Are the risks of stroke or atrial fibrillation ... - Thyroid UK

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Are the risks of stroke or atrial fibrillation real?

jsy_girl profile image
64 Replies

Hi all. I posted here recently as was feeling quite good on a dose of 125mcg levo and 30mcg lio and I asked advice about telling my doctor that I had gone up to this higher dose (prescribed 25mcg lio). Everyone said I should tell him and so I did. He would really like me to go down but he said he would tell me the risks and if I felt well and was willing to accept the risks he would still be happy to prescribe.

Tbh I thought this was a good outcome and very reasonable of him. However I would just like to understand whether the risks he’s told me about are really something I should be worried about?

atrial fibrillation later and there is a significant risk of 6% or so of getting a stroke but she is prepared to accept this.

This is the letter he’s written to my GP (quote of risks pasted above)

I have seen [me] today on a Zoom call. She has got Hashimoto's thyroiditis as you know. Currently she is on thyroxine 0.125 of a milligram and T3 10µg three times a day. This is more than she needs as judged by her thyroid function tests. However she does feel well on this dose and would prefer all being equal to continue with it.

I have had an extensive discussion with her and she is prepared to accept the risks. There are clear risks that she could go into atrial fibrillation later and there is a significant risk of 6% or so of getting a stroke but she is prepared to accept this.

In the circumstances she is are happy to carry on with these doses of 10µg three times a day of T3 and T4 0.125 of a milligram.

The blood tests he references are:

TSH 0.01 (0.27-4.20)

Free T3 5.4 (3.9-6.8) 41.4%

Free T4 16 (11-26) 33%

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jsy_girl
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64 Replies
fuchsia-pink profile image
fuchsia-pink

My understanding is that there is a HUGE CHASM of difference between having a low TSH and an over-range free T3. The former is really important to doctors and totally unimportant in real life: it's the latter (too-high free T3) which you want to avoid as it is THIS that can cause problems.

Just because the two often go together (eg in untreated hypERthryoidism) doesn't mean that they always do (eg in patients on lio who are poor converters whoe TSH will inevitably be suppressed). My endo, who I wouldn't say is the greatest, at least understands this. Personally, I'm not remotely fussed abut my well below-range TSH (and nice high but not over-range thyroid hormones) x

jsy_girl profile image
jsy_girl in reply tofuchsia-pink

Thanks fuchsia pink. I said to my friend that I suspected what he was saying was bull sh*t but I thought you guys might know better

Sallyplum profile image
Sallyplum in reply tofuchsia-pink

Hear hear

tattybogle profile image
tattybogle

The 'stroke risk' only comes into it because having AF then infers a degree of risk for stroke. I think it's something to do with the improper beating of one of the chambers of the heart means there is an increase likelyhood of a blood clot forming because the blood isn't being moved properly and might hang around too long in that chamber... and if there is a blood clot ,and it goes to your brain .. then you have a stroke. This is the case for ANYONE with AF, and isn't anything specifically to do with your thyroid hormone level.

'Too high' a level of thyroid hormone may indeed lead to an increase risk of developing AF.. but if your fT4 and fT3 are in range and you have no signs of overmedication,,, then just having a low TSH by itself ... i don't believe that gives you an increased risk of AF.

I think the studies that show low TSH associated with AF are nearly all "low TSH in conjunction with high ft4 and /or high fT3"

jsy_girl profile image
jsy_girl in reply totattybogle

Thanks tattybogle that makes sense to understand how that would work. In which case seems fine and as the doctor said “I sense you’ll opt for a better quality of life, which is what I’d expect my own daughter or sister to opt for too”

tattybogle profile image
tattybogle in reply tojsy_girl

I like the sound of your Doctor .. sounds like an intelligent compassionate humanbieng ....

tattybogle profile image
tattybogle in reply totattybogle

I've got "she understands the risks" written on my GP record now too. Except my conversation with the GP didn't go quite so well , he said the "dose is 100mcg .. you'll die"

Hence me eventually being scared enough to look up about AF and strokes. and even reduce my Levo dose further for a few months to try it out ....( made me very unwell ) But i got over being scared , dose was put back up (reluctantly) be same GP .

