A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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jict
Posts: 20
Joined: Sun Jan 08, 2017 7:25 pm

Re: Need advice as very worried

Postby jict » Tue Jan 10, 2017 7:35 pm

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.

Marmalade

Re: Need advice as very worried

Postby Marmalade » Tue Jan 10, 2017 8:48 pm

May I ask if you are male or female?

jict
Posts: 20
Joined: Sun Jan 08, 2017 7:25 pm

Re: Need advice as very worried

Postby jict » Tue Jan 10, 2017 8:54 pm

I'm female.

Marmalade

Re: Need advice as very worried

Postby Marmalade » Tue Jan 10, 2017 9:23 pm

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

jict
Posts: 20
Joined: Sun Jan 08, 2017 7:25 pm

Re: Need advice as very worried

Postby jict » Tue Jan 10, 2017 9:51 pm

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.

Marmalade

Re: Need advice as very worried

Postby Marmalade » Tue Jan 10, 2017 10:16 pm

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

jict
Posts: 20
Joined: Sun Jan 08, 2017 7:25 pm

Re: Need advice as very worried

Postby jict » Tue Jan 10, 2017 10:32 pm

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?

Marmalade

Re: Need advice as very worried

Postby Marmalade » Tue Jan 10, 2017 11:27 pm

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

jict
Posts: 20
Joined: Sun Jan 08, 2017 7:25 pm

Re: Need advice as very worried

Postby jict » Wed Jan 11, 2017 7:00 pm

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.

Marmalade

Re: Need advice as very worried

Postby Marmalade » Wed Jan 11, 2017 10:17 pm

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

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Need advice as very worried

Postby Elaine123 » Thu Jan 12, 2017 7:42 am

Hi I hope you get a diagnosis soon as to what is causing your symptoms and then you know what you are battling and can go all out to meet whatever it is head on. It's a worrying dill ema when you don't know and are unable to take the right steps to dealing with it. Retirement is right up there at the top of the stress tree and involves a whole life change but hopefully you can get some kind of diagnosis and can start your retirement journey.Take care
Elaine
X

jict
Posts: 20
Joined: Sun Jan 08, 2017 7:25 pm

Re: Need advice as very worried

Postby jict » Fri Jan 13, 2017 5:09 pm

Marmalade and Elaine - thank you for your replies.

Sorry for the late replies but I have not been too well this last couple of days. I decided to try the anti depressant tablets and took one at 9pm on Wednesday night. Woke up early on Thursday morning feeling very nauseous and that continued for the rest of the day along with a sore head. Really had no energy at all. I've read that this is a common side effect with Citalopram but as I already have digestive issues I really wasn't sure if it was a further symptom of that. All I know is that I felt 10 times worse than ever before.

I never really felt comfortable taking these types of tablets as I don't feel it's the answer so I have decided not to take any more just now. Today I am still feeling very nauseous with even less appetite than before. I hope this improves soon.

Marmalade

Re: Need advice as very worried

Postby Marmalade » Fri Jan 13, 2017 10:04 pm

It is very difficult, everyone round me has been struck with tummy bugs of late so I'm afraid I can't offer any comfort. Could be the antidepressants in which case another one might be better or none, might be a bug, might be so many things. I'm afraid its back to the GP next week if you are not feeling any better and ask that some proper investigation take place.

I have managed to avoid the bugs but several friends have been very poorly indeed.

Take care of yourself and keep warm

M

jict
Posts: 20
Joined: Sun Jan 08, 2017 7:25 pm

Re: Need advice as very worried

Postby jict » Sun Jan 15, 2017 12:16 pm

Thanks Marmalade. Yes there's a lot of tummy bugs just now but usually you're actually sick too. I just feel nauseous but not actually sick. Come and goes throughout the day.

I would have thought this would have gone away by now if it was the tablet but it's still there. Seems a little better but not away.

Marmalade

Re: Need advice as very worried

Postby Marmalade » Sun Jan 15, 2017 9:26 pm

Hi Jict,

It's good to hear that you are feeling a little better even if not fully back to normal. Are you able to do some yoga type exercise to help you relax and manage you symptoms. I've found Tai Chi very helpful and low impact…

M