Please help with blood test results.

[cbraffe]

I am currently taking levothyroxine 100mg 5 days weekly plus t3 10mg split into 5mg twice daily. I take thorn B complex, vit D and a separate B12

My recent blood test results are:

T4 12.8pmol/L

Range: 9-23pmol/L

TSH 2.2 milliunit/L

Range 0.3-4.2 m,illiunit/L

T3 4pmol/L

Range 2.4-6pmol/L

Ferritin 156ug/L

Range 20-300ug/L

B12 695 ng/L

Range 160-800ng/L

Folatw 9.6 ug/L

Range >2.7

Vit D 91.7nmol/L

Range 50-150nmol/L.

I used to take 100mg of levothyroxine daily however, this was reduced to 5 times daily in jan 2024.

Since then I have been very unwell with fatigue and severe anxiety and gut issues. I do see a private endocrinologist. I weigh 85 kg.

Please advise if I could increase the dose. I am seeing the endo next week.

Thank you.

[Jaydee1507 Administrator]

I'm not surprised you're feeling terrible What were your results your Endo decided you need to reduce Levo on?

Free T4 (fT4) 12.8 pmol/L (9 - 23) 27.1%

Free T3 (fT3) 4 pmol/L (2.4 - 6) 44.4%

Suggest you go back on your original 100mcg a day Levo.

If your Endo is trying to keep your TSH within range then you may need to find a new Endo to be well.

[cbraffe in reply to Jaydee1507]

Hi Jay dee,It was because my TSH was suppressed . I am currently bed bound . I am going to go back to my original does. GP wanted to prescribe anti depressant medication. I will post the previous results soon.

[Jaydee1507 Administrator in reply to cbraffe]

You could do with increasing your folate. Its not optimal at all. Aim for a level of 20. Buy a separate 400mcg methylfolate. Jarrows do one but there are plenty of cheaper versions that work.

NICE guidelines let you take responsibility for your results:

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility”

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. “

nice.org.uk/guidance/ng145

[pennyannie]

Hey there again :

Well done on the ferritin and other vitamins and minerals -

folate could do with getting into double digits - i now aim for a ferritin at around 100 - folate 20 - active B12 125 ( serum B12 500++ ) and vitamin D at around 125:

I'm not on synthetic T3/T4 combo but your T4 is much too low in the range -

I don't understand - you were on 100 mcg daily but got reduced to ??? - as it just says 5 - so was this 50 mg a day ?

Guessing you felt better when on 100 mcg - why was your T4 reduced in January -

When taking T4 only we generally feel best when the T4 is up in the top quadrant of its range with the T3 tracking just behind at around 60/70% through it's range -

and would think on a combo you'ld be looking for a T4 at least around 70% with a T3 tracking at around 60% :

Your TSH is signalling that you are not on enough thyroid hormone replacement :

As it should be maintained under 2 when taking any form of thyroid hormone replacement and likely once optimally medicated fall down towards the bottom of the range and at least under 1 .

P.S. Do you have the blood tests from January that resulted in this dose reduction of T4 please ?

[cbraffe in reply to pennyannie]

Thank you. I will do. That is the highest my ferritin has been. It was 13 last year. I am a vegan so it is hard. But will do my best as I really struggling

[cbraffe in reply to pennyannie]

I was feeling so well. Infact I forgot the pain and stiffness. Now I can't describe what I am going through

[pennyannie in reply to cbraffe]

I'm so sorry - but you can come back from this knowing you'll never be here again :

[cbraffe in reply to pennyannie]

Please how do you calculate the percent?

[pennyannie in reply to cbraffe]

I do it in my head but have an old Casio calculator to check myself - but when I 've tried to explain this in the past I've just confused others !!!

I think many use another quicker method that is mentioned on here somewhere - I'll try and find a link for you :

So on your dose of 100 mcg daily you felt much improved but because of low TSH your dose of T4 reduced to ????

even though the doctor should know that T3 lowers the TSH and that with Graves Disease the TSH is a very unreliable measure of anything when low/suppressed and you must dose and monitor on the Free T3 and Free T4 :

So in January your T4 was running at around 50% with your T3 tracking just behind at 47% through its range and you knew you were going in the right direction.

Hope that makes sense - I'll try and find this calculator gizmo for you :

[cbraffe in reply to pennyannie]

I am going to start doing my blood tests privately. Been off work for months as I can't get out of bed. My skin is so pale. Thanks again for the support

[pennyannie in reply to cbraffe]

Go low and slow and don't consider going back to work soon -

wait until you have built back up your T4 level - and test again after 6-8 weeks of being on 100 mcg T4 daily :

[cbraffe in reply to pennyannie]

Thank you so much forcthe support. I will not go back yet.

[pennyannie in reply to cbraffe]

Just tagged you - I hope - into a post by Helvella where you'll find the calculator options forum members use :

Hope you're not going to catch me out and find I've made a mistake !!

[cbraffe in reply to pennyannie]

Thank you.

[cbraffe in reply to pennyannie]

Thank you.

[cbraffe in reply to pennyannie]

Our journey is so similar. I have been through all the tests you had in the last 5 months. Dry mouth, fatigue, brain fog and low mood. I have lost 12kg in weight which made GP do urgent referrals for several procedures. I had the endoscopy the dry mouth made it uncomfortable.

[pennyannie in reply to cbraffe]

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg -

So that's what you are aiming to replace now you have lost your thyroid -

Just so upset as you knew you were ' getting there ' and feeling so much better last January - so the good news is you know now what you need to do - ignore the TSH - and the medical professional who put you into this spiral of under medication.

[cbraffe in reply to pennyannie]

Definitely. I thought paying privately will be the best option. This platform is a life saver. Thanks again

[pennyannie in reply to cbraffe]

The weight loss would have been ' flagged ' as needing investigation - and as uncomfortable as it was - it's good to know nothing else is going on :

Mine was prompted by my age and low ferritin and with no saliva I couldn't swallow the tube - and at the other end the pain so unbearable I fainted and woke up attached to so many machines - and a man determined to finish what he had started -

I was dealing with no saliva and think the RAI had damaged / dried out my whole digestive track from top to bottom as I had no natural lubrication.

My mouth best described as feeling like ' cracked cement ' :

I had both these procedures years earlier - long before a diagnosis of Graves and had no problems with either,

and I did say I thought it was going to be difficult as this time I had no saliva for the endoscopy procedure and could I be ' knocked out ' - but that was refused and the procedure eventually aborted as I couldn't swallow as and when ordered -

It was suggested I should have another appointment for a barium meal - I declined - no one was listening to the actual problem of my having no saliva with which to enable an internal investigation.

I was swung around and found the same issue at the other end and there you go -

with nature intervening when it all got too much for me as the pain unbelievably, unbearable.

My saliva slowly returned and I'm now back to normal though my taste buds haven't recovered and nothing tastes as I remember - and all my original dental work - caps and bridge needed replacing.

[cbraffe in reply to pennyannie]

So sorry to hear that. For me investigations are on going.

[cbraffe in reply to pennyannie]

I have ordered the folate and will increase my levothyroxine before the appointment

[cbraffe]

Thanks so much for the support. Blood test results in January were:Ferritin 82 ug/L

Range 20-300ug/L

Folic acid 8.2 ug/L

Range >2.7

T3 4.1

Range 2.4. 6pmo/L

T4 16

Range 9-23pmol/L

TSH 0.24

Range 0 3 -4,2milliunit