Endo. advice and thyroid results advice please

[SootyOF]

For about 20 years I have been taking 100mcg Levothyroxine and last results on this dose were:

TSH 0.8 (0.27- 4.2 )

Free T3 3.2 (3.1-6.8)

Free Thyroxine 21 (12-22)

I've trialled Liothyronine 10mcg once a day for 10 weeks now and my endo has reduced my levothyroxine to 50mcg. After 8 weeks my blood results (taken 24 hrs after the last dose of both meds as instructed by my endo) were showing the following:

TSH 3.49 (0.27- 4.2 ), 0.8 before the trial

Free T3 3.2 (3.1-6.8), 3.2 before the trial

Free Thyroxine 12.8 (12-22), 21 before the trial

As a result of this blood test my endow has now suggested increasing the levothyroxine to 75mcg, remaining on Liothyronine 10mcg once per day and having another blood test in 4 weeks. He has said my T3 level is ok because it was 24hrs after my last dose of T3.

My questions are:

Am I right in thinking the T3 should sustain some level of increase in the blood, higher than bottom of the range, before taking the next dose; surely it's not healthy to drop down to the bottom of the range for a period every day. (I have read a lot about splitting the dose but my endo said this isn't necessary). I've had a go taking 5mcg of T3 twice a day but the dose isn't high enough to improve my symptoms.

I don't quite understand why my endo has increased the T4 med and not the T3 when both are at the lower end of the range?

What are your thoughts please?

[Jaydee1507 Administrator]

Several points your Endo got wrong.

Firstly reducing your Levo by too much which is a common mistake, no wonder you feel no benefit of the added T3.

Secondly testing FT3 following last dose 24hrs previously is too long. The spacing should be Levo 24hrs and T3 8-12hrs. See graph below. So the result you have gives a false low result.

Have you tried splitting your T3 into 2 doses if possible? It has a short half life so fo many people works better like that. Again, your Endo doesn't listen to the experiences of his patients and it can often be preferable to split T3.

FT3 after dose graph

[SootyOF in reply to Jaydee1507]

Thank you Jaydee for your response. I did have a go at splitting the dose in 2 as a result of my blood test but taking only 5mcg at a time wasn't sufficient to make a positive impact on my symptoms. It is hard work trying to get my endo to listen to my views but this group sure is giving me the confidence to speak up. Thanks for sharing the dosing graph, it seems that is exactly what has happened in regards to my results.

thanks so much

[Jaydee1507 Administrator in reply to SootyOF]

Next test, delay taking the T3 the day before to allow 8-12hrs before the test, or split it just that day. It's probably not making enough of an impact as it's too low a dose but the test you have there won't be accurate.

[SeasideSusie Remembering]

SootyOF

My opinion (as someone who takes Levo plus self sourced T3) and knowing that patients have more understanding of this than doctors and assuming that your endo reduced your Levo to 50mcg based on your first set of results and when adding T3:

1) Your endo reduced your Levo by too much initially. They all seem to do this, but a reduction of 25mcg Levo would have been enough, then add T3, then see where your levels lie.

2) By reducing your Levo from 100mcg to 50mcg this will have affected not only your FT4 level but also your FT3 level. Even though your original results showed that you weren't converting much T4 to T3, there is some and by reducing your Levo it has lowered the amount of T3 you would normally produce, and adding 10mcg T3 wasn't enough to make up for this.

As a result of this blood test my endow has now suggested increasing the levothyroxine to 75mcg, remaining on Liothyronine 10mcg once per day and having another blood test in 4 weeks.

Good, he should have only reduced to 75mcg to start with. It would be better to leave 6-8 weeks before testing after an increase in Levo to allow levels to settle. I find I need 8-10 weeks for levels to stabilise.

He has said my T3 level is ok because it was 24hrs after my last dose of T3.

T3 has a half life of 24 hours so it's better to test half way between doses, ie the 8-12 hours we suggest here. That would give a better picture. You'll always have a low FT3 result if you leave 24 hours between last dose of T3 and test.

Am I right in thinking the T3 should sustain some level of increase in the blood, higher than bottom of the range, before taking the next dose; surely it's not healthy to drop down to the bottom of the range for a period every day.

I think you're getting a skewed picture due to the 24 hour time gap between last dose and test. If you were on the right dose of Levo and right dose of T3 and tested at the right time then you wouldn't have this sort of result.

(I have read a lot about splitting the dose but my endo said this isn't necessary).

Regardless of what your (or anyone's) endo says, unless they have personal experience of hypothyroidism and treating with combination hormone replacement, they can't know. Some people do fine with once a day dosing. Some people need split dosing. It's all down to the individual so they need to experiment to find what's right for them. One size does not fit all but doctors seem to have a hard time understanding this.

I've had a go taking 5mcg of T3 twice a day but the dose isn't high enough to improve my symptoms.

10mcg T3 may or may not be the right dose for you, but you have to get the right dose of Levo as well.

