Where to buy T3 / b12 level too high? - Thyroid UK

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Where to buy T3 / b12 level too high?

Essexmum profile image
13 Replies

Hi, I've been diagnosed with underactive thyroid since 2010. At this time my weight increased, I was losing my hair, tearful, tired etc etc. I was put on levothyroxin but felt no different. My doctor prescribed armour thyroid which helped initially but I continued to feel unwell & The doctors at my surgery kept saying my blood tests were normal. Last year I ended up in a&e with heart pain, tremors and nerve pain. I had been forced into a hyperthyroid state. I'm now under an endocrinologist who brought my dosage down slowly and I found I felt alive for the first time in years. My doctor agreed to b12 injections as I was crying so much with the nerve pain. My b12 level was 297 and the range was 197-771. I have just had my blood tests and my b12 level is 2000. I believe this is normal for those who have b12 injections for nerve pain. I originally had the loading doses last year which made such a difference & I have injections every 12 weeks. The nurse has queried whether I should still have the injections. Is the level ok and when is a b12 level too high?

Like others I am not feeling well on levothyroxin and will be seeing a consultant privately for T3 medication. My NHS endocrinologist suggested I do this due to my symptoms. My levels are:

Serum TSH <0.05 range; 0.27 to 4.20

Serum free T4 = 21 range; 12 to 22

T3 level; 4.2 range; 3.1 to 6.8

I have seen the link on thyroid UK to obtain Thybon T3 from Germany with a prescription. I would be pleased if someone could message me some guidance on brands of T3 and where to buy as I am in the UK & the prices are extortionate.

I now ask for copies of my blood tests having learnt the hard way that our doctors don't know that much about thyroidism. I am on vitamin d and folate & my blood tests show my iron is in the normal range but at the lower end. I am grateful for everyone's questions and answers on this site as I realise I am not alone and imagining my symptoms. Interestingly, since changing to levothyroxin my T3 level has dropped from 6.7 to 4.2 (range3.1 - 6.8) which I presume is the reason for my symptoms returning along with weight gain.

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Essexmum
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13 Replies
TheaW profile image
TheaW

Hi there. I feel for you. I will pm you some links my doctor gave me for t3 although may take me a day or two. As for b12 my doctor said you can never have too much and blood test results depend almost entirely on when you last had your injection so it’s best to go on how you feel. Good luck x

Essexmum profile image
Essexmum in reply toTheaW

Thank you, that will be helpful to have some links. I feel good with B12 injections as before I had nerve pain all over, muscle spasms and I was very breathless. This all started to subside with the b12 injections and on the last dose of the loading injections the pain was gone, so I think I keep with the B12 injections as I don't want to go back there.

Thank you for your help.

TheaW profile image
TheaW in reply toEssexmum

Also you can self inject b12. My doctor sent me details I brought it from Germany and she told me what needles I needed and how to self inject. I was doing them every week but now do it every month. nHS will only ever do it every 3 months. But I can’t harm you having more apparently

SlowDragon profile image
SlowDragonAdministrator

You need to also test vitamin D, folate and ferritin before considering T3

These need to be at good levels as well as the B12 in order for thyroid hormones to work

Do you have Hashimoto's also called autoimmune thyroid disease,diagnosed by high thyroid antibodies?

Your blood test shows poor conversion of FT4 to FT3

What other supplements do you take?

Tile profile image
Tile in reply toSlowDragon

To Essexmum. You need iron at the high end.of the range for converting T4 to T3. You need T4 to convert B2 to the active B2 called FAD. You need FAD for energy and absorbing folate. Never take T3 without some T4. T3 can lower T4 and TSH.

Essexmum profile image
Essexmum in reply toTile

Thank you Tile, I'm going to try the iron sachets to increase my level. I'm really feeling unwell at the moment so that will help. I wasn't aware T3 can lower T4 and TSH, good to know.

