I’ve been ill since the beginning of January with atrial fibrillation. Eventually, I got to speak to a doctor and had blood test taken on the 4th of January.
I was taking 75 mcg and 100 levoxathyrine alternate days and had been stable for 11 months.
Results:
TSH 18.5. miu/l 0.38 - 5.33
T4. 8.8. “. 7.9. -14.4
I was told by one doctor to increase my medication to 150 MCG and another doctor, 100 MCG. As it was nearly impossible to talk to a doctor, I did the 150 for one week and then reduced to 100.
Yesterday I ended up in A&E with atrial fibrillation test results showed no heart problems. It was my thyroid out of work again?
4:2/23
TSH. 0.08miu/l. 0.38 - 5.33
T4. 20.09. 7.9. - 14.4
A & E doctor said to reduce dose to 75. Do I do this immediately or as my body is overmedicated do I leave it a little while?
Can you advise please?
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Stefcon1
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How long after you changed the dose was this blood result taken? It takes 6-8 weeks on one dose for blood levels to stabilise to get an accurate test result.
The body needs consistency with dosing. Take Levo at the same time of day, every day. You've had a lot of changes in dose in a short space of time and no wonder your body is rebelling.
Approx how much do you weigh? Can work out roughly how much you should be taking.
Have you recently had bloods done for ferritin, folate, B12 and D3?
I can’t understand how the levels have swung from hypo to hyper so quickly if it takes 6 weeks for adjustment or has there been a typing error on the first reading as my doctor said I shouldn’t be in a fib with hypo. I’m very confused and feeling awful.
Totally not surprising you feel awful. Even the dose changes in quick succession would do that to me.
So your very estimated final dose is weight in kilos x1.6. 86x1.6 = 137 So 75mcgs is a fair way off your estimated dose by weight.
Do you have Hashi's? Could be a bit of a hyper swing? Do you always take dose the same on an empty stomach, 1hr away from food and coffee? Many people find taking it last thing at night helps for absorption.
It might be best to go back to your original dose being sure you take it consistently and as I described above, restest in 6-8 weeks at 9am or as close as possible.
I have taken it at night for years but was advised to take it first thing in morning on empty stomach. Everything is so confusing with thyroid. So are you saying to stay on 100mcg. and take at night. ?
I very much doubt you have Hashimoto's which is another auto immune disease which only attacks the thyroid.
If you did have Hashimoto's the RAI thyroid ablation would have put pay to its effect on your thyroid health, just as the RAI put pay to your Graves - for the thyroid element of this AI disease at least.
...the TSH is a 'delayed response' ... it is still showing the overmedicated effect of 150mcg , so ignore TSH until you have been on the same dose for 6 weeks .( TSH can sometimes change fast ~ within a day or so ... BUT it can also take at least 6 weeks to settle down to where it is going to be for a settled dose .. so this is why we can only use TSH as a 'true' measure when we have waited 6 weeks )
The fT4 level is a more true reflection of your current dose after 2 weeks of 100mcg ..... and it will probably go down a little bit more over the next weeks if you stayed on 100mcg ... But it is still very over range after 2 weeks on 100mcg , so that does look like 100mcg may be a bit too much .
It takes fT4 test about 2/3 weeks to be a 'more or less' correct reflection of the dose you are taking , (because T4 has a 'half life' of 7 days~ so a little bit of the last few doses of 150mcg dose is still in there after 2 weeks on 100mcg )
how many hours did you take the last dose of levo before this test ? ( answer ~ 24hrs )
it was very bad advice to go up to 150mcg .. that is too big an increase , at most they should have told you to increase to 100/ 125mcg alternate , (or more carefully to 100mcg/ day ) ,
Going down to 75 is not a great idea .. your high TSH and low fT4 on 75/100mcg clearly showed that dose was not enough.... so lowering that original dose to 75mcg would be worse.
Symptoms are also on a bit of a delay .. it took a couple of weeks after the 150mcg before you felt overmedicated ,, and it will take a while after being down on a lower dose for things to improve again.... it takes a while for things to settle down again when you've had too much.
Changes in Levo dose need to be as small as possible, and as gradual as possible , the body dose not like sudden lurches up or down in dose .. and it will object to what has happened recently .. give it time to settle down on 100mcg and the get retested to see where you are.
(This reply was later edited as i missed the high fT4 result when i first replied.. sorry for the confusion)
oh sorry .. i wasn't paying enough attention to what you wrote ... i just realised the fT4 IS over range so please ignore my previous advice to stay on 100mcg ... while we ask some more questions
how many weeks did you take 100mcg for before this last test ?
how many hours before this last test did you take the last dose of 100mcg ?
You really can't go about chopping and changing doses so soon after each other. It all has to be done gradually with no more than 25ug changes each time (up or down). And then leave for a week or so to get the outcome. Your body isn't like a car where you can press the accelerator or brake and get an instant response. Body changes are set against the tendency to resist such changes so you have to give it time on any alteration to adapt properly.
So looking back at your first post 6 years ago :-:
You had RAI thyroid ablation and had TED following this treatment ( I did too ) and presume you have Graves Disease.
