Someone has asked if the tachycardia I have been getting lately may be caused by the 5mcg of Tiromel that I take in the morning. Also I was wondering if I should stop taking the levothyroxine altogether, & either just try to buy some low dose Tiromel or Liothyronine without the T4 in hopes of getting some TSH as it looks like I may have problems with diodineses.
I am torn between buying the DIO 2 test & tackling the £75 GP, (am in jersey C I) - who anyway only prescribes paracetamol, Amlodipine, cetirazine, 75mcg levothyroxine, & HRT patches (for bones),but doesn't seem interested in cause of pain, dementia, or high HR & BP.
I could probably manage without the HRT & Levo, & could get cetirizine & paracetamol from pharmacy or ebay, which I think would be a cheaper option than GP's, if I could just get the pain & BP/tachycardia caused sorted. GP did not do bloods 8 weeks ago when I last saw him, but told me that Endo would have to tackle my health, but I havn't heard from Endo, & don't see the point of speaking to GP on phone, as I could buy 2 MMH tests for what it costs to phone him.
So could it be the 5mcg T3 which I bought privately as a non DR has suggested? or could it be the T4 that the Endo on December 22nd suggested as cause of heart problems. The T3 that I added to levo in October did lower the cholesterol a lot, but it was still over range, so just to be clear, the Endo did point out that as I did not have thyroidectomy for the Graves, I am likely not a thyroid sufferer. I do however have non bioactive TSH, it is still 0.01. Also still symptoms of high reverse T3 on Levothyroxine. I was started on 112 levo in february 2022, then rose to 125 in May, then reduced to 100 levo in December by Endo, then reduced by GP to 75mcg 4 weeks later by GP. I had to stop taking the 75mcg Teva levo though as the excipients caused no end of problems, so have 1 pack of Teva, which I hope to take back to pharmacy as soon as I can push through the pain barrier to get there. I had to cut up some left over various other brands to eke out, so may have to give up drugs altogether.
But today I need to get food as I havn't been out for a month! Sorry about the long ramble, but brain fog worse than ever... so in answer to concerned non thyroid sufferer's question - Do any of you get tachycardia on T3? TIA.
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Jenny583
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Too much T3, or too much in 1 go could cause racing heart.
You really need your FT4 & FT3 tested & you don’t seem to be getting help from GP or specialist with that.
The other issue is you are stopping & starting what medication you - have access to and x what can tolerate & until you can consistently sustain a unchanged dose and regularly test and adjust appropriately you are going to keep having struggles.
I buy pain relief & antihistamines from supermarket as Doctor won’t routinely prescribe. Jersey is different as doesn’t offer free prescriptions for those on levo or option to reduce costs such as prepaid prescriptions, so I know you are in a difficult position.
Once on Levo or Lio your TSH is going to remain low & as doctors focus on TSH this is also going to cause a further issue with continuing a supply from doctor.
Knowing if you have a genetic diodineses issue isn’t going to further your treatment unless doctors on board. I would prioritise function levels & adjust replacement as you need.
Optimising nutrients good idea too so if budget stretches to testing key nutrients I would start there. Most people end up sourcing own supplements as doctors are not interested in this aspect of health.
Hi Purple, the advice by someone to not rush to buy more T3 is because of the tachycardia, but over the years Ive not had any problems with tachycardia or T3, (I self medicated till last year) but as I have non active graves, I have to be careful in case it comes back as I don't know if it was destroyed or not.
The health issues started when I started Levo, also the BP & HR go up as day goes on, but I have to explore all possibilities as Dr's are probably going to blame T3 for all my new health issues. Either way I will for sure have to reduce T4 again to 50mcg in split dose, as 75mcg is Teva only.
I may put call through to receptionist soon to inform her of my intentions, at the risk of expensive call from GP😬
Forgot to add, GP does not prescribe T3, I got them from ebay years ago, for emergency crash & burn. T3 alone never reduced TSH, but anything containing T4 made it vanish. If, as I suspect the extreme brain fog & apathy is caused by lack of conversion from the low TSH, on T4, then it would make sense to see if I can get some TSH back while I still can. It's all trial & error, as I don't have hashies. I got nutrients in range over last 5 years, but cannot now obtain or afford supplements, so will have to get fit enough to dig up the dandilions in back jungle. This is what Jersey say about T3 "too pricy".
And this is more or less what jimh111 has to say...
... If a patient needs T3 it is probably because they have impaired conversion and the most likely cause is insufficient TSH secretion due to a down-regulated axis or chronic illness. TSH stimulates deiodinase which regulates intracellular T3, as well as supplying circulating T3. If someone has this problem restoring serum T3 will not be enough to compensate for the loss of T3 that comes from local T4 to T3 conversion. They will need higher serum fT3 than normal.
