help!!!

[Tpink123]

so here’s a record of my high TSH level. For past year. Which has raised my cholesterol level so high that I had a heart attack in February. The response from the endo team. You are not taking your medication having a high TSH dose not have any symptoms!!! Will not affect your cholesterol!!! Therefore I’ve spoken to team whom all say your not taking your medication correctly!! Which is 199% not the case. I had a total thyriodacomany 20 years ago. She said I’ve never seen this before so I’m going to remove you from our list and refresh you to a different hospital. I feel like banging my head against the wall someone please help me!!!

[SlowDragon Ambassador]

looking at previous posts

It appears You have had lots of huge dose changes in Levo

Dose should be adjusted SLOWLY upwards ….and especially if dose is reduced……change by 25mcg and retested 6-8 weeks after each dose or brand change

ALWAYS test early morning and last dose levothyroxine 24 hours before test

Please type up new a list with

Date of each test

Dose Levo at the test

Which brand……wether tablets or liquid

And results

[Tpink123 in reply to SlowDragon]

I will do that for you tomorrow I’m on level thyroxine 225mg

I was tried on liquid but seemed to raise it higher so been put back on tablets

[Jaydee1507 Administrator]

How do you take your Levo?

Levo is an extremely fussy hormone and needs to be taken on its own, on an empty stomach an hour before anything other than water.

[Tpink123 in reply to Jaydee1507]

That’s what I do I’m so good at taking it

[Jaydee1507 Administrator in reply to Tpink123]

Approx how much do you weigh in kilos.

What was happening that was different in March & July when your results were better?

[Tpink123 in reply to Jaydee1507]

My dose gets reduced or upped then it’s ok for a bit then just goes off the wall. I weigh 12 stone 4

[Jaydee1507 Administrator in reply to Tpink123]

So by weight you would need 125mcgs Levo approx.

78 (kg) x 1.6 - 125

There must be some sort of absorption issue going on.

Have you been checked for coeliac?

Try taking levo at bedtime.

[SlowDragon Ambassador in reply to Tpink123]

12 stone 4lb = 78kilo

Suggested daily dose of 1.6mcg per kilo would be

78 x 1.6 = 124mcg per day

When was dose increased to 225mcg

What was dose prior to that

Taking significantly higher dose suggests malabsorption issues

Examples of malabsorption causes…..

Coeliac

H Pylori

SIBO

in-depth research article on this

academic.oup.com/edrv/artic...

Absolutely ESSENTIAL to test TSH, Ft4 and Ft3 together

And test vitamin D, folate, B12 and ferritin at least once a year

[Tpink123 in reply to SlowDragon]

I was taking 200mg the does was increase 3 weeks ago to 225 mg

[SlowDragon Ambassador in reply to Tpink123]

Do you always test early morning and last dose Levo 24 hours before test

And do you always get same brand of Levo

If yes….which brand

[Tpink123 in reply to Jaydee1507]

I take 225 mg

[Hectorsmum2 in reply to Tpink123]

I cant see the ranges on your bloods but it looks like your T4 was really high in July.

Is that right and is your T4 still high?

[bikebabe]

I believe you!! But it’s a puzzle that needs some detective work to identify why you’re not absorbibg/convertibg. What other meds for cardiac issues have you been having over past year? Eg amiodrone causes problems for thyroid. What supplements and when? Are your vitamins at right level? When do you take thyrozine and with what ie all together or spaced out so nothing for 2 hrs before/ after? Persevere and contact PALS teammates if you feel the medics aren’t listening. Is your GP helping you?

[Tpink123 in reply to bikebabe]

Omg thank you you are the first person to say I believe you thank you yeah I take it on empty stomach. Don’t take any supplements. Yeah I’ve put in a complaint my dr only just now has started to listen to me after I put in a complaint

[annnsandell]

Astonishing Endo treatment, even I can see that you have absorption and conversion problems and they are putting your life at risk. Do you have a sensible GP you can talk this over with and get an urgent referral elsewhere? Good luck.

[Tpink123 in reply to annnsandell]

Yah he is amazing now after I complained thank you

[Litatamon]

I have been accused of not taking my hormones, when I take them properly & religiously. I just give it back to them. At one point I had a TSH of 33. I had high TSH on both levothyroxine & NDT. Was three and a half grains of NDT with that 33. Total thyroidectomy as well. Hope you get it figured out soon & all the best to you.

[Tpink123 in reply to Litatamon]

Thank you so much x

[Polo22]

Hope you get someone to really listen and hope things improve for you. I have in past had some really strange numbers on Thyroid bloods. Got my medical history from GP after asking for SAR. Haven't fully got through them as life keeps being, erm, interesting what I did notice is that on some results where numbers didn't add up TSH high but T4 good or TSH suppressed and T4 in my boots and labs comments always "Query patient concordance" only recently since coming here I have done fair bit of private testing and seems I have conversion problem. Still at least you have a GP who is willing to listen even if he needed a kick up the bum.