PALPITATIONS OR AF ?: Does ANYONE know how you... - Thyroid UK

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PALPITATIONS OR AF ?

Jollypolly profile image
64 Replies

Does ANYONE know how you can tell the difference…?

I often get palps and or irregular heartbeat…whenever I can’t tolerate thyroid hormone or when adrenals are playing up etc etc.

Usually rights itself again when adrenals settle and back on any reasonable dose or t4 ..for example.

Just lately however I still seem to be irregular…..

When so you slightly panic and go to the doctor about it?

I don’t want to start a merrygo round with cardiologists etc .. and

Start on beta blockers and blood thinners etc etc etc

If all along it is to do with hormones, adrenals etc

Unfortunately I just cannot and do not trust the GPor the Endos to sensibly know if it is from the latter…and don’t want to open a scan of worms .

DOES ANYONE WITH AUTHORITY KNOW THE ANSWER TO THIS?

Very grateful indeed for definitive and knowledgable replies !!

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Jollypolly
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64 Replies
Jollypolly profile image
Jollypolly

Just to add…checking my text back i see I’ve discovered a new medical procedure in SCAN OF WORMS 🌝

greygoose profile image
greygoose

I don’t want to start a merrygo round with cardiologists etc .. and

Start on beta blockers and blood thinners etc etc etc

Oh, I do so understand what you mean! Doctors tend to think everything is to do with your heart, and nothing is to do with your thyroid. They just love diagnosing heart problems and do it with great gusto and enthusiasm - even when there's nothing wrong with your heart!

Unfortunately, I cannot help you, there, I don't know that much about hearts.

What do you mean by 'someone with authority'?

Jollypolly profile image
Jollypolly in reply togreygoose

No idea ! Just someone who knows they know!

greygoose profile image
greygoose in reply toJollypolly

OK lol Well, I know I don't know. Sorry. :)

Jollypolly profile image
Jollypolly in reply togreygoose

Thanks GG anyway…🌝

greygoose profile image
greygoose in reply toJollypolly

You're welcome. :)

Buddy195 profile image
Buddy195Administrator

Sorry, I’m no ‘authority’ on the subject, so can only offer my own experience.

I get palpitations, increased pulse rate and a tremor when my thyroid medication isn’t optimal and if I’m anxious, this also makes palpitations more frequent.

If you are worried, please see your GP for reassurance/ further testing if needed. I’ve previously had a 24hour monitor and ECG which put my mind at rest.

Jollypolly profile image
Jollypolly in reply toBuddy195

Yes, THANKYOU…It’s simply that I always want to out off going to GP or endos as they are so absolutely useless at all things thyroid ! But yes, it may be needs must when I’ve explored thoroughly.

shaws profile image
shawsAdministrator

When I took T4 only, I had constant palpitations especially during the night. I had many 'overnight by phone' recordings to the Cardiologist.

The cardiologist was puzzled and was going to put an implant in my heart 'to see what was going on'.

At that point T3 was added to T4, and symptoms relieved. I then stopped T4 and took T3 alone and had no heart issues thereafter. Everything calmed down. I no longer needed the Cardiologist.

Just the other day I came across a photocopy I had taken of pulse and it was 144. I take T3 alone now prescribed by NHS.

Jollypolly profile image
Jollypolly in reply toshaws

Thanks Shaws, Yes, I quite believe your experience.

I’ve had palps, irregular heartbeat , on and off for years.

Thing is it always normalises when I feel better thyroid wise.

That means…not too much thyroid hormones, not too little..just right

Okay..

Changing my name to Goldilocks 🌝

radd profile image
radd

DOES ANYONE WITH AUTHORITY KNOW THE ANSWER TO THIS?’ ….

🤣 .. 🤣 ... ... jollypolly, we are just a lowly patient to patient forum … and all in this shi* together!

Palps feel like heart beats have increased or are more intense in strength but always regular, whereas AF beats are any shape, size but defined by being all over the place. I used to get huge sharp bangs out of nowhere that frightened the life out of me.

