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Aibu..should I accept what my doctor says?

(58 Posts)
BITCAT Mon 05-Dec-16 11:37:34

Hi all. I'm 39, it has been determined that my thyroid is failing and barely hanging on. To be retested in Jan.
I am worried that I may also have crohns disease..ive had tummy issues for a long time and I just put it down to ibs. I've always been extremely tired never seeming to get enough sleep. I have recently discovered my grandad had crohns and he eventually passed away when I was 7 from bowel cancer. My sister also has crohns. I'm getting most of the symptoms..Sometimes spending most of my day dashing to the loo.
I keep getting tendonitis in my shoulder and hip pain to the point I can not walk on it.
My doctor says he doesn't think I have crohns as I'm too well?? As I have researched different people have different experiences and degrees of crohns depending on whether it is active and where the irritation is. My grandad lived quite an active lifestyle and was never visibly poorly as such. I just feel he isn't really listening..I feel unwell 90% of the time..I'm bloated..and it can be very embarrassing when I'm out and my body decides to break wind..it's not pleasant and dashing to the loo. Aibu..should I just accept that I probably just have ibs or should I insist they look into it.

BITCAT Mon 05-Dec-16 11:56:17

Ps I apologise for the long explanation.

PinkSwimGoggles Mon 05-Dec-16 12:04:48

yanbu
with those symptoms and family history you need to be taken seriously.
go back. ask for referral.

slightlyinsane Mon 05-Dec-16 15:48:44

What do you mean when you say your thyroid is barely hanging on??
A lot of what you have described can be symptoms of thyroid problems and may not be crohns.

BITCAT Mon 05-Dec-16 17:22:04

When last tested it was just working we suspect that it will have stopped working all together when January comes round. I'm just concerned as I know the bowel cancer is very much related to crohns. My thyroid has been fine up until recently it is also in the family with several aunties having thyroid disease, one of my sisters and a great aunt. The tummy problems and tiredness has been there since I was a teenager. I had just put it down to it just being the way I am and a bit of ibs..but it has got a lot worse over the last couple of years and it's possible it's a combination of things. I just want them rule it out really..as doctors are not beyond making mistakes or not taking people's concerns seriously.

slightlyinsane Wed 07-Dec-16 00:31:54

I would be asking what levels they checked with your thyroid.
Have they given you any meds to counter act the lack of thyroid function?

Manumission Wed 07-Dec-16 00:35:27

Have you looked at the possibility of fibromyalgia? (Joint pain, tendon trouble, iffy thyroid, IBS).

Manumission Wed 07-Dec-16 00:35:49

Oh and the fatigue.

Tootsiepops Wed 07-Dec-16 00:38:24

Have you got hashimoto's, OP? Are you on meds? Which ones?

If you haven't had any of this explained to you, then your GP is shit and you should get a new one to look in to your health issues.

BusterGonad Wed 07-Dec-16 04:24:06

You need to expand on your post, what tests have you had done? Blood tests? CRP? Stool sample? Colonoscopy? I've got Crohn's my CRP levels were higher than normal, did a stool sample and showed markers for Crohn's, the stool sample is key, it ruled out IBS. Then had a colonoscopy and here I am diagnosed and happy but unhappy! confused. Crohn's can make you feel totally shit, pardon the pun, most of my symptoms were not to do with the toilet, the cramps and toilet issues were once every few years, then every year then hit the crescendo and happened every month then every two weeks until I got medicated. I was very very tired, achy, sore eyes, super dry lips, lumps on legs.

BITCAT Wed 07-Dec-16 10:01:23

I've been back to them..I was in agony yesterday..been booked in for bloods on Friday and stool sample to be taken too.
I am also suffering with bad acid reflux..which I am also having investigation into. My mother apparently has fibromyalgia..my brother told me.
Tootsiepops I have no idea what that is..I will look it up.
My docs are awful..they rarely listen to me..I think they believe I'm a hypochondriac, I'm really not..I just want to.get to the bottom of why I feel so bad all the time. Extreme tiredness is the worst thing..along with the constant aching and reflux everytime is eat anything. That with dashing to the toilet and embarrassing wind at the worst possible times..means I don't go out very often.
Slightlyinsane no they haven't given me any Meds yet as my doctor said my thyroid is still working..just..That's why I'm being retested in Jan to see if it has gone then I will be put on Meds I assume..he claims I won't be noticing any symptoms because it's still working..just about..That's how he put it.
I have little faith in the doctors tbh.
Both my grandparents died of bowel cancer and I worry about it, as it is closely linked to bowel conditions.
My younger soon has suffered with his bowels since he was tiny..chronic constipation, he is 13 and still on Meds..no tests done..not even an ultrasound.
My doctor thinks it's more likely I have celiac disease than crohns as he thinks I'm not ill enough, well it's stopping me living my life so I think that's ill enough. So for such a long one.

