What could be wrong with me - has anyone had these symptoms?

[Thetoasterhasbroken]

I know that no one on MN can diagnose me but I am truly at the end of my rope with how I am feeling and I am getting nowhere with my GP.

I have been feeling really crappy for sometime now and just not sure what it could be or what I can do to put myself on the road to feeling better.

I will start by saying that I have had anxiety for most of my life but it has always been quite manageable and hasn't overwhelmed me in the way that it has been over the last few years. Most of the symptoms have been progressively getting worse over the last 5 years but they have been awful the last year and continue to do so.

I wake every morning with excessive anxiety (racing heart, panic, nausea, gurgling guts and a general feeling of panic and unease), it feels as though I wake with very high cortisol levels?

I was diagnosed with IBS 25 years ago but the last year my symptoms have gone crazy and been excessive and unrelenting. I have daily symptoms of nausea, stomach pain, acid, gas, gurgling guts throughout, diarrhoea and/or constipation and a very unpredictable bowel. This all starts the moment I wake and does not ease until at least the evening time

I regularly find myself feeling very, very weak, shaky, light-headed, very panicky and with a weird hunger like feeling. I can only describe this as though I have had a drop in blood sugar levels

I suffer from a sore tongue - was told this is geographical tongue and nothing more said about it

I have TMJ disorder and a very sore jaw - especially right side and grind my teeth at night

I have tinnitus which is worse on the right side

I have thinning hair especially on the temple areas of my hairline, so bad that I now wear a hair topper to cover it

I am exhausted every day and feel like absolute crap from the moment I wake until I go to bed - I don't feel like I even get a restful night as I often wake with a gurgling gut or wake from a heavy dream

I had put a lot of this down to the fact that I had years of very heavy periods due to recurring uterine polyps which resulted in my ferritin levels dropping to 3. After years of suffering with this and my GP refusing to send me for a transfusion I pleaded for one which I had in February of last year. This initially raised my levels to 150 but has since dropped to 18. I can not tolerate iron supplements as they make my IBS so much worse.

I went to the GP about this in October, last year. She arranged for me to have lots of blood tests but apart from the ferritin coming back as 'low normal', they are all (thankfully) as normal (although I notice some seem low normal) but still I am continuing to experience all the above on a daily (often all day) basis.

I do so much to try and feel better - I walk the dog for an hour every day, I eat a healthy low fodmap diet to try to ease my IBS (sadly, not helping though), I only drink water, I don't smoke or drink, go to bed at a reasonable hour, I listen to hypnotherapy every day. I have tried various antidepressants but they all make my gut issues so much worse. I really do not know what else to try.

Has anyone experienced anything like this? What could be causing me to feel so bloody awful, every sodding day? I am so depressed but tbh it's all of these symptoms which are depressing me. I feel so old and knackered!

Has your thyroid been checked? Some of those symptoms could show an overactive thyroid.

I have hEDS and hyper Pots, some of your symptoms are very similar and it is worth a deeper read into both conditions. I'm on beta blockers to limit my heart rate.

CrunchyCarrot I have had my thyroid levels checked recently and they came back normal. My mum has borderline thyroid issues, my grandad had hyperthyroidism and my sister has hypothyroidism and parathyroid issues (waiting for an op to remove the tumour), I’m not sure if thyroid issues run in families?

JollyMollyPolly I have thought for some time that I may have Ehlers Danlos or at the very least joint hyper mobility issues. I have done the Beighton score myself and score around 7/8 but my GP doesn’t take me seriously on this, just puts everything down to anxiety. My mum and grandad also had issues and I think they possibly have/had it too. My son was also born with hip dysplasia (I was born with double hip dysplasia) and since a young age he has suffered from painful knee subluxation but still no one takes us seriously, the paediatrician said it was just one of those things and he will grow out of it! I think that I may need to start pushing this a bit further. Can I ask who diagnosed your condition? Was it a Rheumatologist?

