I have been having problems since March 2023 with heart flutters, tremor in hands and shakiness. A blood test found TSH at 7.35 and T4 at 22.5. I have been hypothyroid since 1994 and was stable on 175mcg levothyroxine until this point(March '23). Blood tests, both NHS and from Monitor My Health have shown similar results: high TSH (highest 37) and T4 in the high normal range or just above. My last results were TSH 11.40 and T4 21.2. T3 3.1. The highest T3 has been is 3.5. I have been taking 150mcg of levothyroxine since October last year to try and calm the atrial flutters instead of 175mcg. The cardiologist I saw previously regarding the arrhythmias diagnosed me with a thyroid heart and was the person who requested an endocrinologist appointment.I am a little unsure about what happened today: I am being sent for a blood test to measure a lot of things as unbeknownst to me my uric acid, triglycerides and blood sugar were all high. This is new. He told me to put the levothyroxine up to 175mcg and prescribed bisoprolol to protect the heart. He told me to forget T4 and T3 and that we should concentrate on bringing the TSH down. I had wondered whether I had a problem in converting T4 to T3. He pooh pooh'd this. I would like to hear what others say about this please. Has anyone else had high TSH and high T4?
Thanks
Jo
Written by
Jokokokl
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What is the reference range for the FT4? This is important as ranges differ between labs.
How do you take your Levo? Its an extremely fussy hormone and doesnt like to be taken with anything else other than water, on an empty stomach and then wait for 1 hour before eating, drinking or taking any other meds.
Many Endo's dont accept the need for T3. Suggest you buy your own private blood test to see where your levels are at. You need TSH, FT4 & FT3.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Have you tested vitamin levels and are you supplementing them to optimal?
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. 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? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
So, how does he propose to lower the TSH whilst ignoring the thyroid hormones themselves? I'd be interested to see that. He obviously has no idea what he's talking about because you are very obviously a poor converter.
Heart flutters can be a hypo symptom, so I would imagine yours are due to your low T3. T3 is the active hormone needed by every single cell in your body to function correctly. And the heart needs a hell of lot of it! A cardiologist should know that!
So, what your results are saying you need is some T3 added to a reduced dose of levo (T4). Your FT4 is too high, and that can cause heart problems, too, and is generally not a good thing. And my apologies to your cardiologist but that's what hypothyroidism is all about: T4 and T3. It is not about the TSH, which doesn't do anything much.
Oh my goodness you have a dangerous one there! You are correct that you are a terrible converter and your troubles and high TSH are due to your terribly low fT3
Please seek a second opinion as putting your T4 up and raising your fT4 even higher is much worse for your health than adding T3
yes, my tSh has risen in the last year or so despite having high / highish fT4 .
it seems my conversion has worsened for some reason , and as fT3 has lowered , the TSH has risen . (so i have lowered levo a tad and added some T3, it's too early to know how this is going to turn out for me , but my previous results showing TSH rising /fT3 falling are here: healthunlocked.com/thyroidu...
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This post has a list of papers on thyroid / heart at the end , which may come in useful for you at some point :
just 'chucking more T4 at the problem' is probably not the best idea, not when prescribing some T3 to balance things up is perfectly possible, because recent research is suggesting some concerns about higher fT4 levels , see this post healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk
and look for the bit starting
"There are SOME CONCERNS that having high /over rage T4 promotes some kinds of CANCER CELL PROLIFERATION ~ recent research ..... "
Thanks for posting the links to older posts/ articles on thyroid and heart health…I’m having the age-old problem of Gp insisting my high HR is from ‘overmedication with levo.’ ( rather than Long Covid causing postural hypotension yet high BP on sitting)…I certainly wouldn’t pass the pulse pressure test with result under 3200 with mine 5,000 plus. I get confused by this, and many articles, as really about early diagnosis of clear cut hypo or hyper thyroidism; where does the possibility of an ‘ over medicated’ hypo fit into their discussion? My TSH is 0.02 but free T3/4 50-40% range on 100 levo/15 T3, now down to 75levo/15 T3 ( lowest levo ever been on since diagnosis 22 years ago).
do you always get same brand levothyroxine at each prescription
Do you always test as recommended early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
Exactly what vitamin supplements are you taking
ESSENTIAL to test vitamin D twice year when supplementing
And test folate, ferritin and B12 at least annually minimum
Thanks for replying, and to all the others who have replied and given me useful info/links.
I am 70, female, have autoimmune hypothyroid. I do try to keep to the same brand of levo, but am having problems getting my surgery to request the same generic brand. I have had problems when changing. I do only drink water before my blood tests which I schedule for as early as poss. However, I do usually take levo in the morning before the test. I will not so so for the next test.
I was first diagnosed with Hashimoto's in 1996.
I take vitamin D3 and K2 supplements.
How do I get someone to look at my T3? GP never tests for anything other than TSH. I have been testing privately (using Monjtor My Health) both the endo (yesterday) and my GP previously have told me not to pay for tests.
Bit stuck really and I do feel that my age is against me in the way that I am treated by the medical profession!.
So Ft4 is falsely high if you took levothyroxine before test
Retest 6-8 weeks after increasing dose levothyroxine to 175mcg
Which brand of levothyroxine do you prefer
Have you tried gluten free and/or dairy free diet
If dairy free proves advantageous then look at eventually changing Levo to lactose free as well
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024
Retest thyroid levels at least 8 weeks after increasing dose levothyroxine
Meanwhile
A) got vitamins tested and optimal
B) trial GFree and dairy free
See how much Ft3 improves
If Ft3 remains below 5
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
Thanks for your reply. I have contacted a local endocrinologist who is willing to prescribe t3 after a further blood test. He was on the list that you emailed and he works for the NHS as well, and so I am hopeful.I cannot take Teva, it was changing to this brand that caused problems. I prefer Accord which was the brand favoured by my pharmacist for years (I didn't ask for it specifically, although I do now).
I am not lactose intolerant, but I do appear to be gluten sensitive.
I am so thankful for this site: I have learned so much from other forum users, as well as from the administrators.
I've never heard the phrase "thyroid heart" before. It sounds like the kind of thing someone would say who doesn't really understand the thyroid, and is trying to fob you off with a load of flannel.
I'm not saying that thyroid hormone levels don't affect the heart - they definitely do. And what the heart needs enough of is T3, not too much T4.
If it’s possible for thyroid/heart patients to be treated even more badly than other thyroid patients I would have to agree! Just dealing with that right now. Endos are a bunch of Cinderella’s (not seen or heard) and Cardiologists are ruthlessly able to suit themselves. If there was a pecking order between the two, cardiology are definitely top dogs and endos are ….. nowhere.
Jokokokl if you got a cardiologist that knew enough to even refer to “thyroid heart” at least he/she knew something about thyroid, which actually says heaps more about the level of ignorance of your endocrinologist. I have seen an endocrinologist who knows very much about this connection but so far he is refusing to treat me as cardiology (top dog) has the most clout. One wonders why the NHS bothers to ‘treat’ hypothyroidism at all! Ooops that’s what Professor Pearce’s job is, to make sure all that comes to an almighty halt!
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