Graves is an auto immune disease - and the most well rounded research I found is that of Elaine Moore who has Graves and went through RAI treatment in around 2000 and finding no help with her continued ill health started researching this poorly understood and badly treated AI disease herself. elaine-moore.com
I also had mid teen levels of TSH after the RAI treatment in 2005 in around 2012 and believe this when my thyroid was finally totally burnt out and disabled by this toxic substance.
It is essential that you are dosed and monitored on your Free T3 and Free T4 results and ranges and not a TSH / T4 reading.
The TSH in itself does not cause symptoms - it's just a signal and with Graves and after RAI a totally unreliable message of anything and why we must have a Free T3 and Free T4 reading.
Levothyroxine is a pro-hormone - a storage hormone - and needs to be converted by the body into T3 the active hormone that runs the body.
We generally feel at our best when out T4 is in the top quadrant of the range as this should in theory convert to a good level of T3 as it is where your T3 sits that causes all the symptoms you are likely experiencing.
Your own ability to convert the T4 into T3 can be compromised by low levels of ferritin, folate, B12 and vitamin D, inflammation, antibodies, any physiological stress ( emotional or physical ) depression, dieting and ageing.
In the first instance we need to see a full thyroid blood panel to include a TSH, T3 and T4 - if you can arrange the vitamins and minerals as well it would be very useful.
It your doctor is unable to run these for you there are companies listed on the Thyroid UK who can - thyroiduk.org - and if you can suggest you order the full thyroid panel to include the vitamins and minerals so we have some base references to work from.
Arrange an early as possible morning appointment - fast overnight just taking in water and do not take your T4 for that day until after the blood draw.
Stop any supplements for around a week previous so we can see exactly what your body is holding on to.
the test was done in the morning and tablets 24 hours earlier. I was supplementing for years but vit b12 vit d but when I had my last episode of afib I was told by cardiologist to come off them as my bit d was very high affecting my calcium.
I shall do a full blood panel and see what comes back and get advice from this group.
I take Wockhardt for 75 and 100 although pharmacy is trying to change it. I am very allergic to gluten, stabilisers, preservatives so I am constantly asking the pharmacy to keep me on same brand.
TSH / fT4 / fT3 test results will not be meaningful until you have been on the same dose for 6 weeks .
How many weeks were you taking 100mcg before this test ?
just noticed the fT4 is well over range at the moment, so staying on 100mcg may be too much ~ pleas ignore my previous advice about staying on 100mcg .
in that case , (since fT4 is way over range 24 hours after last dose ,and you have had 2 weeks for most of the T4 from the 150mcg dose to get out of your system ) ... i would suggest that staying on 100mcg would be a bit too much at the moment , and going back to your original dose of 75/100 alternate is the best course of action for now .
Let that dose settle for 6 weeks THEN get TSH/ fT4/ and fT3 tested .
( i still think going down to 75 mcg is a bad idea)
All tests are accredited so should not be dismissed by GPs!!
Full labs are the only way to discover your thyroid status.....but they must be examined in conjunction with any symptoms you have.
Do not accept the advice that results are "normal" just because they lie within the ref range....this is rubbish
Instead we seek to find the exact point within the range where we feel symptom free/ well
I suggest that right now your body is in a state of utter confusion, stay on a steady dose for at least 6 weeks then do a full thyroid test....suggest 75mcg levo
But be patient and wait until the dose you have decided to take has had time to stabilise in the serum ( at least 6 weeks) otherwise you will be wasting your money because the results will be somewhat skewed and therefore of no help.
Meantime don't worry about the Afib... in many ways its the symptom not the cause....finding your therapeutic dose should resolve that
Let the dose settle first
Be patient...a job half done isn't a job worth doing!!
AFib can be caused by too much thyroid hormone. AND by too little. Not that the average cardiologist seems to understand this. Don't worry about the Afib. It won't kill you. Concentrate of getting your thyroid right.
Afib can feel like the worst diagnosis in the world when it happens. Then as you get brave enough to look around, you find that something like 30% of the population has it and a huge number of them don't even know it. We are just the ones who can feel it to notice. And that's good in a way because we can take an anticoagulant to protect us against the biggest issue with Aib, blood clot. Once you remove that risk the whole thing is much more manageable.
It can also run in families. My dad, his brother, his sister and one of his nieces all have it. And that's just the ones I know about. It's an electrical pulse issue not a heart structure problem so we can live with it easily once the initial problems are ironed out.
hi. Really sympathise with your issues and the Afib. It’s absolutely true that many live with the condition. It is also true that it feels worse sometimes than the actual danger you are in. But it is good to have it properly managed and assessment done for anticoagulants if you might need them. The other thing to consider is the heart rate. If you are in AFib but not tachycardic(heart rate over 100) the hospital usually let you go home if you have been admitted and are on appropriate medication. If your heart is not going too fast then it’s usually fine. But if you experience tachycardia it’s always wise to get checked out. The aFib heart likes to go faster in some people. Like me. Which is why I take a beta blocker to try and prevent it.
