Thrown a Curve Ball with my daughters latest results. Advice please...

[KIRM]

My daughter on 100mcg T4 daily for 3 years. Endo thought she wasn't converting to enough T3 so for 4 months she has been on 100mcg T4 and 10mcg of T3. These are her first results since introduction of T3.

Her TSH has gone from 0.98 to 2.50, (was 3.5 when first diagnosed). FT3 has gone down and T4 has never been low enough to be out of range. Her TPO Ab has gone through the roof along with her Antithyroglobulin.

She supplements with B12 spray, B Complex, Vit D, Ferrous Fumerate, Selenium and Magnesium. Vit C with her thyroid meds.

What has gone wrong? Did she never need the introduction of T3, could this have caused these elevated results?

So grateful, as always, for any advice.

(Still waiting for Vit D and Folate results to come in, but last reading was Vit D 118 and Folate Serum 11)

TSH 2.50 ( 0.43 - 4.20 )

Free T3

3.62 ( 2.80 - 6.30 )

Free T4

8.87 (10.10 - 17.90)

TPO Ab 113 (0 - 26)

Antithyrogloublin Ab 718 (0 -115)

Ferritin 58 (20-200)

Vitamin B12 379 pmol/L

( 155 - 693 )

[shaws]

Did your daughter have these blood tests at the very earliest possible, fasting and a 24 hour gap between last dose of thyroid hormones and the test?

[KIRM in reply to shaws]

Thank you for replying...

She had a 48 hour break from meds, she did fast and have her bloods taken at 9am.

[SlowDragon Administrator in reply to KIRM]

That's too long

24 hours for T4 and 12 for T3

[KIRM in reply to SlowDragon]

Ok thanks, so 48 hours could well have given these worrying results, especially when we thought we were slowly going in the right direction?

[SlowDragon Administrator in reply to KIRM]

Does she feel better with T3 added?

[KIRM in reply to SlowDragon]

To be honest to anyone who doesn't know her she looks totally 'fed up' and she is still so tired. I know she has a lot on with A Levels but she had very little spark/energy

[shaws in reply to KIRM]

Hopefully, after a few days on her dose she will begin to feel an improvement. Her combined dose of 100mcg levo plus 10mcg T3 is approx 130mcg of levo, so not a particularly high dose.

[KIRM in reply to shaws]

Thank you

[Saggyuk in reply to KIRM]

Yes, my levels go down quite fast after 10 hours of not taking my T3 so yes, results would have been artificially lower.

I agree with slowdragon and highly recommend a GF diet - made a huge difference to me. It has to be 100% gluten free including cross contamination and for at least three months to see if any improvements start to occur - sometimes longer. You can read up on cross contamination and anything else you need to know about a GF diet on the coeliacsuk website.

You might find resolving this may help with her low thyroid levels, tiredness and conversion and stop other sensitivities anyway. It did with me.

Take the vit C with the iron rather than the levo as vit C helps absorb the iron and helps stop the iron bugging your tummy so much. Thyroid meds should be taken away from food with water and two hours away from other supplements and then wait at least half hour before eating.

Hope she feels better soon

[KIRM in reply to Saggyuk]

Thank you so much for taking time to offer some much needed advice. It has and will be a continual learning process but am anxious to get her as stable as possible before she goes off to Uni, I have just under 2 years!!!

[Saggyuk in reply to KIRM]

Well you're doing all the right things so hopefully she will start to feel the benefits. I was the same in my teens and so ill and wasn't diagnosed until in my twenties as they refused to do a blood test and took another 15 yrs to get to the bottom of it all so understand that's it's hard to feel motivated when still feeling pants but once she feels better, it will hopefully give her the motivation to continue. I couldn't get nutritional levels up either until went GF.

The issues with hyperactive bladder etc will hopefully go away once you've dealt with these issues but if it still continues after getting everything else optimal etc, you could possibly check her blood glucose levels and cortisol and check if all okay there

[KIRM in reply to Saggyuk]

Wow! Thank you SO much. Frightening how so many suffer unnecessarily through obstinate ignorance

[SlowDragon Administrator]

Did she stop taking Vitamin B complex 3-5 days before blood test?

When taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

How long did she leave between last dose T4 and T3 before blood draw. Usual advice is 24 hours for T4 and 12 for T3

Alternatively she was in desperate need of T3 and her body has reacted by increasing TSH

Suggests she needs an increase in T4. Perhaps increase by 25mcgs and retest in further 6 weeks

[KIRM in reply to SlowDragon]

Thank you. She is not good at remembering her B Complex so she hadn't taken it for a good few days....

Will up her dose to 125

Shall I continue with the 10mcg of T3?

[SlowDragon Administrator in reply to KIRM]

Yes, personally I would only change one thing at a time.

Does she split the 10mcg into 2x 5mcg dose am and pm?

[KIRM in reply to SlowDragon]

No.

Takes the 100/10 all in one go prior to going to bed????

[SlowDragon Administrator in reply to KIRM]

I know others do that

Personally my endo advised splitting dose

I take 10mcg at 6am, 5mcg at noon and 6pm and then Levo 112mcg at bedtime

It works for me, but it's a pain fitting in eating and supplements and remembering

[KIRM in reply to SlowDragon]

They are 5mcg tablets so makes it easy to split the dose. Will start today.

