Advice please: After going into atrial... - Thyroid UK

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Advice please

Ann-Simpson profile image
56 Replies

After going into atrial fibrillation my consultant wanted to get my TSH levels such that I can have a successful cardioversion. this meant that I had to reduce the level of T3

So these are the latest blood results and I would be very grateful for advice. I am seeing the consultant in a week or so, and would like to be as well informed as possible. I can only say I feel quite unwell all of the time.

At present I am taking 75mcg thyroxine and 12.5mcg T3 daily

CRP HS 4.23 (0-5)

Ferritin 77.00 (13-150)

Folate-serum 5.24 (>3.89)

Vitamin B12 active 95.500 (37.5-150)

Vitamin D 81.50 (50-200)

TSH 0.30 (0.27-4.2)

Free T3 3.32 (3.1-6.8)

Free thyroxine 11.600 (12-22)

Thyroglobulin antibodies 21.600 (<115)

Thyroid peroxidase antibodies 35.50 <34

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Ann-Simpson profile image
Ann-Simpson
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SeasideSusie profile image
SeasideSusieRemembering

Free T3 3.32 (3.1-6.8)

Free thyroxine 11.600 (12-22)

I can only say I feel quite unwell all of the time.

With those results it's hardly surprising! Below range FT4 and almost bottom of range FT3, they are showing that you are hypothyroid.

What were your results before your dose reduction and what dose(s) were you taking?

Ann-Simpson profile image
Ann-Simpson in reply to SeasideSusie

Thank you for your help with my results. I am seeing the endo this week, and just want to check, am I right in thinking it would be a good idea to suggest a trial on T3 only, and please can you just confirm where the FT3 and FT4 should be in the range respectively or do they both need to be near the top of the range. I have a feeling one should be higher than the other but can’t quite remember! Ann

SeasideSusie profile image
SeasideSusieRemembering in reply to Ann-Simpson

Anne-Simpson

What were your results before your dose reduction and what dose(s) were you taking?

You haven't answered this question and without knowing any previous history of doses/results on those doses and how you felt it's not possible to suggest anything really.

am I right in thinking it would be a good idea to suggest a trial on T3 only,

I wouldn't have thought so.

please can you just confirm where the FT3 and FT4 should be in the range respectively or do they both need to be near the top of the range.

When on Levo only most hypo patients feel best when they're pretty well balanced in the upper part of their ranges, but every one is an individual so that's just a generalisation.

When on Levo plus T3 it's very individual to each of us where we need FT4 and FT3, some are fine with lowish FT4 as long as FT3 is in the upper part of range, some of us need them fairly well balanced over half way through range. We just have to experiment and gradually tweak doses to find our own sweet spot, it's not something that anyone can tell you.

Ann-Simpson profile image
Ann-Simpson in reply to SeasideSusie

So the previous results in March 2021 were TSH 0.01(0.27-4.2)Free T3 4.45(3.1-6.8)

Free T4 14.600(12-22)

I was taking 100mcgs Thyroxine and 18 mcgs T3 daily.

Then later in 2021 he heard about the AF and over the phone in November 2021 reduced the T4 to 75mcgs and the T3 to 12.5 mcgs daily To try and get rid of the AF.and the last results taken were with the latest amount of medication

I know I am not at all well on this regime, so need to go armed with as much information as possible. Personally I would leave the AF for the moment and talk to the cardiologist about that later. I am needing at some point a new aortic valve.

SeasideSusie profile image
SeasideSusieRemembering in reply to Ann-Simpson

I think the first thing you should do is go back to the previous dose of 100mcg Levo plus 18mcg T3. Hopefully this will bring your levels back to something like they were before. Once you've reached that point you then have to decide how to go forward.

If they were my results, going purely from my own experience of combination thyroid hormone replacement, I'd increase my Levo to bring my FT4 up further which should also raise FT3 depending on how much natural conversion there is. I would retest and re-evaluate how I felt after 8-10 weeks which would then help me decide if I needed to tweak further.

Ann-Simpson profile image
Ann-Simpson in reply to SeasideSusie

That is taking more thyroxine first my peroxide antibodies were 35.50(<34) showing poor conversion and wouldn’t my TSH levels then be suppressed too much more than ever?

