10 September 2017 at 6:23 pm #55262
To give you an idea why I’m here I’ll give you a bit of history
I’m a 42 year old guy and for around 7 years I have suffered from questionable bowel habits. Being that stereotypical guy, I ignored them. There was never any blood, just the frequency. Fast forward to two years ago and I seemed to develop issues with fatty foods. My stools were pale and on one occasion white with orange oil and all floated more often than not. During that time I also acquired a slight and intermittent upper right stitch type pain (just under the rib cage). Nothing really sore about it at all. Just niggled. Apologies for the graphic descriptions.
Anyway, I did what any good hypochondriac would do, I googled the symptoms. Everything pointed to either pancreatic issues or an issue with the gallbladder. After i freaked myself out I went to the gp the next day, had bloods and was referred for an US of my liver, GB, pancreas and kidneys. Bloods were fine as was the US.
Fast forward to 3 weeks ago. Just after having an argument with my wife, I suddenly became very, very hot. Thought nothing of it and thought it would pass. It didn’t and for the first week I felt I was burning. It was constant. When the gp and myself took numerous temps, they were all normal. Had bloods taken for prostate, thyroid, iron, diabetes etc etc and all have come back normal.
I suspect what I’m having are flushes or at the beginning a constant flush even though I’m not really going red. Only my ears go really red. Whilst the 1st and 2md week flushing was all over (head, top of my back, tops of arms and thighs), this past week the flushing has turned down a notch and now only really affects me at one side of my face, back and thigh at any time. I’m also no longer sitting with wet flannels on my face in front of a fan.
I know when the heat issues are gonna be hotter than my usual now constant hotness, I get a high pitched ring in my left ear, quickly followed by a split second dizzy spell (feels like it comes from the back of my neck) and a sore head that goes through from the back of my head to my eye. The headache only appears on the same side as I’m feeling hot. Never my cool side. But the ringing is always only in my left ear (not a pulsating sound). About 5-10mins latter the flush appears on one side. Like i said, I’m not going particularly red, but I feel like I’m burning up.
So yeah, I’ve googled hot dry flashes in males last week and guess what popped up. You guessed it.
I was palmed off with IBS from my GP 2 years ago and I think my new symptoms are related. My current GP said because all those bloods from two years ago, my US also from two years ago were fine as were my new rounds of bloods, she’s put it down to anxiety and doesn’t think my symptoms warrant further investigation. I’d really like to know how I can convince my GP flushing in males is not normal.10 September 2017 at 6:40 pm #55263
My husband didn’t have flushes but it took us a year to be diagnosed project properly and only after a scan.My husband had also lots of tests and all
Of them came back negative.They only really got concerned when he had really bad pains and we had need up in a&e.Mt advice would be if you are worried ,ask them for referral to gastroenterologist and anyway flushing is a red flag or exaggerate and say you have pains and they will give you CT scan straight away.Nevertheless,it’s always best to check rather than having a late diagnosis.Good luck and I hope it’s not a carcinoid.Julia10 September 2017 at 7:06 pm #55264
Thank you for your response. Much appreciated. My bowel issues have improved greatly in 2 years since i cut over 90% of fats out my diet. Poop returned to normal color and frequency went down to 1-a-day. However, I am on a low dose of codeine for a back issue that was diagnosed via an mri a few years ago. I suspect the codeine is masking most of my loo issues.12 September 2017 at 9:06 am #55267
I was diagnosed with ibs and had lots of blood tests which were all OK. The problem is they weren’t doing the right blood test. To check for a carcinoid they need to do the gut fasting blood test to check your hormone levels. Carcinoid is rare and not a lot of doctors know anything about it. My primary NET showed on a ct but the mets on my liver only show on MRI. Hopefully you haven’t got carcinoid syndrome but if you have, you should be having treatment.Ask if you can be referred to a NET specialist.12 September 2017 at 1:17 pm #55268
Hi, thank you so much for taking the time out to respond.
I have a question, if i were to go privately, which seems to be the only choice I may have due to my GP’s insistence that normal blood panels are the be all and end all, what would be the best specialist to see privately? I really don’t want to see an Oncologist straight off the bat as I think that would be a step too far at the moment. Would a GI or Endocrinologist be the best choice? I’m thinking the latter as it’s them who specialise in hormones so to speak. I just need my hormones tested before I figure out what comes next. Or if someone really does think an oncologist is the best, then Oncologist it is. However, if it turned out to be something else or something else hormone related I’d then have to see someone else. Simply trying to get a specialist who stands the best chance of initially finding whatever the issue may be.
Thanks.14 September 2017 at 10:15 am #55272
Just thought I’d let you guys know that my GP has referred me to an oncologist. She thought I was nuts and probably still does, but after her telling me they wouldn’t entertain me due to having no diagnostic markers thus far pointing to any sort of cancer, they [Oncologists or cancer centre] told her my symptoms warranted a referral of sorts. No idea what “of sorts” actually means, but hey none of us want to be here, but I’d rather get laughed at further down the line than to sit on something that may evolve weeks or months down the line.
