Palpitations driving me mad : Anyone out there... - Thyroid UK

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Palpitations driving me mad

annie123 profile image
29 Replies

Anyone out there got palpitations and strange feeling of throat vibrating . Despite taking beta blockers 80mgs

Have Graves' disease on levothyroxine 100mcgs bloods all NAD

Weight gain ++++ lethargy , fatigue, shortness of breath ,body aches all over , hot flushes . Taking supplements galore .

Any thoughts ???

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annie123
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29 Replies
Sheffield6 profile image
Sheffield6

I had palpitations at first with levothyroxine. Think your body eventually adjusts.

Inaquandary profile image
Inaquandary

I have all these symptoms too.. On propranolol 40mgs twice a day. Its been horrendous for 6 weeks since TT but slowly improving. On 175mcgs levothyroxine.

Clutter profile image
Clutter

Annie123,

You only had TSH tested so you don't know that T4 and T3 are good. On 100mcg Levothyroxine I had TSH <0.01 and mid-range FT4 but FT3 was below range and that was certainly contributing to the debilitating palpitations I experienced. You can order TSH, FT4 and FT3 via thyroiduk.org.uk/tuk/testin... or order the Medichecks UltraVit or Blue Horizon Thyroid Plus 11 which includes vitamins and minerals. Medichecks offer #ThyroidThursday discounts.

Nanaedake profile image
Nanaedake

I don't quite understand why you are on levothyroxine with Graves disease and also on Betablockers. You haven't explained enough. Are you on block and replace or have you had RAI or surgery to reduce thyroid?

What tests have you had for Graves disease and what blood test results showed you had Graves disease? Which antibodies have been tested? What supplements have you had tested and have you had blood tests for these?

Fruitandnutcase profile image
Fruitandnutcase in reply toNanaedake

Same here. I can’t understand why Annie is taking 100mcg levo if she is hyper unless she is being treated with block and replace and is also taking carbimazole.

Like you say Nanaedake we need more information. As Clutter says Blue Horizons Thyroid 11 will give Annie a lot of useful information. Or if she already knows results for everything she says is ok then it would be worth posting them as sometimes ok isn’t really ok.

Valarian profile image
Valarian in reply toNanaedake

In an earlier post, Annie123 mentions that she has had RAI

dgleds profile image
dgleds

i just started getting palpitations in june this year, but ive used levothyroxine for about 20 years...My blood pressure is up a bit, so i ditched drip coffee for decaf...blood pressure seem to go down...They have tested my blood, and ive done all the heart tests and im ok other wise???? I think my blood pressure fluctuates easy now, maybe you should have your blood pressure checked incase..

Rmichelle profile image
Rmichelle

I thought graves was carbi or ptu?😕

Clutter profile image
Clutter in reply toRmichelle

Rmichelle,

Carbimazole and PTU are for the hyperthyroidism Graves causes. Patients often have remission from hyperthyroidism but Graves doesn't go away. Some Graves patients become hypothyroid after a few years remission.

Annie123 has had RAI to ablate her thyroid and that made her hypothyroid.

Rmichelle profile image
Rmichelle in reply toClutter

I understand😊thankyou.

Debsoxford profile image
Debsoxford

Ok like others I'm confused on your meds but not as knowledgeable on them as others (so keeping quite about those) I also have graves and had palpitations before carbmizole kicked in, I was told (by an alternative practitioner) to:

Lie flat on your back cross your legs at your ankles then your arms at your wrists and interlinked your fingers I used to also do some slow deep breathing I really found it helped to send me off to sleep and not end up listening and worrying about the palpitations

Good luck

Airmed profile image
Airmed

I used to get them daily/alternate on T4. As you say vibrating, I called it clicking in back of throat before they started. Last one needed ambulance as I couldn’t stop it, was with GP friend who insisted. That was nearly a year ago now. When I changed to T3 approx 5 yrs ago they became less frequent almost immediately. I had been prescribed verapamil which I could either take all the time or just when I had an attack. Decided to take on attack if they were handy and mostly were not. GP told me to splash face with cold water or blow into a clenched fist like you do a trumpet for example and this is supposed to stimulate the vagus nerve and then they should stop. Am sure there are people here with much better info about vagus nerve stuff though. Interestingly I came across article yesterday about a device that has been developed for massaging the vagus nerve primarily for stress management. I wrote to the Dr and asked if it could be used for stopping palpations. He wasnt sure as they haven’t been used for this purpose am going to ask GP who specialises in heart problems if any good before purchasing as they are going to be about £150. Expensive for a security blanket. If I was still getting them nearly every day I would have bought one yesterday.

aineyy profile image
aineyy

You mention you take supplements, does that include magnesium? Shown to help significantly with palpitations.

