Getting somewhere maybe: Hi folks its been a... - Thyroid UK

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Getting somewhere maybe

a5hl3y2208 profile image
19 Replies

Hi folks its been a while since i last posted. This time last year i saw the Dr as i was desperate to loose weight to lower my BMI to under 30 to be entitled to surgery to look into why i was not conceiving naturally, the Dr i saw is a locum and is what i feel to be a breath of fresh air in the thyroid dept. He upped my levo to 150mg and i lost a stone and a half by some miracle and so could have my surgery. On this dosage i felt great and so convinced my usual Dr to allow me to continue on this dosage. In September i had my op but have felt utterly rubbish since with being tired and having zero energy working a full day is hard enough without trying to throw going to the gym into the equation. The weight has stayed off but i am unable to loose any more and i seem to have become significantly hairy on my face which seems to be something to add to my list of never ending problems. I digress i managed to get in to see the helpful locum again and he suggested i have some bloods done which i shall post the results below. Bloods came back and by some miracle i got the locum again and he has suggested to put me on Liothyorine and stop my levo. At this point i am thinking fantastic praise the lord as i know many people fight for years for this result. So today after the chemist had much difficulty in ordering the meds i collected my T3 but there is no dosage on it i have 56 20mcg tabs. Do i take 2 a day? should they be taken at the same time or at different intervals? Asked my Drs receptionist but they said there was nothing on my notes other than to re-test T3 bloods in 3 weeks. I am really excited that these tabs are going to make me feel like a new woman but also scared that as soon as a feel good they will take them away from me.

recent bloods where

TSH receptor antibody level <0.4 U/L

thyroid peroxidase antibod lev 58kU/L

serum free T3 level 2.40 pmol/L

serum TSH level 0.37mU/L

serum free T4 level 14.8pmol/L

serum total cholesterol level 6.5 mmol/L

serum LDL cholesterol level 4.4 mmol/L

vitamin B12 527 ng/L

folate 4.5 ug/L

ferritin 28 ug/L

they dont appear to have done my vitamin D even though i requested it but i do take 2000 iu osteocap everyday prescribed by my endocrinologist a few years ago. Dr did mention to me once that they very rarely test vitamin D as its a very expensive blood test?!

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19 Replies
SeasideSusie profile image
SeasideSusieRemembering

Can you please add the reference ranges to your results so they can be interpreted accurately. There are some pretty poor looking levels there.

a5hl3y2208 profile image
a5hl3y2208

TSH receptor antibody level <0.4 U/L

(<0.4)

thyroid peroxidase antibod lev 58kU/L

(<59)

serum free T3 level 2.40 pmol/L

(2.89-4.88)

serum TSH level 0.37mU/L

(0.40-5.00)

serum free T4 level 14.8pmol/L

(9.0-19.0)

serum total cholesterol level 6.5 mmol/L

(<5.0)

serum LDL cholesterol level 4.4 mmol/L

(<3)

vitamin B12 527 ng/L

(150-620)

folate 4.5 ug/L

(3.1-19.9)

ferritin 28 ug/L (15-200)

i hope this helps

a5hl3y2208 profile image
a5hl3y2208 in reply to a5hl3y2208

hi guys thanks for all your help just out of interest what would you suggest would be the optimum levels for all the blood tests results i gave plus Vit D just so i have something to aim for? I know you have probably told me this but i really struggle retaining anything at the moment and find it all very confusing. I also asked another Dr about what he suggested the dosage be of the Liothyorine. His response was it was absolutely disgraceful that i be given £500 pounds worth of medication when all T4 gets converted into T3 by the body naturally and that is why T3 should not be given as it is a pointless medication and that is why they are stopping supplying it. He then suggested i not take the T3 at all and to have another ref to endo (seen 2 both utter useless either told me i am fine or that i need to loose weight and my symptoms will get better). Told him i feel utter rubbish and struggle to even get through a full working day let alone anything else and that i am crying all the time over absolutely nothing, muscle aches, ETC. He said oh i think you look really well!!! Feel like hitting my head against a brick wall. In the end i took 100mg of levo this morning instead of 150 and had half a 20mcg Liothyorine.

Aurealis profile image
Aurealis

There are different conversion ratios out there but 20mcg T3 being equivalent to 100mg of Levo is what I used. I started by replacing 100 Levo with T3 but my endocrinologist played safe by reducing Levo by more than the T3 added. I split tablets and took it in two doses about 7 hours apart

So perhaps Locum means you to take 20mcg T3 instead of the Levo you’re currently taking? I didn’t find that T3 caused an immediate improvement on day 1 - it took about three weeks before I started to feel better, and then I had to reduce it. So be patient. I didn’t feel well on T3 only, either. Good luck, hope it works for you x

a5hl3y2208 profile image
a5hl3y2208 in reply to Aurealis

i really have no idea maybe i will start with just taking 1 tablet for a week and go from there. Oh no such a mind field all this i am pretty sure i felt better before i was diagnosed and taking anything. Hopefully one day we will all get there :)

Marz profile image
Marz

You are not converting the good dose of Levo due to very low Ferritin. It needs to be around mid-range or at least 70. This could hamper your T3 medication too ... Also Folate needs to be mid-range.

