Even with patients on T4 supposedly "properly treated", quality of life falls with increasing TSH

[diogenes]

This paper links TSH to QoL with patients on T4 and supposedly carefully monitored (according to the TSH-is-all rules I think). Nevertheless it should be possible to convince doctors that the higher the TSH the poorer the outlook forthe patient.

Endocrine doi.org/10.1007/s12020-020-...

Correlation between TSH levels and quality of life among subjects with well-controlled primary hypothyroidism

Marta Morón-Díaz. Pedro Saavedra. María P. Alberiche-Ruano3, Carlos A. Rodríguez-Pérez, Yaiza López-Plasencia, Dunia Marrero-Arencibia, Ana M. González-Lleó, Mauro Boronat

It has been suggested that increasing levothyroxine dose to lower TSH levels within the normal laboratory range might be a therapeutic option for patients with apparently well-controlled primary hypothyroidism who are dissatisfied with their treatment and complain of physical or psychological symptoms. This study assessed whether there is a relationship between TSH levels and health-related quality of life (HRQoL) among subjects with adequately treated hypothyroidism

.Methods HRQoL was measured with the specific thyroid disease ThyPRO-39 questionnaire in 218 consecutive patients with primary hypothyroidism of any cause attending an Endocrinology Department in a single center. Patients had TSH values within the normal laboratory range on a blood test performed not before than 6 weeks prior to study participation, but they were not aware of their lab results. The association between TSH values and the different ThyPRO-39 scales was analyzed by means of multiple regression models, both linear and additive, in which, in addition to TSH, a wide set of clinical and sociodemographic variables potentially related to HRQoL were also considered.

Results TSH levels and the use of anxiolytic and antidepressant drugs were the only variables that showed a positive linear correlation with the ThyPRO-39 composite scale in the multivariate regression analysis, indicating greater impairment inHRQoL with increasing TSH values. TSH was also independently correlated to scores of scales dealing on tiredness and emotional

susceptibility.ConclusionsIn patients with primary hypothyroidism, higher TSH values, even within the normal reference range, areassociated with greater deterioration of HRQoL

[Musicmonkey]

Thanks for sharing diogenes More grist to the mill.

[helvella Administrator]

Thank you, diogenes.

Has anyone managed to find the actual ThyPRO-39 questionnaire online?

I'd like to know much more about it as more papers come out seeming to support, even promote, its use.

[tattybogle in reply to helvella]

I do remember that i was much more impressed with Thypro than the majority of previously used QOL tools, having looked at the previous ones in a critical manner in relation to CFS/Me studies and outcomes. However i can't now remember how i came to this conclusion about ~Thypro, if i read the actual thing or just read 'about' it.

But i have got the impression it allows for a much more realistic impression of how you're doing than the older tools.

I'll have a look in what i laughingly call my 'filing system'...... don't hold your breath, my filing is abysmal.....

[tattybogle in reply to tattybogle]

please ignore my earlier reply , it seems my memory is as abysmal as my filing ... i can only find these 2 in my list of 'saved it cos it might come in handy' and there's nothing about thyrpro in the one with all the detail. ncbi.nlm.nih.gov/pmc/articl...

pubmed.ncbi.nlm.nih.gov/270...

[TSH110 in reply to helvella]

I think this is a Polish version but it seems to be in English :

journals.viamedica.pl/endok...

And it’s all here in English in Appendix 1:

yumpu.com/en/document/read/...

[Hidden]

Thank you for this. After a two year fight with doctor to increase my Levo because of increased symptoms my TSH is very low and I am feeling almost back to my normal self. I am now being nagged because they feel my TSH is too low (it is under 1) DESPITE me assuring them that I feel well, and now they want to reduce it. This ‘computer say no’ effect is not a joke anymore!

[shaws Administrator in reply to Hidden]

TSH is from the pituitary gland and I doubt many doctors are aware of this fact.

We feel much better when our TSH is 1 or lower but considering that I feel few doctors know very much about hypothyroidism altogether, except keeping the TSH in range whilst ignoring the FT4 and FT3 completely. Both of which should be in the upper part of the ranges.

They 'assume' that if your TSH is very low that we're becoming hyperthyroid but that isn't the case.

If you feel well, do not allow them to adjust your dose to try to 'fit' your results into a range.

I think it would be better if we were treated like the original patients who had hypothyroidism. They were diagnosed upon clinical symptoms alone and given a trial of NDT with small increases until symptoms resolved. From then on people's lives were saved).

No blood tests at that time.

The NHS would save millions of £££s and patients would be happy and content.

Nowadays those who make the rules in UK reduced our options by removing all NDTs that saved lives from 1892 onwards and then stated that from now on Endocrinologists would have to replace it with T3 if patients weren't improving on.