As just an 'observing-of-others-patient-with-own-experiences' 😬, I tend to think palps is seen when someone has too much thyroid hormone in respect of low iron levels, and AF is when Levo levels are too high with too low FT3, ie classic conversion impairments, or when T3 levels go too high.

And I don't think my adrenals make my heart do funny things as they are too busy causing internal vibrations if I use up all energy, so creating a deficit between thyroid hormone & adrenals.

It sounds like you have AF. Mine went away once I could lower Levothyroxine dose and introduce a little T3. I love your SCAN OF WORMS 😊

HowNowWhatNow profile image
HowNowWhatNow in reply toradd

Can you please explain the relation between low iron and palps?

I was admitted to hospital last year as I had a terrible-looking ECG. I spent 3 days there and came out none the wiser about why I had been there. I raised low iron and thyroid with heart doctors who seemed not at all interested - they were looking for structural heart problems and that was that.

radd profile image
radd in reply toHowNowWhatNow

Geogeor,

There are many aspects to your question as iron deficiency is both a cause and effect of hypothyroidism.

Inadequate iron levels can not make enough haemoglobin to supply sufficient oxygen so the heart has to work harder in order to supply some extra, but the heart also requires adequate amounts of thyroid hormone, particularly T3 where T3 receptors are in abundance. But it is the getting of adequate supplies of both thyroid hormone and iron which can be challenging.

Iron is essential in the making of thyroid hormones & deficiencies decrease both T4 & T3 levels, & raise RT3. Further more even whole replacement with Levo/T3/NDT won’t always raise levels because the deoidinase (D3 enzyme) that drives RT3 also drives T3 to convert to inactive metabolites. Once in this vicious circle is becomes hard to get out.

I have even read articles that suggest iron deficient patients (who aren’t diagnosed hypothyroid) be given a low dose of Levo to help keep thyroid hormones stable enough to speed the metabolism and encourage the whole erythropoiesis production, ie RBC's, haemoglobin, etc to normalise. Of course we know that thyroid hormone can not be topped up and so to give (unnecessary) Levo risks skewing the HPT axis into producing less thyroid hormone through normal processes.

Furthermore there is evidence that the introduction of Levothyroxine encourages iron levels to reduce further because the need for iron increases due to stimulation erythropoiesis stimulation. Hence why members often see ferritin levels initially falling/falling to raise after starting iron supplementation.

And to complicate it further just like thyroid hormone physiology & receptors, transferrin receptors can reduce when not used long term. Then even when iron is replaced there might be insufficient protein carriers to bind and transport it as the signals for transferrin to increase have become blunted. And then identifying the cause of palps can be difficult .... iron deficiency, thyroid hormone deficiency, an actual heart condition?

Hepcidin controls iron in and out of the cells via ferroportin. It raises with high circulating iron levels, and does things like reduces further iron absorption for a while, impairs release of recycled iron and places more into storage (ferritin). But it also becomes raised with inflammation together with ferritin which is usually a good measure for iron status, except in the presence of inflammation.

Too much long term inflammation as seen in many Hashi sufferers starts to skew iron mechanisms effecting processes like absorption from the gut, recycling from damaged cells, and utilisation of ferritin, etc. Iron may become trapped in the cells, and once in that vicious circle it is hard to get out. This is when medics may start sending us for heart scans and doing ECG’s in response to our palpations instead of stabilising thyroid hormones and raising iron levels.

Hepcidin is stimulated to even higher levels with the same cytokines that are raised in Hashi (particularly interleukin-6 (IL-6). These are proteins stimulating/inhibiting the immune system and long term elevated do destructive damage to many body systems and why people such as Datis Kharraizian & Isabella Wentz advocate to lower thyroid antibody levels.

Let me know if you would like some links for further (but heavy-ish) reading.

