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Author Topic: Suffering and out of ideas  (Read 1161 times)
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tony111
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« on: October 22, 2017, 01:26:48 PM »

Thanks for accepting me on the forum. I have posted on intro section, so wasnt sure if i should copy here too ?.

I知 here to share my experience but also out of desperation to be honest.

I am feeling ill with utter fatigue and tiredness that often feels like flu, that is with me most of the time. My perception of temperature is gone and I知 cold all the time. I have abdominal bloating and discomfort, heart palpitations. Bladder and bowel function have slowed down. I have gained weight even though I eat half of what I used to eat. Tinnitus, diminished sense of smell has appeared lately. My gut feels so tight but there is no sign of fluid.

I知 Male, 50 and have been very fit and healthy until 1 Year ago, though there may have been subtle signs of trouble several Years ago.

I have had seen 30 Gp痴 and several gastric specialists. Test have ranged from CT abdomen, Colonoscopy, small bowel cam, gastric cam, ultrasounds, blood tests, stool tests, Celiac - blood test negative. B12 - normal. 
 
The only thing I do know is that I have Low ferritin iron and low cortisol levels and a benign thyroid cyst. Everything is normal range. There is no sign of blood loss anywhere and blood red cell count remains static.

I believe this started about two years ago after a stressful job situation and I quit. Fortunately, I was able to take an early pension to survive.

I知 at a loss and so are the doctors but sometimes I feel at deaths door.

Any thought would be appreciated because I知 out of ideas.

Thank you
 
 



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roger
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« Reply #1 on: October 22, 2017, 02:13:54 PM »

Hi Tony, and welcome.

The intro thread alone would have been fine, but no problem with posting here, too.

Can I ask, have any of the GP's offered any suggestions at all, or have they just left you to it? If the latter, are you confident that they've done ALL the tests relevant to your symptoms? If not, then I'd push them to investigate further. If the former, then as what you've described sounds very much like CFS/ME, I'd accept that.

That being so, I'd suggest this book - https://www.amazon.co.uk/Diagnosis-Treatment-Chronic-Syndrome-Encephalitis/dp/1781610797/ref=sr_1_3?s=books&ie=UTF8&qid=1508681347&sr=1-3&keywords=sarah+myhill - as a starting point bevcause it clearly outlines what CFS/ME is all about.

I had CFS/ME for many years, eventually working out my own to it, which worked for me. Whether it would would for you I don't know, but it might be at least having a look at this board to see what you think - http://forum.chronicfatiguesyndrome.me.uk/index.php/board,79.0.html

Beyond that, if you have any questions, please ask them. We're here to help as best we can  smile
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tony111
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« Reply #2 on: October 22, 2017, 05:01:25 PM »

Thanks Roger for your reply and information, ii will check out your links

I feel that drs are clutching at straws now and taking so much time , here on our NHS

Speculation about other possibities remain like adrenal insufficiency, pancreatic deficiency or malabsorption but these need more tests

The latest Dr suggested post viral disease

Apart from that I'm in limbo

Thanks again
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roger
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« Reply #3 on: October 22, 2017, 05:45:59 PM »

Looks like they're guessing, Tony, so yes, more tests. It may well be CFS/ME, but before you're sure, you have to rule out ALL other known possibilities. So harass your GP!!

Please don't hesitate to raise any queries you might have here on the forum - we need more male members  smile
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kittenmittens
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« Reply #4 on: January 29, 2018, 04:21:33 PM »

Hi Tony,

I'm new here as well and don't know a lot about ME/CFS yet, however, I do have Hypothyroidism and with this illness Drs often say you're fine when your results are 'in range', but that doesn't mean the results are good, if you can get the results of your last thyroid test I can have a look at them and see if they look okay.  The reason I say this is that fatigue, temperature intolerance, feeling cold all the time, gaining weight, and a general slowing down of your systems, such as your digestive system, can all be hypothyroid symptoms.  Heart palpitations can also be experienced with thyroid issues.  However, these things can all be signs of other illness too, such as ME/CFS, so it's just an idea.

There is a thyroid forum which is really helpful (I'm not sure if I'm allowed to give you the name here, but you can find it on the website for the charity Thyroid UK (I'm hoping posting a charity name is ok, sorry moderators if it's not)), and they know a lot about vitamin levels and stuff, cortisol levels, etc, they could possibly help you with those if you wanted to post there, again, sometimes Drs say the levels are fine when they're in range, but that doesn't mean they are good.

Anyway, if I can help in any way just let me know.

Kittenmittens

« Last Edit: January 29, 2018, 04:49:24 PM by kittenmittens » Logged
roger
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« Reply #5 on: January 29, 2018, 04:53:34 PM »

The charity mention is okay KM  smile

But Tony hasn't visited the forum for a few months, so he may well miss your kind and useful comments.
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kittenmittens
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« Reply #6 on: January 29, 2018, 06:44:33 PM »

Thanks Roger,  he might miss them, but they are there for him if he returns  smile
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roger
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« Reply #7 on: January 29, 2018, 06:45:56 PM »

Absolutely  thumbsup
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DavidHic
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« Reply #8 on: September 27, 2018, 12:34:07 PM »

So I have weekends off. Is anybody interested im general hang out? Like shopping or food or movies?
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