Are you taking any other medications or supplements that could be hampering the uptake of T4/Levo ? We need the building blocks in place in order to create our temple of wellbeing :-)

a5hl3y2208 profile image
a5hl3y2208 in reply to Marz

hi yes i am taking

osteocaps vit D 2x 1000iu per day

swanson ultra methylcobalamin 5mg per day

swanson ultra folate 800mcg per day

swanson iron 18mg per day

natures aid vitamin C 1000mg per day

not sure what time or order to take though for optimal absorption

Marz profile image
Marz in reply to a5hl3y2208

Iron needs to be taken at least 4 hours away from your dose of Levo to prevent mal--absorption of T4. When do you take your Levo ? Do the Osteocaps contain calcium ? - why are you taking those ? - perhaps they contain VitD ??

a5hl3y2208 profile image
a5hl3y2208 in reply to Marz

the osteocaps are a vitamin D supplement and i take my levo first thing in a morning about an hour or so before food, the vit D i take before bed and the rest i take after my lunch as most supplements make me feel queesy on an empty stomach :)

Marz profile image
Marz in reply to a5hl3y2208

VitD is best taken with your fattiest meal as its fat soluble ...

SlowDragon profile image
SlowDragonAdministrator

I really think you need to sort your low ferritin level. All vitamins really need to be optimal first. Ferritin should be half way in range. Eating liver once a week should help

Also essential to test vitamin D

Vitamindtest.org.uk £28 postal kit

You don't need to stop your Levothyroxine. Usual advice is to reduce slightly (by 25mcg ) if Levo is at top of FT4 range.

Certainly don't just stop 150mcg one day and take 20mcg or, even worse 40mcg T3 - that's madness and likely make you extremely unwell, possibly dangerously so.

Should only ever add a SMALL dose of T3 initially.

Usual recommendation is a quarter of a tablet in morning, and (if no bad reaction) a quarter of tablet in afternoon.

Hold at this dose for 6 weeks and retest, before even thinking of increasing.

Essential to take same dose everyday

Sorry to say your locum is underlining exactly why NHS says T3 should only be prescribed by endocrinologist. To hand out a prescription with no advice on how to dose is quite frankly, extremely dangerous

a5hl3y2208 profile image
a5hl3y2208 in reply to SlowDragon

hi guys thanks for all your help just out of interest what would you suggest would be the optimum levels for all the blood tests results i gave plus Vit D just so i have something to aim for? I know you have probably told me this but i really struggle retaining anything at the moment and find it all very confusing. I also asked another Dr about what he suggested the dosage be of the Liothyorine. His response was it was absolutely disgraceful that i be given £500 pounds worth of medication when all T4 gets converted into T3 by the body naturally and that is why T3 should not be given as it is a pointless medication and that is why they are stopping supplying it. He then suggested i not take the T3 at all and to have another ref to endo (seen 2 both utter useless either told me i am fine or that i need to loose weight and my symptoms will get better). Told him i feel utter rubbish and struggle to even get through a full working day let alone anything else and that i am crying all the time over absolutely nothing, muscle aches, ETC. He said oh i think you look really well!!! Feel like hitting my head against a brick wall. In the end i took 100mg of levo this morning instead of 150 and had half a 20mcg Liothyorine.

a5hl3y2208 profile image
a5hl3y2208

thats really helpful thank you maybe i will just have to force my self to swallow some liver whole as it really is the most disgusting thing i have ever tasted. i will take your advise with the T3 also

SlowDragon profile image
SlowDragonAdministrator in reply to a5hl3y2208

Liver pate is perhaps not so awful?

Or hide in a casserole or shepherd pie

Personally I love liver!

a5hl3y2208 profile image
a5hl3y2208 in reply to SlowDragon

and pumpkin seeds apparently i will try the hiding it in a pie thank you

fibrolinda profile image
fibrolinda

Iron is really low and personally I think b12 better at nearer 1000. How long have you been taking the swanson iron tablets? To get my iron up I took 3x 210 ferrous fummerate (60-65 iron each tab) daily for four weeks, the two daily for four weeks then one daily for several weeks till ferritin got up to 79. Each one with 1000vit c to prevent constipation.

a5hl3y2208 profile image
a5hl3y2208

Great thanks

a5hl3y2208 profile image
a5hl3y2208

hi guys thanks for all your help just out of interest what would you suggest would be the optimum levels for all the blood tests results i gave plus Vit D just so i have something to aim for? I know you have probably told me this but i really struggle retaining anything at the moment and find it all very confusing. I also asked another Dr about what he suggested the dosage be of the Liothyorine. His response was it was absolutely disgraceful that i be given £500 pounds worth of medication when all T4 gets converted into T3 by the body naturally and that is why T3 should not be given as it is a pointless medication and that is why they are stopping supplying it. He then suggested i not take the T3 at all and to have another ref to endo (seen 2 both utter useless either told me i am fine or that i need to loose weight and my symptoms will get better). Told him i feel utter rubbish and struggle to even get through a full working day let alone anything else and that i am crying all the time over absolutely nothing, muscle aches, ETC. He said oh i think you look really well!!! Feel like hitting my head against a brick wall. In the end i took 100mg of levo this morning instead of 150 and had half a 20mcg Liothyorine.

SlowDragon profile image
SlowDragonAdministrator in reply to a5hl3y2208

Better to take the half tablet (10mcg) as 5mcg in morning and 5mcg in afternoon.

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