Endo insists that my low FT3 is fine!!!!!! - Thyroid UK

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Endo insists that my low FT3 is fine!!!!!!

dragon51 profile image
9 Replies

TSH 0.31 mU/L 0.30 - 6.00

Free T4 20.2 pmol/L 10.0 - 22.0

Free T3 4.2 pmol/L 3.6 - 64

posted these results a few times on the site and got some brilliant feedback. Most people pointed out that FT3 is rather low due to poor T4 to T3 conversion. After reading your amazing feedback I decided to opt for getting my levo reduced and so adding T3. To help conversion issues I use Doctor's Best Vit D3, Igennus Super B-Complex and AAVAlabs Fullnesium. Have not had vitamin levels checked yet with Medicheck just yet but aim to do so.

Anyway I managed to get an emergency appointment with Endo yesterday afternoon and discussed the above blood results and requested T3. Endo insisted the blood results were fine regardless of how I kept insisting that FT3 was too low. She got so angry with me.....!!! Furthermore she hit the roof when I requested T3 and said I would have to sign a disclaimer if I was given T3....? Her reaction when I mentioned T3 really alarmed me. Her option was to increase my levo from 100mcg to 125mcg which I did not accept. In the end she selected to discus my case with her boss, (head of department), regarding prescribing me T3 and reducing levo. She promised to call me after she spoke with her boss.

She called me back next day as promised and I have an appointment with her boss next Wednesday specifically to discus my request for T3.

Any suggestions please as to how I can prepare myself to meet THE BOSS?

Furthermore after the emergency appointment I have increased levo dose to 125mcg, for the time being and managed to set some sleep last night. Lack of energy also improved just after one dose of 125 levo. How can this be with?

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SlowDragon profile image
SlowDragonAdministrator

Previous post 8 months ago showed low folate and vitamin D

healthunlocked.com/thyroidu...

You need to stop taking Vitamin B complex a week before any blood tests as biotin can falsely affect test results

Ideally you would get new Medichecks test BEFORE seeing endocrinologist

But testing needs to be 6-8 weeks after each dose increase and only just increased to 125mcg

Suggest you discuss options to add T3 subject to next test result

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many especially after thyroidectomy or RAI

rcpe.ac.uk/sites/default/fi...

New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Research shows 20% Patients with no thyroid can not regain full health on just Levothyroxine

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

dragon51 profile image
dragon51 in reply to SlowDragon

Hi Slow Dragon it was an emergency endo appointment which I was unprepared for so I already dosed in the morning time with 100mcg levo same with B complex. Hence the results will be false

Consequently the endo Boss I am seeing next week will be working from these false results... How on earth do I explain this to him?

SlowDragon profile image
SlowDragonAdministrator in reply to dragon51

Tell him you were on high dose biotin supplements, so the results are unreliable .....be interesting if he is aware of biotin issue

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

endocrinenews.endocrine.org...

Therefore you will need new test.

They are rarely aware of importance of not taking levothyroxine in 24 hours before blood

If blood test was taken later than 9am and after eating breakfast TSH will be lower than could be

Having taken levothyroxine that morning FT4 will be high

As you have now increased levothyroxine to 125mcg (as per other Endo advice) you will get FULL Thyroid and vitamin testing in 6-8 weeks via Medichecks (having stopped biotin supplements week before)

Also suggest you perhaps look at getting Dio2 gene variation test too

thyroiduk.org/tuk/testing/D...

This takes about 4 weeks to process. Is not dependent on thyroid levels.

Free T4 20.2 pmol/L 10.0 - 22.0

Free T3 4.2 pmol/L 3.6 - 6.4

Ft4 was 82% through range

Ft3 only 26% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Would also agree with jimh111 that it might be better to stick on 100mcg and request 3 month trial of T3

dragon51 profile image
dragon51 in reply to SlowDragon

Hi Slow Dragon after reading information in all the links you so kindly sent me I have decided to take your advice and that of jimh111 and stick with 100mcg for the time being. At last emergency appointment with endo I did request a trial period with T3 starting with low dosage and necessary adjustments to levo along with monitoring my progress. Well outcome of this is an appointment with a more senior endo (the boss) this Wednesday to discus T3 issue.

As mentioned in my previous message my blood results will be unreliable due to taking dose of thyroxine and B12 complex on day of blood test. Have printed off info about Biotin you pointed out becuase as you said it will be interesting to see if senior endo is aware of this problem.

I intend to put the T3 issue on hold for now pending cardiology investigations that are ongoing . Will tell the endo this at the end of our discussion because I also want to harp on about the importance of looking at FT4 and FT3 conversion rather than just TSH.

