Endless unexplained symptoms

[ForevermoreAnxious]

I've had loads of vague unexplained symptoms for well over a year now. Breathlessness and air hunger, body aches and pains, numbness and tingling, chest pains, heart palpitations, stomach issues, dizziness and light headedness. I've had loads of tests, all the usual blood tests, FBC, iron, vit D, thyroid, LFT. You neme it I've had it. My doctor's are saying there is nothing seriously wrong with me. My main concerns are there is something wrong with my heart. EcG and heart monitor say otherwise. I'm concerned.i have cancer or a brain tumour. I do have quite bad health anxiety and OCD but I've had it for nearly 15 years and never felt as bad as I do now. I'm constantly exhausted. I have no energy. I'm always in pain. I always feel like I'm gasping for air. I don't know what I'm supposed to do now. I'm just not getting anywhere and everyday is a huge struggle for me. I have a toddler too and I just feel like a shit mum because I've never got any energy to do anything with him. I've either got no energy or Im in too much pain. The constant worrying that something is wrong and one day I might just drop dead is eating me up inside. What can I do now?

Get some counselling to deal with your health anxiety.

Honestly OP it sounds like stress and cortisol dominance.

When I was burnt out I had many of your symptoms especially air hunger, palpitations and breathlessness.

Are you feeling overwhelmed?

I'm always feeling very overwhelmed and anxious BUT mostly because of my symptoms, I'm worrying about having to hen all the tim and always feeling so unwell. I've had a cortisol blood test which was borderline low so I've been referred to Endocrinology but they don't seem to worried and said it's just the guidelines.

I've had 13 years of therapy and CBT to no avail unfortunately plus medication to try and control my anxiety and intrusive thoughts. None of which have worked.

I have all the same symptoms as you which started after having my second child! Do you know what your ferritin number is?

This time last year my ferratin was 8 and they gave me iron supplements. Its now 11 and they are saying this is classed as within the normal range but not optimal but never the less this would t cause me to have these symptoms as my body isn't actually lacking in iron circulating in my blood.

You can pay for a well woman type blood test online, there are lots of companies that do it. What the nhs says is “in range” isn’t always optimal. Cortisol you can do a saliva test at several times during the day to see what it looks like compared to optimum. Again I don’t think I would get that from the nhs.
i think it would be sensible to check
thyroid
iron
b vits
cortisol
gut health
diet
exersise
perimenopause
depression

long covid
fibromyalgia
autoimmune conditions
celiac etc

these call all cause these sort of symptoms. Good luck op

Thanks. I have had all of these tests though at least three times in the last year and all within normal ranges. Except my cortisol which I am being treated for. I'm not perimenapausal as I am only 31. My Gzp has suggested that I may have fibromyalgia and has tested me for celiac, lupus and rheumatoid arthritis all of which were negative.

My neighbour has fibromyalgia and it started with the same symptoms you are describing. I don’t know what tests they run for it, but I would push to get that assessed.

My GP has mentioned that I could have this and said it's a diagnosis of exclusion. I've been tested for other auto immune conditions which they have said I don't have.

Ask to be referred to rheumatologist if they suspect fibro, they can diagnose. Good luck, I have fibro and most of the symptoms you have explained. I also have other conditions that were blamed on fibro.

I would ask for a referral

Can the GP not diagnose? Looking over my notes he has written "tender over all fibromyalgia trigger points, bloods then review, likely fibromyalgia". So does this mean I have it or not? This was about five weeks ago and he hasn't contacte d me for review.

They say ferritin of 11 is in ‘therapeutic range’ but I feel dreadful if mine is below 20. My Hb is always fine. I get shortness of breath, fatigue, palpitations and invasive thoughts. I’m on iron and I know when I miss the iron tablet, the thoughts are worse. I thought maybe it was incidental but if you looks there’s lots of studies to back it up. I would push to start iron tablets again. You should stay on the iron for at least 3 months after its increased and stabilised.
People have queued Fibro - do you get pain or tenderness?

