Low TSH with normal T4 and T3: My latest results... - Thyroid UK

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Low TSH with normal T4 and T3

boo16 profile image
23 Replies

My latest results show abnormal TSH 0.01 with normal T4 and T3.

My GP is going ring me in the next hour to discuss these results. I don't have to hand the actual results ranges at the moment. I only know that for the past 6 years I have had the same problem. Does this mean I am taking too much Levo. and am Hyperthyroid now?

I don't have any signs of being hyper. My temp is constantly between 35- 35.4, still overweight, constipated etc. sluggish memory, fatigued constantly.

Advice anyone, particularly if it is dangerous for TSH to be so low? I actually took my Levo an hour before bloods as I didn t now they were going to take bloods at that time.

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23 Replies
SlowDragon profile image
SlowDragonAdministrator

Never ever agree to dose reduction based on just TSH

Last dose levothyroxine should be 24 hours before test

And always test early morning for highest TSH

What time was this test done?

ESSENTIAL to test full thyroid, TSH, Ft4 and Ft3 plus vitamin D, folate, ferritin and B12

When were vitamin levels last tested

What vitamin supplements are you currently taking

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

ALWAYS test thyroid levels early morning, ideally around 9am and last dose levothyroxine 24 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

Only do private testing early Monday or Tuesday morning.

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

PurpleNails profile image
PurpleNailsAdministrator

how normal are the FT4 & FT3? In range? We can offer more advice if you add result & range.

Also if you took FT4 before test, the FT4 would be false high..

1tuppence profile image
1tuppence

Hi boo16. I'm not an expert by any means...am sure one will be along shortly. As you took your levo an hour before your test it means your results won't be exact anyway.

I have a similar issue with TSH 0,02..and it's been like this for years now. I have no symptoms of being hyper .... and a similar issue with GP's wanting to lower my dose of levo. I agreed to do that 5 years ago. From 125 mcg down to 100mcg. I felt so ill I thought I was suffering from blood cancer, which runs in my family. Then the penny dropped...and I realised I'd dropped my dose. I put it back up again, and definitely improved. So, I'm not agreeing to do that again.

When given my first trial of Levo it was because of awful symptoms not the blood test results, which always came back "within range" and made me suffer unnecessarily for years.

On Thursday I'm seeing an endo, TUK recommended one, and will see what he has to suggest. My T3 is low in range, and T4 top of range, so I don't convert well at all. I'm following advice from here and taking the recommended vits to help improve my conversion.

What are your Vit D, Vit B, B12, Folate and Ferritin results like?

Wishing you well.

boo16 profile image
boo16

Thanks to everyone that responded.

Spoke to GP (always a different locus so no continuity of care at all) Has reduced my dose form 150 to 100. I take Eltroxin the branded one.

I took my levo about 3/4 hours before the blood test around 11.30 am

results:

T3 5.6. (3.5 - 6.5)

T4 16.6 (7.0 - 17.0)

TSH. 0.01 (0.20 - 4.50 ) Abnormal

Folate 23 ( 3.1 - 19.9 ) Abnormal

B12: 180 (145 - 910 ) Told normal ( refused any further B12 injections and Pernicious Anaemia diagnosis removed from my records ?????)

An abnormal bone profile. Told probably D3 deficient and to retest in 2 months and to not take any more tablets???

In a complete state of confusion now.

Sparklingsunshine profile image
Sparklingsunshine in reply toboo16

Hi

As far as I understand it Levo should never be changed by more than 25mcg in one go. And removing the PA diagnosis is crazy unless you had B12 deficiency for another reason, but unless they tested you for PA at the time it's all academic anyway. Sorry but that doctor sounds really clueless. And that's putting it kindly.

Just to say I had a raft of blood tests in June, they tested my B12, even though I get jabs. Mine came in over 2000, but they've never suggested stopping my jabs. In theory I could survive quite nicely on that for years but if you've got PA or B12 deficiency for another reason, then they need to find out the cause before stopping them.

I don't know for sure if I have PA but I've always struggled with vitamin levels of all kinds. When my B12 was very low my GP gave me high strength tablets for a couple of weeks. My blood tests showed the level hadn't moved so I've always assumed it's PA related. As PA stops B12 being absorbed orally. I don't know if my GP ordered the specific PA test at the time.

greygoose profile image
greygoose in reply toboo16

Oh dear! you're dealing with some very ignorant doctors, there!

For a start, reductions shouldn't be more than 25 mcg at a time. Reducing by 50 mcg in one go is likely to make you ill.

