Where would you go next with these symptoms?

[Mumma02]

I am so fed up of dealing with an ever growing list of constant symptoms with no answers about what is wrong! GPs have tested my bloods multiple times in fairness but always say nothing is of concern and don't know what is wrong or how to help me.

For almost the last 2 years I have suffered with bouts of nasuea, feeling full quickly, pins and needles, crawling feeling on my scalp, burning skin, low blood pressure, tachycardia, ectopic beats, muscle aches in arms and legs, adrenaline/panic attacks, temperature dysregulation so feeling hot and cold at the same time or sweating too much or recently shivering uncontrollably like with a fever. Sensory issues - being sensitive to noise, a small noise feels like my brain shakes? Internal tremors, muscle weakness, metallic taste in mouth, chest pain, burning feet and legs, eye focus can be off, dizziness, vibrating nerves, crackling noise in ears, headaches, fatigue, breathlessness and more recently my periods are all over the place, last month was 2 weeks late and I'm a week late and waiting again this month. I'm 33.

I have apparently normal full blood count, normal brain MRI, normal nerve conduction test of arms to check for carpal tunnel, normal 24 ecg, normal heart echo, normal chest x ray...they don't know what to do!

Something is obviously wrong - these symptoms started around a year after I had my son and 10 months before I had covid. What would you do? Who should I try and seek help from?

These symptoms sound like severe anxiety to me. When I was in state of permanent anxiety and panic for weeks I had pretty much every single one of these symptoms. Has your GP mentioned mental health to you?

I’d say anxiety and if you are of the right age, peri menopause.

Have you been tested for celiac disease?
After my middle dd was born I had very similar symptoms to you.
They put it down to depression, it was only after I had a certain condition in my eyes that was associated with arthritis that they did the blood tests as its an autoimmune disorder.
If you haven't ask your doctor to check.

I have a lot of these but that started after I had Covid, are you sure you didn't have Covid before ( perhaps before tests were available)? I also have IBS which does have some dietary triggers that took me a while to work out, but by far the biggest trigger is stress.

Anxiety/stress?

I really, really don't think it's anxiety. For example now I am lying in bed and both my legs are burning. Sometimes I will stand up and feel as though I am about to faint. POTS has been mentioned but this should be secondary to something else and it doesn't explain all of my symptoms. Also chronic low blood pressure - wouldn't that be high with anxiety? My head literally feels empty from lack of blood sometimes. I was tested for celiac just under 2.5 years ago. That was negative but inflammation marker was just above normal range. At this point I am praying for a positive result of anything just to treat it.

Anxiety, stress, other mental health condition.
Chronic fatigue syndrome.
Coeliac disease.
Post viral ?

early onset menopause? Worth getting on the balance app and having a good read through. menopause/ low oestrogen affects every aspect of a woman’s body. Vasomotor symptoms as well as severe anxiety even the nausea could be indicative of a drop in essential hormones.

What's your ferritin level?

I think I'd find the money to see an endocrinologist with an interest in cfs.

Has your thyroid been tested?

I have many of the same symptoms and this year have seen a neurologist and ENT who said migraines and my GP said anxiety. I know it’s not anxiety. I’m 47 and just had an appointment with the Newson clinic as I feel it’s probably peri menopause and the GP there agreed with me. Worth a try.

I'm 34 next week and early menopause doesn't run in my family so I don't think it's that. FSH levels last month also normal. Thyroid is always around 1.5. Ferritin is currently 25 but again it wouldn't cause ALL these symptoms. Wondering if a neurolgist or an endocrinologist is the way to go?

A ferritin level that low would cause all those symptoms.

Anything under 30 is absolute deficiency. I have had a ferritin of 17 a couple of years ago and felt horrendous, almost like I was dying. The GP who diagnosed my low iron literally saved my life when she told me to take prescribed iron and now, nearly a year later, I'm feeling much better. My ferritin when last tested was 47 and had probably increased since but anything over 100 is what it needs to be in order to be an optimum level.

Lots of labs have a range that is definitely not high enough. I'll see if I can find something that shows different symptoms at different levels and you can see how much low iron can affect everything.

It even made my involuntary neurological movement disorder worse as iron can affect dopamine levels.

I also had internal vibrations and felt like my brain was shaking and vibrating. I was totally convinced I was perimenopausal buy a visit to a private gynaecologist told me that I wasn't. It's amazing how much a deficiency can affect you.

The Iron Protocol for the UK Facebook group... your symptoms read very similar to lots of people on there OP.

POTS
ig go and see a cardiologist specialised in POTS (privately p. It can be very hard to get diagnosed)

Found it

POTS isn’t secondary to something else though.
Not sure why you think that.
So ec deficiencies are often associated with POTS such as low vitD, B12, iron, folate. Working in those can help but won’t make it all go away.

I had all of your symptoms and more. I still have tinnitus and terrible bleeding sore gums at times, and my anxiety and empty headed feeling was dreadful when it was really low.

Another vote for proper thyroid testing.

I had the majority of those and it was chronic anaemia, low ferretin and folic acid. Iron infusion did help...

TSH of 1.5 might be an indicator of encroaching hyperthyroidism. Have your T4 and T3 been tested? GP's tend not to do them. The levels can also undulate for years until the gland goes completely bonkers.

I recall:

Feeling hot
Feeling shaky
Not gaining weight despite a huge appetite
Constant tummy problems
Overwhelming tiredness
Frequent stitch on exertion
Perspiring

For years - went to the Dr twice. First time tested iron levels; second time told me to think about my lifestyle.

And then my legs swelled horrendously. Went to the company Dr. She was concerned. Took bloods. Called soon after to say TSH was non existent, T4 was through the roof - sent me straight to an endocrinologist - that afternoon because they were concerned for my heart. It was fine.

It was over 30 years ago.

Have they looked into the possibility of thyroids? This sounds very similar to what my sister was experiencing, and dr kept putting it down to peri menopause. Turns out it was thyroids and she's now on medication for it. Worth looking into?

I could have written this myself. It's taken me years of back and forth and finally going private to get some answers.

I haven't posted on here for so long I can't work out how to private message, my story may be a bit outing if I discuss it publicly but I'm happy for you to message me directly if it might help you.

@Frazzledcat yes please!