... and i'm not dead .

jsy_girl profile image
jsy_girl in reply totattybogle

Very good to know!!! It’s so unhelpful that the medical knowledge on this is rather lacking in understanding!

Charlie-Farley profile image
Charlie-Farley in reply totattybogle

He’s a fool. When my mum was finally released from her suffering (after years of doctors at the surgery bringing her back from the brink of death (egregious intervention), he bumped into me in the street. He said “sorry for your loss we did everything we could”. To which I told him flatly “I’m glad you didn’t succeed. Her suffering had already been extended tenfold by constantly pumping her full of antibiotics”.

Should have seen the look on his face! Still carry anger for that. It doesn’t cloud my days anymore, but I hope to feed into the much needed conversation……… My mum finally slipped this mortal coil last year. They extended her suffering at that surgery not prepared to make her comfortable- obsessed with keeping the dying dying.

Jenny583 profile image
Jenny583 in reply totattybogle

But, have you had an autopsy to confirm that?🧐😏😉

tattybogle profile image
tattybogle in reply toJenny583

LOL.. No .. do you think i should get a private one , can they do fingerprick autopsies ?

Jenny583 profile image
Jenny583 in reply totattybogle

I believe the local morgue may be able to help you there?

tattybogle profile image
tattybogle in reply toJenny583

Ok , thanks ,, i'll get one booked.. I'd hate to be one of the Walking Dead without realising it .. people might point and laugh.

Angel_of_the_North profile image
Angel_of_the_North in reply totattybogle

Nah, as in Shaun of the Dead, you just end up on trolley duty at Tesco...

Jenny583 profile image
Jenny583 in reply totattybogle

You should be used to that by now, thanks to the Dr's!

Hylda2 profile image
Hylda2

My cardiologist wasn’t in the least bothered my TSH was 0.02 and I already have AF

shaws profile image
shawsAdministrator

I take T3 only. I followed the advice of Dr John Lowe, who was also an Adviser to Thyroiduk as well as having his own website. He was an expert in the use of T3 and would never prescribe T4 (levothyroxine) he also prescribed NDTs (now withdrawn in the UK) NDT = natural dessicated thyroid hormones made from animals' thyroid glands. First given in 1892 and saved lives from then on. but now withdrawn by those who I would have expected to be 'knowledgeable' but aren't,

healthunlocked.com/thyroidu...

inthedoldrums profile image
inthedoldrums in reply toshaws

If it helps, my take on the NICE guidlines is that NDT can be prescribed on a "named patient" basis in UK. However, I think, I am about to find out as I have requested it and am due to speak to my GP on Monday PM in this respect. I am unable to tolerate Levothyroxine and slipped into a bad state of ME/CFS six years ago as a result of persevering with it. It has taken me this long to be reasonably functional again. I tried Levo again about 4 months ago as requested by my GP but started on the slippery slope with it again, so had to stop. Hence my fresh attempts to be prescribed NDT.

shaws profile image
shawsAdministrator in reply tointhedoldrums

Considering that it was the only product that saved lives from 1892 onwards. I have no idea why it was withdrawn but obviously now restored

It is obvious to me that the majority of Endos just are not aware of how disabling symptoms can be if patient is not on the correct dose or on thyroid hormones that ease all the symptoms.

I'm glad you've been prescribed and hope you get the dose you require to relieve symptoms.

I think NDT can suit many as it is not synthetic but animals' thyroid glands.

inthedoldrums profile image
inthedoldrums in reply toshaws

Thanks for that and I hope that you do well too.

jimh111 profile image
jimh111

A supressed TSH is definitely linked to atrial fibrillation and consequent risk of stroke. Note I write 'supressed', sometimes TSH is low because the pituitary is underperforming. In your case it is supressed because you are on a high hormone dose, the equivalent of 215 mcg levothyroxine.

The coloured graph in this study jacc.org/doi/10.1016/S0735-... clearly shows how the incidence of atrial fibrillation is linked to thyroid hormone levels as reflected by TSH. (if you click on 'Download Figure' and then 'Open with (Photos)' you will get a nice large picture).

