Need help with symptoms - pots?

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I’m really in a state at the moment where I’ve been feeling unwell for a while and I’m confused.

i had a viral illness start of December which I experienced heart palpitations, breathlessness, fatigue and low energy. Since then, I’ve got constant heart palpitations, fatigue, low energy, a constant lightheadedness woozy feeling but I never wobble or lose my balance or faint. I also have very pale skin, lots of hair loss and achy muscles which twitch.

i went to the doctors after having a vertigo attack in bed when I had a full on congested cold and explained everything and he’s convinced I have pots. I mentioned my ferritin and said could all this be because I’m low and he shrugged it off. But all my symptoms point to low iron? My ferritin has ranged between 27ug/l and 48ug/l the last couple of years but I was on desogestrel and had no periods and now I’m off this and having periods again.

im also cold all the time especially hands and feet and have been waking up nauseous. I do have anxiety too.

im just really scared if it is pots or if I’m getting really scared for nothing if it’s just low iron and can be treated?

I’ve been anaemic before after having my daughter 7 years ago .

any help please x

Sounds like anaemia

Do you think so? I’m in such a state of fear :( I really hope it is. Can it make you feel this poorly though?!

Are you taking iron supplements? I was feeling cold, losing hair, really tired etc before supplements. Feel great now.

Anaemia can make you very poorly indeed. It’s not just a lack of iron; it’s effectively the restriction of oxygen around the whole body.

Definitely get your iron sorted before jumping to POTS. I'd also say that even if it is something similar to POTS it is very early following a viral illness - it may be something that resolved if you take care of yourself and your iron levels.

Push for iron supplements, and take them with vitamin c.

I understand your worry, but disbelieving your Dr and coming onto a forum full of people who aren't Drs to ask them to rediagnose you, is wild.

Believe your Dr or get a second opinion from a Dr.

Could the virus have been Covid? If so, it sounds like you could have Long Covid - POTS is often part of that.

It is possible to recover from it but not straightforward.

Things to do if this seems to be the case.

See your GP. But most GPs aren't very well informed about Long Covid, so go prepared.

Download the instructions for the NASA Lean test from the Bateman Horne website and get someone to help you with it.

Drink at least 2L fluids and electrolytes a day, start as soon as you wake.

Take a look at Dr Boon Lim's website and get a referral to a cardiologist who's familiar with Long COVID or go privately if you can/have insurance.

Work out if you have other symptoms and start reading the series of books by Dr Robert Groysman, start with the dysautonomia one.

Don't do vigorous exercise as that will make you worse, floor based gentle yoga is good - Groysman goes into it all.

If it is likely Long Covid, consider the Suzy Bolt RRR programme.

(I have Long Covid, this is what I wished I had known early on when doctors were gaslighting me).

Also, cold hands and feet and anxiety are both symptoms of Long COVID. Read Groysman's books on endothelial symptoms and also the mitochondria one. They're about £7.50 each for the Kindle editions. I've only just discovered them.
Find out if there's a Long Covid clinic or specialist in your area and be prepared to advocate strongly for yourself.

I get that, but the doctor was quick to shrug off low iron and say pots. When in reality a lot of symptoms of pots are low iron issues? I’m asking on here incase anyone has else experienced the same as me.

No I’m not on any iron supplements at the moment. I have bloods booked in next week to check ferritin.

Bloods are important here. Iron deficiency could cause all the symptoms. I'd imagine your doctor has suggested pots as it appears triggered by a viral infection. I wouldn't start taking iron supplements until the bloods have been done though as it can skew the results. Suggestions of upping water intake & electrolytes in the meantime a good one.

I thought this! I never tested when I was ill in December but it must have been Covid or flu. Never ever had symptoms like that before with colds or anything.

the only reason the doctor said he’s convinced it’s pots is because my heart rate is normal laying down and spokes high when I stand up. But I still get heart palpitations laying down as well.

Also, particularly if you are vegetarian/vegan b12 deficeny can cause anemia in the same way that iron does so worth asking for these levels to be included in your bloods

If you have a blood pressure monitor (they are cheap) you can 'diagnose' yourself with POTS.

You lie down for bit, let your heart rate settle then take your blood pressure and heart rate. You then stand up and stay standing and still and take your BP and HR multiple times over the course of 10 minutes. If your BP is much the same standing and lying and heart rate goes up by more than 30 and that heart rate is sustained, then it's POTS. Although as PPs have said, maybe you still have some post viral issues: So do the test now if you want to and do it again in a month for so.