Mazer profile image
Mazer

Sounds to me like acid reflux but the silent type LPR, you don't feel burning with it but sometimes can in upper chest area. I was on Propranolol as well which didn't stop it and made my heart thud harder. Lansoprazole is what you probably need, 15mg or 30mg 30 minutes before food and you have to have food for them to work. Instructions say 30m to an hour before food but they don't work if eating an hour after. They take a few days to work properly and if you want to come off them you have to reduce them slowly by tipping some out of the capsules.

Magnesium glycinate also helped me as well as an inch of kefir milk mixed with some almond milk every morning. (got the kefir from asda)

I had all your symptoms and still do sometimes but much less severe.

I also found I had a food intolerance to cornflour / maize and yeast.

I'm seeing a private nutritionist now to try and repair the balance of good and bad bacteria in my stomach.

Heloise profile image
Heloise in reply toMazer

Mazur, I wondered if nutritionists might be better at addressing the autoimmune problem. Bacteria is needed for some digestion so an important aspect. The Betrayal Series made this point and the objective is to change your microbiome. It sounds as if your nutritionist may realize this. I read your last post about your trigger being corn. Has your doctor prescribed breath tests as in SIBO? I think all these gut issues are tied together whether IBS or any other immune problem. It sounds like you are on the right track with enzymes. Have you tried proteolytic enzymes as well? I hope you keep posting and best wishes!

Mazer profile image
Mazer in reply toHeloise

The doctor's and specialists I've seen on the nhs in the UK don't believe in Sibo but I had a stool test to test for hpylori and ibd which was negative. I'm about to do a 3 day stool test ordered by my nutritionist which tests the amount of good and bad bacteria as well as parasites.

She says my whole body has become acidic so has given me a diet sheet and supplements to kill bad bacteria and alkalise the body. Got to wait till I've done the test before I can start using them though.

A lot of people have success with digestive enzymes but I've never tried them. The theory there is the older you get your pancreas produces less enzymes to break down the food.

Other people have had success with apple cider vinegar and supplements containing HCL with pepsin that actually give you more acid. The reason that works for some is acid reflux can be caused by your stomach not producing enough acid to break down the food which causes it to ferment in the stomach producing gas pushing the acid up. I've not been brave enough to try that though. I have tried the apple cider vinegar but that seemed to make me worse, I think you have to wait until your esophagus is less inflamed before trying it.

I'll let you know how I get on with everything anyway.

Heloise profile image
Heloise in reply toMazer

Yes, the older you get.....the less of everything and enzymes especially important for almost all body functions and especially healing....wounds, bone breaks, strains; just about everything. I do notice an improvement with proteolytic enzymes and think everyone should try them. These are notes I took about them:

They catalyze and regulate all the metabolic reactions in the body

. After age 40 you lose enzymes 1% thereafter.

Digestive enzymes will recycle as metabolic enzymes

They fight inflammation and aid in cell repair and energy

.

They unlock regular biochemical

action.

Interesting comment was made during this talk that when they examined people who died of pancreatic cancer there were NO enzymes found. So I do think one should take a look at the many enzymes available.

I'm sure the vinegar did burn because of the nature of your membranes but I think after a few tries that will go away. Your stomach is inflamed and cannot produce acid in that state. Slippery Elm may help.

Parasites are notoriously difficult to spot. The herbs mentioned in the Sibo summit were berberine, golden seal and Schisandra, also olive leaf and oregano oil.

I would love to hear how a nutritionist manages the autoimmune issue and I do have hopes for you.

Mintychristine profile image
Mintychristine

Im fascinated by this I am suffering horrendous burns I cant sleep for palpitations the clicking in my throat all these symptoms I take 200 thyroxin I also have RA just started methotrexate not doing well Terrible stomach problems Anaemic going to Drs today but its been there since Jan also suffering blocked bile ducts The burns are literally sending meu insane my face hurts my clothes hurt its like a ten minute boil I mention them at every appointment but never get any advice All they ever say is my medication is necessary. Any help or advice would be great. I dont need any private blood work they take my bloods every 2 wks Im not aware of specific levels but they contact me about anaemia etc.

