Didge, whilst I've been unable to tolerate fats for some years, my upper right abdominal pain, pale stools and some of the food intolerance have been a recent thing. For example, i can't eat some rich white fish and tuna that has been soaked in sunflower oil as the next day my bowels are rolling (not sore, just bad non painful spasms) and I pass orange oil. Gross I know, but it's exactly like that oil you get on spag bol. I just don't eat any fish now. Can't eat milk chocolate at all now too. Had some galaxy the other day and an hour later i was sat on the loo. It was the same last week when i had some. It's like i've suddenly just become intolerant to a lot of foods and certain drinks. Coffee being the worst. Have drank that for years without any issues.

May i ask what a bile flow scan is? What's involved?

PCUK Nurse Jeni
Posts: 958
Joined: Mon Jun 14, 2010 12:30 pm

Re: Please help me, scared witless

Postby PCUK Nurse Jeni » Wed Dec 09, 2015 10:53 am

Good morning BlacJac,

Here is a good explanation of what the Bile Flow Scan is - also known as a HIDA scan. The site is American, but its very clear and simple to understand, and gives a comprehensive explanation of it.

http://floydmemorial.com/diagnostic-ima ... hida-scan/

Kind regards,


Jeni.

BlacJAC
Posts: 48
Joined: Thu Oct 29, 2015 8:14 pm

Re: Please help me, scared witless

Postby BlacJAC » Thu Dec 10, 2015 9:50 am

Very appreciated, Jeni. Thanks.

Got my 1st Celiac test in today and it came back negative. My GP has asked me to increase my gluten intake again and she'll do another test just before Christmas. Was taking the recommended amount for weeks before the test. I'll get 3 blood tests for this because a large number of initial tests come back negative. Silly they didn't take a sample when they were down my throat because if one did come back positive I'm assuming I'll have to go through that procedure again for a biopsy.

BlacJAC
Posts: 48
Joined: Thu Oct 29, 2015 8:14 pm

Re: Please help me, scared witless

Postby BlacJAC » Sat Dec 19, 2015 2:17 pm

Just a small update. Well, where to begin ...

A few days after posting my last post, a pea sized lump appeared just above my left collar bone and when my gp felt it she immediately uttered the words "Not good". Not googled anything as i promised myself I wouldn't so I could be wrong with the terminology here, but she said the area is commonly referred to as the Virches window - is that correct? That it drains from the gastric chain of nodes. It's not from the stomach anyway as i just had a camera down there recently, and that was all fine. I was immediately sent for a chest xray the same day and my lungs are clear as is everything else.

I'm past worrying about all this now. I just want a diagnosis one way or another. I'm booked into have the node removed on Tuesday next week as she said FNA's (think that's the term) rarely pick anything up.

Because the Xray is clear, she said there's a possibility it could be lymphoma. Can lymphoma cause issues with the pancreas? Pretty sure when i was reading all the rubbish on the net it said the pancreas was a gland, but not sure if it's the same sort of gland as the lymph system or not.

Not been itchy, not had any night sweats, coughs and so on. Bloods are also all fine because i had yet another damn one last week. Feeling like a pin cushion now. All inflammation markers are normal. My Vit B is ever so slightly on the low side.

Didge
Posts: 794
Joined: Sun Dec 29, 2013 10:35 am

Re: My convoluted diagnostic thread

Postby Didge » Tue Dec 22, 2015 8:23 am

Just wanted to say hope all goes well with the removal of the nodule today and you have a diagnosis of what is wrong soon. Didge x

PCUK Nurse Rachel
Posts: 53
Joined: Wed Jan 14, 2015 4:25 pm

Re: My convoluted diagnostic thread

Postby PCUK Nurse Rachel » Tue Dec 22, 2015 3:22 pm

Dear BlacJac,

My name is Rachel and I am one of the nurses that works on the support service. Thank you so much again for sharing your experience, however I’m also sorry to hear that you are experiencing more symptoms and are having to go through more investigations!

Just in reference to your question ‘can lymphoma cause issues with the pancreas’ the answer is that unfortunately lymphoma can occur anywhere in the body including (but I am pleased to say), very rarely, the pancreas.

Just as a word of reassurance, however, swollen lymph nodes are usually a sign of infection and usually go back down when the infection is clearing up. BlackJac, I do also hope that this is what is happening in your case?

The NHS Choices website describes how lymph nodes commonly look like pea-sized lumps of tissue and contain white blood cells. Their role is to help to fight bacteria, viruses and anything else that causes infection within the body and that they play an important part in the role of the immune system.

These lymph nodes can sometimes swell to more than a few centimetres and this is usually in response to infection or disease, such as a common cold or glandular fever. However, less commonly, swollen glands may also be caused by a non-infectious condition, such as rheumatoid arthritis or even cancer.

NHS Choices have a really good website in relation to lymph nodes and especially in relation to when you should definitely seek medical advice, so please feel free to access via the link below:

http://www.nhs.uk/conditions/swollen-gl ... ction.aspx

I must say BlacJac, and apologies for not finding this out…in relation to the ‘Virches window’ I have never hear of this term and have been unable to find anything about it!

Best Wishes,
Rachel.
Pancreatic Cancer UK Specialist Nurse.
Support and Information Team

BlacJAC
Posts: 48
Joined: Thu Oct 29, 2015 8:14 pm

Re: My convoluted diagnostic thread

Postby BlacJAC » Tue Dec 22, 2015 4:49 pm

Hi, got the node out today and it's unlikely I'll get the pathology back before the New Year.

The area is actually called the Virchow's node, my bad. It's not a usual area for any sort of node enlargement and when one is located (from the ENT doctor i quickly saw today said) it's almost always a cause for concern regardless of size or texture in an adult. The specialist also said, the same holds true for the right side too. Infections such as TB can also enlarge those nodes. Not got TB though. Collar bone nodes harbour all the bad stuff.

Here's a link to the wiki page regarding the area: https://en.wikipedia.org/wiki/Virchow's_node

All that aside, the actual procedure was fine as they numbed it using local and I just felt a tugging sensation. Now though, it's sore. A really squeamish sharp sort of pain. Feels a little bit similar to tearing a muscle when i move my neck in certain directions.

PCUK Nurse Rachel
Posts: 53
Joined: Wed Jan 14, 2015 4:25 pm

Re: My convoluted diagnostic thread

Postby PCUK Nurse Rachel » Wed Dec 23, 2015 4:55 pm

Dear BlacJac,

Thank you for the update in relation to your care and also for the web link in relation to the Vichows Node....I will certainly have a look at this!

Unfortunately, you are right, it is unlikely that you will get any results back before the New Year and I know that waiting on results can be a very worrying time. I am also just aware that at this time of year, a lot of services may also close, so please do not feel alone. Should you wish to discuss anything with us, then feel free to call or email our support services over this period.Free phone 0808 801 0707.

Jeni has just put a post up with our Christmas opening hours, so please do not hesitate to get in contact.

Blacjac, I will also email you separately on some of the points that you raised in your post. I hope that this is ok?

Kindest regards,

Rachel
Pancreatic Cancer UK Specialist Nurse.
Support and Information Team.