TSH dose reduced too much? Osteoporosis problem - Thyroid UK

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TSH dose reduced too much? Osteoporosis problem

notdoingwell
notdoingwell

I went back to my endo 24/02/2020 with the results of my blood tests as follows:

10/02/2020

T3 3,4 (3.1 – 6.7) T4 14,27 (12 – 21.9) TSH 0,96 (0.27 – 4.20)

I was taking 75mg / 50mg Levothyroxine on alternate days, an average of 62.5 mg with half Cynomel (T3)25mg.

I had thought I would increase my Levothyroxine dose to push my results higher in the ranges, feeling a little hypo – tired, putting on weight, brain fog etc but not as bad as previously. I thought I had understood from all of you that keeping TSH suppressed isn’t a problem.

When I saw my Endo, she spent ages explaining that because of my osteoporosis I need to keep TSH high as it’s bad for bones to have low TSH, and I need to stop T3 – Cynomel too. I said I’d prefer to continue with the Cynomel for the moment and she agreed albeit reluctantly.

Unfortunately, I can’t understand my prescription for Levothyroxine: 50mg/other day and half 25mg every day, which means 12.5mg and then 62.5mg the next. This means an average of 37.5mg.

So, what do you think? It seems like a big difference to me and I’m now thinking of taking 50mg.

Any input would be most welcome!

(BTW Vitamins all ok but Ferritin high)

SeasideSusie shaws Catseyes235 silverfox7 SlowDragon helvella greygoose

9 Replies
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SlowDragon
SlowDragonAdministrator

You need a new endocrinologist

Having LOW Ft3 or HIGH Ft3 causes osteoporosis....it has absolutely nothing to do with low TSH

When taking almost any dose of T3 the TSH is almost always suppressed

Osteoporosis

thyroidpatients.ca/2018/07/...

On levothyroxine and especially on Levothyroxine plus T3 the most important results are Ft4 and Ft3

Important to regularly test vitamin D, folate, ferritin and B12 too

Suggest you get vitamins tested

Both Ft3 and Ft4 on low side, suggest you increase levothyroxine first, as you intended, up to 75mcg per day

Never increase both

Retest in 6-8 weeks

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last 1/2 or 1/3rd of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

SeasideSusie
SeasideSusieAdministrator

notdoingwell

This is how I understand your post.

On 10.2.20 your blood test showed the following results on 62.5mcg daily average Levo plus 12.5mcg T3

TSH: 0.96 (0.27 – 4.20)

FT4: 14.27 (12 – 21.9) = 22.93% through range

FT3: 3.4 (3.1 – 6.7) = 8.33% through range

Those results show undermedication and your symptoms bear this out.

When on combination hormone replacement, it's an individual thing where we need our levels. You may be fine with a low FT4 (many people are, some need it higher) but it's FT3 that is the most important test and most people find they need this in the upper part of it's range. Yours is extremely low at 8.33%.

I thought I had understood from all of you that keeping TSH suppressed isn’t a problem.

That is correct. Doctors like to frighten us into thinking that a suppressed TSH will cause osteoporosis and atrial fibrilation. Apparently this is not so, I don't have time at the moment to seek out papers but from the Related Posts listed at the side of the page (on a PC, may be at the bottom if on another device) I have found a reply by Diogenes in this post healthunlocked.com/thyroidu... that says:

The real problem here is that all trials published, either on acceptability of T4/T3 combination over T4 only, or on likelihood of osteoporosis and atrial fibrillation with low or undetectable TSH have a fatal flaw which makes their conclusions very questionable. Basically, and rather ironically, it is because the studies are done using randomised clinical trials (RCTs). This means that subjects are taken at random for the study. But this assumes that the average response applies equally to everyone. So then you get an overall estimate of the chance of OP or AF. The problem is that subgroups exist mixed in with the majority, whose responses and risks could be quite different from the norm. For example, it could equally be that there are some people for whom low TSH isn't a desirable thing, and these swamp out the subgroup of people for which it doesn't matter. The trials basically fail to recognise the individuality of patients and the fact that the same FT4, FT3 and TSH values mean very different things to different people. It's the "shoehorn" approach of forcing everyone into a single class, when there actually are very many subclasses. Trials should divide patients into different groups and analyse them separately.

I'm sure he wont mind me quoting him, he is a scientist and thyroid researcher and an advisor to thyroid UK - Dr John Midgely.

However, you say that you have a diagnosis of osteoporosis so I can't comment on that I'm afraid.

