Very worried about undiagnosed autoimmune disorders.

[PurpleGiraffe]

Hi everyone

I’ve been experiencing many hypothyroid symptoms for a few years now. GP has been saying results are normal. After advice from this forum I requested copies of my blood results from the last 3 years. I’ve looked through them and i’m worried they indicate I could have autoimmune diseases. ESR is raised, ferritin is at bottom of range, transferrin is top of range (above range once), free t4 is consistently low. I have been tested for coeliac 3 times even though I have told them I have been gluten free for 8 years because I get awful symptoms of I eat gluten - so of course the test is coming back negative! FSH and LH are raised (i’m 36 years old) which indicates premature ovarian failure.

None of these things have been discussed with me! These out of range results are news to me!

I am on to something or have I gone completely mad? Haha! I have a diagnosis of M.E. along with anxiety and depression and I struggle to get any GP to look beyond that.

I have ordered a Medichecks Thyroid Check UltraVit test (got a free replacement because I struggled collecting enough blood).

Any suggestions on what to do next? Or opinions on whether I could be on the right track?

[PurpleGiraffe]

I forgot to add I keep suffering with hypoglycemic symptoms every few hours too.

[Fruitandnutcase in reply to PurpleGiraffe]

I had the same - when my IBS was bad enough to get me to the doctor to be sure it actually was still IBS the GP decided to test for gluten when I’ve been gluten free for about four years - if only she hadn’t been so rushed and told me what she was testing for I could have told her that needless to say, like you nothing showed up.

Do you test your blood sugar when you feel you are having hypoglycaemic symptoms to know that your level is low? I have a blood glucose meter - was temporarily T2 - and I’ve found that when I feel shaky - how I imagine I would feel with low blood sugar - it’s not low at all - or even high.

[PurpleGiraffe in reply to Fruitandnutcase]

Exactly! Appointments are so rushed. I could have saved them some money if they had discussed what they were planning to test.

I’ve never tested to see what my blood sugar levels are like when i’m experiencing hypoglycaemic symptoms. Perhaps this is something I should consider? I get very cold, shaky, feel faint, very tired, headache, I feel confused and ‘out of it’. Once i’ve eaten after 10 minutes or so I feel better.

[Fruitandnutcase in reply to PurpleGiraffe]

That particular appointment was so strange and unclear that I actually asked if she was going to do blood tests - nothing seemed to be happening as I left the room and I wasn’t sure I’d heard right.

I just wondered about testing because what I’ve always felt was hypoglycaemia turns out not to be which really surprised me.

I decided to go GF by myself too. I ate French stick and pains au raisin all the way down through France and now have a photo where even close friends didn’t recognise my puffy face then I found I had inflammatory arthritis- yet another autoimmune condition which settled it.

Two years ago my rheumatologist offered to test me but like you no way was I going to eat gluten for six weeks when I’ve got no intention of eating gluten containing foods anyway.

[PurpleGiraffe in reply to Fruitandnutcase]

Unfortunately for the last two years or so all of my GP appointments have been strange and unclear. I think the problem is because I was diagnosed with M.E. 16 years ago (which I recovered from to lead a fairly normal life). Now I am very unwell again the GP is certain it is a ‘flare up’ and I have M.E. They don’t seem to listen when I tell them I have different symptoms to when I had M.E. Yes I am extremely fatigued but there are a lot of other new symptoms too!

Funnily enough it was the GP who suggested I kept a food diary and excluded dairy for a couple of weeks and reintroduce and then gluten and so on. This is how I discovered I couldn’t tolerate gluten. So why they keep testing me when i’m gluten free is beyond me! They just don’t listen. Maybe i’m not communicating effectively?

I have my first appointment at an M.E. clinic tomorrow. I will be expressing my concerns about my diagnosis. Fingers crossed they listen.

[Fruitandnutcase in reply to PurpleGiraffe]

Hope whoever you see at your ME clinic listens to you tomorrow. I can just imagine the hard time you’re having if they are talking ME anxiety and depression.

Doctors don’t seem to realise that it is depressing - very depressing when you are banging your head against a brick wall because they don’t listen to you - that’s not the same thing at all as being depressed.

[PurpleGiraffe in reply to Fruitandnutcase]

Thank you. 😊

[Angel_of_the_North in reply to PurpleGiraffe]

I think GPs just don't understand that you have to be eating gluten in order for the test to work. I had just the same thing and GPO wrote "not eating gluten" in the notes just before ordering the test! The gastro was cross that they'd wasted the test.

[greygoose]

We'll be better able to tell when you get the results back.

[PurpleGiraffe in reply to greygoose]

Thank you 😊

[greygoose in reply to PurpleGiraffe]

You're welcome.

[SlowDragon Ambassador]

To get a positive coeliac blood test you would have to eat high level gluten for 6 weeks prior to blood test/endoscopy

But large percentage with Hashimoto's are gluten intolerant not coeliac

It's not worth putting yourself through it

Post your full results and ranges once you get them

[PurpleGiraffe in reply to SlowDragon]

Thank you. Can’t say I relish the idea of 6-8 weeks eating gluten! I already feel ill enough.

[PurpleGiraffe]

I’ve been repeatedly told all blood results are normal. I’ve questioned thyroid a few times with GP to be told my results are normal - probably because TSH is in range. Now I have copies of my results I can see that some tests came back out of range or very low in range (free t4 and ferritin) and inflammation markers are above range, along with FSH and LH. I don’t understand why these results haven’t been discussed with me.

As far as i’m aware my Nana had rheumatoid arthritis, a thyroid problem (not sure if this was hyper or hypo), heart problems and very severe depression in her later years. Grandad had angina. Aunt had a mini stroke in her 50’s. Mum has carpel tunnel and possibly arthritis.

[PurpleGiraffe]

Aha my Mum is on statins! She struggles with anxiety as well.

I honestly wouldn’t be surprised if I have a problem with my pituitary gland and/or autoimmune disease/s rather than M.E.

I have my first appointment with an M.E. clinic tomorrow and will be seeing a specialist GP. I will be raising my concerns with them and see if that gets me anywhere.

[PurpleGiraffe]

Perhaps I should take a megaphone tomorrow. That might get them to listen, haha!

[AnneEvo]

Regarding not being able to get sufficient blood when you do a finger prick, I'm the same. Did all the suggested things, warming my hands, excercises to get the blood flowing. Having had 2 lots of tests previously (luckily just about managed to get enough) I was having another one done and decided to put my hands in very warm water for a few minutes and found the blood flowed freely! - I hadn't bothered with any excercises, just the warm water. Maybe try that next time