Not converting? How do you know? How do you feel? - Thyroid UK

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Not converting? How do you know? How do you feel?

maplewood profile image
17 Replies

Hi all. My GP has started me back on T4 due to last bloods. This is been done even though I have consistently said from day one it does not agree. I thought i would give it a try however because i have now reached menopause and wondered if it would be easier for me with flushes etc all settled. The side effects with the levo are still the same for me as before even though i have been splitting a 25mg dose in half daily. Roasting hot and sweating to the point it is miserable and not tolerable. Air hunger/sob especially on a night. I have had to put my ceiling fan back on whilst in bed as it helps me cope with air waffing around but did not have to put it on whilst off meds. Nights worse as roasting hot duvet on/off all night, again wasn't happening without meds, and more tired during the day. Can the levo bring the menopause back? Are these symptoms of not converting? or are these just the levo side effects. The longer the time goes on and the more i have to take the worse i become with panic attacks, worsening shortness of breath and hot/sweating etc. Is T3 really going to be a better option or will the side effects be the same? I need to understand the not converting part because i feel after giving levo enough tries it isn't going to work for me ever. As you will know by previous posts endo wont give me T3 until TSH at 10 so i am going to have to pursue privately. Am i missing something is there anything else i can consider. Thank you x

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maplewood
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17 Replies
tattybogle profile image
tattybogle

have you tested your vitamin b12 / vit D / Folate / Ferritin levels and dealt with any that are low ?

the only way to asses how good/ bad your conversion from T4 to T3 is, is by looking at your fT4 and fT3 test results .

everybody converts some T4 to T3 ~ if they didn't they'd be dead ~but some do it more efficiently than others.

maplewood profile image
maplewood in reply totattybogle

My b12 levels came back at 176 range 115/1000. I thought that could be low but GP says fine. I started taking b12 supplements but within a few days i started tingling all over. I read on here that was of but then on the NHS web site it says stop taking if you are tingling as you don't need it. Confused.com

helvella profile image
helvellaAdministrator in reply tomaplewood

If checking B12 level was as easy as taking a supplement and seeing if you tingle, I don't think Schilling would have developed the Schilling test! (No longer available - but was the most significant and reliable test if done properly.)

That B12 test reference interval is unusually wide and has a very low bottom end.

If you are deficient in B12, then taking it will allow things to work that had not been functioning properly. That can include various odd feelings.

Have you had a Full Blood Count?

maplewood profile image
maplewood in reply tohelvella

Yes they did one ferritin 54 range 20/100 and folate 16.4 3ug suggests deficiency. I personally thought that b12 was low.

SlowDragon profile image
SlowDragonAdministrator in reply tomaplewood

B12 is far far too low

What are folate, vitamin D and ferritin results and ranges

Sounds like you have Low B12 symptoms 

b12deficiency.info/signs-an...

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

Ideally GP should test for Pernicious Anaemia before starting on replacement B12 and vitamin b complex

But doesn’t sound like GP is amenable

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and about a week after starting B12 adding a good quality B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week 

These B12 drops are highly effective

healthunlocked.com/thyroidu...

or

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...

Vitamin B complex

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-...

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) 

Thorne currently difficult to find at reasonable price, should be around £20-£25. Try iherb.com

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 separate B12

My b12 levels came back at 176 range 115/1000. I thought that could be low but GP says fine

technically NHS only obligated to treat vitamin deficiencies but this B12 result is extremely low.

On levothyroxine we MUST have optimal vitamin levels

Frequently down to us to self supplement

maplewood profile image
maplewood in reply toSlowDragon

Hi my recent ferritin 54 range 20-100 and folate was 16.4 it says 3ug suggest deficiency. I am looking at just B12 then but looking at b complex now. Brilliant thank you.

SlowDragon profile image
SlowDragonAdministrator in reply tomaplewood

So ferritin is also on lower side

Are you pre or post menopause

Look at increasing iron rich foods in diet 

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin 

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin 

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron 

Medichecks iron panel test 

medichecks.com/products/iro...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid 

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron 

healthline.com/nutrition/he...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

Low Iron implicated in hypothyroidism 

healthunlocked.com/thyroidu...

Ferritin range on Medichecks 

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

SlowDragon profile image
SlowDragonAdministrator in reply tomaplewood

Vitamin D result?

NHS private testing service

vitamindtest.org.uk

SlowDragon profile image
SlowDragonAdministrator in reply tomaplewood

Starting on just B12

Then adding vitamin B complex after 2-3 weeks

Retest in 6-8 weeks when you retest thyroid levels

maplewood profile image
maplewood in reply toSlowDragon

Crikey a lot to take in there. The GP will not do vitamin D but yes i will get it done privately. I didn't realise ferritin was a bit on the low side. I need to focus on getting well i am sick to death of it. Thank you for the info i will keep reading x

SlowDragon profile image
SlowDragonAdministrator in reply tomaplewood

Which brand of levothyroxine have you currently got

Many people find different brands are not interchangeable

Teva brand especially upsets many people

What are most recent thyroid results BEFORE starting back on levothyroxine

maplewood profile image
maplewood in reply toSlowDragon

Hiya, i have just been telling jaydee1507 i have just had a SIBO diagnosis. Therefore the low b12 and other vitamin deficiencies will not be helping. I am only on 25mg of levo at the moment but i seem to be tolerating better. I have also bought some b complex and started b12 and vit d. I am going to be starting antibiotics for SIBO shortly and he is going to look if there is any reason i should have it (i had my gallbladder removed so that wont help, but neither will the sluggish thyroid). I finally feel like i am heading in the right direction.

birkie profile image
birkie in reply toSlowDragon

slowDragon can I ask are those B12 drops gentle on the stomach?My B12 was 172 and my GP said it's within normal range, I've tried the B12 spray better you but found it gave me stomach issues very much like with the vitamin D better you spray.

My vitamin D is 43 done last year I've not taken any vit d supplements for over a year now I'm throwing money away as I have stomach and bowle issues with everything I've tried..GP says insufficient not deficient but recommended vit d drops 🤷

SlowDragon profile image
SlowDragonAdministrator in reply tobirkie

Try the B12 drops

natureprovides.com/collecti...

Initially just 2-3 drops

Then slowly increase if that’s fine

They also do vitamin D drops.

sorry to hear you feel like this, this is exactly how I felt on T4 when my adrenals were in trouble. Increasing shortness of breath, terrible doom all the time, couldn’t lose weight, bloated, tinnitus… it was awful. I think you should start by testing your cortisol, as opposed to jumping to T3. You’re best doing that via saliva. X

Jaydee1507 profile image
Jaydee1507Administrator

This is how I was and worse when trying to restart levo after a short break. Have you tried lactose free Levo in liquid form? GP will likely balk at the price but you could also then go up in very small stages drawing the liquid up in a syringe to measure it. I believe these are just hypo symptoms that are revealed when you begin Levo, not to do with not converting. Your low B12 won't be helping either.

Also to add, I think this may be something you have to go through to come out the other side better. Some of us are just more sensitive to thyroid hormones. Have you tried gluten/dairy free? Could help.

maplewood profile image
maplewood in reply toJaydee1507

Hiya, yes i am now gluten free i am also going to try lactose free. I have just found out though this weekend i have SIBO and am going to be treated for it. To be honest i think i may finally be cracking it, as apart from the hot sweats on a night i am tolerating better. I am so excited to think i could finally be heading in the right direction. x

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