I know no one is really listening to me, but it helps to write it down.14 September 2017 at 11:20 am #55273
People do listen KeTa and I am pleased you have a referral to put your mind at rest, hopefully but also to allow you to discuss your symptoms with someone who may have advice for you. Good luck.15 September 2017 at 5:08 pm #55301
Sorry KeTa I haven’t been on the forum for a few days. Glad you’ve been referred. My specialist is an endocrinologist but I’m sure it’s a step in the right direction to see an ecologist and they’ll refer you on, if needed. Good luck x15 September 2017 at 5:45 pm #55302
Kinda feel a lot more relaxed about it all after talking to an older GP who has seen most things. Had it explained that NET’s are rare and whilst all my symptoms together can slightly lean towards there being that issue, many more people have more than 1 thing going on which can give the impression there’s only one thing going on rather than 2 or 3 things going on if that makes sense.
My oncology referral has been changed to a GI appointment as oncology want at least some sort of evidence that cancer is involved somehow. Makes sense i suppose. The anxiety has been overwhelming for the last 2 or 3 weeks and it’s only in the last few days I’ve come down from it and I accept a lot of these symptoms could be due to anxiety. Including the heat issues. Like i said above, I’m not going noticeably redder, only the ear on which side I’m having the flushing sensation.
The flushing sensation has also toned down a little. When i get it, it is nowhere near as horrific as it was 2 or 3 weeks ago. Thinking positively as that’s all I can do.
15 September 2017 at 8:14 pm #55304
- This reply was modified 9 months, 1 week ago by KeTa.
Hopefully it all goes away as quickly as it came. There are some horrible viruses out there and as your GP said carcinoid’s are rare. We all get anxious waiting for results. It’s a lot to cope with. Stay positive.
Elaine27 November 2017 at 4:01 pm #55898
Hi, an update of sorts. Saw a GI, then an oncologist. To say I’ve gotten absolutely nowhere is an understatement. The GI passed me on to oncology and oncology were left scratching their head why I was even sent to them.
My flushing sensation kinda tailed off, and has now come back with the really cold weather we’re having up here in Scotland. The oncologist said he can see no flushing in my face (even though I was feeling flushed), only on my ears which he said lots and lots of people get with anxiety. He also stated the diarrhea/toilet frequency I’m getting isn’t severe enough. Even though I explained to him I’m taking 4x 30/500gm codeine a-day, so could be/will be masking the true severity of my toilet habits. To be fair, and I do accept to an extent he may be correct as I’m only going once per day. He said I’d be on a toilet a lot more especially if it had gotten to the stage where I was getting the flushes.
Something that is really bothering me is the tinnitus in my left ear. Ringing i can put up with, but before i get the hot sensation on my face, I get a really piercing/drilling ring in the ear. It’s horrid and is worse than the actual flushing/heat issues. It can last mere seconds or hours. My neck muscle on one side always gets a little bit achy too. He said that’s an issue for an ENT.
As for the flushing or heat issues, I only get it on one side of my face at any one time. For example, at the moment it’s my left side (red hot ear and very hot cheek). Right side feels normal. It does happen on the right side too as i said.
So yeah, no tests, no nothing.
28 November 2017 at 10:56 am #55902
- This reply was modified 6 months, 3 weeks ago by KeTa.
Hello KeTa, just seen your posting. I think you must get a referral to a specialist NET clinic, so that, at least you can rule out Nets or not. There is a map which shows where these specialist clinics are, just follow the link at the top – Net clinics and research, then it will take you to the UKINETS website, there the map shows all the specialist clinics. You could also ring our nurses, or just ring the office on 01926883487. Carole.28 November 2017 at 5:23 pm #55903
Hi Caroline. Thanks for the input.
The closest one to me is the Edinburgh Western, however, that’s where i had my appointment (Oncology). I don’t think my GP will refer me again as she was hesitant to refer me in the first place. I say that as she needed persuasion to even refer me in the first place. The other GP i saw is basically singing from the same hymn sheet. It’s all anxiety. My fight or flight response working overtime. Giving me heat issues, IBS and whatever else falls nicely into that particular bracket. Seems the NHS nowadays works on the basis that if all the bog standard tests are OK, then GP’s hands are tied as they have to justify referrals. Oncology was useless. The only test I got from them was a testicle examination. No idea why, but I’m assuming there was a reason for that. I’m a little bit perplexed by it all to be honest.
I’ve been out of work for 4 years due to a back issue so only have my partner’s wage coming in. Thus would find it difficult to go the private route having looked into that option.
- This reply was modified 6 months, 3 weeks ago by KeTa.
You must be logged in to reply to this topic.