@Thetoasterhasbroken I have had my thyroid levels checked recently and they came back normal. My mum has borderline thyroid issues, my grandad had hyperthyroidism and my sister has hypothyroidism and parathyroid issues (waiting for an op to remove the tumour), I’m not sure if thyroid issues run in families?

Yes they very much do. My mother had Graves (hyper) and I have Hashi's (hypo). If not thyroid disease then it can be other autoimmune diseases.

When you say your levels were normal, do you have the actual numbers? Often doctors will say your results are 'normal' but they may be at the far end of it, as thyroid lab ranges are very wide.

Fibro was my first thought too.

@Thetoasterhasbroken

This video is informative:

Please see your GP OP, we aren't doctors here (and even if we were we wouldn't diagnose without going through the correct protocol).

EllenVannen I have Ben to my GP many many times but they aren’t interested. They just prescribe me antidepressants which make me feel awful.

been

Came to say the same. Make sure you get a full thyroid screen done.

CrunchyCarrot
Serum TSH was 1.51 (normal range 0.27-4.20)
Serum free T4 level was 15.6 (normal range 12.0-22.0)
GP said they were well within ‘normal’ limits so no further action needed.

WiredND I did mention fibromyalgia to GP but she said she didn’t think I fit the criteria for the symptoms?

And T3 levels or antibodies?

Pollywoddles no nothing like that, gp said those levels were all that were needed to make a thyroid issues disganosis?

diagnosis! Phone playing up today

I also wonder if my b12 is a little low. It’s 289 but again within NHS limits of 197-771,
Folate is 6ug (no normal limits shown on that result so not sure what optimal levels should be.
My ferritin was 3 last year but after an infusion it’s now 32 which I’m told is still low but GP says they are more than happy with that figure.
and vitamin d is 67 which again GP says is fine.

I have EDS and in peri menopause everything has got so much worse. The anxiety rush thing - I am on a very low hrt dose which helps (consultant led at an NHS clinic, ask your gp for a referral). I also cut out dairy but I have to now eat v small meals, lots of things I cannot digest any more at all and I don't eat dinner.

I have no suggestions for the low ferritin as I cannot absorb it either (likely due to EDS GI issues).

I went to see a private geneticist for my EDS diagnosis, then to the London Physiotherapy Centre for treatment plan. Do you have chronic widespread pain? As that is a main criteria for EDS. This can also include things like neck/jaw pain, migraine etc from unstable joints - sometimes my pain just feels like fluey aches.

Then go back and tell them that.

Maybe counselling would help (depending on the type of depression you have. It can also help you deal with anxiety)

If you have depression you'll probably feel awful anyway (I've been there) and all medications have side effects.

AceofPentacles I do have widespread pain from top to bottom but have put up with it for so many years that it’s just something I live with. I do score quite high on the Beighton scale but obviously that’s me doing it at home so not sure what I would score if a professional rated me. I have mentioned Ed’s or at the very least joint hyper mobility to my gastroenterologist and she did say it definitely contributes to digestive system issues but my GP wasn’t interested. Said I could try going privately but I don’t think I’d be able to afford that right now. Can I ask how much it was for you to go privately?

EllenVannen I have been back and forth many, many times and have explained everything to my gp but I really get nowhere. Was told that’s all she can offer and I’ve basically to put up with it. I have had years of CBT and counselling (spent a small fortune privately) but it hasn’t had any impact on my physical issues and have tried various antidepressants but they exacerbate my gut issues to the point that I can not leave the house.

The assessment with the geneticist cost around £500 I think.

Sounds a lot like atrophic gastritis. Could be autoimmune in nature or could be as a result of h pylori among other causes. Worth mentioning it to GP. https://www.medicalnewstoday.com/articles/322153#symptoms

spuddel they did take biopsies of my stomach lining when I had a gastroscope but that was 4 years ago and my symptoms are getting worse. I have a gastro appointment for the end of September, I will ask about this when I see her, thank you.

Thanks AceofPentacles