Secondly, he shouldn't be dosing by the TSH when your FT3 is still in-range - although I wouldn't go so far as to call it 'normal', because 'normal' is how you feel, not a number, but it is well in-range. And that is the most important number. You are only over-medicated if your FT3 is well over-range.

Having said that, taking your levo just before the test will possibly have given you a false high FT4, but not by much because 1 hour is not really long enough for it to get into the blood stream.

It won't have affected your TSH, either. That is affected by the time of day. It would have been higher before 9 am. Never agree to a blood test past that time. It's your right to refuse and make an appointment later at a time that suits you better.

As to your B12, that is rediculously low and pretty sure you do still have PA - it doesn't just go away! Your result should be at least 550 for good health. I think you have a lot of grounds there to write a formal letter of complaint to the practice manager, there, because this is mal-practice and neglect.

boo16 profile image
boo16 in reply togreygoose

Hi, the practice is run at the moment by locus only one or 2 days per week. It is a nightmare. Am going to look at changing but in my area there is only one other that doesn't have one good review. Only changed to this practice a few months ago when I changed address. At least my old practice listened and although I had a negative TSH did not change my meds by blood tests but by symptoms.

greygoose profile image
greygoose in reply toboo16

Oh dear. They sound awful! What sort of bad reviews does the other practice have? They might be bad in some areas, but there might be someone there who knows something about thyroid.

boo16 profile image
boo16 in reply togreygoose

Rude receptionists. Doctors that wont listen. But I they do have lots of doctors. It is a big health centre which I don't care for but think I will have to give it a go otherwise will have to resort to buying my Levo abroad again which is what a threatened to do unless they prescribed branded as I was being given sometimes 4 different brands a month, Teva being the one causing problems.

greygoose profile image
greygoose in reply toboo16

Having a bigger choice of doctors has to be a plus. I think you'd be wise to at least try it.

boo16 profile image
boo16 in reply togreygoose

I should have mentioned that I asked if I could take 125 and he said no.

greygoose profile image
greygoose in reply toboo16

Because he has no idea what he's doing. He knows nothing about treating hypo. He also has no idea that he's there to advise you, not to dictate to you! You should be allowed to give your informed consent to any change in treatment. That, in itself, is unprofessional and reprehensible.

SlowDragon profile image
SlowDragonAdministrator in reply toboo16

B12: 180 (145 - 910 )

Told normal ( refused any further B12 injections and Pernicious Anaemia diagnosis removed from my records ?????)

Obviously your B12 is absolutely dire

Suggest you ask advice on PAS Healthunlocked about getting B12 injections reinstated

healthunlocked.com/pasoc

Meanwhile

Have you tried taking B12 supplements

high folate

Have you been supplementing folate or folic acid?

Rather than just taking folic acid

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

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-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

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) 

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 continue separate B12

Low B12 symptoms 

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

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.

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 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

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

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

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

How other member saw how effective improving low B vitamins has been 

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator in reply toboo16

An abnormal bone profile.

Told probably D3 deficient and to retest in 2 months and to not take any more tablets???

are you currently taking vitamin D supplements

If yes, how much

Test twice yearly via NHS private testing service when supplementing 

vitamindtest.org.uk

pennyannie profile image
pennyannie

Hello Boo :

The TSH was originally introduced as a diagnostic tool to help diagnose hypothyroidism.

It was never intended to be used once the patient was on any form of thyroid hormone replacement as then they must be dosed and monitored on the Free T3 and Free T4 results and any adjustment to dose is by 25mcg and a repeat blood test after 6-8 weeks to reassess symptom relief - and nothing to do with where the TSH sits, before or after the dose adjustment.

Having taken your medication prior to the blood test your results are not accurate and you need to have another blood draw.

Ensure you have an early morning appointment, fast overnight just taking in water and do not take your T4 hormone replacement until after the blood draw.

Stop any supplements you maybe taking around a week before the blood test, especially anything containing biotin, so we can see exactly what your body is holding onto.

Your T3 and T4 are in range - there was no need for this dose reduction - let alone a drop of 50 mcg - totally uncalled for and as you are still suffering hypothyroid symptoms this will only make matters worse for you.

Your serum B12 should be up and well over 500 :

If supplementing Folate - ease off a bit:

Have you a ferritin reading there ?

Vitamin D - I don't quite understand the comment :

boo16 profile image
boo16 in reply topennyannie

I don't have a ferritin result that I can see. I am not supplementing Folate. I have an abnormal bone profile come back. This locum said I am probably deficient in vitamin D but not to take any until they test just for Vitamin D in 2 months. I do have osteoporosis , arthritis in hips, wrists and feet. Coeliac as well. I was told that if I wanted to continue B12 injections then had to supply and do them myself.

