How to reduce medication: My TSH is not... - Thyroid UK

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How to reduce medication

ukap profile image
ukap
24 Replies

My TSH is not "detectable" at 0.01(range 0.40-4.50)

As I am post menopausal i have to be concerned about bone loss so would like to adjust my meds so my TSH raises. On my current dose I do not have any hyper symptoms & feel pretty good. My hair and nails are improving & I have more energy but i have to look at long term use and issues I might have down the line.

Current labs read T4 free 1.4 (range 0.8-1.8) T3 free 3.5 (range 2.3-4.2) TG less than 1

TPO 1 (range less than 9)

Currently taking 100m thyroxin plus 1 grain 60m NDT.

Could you tell me how to safely taper down from these and find a lower dose that still works?

I am in the USA with no insurance so have no option other than self medicating. Paying for my own blood work out of pocket.

Other labs show Vit D 68 (range 30-100)

Ferritin 78 (range 10-232) Iron total 59 (range 45-160) saturation 22 (range 11-50)

Iron binding 264 (range 250-450) tranferrin 256 (188-341)

Suggestions and recommendations would be appreciated.

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ukap
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24 Replies
RockyPath profile image
RockyPath

That certainly is a lot of hormone. Since it has a half life of 9 days, and will persist in your body at some level for up to a month if you cease completely, you could try cutting a 100 tablet in half and on two days of each week take the half instead of a whole tablet. Continue with the NDT as usual That substitution of 1/2 on two days would represent approximately a 10% reduction in your levothyroxine intake.

That would probably be an adjustment where you could go for several weeks or a month and see how you feel. You'll have to pay close attention to all of the details of energy, sleep, etc. If you don't notice anything after six weeks, you could then expand the process by making another reduction, substituting 1/2 of a 100 on two more days when you were taking 100 a day. By this point you might notice something.

The reason subclinical hypothyroidism isn't treated is because in clinical management they are consciously making a choice between the risks of fracture from bone loss, and the attendant comorbidities (ending up in a decline into frailty and incapacity) with bad nails, hair loss, and not having quite as much energy as before.

Sure would be nice to have insurance, wouldn't it? Our friends in the UK, with their "evil socialism," have it pretty good, getting the care they need and free medicines. Did you know that, if they take a taxi to the hospital, the first thing that happens is they get reimbursed at the check-in for the taxi expense? Wouldn't that be nice.

MaisieGray profile image
MaisieGray in reply to RockyPath

I disagree that "it's a lot of hormone". 100 mcg Levo plus 1 grain of NDT is a total of 138 mcg T4 and 9 mcg T3. Until last year, I had been on 125 mcg T4 and 20 mcg T3 for about 11 years, which as a total amount, is a bigger dose, and which kept my FT4 and FT3 within their respective ranges, as is the case for the OP. She isn't over medicated.

Where on earth do you get the bizarre idea that we can all turn up at the hospital in a taxi and be recompensed for its cost? Certain low income persons who have entitlement to specific statutory benefits may be eligible to have their travel costs met, where they have been referred for treatment by their primary care providers, but they have to travel by the cheapest suitable mode of transport for their circumstances, which in most cases will be public transport.

And my health treatment and care isn't free. It is free at the point of delivery, which is entirely different, because as someone that has worked all her adult life, I have paid tax and national insurance from start to finish, to help fund my NHS treatment.

cjrsquared profile image
cjrsquared in reply to RockyPath

As someone who works in the nhs I’m laughing at your completely unrealistic view, the reality is patients on trolleys in the corridor, with ambulances queuing outside a and e, elderly patients sent home at 10pm at night to cold empty houses, patients don’t get travel reimbursed and waiting lists are getting longer. Sadly both primary and secondary care are broken

RockyPath profile image
RockyPath in reply to cjrsquared

We have all of that here, too, but we're left with crushing debt, which is causing the suicide rate to spike, especially, but not limited to, people over 50.

