Lingering doubts over levo : medicalxpress.com... - Thyroid UK

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Lingering doubts over levo

Danielj1 profile image
27 Replies

medicalxpress.com/news/2018...

I know everyone will jump to the brands defence but it keeps me determined to manage off the lowest possible levo dose - again a controversial choice I suspect.

And no, I am not in my 60s yet. I have so little confidence in our U.K. guidance over any of all

this that I will keep my eye on all the risks out there as they are exposed.

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Danielj1
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27 Replies
Greybeard profile image
Greybeard

When these studies start to monitor ft3 instead of tsh I will take more notice.

helvella profile image
helvellaAdministratorThyroid UK

The lack of detail is staggering.

We have seen all too often indications and suggestions that too low a dose of levothyroxine might be worse than none. Unless and until this paper is available and shows proper evaluation of treatment, I refuse to endorse their claims. It could be that they all received too little. And this type of paper would tend to make any prescriber even more wary of prescribing an adequate dose.

Danielj1 profile image
Danielj1 in reply to helvella

I was told I had incurable asthma when I was younger and would be on steroids for life - within 6 months of diet and fitness the dose was reduced to zero, never really returned.

All i read on this thread is stories of terrible advice and angst and anxiety all around.

It feels awfully similar to my asthma experience really, only this time I have shared the journey and picked up a lot of help and support along the way.

I still feel there is just as likely odds that my levo dose will be much lower in a years time than now - despite experts stating my thyroid is supposedly getting worse by the month.

One day I do hope clarity prevails for all our benefit!

carolen profile image
carolen

Interestingly the two negative consequences of taking thyroxine cited by GPs are dismissed : 'Femoral fractures and atrial fibrillation after beginning to take levothyroxine were not more prevalent in individuals who died during follow up'. So what DID they die of then and how do they know it had anything to do with thyroxine? Or am I missing something here?

helvella profile image
helvellaAdministratorThyroid UK in reply to carolen

I noticed that as well - which certainly does require lots of questions to be asked.

SilverAvocado profile image
SilverAvocado in reply to carolen

This is a very brief outline and doesn't mention what they died of.

Possible that the deaths don't support the argument, so haven't been listed!

Hennerton profile image
Hennerton

One of the causes of death was "age". Well, what a surprise! It is a truly ridiculous study and raises doubts about the usefulness of it on every level. However, very pleased to see that we can stop worrying about Atrial fibrillation and osteoporosis. That's a relief then...

SilverAvocado profile image
SilverAvocado in reply to Hennerton

I thought that at first. But actually it says the deaths were associated with age - in other words the older the patient, the more likely they were to die.

It was also associated with lots of the other things that seem completely common sense and obvious - several different long term and deadly pre-existing conditions.

So if a patient was relatively young, and relatively healthy already, they were less likely to die.

Hennerton profile image
Hennerton in reply to SilverAvocado

Yes. That was exactly my point, that the older they were, the more likely to die. Isn't that to be expected? I am confused. I must be missing something and cannot bear to go back and read it again, as once was enough.

SilverAvocado profile image
SilverAvocado in reply to Hennerton

Hehe, I don't think it's worth reading again, as it was just a silly little snippet!

Much better to save our energy for the enormous pile of useful things to read :p

diogenes profile image
diogenesRemembering

In this study as in most others there is a huge statistical error that makes some people "subclinical hypothyroid" because their TSH is above normal but all their other tests are normal. Whether some of these people really are subclinical hypo depends strongly on how you treat the data. What is then the error made by everyone in the field? It is to take a panel of subjects for devising a " normal range" and compare TSH against say FT4, not patient by patient but mixing all results together. For getting the reference range for TSH and FT4 separately, you obtain a graph for each with top and bottom limit lines describing values within which 95% of patients' values sit. If you now make a graph with say TSH on one axis and FT4 on the other, you devise a rectangle within which 95% of subjects will be found. This is called univariate comparison - no pairing of FT4 and TSH in each patient. But in reality for each patient, a given FT4 is produced by a given TSH unique to that individual. So really you have to devise "paired analysis" called bivariate comparison, because univariate simply mixes everything up as if there was no individuality. If you look at "normals" by bivariate analysis, instead of a rectangle, you get an oval-shaped ellipse which again includes 95% of the subjects. The point is however that up to 40% of the subjects who by univariate analysis were classified as subclinical hypothyroid are now within the normal range and are no longr so classified. So knowing this we cannot tell what "subclinical hypothyroiidism" really means if statistical analysis technique has such a powerful bearing on placing subjects in or out of that category. It may well be that people who were really normal by bivariate and abnormal by univariate analysis really do not require, and will suffer from T4 supplementation. But others who are ouside by both measures may benefit. This is why this study is fatally flawed. We've gone into this in some detail in published papers, but the medical field simply isn't up to doing proper statistical analysis.

Danielj1 profile image
Danielj1 in reply to diogenes

My mother is 94 and fit as a fiddle on 125 levo, and I hear your concerns over statistical methods. I simply do not like the product and like the inhalers will do what I can to keep the dose to a minimum.

We all take our views and live with consequences ...

shaws profile image
shawsAdministrator

I do wonder if doctors/geriatrician, or geriatric physician, (a physician who specializes in the care ...) test the patients B12 to make sure it is in the upper part of the range, rather than below or very low.

I have posted this link before:-

youtube.com/watch?v=QqjyAeO...

