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Anyone else experienced anything like this?

39 replies

PinkHazel · 27/06/2025 20:51

Hi, firstly sorry for the long post but I am just looking for anyone who can possibly advise me in anyway, I know this isn’t a place to get official medical advice but I am feeling like I could do with any options on this or advice from anyone who’s had similar.

Basically about a month ago I went to docs with a long standing sore throat - no other symptoms. I had this 2 months and they referred me on a 2 week appointment to get this checked. In the meantime I had a 2 week family holiday coming up. On the run up to this I would say I had various things in my life stressing me out and when I got the referral this did panic me. The appointment was arranged for after my holiday.

About a week before I went on the holiday, and a week after this GP appointment I started to feel extremely unwell. Symptoms were mainly feeling like my heart was beating really hard in my chest with tightness, feeling shakey, dizzy, sick, unable to think straight and my body just feeling really fuzzy and off. 2 days before we was due to fly, I decided to ring 111 for advice, as I had chest tightness and “palpitations” they sent me to a&e. I got various blood tests and an ECG. They advised me everything was ok and I went home, had a few hours sleep and went to work the next morning as it was my last day at work before I went off on annual leave. I felt horrific that day, I think the lack of sleep made everything worse.

Fast forward to the holiday. I didn’t feel too bad the first week, but the second week I could really feel the symptoms. I think it was easy to put the way I was feeling down to the heat and the nature of holidaying with a toddler as it wasn’t exactly relaxing. As we were on the lead up to coming home I really felt unwell again.

We got home and after two days I became very upset and worried about the symptoms I was feeling (and still am). The latest symptom feels like pain/ pressure which starts at the bottom of my back of head/neck and spreads to my whole head. Experiencing Dizziness, fatigue, feeling sick, shaking, Head / neck / arms feeling fuzzy and achey. Almost like a vibration / pulsing in my head and neck (including ears and even sinus’ at times). Tingling arms and tight chest which I can feel beating. Feeling spaced out like I’m not here (a bit like when you’re drunk). I called 111 again trying to explain my symptoms but realised it was like talking to a Robot and filling in a questionnaire (yes or no questions). The minute I mentioned my chest, the said to go to a&e again. So off I went, but when I met the first nurse she explained they were going to do the exact same tests on me again as I was down as chest pain. They said they couldn’t look at the symptoms collectively as the rest were for the GP. So I left rather than waiting 4 hours for the same results I had previously. She agreed it was the right thing to do. I went straight to my GP on the way home and asked if I could have more bloods done for stuff they didn’t check at the hospital and explained my symptoms. The receptionist booked me straight in for the following week (blood test only it wasn’t an actual appointment with the GP). I’ve had those done and got the results back the next day. Only thing reported was low iron ferritin levels of 17. I had levels of 18 two years ago and never felt like this so don’t feel I can put it down to low iron. I also had my throat appointment which was fine, I don’t even have a sore throat now.

I went back to work this week and really really struggled. For example one morning I felt ok ish.. then after my lunch I felt horrendous again so I went for a walk, when someone walked by me I felt like I was going to fall over as if my balance was off. All the same symptoms alongside this mentioned earlier in the post. Today I feel horrendous again, I rang the GP earlier to discuss all of this but they said I have to ring back next week as there was nothing available.

A lot of people have said it could be down to stress and anxiety. I am very tearful at the minute as I feel like I’m worrying so much about why I am feeling this way. But the symptoms are so real and I feel so poorly I don’t know if I can really put this down to stress/ anxiety. I do believe I have health anxiety and am wondering if I need to speak to someone about this anyway. I am ringing the GP Monday morning but I am worried I am going to be fobbed off. I feel like everyday is a struggle as I just feel so rubbish. What can the GP really do for me? What else can they look at? Has anyone ever experienced anything like this? I feel really alone as no one understands the severity of how I feel and I don’t know what to do. It’s been a month of this now. Thank you for reading :(

OP posts:
Noshadelamp · 28/06/2025 13:17

When you are asked by any health professional if you have anxiety or stress say "no more than usual" otherwise they will keep fobbing you off.

PinkHazel · 28/06/2025 13:34

Noshadelamp · 28/06/2025 13:17

When you are asked by any health professional if you have anxiety or stress say "no more than usual" otherwise they will keep fobbing you off.

Good idea. Tbh even at one point I convinced myself it was but it can’t be! I think I was just getting frustrated and upset about feeling so unwell each day

OP posts:
mamakoukla · 28/06/2025 17:10

PinkHazel · 28/06/2025 13:08

Is this right? for Haemoglobin? Didn’t really take much notice of this on my blood test and it was flagged as normal
HbA1c level (diagnostic reference range) - IFCC standardised 32 mmol/mol

It is possible to have iron deficiency without anaemia; haemoglobin will be within normal range, ferritin (iron store) low

HotHorseRadish · 29/06/2025 10:37

Did you have your thyroid tested as I had very similar symptoms before I was diagnosed with hypothyroidism?

