Dropping thyroxine by 12.5 : Hi Just wondered... - Thyroid UK

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Dropping thyroxine by 12.5

haggisplant profile image
34 Replies

Hi

Just wondered if anyone has ever dropped thyroxine by 12.5 (a 25 on alternate days) and what the tsh change was for them?

I know everyone is a bit different but just wondered.

TIA

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haggisplant profile image
haggisplant
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34 Replies
shaws profile image
shawsAdministrator

Why has a reduction been made? Whilst ignoring the TSH do you have symptoms? Are you feeling well?

Have you had your Free T4 and Free T3 tested? I doubt they will be optimum with such a low dosage.

haggisplant profile image
haggisplant in reply to shaws

This is my decision; my tsh was very low and I had challenging over active symptoms. It was up to me to drop 25 or 12.5; I chose 12.5. I’m potentially still experiencing over active symptoms.

I’m one year post partum and still bf; no periods have returned. I’ve had hypothyroidism for 22 years since I was 20; however who knows if there’s any residual function or fluctuations?! I doubt it as I have to go up a lot in pregnancy.

I’m someone who does respond well to thyroxine if one the right dose. It’s getting it right that’s tricky!

bantam12 profile image
bantam12 in reply to haggisplant

You need to look at your T4 and T3 level rather than TSH.

shaws profile image
shawsAdministrator in reply to haggisplant

A low TSH isn't dangerous despite what some doctors seem to believe.

If you've been hypothyroid you cannot become hyperthyroid but of course if someone takes too much hormones they can feel hyper.

I always had severe palpitations when on levothyroxine. I wasn't hyperthyroid but all resolved when some T3 was added to T4 (levo). Several Research Teams have found a combination of T4/T3 suits many.

You need a Full Thyroid Function Test because if your Free T3 is too low, you wont have sufficient T3 circulating to enable your T3 receptor cells to be flooded. T4 is inactive and has to convert to T3 (Active hormone) and sometimes we cannot do so effectively.

haggisplant profile image
haggisplant in reply to shaws

Hi,

Yes the t4 was out of range, too high. Symptoms such as far too much energy after only 3 hours sleep every night, horrible burning feelings and muscle aches, sweats and then crashes.

I feel better after dropping down, just trying to decide if to drop to 100 or fiddle with say 2 25s a week before asking for a blood test.

I may have other symptoms of the peri menopause going on so obviously don’t want to go under.

JGBH profile image
JGBH in reply to shaws

Hi Shaws, could you indicate some credible research papers whereby a combination of T4/T3 is recommended. I am waiting to see an NHS endo and really need to try this combination, so would like to be well prepared when I see him. Thanks if you can help.

Apologies to haggisplant for hijacking her post.

shaws profile image
shawsAdministrator in reply to JGBH

thyroiduk.org/tuk/research/...

JGBH profile image
JGBH in reply to shaws

Thank you.

haggisplant profile image
haggisplant

I only get palpitations when my tsh goes to around 2.

I’ve been hyper before and had no palpitations.

shaws profile image
shawsAdministrator in reply to haggisplant

Do you know what your FT4 and FT3 are when your TSH is around 1?

haggisplant profile image
haggisplant in reply to shaws

No - do you think that’s an idea? I’m wondering if I should just go to 100 and test just to get a baseline. And see symptoms. I do panic though. But in reality around 0.8 would probably be good.

shaws profile image
shawsAdministrator in reply to haggisplant

It is a good idea to have both 'frees' tested , especially FT3. The reason being that it is important that you have a dose of levo to provide both FT4 and FT3 in the upper ranges. T4 is an inactive hormone and as to convert to T3 (the Active hormone) and it is T3 which is needed in the millions of T3 receptor cells to enable us to function as normal.

thyroiduk.org/tuk/testing/i...

