Aibu..should I accept what my doctor says?

[BITCAT]

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.

It could be a number of things, the stool sample should help. It's a faecal calprotectin test.

Thank you all..Sometimes it just helps to here other people's experiences.
And get someone elses take on it.
You have all given me some good ideas and some good advice which I will be taking on board. I will try keep you all updated on my progress he said should take ten days after my bloods and stool test for results..so I will check back.

My stool sample took about a month!!!! Honestly it was so long and I was so desperate to find out the result!!!

Good luck.

In some people, only very small bits of the bowel are affected, which still causes a lot of pain and other symptoms but may be missed when tests are carried out.

There seems to be a lot of autoimmune things going on in your extended family. Any confirmed coeliacs? With your migraine, gut and thyroid I think, even if you've had a negative test, it could be worth considering an autoimmune protocol completely grain free exclusion diet (I'd recommend Marksdailyapple blog as a starting point for reading into why that could be a good idea).

Of course, this will only help you if your condition(s) is caused/worsened by an immune response to grain proteins (not just gluten, there are many!), but lots of people do find huge improvements (I'm one of them). If you tried it for a month or two, you loose nothing but could potentially gain a lot (of health!)

I think it sounds like coeliac. You said your GP suspects that's the issue, has he tested you?

Have you been tested for celiacs disease? If your GP suspects it, it would be logical.

My DH ended up in hospital with abdo pain. The Dr said he thought it was "his thing" like some people get migraines. Wouldn't test for coeliac (even though I asked), but was happy to do a CT, and ultrasound and other bloods. One week later GP tested for coeliac and yes positive. No abdo pain is not "his thing". He has an auto immune condition. Still pissed off on that one

I think sometimes you can have two or three things going on at the same time which make them incredibly difficult to diagnose.

I have a lot of your symptoms. After two years I've been diagnosed with Fibromyalgia, intercranial hypertension (IIH) and I've had IBS for a long time. I suspect I'm at least intolerant if not allergic to gluten.

If you are having headaches I would really advise going to get an eye test at the optician if you haven't had one recently. An optician where they take a photo of the eyeball (e.g. Boots). That's how my IIH was diagnosed (which was totally ignored by the GP and missed by the neurologist). It's a really cheap easy way of ruling out some headache causing conditions.

But largely, it works by you keep going back to the GP and saying, I'm still ill. What can we do. It's not that they don't believe you. It's that for many people they have symptoms for a while then they get better. So they wait it out sometimes and rely on you to keep coming back.

But I guess when you have so many symptoms, it's just not obvious what's causing it. I have read on here people paying privately to be tested for Crohn's. Is that possible for you?

Oh just to add - the IIH - the reason I say get your eyes tested is that quite a few people with IIH also have Fibromyalgia. They seem to go together sometimes.

Have you had a look at Ehlers Danlos syndrome/hypermobility? I have joint issues and issues with my stomach etc and I have Ehlers Danlos

I think it sounds like IBS. people with IBS tend to have thyroid issues. fatigue seems to go hand in hand with IBS as well for a lot of people. its good other tests are being carried out to try and get to the bottom of whats going on.

I don't understand why you aren't on medicationfor your thyroid? It doesnt make any sense, if a thyroid is underactive you get meds for it, but yours is nearly at a standstill and nothing!?

Your tiredness and stomach problems could all be thyroid symptons.
You must go back or ask for a referral to endocrinology.

Completely agree with cocolepew, you absolutely need to get to the bottom of your thyroid function before you can try and get anything else sorted. Please get your bloods checked before January
Have a read of this
www.btf-thyroid.org/information/your-thyroid-gland

He won't test my thyroid until January. He said this the other day..I don't understand as they are taking blood anyway why they can't just check it at the same time.
And yes there are many things in my family bowel cancer, crohns, no celiac disease as far as I know, thyroid disease, copd, raynards, early onset arthritis, ear nose throat problems.
I've had my eyes checked too..I do use glasses mainly for reading, watching TV, using pc/laptop.
I had severe migraines as a teenager but they put it all down to hormonal.

Hang on... If you aren't on thyroid medication, then you are far far from your thyroid 'barely hanging on'! Is that the term your doctor used, or are you being a bit dramatic about it?

The first step is to see what your TSH (thyroid) levels have been at your previous tests, and if it has been consistently above 4.5, to press to be started on thyroxine.

You may well find you have a huge improvement to a range of symptoms you are currently experiencing. For me, I was sub-clinical with symptoms until my TSH was below 2.5, so it might be a while before your dose settles.

Have you tried elimination diets yet? Starting with gluten if you have a family history of coeliac disease?

As far as thyroid disease goes, it is a good move to cut out all gluten (and grains, if you can) as gluten intolerance is extremely prevalent in autoimmune thyroid disease.

Sparechange this is how my doctor described it. His exact words were that it's barely functioning. Didn't explain any levels or anything just said to retest in Jan to see how fast it's deteriorating and whether treatment should start then. They are just not very good at telling us anything tbh...I've had inflamation in my hips joints and shoulder and this was confirmed with xrays..it's flaring up again..and I have days where I can not put weight on my leg or move my shoulder at all. I almost have to do my own research to find out what is wrong with me because they will not investigate..I. just get the feeling they can't be bothered.

I think the first thing I'm going to do start a diary. I think this would be very useful with the doctors..and to show them what's going on.

Are you in the U.K.?

I am yes slightlyinsane.

Please please please phone up today to see what they tested your thyroid for, what the levels were and what the labs normal ranges are. Post them on here, lots of knowledge on here about thyroids. If it really is as bad as he suggested your whole body will be suffering. The impact a poorly functioning thyroid can have on your body is immense and it doesn't need to be.
Once you've got your results you need to see a different gp.

I agree with Slightly- the results of your medical tests are YOUR results, ask for a printout of all the blood results.

Right had more bloods done. I'm becoming anemic. I have to pay to get my records printed. But he has said my tsh test was high..but my tf4 was just in the normal range so he says it's classed as mild thyroid failure..which may progress to full failure given my family history with thyroid history this is very likely. This is why he wants to retest in Jan to see if it deteriorating further...he said it could be contributing to my symptoms.
I am waiting for an appointment for endoscopy for my acid reflux. Advised to take iron tablets. My stool sample is not back yet which he is surprised at.
I'm absolutely worn out.

And he said my bloods rule out coeliac disease.