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!

I was repeatedly at the doctors, had many blood tests and was told my symptoms was psychosomatic! It wasn't until I was referred to a neurologist for migraines I found I had coeliac disease around 15 years later. It can cause wide ranging symptoms like your describing. It's also a specific blood test and not done routinely.

I don't want to scare you but it might be worth looking at the symptoms for chronic fatigue syndrome/ME if you are not coeliac.

I've been ill for a while now and unfortunately it looks like it might be this. But definitely check out coeliac first.

I am coeliac. Have been for over a decade. I’m usually fine, I was glutened a few times in August but usually I have a day of sickness and get over it.

My main concern right now is aching, twitching and pins and needles. Doctor says these aren’t serious concerns and my muscle tone, strength and sensation are all fine, not characteristic of any diseases, she thinks vitamin deficiencies and anxiety. I admit I am very anxious, but have suffered depression and anxiety many times before without debilitating symptoms like this. Doctor has done some blood tests for vitamins then wants to refer me to the psychiatric nurse. I’m terrified.

I was tested for this and the IgA was out of range but the gp signed off as no treatment required. Will mention this to gp once again but if it’s not anything else then I’m thinking it really could be CFS /ME as I’m matching all the symptoms there. Thanks so much for your response.

I do match those symptoms, thanks a lot. Will discuss with my gp.

Omg 15 years that’s such a long time. You must’ve been through so much during that time. I’m not going to leave my gp alone until I get answers to what’s happening with me! It’s so hard to cope with these symptoms specially my fatigue. I have two little kids and no energy to deal with them, it’s really heartbreaking as all I want to do is sleep.

Epstein Barr Virus?

What are they saying is normal range for coeliac? I think 2.96 is within normal range but I’m not a medic.

What is your b12 level? Even with 'in range' results, you can still be symptomatic

I had similar, regular migraines extreme tiredness, heavy limbs pins and needles etc. Had blood tests for numerous things receptionist gave me my results and said b12 and vit d were low but when I saw my doc she said my vit b12 levels were fine and fobbed it all off on anxiety. Gave me a vit d prescription but not b12 so I went to boots and got myself a strong b12 spray which I take daily. Migraines improved so did all the other symptoms but I still don't feel totally right. Mine all started after I had covid last November but doc woukdnt consider long covid. I have zero faith in the NHS.

(normal range: 0.80- 2.80) so im just above the normal range i think

I'm well in the normal range for vit b12 and vit D

I was definitely peri menopausal at your age!! Had similar symptoms to you, all sorts of tests for various symptoms from about 36, Got so desperate by the time I was 45 I begged for HRT to try to see if it would do anything end as figured I'd nothing to lose! Was still having regular periods but they were getting very heavy.
Fast forward a few months and I felt a lot better on oestrogen and progesterone but still had lots of headaches, fuzzy head, pressure, occ vertigo feelings and I saw a menopause specialist privately- she suggested adding in testosterone along with tweaking oestrogen dose. Fast forward another 2-3 months and suddenly I realised I had no headaches! No odd fuzzy feeling either! It felt like the blue sky came out of the cloud!

My hair is much improved too. I've been in this since lockdown! So major minor health complaints have cleared up, my gut feels better, IBS settled and I feel much better! Don't rule this out, my specialist said I'd been peri from my mid 30's and struggled along for ages. It had a massive impact on my whole life and I wish I'd have got more expert help sooner. It's hard to get and costs money - I think some GP's are finally more aware of the wide symptoms women can suffer.
Hope you feel better soon 💐

Do you know your actual thyroid results? I'm currently dealing with similar symptoms. My thyroid was borderline a few months ago, I'm actually about to have more tests to see if it's worsened. You can be within range for thyroid but still feel quite unwell because the threshold is very wide.

Very surprised your GP has ruled out thyroid based on your symptoms. Fatigue and hair loss are two of the main symptoms! When I mentioned these to my GP, he immediately agreed to test my thyroid again and felt my neck to see if my thyroid was swollen.

I would definitely ask to have your thyroid tested again. In a couple of years the borderline result could have significantly worsened. If your GP says symptoms don't match, show her the NHS website that lists fatigue, muscle pains and brittle hair as symptoms!

Also could you get a private blood test for magnesium? Also medichecks do a good blood panel, I think it's called.optimum performance.or something like that, it could.help you find something that a GP missed.

I have a friend who ended up extremely unwell and the doc mentioned that her thyroid tests has been borderline for years.
My own doc raised my medication because although I was in the okay ‘zone’ I kept catching things I shouldn’t have.

Can you post your test results here with the reference ranges?

The lab ranges are often meaningless on an individual basis.

For certain things (b12, ferritin, folate and Vit d), I have to keep my bloods at the very top of the range in order to remain well.

Agree with other posters about having your thyroid levels rechecked.

Before I was diagnosed with underactive thyroid, I would have hair falling out while shampooing in the shower, not massive clumps, but lots of strands. Also suffered with the extreme tiredness, by lunchtime I could hardly construct a sentance and think straight. And felt achy and generally unwell.

If I remember rightly, my blood tests were borderline but I was started on the lowest dose possible based on all the symptoms at the time.

I find it shocking that the GP said your symptoms don't fit with thyroid - personally I'd be trying to see a different GP next time.

Appreciate they can be the same for other condition too, but it's worth getting your levels rechecked. Here's the list from the NHS website

Any autoimmune illness in the family? You can ask for antibodies test for thyroid (Hashimoto's) as well as TSH, T3, T4. I have both coeliac and hypothyroidism and had similar symptoms especially fatigue and bloating.