Levothyroxine dose

[Jellybeat]

Hi my son has hashimotos, & has worked out that he needs 200mcg levothyroxine each day to function okay.He has suicidal ideation & emotional intensity & this dose helps him feel more stable mentally . The problem is his tsh arent showing he needs this high dose anymore so the gp has decreased it to 125mcg & no matter how muck we asked they won't increase it.Has anyone any suggestions as to what we can do?

[helvella Administrator Thyroid UK]

Is he taking anyT3?

Is there any form of psychiatrist or other mental health professional involved in his care?

Are you in a position to obtain a private test including Free T4 and Free T3?

[Jellybeat in reply to helvella]

He's not on t3,an endocrinologist promised he would put him on it & then the next one we saw said no chance! Mental health team discharged him ages ago & docs won't put him on any antidepressants because they might make him worse! Haven't got a private blood test as GP is only interested in tsh.His levels were literally off the charts when he was first diagnosed & GP are saying they won't keep his levothyroxine at 200mcg as it could cause him heart problems later on.My son doesn't want to be alive most of the time so our only concern is the herr & now.

[SlowDragon Administrator in reply to Jellybeat]

How old is your son

Approximately how much does he weigh in kilo

Is he taking Levo at bedtime or waking

Definitely taking it everyday?

What vitamins is he taking

First step is to get him FULL thyroid and vitamin testing privately

See where his levels are

Likely very low vitamin levels

Improving these to OPTIMAL Level is essential

TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if his hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[greygoose]

A year ago you posted that you had obtained T3 for your son. Did he take any of it? If so, how did he do on it.

Although I agree that taking too much levo is not a good idea for many reasons, I think your GP is... how can I put this politely? Ignorant, I suppose - although I could think of other adjectives! He knows nothing about thyroid. He's giving your son T4 yet refuses to test it to see if it's too much or not enough. It could be that your son has absorption issues and that's why he needs 200 mcg. But, that's typical of GPs these days.

Anyway, just because your GP is only interested in TSH doesn't mean that you should be. If you tested privately - which I strongely recommend you do - it would be for you, not your GP.

If you've obtained T3 once, you can do it again. But you do need to know his FT4 and FT3 levels first. It would be far, far better for him to take some T3 with his levo rather than over-dosing on T4 only.

[connyankee]

Look up Paul Robinson's FB page and website. He takes private calls, I believe. He's authored books and has over 20 years of data for folks with Thyroid issues. He's in the UK. Good luck. (Your GP sounds like a real dingbat if he/she won't listen to the "suicide ideation" symptom and up the mgs for you son.) Also check out Dr. Michael Savage's (USA) book about Alzheimer's and how to avoid it. I know that your son doesn't have Alzheimer's, but in the book he writes about "Vitamin C crystals treat depression better than any antidepressant.....that Vitamin C crystals cross the blood-brain barrier faster than heroin....." He's a USA talk show host, but has multiple degrees in plant biology and herbal plants for healing. His book can be found through Thriftbooks. There's a waiting list. He mentioned the Vitamin C crystals, briefly, in one of his podcasts which is no longer listed on his podcast list for some reason. I just listened to it the other night. Best of luck to you and your son.

[Jazzw]

GPs are often fixated on TSH levels, often wrongly. I agree with others here that you probably need blood test results to be sure that 200mcg isn't too much, but assuming that it isn’t, as a last resort you can source levothyroxine from an online pharmacy. It’s definitely not a first resort and not recommended but sometimes it’s the only way.

So keep that in mind—all is not lost. I’m so sorry that you’ve got this additional stress to deal with. Mental health services are woeful at the moment and some conditions need rather more than the “chat to a mate” that folk like Ant and Dec promote as the answer to everything.

[lisabax]

in case you’re concerned about the price, thyroid fingerprick blood tests done at home are relatively inexpensive. Check the Thyroid UK website for information and prices

[Kittenmamm]

Hi Jellybeat, I am on 200mcg of synthroid too. I was on 250 but was lowered. I'm going to try to see an endocrinologist because my tsh is almost at 5. I am on an antidepressants but I'm an adult. I heard that these meds are not safe for kids or teens. Is there a way you can get him to do talk therapy and see an endocrinologist? I'm in the US so I'm not sure if you can just switch doctors or go to a specialist. Anyway I wish you luck with your son.

[DippyDame]

This is disgraceful treatment!

How old is your son?

The brain needs a great deal of T3...it's essential that he has a thyroid test to include FT3

This is one of the most affordable basic tests which has 10% discount.

monitormyhealth.org.uk/thyr...

For more advanced testing this is an example

medichecks.com/products/adv...

Once medication is initiated TSH is not a reliable marker

thyroidpatients.ca/2021/07/...

I honestly don't know how you might deal with the ignorance you are facing from these medics....

BUT...

If you can manage to get private tests done ( and request copies of your son's test results from your surgery which you are legally entitled to do) we can then analyse his results and give your more advice.

If push comes to shove you could source T3 and learn how to use it.. from forum members.

The high levo dose must be providing increased T3 level if it makes him function better....so his T4 to T3 conversion status must be fairly robust which is good.

200mcg is a fairly large levo dose which is not ideal and can cause other issues

However as it seems clear that 200mcg helps, by providing more T3 by conversion, it should be obvious to these medics that adding T3 is the next step.

For good health almost every cell in the body needs to be flooded with T3 by way of a constant and adequate supply.

Low (cellular) T3 = poor health

FT3 is the most important result followed by FT4

Forget what the GP/ endo says because they are not helping, if at all possible have your son tested privately ( links above). Post the results here and we'll have a look at what is going on.

And above all don't medicate on the basis of a TSH test alone.

The chances are that his essential nutrients ( list follows) are very low too

A full test includes...

TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and TG

Your GP isn't happy with 200mcg levo yet doesn't seem to have the gumption to do a full thyroid test to see what is going on.

We're all here to help....just ask!

Good luck

[PinkSkittles]

Can you afford to see a private thyroid Dr? They can write to the gp.

Or can you afford to by the t4 privately?

[DippyDame in reply to PinkSkittles]

Did you mean, buy T3 privately?

[PinkSkittles in reply to DippyDame]

No I mean t4

[DippyDame in reply to PinkSkittles]

Ah! I thought it was a typo.

It's T3 that the brain needs to support cognitive function....not T4,unless conversion is very good

His T4 to T3 conversion is likely poor

Why do I say this...

200mcg T4 is providing a little extra T3 but not enough to improve things greatly.

With good conversion 200mcg should provide far more T3 than this.

Buying and addding more T4 which may overmedicate him is not a good idea long term because it can cause other problems eg potentially raising the risk of cancer.

T4, raised too high, will most likely be converted to rT3, be metabolised then excreted having achieved nothing.

Instead, buying and initiating T3 is likely to help....as others have also pointed out

His core nutrients are also likely to be insufficient

All this with the caveat that testing must be done before any dose is changed

[Marz]

Am wondering how your sons diet is ? So many people seem to be low in B12 - Folate - Ferritin - VitD due to poor absorption - especially with Hashimotos.

Having LOW in range levels can also be the cause of mental issues too so testing is vital to establish the state of play.