I will be getting some bloods done next week , as my heart rate keeps going high like literally 120 stood up and 90 when am sat down but when I lie down it drops to 55.
I’m just at a loss as I’ve had problems with my iron but been on supplements for a few years now on and off .
Sometimes my skin does itch , but I just don’t know why this keeps happening?
mid my bloods show it’s not my iron or thyroid then what else could it be ?
have mentioned POTS before but doctors look at you like your silly .
I’m also autistic and I feel like doctors don’t always take me serious and think am lying when am telling them my heart is high than what it usually is for me .
what other symptoms would I experiencing if it was my thyroid? Thanks
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There are many lists of thyroid symptoms available on the net. Heart rate changes like you have described is not a thyroid symptom. I have POTS, hEDS, MCAS btw.
People on the spectrum often have a gene mutation called MTHFR which affects the way their body processes B vitamins. You can have normal blood results but actually have less than enough at tissue level causing symptoms. Your GP is unlikely to know anything about this!
Perhaps get some bloods done for thyroid, folate, ferritin, B12 and D3. Post the results here and people will comment and make recommendations. if not thyroid then vitamins may be the best way to go and you may need extra B's.
Thanks but heart rate changes are a thyroid problem which is why my doctor suggested it ? I’ve also a friend who had heart rate problems and it was her thyroid
Oh for sure heart rate changes can be thyroid but there's actually a high percentage of people with POTS that also have a thyroid condition, so the treatment for hypothyroidism isn't enough.
You have described an orthostatic (when you're upright) change in heart rate which is part of dysautonomia. Dysautonomia or POTS is very common in the neurodivergent community. If the diagnosis turns out not to be thyroid, which it still could be, then B vitamins may be your issue. You did ask what else it could be. 🙂
Are they going to test your thyroid antibodies btw? Sometimes these can be positive when your thyroid results still look reasonable and a positive antibody result points towards autoimmune thyroid.
I’ve been struggling with this since 2019 before the pandemic in December I became unwell ! My foot and hand had swollen , I had a rash across my face , I felt like I had been poisoned my stomach felt really bad , not like an upset stomach more like a poison way ( not that I have been ) I went to A and E and they checked me over , one of the doctors said looks like SLE , and then he said possibly a virus. Since then I had on going issues with lumps under my hands , swollen hands , also when I take medication I felt like completely out of it 😢. Confused , slurring words , dry mouth , dizziness.
Then a few months later I started taking iron and the same thing happened feeling out of it etc confusion.
Doctors just don’t believe me and I’ve tried everything I can .
Although I’m not in pain there’s something not right and we know are own bodies .
I was referred too rheumatologist they did bloods but nothing at all just something regarding protein levels but obviously nothing that made them wanted too investigate more .
I know this all sounds crazy but I’m scared that my heart rate keeps going this high as it makes my back hurt just an uncomfortable feeling .
I also get like a cold full ache across my whole rib cage usually before my periods it’s so painful.
The doctor checked for lumps etc but that’s it .
I know they are struggling etc but I just want someone too help me as I have too cancel appointments because of how I feel regarding my heart rate .
Honestly, I could have written more or less what you have years ago. You sound like a bendy, hypermobile person. Doctors don't have the knowledge yet to understand or help us and I wish I knew then what I know now.
Can I suggest you eliminate dairy, gluten and soy from your diet? It helps many hEDS people with the swelling and flushing. Can also be histamine intolerance possibly.
Have you had your vitamins tested lately by the GP? If not you can buy blood tests online at somewhere like Medichecks. Do get them to check your thyroid antibodies when the GP tests you next week. You might benefit from extra B vitamins but they have to be the active form.
I’ll be getting a full blood works done hopefully next week the last time I had bloods taken was December as I had emergency surgery for a detached retina, and they obviously were okay with them ! It’s just mind blowing all this .
Really struggling and I do worry so much but I’m not getting any chest pain which is something I’m frightened of .
I’m not putting up with it anymore but I get so burnt out doing all the fighting with doctors it’s not fair 😢.
Never ever accept that they tell you your blood results are OK, especially for thyroid and vitamins. Ask for a printed copy, bring them here and post the results with ranges.
You need thyroid levels including FT3, thyroid antibodies, ferritin, folate, b12, D3.
Yeah I’ve had a few copies off them my b12 is always 800 my vitamin d was low but been taking supplements for two years now .I’ll post them up once I’ve had them done thanks for the help
Just a quick question, I know POTS is usually diagnosed when heart rate accelerates on standing but are there blood pressure changes as well. My GP did a standing and sitting blood pressure check the other day and sitting my BP was 122/80 but as soon as I stood up it dropped to 110/73.
