Low dose levythroxine : Hi just wondering does... - Thyroid UK

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Low dose levythroxine

MMAndrea52 profile image
18 Replies

Hi just wondering does any one do well on a low dose of levythroxine with no thyroid?

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MMAndrea52 profile image
MMAndrea52
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18 Replies
greygoose profile image
greygoose

What do you call a 'low dose'?

MMAndrea52 profile image
MMAndrea52 in reply togreygoose

75mcg levythroxine

greygoose profile image
greygoose in reply toMMAndrea52

Well, not me, that's for certain! I take 75 mcg T3!

SlowDragon profile image
SlowDragonAdministrator

It's important to give each dose long enough to stabilise on it, at least 6-8 weeks on CONSTANT unchanging dose before testing full Thyroid and vitamins

Only increasing slowly in 25mcg steps, retesting 6-8 weeks, (or longer) after each dose increase. (Waiting longer if reduced dose - 10-12 weeks)

Low vitamins are very common and need to be optimal too

What dose of Levothyroxine are you currently taking?

How long have you been on this dose?

How about vitamin levels?

What supplements do you currently take?

For full Thyroid evaluation you need TSH, FT4 and FT3. Also extremely important to test vitamin D, folate, ferritin and B12

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to 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)

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular/cheapest choice for testing thyroid and vitamins. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

cjrsquared profile image
cjrsquared

It varies from person to person, I have no thyroid and take 100mcg levothyroxine and 12.5 mcg liothyronine and work full time and am relatively well. I have a suppressed TSH and ft3 and ft4 about 2/3 of the way in range. A work colleague also with no thyroid takes 300 mcg levothyroxine and 40 mcg liothyronine and she has a high TSH, and low in range ft3 and ft4. She struggles with fatigue. There is no one correct dose, it is the one that works for you. Do you have recent bloods and their ranges to post for advice? How do you feel ?

MMAndrea52 profile image
MMAndrea52 in reply tocjrsquared

I only reduced to 75 last Tuesday prior to that I was on 81.2 then before that 87.5. As my TSH was undectable and my FT4 over range. FT3 lower end of range. All vits optimal, b12 being over range. They’ve told me for ages to reduce cos of my bloods but was scared as don’t want to go hypo. Grey goose gave me some good advice in that take the endos advice lower then at least iv tried that, if my FT4 doesn’t come down then I can nag for trial T3. Symptoms I get are crazy ass bouts of anxiety, outbursts I can’t control. Other than that I was relatively well. No weight gain, not cold all the time. Not constipated. Struggle with energy sometimes, but eat a good health diet, and take selenium + zinc supplement. Eat makerel twice a week. Go the gym twice a week. Always seem to have a cold not sure if it’s allergies as I’m sensitive to everything. GG advised I stick to this dose 75 for 6 weeks till my next blood test, as i have been known to take a tiny bit more or a tiny bit less if I don’t feel right. In all honesty I don’t feel my body suits the levythroxine as iv had a reaction since I was first given it, yet pre op when I had carbimazole I was on top of the world, blissful. I truly believe I would be better with about 50mcg levythroxine and a little bit of T3 daily. But my endo Won’t even entertain the idea of T3. If u go to my homepage youl see all my past to date results there. Thanks 😊 ps iv always been given teva. My last results were

TSH 0.04 (0.35-5.00) mU/L

FT4 23.6 (11.0 23.0) pmo1/L

FT3 4.0 (3.9-6.78) pmo1/L

Total vit d 123 adequate

B12 973 high

FancyPants54 profile image
FancyPants54 in reply toMMAndrea52

You've always been given Teva? Right from the start? And you have never felt right on Levothyroxine?

If the answers to the above questions are all 'yes' then I think you need to try a different brand before you give up on Levo. A lot of people have trouble with Teva brand. It made me very unwell very fast. When it's time for a new prescription, ring up and ask for a different brand. Perhaps try Mercury, or any other one really. It's well worth a try to get away from Teva for a bit and see if it helps you feel better.

MMAndrea52 profile image
MMAndrea52 in reply toFancyPants54

Yes I was going to ask next time I’m at the docs

FancyPants54 profile image
FancyPants54 in reply toMMAndrea52

Good. Well worth a try.

