endocrinologist who has listened to me. - Thyroid UK

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endocrinologist who has listened to me.

raine-wager profile image
15 Replies

my endocrinologist has decided to give me a 6 month trial of liothyronine 5mg and lowered my levothyroxine from 100 to 75 . I haven’t started yet as only just got the prescription. Is anyone else on both and has it helped? Thank you

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raine-wager profile image
raine-wager
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15 Replies
crimple profile image
crimple

raine-wager, do you have your latest TSH, T4 and T3 test results? Most endos seem keen to reduce levothyroxine dose before adding in liothyronine. However, it isn't always necessary and without your thyroid results its difficult to say how you will get on.

jgelliss profile image
jgelliss in reply to crimple

Agreed.

humanbean profile image
humanbean

There are quite a few people on the forum who take Levo and T3.

The last test results you posted :

healthunlocked.com/thyroidu...

give a level for Free T4 that is 69% through the reference range and a level for Free T3 that is 46% through the reference range.

When people add T3 to a dose of Levo it is common for the Free T4 level to drop a little bit, even if the Levo dose isn't reduced. I don't think your doctor needed to reduce your Levo dose just because you were adding T3, but it is common for doctors to do this. They are terrified of T3. But you might be fine, we're all different.

Another problem with adding T3 (as far as doctors are concerned) is that it often reduces TSH. In fact I would say it is practically impossible to give a patient sufficient T3 to help them get well without reducing TSH by more than a doctor is happy with. In your last test results your TSH was only just in range. But many of us on the forum do very well despite TSH being under range. It is doctors who are afraid of that, not patients. If your Free T4 and Free T3 are well in range (and often in the upper half of the range) then patients usually feel well. The TSH is usually not a problem.

Another thing is that your Levo has been reduced by a lot (25%) and replaced with only 5mcg of T3 (which is a low dose for T3). It is a good idea to start on a low dose of T3 and build it up as necessary, but to have reduced your Levo by 25mcg and added 5mcg of T3 is rather excessively cautious. But again, you might be fine.

One of the things that doctors often do in the UK is to set thyroid patients up to fail when they introduce T3. In the UK T3 is vastly more expensive than it is in other countries, so doctors really hate prescribing it, but they put the patient off by making them feel worse.

You might find this link of interest :

healthunlocked.com/thyroidu...

jgelliss profile image
jgelliss in reply to humanbean

You are so right. My first introduction to T3 was to lower my T4 significantly. I hate to think back how awful I felt. Your right that sometimes the T4 does not need to be lowered to add especially low dose T3. I was told that the T3 can raise the T4 since it does not need to to convert T4 to T3.

humanbean profile image
humanbean in reply to jgelliss

I was told that the T3 can raise the T4 since it does not need to to convert T4 to T3.

I don't think I've ever seen that happen from other people's results. It sounds like waffle from the doctors who don't know what they are talking about or just want to pull the wool over the patient's eyes.

Marz profile image
Marz

Hi - I see you joined some 5 years ago - so in that time there have been many posts about adding T3 to T4. I know it's difficult to keep up with the posts here - especially when feeling unwell. I find scrolling through the topics on the daily Newsfeed helpful and read the ones that catch my eye to learn more about our condition. Have learnt so much from others here since joining in 2011 🌻

Hope you feel better soon.

raine-wager profile image
raine-wager in reply to Marz

I do read the topics but i don’t retain the information or understand it sometimes.

Marz profile image
Marz in reply to raine-wager

I know it's hard. Keep reading and re-reading and eventually it makes sense !

SlowDragon profile image
SlowDragonAdministrator

Retest thyroid levels 6-8 weeks after starting on T3

Always test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Day before test, split your 5mcg T3 into 2 doses, taking last 2.5mcg approx 8-12 hours before test

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

I would agree it’s unlikely you need to reduce dose levothyroxine

Approx how much do you weigh in kilo?

Likely to see Ft4 has dropped too much, and will need to experiment with increasing dose up, perhaps to 87.5mcg initially

5mcg T3 is low dose……more typical is 10mcg or 15mcg as eventual dose per day. Splitting T3 as 2 or 3 x 5mcg

But we always start on low 5mcg dose initially….

Looking at previous posts you have poor kidney function ….likely to see this improve once thyroid is correctly treated

tandfonline.com/doi/full/10...

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

raine-wager profile image
raine-wager in reply to SlowDragon

Thanks for replying, I need to loose at least 5 stone, levo is alumis, I don’t always get the same brand. I am no better than I was 5 years ago probably worse. Also been diagnosed with chronic fatigue now. Have added my results, not sure what you mean about my kidney function I thought it was ok. I appreciate your input. Lorraine

Blood test results
SlowDragon profile image
SlowDragonAdministrator in reply to raine-wager

Looking at previous posts…..I don’t think you have ever had both TPO and TG thyroid antibodies tested privately?

NHS won’t test TG antibodies unless TPO antibodies are high

As your TPO antibodies are low, you would need to test privately

healthunlocked.com/thyroidu...

You’ll probably need to test privately now anyway….rare for NHS to test T3 ….even if prescribed T3 (madness)

Have you had ultrasound scan of thyroid?

I thought some previous posts suggested low GFR

Guideline’s on dose levothyroxine by weight is approx 1.6mcg Levo per kilo per day …..so if over weight, likely you have been under medicated on just 100mcg levothyroxine

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

raine-wager profile image
raine-wager in reply to SlowDragon

Last antibodies May 21 TSH receptor antibody level (XaEO4) < 1.1 u/L [0 - 1.75]

SlowDragon profile image
SlowDragonAdministrator in reply to raine-wager

That’s to test for Graves’ disease (hyperthyroid)

For Hashimoto’s you need TPO and TG antibodies

Always test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Day before test split T3 into 2 or 3 smaller doses spread through the day and last 1/2 or 1/3rd of daily dose approx 8-12 hours before test

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Assuming you have autoimmune thyroid disease, you need coeliac blood test BEFORE considering trial on strictly gluten free diet

SlowDragon profile image
SlowDragonAdministrator in reply to raine-wager

Which brand of levothyroxine is your 100mcg tablet

The only brand that makes 75mcg tablets is Teva

Teva upsets many people

Teva contains mannitol as a filler, which seems to be possible cause of problems.

So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Glenmark or Aristo (100mcg only) are lactose free and mannitol free. May be difficult to track down Glenmark, not been available very long

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets

Accord only make 50mcg and 100mcg tablets

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

New guidelines for GP if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

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

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Abby2003 profile image
Abby2003

Hi Raine-wager. Just over a year ago my endo made much the same decision, but I have been left in 10mcg liothyronine. At that time I was told to reduce T4 and a number of people on this site advised it may not be the best thing to do. They were absolutely correct and after a month or 2 I started to feel worse. I’ve put my T4 back up. You may find the reduction in T4 suits you, my advice is that it may not be, so monitor closely.I have no medical background and I wouldn’t presume to give any constructive advice, just passing in my experience. Good luck 🤗

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