Hylda2 profile image
Hylda2 in reply toradd

Daughter has odd ectopic beats, TSH in the 3s, untreated and ferritin in the 400s!! 😢

Jollypolly profile image
Jollypolly in reply toHowNowWhatNow

Precisely Geo…well said !! 😳😀

thyreoidea profile image
thyreoidea

Hi Jollypolly, I have had quite scary palpitations in the past and still get the odd ones. My variety were the ectopic type i.e a missing beat felt by the next one being a bump felt in the chest or a fluttering, and checking my pulse. These can be single or follow each other for a while with my heart going a bit faster as well before settling. I think I was on too much Levothyroxine but that is what I deduced from my own detective work. I would visit your GP to put your mind at rest and it is your choice to accept or reject any medication before a 24 hour monitor and an ECG etc. I hope this helps.

WildDeer profile image
WildDeer

I also get thumping heart beats when my T3 ( I'm on T3 only) is running low )

Jollypolly profile image
Jollypolly in reply toWildDeer

Thanks WD ..interesting…I used to think I was only getting palps ehen too high on Levo or t3..hadn’t thought of it as possibly because under medicated.

shaws profile image
shawsAdministrator in reply toWildDeer

Hearts and brains have the most T3 receptor cells.

Jollypolly

Hylda2 profile image
Hylda2

I used to have a lot of strong palpitations and chose to go the Dr, cardiologist, EP route. On referral to a cardiologist I was given a one day holter monitor to wear and this indeed found AF. I am now suitably medicated with heart drugs but have occasional break throughs even though my T4 and T3 are optimal.

Jollypolly profile image
Jollypolly in reply toHylda2

Ok thanks. It’s obvious( not in the slightest being rude to you hear by the way! ) that some people will develop AF whether Hypo or not. I realise and accept this. However..I don’t trust the NHS on all things thyroid…and don’t expect them to join anything up at all…

If you go with heart symptoms…heart is what they’ll look at…they won’t then send you to endo …or even suggest that could be your problem 🙄

Hylda2 profile image
Hylda2 in reply toJollypolly

I understand where you are coming from but at 78 I would rather be safe than sorry

JackieVest profile image
JackieVest in reply toHylda2

How would a holter monitor determine if palpitations are AF or caused by something else? Does it also register something about the palpitation that makes it possible to discern this?

Hylda2 profile image
Hylda2 in reply toJackieVest

I’m no good at looking at ecgs even on my Apple Watch but I imagine there must be a difference in the traces produced.

Mugsy15 profile image
Mugsy15

Short of buying yourself a Kardia monitor or one of the watches that include ECG, you cannot tell the difference unless you are an experienced AF sufferer. AF is easy to diagnose when an ECG is performed, as there is a tell-tale absence of a 'p wave'. This is the little upward blip seen just before each main beat on a normal trace.

You need to see your GP for this diagnosis and maybe to go on the waiting list to get given a portable monitor to wear for a day or two as it is often difficult to catch.

If it does turn out that you have paroxysmal (intermittent) AF there is no need for the despair you seem to view that with. The condition is not considered life-threatening on its own and there are several treatment options going forward.

In the meantime, please pay attention to your hydration levels. Even very slight dehydration is well known to worsen arrythmias for those prone to them. Drink the recommended amount of plain water every day.

If you do find you have AF, the Health Unlocked AF forum is an excellent source of advice.

Partner20 profile image
Partner20 in reply toMugsy15

I second your very sensible and practical advice. No-one can diagnose such conditions on a virtual forum!!!

Jollypolly profile image
Jollypolly in reply toPartner20

Sensible and practical advice it is indeed. But I wasn’t actually asking for any diagnosis if you read my post properly.

Jollypolly profile image
Jollypolly in reply toMugsy15

Thanks for replying. You misunderstand me…I accept sometimes people will get.AF…whether hypos or not

my husband has it…

And I wouldn’t be against getting that diagnosed and doing the necessary to get and be well

My beef is with the fact that nothing is joined up in the NHS

If I go to go with heart symptoms…Cardiology it is…and I don’t know whether the difference is easily discernible to Cardiologists between hormone induced sypmptoms or simply heart problems.

I’ve heart symptoms on and off for years ..but my heart seeems to normalise when I feel better …

A very fragile state for Hashi people hey! 😳🌝

I think Radd probably has an important point…Low iron is possibly a factor…

I’m trying to address that now..

