Should we give up with thyroxine?

[bobbobing]

My son has been on thyroxine for over a year now and TSH down from around 5 to just over 1 but no improvement in fatigue. We have checked all vitamins and supplemented. He is on correct dose for his weight. He is trying fluoxetine now too. Should we try coming off thyroxine if not helping. He is 17.

[Lalatoot]

You need to look at his thyroid hormone levels ie ft4 and Ft3. These levels will guide you as to whether he is on the correct dose of levo and how well he is converting it.

[jrbarnes]

If I'm tired the first thing I'll check is my TSH, T4, T3 levels and if I have to pay for the tests myself I'll do it. I know that when my thyroid levels are not where they should be that my mood is low and I'm fatigued. My thyroid problems also started in my late teens. I also know that certain medications can interfere with thyroid medication. The T3 levels are very very important. It's like a feel good hormone. They can pump your son full of Levothyroxine but that doesn't mean he is converting it to adequate levels of T3, which will cause symptoms of hypothyroidism. Everyone is different but most people on Levothyroxine have to be towards the top of T3 not to have any fatigue or low mood. I did not take thyroid medications and ended up losing half my thyroid to a growth. That's one of the risks of going off the meds.

[SeasideSusie Remembering]

Bobbobing

He is on correct dose for his weight.

We need what we need. Dosing by weight is in the new guidelines for starting someone on Levo

nice.org.uk/guidance/ng145/...

Managing primary hypothyroidism

1.3.6Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

1.4 Follow-up and monitoring of primary hypothyroidism

Tests for follow-up and monitoring of primary hypothyroidism

1.4.1Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.

You need to go by test results and symptoms. What are his latest results, with reference ranges, for

TSH

FT4

FT3

Thyroid antibodies

Vit D

B12

Folate

Ferritin

[SlowDragon Administrator]

Previous post

healthunlocked.com/thyroidu...

Obviously need to get FULL Thyroid and vitamin testing redone to see if vitamin levels are improving

Come back with new post once you get results

[bobbobing in reply to SlowDragon]

Hi I just got new blood test results. Where should I post these? Do I start new thread? Thanks

[SlowDragon Administrator in reply to bobbobing]

Yes new post is best

[SlowDragon Administrator]

How much levothyroxine is he currently taking

Always get same brand?

Which brand?

Exactly what vitamin supplements is he taking?

Most people on levothyroxine when adequately treated will have TSH well under one

[Andrew1968]

I went through a similar thing, ask GP to check his testosterone level!

[HashiFedUp]

I need my TSH to be between 0.2-0.6 (range 0.2-4.2) to feel well. So he may need slightly more T4 Levothyroxine.

Also you need to make sure they test T4 and T3 as well as TSH, because it is not possible to treat thyroid patients on the bases of TSH alone.

Make sure his vitamin D is well into the acceptable zone too especially at the moment. Vitamin D deficiency is extremely common and especially with thyroid patients. And can mimic the same symptoms.

Try to get his T4 and T3 75% up through the range eg range is say 10-20 therefore ideally get it to 17.5.

Lastly, if T4 alone does not make him well, you MUST be referred to an endocrinologist who will prescribe T3. If they refuse to refer or the endocrinologist won’t prescribe T3, see a private Endocrinologist (£150 well worth every penny in my own experience - my private endo is superb and I have my life back)!!

[Wired123]

Agree on testing Testosterone as well as Growth Hormone. Has he been thoroughly checked for adult male development: voice breaking, testicular development, facial hair, body hair. A good endo would do this, you may even want to spend a bit and go private with NHS blood results. The investment is worth it as poor treatment could wreck his future (been there)!

Is he overweight as that’s also one area needing tackling that is often overlooked.

[penny]

It’s not the TSH level which matters but the T4 and T3 and ratio of each; and how you feel.

[stockman27]

Here are some of the things I have learned . I have no thyriod as I had it removed in 1999.

1. Take your thyroxin with water on an empty stomach and wait for an hour before you eat anything. Dont take it with milk or soya products.

2 Have a blood test completed , you need TSH, T4, FT4 and T3. T3 is the one that does all the work if you son is not converting then that is why he feels so tide. I would recomend medichecks bloods can be taken at home and you get the result with in a few days. The NHS only check T4 and TSH and in my area only TSH.

3 not many people on here mention his adreanal glands, the NHS dont check or they only check for cushing disease.

Again medcheck will check this you need a DHEA-s blood test.

4 Sex Hormones. everybody thinks your sex hormones are about having sex!, Yes that is one of the functions but Testostorone in a man helps with mood an muscle growth and energy levels. It was once expalined to the that there is a triangle of hormones that carries that Throxine around the body any one of these are missing then you have problems and its not always low thyroxne. At the apex isThroxin and T3 at the base its Testostorone and DHEA-S. Get them right and you may feel a bit better.

Good luck PM me if you need any help. John

[klr31]

No, I wouldn't come off thyroxine.

Karen