Your doctor is right to warn you of the AF risk from high hormone levels.

However, doctors are only aware of one side of the coin - the side with less risk! I don't blame the GPs, they are (mis)informed by the endocrinologists. If you look at Fig 1 from this study bmj.com/content/366/bmj.l4892 you will see that the risk of stroke increases rapidly as TSH falls below 0.1. You will also see that mortality (the risk of death) rises when TSH is above 4.0 and shoots up with TSH > 10.0. Doctors never warn patients about this. Again, this is the fault of endocrinologists misinforming GPs.

My conclusion is that you are best off with a TSH within the reference interval, or at least above 0.4 PROVIDED TSH is responding normally to fT3, fT4 levels.

Some of us need higher hormone levels, there's nothing we can do about this if we want a normal(ish) life. In that case we can be aware of the dangers, try to be on the lowest effective dose and do what we can to mitigate such risks. e.g. by taking regular exercise within our limits. This sort of compromise happens all the time in medicine.

Your blood test results look dodgy! I would expect your fT3 to be much higher on 30 mcg liothyronine. Did you leave a long time between your last dose of liothyronine and taking the blood? This would give a false low result.

tattybogle profile image
tattybogle in reply tojimh111

I agree.

I wish that it was the 'norm' to have grown up conversations with Doctors about the risk /benefit of thyroid hormone , whereas at the moment, it seems to be the exception.

It is the norm in other areas of medication /intervention that i have experienced on the NHS. ......they make a recommendation , they tell you the benefits and risks of having it , and explain what risks you might face if you don't agree to the medication/ intervention, and the final decision is up to you, as long as you are competent to decide.

I accept that i have a potentially higher chance of getting AF than would be the case if i ran my body at a slower pace on a lower dose .. but i balance that against the definite risk of cardiovascular unfitness if i don't take enough thyroid hormone to allow me to stay reasonably active, and so i accept the risk and try to maintain my overall fitness as best as i can.

I'm aware that there are a pretty high number of people on here who do have AF, and initially this did concern me , i do suspect it is a higher proportion that you'd see on a non-thyroid forum.

I'm not daft or reckless, and iv'e tried a lower dose, and continue to try and stay on the lowest dose necessary .

But I do object to being treated like a child where thyroid hormone is concerned.

I'm just as scared of having a stroke a the next person, i've seen my aunty have one age 79, and it left her totally paralysed on one side and the last 3 yrs of her life were not nice.

I don't know if she had recently developed AF or not , but she had been on Levo for most of her adult life at a dose of around 200/225mcg .. i know she didn't go for blood tests very often , and so it is likely that she was on a dose that wouldn't be 'allowed' by many doctors today, but she'd been started on Levo in 1950 (after Graves and partial thyroidectomy) , when higher doses were the norm. So i can see why she wouldn't have been willing to accept a lower dose later on , if it left her unable to function properly

But the thing is .... she was 79, she'd had a very active life, and was still able to run a a smallholding single handed, including wrangling sheep , and was doing just that when she had her stroke.

I never got the chance to ask her because i didn't know enough about thyroid hormone at the time.. but i'm pretty sure if i could have asked her " would you have preferred to minimise the risk of stroke age 79, by having a lower dose 30 years previous , if it meant you felt so naff you had to give up the sheep aged 49"... she would have said, no she wouldn't, and would have accepted what happened later as "that's just the way it is"

We are all going to die of 'something' ,and we should be given accurate unbiased information and allowed to make our own choices on risk /benefit.

Charlie-Farley profile image
Charlie-Farley in reply totattybogle

You know where I’m coming from when I say I’m on your page tatty! 😊👍

Dancing_dragonfly profile image
Dancing_dragonfly in reply totattybogle

Maybe different in the UK, but I thought levothyroxine wasn’t in use until the 60’s? Starting with the “Synthyroid is all anyone will EVER need now!”…. Line of BS. 🙄.

I think docs get the low TSH associated with Graves’ disease (which can be dangerous and cause AF due to much elevated T4), with a suppressed TSH.