But fitting in iron supps away from tea, coffee , wine and thyroid meds is a nightmare !! Only 24 hours in each day 😌

JackieVest profile image
JackieVest in reply toJollypolly

There are iron supps that you can take with everything, such as Heme iron.

Jollypolly profile image
Jollypolly in reply toJackieVest

Oh really ?? This would be. Brilliant I’ll have to look for this

Many thanks much appreciated 😀

Petalrugbaba profile image
Petalrugbaba

I had a period of worrying heart palpitations at the end of last year. My GP did an ECG and diagnosed ectopic heart beat. A very low dose of beta blockers sorted the problem and I now don’t need them except for the odd occasion. I was referred to a cardiologist just to be on the safe side and had a heart scan and wore a halter for 24 hours. All ok and so I feel reassured when I occasionally get palpitations which sometimes used to be quite frightening. It’s worth seeking medical advice. I try to avoid caffeine and limit alcohol and chocolate as can be triggers. I strongly advise you to see your GP. Don’t be frightened to do this as you can stay in control and the tests that I had are not unpleasant and so worthwhile 😊.

Jollypolly profile image
Jollypolly in reply toPetalrugbaba

Thanks Petal and all the rest ! Lovely Pantomime handle ! Interesting and intelligent reply to me ..THANKYOU !

Yes, I’m not at all against a spot of beta blockers if necessary…my husband developed AF and had only a couple of weeks on them and they normalised his heart, so now doesn’t take them

Usually my heart normalises when I get thyroid meds right…but this time..just not righting itself, so may have to bite the bullet.

Ballethorse profile image
Ballethorse

I have been much improved with palpitations by having t-3 added to my T-4 dose. Every few weeks I might have an episode that last a few minutes and I take Bach rescue remedy and drink a couple glasses of water. I attribute this to dropping estrogen levels .. I am 55. And big time adrenal stress. I take licorice tincture to raise my blood pressure and help adrenals. Also, it is good for my hormones. Black Cohosh tincture also has been the only thing that has helped my hormonal hot flashes and calmed my nervous system down so that I can sleep.

Jollypolly profile image
Jollypolly in reply toBallethorse

Thanks for replying…I’m interested in the Liqourice tincture with reference to adrenals…adrenal stress etc etc is my big problem also…I have Liqourice DGL tablets..also liquorice capsules…so..

Have you read somewhere that it helps low cortisol? I’ve not heard of it before…but open to new suggestions…

Ballethorse profile image
Ballethorse in reply toJollypolly

My naturopathic doctor recommended it for adrenals and raising blood pressure. Also, when I added 10 mcg T-3 to my T-4 I had to drop T-4 to from 125mcg to 100 mcg so as not to have hyper symptoms . Bloodwork showed that I was not converting enough T-4 to T-3. I live in the US and am fortunate to get tirosint as my T-4 med. it has zero fillers and each capsule is vacuum sealed. The best solution I have experienced with adrenal stuff is actually just getting quality nine hours of sleep. Actually, good sleep fixes so many other things too. I wish you luck . It is a journey . I was diagnosed in 2017 with the hypothyroidism and by the end of 2021 I finally feel I got my meds right . The site helped a lot with all the vitamins. I am actually on a much much lower dose of medication because I worked on all my vitamin levels and nutrition. My kids are also on thyroid meds and we all did food allergy testing, which should be a requirement in socialized medicine . Food allergies cause inflammation and all sorts of things. We look for affordable doctors in the US as we have no insurance and pay out of pocket.

HowNowWhatNow profile image
HowNowWhatNow in reply toBallethorse

I’m sorry to hear about your not having insurance. We in the U.K. are so lucky in many ways with the NHS, though we do have reason to find fault with it, too.

Re: licorice - avoid taking too much if you are pregnant or about to be. That is all.

Ballethorse profile image
Ballethorse in reply toHowNowWhatNow

Thank you and good advice about not taking licorice while pregnant .