Angel_of_the_North profile image
Angel_of_the_North in reply to RockyPath

Well here we don't get the option not to pay, We have the money taken out of our income whether we like it or use it, or not. I have to pay on top of that for my private treatment. If I have a referral to hospital I have to get there on my own, and pay for transport, or if I use my own transport, I have to pay for parking at a high rate. I don't have the option not to have insurance. I don't really see the difference , except that NHS GPs seem to have to toe the line more than US doctors (not prescribe T3 or NDT, for example).

FancyPants54 profile image
FancyPants54 in reply to RockyPath

We certainly don't get transport reimbursed! The cost of hospital car parks is widely inflated and costs a lot, plus there's never enough spaces. We get slap-dash, haphazard treatment for some things - thyroid amongst them. Yes it's better than what you have, but you are dreaming if you think it's as good as you indicated here!

Hellonwheels profile image
Hellonwheels in reply to RockyPath

Wow. Just WOW... You really have no idea how this all works, do you?? Have you not read enough on this forum to realize that our friends in the UK DO PAY for their "free" medical and prescriptions? And also, maybe read up a bit more on how they STRUGGLE to get properly treated, ESPECIALLY for thyroid disease/dysfunction... Where we in the U.S. may have PAY at point of service, UK folks PAY their whole working lives, and still tend to get screwed one way or another---several on here have to buy their own meds and bloodwork, pay for private doctors, order from other countries in HOPES that they've found reputable suppliers who won't rip them off. You have some nerve coming on here to spew political nonsense and act like you know what's going on in the world. If you're going to preach, know what you're preaching first, please.

shaws profile image
shawsAdministrator

If we're on an optimum dose, some of us will have a very low TSH and some need it to be suppressed to feel well. Many people begin to feel worse if their dose is adjusted when they feel well on that particular dose. I am afraid the TSH fiasco can harm a patient if it is insisted that the dose is adjusted due to the TSH alone without testing FT4 and FT3 particularly if the patient is well.

Endocrinologists appear to make the same statement, i.e. very low TSH will cause osteoporosis etc.or cause hyperthyroidism. If we're hypo we cannot become hyper but of course if we took too much of any thyroid hormones, we'd not feel too well.

I believe that some hypothyriod people, especially if they've had thyroid cancer have to have a very low or suppressed TSH but I doubt they come to harm.

thyca.org/pap-fol/more/tsh-...

thyroiduk.org.uk/tuk/thyroi...

hormonerestoration.com/

I think many doctors and endocrinologists may assume that a suppressed TSH will cause problems but I'm sure that's not the case.

Excerpt from 'Hormone Restoration:-

" 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-- when you have the blood drawn in the morning prior to your daily dose. 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.

The above is from Dr Lindner who is an expert and its no wonder he cannot take on any new patients.

SlowDragon profile image
SlowDragonAdministrator

Anyone taking any form of T3 in Liothyronine or NDT is likely to have suppressed TSH

As long as FT4 and FT3 are both within range and no hyperthyroid symptoms you are unlikely over medicated

Few links

jeffreydachmd.com/2016/10/a...

Suppressed TSH not a problem

heart.bmj.com/content/84/4/455

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.

Long term study of T3 or NDT - no adverse issues

ncbi.nlm.nih.gov/pubmed/298...

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

healthunlocked.com/thyroidu...

sciencedaily.com/releases/2...

High FT4 cause of AF

academic.oup.com/jcem/artic...

Not osteoporosis

ncbi.nlm.nih.gov/pubmed/825...

Osteoporosis- hypothyroid with low FT4 and FT3

tiredthyroid.com/blog/2012/...

Rapunzel profile image
Rapunzel

Precisely what MaisieGray shaws and SlowDragon have said. Be careful with this overmedication malarkey. The 'research' many medics are referring to, in suggesting that you are more likely to suffer osteoporosis if your TSH is suppressed, was carried out years ago, on very old, very frail and mostly bedbound dudes, to the best of my recall; humanbean and helvella are very wise counsel in the 'research' department and I hope that they can reassure you. A much missed poster, very quiet these days, answered my post about this very same thing here

-healthunlocked.com/thyroidu...