SeasideSusie profile image
SeasideSusieRemembering in reply to Ann-Simpson

That is taking more thyroxine

Yes I realise that, and that is what I would do. Taking a higher dose of Levo will raise your FT4 and your FT3, how much your FT3 would rise depends on how much natural conversion you still have. Just because you are taking T3 doesn't mean that you don't need Levo or that you do need a below range FT4 level.

I would get your FT4 back up into range, ideally to where it was before as a start. You said you are feeling quite unwell with those results, your FT4 is under range and my own personal experience is that an FT4 even as low as below mid-range makes me very unwell, I'd be be bed bound with your level of FT4, so my first thought is to get it back to where it used to be

first my peroxide antibodies were 35.50(<34) showing poor conversion

Raised thyroid antibodies confirm autoimmune thyroid disease is the cause of your hypothyroidism, it does not confirm poor conversion. Poor conversion is shown by looking at your FT4 and FT3 levels when on Levo only and FT4 will be high and FT3 will be low.

wouldn’t my TSH levels then be suppressed too much more than ever?

Taking more T3 is going to suppress your TSH anyway.

Ann-Simpson profile image
Ann-Simpson in reply to SeasideSusie

Thank you so much. And lastly to prepare more for the appointment how do I persuade him that the AF will have to take a back seat, and it could be because I am under medicated anyway. Incidentally I have put on a stone in weight since the meds were changed! Not a comfortable outcome on top of everything else going on! Ann

SeasideSusie profile image
SeasideSusieRemembering in reply to Ann-Simpson

And lastly to prepare more for the appointment how do I persuade him that the AF will have to take a back seat,

Sorry, I have no idea. I have had a GP walk out of the consulting room following an episode of tachycardia and he blamed it on taking too much Levo despite me having a history of sporadic tachycardia for the last few years not related to overmedication. Because I politely refused to lower my dose, explaining my history and not being overmedicated, he just would not discuss it and removed himself completely. The fact that I have had suppressed TSH for well over 20 years, FT4 and FT3 well in range, have 47 years of being diagnosed and medicated for hypothyroidism and know my body well, this doctor who doesn't know me obviously thought he knew better!

Incidentally I have put on a stone in weight since the meds were changed!

Classic symptom of hypothyroidism and confirms your undermedication along with the evidence of your low thyroid hormone levels.

Ann-Simpson profile image
Ann-Simpson in reply to SeasideSusie

Good morning, your reply is in line completely with my experience! So on into battle tomorrow! Thank you for all your help. Ann

SeasideSusie profile image
SeasideSusieRemembering in reply to Ann-Simpson

Good luck! Let us know how it goes.

Ann-Simpson profile image
Ann-Simpson in reply to SeasideSusie

Hello,So I fought my corner while he was telling me he is the best endocrinologist in the country! I said that is why I go to him which made him quiet for a moment! And he is very concerned by the AF and tells me that the heart and need for a new hip all make me tired. However he has put up both medications by a little and I feel a lot better today two days on. So will to re-visit it all when the hip and heart valve are done and possibly have to live with the AF. And now tests on my kidneys have come back as not functioning properly and on it goes. Am wondering if that is all the medication I am having to take, blood thinners etc. Ann

humanbean profile image
humanbean in reply to Ann-Simpson

So I fought my corner while he was telling me he is the best endocrinologist in the country!

That level of arrogance is astonishing. I wonder how many other endocrinologists think the same about him - or themselves.

Ann-Simpson profile image
Ann-Simpson in reply to humanbean

It certainly is. They all have a rather inflated opinion of themselves I think but we are very much at their mercy and it looks like they have to weigh up all the different problems and come up with the best compromise. Or is that being rather kind?

humanbean profile image
humanbean in reply to Ann-Simpson

we are very much at their mercy

Sorry, but I'm going to disagree with you there. I would never voluntarily see an endocrinologist for hypothyroidism. I'm not sure I would agree to see one for diabetes either.

Ann-Simpson profile image
Ann-Simpson in reply to humanbean

Ok thank you so whom would you recommend to see as I am up for any advice to help with it all

humanbean profile image
humanbean in reply to Ann-Simpson

I'm not sure - but I got most of the help I needed from forums like this one. Sometimes I had to teach myself. But I am a fairly confident experimenter (on myself) and I know that many people aren't.

There is a lot of fear about thyroid hormones, for example, which is usually unjustified. If that applies to you, you might find this link helpful:

healthunlocked.com/thyroidu...