Possibly the most common and most potent cause of impaired T4 to T3 conversion is a subnormal TSH, the pituitary producing less TSH which has reduced bioactivity. TSH regulates conversion, so if it is lower than expected (for fT3, fT4) there will be reduced conversion. In this case taking levothyroxine will lower TSH and hence reduce conversion further, a vicious circle....
But I still need to know what cause is,including DIO2 so I can remain a control freak, frighten Dr's, & if necessary buy some time & appropriate pills. I agree that prioritising function is 1st on list. x
jimh111 it was only 12.5 mcg so not enough to affect TSH, which was anyway not bioactive. The tiny dose did raise my temperature from low 35's to 36 which was main reason friend gave them to me, as I was passing out from the cold in winter.
I mean that when I took T3 ALONE it was 10mcg of UK liothyronine that were given me by a friend after she had her liothyronine script restored after advice from this forum, after which she was able to sort her kitchen cupboards. She then found a bottle of Liothyronine which she gave to me. Around 180 of them. The problems started when I ran out, & had to take metavive. TSH went to 0.01 after that.
When I got 1st TFT (in 2017 )since eighties when I was coming off carbimazole - I had taken biotin the night before test, & only discovered the beware of biotin warnings the day after test. Even so, FT3 was only 7% but B12 appeared as over range, whereas at previous blood test B12 was barely in range. That suggested biotin assay interference. 18 months later while on starter dose of metavive + 5mcg liothyronine, & in spite of having to take another starter dose of metavive 4-5 hours before blood draw in order to get out of bed & attend surgery test result was FT3 = 0%.
I was never told I was "hyper" only words used by dr's were "thyrotoxicosis" "thyroid storm" & "flutter" I have no way of knowing if antibodies were done, local GP notes that I obtained last year contained a note from the GP who continued to prescribe high dose carbimazole & propranolol after my return to Jersey mentioned the English hospital diagnosed graves disease, but no mention of tests or treatment. GP's don't test trab or tsi here. Low thyroid test results were not passed on from previous practice either, most stuff just disappeared. I need to get well enough to apply for local hospital records, (phlebotomy) but even then only poison on offer is low dose levo, I'd rather have nothing. Levo makes me ill.
Endo claims that my TSH rose to 2.6? in 2020, I was not informed of that until she told me in December, but according to my notes I had skipped biotin for 6 days before that blood draw, & I was on just 12.5mcg Tiromel at time. I told her about the biotin fast, she did not mention that the FT4 was very under range though, but you are right that TSH is knocked down by exogenous Thryoid. Just looked at recovered notes & TSH rose from 0.13 range 0.50 - 5.0 in january 2020 to 2.06 5 days later. Endo's always blame me for low TSH & ignore hypometabolism, & very low FT3 or FT4.
PS, at end of 1980 receptionist at GP surgery when I lived in UK told me something in blood was highest ever seen, I now know she was talking about either T3/t4 or antibodies, but did labs test antibodies in 1980?
I did go through a phase of worse tachycardia on starting T3 but it turned out my FT3 was at only 30% of its range at the time so no wonder really. As soon as the dose went up the tachycardia vanished.
GP's and Endo's tend to think of 'textbook' cases where heart rate is slow and people sleep more when hypo. This in reality is not the case and the opposite can be true.
What were your latest blood results?
When hypo we get low stomach acid that means we cannot absorb vitamins well from our food. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3?
Same here Jaydee, I got palpitations if T3 dose too low. T3 allowed me to sleep well too. But now I fight and lose to stay awake during day, & always very tired. I fought to get ferritin done last year, but as I was practically living on liver pate at time it was 1st time ever not scraping bottom or under. Present GP practice don't check nutrient levels, so I go by what shade of yellow my skin is😀.
Last blood tests were.... Blood test on 125mcg levo & 5 mcg T3 were on 6/7th December TSH 0.02 (0.50 - 5.00) . FT4 22.4 (10.0 - 25.0) FT3 7.2 ( 4.3 - 8.1 )
I felt extremely hypo, was also in extreme pain, but bloods looked good!
If you have remaining symptoms then its all the more important to get vitamins OPTIMAL.
What supplements are you taking?
I know theres a cost of living crisis so push GP to test ferritin, folate, B12 & D3. Approach the kindest most helpful GP you know at your practice. Failing that then try one of the private companies. Thyroid UK offer discount codes. thyroiduk.org/help-and-supp...
Have you tried or are you gluten and possibly also dairy free?
Free T4 (fT4) 22.4 pmol/L (10 - 25) 82.7%
Free T3 (fT3) 7.2 pmol/L (4.3 - 8.1) 76.3%
Your FT4 is relatively high so you might think about a very small Levo decrease of 12.5mcgs.
