advice on test results - high TSH/ Low T3/ high... - Thyroid UK

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advice on test results - high TSH/ Low T3/ high cortisol?

seagreenblue profile image
37 Replies

Hi,

My thyroid is underactive, and i take 50mg of levothyroxine a day. I'm still fatigued, and slow to lose weight. I have been testing my adrenals and thyroid, plus other things (fasting blood glucose, iron levels, inflammation) to finally take control of my body and stop living like this!

My thyroid results show high TSH and low T3.

My cortisol strangely spikes very high in the morning - and comes down in the afternoon.

imgur.com/a/8k3dYu6

Does anyone have advice on how to treat my high cortisol, and to increase my T3?

recommended online sources to find NDT or armour would be welcome via private message - thank you!

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SlowDragon profile image
SlowDragonAmbassador

50mcg of Levo is only the standard STARTER dose

How long have you been left on just 50mcg

Which brand of levothyroxine is it

Looking at your only previous post 9 years ago…..you have coeliac disease

Is that correct?

Presumably your hypothyroidism is autoimmune

on Levo these aim is to increase dose slowly upwards (usually in 25mcg steps) until TSH is around or below 1 and Ft3 at least 50-60% through range

When hypothyroid low vitamin levels are EXTREMELY common

And with coeliac disease too

Exactly what vitamin supplements are you taking

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

High cortisol is common when on inadequate dose of levothyroxine as adrenals try to compensate for low thyroid levels

See GP for next increase in levothyroxine to 75mcg

Ideally don’t change brand of levothyroxine while changing dose

Only change one thing at a time

Retest thyroid levels again 2-3 months after each increase in dose

seagreenblue profile image
seagreenblue in reply toSlowDragon

Thanks so much - yes i have coeliacs and thankfully not hashimotos (auto-immune thyroidism).

Test was taken first thing in the morning. B12 and irons tested very recently (within the last month).

I've been on 50 mg for a long time now (maybe 5/6 years). At one point my gp randomly started prescribing me 25mg, so i went with that for a while and felt awful!

If I have such low T3, i'd rather try NDT from a reputable online source - wouldn't this be a good idea? I have tried to ask for T3 through the GP, but its a big no.

SlowDragon profile image
SlowDragonAmbassador in reply toseagreenblue

Your hypothyroidism is almost certainly autoimmune as you are coeliac and this autoimmune

50mcg is only STARTING dose

Levo doesn’t “top up” your own thyroid output…..it replaces it

So you are almost certainly on inadequate dose

Please add most recent results and ranges

ALWAYS test early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

is this how you do your tests?

which brand of levothyroxine are you taking

exactly what vitamin supplements are you taking

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

Also both TPO and TG thyroid antibodies tested at least once

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

NHS only tests TG antibodies if TPO are high

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum…..especially when coeliac

SlowDragon profile image
SlowDragonAmbassador in reply toseagreenblue

B12 and irons tested very recently

please add results and ranges

seagreenblue profile image
seagreenblue in reply toSlowDragon

my thyroid and adrenal results and ranges are in a link I put in my first post .....copy and past this URL into your browser: imgur.com/a/8k3dYu6

Yes, i made sure to take the test with this protocol :)

Brand of levo is either Accord or Wockhardt UK - does it matter that they change?

i dont take any regular supplements but eat very well - lots of veggies though limited brassicas, good fats, fermented foods, nuts & seeds, etc

thanks very much for the help! I'll reply with copies of my recent blood test

SlowDragon profile image
SlowDragonAmbassador in reply toseagreenblue

i dont take any regular supplements but eat very well - lots of veggies though limited brassicas, good fats, fermented foods, nuts & seeds, etc

How much red meat?

As coeliac and hypo you’re always going to have to work hard on maintaining GOOD vitamins

When was vitamin D last tested

Most of us need to supplement vitamin D and separate magnesium daily and continuously

Gluten Free diet is very low in magnesium

Vitamin D

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 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 when supplementing

Can test via NHS private testing service

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...

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

We frequently need higher doses than NHS guidelines

NHS Guidelines on dose vitamin D required

panmerseyapc.nhs.uk/media/2...

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...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAmbassador in reply toseagreenblue

Brand of levo is either Accord or Wockhardt UK - does it matter that they change?

it can do

Many people find Levothyroxine brands are not interchangeable.

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

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

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

July 2024

Crescent levothyroxine. Dosages: 12.5, 25, 50, 75, 100

(Not yet known if all approved dosages are or will be available).

Excipients: lactose monohydrate, maize starch, croscarmellose sodium, gelatin and magnesium stearate.