NickP1 profile image
NickP1 in reply toMMAndrea52

Ask for Mercury Pharma, I didn't feel well on other brands. It may work for you.

MMAndrea52 profile image
MMAndrea52 in reply toFancyPants54

Btw is it true .50mcg tabs have no or relatively few fillers

FancyPants54 profile image
FancyPants54 in reply toMMAndrea52

No idea, sorry.

helvella profile image
helvellaAdministrator in reply toMMAndrea52

In the USA, they do not have any colorants. In the UK none is coloured anyway.

MMAndrea52 profile image
MMAndrea52 in reply tohelvella

No fillers I meant

helvella profile image
helvellaAdministrator in reply toMMAndrea52

Impossible. My reply, though brief, was why this idea came about. If you are sensitive to colourants and the majority of tablets are coloured (as in the USA), then taking 50 microgram tablets avoids them. (Might not be true everywhere.)

The amount of levothyroxine in a tablet is so small you could not make tablets without bulking agents.

You could assume that a levothyroxine is only excipients (inactive ingredients) and you would be very close to right in terms of quantities! The amount of excipients might be different in 25, 50 and 100 microgram tablets. Some companies appear to use the same mixture for two (or more) dosages. Whereas others seem to use a different mixture - e.g. to make the 25 microgram tablet a more manageable size.

pennyannie profile image
pennyannie

Hello MMMAndrea

Just as a point of reference, a fully function working thyroid would be supporting you with approximately 100 T4 plus 10 T3 daily.

Since you have had a medical intervention and your thyroid removed I think it only logical that both these vital hormones should be on your prescription.

Some people get by on T4 alone, some people simply stop converting the T4 into T3 and some people need both these hormones monitored and dosed independently to reach a level of well being acceptable to the patient.

It is also essential that vitamins and minerals, as detailed on this site are optimal for thyroid hormone replacements to work.

I read your thyroid was removed because you have Graves Disease.

Graves is an autoimmune disease and as such you have it for life, and it's in your blood.

Your thyroid was the victim in all this and not the cause.

The cause was an attack on the thyroid by your immune system.

The thyroid is a major gland, and when under attack, you become unwell, and the symptoms can be life threatening it not medicated, but simply removing your thyroid doesn't solve the underlying autoimmune condition.

It is essential you are managed on T3 and T4 blood test results, and not the TSH.

The Graves antibody TSI / TRab controls the TSH and will give false low reads, suggesting you may be overmedicated, when in fact, you might be suffering the opposite, very low hormones

There are a couple of books that have helped me understand my situation better:-

Graves Disease A Practical Guide by Elaine Moore - this American lady has the disease and also runs a very comprehensive website :

Tired Thyroid - from hyper to hypo to healing by Barbara S Lougheed - this American lady has the disease and amongst other things debunks the over reliance of the TSH reading :

Your Thyroid and How to Keep it Healthy by Dr Barry Durrant Peatfield - this English doctor is with hypothyroidism. The book is an easy good common sense approach to all things thyroid, as to what the thyroid does and what those without a thyroid need to know to compensate for it's loss.

MMAndrea52 profile image
MMAndrea52 in reply topennyannie

Hi penny Ann thank you so much for that. It’s a lot to take in. But I’ll go over n over it and show it to my endo. They kept saying I was over medicated and have now insisted I reduce to 75. Its week 2 and I’m feeling colder (the weather has gone colder mind) and I’m like not sleeping as good as I usually do, but I’m more tired muscles feel sore and achy (tho I have had a cold) I’m terrified of going hypo. But now have to ride this low dose out till the 6 week mark blood test. I was ok, just getting bad anxiety tho that could be due to existing anxiety exasperated. The way I feel now I just want to up my dose already but everyone saying wait till get bloods done . . My endo Won’t entertain the thought of T3. I wish I’d never had my thyroid removed 😫😔

pennyannie profile image
pennyannie in reply toMMAndrea52

Yes I know what you mean, I'm learning about my own situation backwards.

Since graves seems to be stress and anxiety related, my situation was exacerbated by the lack of help and knowledge I found within the medical profession.

Is there an option to see a different endocrinologist who maybe more open to T3 ?

I believe there is a list of such people held by Thyroid uk.

All you can do is to try and educate yourself on where you are now and become your own best advocate and take back some control yourself,

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