Aurealis profile image
Aurealis

So the ones who had poorest health were selected for Levo treatment by their Doctors. The ones whose health was a little better had no treatment.

helvella profile image
helvellaAdministratorThyroid UK in reply to Aurealis

I suspect that even getting to the point of having a TSH test represents the person feeling not so well. Then, as you so rightly point out, there is no explanation of how patients were selected to be treated - or not.

And what about those with a TSH lower than 4.2?

SilverAvocado profile image
SilverAvocado

Loads of problems with this article. Two that struck me:

Apsolutely no mention of quality of life, symptoms, or whether any of the treated or control individuals felt rubbish. There's no point in staying alive longer if you're suffering enormously.

This is a report from a presentation at a conference. This is not a peer reviewed complete piece of research, it's interim findings. The research team may decide not to publish at all, change their conclusions in light of deeper analysis, or they may get laughed out of the conference hall.

We actually see an awful lot of research that makes conclusions completely contradictory to patient experience. Sometimes it's obvious what they've done wrong. Other times we can't work it out. These are two completely different approaches to treating thyroid. But you certainly can't pluck out one piece of work and assume everything it says is true and uncontested. Especially without checking its provenance!

SilverAvocado profile image
SilverAvocado in reply to SilverAvocado

This doesn't change the fact that if you feel better on a lower dose it's okay to stay there! All our bodies are very individual, some people are in the 1% or 0.5% at the extreme ends of every distribution. Symptoms are far more important than blood tests.

And of course Levo has the most problems of any hormone replacement. You will be in a lot of company here if you don't like it :p

Danielj1 profile image
Danielj1 in reply to SilverAvocado

Silver avocado , enjoying reading all the feedback. All comments welcome. I will pick up stuff that supports my point of view - if it needs significant challenging then so be it. Let’s hope better research is done then next time around.

SilverAvocado profile image
SilverAvocado in reply to Danielj1

If you do pick out only stuff that supports your point of view, you will of course find a big pile of material.

Whether it will be a help to you or anyone else is a different question ;)

Danielj1 profile image
Danielj1 in reply to SilverAvocado

Do you work in the industry ?

Danielj1 profile image
Danielj1 in reply to Danielj1

I am interested in research on levo good and bad. All I read is negative stuff here so you have to ask the questions. GP does not allow any alternative to levo so any debate is like us sitting down at the pub and debating whether we think drinking water is a good or bad thing.

This whole discussion is entirely moot.

SilverAvocado profile image
SilverAvocado in reply to Danielj1

It sounds like you are saying you're trapped on Levo, and don't have the opportunity to try alternatives?

Do you have symptoms still that are not alleviated by Levo?

If you are getting on fine with Levo, there is no need to try alternatives.

If you are not well, the first step is to post blood tests and ask for advice. You need TSH, freeT4, freeT4, both types of antibodies. If you can get them, also vitamins: Folate, ferritin, Vit D and Vit B12

The first question to ask is whether you're on the optimal dose, and have good vitamin levels.

Only after you've looked at all that do you need to worry about T3 or NDT.

Many are forced to self medicate these things if they can't get good treatment, as much is not available on the NHS. This is the last line option once you have tried everything else.

But perhaps 80% of people do well on Levothyroxine. So it is worth giving it a good trial and seeing if you can get well on Levo alone.

This is the help the forum has to offer! If you don't want this kind of help, then it may not be the right forum for you!

SilverAvocado profile image
SilverAvocado in reply to Danielj1

Hi Danielj1, Have just looked back over your past posts to see if there's anything useful I can say about your results.

But found you've posted an enormous amount over the past few weeks, but haven't posted any thyroid results, or any vitamin or adrenal results either.

It sounds like you are feeling very well at the moment? Or are you still looking for advice on your thyroid treatment? Are you trying decide whether to try T3 or self medication? It's hard to know what you are hoping to get out of your posts?

I hope it's not just to troll and seek arguments! This forum is a fantastic resource for people, that is often a lifeline for those who can't get proper treatment. I am one of those who has had my life changed by the advice of others, so I try to pay it back and help others, too. If you ask for help here you will certainly get it.

Danielj1 profile image
Danielj1 in reply to SilverAvocado

I think this board is a life saver - literally, and have huge passion to give any crumbs of help to those travelling to recovery. I feel I get a lot of encouragement from those I correspond with to keep doing so as they value me showing an interest just as I was blessed by those taking the time to help me.

SilverAvocado profile image
SilverAvocado in reply to Danielj1

I thought you were angry with the forum, so very good news to hear you are getting a lot of benefit!

Danielj1 profile image
Danielj1 in reply to SilverAvocado

The fact that enough hang around means that the pool of retained knowledge is incredible - and the fact that everyone gives their time for free too - if you try other FB type hypo threads they all seem incredibly impersonal - everyone I have communicated with here comes across with a real sense of caring.

If you are interested, my top research priorities are:

-Reducing tpo even further

-Decision over 100% vs 90 % gluten free (current status)

-black cumin seed oil as a permanent or temporary support for t3 conversion

-safe alcohol limits with hashis

-what needs to happen to reduce levo down from 50 to 25

- use of herbs in healing

- use of yoga in healing

- understanding why potassium iodide is less damaging than kelp when taken in a multi vitamin supplement

- understanding role of boron (don’t take it yet)

So you may find me posting on any of the above in the future. At times, this has felt like a full time job!

Williamsmum profile image
Williamsmum

My first thought is if these people have symptoms but are technically well, then it’s not surprising more of them are dying than the control group.

I might be missing something but they didn’t include a group of people with symptoms who were unmedicated? More people in that group might have died than the medicated group...

I am technically euthyroid according to my GP but I am not giving up my Levo!

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