Combinations: Can someone please help me, after... - Thyroid UK

Thyroid UK

137,936 members161,765 posts

Combinations

dandiliontilt profile image
35 Replies

Can someone please help me, after feeling unwell for such a long time after total thyroidectomy I have been prescribed 10mg of linothyamin along with my levothyroxine, which has now been reduced from 175 to 125.

I take my thyroxine at night about 9pm.

My question is, and inspite of much research is the a certain time to take the 10 linothyamin as I’ve been told to take it in 2 parts.

I’ve only been doing this trial for 2 weeks and feel exhausted. Any advise/suggestions would be appreciated.

Written by
dandiliontilt profile image
dandiliontilt
To view profiles and participate in discussions please or .
Read more about...
35 Replies
SlowDragon profile image
SlowDragonAdministrator

Several previous posts discussed your really terrible vitamin levels

healthunlocked.com/thyroidu...

Before considering adding T3 we must have GOOD vitamin levels

When were vitamin D, folate, ferritin and B12 last tested

Please add most recent results

EXACTLY what vitamin supplements are you currently taking

On 175mcg levothyroxine What were TSH, Ft4 and ft3 results and ranges BEFORE T3 was added

Always test thyroid levels as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription…..if yes which brand

dandiliontilt profile image
dandiliontilt in reply to SlowDragon

I stopped taking any vitamins because I thought it might interfere with the absorption of the T3 and I wanted to give it every possible chance to work. Bloods were last taken 3 weeks ago. I will get hold of results. New bloods to be taken in 4 weeks.

I was taking 5mg at 7am and 5 at 7pm but still feeling exhausted in the afternoon and needed to nap.

So the day before yesterday and for a couple of days I’ve set an alarm for 4am and took the next at 12noon. This is clearly not working because it’s making me desperate and totally wiped out. Should I go back to 7 and 7 and give it more time to settle.

dandiliontilt profile image
dandiliontilt in reply to SlowDragon

These are latest blood tests- I really don’t have a clue what it means, and don’t have the clarity of mind to try understand it. Can you shed any light on it please.

SlowDragon profile image
SlowDragonAdministrator in reply to dandiliontilt

You haven’t added any recent test results

SlowDragon profile image
SlowDragonAdministrator

So you are currently taking 5mcg T3 waking and 5mcg T3 roughly 12 hours later

Is this correct

Like levothyroxine, T3 should be taken on empty stomach and then nothing apart from water for at least an hour after

Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine or T3

dandiliontilt profile image
dandiliontilt in reply to SlowDragon

Yes I did when I first had it 2 weeks ago. But was still needing a nap and fatigued so set alarm for 4am and 12 noon.

Yes, I always take it away from food and drink.

dandiliontilt profile image
dandiliontilt in reply to SlowDragon

Also I take teva thyroxine. (Lactose free) It was changed last year from accord. The endo said if these linothyamin don’t make any difference then perhaps this is something I have to live with because it can’t always be put right.

SlowDragon profile image
SlowDragonAdministrator in reply to dandiliontilt

What was reason for thyroidectomy?

Cancer, or Graves’ disease or goitre?

Previous vitamin results

vit D3 53.0nmol/L

Ferritin 37ug/L (10.0 -300.0

Vit B12. 169ng/L. (180.0 - 1000.0)

Folate. 3.4ug/L (>4.0)

obviously these vitamin levels were really extremely poor

We must have everything correct BEFORE adding T3

EXACTLY what vitamin supplements have you been taking?

Presumably prescribed by GP

B12 injections or daily B12

Daily Folic acid

Ferrous fumerate iron supplements

Vitamin D - if GP not prescribed, need to self supplement

Optimal vitamin levels are

Vitamin D at least around 80nmol and around 100nmol maybe better

Serum B12 at least over 500

Folate and ferritin at least half way through range

Have you had coeliac blood test done

Are you on absolutely strictly gluten free diet

Or lactose free diet

dandiliontilt profile image
dandiliontilt in reply to SlowDragon

Hello SlowDragon

I’m not taking any vitamins/minerals. I thought it might counteract the T3 and the vits I needed to take with food there just didn’t seem enough hours in the day.

Now after hearing your responses I need to reassess and try to work something out.

I feel pathetic and helpless which is very unlike me. Thank you for your support.

No not strict lactose free, just milk and levothyroxine.

Thyroid removal due to cancer & left next dissection two years later.