Margot25 · 29/06/2025 10:43

Hi
I’m anemic and have these symptoms. The optimum level for a woman is over 100! Join an anemia group on Facebook and really try and build your levels back up.
you can get ferrous fumate from the chemist.
people don’t realise how bad anemia can make you feel. I thought I had something seriously wrong with me. They rushed me to cardiology with the symptoms
I’ve been on meds for a year and starting to feel better. Takes a few months to see improvements

PinkHazel · 29/06/2025 12:50

HotHorseRadish · 29/06/2025 10:37

Did you have your thyroid tested as I had very similar symptoms before I was diagnosed with hypothyroidism?

Yes had that tested, was all fine

OP posts:
PinkHazel · 29/06/2025 12:51

Margot25 · 29/06/2025 10:43

Hi
I’m anemic and have these symptoms. The optimum level for a woman is over 100! Join an anemia group on Facebook and really try and build your levels back up.
you can get ferrous fumate from the chemist.
people don’t realise how bad anemia can make you feel. I thought I had something seriously wrong with me. They rushed me to cardiology with the symptoms
I’ve been on meds for a year and starting to feel better. Takes a few months to see improvements

it seems like it could well be a lack or iron! However what baffles me is how I was the same level 2 years ago but I was fine then. I have got some supplements now and will see if they improve anything

OP posts:
MassiveOvaryaction · 29/06/2025 12:54

Some of your symptoms sound familiar to me. I was diagnosed with long covid and POTS. The POTS gives me the headache you described, pulsatile tinnitus and makes me dizzy/lightheaded. Now I'm medicated I only get those symptoms when overdoing it/standing too long, but prior to treatment even sitting up was too much and would bring it all on.

If you've got a smart watch then read your heart rate at rest then again when you stand. It's normal for it to go up a bit but usually it settles. In POTS it goes up and stays there. Keep checking every minute for 10 minutes If you can. If GP suggests an ECG push for a 24/48 hour or week long one as (unless there's another issue) an ECG completed in lying will probably show as normal.

Might not be that of course but thought I'd throw another suggestion in the mix. It's a long term condition but it's manageable.

Calypsocuckoo · 29/06/2025 14:15

Do you ever get headaches or migraines? Some of your symptoms sound similar to vestibular migraines.

PinkHazel · 29/06/2025 14:17

MassiveOvaryaction · 29/06/2025 12:54

Some of your symptoms sound familiar to me. I was diagnosed with long covid and POTS. The POTS gives me the headache you described, pulsatile tinnitus and makes me dizzy/lightheaded. Now I'm medicated I only get those symptoms when overdoing it/standing too long, but prior to treatment even sitting up was too much and would bring it all on.

If you've got a smart watch then read your heart rate at rest then again when you stand. It's normal for it to go up a bit but usually it settles. In POTS it goes up and stays there. Keep checking every minute for 10 minutes If you can. If GP suggests an ECG push for a 24/48 hour or week long one as (unless there's another issue) an ECG completed in lying will probably show as normal.

Might not be that of course but thought I'd throw another suggestion in the mix. It's a long term condition but it's manageable.

This is interesting thank you, I need to buy a smart watch

OP posts:
PinkHazel · 30/06/2025 11:54

Calypsocuckoo · 29/06/2025 14:15

Do you ever get headaches or migraines? Some of your symptoms sound similar to vestibular migraines.

hiya no don’t really suffer with headaches that much normally

OP posts:
DemonsandMosquitoes · 30/06/2025 13:42

PinkHazel · 28/06/2025 13:10

Did you feel dizzy, sick and generally weak / unwell? How did you get to the point of your diagnosis can I ask

I saw a private cardiologist (who sent me for a tilt table test to exclude POTS first) and a private ENT consultant who sent me for an MRI and a V-Hit test/private rehabilitation physio.
Felt permanently lightheaded. Couldn’t drive, couldn’t work. Couldn’t afford to wait for NHS sadly.

PinkHazel · 30/06/2025 13:49

DemonsandMosquitoes · 30/06/2025 13:42

I saw a private cardiologist (who sent me for a tilt table test to exclude POTS first) and a private ENT consultant who sent me for an MRI and a V-Hit test/private rehabilitation physio.
Felt permanently lightheaded. Couldn’t drive, couldn’t work. Couldn’t afford to wait for NHS sadly.

sorry you had to experience this. It sounds awful. I’ve not felt as bad the past 2-3 days. I have been taking iron supplements for a week now so fingers crossed it is that.
I bet it cost you a fortune to go private but so glad you got your diagnosis. Just out of interest was anything showing on your MRI?

OP posts:
DemonsandMosquitoes · 30/06/2025 19:59

PinkHazel · 30/06/2025 13:49

sorry you had to experience this. It sounds awful. I’ve not felt as bad the past 2-3 days. I have been taking iron supplements for a week now so fingers crossed it is that.
I bet it cost you a fortune to go private but so glad you got your diagnosis. Just out of interest was anything showing on your MRI?

DH has private medical insurance so I only had £200 excess to pay.
The MRI was clear for acoustic neuroma(which is what they were looking for with the tinnitus) but they did find an incidental finding of cyst on pituitary gland. Unrelated. Causing no issues.
I then went to a private endocrinologist to follow that up, was under three specialists at one point 😁.
The whole several months were horrid. No idea what kicked it all off ? Covid/vaccine or whether symptoms were related.
Still got the tinnitus and palpitations on and off despite the ablation. But will never forget that weird initial pain that shot up from the back of my neck into my head. I was never right after that.

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