My next step is gene test

Blue Horizon thyroid test

Medicheck for vitiamin checks

Think I read something in one of the New NHS England paper about T3 not being allowed for people with angina .......???? Could be wrong about this but will print it off and study it in depth later.

thanks again Slow Dragon the information links you sent are priceless.

SlowDragon profile image
SlowDragonAdministrator in reply to dragon51

Medichecks test includes thyroid and vitamins £99 (or £79 if on offer)

medichecks.com/products/thy...

Blue Horizon do similar test ...but do now include cortisol test (may or may not be useful). Usually a bit more expensive than Medichecks .

Currently on offer £99;

bluehorizonbloodtests.co.uk...

Always do any kit thyroid test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test ...on. Monday, Tuesday or Wednesday

Remember to stop taking biotin supplements a week before. Iron supplements too if want base iron levels

How to get TSH as high as possible

thyroidpatients.ca/2020/01/...

Regenerus Dio2 dna test - takes 3-4 weeks to get results.

thyroiduk.org/tuk/testing/D...

dragon51 profile image
dragon51 in reply to SlowDragon

I have no idea as to why I am writing this this post or where it will lead me, if anywhere. Just know I have lost faith in the NHS to fix hypo and cardio problem. Both problems are inter-connected (hypo issue caused cardio problems) and I dont know if the symptoms I have is thyroid related or cardio stuff. Suspect it is both because as already mentioned they are inter-connected. Just know i really gone downhill to the point whereby I have no energy whatsoever really cold and so confused. Breaking point came this morning when I realized I would have to get rid of my beloved energetic dog (bearded collie) because I am no longer able to exercise her any more. (see to her needs as I used to). This is horrendous and I am devastated.

Got an appointment with endo this afternoon to discuss trial of T3 which I initially wanted but i am going to cancel this appointment because I have no faith in endo nor do I trust them. I really believe that they do not see the welfare of the patient as a priority. How can you trust someone who does not look at the whole picture ie TSH, FT4 and FT3???? What happened to the Hypocratic Oath of do no harm.

Took no thyroxine today, (incase endo done a blood test but i cancelling now) stopped taking B12 a few days ago also not going to take blood pressure pill today or beta blocker........or bloody aspirin. Why take these meds when I feel worse on a day to day basis....(gone downhill). Definition of insanity is doing the same thing day after day (taking meds) and getting the same result!!!! Well in my case seeing no improvement except going downhill.

No bloody point going on if I cannot care for my dog. Yeah I being negative but so what I am falling apart and not able to battle anymore. Lifeforce: (energy) mental physical and emotional not to mention spiritual gone on to a distant land. Enough is enough.

Do I need advice???? I honestly don,t know.....!

However I so want to thank you all on this site for your priceless help and support. The information you all sent me really helped so grateful.

thanks jean

DippyDame profile image
DippyDame

Your conversion may be poor because your nutrients were low.

Folate, ferritin, vitamin D and vitamin B12 all need to be optimal to support good conversion. It is wise to achieve this before"requesting" or adding T3.

Have you considered a thyroid genetic test, poor conversion can usually be assumed with high FT4 and low FT3, but a positive Dio2 test sometimes helps achieve a prescription for T3

T3 is a very powerful hormone and is usually added as a last resort.

I guess your endo is a diabetes specialist and lacks knowledge of some thyroid issues.

However, it looks as if you may have proved the endo right in that you felt better after increasing levo to 125mcg as she suggested - the option you rejected at your appointment. You need to bear this in mind when meeting the consultant next week.

BUT, you haven't tested since you added supplements so it may be that the increase has improved your conversion, testing will prove that.....so you may not need T3 after all.

Follow SlowDragon's advice re testing.

Approach this consultation in a calm manner, not easy if you feel unwell, but it offers you a better chance of clearly explaining your situation. The endo you saw did herself no favours by getting angry....don't follow suit.

It can be helpful to make a list of the things you want to ask/point out at the consultation.

jimh111 profile image
jimh111

I wouldn't increase your levo to 125 mcg until you have seen the endo. You may have felt better after one day because of the stress from the appointment. Short term stress can sort of 'wake you up' and feels a bit like a hormonal increase.

Increasing your levo will raise fT3 a little since type-1 deiodinase (D1) increases when fT4 is high but it is D2 that raises T3 levels in vital tissues such as the brain and skeletal muscles. I would take the opportunity to ask for some liothyronine (L-T3), perhaps 5 mcg twice daily. You can always try 125 mcg levothyroxine at a later date, you might not get another chance to try liothyronine. Given your cario issues it would be reasonable for the endo to ask you to reduce your levo if they prescribe some liothyronine.

Wetsuiter profile image
Wetsuiter

the endo was angry? maybe she needs her thyroid tested

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