This occurs simply because a person who is optimally medicated has no need for a higher output of thyroid stimulating hormone! I do not believe it is medically dangerous in this situation. Free T3& 4 still should be in range, but acceptable for FreeT3 to be upper end of range if vitals good and patient feeling well.

tattybogle profile image
tattybogle in reply toDancing_dragonfly

Yes., she had NDT for first few yrs , then Levo, i didn't including that bit of the tale , it was long enough already :)

Kalicocat profile image
Kalicocat in reply totattybogle

Did you try a lower dose of T3? I take 5.5 mcg Liothyronine along with 75 mcg levothyroxine. I feel perfect and my TSH is perfect. No one needs that much thyroid hormone. It is not wise to suppress TSH.

tattybogle profile image
tattybogle in reply toKalicocat

Kalicocat ? i've never taken T3.

" No one needs that much thyroid hormone"

Confused .....Is this referring to me or someone else , I take 112.5mcg Levo. Lots of people need 112.5mcg Levo , and lots of GP's prescribe it .

lots of people need more than 112.5mcg Levo ... i used to need 150mcg when i was younger and more active than i am now.

"My TSH is perfect ".. "it is not wise to supress TSH "

My TSH is not 'supressed' .....it was 'low but not supressed' for many years ( 0.04 to 0.1 ), but a large population study of patients on Levo showed 0.04 to 0.4 did not hold any greater risk than 'TSH in range' .

It's gone weird recently... my fT4 went up AND my TSH went up... TSH at last test was 1.947 so apparently 'perfect'... but at the same test my fT4 was way over range at 142%. 26.6[7.9-14] ...... TSH can sometimes be 'wrong'

The previous test TSH was 'in range' at 0.511.. so again 'perfect' .. but at the same test fT4 was even more over range at 181% 19 [7.9-14] ...... TSH can sometimes be very 'wrong'

When i first started Levo my TSH went down From 6.8 to 2.9 after 7 weeks on 50mcg Levo , then it was 2.5 after 5 months on 100mcg Levo , and then it was 2.7 after 3 months on 150 mcg Levo . ....... If my TSH were to be believed , it didn't think it mattered whether i took 50 or 150mcg .. which is obviously nonsense... the increased dose was evident in both my improved T4 test and also my improved symptoms .. but my TSH was useless as a way of monitoring my dose at that point.

Not everyone's TSH behaves itself predictably . Not everyone can find a dose of thyroid hormone that makes them feel perfect and keeps their TSH perfect. Some of us are forced to compromise , because our TSH isn't as co-operative as yours.

An open mind is needed......the examples above prove why this is so .

TSH can sometimes be a very useful guide , but sometimes it can also be wrong .

If your TSH is in the 'useful' camp .. good for you , but please don't make such blanket statements as 'no one needs that much thyroid hormone" , and " it's not good to supress TSH" without giving some serious thought as to why my TSH might behave as irrationally as it sometimes does.

Kalicocat profile image
Kalicocat in reply totattybogle

So sorry, I meant to post to the OP. I apologize

tattybogle profile image
tattybogle in reply toKalicocat

i'm sorry too , i should have checked who you meant before going off on one x

MirandaIV profile image
MirandaIV in reply tojimh111

If I have read these studies correctly, the JACC study was done on patients who were not on replacement thyroxine of any kind. Therefore I don’t think we can draw conclusions as to whether therapeutic induced low TSH causes increased AF. The BMJ study was interesting as I believe the conclusion was that there is little increased risk of both bone fracture and heart disease with low TSH. They seem to conclude that high TSH was more of the problem. The study was done on people who were already diagnosed with hypothyroidism and presumably on medication.