Jollypolly profile image
Jollypolly in reply toBallethorse

So agree with you on sleep…And I tersring..I too have found that earring as well as I can and taking supps has so improved thyroid status. Thanks so much for the detail.🌝

radd profile image
radd in reply toJollypolly

Jollypolly,

Liquorice dosing is very precise. It raises cortisol by suppression of an enzyme that metabolises to cortisone, but too high a dose or too long term use can reduce aldosterone & renin, effecting electrolytes and then BP goes up.

As Geogeor has pointed out it can also induce preterm labour/miscarrigae, and if you have Hashi and some knowledge on the lymphocytes called T-helper cells (TH) the glycyrrhiza stimulates TH-1 & dampens TH-2. It didn’t suit me.

Jollypolly profile image
Jollypolly in reply toradd

Hi again Radd..You say that Liqourice dosing is very precise…

Please enlighten me..

What exactly do you mean by this…how do you know..

that’s not me being rude by the way !

What exactly do you know..

I have the following in stock…

Solgar DGL

It says on label

Standardised DGL root powdered extract =250 mg

Raw Liquorice root powder 225 mg.

1-3 daily

I soon stopped taking these ..as I then found these ones I had before..

DGL chewable

Label…

DGL liquroice extact 10:1 root….400 mg

Anise seed powder ….55 mg

Stevia leaf powder …2.5 mg

1-3 times a day 20 mins before meal.

Since January I had had a sore throat…angry looking…and with a roundish swelling to one side like a small button…

Three visits to doctor…one lot of antibiotics…mouthwashes, gargles..salt water gargles etc etc….no better…then I started to think…

had had reflux problem before…a few years ago…

only symptom then feeling full and not wanting to eat….

gastroscopy showed acid eating away at inside….

Omeprazole…eat what you like ..doctor said…

I knew nothing in those days….but started looking into it…dr Sarah Myhills excellent article …

Cured myself with these DGL chewable snd something else don’t remember

This time no symptoms but the very angry throat…but I’m almost certain it’s the same problem..docs insist it isn’t cancer..

So been taking these tablets plus Betaine x3 daily…

Doctors Best

Betaine 650 mg

Pepsin. 250,000 units

Gentian root 20 mg

I’m thoroughly stuffed up with this lot plus vinegar in water in morning…and yesterday felt rough and felt it was all too much. .

And started feeling full again and not wanting to eat.

You may or may not have any pearls of wisdom…but I always value your input…

Any help here gratefully recieved

My throat is definitely improved,..swelling is smaller..throat less angry

I HAVE thought of a week or two of omeprazole to help healing then drop it off…

M Y excellent pharmacist..very thyroid friendly…said that would not hurt at all…though he is against PPI s long term .

Hope this isn’t too much info…and don’t mean to take up too much of your time….

THANKYOU for reading…🌝

radd profile image
radd in reply toJollypolly

Jollypolly,

'that’s not me being rude by the way !' .... 🤣 .. 😁

I don’t mean not to use liquorice but to be aware that different dosing amounts are relevant for different symptoms coz although it’s commonly used/known about, there can be a tendency to think of it as only a flavouring when it’s actually extremely potent.

My above reply describes how BP can be increased but there is also research showing liquorice to reduce BP (& cholesterol) when used to treat related cardiac issues.

ncbi.nlm.nih.gov/pmc/articl...

.

Also having estrogenic activity so used in treatment for PCOS.

pubmed.ncbi.nlm.nih.gov/129...

.

Also raises DHEA and may have androgenic properties.

pubmed.ncbi.nlm.nih.gov/211...

.

This a great paper covering all but quite heavy

ncbi.nlm.nih.gov/pmc/articl...

.

I supplemented liquorice safely in a small dose as part of a combo but it didn’t appear to do anything for me. Maybe not enough or maybe I just didn’t realise the results as I never really felt well until adding T3 to my meds.

nutriadvanced.co.uk/siberia...

.

The active metabolite glycyrrhetic acid is what can strongly influence the immune system, positively or negatively if you have Hashi. Some people take coconut water with the glycyrrhetic to offset risk of potassium loss. The other type that you have is DGL (deglycyrrhizinated) and causes less side effects so more commonly used and good for people who already have high BP, glaucoma, etc.

