Paper linking inadequate therapy to cardiac risks - Thyroid UK

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Paper linking inadequate therapy to cardiac risks

diogenes profile image
diogenesRemembering
19 Replies

New paper in Thyroid:

Thyroid Vol. 29, No. 3

Duration of Hyperthyroidism and Lack of Sufficient Treatment Are Associated with Increased Cardiovascular Risk

Mads Lillevang-Johansen, Bo Abrahamsen, Henrik Løvendahl Jørgensen, Thomas Heiberg Brix, and Laszlo Hegedüs

Published Online:13 Mar 2019 doi.org/10.1089/thy.2018.0320

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diogenes profile image
diogenes
Remembering
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19 Replies
shaws profile image
shawsAdministrator

I heave a heavy sigh when I read reports like that as it seems that no-one seems to be aware that we need our thyroid hormones to be optimal in order to run our whole system, from head to toe. How much unnecessary suffering do people have to go through before they get diagnosed but given medications instead of ensuring their hormones are also optimal.

jimh111 profile image
jimh111

Thanks for posting. There was a similar paper academic.oup.com/jcem/artic... published quite some time ago in the JCEM. It contains a nice graph in Fig 2 which clearly shows relative risk of cardiovascular disease for various levels of TSH. As can be seen from the graph the risks arising from a high TSH are greater than those from a low or suppressed TSH, even for a mildly elevated TSH. I've never heard of a doctor telling a patient with 'subclinical hypothyroidism' that they are in grave danger of a heart attack or stroke.

An important point to remember is that these studies implicitly assume the hypothalamic pituitary thyroid axis is functioning normally. This is not the case for many patients who have a lowish TSH which fails to reflect their low fT3 and fT4 levels.

Baobabs profile image
Baobabs in reply tojimh111

I have just returned from a consultation with my 8th Endo here in Saudi. He was strongly recommended, has a passionate interest in osteoporosis and treats patients from all over Saudi. He actually prescribes T3, realises not everyone with Hashi’s does well on T4, has extensive experience using T3 treatment BUT. ......... He still said to me a suppressed thy stim hormone could lead to cardiac problems within 5 years and heart failure which there is no recovery from. He’s worked with patients where this has happened. I really do rate him due to everything else he said but now feel I’ve been hit by a-bus all over again. Just what are we meant to believe. I mentioned evidence but no studies were offered. Why are these people continually giving the prophet of doom scenario? Who do we believe as without a suppressed thy stim hormone whilst taking T3 I couldn't function.

diogenes profile image
diogenesRemembering in reply toBaobabs

But if he doesn't measure FT3 I don't see how he can judge. It's easy to overdose with T3, so continual FT3 testing is essential, never mind TSH. TSH doesn't cause problems by itself, it simply can be a (rather dodgy) indicator of incorrect dosing.

Baobabs profile image
Baobabs in reply todiogenes

Yes he does test FT3. He has just ordered on my tests today. He does not seem happy with high in the range which does tend to suppress Thy stim hormone.

jimh111 profile image
jimh111 in reply toBaobabs

This is a difficult issue we all face. In general there is considerable exaggeration of the risks ASSOCIATED with a low TSH and ignorance of similar risks associated with even a mildly elevated TSH. As diogenes mentioned it is essential to measure fT3 and fT4, taking care to get the most accurate results by taking the blood inbetween doses, not leaving a day or two to make the numbers look good! As I mentioned TSH is only helpful if the axis is working correctly.

Some patients have a form of resistance to thyroid hormone (RTH), some have an impaired axis. Both of these groups will need greater than normal T3 serum levels, to overcome the resistance in RTH or to restore tissue levels in organs reliant on deiodinase if the axis is impaired. In both cases it is not possible to restore euthyroidism in all organs. This presents a dilemma as some organs will be hypo and some hyper (using the term looseley). Thus treating these patients will put them at risk. They will also be at (perhaps greater) risk if they are not treated or treated with levothyroxine only, they will also have a miserable existance.

This scenario is not unusual in medicine, it's quite common for therapies to carry risks, it's a question of assessing risk / benefit. It seems that the endocrine establishment is incapable of this standard of care and simply refuse to make their patients better.

Gcart profile image
Gcart in reply tojimh111

I dont know any of my numbers prior to TT for carcinoma in both lobes .

I was told they were euthyroid.

However I had many very fast heart beats per day randering me weak and needing to stop what I was doing . (Up to to 20 times) Most evening my heart would go in to a funny beat, which would be uncomfortable.

I now am using T4 plus T3 , my TSH. Is 0.002 , I have had no further problems of that nature !

I much prefer my situation now and am able to manage what I need to do.

What arr my choices ? I guess I know the answer.

Its been 3 yrs by the way .