If it's a medic who has suggested this, ask him/her for the paper being referred to. It's likely to be this crock. My TSH is very low and I'm taking a deal more hormone than you. Ask me if I'm bothered.

...bad nails, hair loss, and not having quite as much energy as before... Really? That's the top and bottom of hypothyroidism, is it? I freaking wish. This thyroiduk.org.uk/tuk/about_... is nearer the mark.

And so long as I'm agreeing with some forum members and not others, we don't like political grandstanding. People can be evil :disappointingly all too often; the governance of a country is most often executed in the hope that it will benefit the majority.

And taxis? In the UK they are paid for from the purses of those who hail them. It's Britain, not the land of the freaking unicorns. Rant over

Be careful what you take away and here's hoping for your continuing health. A Dexa scan doesn't cost a lot here and perhaps you can arrange for one without too much expense where you are. Good luck ;)

SlowDragon profile image
SlowDragonAdministrator

You might find this interesting too

We are always told T3 is so "dangerous" for thyroid patients...... yet here they are in new research giving T3 to heart attack patients!

laboratoryequipment.com/new...

shaws profile image
shawsAdministrator in reply to SlowDragon

We know the 'experts' are unaware that T3 calms the heart and the brain and heart have the most T3 receptor cells. If T4 doesn't convert to sufficient T3 they don't understand at all the difference between active or inactive thyroid hormones.

Shubbaz profile image
Shubbaz

I’ve read that taking NDT and synthetic t4 together can lead to Reverse t3 problems.

Shubbaz profile image
Shubbaz in reply to Shubbaz

No. 3 in this article.

stopthethyroidmadness.com/2...

MaisieGray profile image
MaisieGray in reply to Shubbaz

I'm no fan of STTM but that assertion of Janie Bowater's is particularly misleading. An excess of T4 may lead to an increase in RT3, but that's going to happen however you ingest the exogenous T4, and it's not specific to adding T4 to NDT. If you are taking a lower dose of NDT than you need, and add synthetic T4 to it, that doesn't of itself, make the total amount of T4 excessive. It is the totality of T4 ingested, not the fact of combining synthetic T4 and NDT that may be problematic.

NWA6 profile image
NWA6

You feel better than ever and yet you are going to self sabotage that?? Don’t do it 😱 Look at your FT4/3 results. Both within range. Note those numbers and how good you felt and if other blood tests falter from that they adjust your meds up or down to return to those numbers (if you feel more confident about self medicating when you have numbers to look at.

I am not medically trained but those numbers along with your well symptoms look good 😘

My TSH on 2 x NDT a day is 0.005 I have no bone loss and I am 72 years old with no thyroid, no heart problems either. You are taking a lot of medication are you a man?

Why not take just NDT instead it could work out well for you.

You are taking 100 Levo plus 39 in the NDT = 139 T4 plus 9 T3. This is a lot of T4.

helvella profile image
helvellaAdministratorThyroid UK in reply to

As I am post menopausal

I would have thought, unlikely to be a man.

NWA6 profile image
NWA6 in reply to helvella

😂😂😂 don’t assume gender!

Hellonwheels profile image
Hellonwheels in reply to NWA6

LOLOLOLOLOLOL... and let's put tampon dispensers in the men's room!!!

MaisieGray profile image
MaisieGray in reply to

But it isn't a lot of medication. Estimating T3 as the equivalent of 4 x T3, that's around 174 mcg Levo, and CKS/NICE states for Levothyroxine, "The usual maintenance dose is 100–200 micrograms once daily."

NWA6 profile image
NWA6 in reply to MaisieGray

Agreed, doesn’t sound like a lot to me either.

ukap profile image
ukap

No...not a man! middle-age post menopausal woman actually & weigh128lbs. This is the reason for asking because bone loss is important at my age.

I was asking for advice to taper dose down. Not going to sabotage my current progress but just tweak slightly to see if I can do just as well but with a lower dose.

Suggestions on how to drop down slowly would be helpful.

helvella profile image
helvellaAdministratorThyroid UK in reply to ukap

Just possibly worth a look at this document I put together:

dropbox.com/s/sllu21khbeyth...

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