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!

I've no idea except I've had most of that post my last covid infection except my ferritin went super high, about 400 I recall.

Hair is starting to grow back now 9 months later.

I've had batteries of tests and an MRI the closest the neurologist got was Rheumatoid arthritis and post Covid nervous system disorder.

I'm much improved overall now except for the TMJ and am starting to look at potential EDS causing a connective tissue disorder which would tie in with your gut issues too.
Have a look at this Facebook group to see if anything chimes for you.

I've also started the drug LDN on private prescription which has made a massive difference.

Thank you stayathomegardener. Although I have had most of these symptoms before I got Covid, it probably has been worse since then (I had Covid June last year). It interesting you mention EDS as I have been thinking for quite sometime that I may possible have this, or at the very least joint hyper mobility. I score highly on the Beighton score and believe my mum and grandad had it. My gp basically laughed at me when I mentioned it.

What is your actual ferritin now? Low normal might not be the optimal level. Doctors think low normal is normal but we need to be at optimal level to have no symptoms.

Check out the iron protocol group on FB. Loads of women there have similar symptoms to yours and all have low ferritin.

Nets888 ferritin was 18 when I last had a blood test in October 22, obviously that could have dropped even more over these last 7 months but GP said it as it was still within ‘normal’ range and the ablation had stopped my periods then no further action required. I have booked another appointment with her in June but will ask for another blood test before to recheck. I am on that FB group but thanks for the recommendation.

If you look at the NHS's Clinical Knowledge Summary for iron deficiency, you will see that ferritin of 30 is the cut off for confirmed iron deficiency, so you may well have been deficient for some time, which causes all sorts of symptoms.

Sorry you're going through this. Some of your symptoms sound similar to mine when I had a vitamin B12 deficiency (sore tongue, thinning hair, racing heart, exhausted) so it might be worth getting that checked out.

TheOtherHotstepper when my gp looked at my results she said it was ‘fantastic’ that I had been at a 3 for so long and now was at 18. She seemed to see that as a great result even though, as you say, this is still classed as very low. She didn’t seem to want to discuss it further. Luckily, she is on maternity leave so I will be seeing a different GP next month, so fingers crossed they will be more helpful.
DontMakeMeShushYou I honestly thought that I was B12 deficient as I do appear to have so many of the symptoms but I had my b12 checked, it was 263 in October the GP said this was a good result!

I know this was a while ago just wondering managed to find out what was wrong. Do you take any regular medication ie antidepressants?

Could it be that you have some trauma stored in your body and it's coming out like this?
If so, you could try doing something like trauma release exercises from YouTube

If FODMAP eating hasn't helped, could it be that you have gallbladder or bile duct issues, rather than IBS. I'm not a medical person but I have some of these issues and going FODMAP, getting beta blockers and a few other things had a major effect on my depression. I've read depression can be a factor in the physical conditions. Have you looked at every aspect of your environment, do you have a carbon monoxide monitor, a lot of plastics in your home or even animals in your home, do you hoover adequately. I know that sounds condescending, sorry but these things can be a hidden stressor for various physical reasons and be affecting your immune system.

I don't know anything about anything but see if you can get your thyroid checked.

Kcheey I have tried various antidepressants but they have all made my issues worse unfortunately.
PTSDBarbiegirl I haven’t tried beta blockers, have they really helped you? I may ask my gp bout those. I am quite into ‘natural’ ways of living so don’t have a lot of harsh chemical cleaners etc, I won’t have plug ins or air fresheners etc. hoover regularly and we do have a carbon monoxide tester (although no one else in my family have these health issues so it’s really within me).
OctogenarianDecathlete I had a full panel of various blood work recently and they all came back within NHS li it’s including thyroid.

PTSDBarbiegirl I had an upper abdo scan a month or so ago, they said all looked good and no gallbladder issues. I am waiting to have a seCHAT scan to check for Bile Acid Malabsorption.

I honestly thought that I was B12 deficient as I do appear to have so many of the symptoms but I had my b12 checked, it was 263 in October the GP said this was a good result!

A B12 level of 263 is actually pretty low. You can have symptoms when you fall below 400. I was diagnosed with Pernicious Anemia when my B12 was 285.

Assuming you're not taking a B12 supplement it might be worthwhile to have your level tested again. Wonder if it's dropped since October?

GulfCoastBeachGirl I had bloods taken again in June and B12 came out as 289 so higher than in October but obviously not by much. GP not too helpful though says as it’s within the limits there’s not a lot she can do. Was your b12 deficiency diagnosed under the NHS?

I'm in the US. A routine blood test came back with a B12 level of 285 which prompted the doctor to order an antibody test. To my surprise it came back very high, way out of range. I've really never had any symptoms! I self inject once a month now.

Labs here also set the B12 "normal" range pretty low, but there is a notation stating that people can have symptoms at levels below 400.

I'm not saying your symptoms are B12 related, but I wonder how the GP would feel about you giving supplements a try? If you feel a benefit...great! If not, you're certainly no worse off.

Hope you get to the bottom of things and start feeling better. Take care.

Have you been checked for coeliac disease?

Ferritin was a total game changer for me. So many things improved I wouldn’t have thought were connected

The reason I asked is they can have some nasty side effects and withdrawal symptoms which are often not fully documented and gps often dismiss them. Sertraline if one I know to have very nasty side effects similar symptoms to the ones you said, maybe something to consider 🤷‍♀️

GulfCoastBeachGirl I suppose I could try supplementing and see if there is any improvement, thanks.
PragmaticWench I have, via both a blood test and biopsies during a gastroscope.
HopityHope I have some iron infusions last year as my ferritin had dropped to 3, it really helped my energy levels but sadly not the digestive issues.
Kcheey I agree, the side effects really can be awful, my gp is always trying to get me to take antidepressants but they all make my digestive issues so much worse, Sertraline was the absolute worse for me.

Peri-menopause?

Endometriosis?

Aquamarine1029 yes, it’s all been so much worse since being in perimenopause sadly I haven’t found a hrt combo which suits me yet. I back for a review in a few weeks so,will ask the gp what other options I have.
Littlemissprosecco I often wonder, my sister was diagnosed in her mid 40’s after years of issues. I am on a waiting list to see a gynaecologist, just another 9 months to wait!

Fibromyalgia?