Baobabs profile image
Baobabs in reply tojimh111

Yes I take on board what you say and my upset is because this new Endo is very well informed, experienced and obviously passionate in his field. I have no idea why these professionals don’t address the issues you mention such as hormone resistance but rather implicate absolutes and without actual research evidence to support their beliefs. I’m more convinced than ever that individual needs for thyroid hormones are quite specific and require very fine tuning. Perhaps many specialists don’t believe this or simply haven’t got the time to spend to determine what is a good level for someone. Whatever the reason, good, appropriate and perceptive treatment makes a world of difference to a patients quality of life.

TSH110 profile image
TSH110 in reply tojimh111

That’s interesting. I have DIO2 impaired conversion gene so I do convert but not efficiently (assuming it always has an effect if you have the polymorphism) I also have some thyroid resistance ones but have no idea of their significance. I felt very dreadful on Levothyroxine even when it was optimised (in theToft sense of the word) but I was told one of the hormones was not correct and I might always feel unwell ☹️ No mention of T3 or NDT of course. I took NDT in the end and what a transformation I felt really well again quite rapidly too. Heart pains that had plagued me for decades greatly improved, depression vanished energy levels returned to normal etc After two years I had to up the dose and although pretty good I have blips as you might say. I have added 4mcg of T3 and feel better in some ways but perhaps not in others. On reading your explanation I though mmm I wonder if that is what’s going on with me. Mind you I would happily die of a heart attack to have got the bonus years feeling decent

Baobabs profile image
Baobabs in reply toTSH110

OMG your account is like me looking in the mirror! I wonder if I too have the defective gene? I may see if I can get it tested. I kept a chart for my first year on Levothyroxine and felt increasingly worse. My Endo didn’t believe me . Even when over range for T4 my T3 hadn’t budged although was not very low. Perhaps not high enough for me? Hormone resistance? To return to your situation, but would you risk having a heart attack? Why in this day and age is this prevalent condition so poorly understood and so little researched?

TSH110 profile image
TSH110 in reply toBaobabs

It does sound like you could have the DIO2 mutation. The free t3 should be in the upper third of the range. Thyroid uk have a section about it and

the testing. It is quite costly but I dont think the NHS do it (now there’s a surprise 🙄) I had a 23&me test a few years back in the days when they included the DIO2 snps in raw data, but they no longer do this. If you had an older test you can look it up. I can tell you how if it’s relevant. That’s how I found out and the thyroid hormone resistance.

With regard to the heart attack stuff I would rather feel well (or as well as I can be) and risk a hypothetical and possibly spurious chance of cardiac arrest. Given I have very few heart pains in NDT/T3 I can’t believe I have a greater chance of a heart attack than I did on Levothyroxine where I had terrible and frequent heart pains which were becoming increasingly prevalent. It is quality not quantity of life that matters to me.

Baobabs profile image
Baobabs in reply toTSH110

Well I’m with you on the heart thing. How did you discover you have hormone resistance? I thought there was no test for this and no way of knowing how much blood serum of FT3 enters the cells? I have private medical cover here in Saudi and will try for the test just to attempt to answer another unknown regarding this disease. Thanks for all the information you have given!

TSH110 profile image
TSH110 in reply toBaobabs

There was some info about thyroid hormone resistance on likehacker with all the SNPs so I checked them in my 23&me raw data to see what I had and I had several that are implicated in Thyroid hormone resistance but I think the meaning of this is not fully understood as yet

Baobabs profile image
Baobabs in reply toTSH110

Oh I meant to add that I only ever suffer palpitations and spiking blood pressure when under medicated.

Baobabs profile image
Baobabs in reply toTSH110

Should heart checks be part and parcel of T3 treatment and low to suppressed thy stim hormone? What, just collapse with a heart attack period, no monitoring. This wouldn’t happen to anyone with heart disease? Just thinking out aloud.

in reply toBaobabs

thyroidresearchjournal.biom...

These authors have written some suggested guidance for combined treatment and there is a wee bit on monitoring there which may be helpful to you....

TSH110 profile image
TSH110 in reply toBaobabs

It would be a good idea. Because the NHS won’t support any of it (NDT, T3 combination therapy) you end up all on your own.

Katepots profile image
Katepots

I was never diagnosed whilst hyper and had Wolff Parkinson White syndrome, very frightening. Through my own study I’m sure it was linked to being hyper. I’m now hypo and self medicating and my ECG shows that I do not have it any more which is very interesting.

T3 levels are just so crucial to the body. Too much and a cardiac risk, two little and a cardiac risk.

Specialist really must start to understand this.

Baobabs profile image
Baobabs in reply toKatepots

And perhaps that correct amount for each individual varies, just to add more spanners in the works!

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