I take methyl B12/folate/B6, + D3, magnesium, B1,B2,B3, chromium, vit C, & when no forthcoming tests likely, 10MG biotin, for neuropathy/inflamation. I did well on gluten dairy free years ago, after bad dysbiosis, but can't even afford basic glutinous bread now, plus I ended up with secondary hyperparathyroidism! was told off by an Endo, for doing what GP told me to do.🙄
Thanks for the conversion rates! Those tests were on 125 levothyroxine last year. I had to drop to 75mcg because of bad reaction to Levo. No tests since december last year, but GP told me he would arrange for endo tests in 8 weeks, that was 8 weeks ago, maybe he forgot? I have almost no income so cannot afford to play the GP £££games. Would rather call ambulance when I run out of Amlodipine & paracetamol, which does not lower BP anyway. Off to shops now, armed with days worth of paracetamol.
I don't even eat bread these days. Only rarely and I have to buy a GF sandwich when out and about. Its perfectly possible to live without bread and if you're struggling and know you have previously benefitted from GF + DF then perhaps time to revisit that?
You're due new blood tests so see what they say but do push for the vitamin ones. D3 varies a lot with the seasons and we have just been going through winter.
If Amlodipine not working well then get dose increased by GP.
I lived without bread for years, too scared to touch gluten, but it makes no difference. We cannot get frozen veg here either. Bought out of date cauliflower today, £3.75, down from £5.00, but too ill to cook or eat food. Bought waitrose own brand stale out of date loaf for under £1. I am living on paracetamol & baking powder to hold it down, as chronic heartburn. Chest pain has joined in the fun now.
I will see if I can contact Endo nurse or secretary to ask for certain blood tests, but Endo's only check endo organs, GP's at the practice I'm now with don't check the D3, iron sats, folate, B12 as they are not aware that I was under range when at previous practice who advised me to self medicate without leaving a record of what levels were...
I will phone surgery AM, & ask for an update, but have no idea how to get to surgery or hospital phlebotomy, I need a courier armed with morphine!
One day I had a heart rate of 150 - 160 beats per minute. I also developed severe chest pain. I ended up being checked out for heart attack at my local hospital. They did lots of tests, and before I was discharged I managed to get a copy of the results of the blood tests they had done. (Miracles sometimes happen.)
I discovered that although my sodium level was approximately mid-range my potassium was rock-bottom (matched bottom of the range). I have no idea what caused it, and I wonder if it was the cause of that particular episode of tachycardia and chest pain.
I also have problems with tachycardia when my iron is low or I'm anaemic. It is a known symptom of anaemia. This link
Ah yes! I have had all those problems in past. Back then I was able to buy whatever I needed through Amazon, but they don't send to Jersey now. But I think the pain & problems with left lung maybe have a bearing on the high BP & HR. I'm not coughing up as much froth now, so mainly dry coughing.
Also having been bedridden for a year, living off the cheesy wotzits in the wardrobe can't help matters, I think a lot of it could be deconditioning, it will be interesting to see if the breathlessness is still there when I come back from supermarkets, that started in November.
I have had anaemia many times, I used to crave liver pate & meat whenever it was bad, that's what I go by now. I keep telling Dr's that my blood sugar is too high, & that I always fast before tests but they don't believe me, because they lie to each other too. 2 of my Aunts died of diabetes. I am pretty certain I have insulin resistance,I told the Endo I have all signs of metabolic syndrome, she poo pooed that idea, but even if I had the £, I could not get tested as there are no private testing facilities here.
When I had spent over £1000 on GP's over a few weeks around xmas of 2010/11 not one GP tested my blood, even though I could not lie down, sleep or eat. Pulsatile tinnitus ignored, very over range BP at night, extreme tachycardia at night, seizures, so that I had to stand up all night, & remind myself to breath in & out, & sleep 2 hours in daytime. In Drs notes "essential hypertension" & health anxiety. It was definitely electrolytes then. I stopped PPI's tricyclics, (max dose)! propranolol, anti seizure meds, calcium channel blockers, among other things, & BP & HR went down to extreme low. I ate ginger which allowed me to eat bananas & kiwi's, which was all I could hold down for ages, anyway no £ left for any other food.
Ironically GP's in 2011 never measured BP again till recently, & yet sent several appts for hospital for holter monitors ECG's & heaven knows what else in 2011 & 2012, after the crisis was over, after I fixed the problem that GP's caused in 1st place. I will get some bananas & see if that helps. We have awful food shortages here, so almost everything is frozen, & what is not frozen goes rotten on return from shops. They freeze fruit & veg before shipping to Jersey. Will get back to you all when I know more. Thanks. x
But I think the pain & problems with left lung maybe have a bearing on the high BP & HR. I'm not coughing up as much froth now, so mainly dry coughing.