I have read that DGL helps poorly tummys by increasing the mucus so protecting against too much acid, but if you think you have too much stomach acid you shouldn't be supplementing Betaine. However, in hypothyroidism it is much more common to have low stomach acid and the two conditions (high & low) can present the same so risking misinterpreted symptoms. I can give you the science but feel I've probably written enough so ask if you want it 😊.

You can not take Omeprazole and Betaine together as they do opposite jobs and you could make yourself very unwell. If you decide to switch over to Omeprazole I would suggest leaving a few days after taking last Betaine tablet.

Jollypolly profile image
Jollypolly in reply toradd

Thanks a million Radd Will reply properly tomorrow when not so tired .. many thanks 😊

Jollypolly profile image
Jollypolly in reply toradd

Ok …have spent some time perusing your post to me🌝Most of the inclusions are way above my extremely unscientific and anyway foggy head..

But I’ve tried my hardest to make some sense of some of it !!

I’m very grateful that you have dug this lot out for me…

The bit you have prefaced…

This is a great paper…

Yes, it’s really interesting…and really caught my attention.

I have to have this really simple for stated reasons.

As I said in my post to you

I have two pots of pills

The Solgar Deglycyrrhised Liquorice root extract caps, the dose of which I don’t understand at all !

And the DGL…by Natural Factors

On label it says

Deglycyrrizinated Liquorice Extract 10:1 …….400 mg

Anise seed powder 55 mg

Stevia powder 2.6 mg

It suggests 1-3 chewable tabs 20 mins before a meal.

This falls in pretty well with the just mentioned article you sent me.

Yes, I WAS about to use the omeprazole..but it looks like it would be worth giving this longer don’t you think ?

I don’t know about the betaine as well…should I just stick to the liquorice…perhaps I’ll ask the pharmacist ..poor man…I don’t know why they don’t just call them doctors! They are much more use.

I’m pleased to say the chewable DGL are a product of Canada not China..and for that reason I seem to have great faith in them 🙃🤣

Thanks Radd..you are a star.

Jollypolly profile image
Jollypolly in reply toradd

By the way Radd.I noticed you mentioned needing t3 in order to feel well

Well…

My lifelong problem (now 72 and still attempting resolution)

has been inability to raise thyroid hormones in absolutely every and any form…and believe me I’ve been through most of them…

Because of poor adrenals…had two saliva tests which show very similar..Low DHEA and low cortisol…

So the result is inability to tolerate anything like the right dose for more than two or three weeks ..

Then heart rate up

Palps

Feeeling exceedingly anxious…I’ll with it…

And so on and on

Just can’t seem to crack this one…

Despite one or two adrenal glandulars a day…

It’s a bummer 😏

(Still thankful for all that IS right 😊)

raglansleeve profile image
raglansleeve

I know exactly where you're coming from and could have asked your question myself. Just after being diagnosed with subclinical hypothyroidism, I started having occasional missed beats, strange "glubs" and occasional palpitations (rapid beats). These got worse over the next year, but because I'd done a lot of thyroid reading, and a spent a lot of time on thyroid forums, I realized that these issues were very likely related to my new "condition". And sure enough, with each dose increase, these events started becoming less and less frequent, until they're now almost non-existent. I do wonder though if either issue could be Afib (paroxysmal) and would love to have that question answered definitively without having to see a cardiologist or have a Holter monitor for a few days. I also fear a diagnosis that might involve serious meds, or worse, when all I really need is a higher dose of T4 and/or T3. Right now, I'm only experiencing an odd glub about once every week, so I'm not overly concerned, but I'd still like to know more.

Jollypolly profile image
Jollypolly in reply toraglansleeve

Wow, Raglansleeve..you have put it so succinctly! You’ve said PRECISELY what I was trying to say in my original post. So nice that someone else gets it …my point that is ! I’m not really worried if turns out to be AF…and it could be…even though palps over the years may not have been ..I realise that…

I just don’t want to open the Can of Worms and get diagnosed with something I ain’t got just because they can’t link Cardiology with Endocrinology.