T3 was then prohibitedbut at what cost then to hypo patients who were told that only levo was available.

The professionals fail not to understand that the TSH is NOT a thyroid hormone.

This an extract from a professional doctor that I'm sure we wish we could consult:

"Unfortunately, the medical profession has clung to the misleading TSH test since the some physicians decided to do so in the 1970s. Doctors are taught that hypothyroidism is a high TSH--when it is, in fact, the state of inadequate T3-effect in some or all tissues. They are taught wrong. TSH not a thyroid hormone and is not an appropriate guide for either the diagnosis or treatment of hypothyroidism. The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of inactive levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. IF you continue to suffer from the symptoms of hypothyroidism, you have the right to demand that your physician give you more effective T4/T3

(inactive/active) thyroid replacement therapy. Your physician can either add sufficient T3 (10 to 20mcgs) to your T4 dose, or lower your T4 dose while adding the T3. The most convenient form of T4/T3 therapy, with a 4:1 ratio, is natural desiccated thyroid (NDT-- Armour, NP Thyroid, Nature-Throid). If you have persistent symptoms, ask your physician change you to NDT and adjust the dose to keep the TSH at the bottom of its range. The physician cannot object. This may be sufficient treatment, but IF you continue to have persisting hypothyroid symptoms, and no hyperthyroid symptoms, ask your physician to increase the dose to see if your symptoms will improve, even if the TSH becomes low or suppressed. You can prove to your physician that you're not hyperthyroid by the facts that you have no symptoms of hyperthyroidism and your free T4 and free T3 levels are normal in the morning, prior to your daily dose. They may even be below the middle of their ranges. Your free T3 will be high for several hours after your morning T4/T3 dose, but this is normal with this therapy and produces no problems.

You should insist that testing be done prior to your daily dose, as recommended by professional guidelines. If you have central hypothyroidism, the TSH will necessarily be low or completely suppressed on T4/T3 therapy. In all cases, your physician must treat you according to your signs and symptoms first, and the free T4 and free T3 levels second.

hormonerestoration.com/

[Hidden in reply to shaws]

Thank you that’s good advice and I will stand firm!

[Gingernut44]

Thanks for posting. The link didn’t work so couldn’t read the whole paper

[helvella Administrator in reply to Gingernut44]

These DOI links often take days or weeks to work. It is because of the way they are set up and intended to work forever - requires some extra work.

Try again next week?

Levo50

[shaws Administrator in reply to Gingernut44]

I was able to open the link. I had to press two separate clicks.

[Levo50]

Very interested to read this article but the link didn’t work for me?

[shaws Administrator in reply to Levo50]

Press twice (2 separate clicks)

[jimh111]

Full paper here scihub.wikicn.top/10.1007/s... . Not had time to read it but superficial glance suggests only a weak association between TSH and tiredness.

This is similar to many other studies that tend to show little correlation between TSH and symptoms in levothyroxine treated patients with the exception that some patients benefit from bringing their TSH down to below 2.0.

I think this is another study that confirms TSH is a poor marker for thyroid status, particularly in patients on levothyroxine monotherapy. Just because TSH is normal it doesn't mean the patient is.

[Gingernut44 in reply to jimh111]

shaws jimh111 helvella humanbean Many thanks, will try to read later

[humanbean]

Gingernut44 Levo50

You can find the paper here - abstract only :

pubmed.ncbi.nlm.nih.gov/328...

[humanbean in reply to humanbean]

I've found the whole paper here :

sci-hub.scihubtw.tw/10.1007...

[LindaC]

Thank you diogenes 🍀 much appreciated.

[humanbean]

Even with patients on T4 supposedly "properly treated", quality of life falls with increasing TSH

Unfortunately for patients, doctors no longer appear to care how well patients feel. Biochemistry trumps all symptoms, because patients with symptoms that don't resolve are assumed to be attention-seeking, drug-seeking liars, particularly the female ones.

[56jennywren]

Thank you for drawing this to our attention diogenes.

What is worse is that in the UK they make us wait until we reach 10 for treatment. Mine was 9.2 couldn't tolerate levo and was referred to hospital, where registrar didn't want to treat me. I told him other countries treat at a much lower level. He wrote that on my notes and also that I had brought a page of written down symptoms. He did however after much umm..ing and ah..ing prescribe T3 which was wonderful and I could feel my symptoms resolving. The consultant then changed me to NDT and I have continued to improve.

On another thread you taught me how to search for statistics for thyroid and osteoporosis so thank you. It led me to the NICE guidelines / recommendations for osteoporosis and fragility fractures so again thank you.