Please feel free to correct me if you don’t feel that I have interpreted the studies correctly. 🙂

Dancing_dragonfly profile image
Dancing_dragonfly in reply toMirandaIV

I agree with all you stated!

jsy_girl profile image
jsy_girl in reply tojimh111

I have always struggled to get my fT3 levels high in range. And adding lio in hasn’t especially helped with this. But I do also think it’s to do with the test. I did one with thriva recently and that had my fT3 almost maxed out in range on 30mcg lio a day. I take my last dose of lio 10-12 hours before testing in the morning.

raglansleeve profile image
raglansleeve in reply tojimh111

I've looked at Fig. 1, and for Atrial Fibrillation, I only see a very flat line running across the graph opposite the number 1 on the graph to the left (stroke or TIA). I'm not great at reading scientific material, so am wondering how to see the details of people lower than 1. I'm not even sure I've explained my problem here, lol.

tattybogle profile image
tattybogle in reply toraglansleeve

I think ? you might be looking at it the 'wrong way round'

The line marked 1.0 that runs across the page horizontally is the 'hazard ratio'

Hazard ratio is shown up the side of the graph 0.6/1.0/1.4/1,8/2.2

TSH level is shown along the bottom of the graph 0 - 0.1 /0.1 - 0.4 / 0.4 -1 /etc

As the TSH goes below 0.1 (going left from 0.1) the blue line goes up sharply (higher hazard ratio)

jimh111 profile image
jimh111 in reply toraglansleeve

In addition to tattybogle 's comment I was referring to the second graph on the left "Stroke or transient ischemic attack" which shows a distinct increase in risk as TSH goes below 0.1 as well as a smaller increase in risk for atrial fibrillation. Bear in mind that TSH increases exponentially as fT3 and fT4 fall. This means there are big differences between e.g. TSH = 0.1 or 0.05.

As I pointed out there are similar risks when TSH goes above 4.0 and exceptional risks of heart failure and mortality (which is somewhat important).

Gcart profile image
Gcart

Jim. AF is a risk after the age of 40 and at 60 yrs rather more common. This is in the general population What is interesting would be what percentage increase are the endos suggesting in people with thyroid disease , in particular suppressed TSH ?

Tench87 profile image
Tench87

Yes I have experienced artial fibrillation and it not pleasant caused by an undiagnosed overactive thyroid. I woke up in the middle of the night with a twitch in my chest turned out my heart was beating 230 beats per minute and wouldn't slow down so had cardio version (heart stopped by electric shock). Layed on a hospital bed for a week before being diagnosed then put on 80mg propranolol and 40mg carbimazole for 12 months. This was 4 years ago when I was 31 in remission now blood test twice a year.

Dancing_dragonfly profile image
Dancing_dragonfly in reply toTench87

Your experience sounds like the classic fears of AF with undiagnosed hyperthyroidism, in people not on thyroid meds. Docs sometimes forget to differentiate from hypothyroid people on medication.

AppleOrchard profile image
AppleOrchard

My TSH has been suppressed for almost 18 years. My endo (Dr Toft) told me it was fine as long as my T3 was in range. My T4 was always the higher end of normal. I have just started taking T3 (self prescribed) because my T3 was only 29% through the range and my T4 was out of range (too high).

He always said that the risks of AF and osteoporosis were exaggerated if the above was true and he was happy to have my TSH suppressed.

There are definitely issues if your T3 is too high.

SecondAngel profile image
SecondAngel

I have a question relating to this too.... if you do get AF due to too much levo, does reducing your levo dose at that point stop the AF?

FancyPants54 profile image
FancyPants54 in reply toSecondAngel

I have permanent AF now. I've had it for some years and before that spasmodic AF. I've had it longer than my hypothyroid diagnosis but my experience is that AF will come and go of it's own accord and nothing I've done to my thyroid status has changed it. I've taken T3 in the past with Levo and stopped it when I first went into permanent AF. No difference. I have never had high T3 results but I've struggled for years to get my T3 much beyond 25% of the reference range. I'm now adding T3 again and I am not afraid of AF because I inherited it from my Dad (his brother and sister both had it too). I first got it when I was in my 40's and slim and very active and fit. And it's carried on from there with hypothyroid coming into it on the way.

My AF is annoying but I can live with it. My hypothyroidism I loath as it's ruined my life.

Sallyplum profile image
Sallyplum

I was lucky enough to have Dr Barry Durrani-Peatfield as my thyroid advisor. He strongly recommended you don’t worry about numbers but simply take an adequate dose of thyroid supplement to feel well. I take maximum in the winter months 6x20mcg tabs daily alongside NDT. I don’t have heart problems and am most definitely not hyper. In summer months the dose is lower and I reduce and raise according to how I feel.