From what you say here:

Unfortunately, I can’t understand my prescription for Levothyroxine: 50mg/other day and half 25mg every day, which means 12.5mg and then 62.5mg the next. This means an average of 37.5mg.

Do you mean that she wants you to take 12.5mcg/62.5mcg Levo alternate days? What's happened to the T3? Or is that 12.5mcg T3 every day with 50mcg Levo alternate days?

Thanks for your answer SeasideSusie - just to clarify - the Cynomel 1/2 tablet is daily. Levothyroxine is 50mg every other day

half 25mg every day (12.5mg)

So it works out at 12.5mg and then 62.5mg the next day, which seems like a big difference, as well as being ultra-fiddly to manage, especially as I prepare my dose to take as soon as I wake so I can put milk in my tea an hour later!

Since my post I've started taking 75mg Thyroxine and 12.5mg Cynomel daily - and I'm feeling good!

SeasideSusie
SeasideSusieAdministrator in reply to notdoingwell

Since my post I've started taking 75mg Thyroxine and 12.5mg Cynomel daily - and I'm feeling good!

That sounds sensible and I'm glad you've felt an improvement. It might be an idea to retest 6-8 weeks after increasing your dose to see how your levels have altered, if you feel good on those doses at that time that may be your optimal dose.

The alleged link between osteoporosis and low TSH is very open to challenge.

Two recent papers might be of interest:

1) Papaleontiou M, Banerjee M, Reyes-Gastelum D et al. Risk of osteoporosis and fractures in patients with thyroid cancer: a case-control study in US Veterans.

The Oncologist 2019;24:1166-1173. doi:10.1634/theoncologist.2019-0234

2) KIM EH, Jeon YK, Pak K, Kim IJ et al. Effects of thyrotropin (TSH) suppression on bone health in menopausal women with total thyroidectomy.

J Bone Metab 2019;26:31 doi:10.11005/jbm.2019.26.1.31

The first paper showed that the effect of low TSH on bone health was small compared with influences such as female gender and older age and the lower TSH was only associated with osteoporosis but NOT frequency of bone fracture.

The second paper on postmenopausal women with thyroid carcinoma showed that bone scores were lower compared with controls, but did not change in 4 years of TSH suppression by T4 treatment, and nor did bone mineral density by DEXA scanning.

Other papers eg by Angela Leung have shown that with suppressed TSH, the actual incidence of osteoporosis rose only as 1 extra fracture per 1000 patient years,

The extra risk of OP over that caused by menopausal influences is tiny.

humanbean
humanbean in reply to diogenes

Links to the two papers you mention :

1) Risk of osteoporosis and fractures in patients with thyroid cancer: a case-control study in US Veterans.

HTML version : doi.org/10.1634/theoncologi...

PDF version : theoncologist.onlinelibrary...

2) Effects of thyrotropin (TSH) suppression on bone health in menopausal women with total thyroidectomy.

HTML version : ncbi.nlm.nih.gov/pmc/articl...

PDF version : ncbi.nlm.nih.gov/pmc/articl...

I agree with all the advice you have been offered so far. I take T3, T4, have a suppressed TSH, have OP and I am reversing it through a protocol of diet, exercise and supplements. I have read some of the research implicating an association between a suppressed TSH and the development of OP. My query is a lack of control of variables in studies such as age of onset of OP, genetic links, poor diet, onset of thyroid disease and the corresponding onset of OP, if any. I have argued the toss with my Endo who is involved in research himself and has treated thousands of OP patients. He eventually backed down on his stance, agreeing with me. Having read the print off so much OP information I am convinced the cause of OP is extremely complex and a definitive causative link between this disease and a suppressed TSH is far from proven. If I had followed the advice you have been given by your Endo there would have been no chance of including exercise in my OP fighting regime as I simply would not have had the energy.

I cannot recall where I read this but there was a school of thought that OP is a bit of a ‘manufactured’ condition and that there is insufficient allowance when testing for natural decline as one ages. Also, bone density does not equal bone strength. One day my memory will work again.

Thank you everybody!

I'm now taking supplements of Magnesium, Selenium, Zinc daily.

I've started taking 75mg Thyroxine and 12.5mg Cynomel daily - and I'm feeling good!

I've got an appointment at the hospital with a rhumatologist to see about my osteoporosis and I've got T3, T4, TSH blood tests to come in about 6 weeks, so we'll see where it goes.

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