Another sign that it is POTS is the treatment working and again you can try this.

-low dose zinc

• have electrolyte drinks Nuun for example.
• drink lots of water/electrolyte drinks - 2 or 3l per day.

I do have POTS. The other week, I tried not having the electrolyte drinks and felt awful.

Do you have ADHD or autism or are you hypermobile? These are all comorbid with POTS.

Another possibility is ME/CFS, which I also have. It is also comorbid with the conditions mentioned in my PP.

There's no test for Long Covid and it's a multi-system syndrome.

Groysman's advice is to start with the most debilitating issues which for you is the dysautonomia and go from there. His books have been the best source of information for me, alongside the Suzy Bolt programme. I have no affiliation to either of these!

There are a lot of lifestyle measures which can help, potentially including a low histamine diet but you also need expert medical support.

Arm yourself with information and go back to the GP knowing what you want to ask. É.g most people find H1 and H2 prescription antihistamines help and the GP can prescribe those, although many refuse as it's off licence.

There's also a food supplement called Augmented NAC which made me feel a lot better in days - it helps detox the spike protein and is a powerful antioxidant. You need to take activated charcoal for 2 weeks beforehand to help avoid nausea. It's quite expensive but worked for me - not everyone gets on with it though.

When I went to the doctors he did take my blood pressure and heart rate laying down and then standing up straight away. he only took it once as soon as I stood up, not over 10 minute duration. It went from 84 to 128. And blood pressure was fine he said. But I did have a panic attack the night before had 5 hours sleep and was extremely anxious at the doctors I did tell him that.

I don’t have adhd autism or hyper mobile no xx

Do the NASA Lean Test at home if you have a BP monitor. GPs aren't thorough enough, my specialist consultant asked me to do it.
You can download that instructions from the Bateman Horne website.

He might have been looking to see if your blood pressure went down on standing. He probably didn’t have time to spent another 10 minutes taking your blood pressure. I would recommend you buy own BP monitor and do the test yourself. It’s good to have one for all sorts of reasons. I check mine regularly.

Hi sorry for delayed response.

i just wondered, I took my heart rate with an app on my phone this morning and sitting down was 75 then standing up for a minute was 98 then after 3 and 5 minutes it was 101 and ten minutes was 103. Is this normal with pots? Or does heart rate not always spike over 30bpm? Xx

You need to lie down and then stand still for 10 minutes. You need to also use a blood pressure monitor (they are cheap).

So lie on your bed - I’d say for probably about 10 minutes to let your heart rate settle. Take your BP and HR (a blood pressure monitor does both).

Next stand up next to your bed and stay still for 10 minutes and take your BP and HR every 2 or 3 minutes within those 10 minutes.

If it’s POTS, your HR will rise by at least 30 for a sustained period and your BP wi stay much the same.

Has your thyroid function been tested? Hypothyroid (under active) can cause hair thinning.

I had a lot of these symptoms post covid, apart from palpitations, along with an awful lot of pins and needles in feet and strange buzzing in muscles, - it did eventually clear up after a lot of supplementing, deep breathing and beta blockers for anxiety but took 9 months. I would initially get a full blood check on vitamins - I was low on vit D, slightly low on B12, and in my case far too high on iron . !! It’s a starting point .

Honestly I could not have believed that a virus could cause such an awful long lasting shitstorm . My back of the head headaches /neck pain was off the scale - and this really weird spacey feeling like you were going to feint. I ended up paying to see a top neurologist as was convinced I had MND or a brain tumour or MS( at best) - actually she was wonderful in a brusque matter of fact way and told me why it was unlikely to be any of these . Her advice to me was up the vit D, B12 mouth spray , fish oils every day, wim hof breathing for 20 minutes twice a day , lose some weight( gulp! ) and go gluten free 6 months as it can help with inflammation and in my case stop taking daily vitamin pills with iron ( this was due to my levels) . Lots of pacer walking and lots of water - she did say she had seen a ton of cases similar, some it seemed to cause heart and palpitation issues, others it was very much the nervous system . Start with full bloods OP and yes do the home test ref POTS as someone mentioned above. That isa common post virus issue too

Sorry you went through this :( it is so shit isn’t it. I’m just in such a state at the moment I had a panic attack last Monday night and have been off work since due to feeling awful afterwards and not managing to eat properly and I’m constantly checking my heart rate every day and throughout the day and feel woozy all the time even laying down. I’m just fed up xx