Confusing test results! : I had a total... - Thyroid UK

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Confusing test results!

MrsMark profile image
20 Replies

I had a total thyroidectomy 14 years ago. I have been on 150mcg per day of Levothyroxine since the operation. Two years ago I had Covid and pneumonia in both lungs. Since then, the medication has not been working, I am fatigued, putting on weight, dry skin, brittle hair, depressed and anxious, have a gravelly voice, am cold all of the time, not sleeping etc. A new endo has given me 10mcg per day of T3 to try, I've been taking this with 125mcg of Levothyroxine since 21st November. Initially, I felt well and after a week or so I was feeling very well, then, after Christmas I was back to where I started with all of the above symptoms.

If I’m reading the results correctly, which is unlikely, should I be reducing my T4? My blood test did not include ferritin so I have to do another test for that later. Any advice/help would be much appreciated xx

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MrsMark
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20 Replies
Jaydee1507 profile image
Jaydee1507Administrator

The thing that stands out to me is that your active B12 is at rock bottom. Are you a vegetarian or Vegan? Do you have symptoms of B12 deficiency?

theb12society.com/signs-and...

MrsMark profile image
MrsMark in reply toJaydee1507

I'm not either but I am dairy and gluten free. Before taking the samples I was told to stop all vitamin tablets, so I did. Usually I take a multivitamin every day which helps.

I don't have many of the symptoms of B12 deficiency aside from what I've noted above. I do get irritable but I've always been irritable! ; )

Jaydee1507 profile image
Jaydee1507Administrator in reply toMrsMark

We don't recommend multivitamins here as they never contain enough for a true deficiency, usually poor quality, also contain vitamins that prevent absorption of other vitamins. Better to target specific levels that you know are low.

You should get checked out for PA with levels like that of B12. See GP or Endo.

Are they going to run the folate again? You need that result.

Vit D is slightly low. Buy some D3 with K2 and work out how much to take to get it optimal, around 100. grassrootshealth.net/projec...

Free T4 (fT4) 22.9 pmol/L (12 - 22) 109.0%

Free T3 (fT3) 4.73 pmol/L (3.1 - 6.8) 44.1%

Your thyroid results are inbalanced. Obviously if you reduce levo you will need more T3 to make that up. Reduce levo for a week then add in small amount T3.

MrsMark profile image
MrsMark in reply toJaydee1507

Okay, I will speak to my endo and hopefully she can change the t4/t3 ratio.

I will look into separate vitamins too. I’ve also just sent off a full screening as part of my medical insurance review so I’ll share results when they come in.

Thank you so much for replying, I really appreciate it x

SlowDragon profile image
SlowDragonAdministrator

You need testing for Pernicious Anaemia by GP or endocrinologist

B12 is absolutely dire

Any active B12 result below 70 is too low

ESSENTIAL to test B12 and folate together

Are you taking any other medications apart from thyroid hormones?

MrsMark profile image
MrsMark in reply toSlowDragon

Yes, 1ml (the very small dose) of Low Dose Netroxine (not sure how you spell it)?

Is my T4 too high? I was wondering about trying just T3 only?

MrsMark profile image
MrsMark

Thank you both very much for replying x

SlowDragon profile image
SlowDragonAdministrator in reply toMrsMark

Suggest you stay on current dose levothyroxine/T3 and most importantly get vitamins back to optimal levels

MrsMark profile image
MrsMark in reply toSlowDragon

Okay, that’s a good plan.

SlowDragon profile image
SlowDragonAdministrator

Low B12 symptoms 

b12deficiency.info/signs-an...

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

if folate is also low it’s ESSENTIAL that B12 is started BEFORE folate is started

en.wikipedia.org/wiki/Subac...

It is vital if you need to supplement both B12 and folate that B12 is started a week before the folate.

en.wikipedia.org/wiki/Subac...

MrsMark profile image
MrsMark in reply toSlowDragon

Aside from feeling tired and having slight shortness of breath going upstairs (a parting gift from my covid/pneumonia episode), I don’t have any of those symptoms.

SlowDragon profile image
SlowDragonAdministrator in reply toMrsMark

GP still needs to do full testing

MrsMark profile image
MrsMark in reply toSlowDragon

I went to my GP with a list of symptoms, told him how unhappy I felt with my T4 only medication, suggested a link between covid/pneumonia and my meds not working now. He said, and I quote, “never mind”.

I will ask my endo if she can do more bloods and I’ll do another sample for ferritin. Getting blood out is almost impossible, I need two helpers and someone to cut my finger!

SlowDragon profile image
SlowDragonAdministrator in reply toMrsMark

Do you have folate result

Did you actually give GP these results

Active B12 is below range

You need to insist on testing for Pernicious Anaemia

Email practice manager and request guidelines are followed

Ask advice about below rating Active B12 and folate result on

healthunlocked.com/pasoc

Explain that your GP won’t to any testing or treatment despite below range B12 result

MrsMark profile image
MrsMark in reply toSlowDragon

No, my sample was insufficient for a folate test so I’ve got another one coming shortly. Haven’t given my GP these results, he seems very disinterested but I will speak to the practice manager and ask for the tests.

Thank you very much for your advice and for taking the time to reply, I really appreciate it.

SlowDragon profile image
SlowDragonAdministrator in reply toMrsMark

I would definitely give these blood test results to GP first

GP should be given the chance to do the right thing

Email in Active B12 result and include range on test result

Explain you haven’t got folate result

Request could GP please test B12 and folate on NHS

NHS never test active B12 so GP won’t be use to seeing this result or ranges

An active B12 result below 70 is too low and requires investigation

MrsMark profile image
MrsMark

I will do that today, thank you very much. Would low B12 make me feel sad?

SlowDragon profile image
SlowDragonAdministrator in reply toMrsMark

we need good vitamin levels to convert Ft4 to Ft3

Your Ft3 is low in comparison to Ft4

Ft3 is the active thyroid hormone

Low Ft3 will make you feel hypothyroid.

One of most common symptoms of hypothyroidism is anxiety and/or depression…..so yes …in effect

Improving all vitamins to optimal will increase Ft3 and reduce Ft4

Aiming for Ft4 and Ft3 approx 70% through range

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Vitamin D also needs improving

Folate quite likely low too

MrsMark profile image
MrsMark in reply toSlowDragon

I’ve never seen such a comprehensive list of symptoms. I stopped counter after I ticked off 60 😔

Okay, I have some work to do to get myself to optimal.

I’ll speak to my Dr, get blood tests and get a clear picture. In the meantime, I’ll have a look at my diet (I’m gluten and dairy free) but I don’t eat much meat. I’m not brilliant with green veg either, will work on that.

I have an appointment with my endo on the 8th, I’ll ask if I can increase my T3, maybe reduce T4 depending on what she says.

I’ll get the separate vitamins depending on what is actually required and start on them as soon as I’ve done my last set of blood tests.

Thank you so much, I don’t know how you find the time to reply with such detailed information but I’m very glad that you do. Have a lovely day, Emma

SlowDragon profile image
SlowDragonAdministrator in reply toMrsMark

Many of us need to self supplement vitamin D, magnesium, vitamin B complex continuously to maintain optimal vitamin levels

Especially if dairy and gluten intolerant

But your B12 is exceptionally low

So really should be tested for Pernicious Anaemia before starting either B12 injections (most likely) or daily B12 supplements

(Don’t think B12 contains nickel)

And adding a separate Vitamin B complex a week after starting B12

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