Mazer profile image
Mazer in reply toMintychristine

For quick relief from the burning put a quarter of a teaspoon of baking soda (bicarbonate of soda) in a glass of warm water and sip it. I don't recommend doing it often though.

Would definitely look into getting some digestive enzymes. (although I've not tried them myself)

Try changing one of your meals with jasmine rice (easiest rice to digest) roasted chicken breast (check packet to make sure it's just chicken in it, numerous times I've seen maltodexrin added and cornflour) add boiled veg (peas, shredded carrot, red bell pepper, spinach) , add olive oil, grated ginger, some tumeric, honey, chopped basil and oregano, salt and a tiny amount of black pepper (or leave the pepper but it does help your body absorb the tumeric)

SlowDragon profile image
SlowDragonAdministrator

If you had RAI due to Graves then look at going strictly gluten free

Propranolol tends to lower magnesium

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Nanaedake profile image
Nanaedake in reply toSlowDragon

Interesting, I didn't know propranolol lowered magnesium.

SlowDragon profile image
SlowDragonAdministrator in reply toNanaedake

Read that in The Magnesium Miracle

I was stuck on propranolol for over 20 years. Cutting gluten was key for me, plus adding magnesium and vitamin D

Nanaedake profile image
Nanaedake in reply toSlowDragon

I had a 'stuck on propranolol experience too'. Had horrible side effects from them but didn't realise the cause as not in patient information leaflet.

Mazer profile image
Mazer in reply toNanaedake

I didn't know it lowered it either but explains why I felt constant nausea whilst on it and had a big improvement when I took magnesium supplements.

annie123 profile image
annie123

Thank you all for taking the time to answer my heart palpatitations . Should have made it clearer and mentioned I had RAI for Graves' disease which has left me hypothyroid so I take 100mcgs levothyroxine . Have never felt myself since my RAI regret having had RAI . After Christmas going to see an endocrinologist in Cardiff one on the list let's hope he can shed some light on these very complicated symptoms .

Nanaedake profile image
Nanaedake in reply toannie123

Let us know how you get on.

SlowDragon profile image
SlowDragonAdministrator

Not sure why you're taking propranolol. It slows T4 conversion or uptake. But it's very difficult to get off. Has to be reduced incredibly slowly. Eg just 5mg reduction per day. Wait at least 10-14 days before considering further reduction.

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Essential to get full results BEFORE seeing an endo or the visit is waste of time

you need to see if just increase in dose, gluten free and correct vitamins resolves symptoms

Flouride free toothpaste is good idea. Check your water supply does not have flouride added (most don't)

Avoid all soya including soya lecithin if possible

Eventually

You might consider DIO2 gene test.

thyroiduk.org.uk/tuk/testin...

Titian profile image
Titian

I had all sorts of horrible problems on Levo and several other types of this drug. Some of the symptoms that you are describing are side effects of thyroid drugs. I switched to Armour thyroid, a very low dose (15mg), and it has helped. I was on 20mg of Levo and I ended up in the ER with chest pains, body aches, fever, GI problems, and more. It has taken me 8 years to adjust to the drug and to be able to tolerate the current medication without serious side effects.

Your dosage may be too high and your body may be sensitive to the drug. It can cause palpitations. Talk to your doctor and see if you can stop the drug just to see if it is causing your problems. If the palps and other issues go away, then you know it was a side effect from the drug. You can then reintroduce the drug at a much smaller dose and increase it gradually until your body adjusts.

Mintychristine profile image
Mintychristine

Im butting my own ailments despite it was annie's post...sorry annie but its the bain of my life My gp once said unfortunately despite needing thyroxine sometimes the side effects affect us. Ages ago just before my RA diagnosis one gp said I was being over-medicatef with too much thyroxine she took me back to baseline of 100 She nearly killed me I was ill When RA was positive medication made my levels erratic. Referred to endocrinologist sorry but he was no help told me to take Vit D. But now Im so bogged down not knowing what supplements l need or help. The stomach thing is spot on because minutes after eating anything I burn. When I take my tablets I burn I've changed my diet and trying all the anti-inflammatory foods and it does help a bit I will try the baking soda tip but is that the enzymes you mean

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