Obviously I am taking a high dose and my needs are different to yours but I am simply demonstrating to you that maybe your doc has read some research done by big pharma to promote thyroxine. I have striving history of heart disease in my family; brother had Heart attach aged 35 Mother had several before age of 60.

However, I also have a very strong history of hypothyroidism in my family with my uncle, (mother’s brother) born with Cretinism/hypothyroidism. I believe my families heart disease was a result of poorly or absent treatment of their hypothyroidism.

Bridal Barns, who Peatfield trained under in US, did much research regarding this subject. He would say if thyroid adequately treated then heart disease will disappear.

I have taken this dose for 15years or more with no effects.

Indeed I find if I increase T4 (ndt) too high then I am more likely to get tachycardia and heart palpitations. Drs are mad to think anyone would continue a too high dose when getting these symptoms; it’s not a nice feeling and you’d be inclined to reduce your dose if this happened. The feeling goes quite quickly so long as you reduce your dose.

make sure you’re hydrated adequately with good water intake. Also I take a magnesium supplement when I remember!!! Tehe as we hypoT’s are prone to low magnesium etc. Magnesium will calm your heart and your body in general. I also take CoQ10 again when I remember; your heart muscle cells have many multiple more mitochondria than other cells and therefore use more energy.

If i keep these heart nutrients topped up along with water I certainly am fine and have no heart issues on the amount I take which is much higher than you speak of.

Indeed when looking at literature it is those taking thyroxine that suffer with issues in far greater numbers. Ok you’ll say far more ppl take thyroxin and I accept that in U.K. definitely but that’s cos we’re denied t3 which makes us well.

I take no other medication.

I think worry the risk is very low if not none existent. They try to scare you re T3.

Best of luck.

Sallyplum profile image
Sallyplum

I eluded to it in my long post; you are at very high risk of heart disease if you remain hypothyroid. For example at my worst my pulse was 40 weak and thready, I often suffered postural hypotension and would faint or suffer dizziness. I couldn’t do very much and my brain didn’t work well.

This put me at very high risk of stroke and heart attack from clot formation cos the blood was not being adequately pumped through the vessels allowing stagnation and clotting to occur. I was terribly exhausted all of the time, felt slightly better when lying down and of course was breathless with lower oxygen levels.

Don’t worry about numbers but do be aware of how you feel. My TSH was never high cos I have a pituitary problem after Sheehan’s (haemorrhage during pg) so it took 40 years to get diagnosis hypoT, thanks to meeting Peatfield bless his soul. My TSH, as you can imagine is completely suppressed I prefer any risk associated with that compared to how I used to be; a Zombie.

Stay strong in your belief you are right.

Best of luck.

tattybogle profile image
tattybogle

an old reply of mine listing other posts discussing low TSH/risk that may be of interest to anyone who hasn't read them yet: healthunlocked.com/thyroidu... (3rd reply down )

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

VISUAL AID :

The graph below is what helped me get risks for cardiovascular disease and osteoporosis fractures into perspective, Doctor's often tell us they are really concerned about these, as well as AF:

The 'normal' section in the graph is TSH 0.4 - 4 , the 'high' section is TSH 4 and above.

Look at the height of the risk level in the 'high' TSH section, and compare it the allegedly hideous risks we face in the 'supressed' TSH section........

Then ask yourself ..... when was the last time a GP shouted at you about the risks you were taking with your heart or bones by allowing your TSH to remain at 7, or 8 ? ... Never.

And it's not that the people who made the NICE guidelines haven't seen this graph.. they have seen it ..... and they used this study as part of the evidence to create the guidelines that say "supressed TSH increases risk of ... " ... they just 'forgot' to mention the bit about TSH 0.04 -0.4 being no greater risk than 'normal' , or the part about the risks for 'high' TSH being HIGHER than the risks for supressed TSH .

academic.oup.com/jcem/artic... (This study also contains another graph specifically for "dysrythmia's " which i assume includes AF , to see it go to study and See fig 1 (B) shows the risk IS increased for 'supressed 'TSH , but the risk for 'high' TSH is worse)

Figure 2. Plot showing the association between TSH concentration on log relative risk of cardiovascular disease (plot A) and osteoporotic fracture (plot B)

...
Dandelade profile image
Dandelade in reply totattybogle

Thanks for these graphs tattybogle and all the other posters with links to studies. They are fascinating and very helpful in making decisions.