I may well just go and buy some iron tablets from the pharmacy. I have questioned my ferratin so many times and they just say the same thing that's it normal range. I am always in quite aot if lain, especially with my lower back, legs, feet and ankles. Sternum, arms and shoulders. All over pain ti be honest. Even the slightest touch in certain areas of my body will hurt. For example if my toddler pokes me of is sitting on me and poking me it can be quite painful. I struggle especially in the morning or after a period of immobility because my joints especially me knees or ankles will be stiff and painful and some days I can't stand up straight without being in measurable pain.

I had had all these symptoms when my iron was low. 11 is very low - following guidelines from south tees hospital -

FERRITIN guide to interpretation:
Low: Less than 15 ug/L
Borderline: 16 – 40 ug/L
Normal: 41 – 400 ug/L
High: Greater than 400

I insisted on a prescribed iron supplement from the GP - it made a huge difference to me. I now take a maintenance dose of iron from the health food shop.

Thanks. The way it was explained to me was that because my hb is fine then there is enough iron circulating in my blood. My ferratin apparently at 11 is within normal range and only means that the ferratin is the stores or iron in my body which are not being used because they are stores so it doesn't matter that it's 11 and that's why they aren't concerned or prepared to give me supplements because I am it actually deficient. Apparently.

Keep a symptoms diary for the next few weeks. Dec is busy so try to make sure at least 2 weeks running you have a normal week.

Log your sleep - hours & quality - meals & snacks, exercise & exertion, along with symptoms (including level of fatigue). This will help your doctor see a pattern, if one exists, and show whether there are any gaps in self-care. Assuming there aren't, it will help with a diagnosis.

Also log any anxiety or panic attacks - this is for your benefit, you might start to notice a pattern or influencing factors that helps you to manage your anxiety better (and more you can do this, the more the medical profession is likely to take you seriously).

Does sound like your gp is doing the right things though. Hang on in there, it can take time to get to the bottom of.

I was diagnosed 10+ years ago by rheumatologist and then when I moved area about 5 years ago my new GP sent me to rheumatology when I was questioning the diagnosis. They confirmed the diagnosis (although as mentioned I have since been diagnosed with other conditions, all my symptoms mashed together)

I’m not sure if a GP can officially diagnose, maybe they can now due to waiting list pressures??

@StBrides this is really good advice. I always forget things at appointments, even with a list. A diary everyday will be very helpful.

I know GPd have guidance on diagnosing Fibro in my area but they still tend to ask Rheumatology to confirm. As OP said though, it’s an exclusion diagnosis and I do wonder if the ferritin is contributing.
OP I’d push for iron tablets. You can absolutely be symptomatic with low ferritin and normal Hb! You can buy iron tablets OTC but you’ll need a repeat blood test after 3 months to make sure they’re helping.

I’ve just double checked and ‘normal’ ferritin ranges in my area are 20-130 so 11 would warrant treatment if you lived here!

I had similar and I also had sternum and rib pain, I ended up going to a chiropractor and she put my ribs back into position and my diaphragm was out of position. She said it was Tietze syndrome/costochondritis. It has pretty much stopped my palpitations and breathy feeling. Like you I was feeling like there must be something terrible wrong with me, I had ecgs and other tests and I really lived in fear that they were going to reveal some awful disease.
my doctor also tried to treat me for ‘health anxiety’ but miraculously as soon as the chiro resolved my symptoms, my ‘anxiety’ also disappeared. It’s so easy to brush off women as being ‘anxious’ when actually they are ignoring the fact that we have collections of symptoms that are making us feel utterly dreadful and not getting any answers or support.

This time last year my ferratin was 8 and they gave me iron supplements. Its now 11 and they are saying this is classed as within the normal range but not optimal but never the less this would t cause me to have these symptoms as my body isn't actually lacking in iron circulating in my blood.

it's not normal. You need at least 70-80 to feel halfway decent. I went years ago to the GP because I felt tired, palpitations, tight chest... mine was 22 and I was put on heavy iron supplements (200mg ferrous sulphate 3 times a day). I would go to the pharmacy and get some iron and change GP. That's really poor. a ferritin level of 11 is absolutely not ok and a GP should know that!

once my ferritin went up (took 3-4 months of supplementing), I felt normal again.

Join the iron protocol group on Facebook. Your symptoms fit low iron especially the air hunger. You'll get a lot of support there.

I would aim for top of the range. Three arrows heme iron gets a lot of good press if you are looking for a supplement