My afib is definitely connected to my levothyroxine dose and it needs only very minor adjustments to start misbehaving. I don’t let them change my dose by more than 25mcg in.a week. It’s a very fine balance. My GP and also my cardiologist are brilliant and let me have lots of input into my treatment at any point where a change is needed .
Mine is caused by too much levothyroxine.
But it can be caused by the reverse situation too.
As others with more expert understanding advise, make changes slowly and retest.
If you experience Afib with a very fast or uncomfortable heart rate get checked out.
Thank you so much. Hearing someone else having similar problems is reassuring. I had so much trouble trying to even speak to a doctor, that you feel you just can’t be bothered and you are a nuisance. I’m very disappointed in my GP surgery. They used to be brilliant before Covid. However, once I was seen it was off to A &E to waste their time. Thank you again for your input.
The way I knew I had Graves was my heart rate, at over 120 bpm constantly. The actual diagnosis ended with radioactive ablation. I also have congenital tachycardia which increases my heart rate suddenly to 120 to 140. If I lie down and hold my breath my heart rate drops just as suddenly as it started racing. My resting heart rate is 58 to 63.
The endos have told me I am hyperthyroid and if I don’t decrease my levothyroxine (100 mcg) I will end up with a stroke or heart attack. All my blood tests are solidly in the normal range. I am also taking T3, 7.5 mcg in the morning and 5 mcg at bedtime.
My question to you would be who told you that you have afib? Do you have a rapid heartbeat that comes on when you are stressed, surprised, or have had too much caffeine? Do any of your siblings or other relatives have tachycardia? Before anyone messes with your prescriptions or tries to diagnose you with heart problems, check your family.
My mother was on thyroid replacement all her life and she had tachycardia. On one occasion she was at a leading local hospital attending a refresher nursing class when she had an attack. They immediately gave her an ekg and said there was nothing wrong with her heart. Thyroid problems are very often inherited. Who do you think passed yours down to you? A drastic change in our lives can bring bring them out. With my mother it was the death of her father when she was five years old. My daughter’s life was upended when the suddenly closed her school when she was 11…Graves disease followed. I had an extremely upsetting incident at work..I was in my 50s.
Do some family history work and see if you can find someone you can talk to. Good luck. It’s been an ongoing process for me. Hopefully you will reach stasis in your quest!
There is likely a genetic predisposition to Graves and you can read further on this, and so much more on the Elaine Moore Graves Disease Foundation websites _ elaine-moore.
I have Graves and went through RAI back in 2005 and simply followed the medical advice though sadly there seems little medical advice on the potential side effects of this toxic substance.
I only started my own research when very unwell some 8 years post this treatment option.
Lots of great advice here. But no mention of iron deficiency per se. Although, as both Jaydee and Pennyannie have indicated, it is crucial you get your ferritin checked. Incipient iron deficiency will show there first, and the slide into anaemia is otherwise symptomless.
"Symptoms of anaemia mimic those of hypothyroidism so causing the patient to believe they are not taking enough thyroid medication or that the thyroid medication they are taking is not working."
And:
"For example, hair loss is a sign of hypothyroidism but it is also caused by low iron levels. Patients can easily believe that they have this as a remaining sign of hypothyroidism without realising they may have low levels of iron/ferritin. It is very important that all hypothyroid patients also get tested for iron/ferritin."
"Thirdly, low iron levels may result in the thyroid peroxidase enzyme , which is iron-dependent, becoming less active so reducing the production of thyroid hormones. The thyroid metabolism may also be altered, the conversion of T4 (thyroxine ) into T3 (triiodothyronine ) slowed down, and the binding of T3 modified. The circulating levels of TSH (thyroid-stimulating hormone) may also be increased."
It is a holistic system with a lot of feedback loops. And doctors can be rather perfunctory in taking this all in. To the point where, especially in an acute setting, it becomes something of a game of Whac-A-Mole.
No considered advice to up your Levo dose should have been given without full cognizance of your iron/ferritin status. It is all too easy for us to fall foul of e.g. mundane stomach/SIBO issues which have significant knock-on effects. However, GPs very seldom engage with these issues until they cross their threshold of significance for some other reason. And by that time, as you have discovered, we may be coping with novel, effectively diversionary, consequences, as well as a lot of heavy duty and possibly redundant medical 'solutions'.
I assume that A&E saw clear evidence of AF on ECG, rather than just palpitations. And every medic knows to treat AF as a medical emergency. But (speaking as a routine lone AF sufferer myself), your AF is idiopathic (Ancient Greek for 'Search me!'), i.e. seemingly not the result of any structural cardiac, valvular or haemodynamic anomaly.
So, despite the obvious annoyance and anxiety, as others have also said, you need to regard AF as a symptomatic 'alarm-call'. Look through it, and check out other indicators. In parallel with trying to get back to a Levo dosing regime that worked for you before something else changed in the firmament.
It is all too easy for things like iron and B12 deficiency to sneak up on us. And these things are exquisitely related via apparently banal nutritional things, e.g. hypochlorhydria (low stomach acid) and other malabsorption issues, as well as outright PA and related lifestyle issues that can produce too much reverse T3 and excess homocysteine.
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