As well as having Hashimotos and some other health conditions i feel that something else is happening which needs further investigation.
My GP really does not know what to do next as my bloods all come back normal.
My question is how to you try to get your doctor to test for causes that are not so obvious.
With a degree of certainty i feel that some of my symptoms are due to another cause and just because that cause has not been identified it does not mean that its not real.
Anyone been in this situation and if so how did you manage to take it forward.
Thanks
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yorkshiregirl44
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Do you suspect something in particular or do you mean that you think there is something no one yet has thought of? It probably depends on what sort of symptoms you have.
Ye i do susspect vasculitis or Polymyocitis... when i have what i think are like flare up i think its due to some imflamation. Its not like flu symptoms most of the time, but like a surging and kind of hardness through my body lasting a few hours or longer. Its very profound and i know exactly when its arriving and i know the minute it goes.If i could make this connection i think i would be nearer to the cause.
Just say to yer doc that yer mother or father had it,i had to tell them this to finally get a thyroid check which was true but before i told them this they were very reluctent to do it.
That should not be too hard. My mum died at 65 and because she had been going to the doctor having crohns disease they wrote that on her death cert, obviously there was another cause. My dad 85 still going strong but as many many conditions so yes i could add them to the list.
hi I have felt this way too.everything was stable up until sept 2011 when I suddenly lost weight (don't know how much as counterbalanced by increase in abdominal weight)then things went downhill.stomach more swollen,backpain.pelvic pain swelling in face. discolouration around eyes.nasal sores and bone pain ,painful protrudign ribs -tho not in that order,tightness in neck ,hoarseness,lump in neck and enlarged gland and larynx,cough (about a year when lying down at night).hair has become dry and lank .skin rashes on scalp face and legs fingers are very sore .have cts in left hand and a curve in my spine .get breathless on climbing steps and uphill and walkign on sand,.thye say all bloods are normal and scans show nothing and put everything down to fibro and IBS which I know I don't have.weight went up by 11kgs accordign to rheumatologist (in 6 years between seeing him)btu he didn't account for weight loss or that i had gained on my stomach and told me to diet when I don't eat anything other tahn breakfast and a small meal.
things have been worse since my gallbladder op and tahst when my dogs began acting oddly-very clingy.hating me leavign them even for a short time.,nestling up close.
today have persistent pelvic pain .tightness in neck, hoarseness,stomach is a solid hard mass,neck so tight cant wear polo necks.gto breathless walking uphill andpelvic pain.ny gp refuses to investiaget any more and ahve been to A&E a few times .looks like ill have to go back
Hi, Yes iv been following your posts..you dont seem to be able to get answers also.
Im going to make another gp appointment and write all symptons down. Surely there must be a gneric area of medicine for identifying compex cases and i dont mean cfs clinics.
Do you have blood test results that you can post? Have you tried googling your symptoms one at a time? Possibly a common thread could come through which would point you in one direction!
I know from personal experience that symptoms can be weird, change around, go away, then come back! I would certainly mention your Mum's health. Your Dad has done well to get to 85. My Dad was diagnosed with Crohn's disease at 87 and it his genes I get hypo from. Half his immediate family are hypo but he's only one we know of with Crohns, but both my daughters are wheat intolerant. I have been wheat free but going to start Paleo when I have read up on it. Have you tried leaving out Gluten in your diet? Hope you find and answer soon Unfortunately we live in a tick box culture and I think current generation of Docs only know how to diagnose with one set of symptoms that tick one box!!
Thanks, I have crohns also was diagnosed at 23.What ever happens at a flare up is very spesific and is always the same. Does not feel like a virus. Iv not tried going gluten free but do have quite a simple diet as im a fussy eater.
My last bloods were t4 18.5 (7.5-21.1) t3 6.14 (3-5_ tsh 0.16 (0.34-5.6) Low vid d and taking supplements.
Was having alot of palpitations solowered my medsbut have still had flare up.
Crohn's means that your body cannot absorb all the nutrients your body needs. You are likely to have issues with low Vit D, ferritin, folate and especially B12(My dad was given injections) Read up on intrinsic factor! You are also likely to be low in minerals, Magnesium, Zinc, Selenium. If I was you I would pay for Blue Horizon blood tests of all above plus your Tsh, T3 and T4 and also check your antibodies. Crohn's is often associated with thyroid anti bodies- both are auto immune conditions.
My experience with Dad was that he had an op to remove part of his gut and they sent him home with no dietary info whatsoever. Doctors do not seem to have cottoned on to "you are what you eat" you wouldn't put diesel in a petrol car!! I would try a Gluten free diet too. keep us posted
Hi there, a friend of mine many years ago had bad chrohns,they gave full advise then on what to eat or not. He was on a liquid diet for years and actually still is.it was something like complain but on prescription and packed a more powerful punch of every vit and mineral need to live.3times a day.He said so so boring but it worked well and helped him a lot.he now has been able to add potato& boiled chicken as a main meal every day.hes had illness for about 40 years but manages ok with just that foodstuff.Why nowadays do they not give this kind of clear advice to people and of course prescribe the liquid food if necessary? Cynical me but probably costs and the expectation that people will sort it out themselves.huh some hope.far more support needed for true chrohns sufferers I think.
I believe you have Hashimotos & B12 deficiency as all those gut symptons,breathless on exertion,Swollen neck etc ,It took me 6 mths to find a holistic dr that found MTHR gene mutation to B12.low cortisol levels,gut & liver inflamation.This fact gave an answer to my mother & siblings health issues.You need to read Could it be B12 ? By Sally Pacholok & Jeffrey Stuart.B12 levels are meant to be > 500 If below warrants immediate treatment.I have hearing loss & numb feet,memory loss due to nerve damage.Good luck you definitely need a dr that listens to your symptons.Gluten free initially did reduce inflammation of thyroiditis.
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