Feeling unwell but blood tests all normal... What do I do?!!

[LuvKaina]

Hi everyone, although I do browse through mumsnet a lot I am a new member and signed up to see if any of you lovely people can help me as I am so desperate.

Last 4 or 5 months have been really hard on me and I have been to my gp and had some blood tests which all came back normal. Well some were slightly out of range but the gp has marked all as normal.

My symptoms are as follows:

Migraines almost everyday which saw a neurologist for who has signed me off as suffering from chronic migraines.

Extreme hair loss and really brittle hair

Bacterial nose infections almost every other month

Lower back pain sometimes

Severe fatigue that I have to force myself to stay awake during the day

Episodes of constipation and diarrhoea- I had a stool test last year which showed fcp was raised however the repeat test after two weeks was normal.

I also get pain behind my eyes and my head just feels really heavy sometimes, not the usual migraines I get.

Almost every night I have pain in my calves and arms that continues during the day most times too.

A couple years back my thyroid tsh levels were borderline but the gp never asked me to do any repeat tests.

I do get anaemic a lot due to heavy periods. This was an issue almost every month so eventually I was advised to take iron tablets every month a week before my period starts and the week I'm on.

I went back to my gp last week as the cramps and fatigue is really getting to me. She checked all my blood results from july and told me that theres not much they can do as all my bloods were normal. She then asked me what was I hoping for in this appointment! So I told her maybe it might be vit D as I have had this before or maybe vit b12 as my sympoms match that aslo. It didnt seem she wanted to test me again for these as she told me my ferritin levels were normal at the last test so then went to take a second opinion from another gp and came back and agreed to do these tests. She told me it cant be thyroid or diabetes as my symptoms dont match!

Well my vit D and B12 came back normal now too. And I really don't know what to do now! I'm feeling so ill but nothing seems wrong. What do I do? As if I go bqck to my gp they'll say my bloods are all normal.

Can anyone please advise me on what I can do. xx

Ps sorry for the long post!

Do you know if you have had a blood test for coeliac disease?

Have they repeated your bloods for thyroid? Generally the threshold is set too high in this country ( in the USA they have a lower threshold to commence treatment as anything over 3 for TSH is considered out of normal range )plus they rarely test T3 and only sometimes test T4 and these levels are more important for treatment decisions. If you have previously been borderline for hypothyroid it’s usually only a matter of time before you become symptomatic. Fatigue,hair loss and muscle/joint pain are fairly classic for thyroid issues. Are you also perimenopausal age?

@pastabest Hi I have access to my nhs records and can see that came out of range but no treatment required.

@Justgonefishing the test i had done was a couple years back never repeated again. I was told that my T3 and T4 were normal but TSH was borderline. They never said i needed the tests repeating and when I mentined it this time to my gp she said my symptoms didnt sound like thyroi and niether diabetes so ruled these out. I have a appointment back at the gp on the 21st but im not sure what to ask for because i felt really stupid when the gp asked me last time what im expecting! Also im 39 and i dont think im premenopausal niether did my gp say.

Perimenopause?

@MoorlandWanderer I dont think so. My periods are regular and on time every month and I am having ovulation every month. I always get pain during ovulation so know when I'm ovulating.

Me too - you don’t have to have erratic periods to be perimenopausal.

I had many of your symptoms and was eventually diagnosed coeliac, then also found I had an underactive thyroid.

@Stephjane how long did it take for your diagnosis? Did you use to get normal bloods like me initially? I just want to know what else can i ask my hp to do to help me as they say theyve done all required tests on me.

I’m getting this shit response too. Achy, pins and needles, tired, upset tummy. They just keep saying it’s anxiety because the blood tests aren’t identifying anything they can treat. I’m 43 and they said it’s not peri either because my periods are regular and I don’t have hot flushes. So now I AM getting anxiety wondering what the hell is wrong with me? Clearly not the easily fixable things. I’m starting to worry about everything from MS to leukaemia, and the worry is making me worse.

Honestly the thyroid levels thing is a guide. DH is on the line but his GP said to treat the symptoms not a number.
A lot of that sounds like thyroid to me. Tired, headaches, shooting pains in my arms, terrible periods - all my symptoms.

Can you post your actual blood test results? Did you have a ferritin test? Sounds like your anaemia hasn't been resolved.

Have you looked into ME/CFS? Coeliac as PP mentioned also sounds like a good call.

You sound just like me before my coeliac diagnosis. I knew something was very wrong but couldn't put my finger on what. If your coeliac screen was abnormal you should have been offered further testing, possibly an endoscopy to check your small intestine. I'd pursue that further, you don't realise how poorly you've been until you start getting better, daft as that sounds.

Could it be Endometriosis?

Long Covid?

diagnosed by excluding other conditions.

Blood tests that the NHS considers ‘in range’ can be far from ideal and leave you feeling like this.

100% sounds like coeliac disease and subsequent resulting vitamin deficiencies.

@LuvKaina you need to be properly investigated for :

• coeliac disease
• inflammatory bowel disease eg. crohn's/UC
• full range of autoimmune disease - lupus, rheumatoid etc. etc.
• your urine needs to be tested for protein
• you need to be retested for diabetes and thyroid issues
• possibly other endocrine issues

clearly it is not normal for someone healthy to have the symptoms you are having

if GP doesn't take you seriously, see a private GP and/or general medical consultant maybe a rheumatologist or endocrinologist....

did the bowel issues start with the iron tablets as those are notorious for causing bowel irregularities

Celiac, adrenal fatigue, gut absorption issues maybe? There is a big difference between the nhs ranges and feeling optimum for you. I had this with iron and thyroid issues- I suffered for 8 years because everytime I dragged myself to the dr they’d say everything’s come back fine. But I was boarderline for both thyroid and iron deficiency and had every single classic symptom. In the end I saw a private gp that looks at the whole picture (Microbiome, stress, diet, symptons) mainly because I couldn’t get out of bed and thought something was really really wrong. I’m still working on my Heath but so much better than I was

That's not really how the test for coeliac is supposed to work - if its picked up that it's out of range then you should have been referred for further tests.

Are you able to share what your IgA tTG numbers were?

Ttg shows 0.9 u/ml and IgA 2.96 g/l. The gp didnt even tell me that any of my bloods were out of range I only knew as saw them in the nhs app.

8 years is such a long time. You have really suffered a lot and I hope you are in better health now. I dont think going private is an option for me, I wouldnt be able to afford it.

Consider a Naturopath, the normal range is pretty broad and what is considered “normal” isn’t really normal.

I will certainly mention coeliac to my gp at my next appointment. I've already had blood tests for RA and Lupus etc. My ANA was normal. The only tests taht were out of range was the Ttg and something under bone profile serum inorganic phospate which was 82 u/l and also one under full blood count which was hematocrit which was 0.361.

The dr didnt check my urine and niether any blood pressure checks!

Initially I did have problems with my bowels when i started iron tablets but when i went on ferrous fumerate i was ok. And I dont take iron tablets all the time now. But still have problems. And it causes a lot of abdomen pains when i need the toilet and have to go immediately.