I saw some years ago Dr Skinner? He said despite my blood tests and replacement Levo amounts he considered me just by looking to be very hypo.

pennyannie profile image
pennyannie in reply toboo16

Well, yes, I would agree as your results look pretty good but your temperature alone tells me you are not on an optimal dose of thyroid hormone replacement.

Inflammation and any physiological stress either emotional or physical can also compromise health though your T3/T4 conversion, if anything is running a little fast ?

The accepted conversion ratio when taking T4 only is said to be 1 / 3.50 - 4.50 - T3/T4 with most people feeling at their best when they come is the range at 4 or under :

So to find your conversion ratio you simply divide your T4 by your T3 and I'm getting yours coming in at just under 3 :

boo16 profile image
boo16

Well that looks okay then?

pennyannie profile image
pennyannie in reply toboo16

If you feel ok running with a slightly fast metabolism - so be it :

Ranges. ratios, and guidelines - are just that - not everybody fits perfectly into this tick box exercise and sadly it seems symptoms are the last consideration rather than the first.

boo16 profile image
boo16

Don't think I am running a fast metabolism. Slow heart rate 50 with pacemaker. Cold all the time, sluggish, low temp, difficulty losing weight, constipated mostly, foggy thinking..where did my memory go?

DippyDame profile image
DippyDame

How do you feel? That is the important question.

Your description reflects hypothyroidism/ undermedication

Dosing by TSH, which is what your GP seems to be trying to do, is a recipe for disaster!!

The most important reading is FT3 followed by FT4

If FT3 is within range, even slightly over, you are unlikely to be overmedicated

TSH is a pituitary, not a thyroid hormone, it reflects the overall level of thyroid hormone in the blood. Crucially, it does not give the level of each hormone which is why using it as a marker for dosing is complete nonsense....and the reason so many patients are left feeling unwell. It was developed to diagnose hypothyroidism....nothing else!

thyroidpatients.ca/2021/07/...

I need high dose T3-only to function so my TSH is totally suppressed....and has been for several years. I'm not in danger of dying any time soon from low TSH!!

Ah....Just read your post after speaking to that rediculous GP...no wonder you are confused. He is clueless.

Taking levo before test would give a raised result and dropping dose by 50mcg is too much....25mcg at any change!

Suggest, if possible, that you have a full blood test as SlowDragon has explained

It must be done after at least 6 weeks on a steady dose and before 9am to give the highest TSH

As for that GP's response re vitB12 and vit D....it is irresponsible!

You need to see a GP who can do joined up thinking and this one is not he!.

Frankly it terrifies me when I read about the number of incompetent medics out there....lord knows how they ever qualified.

So....blood test first, post new labs and members will advise.

I suspect you will need an increase... not that ill informed reduction.

We're all here for you...good luck !

boo16 profile image
boo16 in reply toDippyDame

I just got a copy of a letter today from my Cardiologist sent to my ‘ locum GP.

This relates to blood tests done at the hospital a week before those done bu GP. I had no idea when I went to the hospital that the Cardiologist asked me to get bloods done before I left.

I had no idea she had requested TFT,s. Was supposed to be looking for enzymes for heart damaged after Covid. Anyway, bloods taken at 3.30:pm after obviously breakfast and lunch at the hospital.

Letter states, ‘ thyroid hormones DERANGED. TSH.. 0.01.. T4. 20. - No T3 done and no range given. Different area so ranges used will not be same as GP. Oh, and my cholesterol level is even higher!!!

Letter states, please sort this out as lady clearly has hyperthyroidism, Oh dear.. now waiting for the fallout once GP reads this letter.

DippyDame profile image
DippyDame in reply toboo16

What type/ dose of thyroid medication are you taking?

I would refuse to agree to any medication changes until a full thyroid test has been carried out.

TSH, FT4, FT3, vit D, vit B12, folate, ferritin and antibodies TPO and Tg.

You may need to test privately to achieve this ...which is an absolute disgrace

You know the score re testing.....before 9am away from food and drinks and 24 hrs after last levo, or 12 hrs for T3.....and at least 6 weeks previously on a stable dose

I'm wondering if sufficient T3 is reaching the nuclei of the cells where it becomes active. FT3 may look normal in serum testing but it must reach the nuclei of the cells to become active.

it is possible that low cellular T3 is causing your symptoms causing cellular rather than glandular hypothyroidism

rejuvagencenter.com/thyroid...

Just a thought...

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