I just don’t understand the guidelines and subsequent obsession with suppressed TSH when these studies exist. Do you think it’s because the nhs would then have to start treating “subclinical” hypothyroidism and bring the range down from a tsh of 10, thus costing a lot of money?! Is there another side I’m just not seeing?

tattybogle profile image
tattybogle in reply toDandelade

"Do you think it’s because the nhs would then have to start treating “subclinical” hypothyroidism and bring the range down from a tsh of 10, thus costing a lot of money?! "

yes :)

Dancing_dragonfly profile image
Dancing_dragonfly in reply totattybogle

OMG 10?? I’d be comatose at a 10. In the US the TSH goes to a high of 3 in current labs and 6 in older lab ranges. Any doc that still thinks a TSH over 2 is ok- will never be my doc!

tattybogle profile image
tattybogle in reply toDancing_dragonfly

Dancing-dragonfly

I think i would have effectively comatose too . They do let some of us have treatment before '10 ' ... but only if they feel like it , they are not obliged to.

If we are over range twice ( 3 months apart) + symptoms, they 'may consider a trial of Levo to see if getting TSH back into range improves symptoms'... and if TPOab are positive that makes treatment more likely.

I 'only' had 5.7 /6.8 then got treated, but i think the decision was mainly made due to my TPOab being 2499[0-50] ...... i suspect i would have had to wait a lot longer if they were not so high.

Dancing_dragonfly profile image
Dancing_dragonfly in reply totattybogle

That is terrible! I can tell right now- as a health care professional I would ALWAYS be in trouble if I worked in the UK! I would love to live there as I have spent lots of time in the London area and feel quite at home. Traveled the length and breadth of UK as well. So expensive though! One day…..😉

Dandelade profile image
Dandelade in reply toDancing_dragonfly

I was 14.5 on diagnosis 😂 can confirm I felt like you’d imagine!

Dancing_dragonfly profile image
Dancing_dragonfly in reply toDandelade

My goodness! Hope you’re feeling far better now.

Dandelade profile image
Dandelade in reply toDancing_dragonfly

Thank you I’m a lot better now!

jsy_girl profile image
jsy_girl in reply totattybogle

Thanks these graphs are really interesting, not only to see the relative risk to being within the reference range but also in relation to that upper +++ end. I feel it comes down to more how you feel now. Plus I’m never sure with my blood tests either. One time you’re suppressed, another time you’re not.

TaraJR profile image
TaraJR

I asked 2 endos who are well known nationally, is it a suppressed TSH or high/over range T4/T3 that can lead to problems eg osteoporosis or A Fib? They both said it's the T4/T3 levels eg "An interesting question and a subject of debate. It's the T4/T3 really, as bones are sensitive to thyroid hormone levels, rather than a suppressed TSH. But a US study showed a fully suppressed TSH can lead to some osteoporosis in mice.. You should generally avoid both."

"T3 often suppresses TSH. You can take enough T3 which doesn't suppress TSH. But if that's the only way to feel well, you may want to do that, though it's not ideal. Its a trade off - low quality of life versus taking a risk. It is a low risk"

"At the end of the day, it's only T4 and T3 that matter. TSH doesn't matter as it's not acting on tissues. But we use TSH to judge on average what is happening in tissues. It's the levels in the cells that matter."

I know the risks of a suppressed TSH are low, so I'm sticking with the above, My life before T3 was awful and I wasn't bothered if I was here or not. Quality of life now is vastly better, and I'm willing to take to very small risk.

The decision should be a joint one between dr and patients, as on so many other things.

tattybogle profile image
tattybogle in reply toTaraJR

i agree...... mind you i'm really worried about my mice now..... if my TSH is supressed, will they break their legs when they're jumping down from the top shelf in the pantry ?

