Very high TPO levels | next steps?

[Jaqen]

Hi,

My partner has been having some Thyroid issues for a number of years now. She was prescribed levothyroxine in 2015 but the GP never really followed up or monitored tests result etc.

She has access to some results on Patient Access, but not everything from all the blood tests that she's had.

They are as follows:

Test | Date | Result | Range

Serum Free T4 | 11/2014 | 10.5 | 10.6-21

TPO antibodies | 07/2015 | 1480 | 0-59

Rheumatoid factor | 01/2016 | 14 | below 14

TPO antibodies | 11/2016 | 2128 | 0-60

Serum Free T4 | 11/2016 | 10.5 | 10.6-21

Serum TSH | 08/2017 | 1.8 | 0.3 - 4.5

Serum Free T4 | 08/2017 | 14.4 | 10-22

Now because of the high TPO we're thinking it's Hashimoto's. But can anyone shed some light on what the results indicate that would be appreciated. And just how high are these levels? I've had a search on here and most people seem to report back them being in the hundreds, rather than thousands.

She's recently had to change GP because the old one changed boundary area and her new one is terrible, next routine appointment available is not until the end of July. And after how the previous GP did nothing we're not expecting much from them.

We're thinking about doing MediChecks test and taking those results to a private Endocrinologist. We're based in Birmingham if anyone has anyone they can recommend?

[greygoose]

The actual number of antibodies are slightly irrelevant, because they fluctuate all the time. And, when you test them, you cannot know if they are at their highest or their lowest. But, if they are over-range just once, then it means you have Hashi's. And, there aren't any degrees of Hashi's, just Hashi's.

There is no cure for it, but some people manage to lower the antibodies - they can cause symptoms - by going 100% gluten-free and taking selenium. The treatment the doctor gives you is thyroid hormone replacement, which just replaces the damaged thyroid can no-longer make enough of. It doesn't have any effect on the Hashi's itself. However, what she needs to do is to take enough of it to suppress her TSH - and keep it suppressed. However, that isn't easy because doctors - who don't understand Hashi's or antibodies - are scared rigid of a suppressed TSH.

How much levo did the doctor give her? Is she still taking it? I think it would be a really good idea to get new labs done privately to see where she is now. You need :

TSH

FT4

FT3

vit D

vit B12

folate

ferritin

She probably has nutritional deficiencies, because Hashi's affects the gut. And low nutrients also cause symptoms. Everything needs to be optimal for the body to be able to use thyroid hormone.

When she gets the results, post them on here, with the ranges, and let's have a look.

[Jaqen in reply to greygoose]

Cool thanks for the reply greygoose.

She's on 50mg and it's never been changed that's what she was started at. She even had a review of her repeat prescriptions at the new GP the other week and the women doing it didn't even question.

She does 'officially' have vitamin D and B12 deficiency, but as with the thyroid something was prescribed and never been monitored / followed up.

She takes 5000iu D3 and 50 mcg cyanocobalamin.

[greygoose in reply to Jaqen]

50 mcg cyancobalamin? She might just as well take Smarties. But, she really needs them retested, and then we can tell her what she should be taking. Vit D3 should be monitored regularly because too much can be toxic.

50 mcg is a starter dose. She should have been retested after six weeks and her dose increased by 25 mcg. I suggest she writes a letter of complaint to her old surgery about her ex-doctor's negligence. There's too much of this sort of thing going on, and it's time people started complaining.

[Jaqen in reply to greygoose]

We've found some additional results of vitamin things.

Test | Date | Result | Range

Serum vitamin B12 | 8/2014 | 184 | 180 - 650

Serum folate | 08/2014 | 3.6 | 2.8 - 15

Serum ferritin | 02/2017 | 30 | 10 - 320

Serum vitamin B12 | 04/2017 | 222 | 200 - 900

Serum folate |04/2017 | 4.55 | 3.89 - 26.8

Technically not outside the ranges, but still at the very low end of them.

I should note she is vegetarian, but we're always eating dairy, eggs, vegs etc. I can't remember if the GP at the time said he thinks it might be dietry or not.

[greygoose in reply to Jaqen]

Yeah, but they're all too old to be of any use. She needs new labs.

By being vegetarian she is vastly cutting down on her sources of B12. Yes, it's in eggs and dairy, but the main source is meat. Even so, it's not a question of what she eats, it's what she absorbs that counts. Hashi's people often have gut problems that cut down on absorption, plus low stomach acid. So, it's really hard for us to get all we need from food.

Another danger area for hypo végétariens is iron. Her ferritin was very low in Feb 17, so she really needs to know what it is now. Her folate was also low in 17, and that's found in leafy greens. Presumably she eats a lot of those, so you can see how bad her absorption is.

[jimh111]

Her TPO antibodies are very high and it is likely her thyroid will continue to be damaged. Selenium does seem to reduce TPO anitbodies a little and in some patients with gastrointestinal problems and very high TPO levels treating helicobacter pylori infection (if present) seems to help. Otherwise there's nothing effective, the antibodies die away of their own accord. There's weak evidence that going gluten free might have an effect in the small proportion of the population who carry antibodies to gluten (about 8% of the population). My view is it isn't worth bothering with gluten free unless you are coeliac, whenever double blind studies are carried out in non-celiac subjects who believe they are gluten intolereant the results show no improvement from going gluten free.

You haven't described any symptoms. Is she doing well and just worried about the numbers? If this is the case all is fine. I suspect not, as her fT4 is rather low, when on levothyroxine fT4 has to be around 18 to provide enough fT3 (the active form). This is because the healthy thyroid secretes T3 as well as T4 and there is no T3 in levothyroxine, so you need a higher fT4 to get enough fT3. Her levothyroxine dose should be increased.

If TSH is high it can lead to higher TPO antibodies, but her TSH is not high and so from a purely TPO point of view the TSH is fine. Increasing her levothyroxine dose will lower her TSH but as long as it's not too low (say < 0.3) there is absolutely no problem. Some patients need larger doses of hormone that suppress the TSH. At this stage she should avoid this if at all possible. Fine if she cannot get better without suppressing the TSH but try to avoid it, for a number of reasons. A suppressed TSH is associated with osteoporosis in some cases although this tends to get exaggerated. More serious a suppressed TSH in the long term increases the risk of atrial fibrillation and subsequent stroke. A further disadvantage is that TSH stimulates 'type 2 deiodinase' in various tissues, this is what converts T4 to T3. So with a suppressed TSH you get less T3 being produced. The problem is that once the TSH has been suppressed for many months it may never recover, even if you subsequently reduce the levothyroxine dose. So see if she can get well without her TSH going too low, give it six months or so.

As I mentioned some patients do need high dose hormone treatment that suppresses the TSH. Without it they remain clinically hypothyroid which itself carries risks apart from having a miserable life. It takes a long time to recover from hypothyroidism. I would ask for increases in her levothyroxine until her fT4 is around 18 or 19. Bear in mind that her thyroid will probably continue to decline so it makes sense to be a little ahead of the game as it were rather than being undermedicated and continually playing catch-up.

[shaws]

Blood tests should always be at the earliest, fasting (she can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwards. This helps keep the TSH higher as doctors seem to only look at the TSH (Thyroid Stimulating Hormone - from the pituitary gland). It drops throughout the day and may mean the difference of an increase or not.