Lactose free brands - currently Vencamil or Teva

Vencamil is lactose free and mannitol free. originally only available as 100mcg only, but 25mcg, 50mcg and 75mcg tablets became available Sept 2024

Prior to March 2023 Vencamil was called Aristo

Vencamil often very well tolerated/best option for many people

How to get Vencamil stocked at your local pharmacy

healthunlocked.com/thyroidu...

Posts discussing Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu....

Teva makes 12.5mcg 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free, but contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Helpful post about Teva

healthunlocked.com/thyroidu...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Relatively new ……Hillcross brand

This is a box, rather than a brand. 50mcg and 100mcg are Accord brand….but beware 25mcg is Teva brand

Helpful post about different brands

healthunlocked.com/thyroidu...

List of different brands available in U.K.

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

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.

Government guidelines for GP in support of patients 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.

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).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

seagreenblue profile image
seagreenblue in reply toSlowDragon

My B12 is 529 ng/l

strangely my serum iron is high, and serum ferritin slightly low

blood test results
seagreenblue profile image
seagreenblue in reply toseagreenblue

..

and i have a low RBC, so have been eating more iron
SlowDragon profile image
SlowDragonAmbassador in reply toseagreenblue

Yes Ferritin is virtually deficient

Very common to have low ferritin/iron when on inadequate dose levothyroxine

Low Ferritin will tend to lower TSH

Dec 9th NHS results

TSH at 2.9 is too high

No Ft4 or Ft3 results

Or vitamin D

When were Results on here done?

imgur.com/a/8k3dYu6

Free T4 (fT4) 9.27 pmol/L (7.86 - 14.41)

Ft4 only  21.5% through range

Free T3 (fT3) 4.3 pmol/L (3.8 - 6) 

Ft3 at 22.7% through range

helpful percentage calculator

thyroid.chingkerrs.online

Shows extremely good conversion

But Ft4 (levothyroxine) dose is far too low

When adequately treated on just Levo aiming for Ft4 at least 60-70% through range

Insist to GP politely on 25mcg dose increase to 75mcg daily

List all your hypo symptoms

As you have been left far too long on far too small a dose of levothyroxine ……You might initially want to increase slowly to 62.5mcg daily for 4-6 weeks before increasing to 75mcg

Retest again in 2-3 months after being on 75mcg daily

seagreenblue profile image
seagreenblue in reply toSlowDragon

hiya, thanks again for all the help SlowDragon and for taking the time out in your day to help!

I'd always thought: "I'd been taking Levo, and my T3 is always low, so it must be a conversion issue. " So am I right in thinking that the closer the % are (of T4 and T3 within their ranges), the more efficient the T4 to T3 conversion?

The thyroid adrenal tests were done in January 2025, just last month. I have a previous thyroid test done in 2018, which i've put above to compare.

I've definitely got the gist of the above, including asking my GP to gently increase my dose.

2018 test
SlowDragon profile image
SlowDragonAmbassador in reply toseagreenblue

So am I right in thinking that the closer the % are (of T4 and T3 within their ranges), the more efficient the T4 to T3 conversion?

Correct, yes ……currently you have excellent conversion of Ft4 to Ft3 ……but both are low because you have been left of only standard STARTER dose

Guidelines are quite clear that dose levothyroxine should be increased slowly upwards until on approximately full replacement dose of 1.6mcg per kilo of your weight per day

Unfortunately many GP’s haven’t actually read the guidelines

And/or

They are frequently terrified of giving patients too much Levo…..and we see many patients like yourself left languishing on grossly inadequate dose

If GP is reluctant to increase dose, pander to their lack of knowledge and request a “trial” increase to 75mcg

I have a previous thyroid test done in 2018, which i've put above to compare.

so how much Levo were you taking in 2018 and what vitamin supplements exactly

Free T4 (fT4) 13.8 pmol/L (12 - 22) 

Ft4 only 18.0% through range

Free T3 (fT3) 3.48 pmol/L (3.1 - 6.8)

Ft3 only 10.3% through range

Ferritin deficient

Vitamin D too low

Folate low

B12 high …….were you taking any B12 supplements?

SlowDragon profile image
SlowDragonAmbassador in reply toseagreenblue

Will ask FallingInReverse and humanbean to comment on

High iron and low ferritin

Cortisol levels will SLOWLY improve as Levo dose increases

FallingInReverse profile image
FallingInReverse in reply toSlowDragon

  seagreenblue

Are you supplementing iron at the moment (or up through the test results you posted above?)

edit - you have an indicator of iron overload. With that in mind before anyone here can give insight into how you might address - need to know more about your iron history, if supplementing - how much and when, and if you are aware of how much iron you are ingesting.