I consider you a friend now ! 🌝😂

JackieVest profile image
JackieVest in reply toJollypolly

And I am afraid of getting wrongly diagnosed with Afib and be needlessly put on a med that I am then afraid to get off of because I fear something bad will happen. So I totally get not wanting to open an incorrect can of worms.

rachelleigh profile image
rachelleigh

PurpleNel Is this similar to your 'thing'? I wondered if any of the discussion here might be helpful... x

PurpleNel profile image
PurpleNel in reply torachelleigh

Bless you for thinking of me here, that is so thoughtful - having a severe brain fog day so can't take all this in. Is looking more and more like my issue is POTS. though but possibly tied in with Hashi's/hypo and meds not working and iron issues. A big mess!

Titaniumfox profile image
Titaniumfox

I had what I presume was AFib, but because I have histamine intolerance was quite used to my heart jumping and thumping irregularly at times. However since I began taking vitamin B2 (riboflavin) twice daily, I realise this has completely stopped! It's the only explanation I have.

JackieVest profile image
JackieVest in reply toTitaniumfox

I had a chiropractor tell me once I had histamine intolerance but kind of left it at that. How do you know you have this intolerance and what do you do about it? Also, what Riboflavin do you take and what is your dose? I will try anything as I have already tried about everything.

Titaniumfox profile image
Titaniumfox in reply toJackieVest

Histamine intolerance is basically diagnosed by eliminating and reintroducing various foods - took ages for me to figure out my trigger foods, and even those vary as histamine content varies. I try to eat food as fresh as possible to have minimal histamine, and avoid foods that are naturally high in histamine, such as smoked fish or vinegar, preserved foods. There are lists online that can help, but really everyone is a bit different in what makes them react. I usually start reacting 4 hrs after eating - my tinnitus gets louder, I feel a bit dizzy or light-headed, have a headache, heart rate increases and becomes erratic. It's not fun waking in the night with that, it can give nightmares.

At the moment I'm taking Riboflavin from Oxford Vitality. The tablets I take are 100 mcg (hard to find smaller doses unless in a vit B complex, which I don't want for other reasons), twice daily. I think it's hard to absorb more than 25 mcg at a time anyway as it pees out in one's urine (which will be bright neon yellow). I probably absorb around 50 mcg daily.

Histamine is normally inactivated by two enzymes, Histamine-N-Methyltransferase (HNMT) and Di-aminooxidase (DAO). Histamine intolerance comes from lack of production of SAM (vitamin B12 is needed to produce this), which is required by the enzyme histamine-N-methyl transferase, which inactivates dietary histamine. However to fix B12 deficiency you need to fix B2 deficiency (if that's what you have - I do, as confirmed by an OAT - organic acids test). So it's a long road but that's the one I'm on at present. At least it makes biochemical sense to me. :)

Jollypolly profile image
Jollypolly in reply toTitaniumfox

Interesting ! Please tell me dose of vitamin B2 .. and also , why did you start this ? Did you read of a connection ?

Titaniumfox profile image
Titaniumfox in reply toJollypolly

I chanced upon a Facebook group called Understanding B12 Deficiency, which is based on the protocol of Dr Greg Russell-Jones, biochemist and inventor of B12 transdermal oil. I have learnt a lot by joining that group and have had free consultations with Dr G after doing an OAT, HMTA (hair metal analysis) and various other tests inc thyroid. His protocol involves improving thyroid function and repleting vitamins and minerals involved in activating many enzymes, so that biochemical processes begin to work properly again. This is no miracle cure or anything like that, but simply focuses on getting nutrients to optimal levels so biochem pathways work properly again.

It's important to keep plugging away consistently rather than being haphazard with dosing, so taking 20 mcg B2 a couple of times daily is a better idea than taking a larger dose every few days, for example. I also take recommended doses of Iodine, Selenium and Molybdenum daily (this has corrected my low stomach acid caused by hypothyrodism) as well as using B12 transdermal oil. I know not everyone believes transdermal B12 works, but I would beg to differ. It's also vital to get ferritin levels optimal (at 90-100 at least) as well as Vit D to over 100. I was very fortunate to stumble across this group and it's been very helpful, as well as not involving anything extreme! However like everything, it takes time and everyone is different.