Many people if they take levothyroxine, need an optimum dose to convert to T3. A low T3 will make us feel unwell.

haggisplant profile image
haggisplant in reply to shaws

Ive had t3 tested in the past; it’s always good despite different tsh and t4.

haggisplant profile image
haggisplant in reply to haggisplant

If I’m honest, I’d rather go on symptoms which I’m good at spotting. T3 can vary a bit in blood tests.

shaws profile image
shawsAdministrator in reply to haggisplant

I have a once-a-year blood test. I also go by 'how I feel'. T3 blood test isn't the same as a Free T3. This is from TUK:

The thyroid gland has two main functions: the first function is to control metabolism. Metabolism is the rate at which all the chemistry of the body works. The second function is to control growth in early life.

The normal thyroid produces a number of different hormones. The main hormones are called thyroxine (T4) and triiodothyronine (T3). The thyroid produces approximately 80% T4 and 20% T3. The thyroid also produces T2 and T1 in very small amounts but their role is not yet well understood.

T4 is generally considered to be a pro-hormone because it is inactive and only becomes active when converted to T3. However, some researchers believe that T4 does, in fact, have a function.

T3 is an active hormone and does all the work of regulating the body's metabolism.

The tissues are unable to use T4, so an enzyme called 5'-deiodinase converts it to T3. This conversion takes place in the body's cells and tissues, mainly in the liver. Problems with the liver can upset/affect the body's conversion of T4 to T3 and can cause problems for the thyroid.

The thyroid needs iodine to make thyroid hormone. Iodine is found in fish, shellfish, cereals and grains and vegetables (although levels vary depending on the amount of iodine in the soil where the plants are grown). There is also iodine in cow's milk.

Your body also needs different amino acids to make thyroid hormone (amino acids are the building blocks of protein), especially the amino acid, Tyrosine. Tyrosine is found in soy, chicken, turkey, fish, peanuts, almonds, avocados, bananas, milk, cheese, yoghurt, cottage cheese, lima beans, pumpkin seeds, and sesame seeds.

Selenium is needed for conversion of T4 to T3. If your diet does not contain enough selenium, you may have poor conversion of T4 to T3. Selenium can be found in meat, fish and nuts.

Thyroid problems often run in families and can happen at any age. Things can go wrong with the thyroid in two ways:

thyroiduk.org.uk/tuk/about_...

haggisplant profile image
haggisplant in reply to shaws

Oh yes I understand all that, thank you. And also that t3 varies during the day, has a short half life and conversion can fluctuate due to other reasons, and that the body can regulate it to a certain extent through feed back loops via the several enzymes involved in conversion. I’ve had it tested by the nhs twice and genuinely didn’t find it useful.

shaws profile image
shawsAdministrator in reply to haggisplant

T3 is absorbed into the T3 receptor cells quickly but then its work begins by sending out 'waves' and that one dose can last between one to three days.

haggisplant profile image
haggisplant

I’ve thought about a combo of t3 and t4 but if I’m honest I have a very chaotic lifestyle at the moment with young children and work and life and also have been very well on t4 in the past as long as it’s the right level and I take it consistently.

Weight is never an issue for me; I loose weight through muscle mass when hypo so cant use that as a measure. I’m hypermobile and so strength is important.

MaisieGray profile image
MaisieGray

"just trying to decide if to drop to 100 or fiddle with say 2 25s a week before asking for a blood test."

I don't know if there is an implied comma after '25s' or after 'week' and it changes the question you are asking; but definitely don't have a blood test within a week of altering your meds, you should wait 6 weeks after any dose change.

Also can't make informed/relevant dosing decisions based on the TSH, you need to know the level of both your FT4 and FT3.

haggisplant profile image
haggisplant in reply to MaisieGray

I’ve got it written down somewhere but t4 was roughly 25 if I remember correctly. But I do very much include symptoms, which can be confusing is border hyper actually, and the factors of chaotic nights with small children can confuse normal tiredness with hormone induced tiredness.