One set of test results at one point in time - particularly with possible iron overload - does not tell us enough. Let us know what you can!

seagreenblue profile image
seagreenblue in reply toFallingInReverse

Hi there - thanks so much for your reply!

I don't supplement iron - but i do eat a lot of cruciferous veg & spinach, so that must be the problem?

FallingInReverse profile image
FallingInReverse in reply toseagreenblue

  humanbean a few mixed results here … I’m not certain what it points to.

Ie,

High TSat ( 55.6%) usually a flag for iron overload. OP does not supplement or even eat a lot of iron rich foods. First thought hemochromatosis, but not given the low HB/rbc and low ferritin and the below.

I don’t see a transferrin number to help confirm it’s a false high, maybe I’m overlooking it, or should we just assume that?

So now we look for reasons for low iron profile -

CRP is also low… does this rule out inflammation-related anemia of chronic disease?

I see no stand out liver issues in the cbc, or not severe if any.

Maybe down to OPs celiacs and significant absorption issues and low transferrin production (if we can confirm that number.)?

Not really sure here.

SlowDragon profile image
SlowDragonAmbassador in reply toFallingInReverse

Looking at possible link between haemochromatosis and coeliac

This thread discusses low ferritin with coeliac…..but possibly haemochromatosis

patient.info/forums/discuss...

seagreenblue

Might be an idea to get tested for haemochromatosis

GP might not be keen

Private testing

haemochromatosis.org.uk/gen...

FallingInReverse profile image
FallingInReverse in reply toSlowDragon

My expertise is NOT iron overload : )

And so SD - I waffled on whether hemochromatosis could be at play but backed off due to the low ferritin and cbc items. Should have left it as “unlikely” vs ruling it out.

If available, a genetic test would eliminate a variable.

As in the case of high tsat when transferrin and ferritin are low, one could decide to supplement since the high tsat is a false high. A hemochromatosis test may be the crystal ball to show why that may or may not be a good next step.

The other thing re the very informative link you posted is it starts with “Suspected celiac as a result of this iron deficiency anemia.”

I originally was thinking the other way around - the celiacs is causing absorption issue, ie, a metabolic “cause” for the issue, vs a liver/inflammation/other actual cause.

I throw all this out there - a little out of my depth but thinking humanbean may add a layer of clarity!

SlowDragon profile image
SlowDragonAmbassador in reply toFallingInReverse

Agreed ….out of my depth too on haemochromatosis

Test at £129 is not too prohibitive

My Ancestry DNA test did reveal I have one genetic mutation (out of three?) suggesting possible haemochromatosis

my coeliac DNA test done by NHS after my endoscopy confirmed definitely gluten was an issue. Coeliac DNA test was inconclusive……things aren’t always clear cut

But at practical level cutting gluten out completely ……and subsequently dairy too ….both have given clear benefits

SlowDragon profile image
SlowDragonAmbassador in reply toFallingInReverse

£129 test is for the most common type

the test looks for the most common Type 1 mutations of genetic haemochromatosis.

reading on

Testing for all variants on haemochromatosis…..pricey

Haemochromatosis Type 3 (TFR2) : £1,400

Haemochromatosis Type 4 (SLC40A1/ferroportin disease) : £1,400

Haemochromatosis panel test (types 1 to 4 including FTH1, FTL, HAMP, HFE, HJV, SLC40A1, TFR2) : £1,750

SlowDragon profile image
SlowDragonAmbassador in reply toseagreenblue

i have coeliacs and thankfully not hashimotos (auto-immune thyroidism).

Both antibodies are currently negative …..but on Gluten Free diet TPO antibodies often reduce

Were they ever tested by GP at diagnosis?

How long since you were diagnosed with coeliac?

Suggest you consider getting ultrasound scan of thyroid

thyroiduk.org/testing/other...

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

seagreenblue profile image
seagreenblue in reply toSlowDragon

oh interesting about the GF diet.. How would having Hashimoto's affect my treatment? Would it mean anything if i did have it?

Yes, my anti-bodies were tested when I was first diagnosed with my thyroid and I also had a thyroid test in 2018, which showed no antibodies.

I was diagnosed Coeliac in 2012 approximately

SlowDragon profile image
SlowDragonAmbassador in reply toseagreenblue

How would having Hashimoto's affect my treatment? Would it mean anything if i did have it?