Ann-Simpson profile image
Ann-Simpson in reply to humanbean

Thank you for your help and I will read the link you have sent me

greygoose profile image
greygoose

TSH has nothing to do with hearts. It doesn't matter what the level is. Being hypo causes problems with hearts and you are very hypo. Is this consultant an endo or a cardiologist?

Ann-Simpson profile image
Ann-Simpson in reply to greygoose

He is an endocrinologist.

greygoose profile image
greygoose in reply to Ann-Simpson

OK, so in actual fact, he knows next to nothing about thyroid. 99.9% of endos are diabetes specialist who just think they know about thyroid. This is born out by the fact that he doesn't recognise that you're still hypo despite the low TSH.

Ann-Simpson profile image
Ann-Simpson in reply to greygoose

I am struggling to find someone who will understand it all. I am seeing the cardiologist next week, but if you know of anyone good please can you message me privately. I have been going to my present endocrinologist for about five years. I live in Gloucestershire thank you very much

greygoose profile image
greygoose in reply to Ann-Simpson

Sorry, I don't live in England, so don't know anyone. But talk about it to your cardiologist, they often know more than endos. :)

SlowDragon profile image
SlowDragonAdministrator in reply to Ann-Simpson

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who do prescribe T3

tukadmin@thyroiduk.org

Many private endocrinologist are still doing consultations on zoom

SlowDragon profile image
SlowDragonAdministrator

What were Ft4, Ft3 and TSH before dose reduction

These results show you are now under medicated

heart.bmj.com/content/84/4/... replacement with thyroxine?

There is some concern that administering thyroxine in a dose which suppresses serum TSH may provoke significant cardiovascular problems, including abnormal ventricular diastolic relaxation, a reduced exercise capacity, an increase in mean basal heart rate, and atrial premature contractions.12 Apart from an increase in left ventricular mass index within the normal range, these observations have not been verified.13 Moreover, there is no evidence, despite the findings of the Framingham study, that a suppressed serum TSH concentration in a patient taking thyroxine in whom serum T3 is unequivocally normal is a risk factor for atrial fibrillation.

Atrial fibrillation can occur with low Ft3 or low Ft4

pubmed.ncbi.nlm.nih.gov/175...

60 patients (22.4%) had low FT3 levels (<2 pg/ml) and 24 patients (9%) had low FT4 levels (<0.9 ng/dl).

Ann-Simpson profile image
Ann-Simpson in reply to SlowDragon

The TSH was 0.01 (0.27-4.2) the free T3 4.45 (3.1-6.8) and free thyroxine 14.600 (12-22) he is worried about the atrial fibrillation and tells me it will never be remedied unless the TSH is in better range. Trouble is they speak with such authority and I don’t always know the question to ask!

SlowDragon profile image
SlowDragonAdministrator in reply to Ann-Simpson

diogenes might have some research links that may help

Is this a heart specialist or endocrinologist on about TSH

Ann-Simpson profile image
Ann-Simpson in reply to SlowDragon

It is the endocrinologist

SlowDragon profile image
SlowDragonAdministrator in reply to Ann-Simpson

Do you have a heart specialist Ask them

Many heart specialists are aware you need GOOD Ft3 and aren’t that bothered by suppressed TSH

Ann-Simpson profile image
Ann-Simpson in reply to SlowDragon

Well I am seeing a cardiologist next week so will talk to him about it all. Would you avoid seeing an endocrinologist all together? And will. Cardiologist be able to set the thyroid medication?

SlowDragon profile image
SlowDragonAdministrator in reply to Ann-Simpson

Take your thyroid results with you from last few years and explain you’re on levothyroxine plus T3 so TSH is almost always suppressed

Ann-Simpson profile image
Ann-Simpson in reply to SlowDragon

Thank you I will do that.but will he be able to advice on setting the right amount of medication?

SlowDragon profile image
SlowDragonAdministrator in reply to Ann-Simpson

Possibly not, but he can advise endocrinologist to ignore the TSH and ensure you have adequate Ft3

Ann-Simpson profile image
Ann-Simpson in reply to SlowDragon

That is good advice and I will do that thank you

shaws profile image
shawsAdministrator

It's no wonder you had palpitations due to having an FT3 at the bottom of the range. We need FT3 to be towards the top not bottom. T3 is needed in the millions of T3 receptor cells in our body and the brain and heart have the most T3 receptor cells. I suppose you could call T3 "the engine".