Jollypolly profile image
Jollypolly in reply toTitaniumfox

You’re a star for sending me all this…THANKYOU…food for thought hey🌝

Titaniumfox profile image
Titaniumfox in reply toJollypolly

You're very welcome. :)

Jollypolly profile image
Jollypolly

Golly gosh that’s interesting ! What dose of B2!daily?

Titaniumfox profile image
Titaniumfox in reply toJollypolly

It is interesting, isn't it! The tablets I take are 100 mcg (hard to find smaller doses unless in a vit b complex, which I don't want for other reasons). I think it's hard to absorb more than 25 mcg at a time anyway as it pees out in one's urine (which will be bright neon yellow). I probably absorb around 50 mcg daily.

Jollypolly profile image
Jollypolly in reply toTitaniumfox

Thanksbad for that 😀

JackieVest profile image
JackieVest

I'm going through the exact same thing. Palpitations that I feel are hormone or food-related. Been holding off on going to the cardiologist because I know he's going to want to put me on Eliquis or similar without any investigation. He's a pill pusher. Would really like to get to the bottom of this.

Jollypolly profile image
Jollypolly in reply toJackieVest

Exactly !! Exactly exactly … it’s a problem isn’t it .. it’s extremely difficult to be wise over this Isn’t it .

My husband recently got AF snd they put him in beta blockers . With the excellent pharmacists advice he only stayed on them briefly as pharmacist said only takethem as and when so we keep a check on things .. .. .. …..and he said heart can re regulate itself which it has done so he is not on them now

I don’t mind doing similar if necessary .. but at ont want to be on blood thinners if a tuly a hormonal issue ..

JackieVest profile image
JackieVest in reply toJollypolly

Wow I didn't know you could stop beta blockers. I guess that is what I'm afraid of, being told you HAVE to be on this or else something dire will happen when in fact it is some hormonal or other thing and not heart-related. Also another point is I have taken my pulse when my heart is skipping around and it is always around 60 beats a minute or less. Beta blockers are for slowing the heart rate, no? Does your heart race or does it just flip around like mine?

Jollypolly profile image
Jollypolly in reply toJackieVest

Hi JackieIgnore my moment ago questions as you’ve already answered and I have just seen

Yes , please don’t worry as it won’t harm you to have short go at beta blockers if it’s necessary

Our fabulous

Pharmacist at Boots categorically told husband and me you only take them if heart rate is over 80 as they do indeed slow end regulate your heart

You can stop snd start as necessary , obviously as you are keeping a check on things … I think it’s more silly to take them of your heart rate is considered normal 😃

FancyPants54 profile image
FancyPants54

I have permanent AF. You can't tell if it's AF or some other sort of palpitation unless you have an ECG when it's happening so that a medic can interpret the pattern of the readout. Many people life with AF without ever knowing it's there unless they have a routine test for something else and it shows up in the background or they have a stroke.

I used to get it proximally, and didn't take anything for it. When it happened it knocked me for six completely. But once it became permanent it got much better. For instance I can't feel a thing right now. And that's the case for most of the day. But if I do an ECG on my Apple Watch there it is, doing it's thing on the readout.

Personally I recommend that you try to see a doctor or a nurse for and ECG when it's happening. It's the only way to be sure. And if you do find out you have it you need a medic to look at your CHADS-VACS score to see if you need to take an anticoagulant. I resisted those at first until a perfectly fit and healthy friend of mine suffered an almost fatal stroke out of the blue. All I take for my AF is the anticoagulant and a small dose of beta blocker, which I need because my AF is fast. I am currently trying to dose my thyroid mainly on T3 and although my BP is OK it's pushing my HR up too high so if I stick with it I will have to increase my BB because it's tiring having your heart over 100bpm when working.

Don't ignore it. Don't fear a can of worms. If you have it you need to assess it and see what needs to be done about it because if you ignore it, changes are it will get worse.

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