I have a history of 30+ years of smoking. I stopped in 2009. As you can imagine my lungs are in poor condition permanently. I got Covid in 2021 and with the severe cough I got and everything else that went with Covid, my lungs took another battering.
About two or three months after I recovered from the worst effects of Covid my lungs were still in dreadful condition and they weren't improving. So I bought a good quality nebuliser in total desperation. I bought this one :
Buying the above in bulk can reduce the price a lot, although it is worth checking out several sellers.
The nebuliser + saline has been an amazing success, helping me to clear out gunge I would never otherwise be able to get rid of. It increases my O2 saturation as well. I bought a pulse oximeter at the start of the pandemic in 2020, and they are really useful too. I bought this one but there are many more to choose from now than there were when I bought mine:
I am so sorry you had such bad lungs, pleased though that these gadgets helped. I wanted to buy something like that but I live in Jersey & this is all I get when I try to get hold of anything useful from amazon ...Temporarily out of stock. GP was happy with my 125bpm on his pulse oximeter in January also the sats were 98%.
Have just tried to take BP sitting down and standing, but the home monitor cannot read if over top of range, second time it managed to read as 166/91, HR 114. Maybe I got covid too?
If you do mean one of those then tachycardia is a known adverse effect of them listed in the Patient Information Leaflet. I was tried on Amitriptyline some years ago which drove my heart rate up to 150 bpm, and Nortriptyline pushed it up to 135 bpm. I would never agree to go on them again. They were prescribed for me to reduce pain and for that they were actually successful - but I couldn't stand the tachycardia, so had to stop.
I was on Dothiepin/dosulupin for around 25 years, for insomnia, which was caused by propranolol. The propranolol was for migraine then for High BP. The migraine, high BP, burnout & high cholesterol was caused by low metabolism, which got much worse when I gave up smoking in 1990.
The diagnosis of the probable cause of the above ailments were changed to a diagnosis of depression, being a secret meat eater, being a secret druggie etc, though I was not made aware of that till I saw the remarks in the GP notes last year.
Also around 20 years ago the testing protocols changed, & T4 was swapped with TSH only testing, & total cholesterol in stead of itemised levels became the norm, at same time as I was told to take high dose propranolol every day along with increase to maximum dose of dosolupin, artificial saliva, eye drops, antihistamines etc, & told that I would die if I didn't take them. I never had depression, just bad side effects from prescription drugs, & dreadful insomnia, but the Jersey powers that be were found to have no mental health service &possibly the highest suicide rate in the world, so politicians insisted that as many people as possible take AD's, so they can brag about their excellent health care here, keep patients away from short staffed hospital, & of course GP's are rewarded financially & profit from the US style health care we have.
If we do end up in a coma in hospital, the patient has to pay a GP to come round to sell the drugs needed at full price, then they are starved, neglected, & thrown out before they are stabilised. If they are still in a coma they are booted off to a NHS hospital where everything is free, but only if they have the £ for the airfares.
You were wise to stop the tryptalynes humanbean, they are deadly. My tachycardia & high BP on tryptalines was ignored & noted as health anxiety...
I moved to England when I was 16. I was very ill at 23, GP told me I could be cured back in Jersey. I returned to a hick town that had no cardiologist, endocrinologist, with no medical records, & just a carrier bag of max dose carbimazole & propranolol. I was too ill to hold a job down, & career that I built was based in UK & very specialised.
I am 65, & have not been able to work for 40 odd years. I don't qualify for a pension in UK, or here come to that. I need to get fit to get to a solicitor & write my will, but 1st I need to get out of bed & gather paperwork, so at least my hovel won't go to the nearest relatives - who are satanists. But Ist I need to find a charity to act as beneficiary to my hovel. The solicitors will of course take every penny in executor fees to administer the hovel which will be carved up between them & their developers , so any charities that I may nominate would not benefit as there would be no £ left, that's what a friend who practically ran a large law firm told me.
I still have nightmares about living in England as a 16 yer old. emigration is not an option.
That's a medical diagnosis now? Are people supposed to be ashamed of it?"
Ha ha! yes! 20 years ago, I was accused of eating meat, as my cholesterol & BP had reached dizzy heights. Only a few weeks before _the same Dr had told me that my thyroid had packed up, & that it had packed up many years before, & expressed surprise that it had only just dropped completely out of sight, & that I would have to start on thyroxine, as the cholesterol & high BP were a result of no thyroid.
So when I had the second test she announced that the cholesterol had risen even more, but that this was caused by eating red meat. I told her that all I could afford to eat was stale bread cheese toasties, she would not believe me. That stuck in my mind. Hence "secret meat eater" Needless to say the propranolol made my T4 magically reappear in serum, & diagnosis was changed to secret meat eating dementia lunatic...
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