I have joint hypermobility/EDS and underactive thyroid and wondered if low BP on standing could be causing my issues with balance. I don't get them sitting down only on standing and moving.
Blood pressure has nothing to do with POTS, that's purely heart rate changes although other autonomic symptoms do come into play. A BP drop on standing is Orthostatic Hypotension, tends to cause more dizzy, light headed type symptoms along with a few others. Treatment is similar to POTS though.
I've had a quick peek though your old posts. What type of B12 are you having? Also what type of Folate are you supplementing with?
I'm only a month or so into supplementing and switched from a lower dose B complex to an individual folate capsule (due to having a blood test soon) and felt the difference on the 2nd day. See how you go with what you are taking but a slightly higher dose might help the balance.
Lastly, have you tried dietary changes? Many of us hEDS people are dairy, gluten soy intolerant.
I get B12 jabs every 3 months. All my ferritin, B12 and Vitamin D levels were excellent. Folate was low so I'm using folic acid as methylfolate wasn't helping. I think its a vestibular issue if I'm honest but I have EDS, Fibro and struggle with feeling lightheaded if I stand for too long. I've had that for as long as I can remember.
My temperature control is pretty rubbish as well. And I sweat more than normal on exertion. I definitely feel I have aspects of dysautonomia, like fast heart rate, IBS and palpitations. I was just curious if POTS could be in the mix. Thanks for the reply. I eat very little dairy and am mostly gluten free.
Certainly sounds like dysautonomia. It's strange the methyl folate didn't help. I do wonder if you needed more of it? Folic acid isn't good in the wrong body, there's a number of other types of folate to try before resorting to folic acid which would be bottom of my list if at all.
It would pay you to learn about the different types of B's. You didn't say which type you get for B12 but it can make a huge difference. B12 isn't just B12.
I get NHS B12 jabs. Hydroxocobalamin. I also use B12 mouth spray in between jabs. I was taking 400mg of methylfolate daily as part of a B complex and my folate levels actually went down. Maybe absorption issues. I dont seem to absorb vitamins very well. I've had iron, B12 and Vitamin deficiencies for much of my life.
Here' s a thing. I'm only 5 weeks or so into taking methylfolate in a B complex - 400mcgs. I just switched to a 1mg capsule as I needed to stop the B complex with Biotin before my blood test next week. After 2 days I could feel the difference, so will add in a few extra capsules when I go back to the complex and effectively top it up a bit.
People with dysautonomia often have low normal or deficiencies. Whats going on at tissue level though is a different story, and even worse. If you're not absorbing it well then just add some more and be sure you're taking the cofactors.
hi I got my results back and my ferritin is 23 ! Knew it may of been that just didn’t expect it too have dropped again .
My doctor isn’t great since the one that I had a good connection with left as I was wondering if they could do a gluten test ? Is that a blood test do you know .
Hope you understand.
Also I do have periods for at least five too six days so I know that will also be a reason why
Oh no, that low ferritin. That level might qualify you for treatment by your GP. Has he done a full iron panel or just that? Also what were the other results - folate, B12, D3?
If you can get the ferritin up then that will help your heart rate issues no end. Low folate can cause intolerance issues, even in range.
The gluten intolerance us hypo's suffer from tends not to show up on any blood test. It's just that, an intolerance. That said, I'm not totally up to date with what blood tests are on offer so best ask your GP. There is a blood test for Coeliac but being negative for that doesn't mean you aren't gluten intolerant. The gold standard would be an elimination diet and then resolution of some symptoms.
thank you ! My b12 is 910 folate is 14.9 haven’t got my vitamin d back yet but I do supplements every day .
I actually feel less off balance since starting the iron again but my body can’t handle lots makes me so poorly so am taking 5mls at night and 2.5 in the morning.
Will be having my bloods done again in December.
I’ve been through this before and managed too get them up too 85 so I know I can do it again .
Yeah I just struggle with the heart rate and a bit out of it sometimes but I do have on and off vestibular issues and get migraine.
It’s like I know when my ferritin is low as it’s a whole different feeling if that makes sense?
Thanks for the help yeah my other bloods are always good it’s just the ferritin!
Hopefully thats a relief for you. If you take the iron with something containing Vit C it helps to get it absorbed. Can be a drink of orange juice or a supplement. It's a slow old job getting iron up so good luck.
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