Manumission Wed 07-Dec-16 10:03:22

It's harder to be assertive when you're shattered isn't it? flowers

BITCAT Wed 07-Dec-16 10:03:33

I get some really awful migraines too which stop me in my tracks, dizzy, sore eyes, feel sick..Sometimes for a day or 2.

BITCAT Wed 07-Dec-16 10:06:35

It really is Manumission. Thanks everyone for your info and advice.
Sometimes I think I'm going mad..and maybe it's all I'm my head.

Manumission Wed 07-Dec-16 10:07:54

It's all yelling rheumatic/systemic/fibromyalgia type things at me, I must say. But of course that's completely unqualified gut reaction based on internet posts.

The diagnostic difficulty of some conditions mean you are might likely to go round in circles like this for a while, though, sadly.

Do give some thought to what your symptoms are collectively as well as seeking reassurance on the bowel issue. Have you tried writing a list of symptoms with dates?

Manumission Wed 07-Dec-16 10:12:27

I'm sure you're completely sane, just frustrated and ill flowers

BusterGonad Wed 07-Dec-16 10:15:10

Not ill enough what a joke, I'm pretty normal and I think I've had Crohn's all my life, I don't know what life is without it so how would I know if I was ill enough or not as I have no 'normal'. Admittedly Crohn's is hard to diagnose. I'm not skinny like your typical Crohn's sufferer, but I'm certainly lethargic, and have painful cramps and instead of needed the lol all the time I often struggle to go. Not one size fits all with such a disease. Good luck OP and I hope you get answers.

BITCAT Wed 07-Dec-16 10:18:25

No I haven't but I might start a diary. Even down to bowel movements..I suppose it could be useful. I just want to be able to be there for my kids and not be too tired to do anything with them. I've not got many more years left with them as kids. My youngest is about to turn 11.

BITCAT Wed 07-Dec-16 10:23:06

I'm not skinny either and neither was my grandad, until the bowel cancer.
I'm quiet bloated..and I do have spells of constipation and I had read somewhere that it can be different for each sufferer..some are very poorly but others not so much as you say it's more the tiredness and lack of energy that's the main issue. He asked me had I lost any weight..I. honestly hadn't a clue as I don't weigh myself usually.

abbsisspartacus Wed 07-Dec-16 10:27:40

If your thyroid is failing you should be on medication now it will be causing fatigue

Can you change doctors?

BusterGonad Wed 07-Dec-16 10:29:46

I did lose about 10lbs when I was really ill as my episodes increased to every two weeks and I got scared to eat, I knew I had Crohn's because in the midnight hours going through intermittent cramps that take your breath away a googled what causes cramps etc and came across the Crohn's forum, peoples story's about diagnosis and what they feel like in a flare and it was exactly what I'd been suffering. It was waves of severe pain that nothing eases, you can't be sick, you can't poo, it was hideous, what I imaging child birth (I had a c section) to feel like, do not flame me as many Crohn's sufferers who have given birth say it worse! OP take a look on the Crohn's forum. Read other people's story's. I told the doctor I thought it was IBD he wasn't so sure, but it was!

Katymac Wed 07-Dec-16 10:37:29

Get blood tests
B12 iron foliate vit D zinc
It sounds like me & I am deficient in all these (plus diagnoses of CFS/FM/IBS

BusterGonad Wed 07-Dec-16 10:43:27

Yes OP do not be fobbed off, if you are genuinely ill, I'm not being rude as I know a lot of people suffer health anxiety and that's a different ball game, then don't give up. If I hadn't have kept on going to my docs I'd be sitting here with a diagnoses of IBS or a grumbling appendix! I'd still be suffering, probably skinny (hmmm not such a bad thing) and very poorly!

BITCAT Wed 07-Dec-16 10:44:15

The only other doctors is quite far away from me..and I don't drive. I will definately start a diary and persevere with the docs..I won't let it go..even if I have to insist on a second opinion and keep going back bugging them. I'm not saying I'm right..it might not be crohns..but there is something not right and I need to know what it is to get the correct treatment.

BITCAT Wed 07-Dec-16 10:47:21

I was working and I've had to give it up..just too ill all the time. Too tired to carry on.
Even dropped my hours and that wasn't enough. I want to go back to work but I need to get this sorted before I do so I know what I can or can't do.

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