An nhs consultant told me it’s ok to be very suppressed before so I know that’s ok as are the gps. Except I’ve had a range of odd symptoms recently. There’s definitely a ‘sweet spot’ of balance though.

haggisplant profile image
haggisplant in reply to haggisplant

I meant two 125s a week, the rest 100.

helvella profile image
helvellaAdministratorThyroid UK

At one point, I was on 100 micrograms of levothyroxine a day. Feeling that to be too low, I increased to 125. That was too high. I dropped to 100/125 alternate days. That felt the right amount but I do not like alternating doses. So I took 112.5 a day and felt, somehow, more balanced and better.

More recently, I increased to 125 every day.

That is now twice I have adjusted by 12.5 a day. I am convinced it can be right for some of us to make very small dose changes.

Look at it another way, how do you think you'd feel taking an extra 87.5 once a week? Instead of looking like a very small change, it starts to appear a more substantial change - just because it is a bigger number! :-) Then take the next step and think of 175 extra once a week - because that is what a 25 dose change gives you in terms of total intake.

haggisplant profile image
haggisplant in reply to helvella

Yes I had this once; I was also on betablockers which may have meant the reason for the needed change. 125/150 alternate days. But at that was a good 10 years ago or more and I wasn’t recording at that point, annoyingly. But I was on beta blockers too which alter conversion so prob not a good comparison.

Apologies I should have given more info. I’m managing kids!

helvella profile image
helvellaAdministratorThyroid UK in reply to haggisplant

No problem - I think it is very important to post from time to time that small changes can be significant - certainly smaller than 25 a day.

haggisplant profile image
haggisplant in reply to haggisplant

I may try the straight 112.5 a day then. It’s just tricky splitting tablets and I don’t trust teva 12.5 with a barge pole.

helvella profile image
helvellaAdministratorThyroid UK in reply to haggisplant

My only experience of Teva was their 12.5 tablets - and I did not like them at all.

They are also relatively expensive.

MaisieGray profile image
MaisieGray in reply to haggisplant

I have two pill cutters, both the absolute cheapest I could find (one from ASDA and one from Lloyds I think) and they both cut perfectly.

MaisieGray profile image
MaisieGray in reply to haggisplant

From studies, not every beta blocker is implicated, but propranolol is one of the ones that is.

haggisplant profile image
haggisplant in reply to MaisieGray

Yes it was propanol 80 slow release. Lovely stuff!

MaisieGray profile image
MaisieGray in reply to haggisplant

I found 80 mg slow release propranolol fantastic at addressing my essential tremor symptoms but because I was taking it with 3 different meds for hypertension, the totality of them intermittently caused my HR to drop too low so I've been on 4 x 10 ever since, which isn't quite enough. What is worrying though, I arranged to see a neuro to specifically discuss replacing them with something else because of their negative T3/RT3 effect, especially as I have tested homozygous positive for a DIO2 SNP; and guess what, he knew nothing at all about it! He said he'd have to check it out and would write to me - and no surprise, his letter said there is no contraindication with levothyroxine and I should continue taking the propranolol ........ You couldn't make it up.

haggisplant profile image
haggisplant in reply to MaisieGray

That’s a hoot - it’s mentioned in the thyroxine leaflet and given to hyper patients!!

MaisieGray profile image
MaisieGray in reply to haggisplant

Do you happen to have a link to the PIL that mentions propranolol specifically, or which manufacturer? I've just googled for instance the PIL for Activis 50 mcg Levo and unfortunately it refers to "beta blockers such as atenolol and

sotalol", so I'd prefer to have it explicitly reference propranolol if I could, if I'm going to challenge him. No problem, if you don't.

haggisplant profile image
haggisplant in reply to MaisieGray

I haven’t checked the leaflets (and it’s possible I haven’t remembered correctly) but this paper explains it. I’m wondering if it’s in my Toft BMA thyroid disorders book as I think that’s where I read about sertraline too.

ncbi.nlm.nih.gov/pubmed/168...

haggisplant profile image
haggisplant

I’ll get a pill cutter, haven’t tried before

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