If we don't have sufficient T3 to saturate all of our T3 receptor cells we will feel unwell. I will also state I am not medically qualified. I take T3 alone and have no clinical symptoms and feel well.

Having T3 at the bottom of the range I would suggest that your dose is too low.

If we have hypothyroidism, we need - at the very least - to have sufficient thyroid hormone replacements to bring our TSH to around 1 or lower and both FT3 and FT4 should be towards the top.

I would suspect that having such a low T3 that your body cannot function optimally as heart and brain have the most T3 receptor cells.

Imaaan profile image
Imaaan in reply to shaws

Hello,

Ann-Simpson, I hope you dont mind me asking Shaw some questions on your post.

Shaw, I remember from your profile that your tsh was at 100, did you experience high or low cortisol issues from it? Also I'm wondering how you were able to tolerate incorporating and increasing your t3 whilst experiencing palpitations/tachycardia? Approximately how long did it take you to get on the dose you're on currently? Do you take it ine one dose or split up through out the day? If split, can you share your dosing cycle? Thanks in advance.

shaws profile image
shawsAdministrator in reply to Imaaan

I always take one daily dose when I awake with one glass of water and wait an hour before I have breakfast.

All symptoms evaporated as did the palptations when I took T3 only. The palpitations were during the night and I had beside my bed ice-cold water that I could sip whilst wrapping around my neck and ice-cold towel.

It was levothyroxine that gave me severe palpitations etc. I had overnight links to local Cardiologist who couldn't figure out why this was happening and was contemplating putting an implant into my heart to see what was going on'. Just about that time I was given some T3 to add to T4 and I immediately had a good response to both, but it was when I took T3 alone that all my symptoms resolved. I never consulted the Cardiologist again.

I never had cortisol checked and when we feel very, very unwell and haven't a clue what's happening it is a great relief when symptoms resolve.

I've always taken one daily dose, when I get up a.m. and swallow with one glass of water and wait an hour before I eat.

I follow Dr John Lowe's advice who was an Adviser to TUK at the time. Dr Lowe had an accident that caused his death.

On the link below are several links re Dr Lowe who resigned his Licence so that he could help/advice many people without being pursued for not following the guidelines laid down.. Two or three of our doctors were pursued as criminals due to treating patients as they were taught as junior doctors

google.com/search?client=fi...

I consulted with the two doctors who were trained properly about how to diagnose patients without blood tests (weren't available when they were young doctors) and it was all dependent upon symptoms alone.

One was Dr Barry Peatfield and the other Dr Gordon Skinner. Since Dr Sinner died, his staff have collated all of their studies they did over the years and hope to publish when they have sufficient funds - whenever that will be. They stated that it would shake up the medical personnel.

Imaaan profile image
Imaaan in reply to shaws

Your journey gives hope to others. Thnxs for sharing. Can you share how you dose through 24h ? Plus what dose of t3 are you on? Thnxs in advance

shaws profile image
shawsAdministrator in reply to Imaaan

I take 20 mcg or 25mcg T3 daily (depending on what tablet I have) - when I awake with one glass of water and wait an hour before I eat.

I have symptom-free days and feel well.

I had severe palps on levo only - sometimes heart beat was over 160 b,p.m. and it was usually in the middle of the night and husband had to get out of the freezer an ice-cold towel that I wrapped around neck whilst sipping ice-cold water.

I don't need any of that now, thankfully.

google.com/search?client=fi...

Imaaan profile image
Imaaan in reply to shaws

160...o my God, I thought I was struggling with 123. Thank you for taking the time to respond, it's much appreciated. Thnxs for the link

shaws profile image
shawsAdministrator in reply to Imaaan

It is scary when our hearts go above 60 for no reason at all. At first we've no idea what's happening and eventually figure it out.

Imaaan profile image
Imaaan in reply to shaws

Especially when it happens in the middle of the night.

shaws profile image
shawsAdministrator in reply to Imaaan

Definitely.

I used to put a wet towel I kept in the freezer and I wrapped it around my neck during the night when palps went haywire . It did work but thankfully that no longer occurs.

Imaaan profile image
Imaaan in reply to shaws

I might just try that ;)

shaws profile image
shawsAdministrator in reply to Imaaan

I also sipped ice-cold water and controlled breathing - when possible - which helped too.

shaws profile image
shawsAdministrator in reply to Imaaan

The cardiologist couldn't figure what caused my palps particularly during the night as I had a number of 'overnight recordings' and he was contemplating putting an implant in my heart 'to see what was going on'. Thankfully I didn't need it as T3 was prescribed. Initially T4/T3 then T3 alone and heart calmed down.