SlowDragon profile image
SlowDragonAdministrator in reply to dandiliontilt

Like thousands of U.K. thyroid patients you have had appallingly poor care

No thyroid hormones will work unless vitamin levels are optimal

Unfortunately being left inadequately treated results in LOW stomach acid, this leads to poor nutrient absorption and low vitamins as direct result

Most medics are baffled by the interconnection

Please add most recent results you mentioned

Endocrinologist may have reduced levothyroxine dose too much

Depends on what your results were on 175mcg BEFORE T3 was added

If Ft4 was near or above top of range then yes likely needed SMALL Dose reduction in levothyroxine. Usually 25mcg

If Ft4 was mid range, probably didn’t need any dose reduction in levothyroxine, or perhaps just 12.5mcg reduction

If Ft4 was low in range, you needed dose INCREASE in levothyroxine before considering adding T3

And ALWAYS we need optimal vitamin levels

That usually means supplementing continuously

Yes that does involve working out a schedule to fit supplements around levothyroxine (and T3 )

dandiliontilt profile image
dandiliontilt in reply to SlowDragon

Thank you SlowDragon, I will obtain my latest blood results over the next week. And get back into a routine with the vitamins. I’m very tempted to reinstate the levothyroxine back to my original 175.

SlowDragon profile image
SlowDragonAdministrator in reply to dandiliontilt

Get results first

When was last test done….just before T3 was started presumably

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested.

Also EXTREMELY important to test folate, ferritin and B12 at least annually

Testing vitamin D twice year when supplementing

Thousands upon thousands of U.K. patients forced to test privately to make progress

ALWAYS test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

ALWAYS get same brand levothyroxine at each prescription

Possibly Teva doesn’t suit you

When testing on levothyroxine plus T3

Day before test split dose of T3 into 2 or 3 smaller doses, taking at approx 8 hour intervals, with last dose 8-12 hours before test

Batty1 profile image
Batty1 in reply to dandiliontilt

I split my T4 and T3 I take them twice a day and all vitamins 3-4 hours later. T3 is not a magic bullet to all of our issues especially being thyroid-less for myself T3 made me a sane person without it Im an unbearable human and pretty scary but it hasn’t been my energy pill or help with my weight just keeps me from being looney…. Seriously thought I was loosing my mind before taking t3.

pennyannie profile image
pennyannie

Hello again Dandilion:

Having had a quick look back I see 2 months ago all your vitamins and mineral needed supplementation and no thyroid hormone works well until ferriin, folate, B12 and vitamin D are all optimal in their ranges.

I took me over a year to build up my ferriin from 22 to 60 and read ferritin needs to be at least 70 for thyroid hormone conversion.

I now maintain my ferritin at around 100, folate at 20, B12 active 70+ serum B12 50 + and vitamin D at around 100:

I think the reduction in your T4 of 50 mcg and replacing is with 10 cg T3 a little extreme ;

Do you have your T3 and T4 blood test results and ranges from when on 175 mcg T4 and before starting this trial with 10 mcg T3 Liothyronine ?

dandiliontilt profile image
dandiliontilt in reply to pennyannie

Thank you, new blood tests due in 3 weeks. The latest I have 11/8/21 is

Full blood count

Haemoglobin concentration 121 g/L [115.0 - 165.0]

Total white blood count 5.0 10*9/L [3.6 - 11.0]

Platelet count - observation 259 10*9/L [140.0 - 400.0]

Red blood cell count 4.13 10*12/L [3.8 - 5.8]

Haematocrit 0.354 1/1 [0.37 - 0.47]

Below low reference limit

Mean cell volume 85.7 fL [80.0 - 100.0]

Mean cell haemoglobin level 29.3 pg [27.0 - 32.0]

Neutrophil count 2.32 10*9/L [1.8 - 7.5]

Lymphocyte count 1.64 10*9/L [1.0 - 4.0]

Monocyte count - observation 0.40 10*9/L [0.2 - 0.8]

Eosinophil count - observation 0.63 10*9/L [0.1 - 0.4]

Above high reference limit

Basophil count 0.04 10*9/L [0.02 - 0.1]

pennyannie profile image
pennyannie in reply to dandiliontilt

I'm sorry my knowledge doesn't extend past thyroid - so can't advise on any of the above ;

Do you have a recent TSH, T3 and T4 thyroid blood test result from when you were on 175 mcg T4 and before the trial of T3 and the drop in your T4 medication ?

I would think there has to be one for the endo to suggest the T4 dose reduction ?

dandiliontilt profile image
dandiliontilt in reply to pennyannie

All of the above is exhaustive for me too. I will try to obtain the most recent blood results for endo when she’s back after the break. Thank you for your help.

pennyannie profile image
pennyannie in reply to dandiliontilt

OK then -

Start a new post when you have the full thyroid results and ranges :

Briefly explain dose adjustment of T4 and having been prescribed 10mcg T3 :

If you have any current ferritin, folate, B12 and vitamin D results and ranges we also need then , or if not, include those of 2 months ago and what you are now supplementing accordingly.

SlowDragon profile image
SlowDragonAdministrator in reply to dandiliontilt

No thyroid results here

You need results and ranges for

TSH

Ft4

Ft3

Folate

B12

Ferritin

Vitamin D

Was last test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

dandiliontilt profile image
dandiliontilt in reply to SlowDragon

Yes definitely, but a year ago. With the exception of TSH ft3 & ft4This was just before addition of T3. I will get these results next week.