I don't quite understand why my endo has increased the T4 med and not the T3 when both are at the lower end of the range?

If those were my results I'd increasing Levo at this stage too. Get your FT4 up, whatever natural conversion you have will increase your FT3. Some of us on combo meds are fine with low FT4 as long as FT3 is in the upper part of it's range. Some of us need them balanced at 50% through range or higher. It's for us to find out what suits us and requires a lot of time and patience tweaking the dose of both hormones. It really isn't a quick fix.

So if those were my results, at this stage I'd be increasing Levo to 75mcg and retesting in 8 weeks to check levels. I'd then decide on my next step after seeing the results.

[SootyOF in reply to SeasideSusie]

Thank you SeasideSusie. I feel more educated from your response than I ever have from my endo. I think after 20 years of feeling rubbish and finding low T3 results may be the cause I'm now very impatient to get to the correct level! I am disappointed with my recent results, but know it takes time. Thanks so much

[SlowDragon Administrator]

Welcome to the forum

You also need vitamin D, folate, ferritin and B12 levels tested

What vitamin supplements are you currently taking

When were vitamin levels last tested

Do you have autoimmune thyroid disease also called Hashimoto’s usually diagnosed by high thyroid antibodies

[SootyOF in reply to SlowDragon]

Thank you for the Welcome SlowDragon. So glad to have found this group. I tested vit D, folate, ferritin and B12 about 10 weeks ago and all the levels were at the bottom of range, with Vit D only 27. I'm now taking iron, vit C, folate, B12, vit D supplements plus holly basil for high cortisol and a probiotic. Not retested yet though.

I had graves which was treated over 20 years ago with RI.

thank you so much

[SlowDragon Administrator in reply to SootyOF]

Please add actual results and ranges

And say exactly what vitamin supplements you are now taking

Essential to take any iron supplements at least 4 hours away from levothyroxine

GP should have prescribed LOADING dose vitamin D

Did they?

NHS Guidelines on dose vitamin D required including details of loading dose vitamin D

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But on levothyroxine, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing 

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7. 

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease 

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease 

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Interesting article by Dr Malcolm Kendrick on magnesium 

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[SootyOF in reply to SlowDragon]

Thank you SlowDragon

My GP hasn't been involved with providing blood tests and prescribing supplements. There's most definitely a lack of understanding with regards to hypothyroidism itself let alone the deficiencies that can go with it.

My initial results and supplements:

Iron 14.6 (5.8-34.5) - taking 14mg iron and 1000mg Vit C

Ferritin 22.7 (13-150)

Transferrin Saturation 24.4 (20-50)

TIBC 59.8 (45-81)

UIBC 45.2 (24.2-70.1)

CRP HS 0.85 (0-5)

Folate 5.46 (3.89-19.45) - taking 400ug folate

Vit D 37 (50-200) - taking 2000IU Vit D with 100ug K2

Vit B12 (can't find original results, was low in range) After already taking 100ug Vit B12 it's now 123 (37.5-150)

Not had any of the above retested yet, except Vit B12 as I've been aware of this deficiency for a bit longer.

I've read through some of the links so far, the implications of Vit D deficiency is a bit of an eye opener.

Thanks so much

[SlowDragon Administrator in reply to SootyOF]

Iron 14.6 (5.8-34.5)

Ferritin 22.7 (13-150)

Transferrin Saturation 24.4 (20-50)

TIBC 59.8 (45-81)

UIBC 45.2 (24.2-70.1)

Suggest you retest in 3-4 months

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Look at increasing iron rich foods in diet 

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

An article that explains why Low ferritin and low thyroid levels are often linked 

preventmiscarriage.com/iron...

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin 

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin 

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron 

Medichecks iron panel test 

medichecks.com/products/iro...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid 

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron 

healthline.com/nutrition/he...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

Low Iron implicated in hypothyroidism 

healthunlocked.com/thyroidu...

Ferritin range on Medichecks 

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

[SlowDragon Administrator in reply to SootyOF]

Folate 5.46 (3.89-19.45) - taking 400ug folate

B12 (can't find original results, was low in range)

After already taking 100ug Vit B12 it's now 123 (37.5-150)

You could now change to a good quality vitamin B complex. This should keep B12 high enough and keep all B vitamins in balance

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

Thorne currently difficult to find at reasonable price, should be around £20 

If you want to try a different brand in the meantime, one with virtually identical doses of the ingredients, and bioavailable too, then take a look at Vitablossom Liposomal B Complex. Amazon sometimes has it branded Vitablossom but it's also available there branded as Yipmai, it's the same supplement

amazon.co.uk/Yipmai-Liposom...

or available as Vitablossom brand here

hempoutlet.co.uk/vitablosso... &description=true

Or 

Igennus Vitamin B complex. Nice small tablets. Full dose is 2 tablets per day. Most people are fine with just single tablet 

igennus.com/products/super-...

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...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and separate B12 just for that week

[SootyOF in reply to SlowDragon]

Thank you, your advise is much appreciated