Imaaan profile image
Imaaan in reply to shaws

Thank God that you didnt have to go down that route and you discovered t3

shaws profile image
shawsAdministrator

Were you first diagnosed as having "arrhythmia" or hypothyroidism?.

Ann-Simpson profile image
Ann-Simpson in reply to shaws

I have been on thyroid medication for 25 years. And the atrial fibrillation came on two years ago. I am also needing a replacement aortic valve which is deteriorating and my surgery now says they have picked up some kidney disjunction so I am struggling on a few fronts. I wonder if I should be on T 3 alone rather than a combination. I have the gene that means I definitely need T3.

shaws profile image
shawsAdministrator in reply to Ann-Simpson

I am not medically qualified but, personally, I would request a trial of T3 only. You wont know what your body prefers until you have had a trial.

I am sorry you've had heart problems too. Both brain and heart have the most T3 receptor cells. I'm sorry you've developed heart problems and it must be very worrying for you. I had horrendous palpitations on levothyroxine but T3 resolved them.

When I took levothyroxine initially I had severe palpitations during the night and the cardiologist was puzzled and was contemplating putting an implant in my heart 'to see what was going on'.

Just then T3 was added to T4 and I felt an immense change in heartbeats and I then took T3 alone and heartbeats calmed altogether. I needed no implant.

Ann-Simpson profile image
Ann-Simpson in reply to shaws

Thank you that is very useful information and I will certainly ask if I can try just T3 for a period to see how it all goes. The strange thing is I am unaware of any palpitations and so don’t know when the beat is irregular.

humanbean profile image
humanbean

Having low levels of T3 is not good for the heart.

ahajournals.org/doi/10.1161...

Your level of T3 isn't as low as the people in the study but in your shoes I would want to improve both that and your Free T4 as soon as possible.

After reducing your thyroid hormone levels, how long did this man expect you to be left untreated for your atrial fibrillation?

Ann-Simpson profile image
Ann-Simpson in reply to humanbean

I am not sure what treatment of the AF he was considering other than raising the TSH and then doing another cardioversion which didn’t work the time I had one previously

humanbean profile image
humanbean in reply to Ann-Simpson

Doctors are convinced that over-medication of hypothyroidism leads to atrial fibrillation and/or tachycardia (fast heart rate).

They also believe that people with untreated or under-treated hypothyroidism may lead to bradycardia (slow heart rate).

All of these statement might be true and often are true, but they definitely aren't guaranteed to be true.

For example, hypothyroidism often leads to very low nutrients. Low iron and/or ferritin are common in untreated or poorly treated hypothyroidism, and even if treatment levels are good, problems can arise from low iron / ferritin.

And low iron and/or ferritin, when it is severe enough, can lead to chest pain and tachycardia.

So, what happens when people have hypothyroidism AND low iron and/or ferritin?

I have read comments on the forum from members saying that they have been told they can't possibly be hypothyroid (or under-treated hypothyroid) because their hearts are going too fast - which is absolute nonsense. Or alternatively they have been told they must be over-medicated on Levo because their heart rate is fast.

So, anyone with tachycardia should always have a full iron panel - but note improving iron with a prescription for a couple of months of iron supplements won't really cut the mustard - it can take many months, or possibly even a couple of years to raise iron and ferritin to optimal - if it is even possible. I suspect it would also be a sensible move to have an iron panel if someone had AF.

SlowDragon profile image
SlowDragonAdministrator

Low Ft3 is linked to poor kidney function

Your kidney function is almost certainly deteriorating due to being under medicated

ncbi.nlm.nih.gov/pmc/articl...

Chronic kidney disease (CKD) is characterized by a low T3 syndrome which is now considered a part of an atypical nonthyroidal illness. CKD patients also have increased incidence of primary hypothyroidism and subclinical hypothyroidism

academic.oup.com/ndt/articl...

In conclusion, this study showed that low T3 syndrome was highly prevalent in CKD and was a remarkable finding in early CKD. Furthermore, serum T3 levels were associated with severity of CKD even in the normal TSH level.

Ann-Simpson profile image
Ann-Simpson in reply to SlowDragon

Thank you so now I am on more medication both T4 and T3 let us hope the kidneys return to proper function. I am sending him the results of the kidney test done last week

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