Thank you

[SlowDragon Administrator in reply to KIRM]

As she has Hashimoto's and now on T3 she will likely find it essential to be strictly 100% gluten free

Is she already gluten free

[KIRM in reply to SlowDragon]

No but we are about to embark - 4th Nov!

Have waited 7 weeks to get an appointment, and a private one at that, with a Functional Medicine/Nutritionist Practitioner for guidance. My daughter also has a massively overactive bladder so I need advice on sensitivities for that as well.

[SlowDragon Administrator in reply to KIRM]

Liver once a week would probably improve ferritin

[KIRM in reply to SlowDragon]

Hear Lambs liver is the best?

[SlowDragon Administrator in reply to KIRM]

It's the nicest tasting

[KIRM in reply to SlowDragon]

That helps!

[KIRM in reply to SlowDragon]

Thank you for your invaluable feedback...

[Hidden]

Hi, your daughter's ferratin and b12 are to low. She needs her ferratin to be 70+ and ideally a b12 of 1000

[KIRM in reply to Hidden]

Thank you..

Have struggled to get her ferritin up and B12 is a slow slog as well, but she hasn't been too good at remembering her spray recently. Had to step in and take control again!

[Hidden in reply to KIRM]

Look on the role of vitamins on Thyroid UK.

People with an under active thyroid or people with no thyroid cannot absorb this vitamin. A serious lack of B12 can cause mental illness, various neurological disorders, neuralgia, neuritis and bursitis. Some doctors believe the "normal range" of B12 is too low and that the normal range should be at least 500 - 1,300pg/ml (rather than 200 - 1,100).

Consider Jarrow's methylcobalamin lozengers of 1000 or 5000 dose aday. Or have a couple of private b12 injections. That will work fast.

[KIRM in reply to Hidden]

Thank you. My next attack was going to ask for B12 injection to give her a kick start.

[Hidden in reply to KIRM]

That will do it. It can't harm her, only help. 😁

Look on the Pas society for help or advice. Martyn hooper the chairman is a god send if you need to call him just for advice on low b12.

A person only has 20% of total serum b12 available. So she's really low

[KIRM in reply to Hidden]

Thank you for your advice will research now!

[Hidden in reply to KIRM]

I can understand your stress, she's only young. It's really hard.

Take care

[KIRM in reply to Hidden]

She is... thank you for your support and for caring x

[tzracer in reply to KIRM]

I had similar B12 level and skipped arguing with the doctor, and finding out if I had absorption and went straight to intramuscular injection myself. Did some searching and reading on the PAS site, ordered from the sites they recommend and injected every other day for a week, level went straight up to over 2000. Good luck with the GP and hope you get her levels up.

[KIRM in reply to tzracer]

Thank you, hope so too!

[Triplet54]

I was diagnosed with hyperthyroidism over 2 years ago following heart surgery. 3 months after that I was diagnosed as coeliac ! Possibly all brought on by the fact that I have systemic lupus. I've been on a very strict gluten free diet since diagnosis, especially as I get such a bad reaction to gluten. Despite eating a very healthy diet I still feel like a dead slug ! GP keeps saying my levels are OK, I'm on calcium and vitamin D tablets and also take B12 supplements. I've requested many times for a print out of my blood tests but still not received any. So I've just had private blood tests done and am waiting for the results. A gf diet may not help everyone.

[KIRM in reply to Triplet54]

Very true, a GF diet may make no difference. We are still at the stage of trial and error.

Thank you for your reply

[rosetrees]

Does she have gut issues? Sounds to me as if maybe she isn't absorbing her meds and nutrients properly. If she does have gut issues, look at doing some gut healing work with, for example, digestive enzyme, colostrum and slippery elm powder.

[KIRM in reply to rosetrees]

Thank you will look into that and will suggest as such to the Functional medicine/nutritionalist we are due to see in a few days

[marin5]

lHow many have finally been able to convert to NDT?’ My Dr tried me on 6 wks of t3 and t4 Didn't work! Symptoms increased! My Dr. Finally decided to change me to NDT! When he sent in Script for Armor Thyroid, The Pharm changed it and gave me this stinking Thyroid nt. They said if he wanted to change it, he would have to write brand name only, otherwise they give you what they want!($20.for that) I thought my Dr ordered that, but when I told him after taking 6 weeks, he took me off and put me on Nature-throid! I ham going on my 3rd month and not out of the woods yet, I just have to be adjusted on dose. But—I’m not suffering anymore! If you are taking it, This month my Pharma said that they only had 10 pills and said my insurance Co. said it doesn’t have any! They finally got it from one of their stores, but I heard that it has been recalled so they can change their medication oe adjust it. You know what that means! Too many people have been put on it and are doing well, but they don’t like that because they can’t make money on us if we’re satisfied with our medication. They said it may be returned in 5 or 6 months! I’ve had Hashimoto’s Thyroiditis Auto-immune Disease for 30 years, and I have no other road to trod! I waited too many years to go on NDT and this is the first time I can feel a little better! It den’t help too much as I have Fibromyalgia, COPD, Osteoarthritis, plus a few mor Auto-Immune diseases! They really do a job on Women!

Marin5