TaraJR profile image
TaraJR in reply totattybogle

I haven't laughed that much for a while! Poor mice

tattybogle profile image
tattybogle in reply toTaraJR

🐹🐹🐹 Don't worry, i've taken the risk seriously .. i'm going to build them a little ramp

TaraJR profile image
TaraJR in reply totattybogle

Thank goodness someone's looking out for them!

Dancing_dragonfly profile image
Dancing_dragonfly in reply totattybogle

😂👏🏻

Lovecake profile image
Lovecake

Thank you for posting this. My endo writes in a similar way. They seem to not want to be seen to be encouraging any patient to take any thyroid medication that looks bad on paper, regardless of how we feel.I’m only taking 12.5mcg of T3 but my TSH on the last test was 0.01

FT4 14.4 (11.2-20.2) and FT3 5.9 (3.2-6.8)

He panicked and asked me to reduce my Levo from 650mcg per week to 575mcg/week. He wanted to get my TSH back up to 0.02 like it was before I added an extra 2.5mcg/day of T3.

Doesn’t sound like much, but it made me really ill and extremely fatigued within 3 weeks!

So we had a chat and he then said he was “treating a human being not a number” and for me to back to the dose I felt good (actually REALLY good) on. It’s taken more weeks, but I’m getting there (again 🙄).

He said about the 6% chance of a stroke………….. I get migraines and take Imigran (sumatriptan) to stop them. As far as I am aware there’s a risk of getting a stroke because of migraines and taking Imigran………… when my thyroid levels are correct for me I get fewer migraines/take fewer tablets.

When my thyroid levels are too low I do next to nothing - I feel this will be causing more health issues……….

I had a TSH of 5 for at least 3 years before it got to 10 and I was officially “diagnosed”. (I knew nothing back then).

Before I had T3 I really struggled unless I did next to nothing. I felt there wasn’t any point being here to be honest.

Now I look after my 2 year old grandson twice a week. I do running, jumping, skipping and even dancing with pom-poms. I could not do this with him if I didn’t have the T3. I still have a few bad days, but it’s not too bad.

So here’s hoping that you and I have many good years left in us (and everyone else on this amazing group). ☺️🧁

jsy_girl profile image
jsy_girl in reply toLovecake

Thanks for your reply. I’m amazed how much interaction I’ve had from this post. I have lots to go away and read. It is interesting I feel like this has made me consider whether I do need such a “high” dose. I put that in inverted commas because I’m not convinced it is high I just don’t think the healthcare professionals like us to be on it at all. I might try seeing how I feel on a lower dose. Even tempted to go back to levo and see what happens. But I guess it’s good because I can educate myself and decide for myself but at least my doctor is happy to let me make that decision. It’s hard for me to say I feel really well now vs before because I always feel a bit tired and not quite right. But he asked me if I was getting pins and needles anymore and I realised I haven’t had them for ages. They’ve completely gone away. And that’s surely an indicator that you’re better than you were?

It’s frustrating that there isn’t a right answer. It’s all just a blur in the middle and we all just have to figure it out for ourselves. Thank goodness once again for this group! I’d be lost without it.

Lovecake profile image
Lovecake in reply tojsy_girl

I totally understand.My TSH has never been over 0.07 since starting on T3.

It was never high when on Levo only but I struggled and never felt right. It was always below range and neither FT4 or FT3 over 75%. And the lack of energy if I dared to have a sort of “busy” day could last up to 4 days before I recovered.

You are doing the right thing by gathering information. I’m doing that too and hoping that in the meantime we manage to feel well enough to “live”.

You take care now.

It would be good for you to post again with any updates. I for one will be hoping they will be positive ☺️

jsy_girl profile image
jsy_girl in reply toLovecake

Thank you, you as well. I’ll give you a follow

Kalicocat profile image
Kalicocat

Did you try a lower dose of T3? I take 5.5 mcg Liothyronine along with 75 mcg levothyroxine. I feel perfect and my TSH is perfect. No one needs that much thyroid hormone. It is not wise to suppress TSH.

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