Judithdalston profile image
Judithdalston in reply toEssexmum

Weirdly adding T3 can also lower FT3 ...I added T3 to levothyroxin 10 weeks ago as always been poor converter - 25 mcg T3 to reduced dose levo.from 133 mcg down gradually to 75 mcg. But recent blood tests show TSH dropped from 0.175 to 0.015; FT4 from 22.60 to 12,70 but also FT3 from 4.72 to 4.57. Some members have suggested I have to up my T4, despite the fact you will find many add T3 without problems by replacing 25 mcg levo with 10 mcg T3 pro rata.

Essexmum profile image
Essexmum in reply toJudithdalston

That's good to know this can happen. My endo was keen to reduce my levothyroxine until a blood test reveals a normal TSH level but has since said will keep me on same dose due to hypo symptoms. Others advice to up your T4 sounds sensible. I guess it is trial and error to find the correct dose that suits you. I hope my T3 level doesn't drop any further! My appointment with a private endo for T3 is tomorrow so I can discuss this as well.

Essexmum profile image
Essexmum in reply toSlowDragon

Hi SlowDragon, Thank you for your input. My antibodies are in the normal range, so not Hashimoto's I presume. My doctor prescribed Vitamin D last year and I take 1 x 800IU capsule. It's been over a year now and my level is 66.3nmol/L which is just in the adequate range; 50-75.

I am also on folic acid and my folate level is <20ng/ml and the range is 3.9 to 26.8.

I am starting iron tablets today as my Ferritin level is 50ng/ml and the range is 13 to 150 and the nurse has advised I start taking an iron supplement.

I don't take anything else and the NHS endocrinologist said she will monitor me if I go to a private consultant for a private prescription of T3, so the aim is to take T4 & T3. I believe my T4 is too high as the TSH is below 1. I may need to lower my dose of levothyroxine as I currently take 125mcg one day and 100mcg the next, so alternating the dosage.

Thank you for advising my results show poor conversion.

SlowDragon profile image
SlowDragonAdministrator in reply toEssexmum

How low was vitamin D last year. 800iu is tiny dose.

oxfordshireccg.nhs.uk/profe...

Vitamin D is too low. Dose needs increasing. Aiming to improve to around 100nmol.

Vitamin D mouth spray by Better You is good as avoids poor gut function. It's trial and error what dose each person needs. At least 2000iu probably

Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

articles.mercola.com/sites/...

betterbones.com/bone-nutrit...

easy-immune-health.com/magn...

Essexmum profile image
Essexmum in reply toSlowDragon

Hi SlowDragon, My vitamin D level last year was 30 nmol/l and was insufficient. I was surprised to see my level was only 66. Thank you for the links and the guidance as I now realise I have to take responsibility for my own health as the doctors have not done much for me over the past 7/8 years. I do have muscle and bone pain and the endo is arranging a bone density scan. I'll definitely look at increasing this and the K2 / MK7. There's more to this as having been forced into a hyperthyroid state for a number of years, I now have kidney stones, polyps on my gall bladder and cysts on my liver. I really appreciate the help, thank you.

SlowDragon profile image
SlowDragonAdministrator in reply toEssexmum

It's more common to be under medicated

If you didn't routinely have FT3 tested and vitamins tested and supplemented, it's more likely you were poor converter of FT4 to FT3 and actually hypothyroid but with high FT4 and suppressed TSH

Many people, especially with Hashimoto's are poor converters and just prescribing Levothyroxine is inadequate

Took me over twenty years to get correct treatment, see my profile. That's not unusual, many, many similar cases on here

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 otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

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

Low vitamins suggest under medicated and/or gluten intolerance

Essexmum profile image
Essexmum in reply toSlowDragon

Thank you so much SlowDragon for your help. I work full time & have a 9 year old son and like many I guess, i'm struggling every day.

I have bought the iron sachets & the vitamin d spray you suggested and I'll be getting the k2 & mk7.

I do feel for you to go so long without the right treatment, you must have gone through so much & I know how it affects your life.

I will also email for a copy of the article, this can only help, although I try to see the nurse practitioner as opposed to the doctor as he's not very helpful shall we say.

I have a private endo appointment tomorrow evening and I can then order the T3. I'm hoping I can start to feel better soon.

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