Medics are generally disinterested as to cause of a patient’s hypothyroidism

But yes it’s important to know

As you have one autoimmune disease (coeliac) other autoimmune diseases are more likely

Autoimmune diseases often appear together

Assuming, despite negative antibodies, your hypothyroidism is autoimmune

An ultrasound might reveal more

With Hashimoto’s approx 5% have coeliac, but further 81% of us with hashimoto’s have (or develop) gluten intolerance

Dairy intolerance is also common, approx 50% find benefit of cutting dairy out

Early stage autoimmune thyroid disease…..levels can hop up and down a lot …..but, over time thyroid becomes more damaged until it stops functioning completely

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

greygoose profile image
greygoose

Well, that's what hypothyroidism is: high TSH, low FT4/3. And the way to raise your Free levels is to raise your dose of levo (T4). And once your FT4 gets up to about 75 % through the range, compare it to the FT3 to see how well you convert. You might need to add some T3 to your levo.

50 mcg levo is only a starter dose. How long have you been on it?

However, one would expect your TSH to be higher with such low Frees. So, what time of day was the blood draw for this test?

Absolutely no point in testing rT3, it doesn't give you an useful information. It will tell you if your rT3 is high, but it won't tell you why.

If I were you, I'd leave your cortisol alone for the present. Once you're on a decent dose of levo, retest it and see how it has changed. It is good that it's high in the morning, and low at night so that you can sleep. :)

seagreenblue profile image
seagreenblue in reply togreygoose

Thanks for your helpful reply!

Test was taken first thing in the morning (9am). B12 and irons tested very recently (within the last month).

I've been on 50 mg for a long time now (maybe 5/6 years).

Thanks for the advice on the cortisol.. i might try to cut down coffee, and introduce ashwaghanda too., but will focus on fixing the levo.

I'm really keen to try a mix of T4/T3 through NDT or Armour etc, so if anyone can help with a source, i'd be grateful thank you!

SlowDragon profile image
SlowDragonAmbassador in reply toseagreenblue

I'm really keen to try a mix of T4/T3 through NDT or Armour etc,

Absolutely no point trying anything else until been on correct dose Levo at least 3-6 months and all four vitamins tested and improved to GOOD levels

Guidelines of dose Levo by weight

approx how much do you weigh in kilo

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

cks.nice.org.uk/topics/hypo...

bnf.nice.org.uk/drugs/levot...

nhs.uk/medicines/levothyrox...

Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.

Some people need a bit less than guidelines, some a bit more

TSH should always be below 2 on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

sciencedirect.com/science/a...

The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg.

seagreenblue profile image
seagreenblue in reply toSlowDragon

i see - I've gone by the advocacy on Stop the Thyroid Madness that promotes moving away from levothyroxine... but i will start by requesting my GP increase my levo dose, and then test again.. thanks!

my weight is approx 70kg

jgelliss profile image
jgelliss in reply toseagreenblue

I tried NDT. I found that being on synthetic T4 with added T3 for me personally works better. NDT has certain amount of T4 and T3. Going with T4 and T3 I found that I can adjust easier my T4 and T3 easily. Wishing you your best sorting out.

seagreenblue profile image
seagreenblue in reply tojgelliss

I'll pursue the advice of trying to balance things out just with Levo for now, which is also the simplest option - but i'm interested to know if you've had to go private, to be prescribed a T4/T3 mix?

jgelliss profile image
jgelliss in reply toseagreenblue

I understand you. I'm in US. The next time you run labs with your Thyroid markers try to have FT4 and FT3 done. Like this you can see if your a good converter T4 to T3. If your a Great converter you might not even need to add T3 to your T4.Best wishes for a Great Outcome.

SlowDragon profile image
SlowDragonAmbassador in reply toseagreenblue

70kg x 1.6mcg suggests your eventual daily dose of levothyroxine likely to be approximately 112.5mcg

seagreenblue profile image
seagreenblue in reply toSlowDragon

Thank you for all the useful links!

Noelnoel profile image
Noelnoel in reply toseagreenblue

I would caution against adding T3 to the mix until you’ve ascertained how well, or not, you convert T4 to FT3

seagreenblue profile image
seagreenblue in reply toNoelnoel

ok, thanks!

greygoose profile image
greygoose in reply toseagreenblue

I really, really would not introduce ashwagandha if I were you. It's unpredictable and you just don't need it. Experiment with it at a later date, when your thyroid hormones are at a decent level, if you like. But right now you really don't need that complication. Ashwaganbdha is not all it's cracked up to be. Just leave your adrenals alone to settle down.

Sorry, can't help with the NDT.

seagreenblue profile image
seagreenblue in reply togreygoose

thanks Greygoose for the help!

seagreenblue profile image
seagreenblue

Just want to add how grateful I am, after so much struggling and fatigue, for there to be people actually willing to go through all the numbers with me, and support and help with this journey 🩵

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