Latest vit test
SlowDragon profile image
SlowDragonAdministrator in reply to dandiliontilt

Those were results from year ago

They need retesting every 6 months or soon initially after starting on supplements

Presumably you were on iron supplements

GP should retest iron and ferritin 3-4 times year when on iron supplements

EXACTLY What vitamin supplements were you taking before you stopped

dandiliontilt profile image
dandiliontilt in reply to SlowDragon

Vitamin B12 as hydroxocobalam sub-lingualVitamin D3 + K2 100ug

SlowDragon profile image
SlowDragonAdministrator in reply to dandiliontilt

How much B12

Vitamin D plus K2 - presumably you mean 1000iu

Is it Better You vitamin D mouth spray

Unlikely high enough dose

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D needs testing minimum every 6 months

Will need to test privately.

GP not currently allowed to test

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

What about iron supplements?

Folic acid supplements prescribed by GP?

Or preferably vitamin B complex self supplementing

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Thorne Basic B is a recommended option that contain folate, but is large capsule. You can tip powder out if can’t swallow capsule

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

healthunlocked.com/thyroidu...

dandiliontilt profile image
dandiliontilt in reply to SlowDragon

Wonderful, lots of resources here, thank you.

jimh111 profile image
jimh111

You really need TSH, fT3, fT4 measured so you can see where you are at the moment, whether you are absorbing the thyroid hormone well. You can get these done with a finger prick test as this may be easier, cheaper and quicker at the moment.

It's good to split your liothyronine, I take it at breakfast and bedtime. Your levothyroxine was reduced a little too much for just 10 mcg liothyronine but as you were on 175 mcg it may have been too much anyway. In any event it would take more than two weeks for the levo dose reduction to take full effect.

If you can get TSH, fT3, fT4 measured we have a starting point to work from.

Vitamin / mineral levels don't matter unless they are very low when they can cause symptoms similar to hypothyroidism. Hypothyroidism tends to lower some and they recover when the hypothyroidism is corrected, this can give the misleading impression that the vitamins are fixing the thyroid. By all means supplement as a backup but focus on your thyroid. For that you need current numbers.

dandiliontilt profile image
dandiliontilt in reply to jimh111

Thank you so much. I’ll get hold of my TSH T3 and t4 next week then when drs are back to normal. Where can I get a finger prick test please.

Shall I up the Levo to 150 do you think?

SlowDragon profile image
SlowDragonAdministrator in reply to dandiliontilt

Get results from BEFORE starting T3 from GP/endo on Tuesday

No point doing private testing of thyroid levels really until been on current dose for 6-8 weeks

Test early morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Last 5mcg dose T3 approx 8-12 hours before test

Only do private test early Monday or Tuesday morning

Stop any supplements that contain biotin a week before all blood tests (eg vitamin B complex)

List of private testing options

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 by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

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

dandiliontilt profile image
dandiliontilt in reply to SlowDragon

Sorry SlowDragon, I think I’ve misunderstood this….Get results from BEFORE starting T3 from GP/endo on Tuesday

Because iv already started the T3 and t4 combo.

SlowDragon profile image
SlowDragonAdministrator in reply to dandiliontilt

Yes…but you said you were tested by GP or endo just before starting on T3

What are those results

Endocrinologist should have tested vitamin levels too

dandiliontilt profile image
dandiliontilt in reply to SlowDragon

Ahh yes, I am going to contact them tomorrow for the results, and go from there.

jimh111 profile image
jimh111 in reply to dandiliontilt

I use Monitor My Health as they are cheap and an NHS lab so you know they are accredited and the results are more likely to be accepted by NHS doctors.

humanbean profile image
humanbean

I’m not taking any vitamins/minerals. I thought it might counteract the T3 and the vits I needed to take with food there just didn’t seem enough hours in the day.

If you need help deciding when to take things, and what must be kept separate, taken with food, can be taken together etc then if you list what you are taking - prescribed or not, supplements, hormones etc and tell us when you take them currently then we could help you to create a timetable that works for you.

If there are things you want to take but don't take at the moment then mention those as well.

dandiliontilt profile image
dandiliontilt in reply to humanbean

Thank you so much. I’ll do this once I’ve sent for the vitamins recommended. Thank you. I’m a reasonably intelligent person but seem to get overwhelmed with much of this.

SlowDragon profile image
SlowDragonAdministrator in reply to dandiliontilt

You need to test vitamin levels

humanbean profile image
humanbean in reply to dandiliontilt

The wrong levels of thyroid hormones and nutrients makes it very difficult to think.

You may also like...

If on combination treatment

75% in range for both ft3 and ft4. I still don't feel well. What can I do? Where do you need your...

Starting T3 combination

meds/trial prescribed by Endo. Will be starting T3 5mg once daily. My thyroxine will be reduced to...

Combination therapy T4 + T3

since 2 weeks I started to take 10 mcg T3/ 2 days on top of my daily levothyroxine. I remember my...

Starting combination treatment

on 125mcg of levo. I did notice some improvement after the introduction of vitamins/minerals....

NDT and Levo combination

over the limit. I would like to take some NDT so I don't have to take so much levo. Because of...