Feedback on the results please

[Kari55]

Here are my husband’s latest results (he was diagnosed with Graves’ disease in February). His levels are getting quite low now and he is remaining on 50mg of PTU. He will go back for next blood check in 3 months.

His TSH is still undetectable. How long it would take for TSH to lift? What was your experience? Is there a correlation between low TSH and high antibodies?

I would also appreciate some feedback on his vitamin levels. Thank you!

Vit B12 - 748 (239-931)

Folate - 1899 (18-464)

Ferritin - 49.5 (18-464)

Vit D - 171 (50-200)

TSH 0.01 (0.465-4.68)

T4 10.2 (10-28.2)

T3 5.1 (4.3-8.1)

[greygoose]

There is a correlation between low TSH and some antibodies, but which antibodies did he have tested? But the TSH is not the most important number, it's the FT3. And that isn't high anymore.

Three months is too long to leave someone with Grave's on antithyroid drugs, without testing.

[Kari55 in reply to greygoose]

He tested positive for TSH Receptor Stimulating Ab 11.4 (0.81-3), TPO 67.2 (0.34). Yes, I agree it is long but the endo won’t see him earlier so there is not much he can do.

[greygoose in reply to Kari55]

Can't his GP test him? He could become really hypo on the same dose all that time. That's disgraceful!

[Kari55 in reply to greygoose]

Yes, perhaps he could ask his GP to test him after 6 weeks or so. To be honest his endo is rubbish and she kept overmedicated him and he had massive problems with his white cells. He then dropped his PTU himself to 50mg and his white cell problem disappeared. Thanks for your suggestion to see a GP in the meantime.

[greygoose in reply to Kari55]

I think he ought to tell his GP all that, and see if he can't be referred to a different endo.

[Kari55 in reply to greygoose]

He is seeing his endo privately. The insurance will only cover one more visit.

[greygoose in reply to Kari55]

I see. Well, an NHS endo might be better than the one he's got now.

[Kari55 in reply to greygoose]

Yes, although his private endo is also an NHS doctor. I think he will go to see a GP mid July or maybe do a Medicheck test to see what happens with his levels as 3 months is too long.

[greygoose in reply to Kari55]

It certainly is!

[Rmichelle in reply to Kari55]

3 months !! He should be tested every 6 weeks its standard, i get my bloods done regular, just ring the gp surgery and request blood forms for his tsh and frees. My Endo now gives me blood cards about 3 of them so i just pop along to hospital to get them done. 😊😊

[Kari55 in reply to Rmichelle]

I know, it is shocking, especially that he is going privately at the moment!

[Rmichelle in reply to Kari55]

Not always the best-private but nhs is just as bad.

[Pensweetie]

As you know Kari55, I was diagnosied with Graves in Sept 18. My TSH was still undetectable in March 2018. However, by May 2018 (8 months after diagnosis) it had increased quite dramatically to the low end of the normal range. So it does take time. Hang on in there and good luck!

[Kari55 in reply to Pensweetie]

That’s good to know! So he has still have some time to go.

[Cat4health]

Antibodies sre theorised to have a direct relationship with tsh n a relationship that is independent of the hyperthyroidism. What does that mean? It means anti-thyroids Do Not bring up the tsh unless you go hypo which your husband looks like he's about to. The problem there is that this type of tsh increase would be a pointless exercise because going forced hypo often raises graves antibodies. The best practice guidelines from the states say graves patients should be on the lowest dose of anti-thyroids that allows their ft4 to be at the upper end of the normal range and this will facilitate a reduction in antibodies and ultimately help the body achieve remission (they still advise c. 2 years on meds) tsh takes a long time to come up but as long as his ft3 n ft4 are within the middle to upper part of the range than he'll be in no danger from a low tsh. Therefore it looks like your husband needs to significantly reduce his PTU n all of the above info is available on ElaineMoore.com (pharmaceutical researcher and expert in the field of graves) along with research article links so that you can explain it to your doctor

[Kari55 in reply to Cat4health]

Thanks Cat4health, I will email Elaine Moore and ask what she thinks. It does look like my husband is about to go hypo but his endo didn’t seem to see it! To be honest if he didn’t drop his dose twice before on his own, he would have been hypo and neutropenic by now. When he asked her about correlation between TSH and antibodies, she said that there is no correlation whatsoever. I can’t understand why she doesn’t know how to handle this

[Cat4health in reply to Kari55]

Oh im so sorry to hear thst. My endo was exactly the same. It begs belief honestly!! I've met over 6/7 endocrinologists and only one of them seemed to have the first clue about Graves disease, the rest treat it as if it's a simple thyroid toxic episode which its not at all. They are not trained in immunology I think. Well done to you and your husband for taking things into your own hands. Definitely ask Elaine, she's the best!!

[elderflower2016]

My TSH started rising at month 11 after diagnosis. So yes it can take time. How long has your husband been on 50mg (PTU) - how long after the dose reduction did he have the blood test with the results you copied above ? The FT4 does seem low now. My endo keeps my FT4 mid-range at least.

[Kari55 in reply to elderflower2016]

He has been on 50mg for 2 months. The blood test I copied are from last Wednesday and previously he was checked 6 weeks ago

[elderflower2016 in reply to Kari55]

OK, he could try reducing further then. He will go under if he waits another 3 months without any adjustment.

[Kari55 in reply to elderflower2016]

Yes, I think he needs to cut his tablet in half and take 25mg a day. He will also do a Medicheck in 4 weeks so see what is happening.

[elderflower2016 in reply to Kari55]

Or he can alternate. Take 50 mg on one day, and 25 mg (half a tablet) the next day. That will make it 37.5 mg on average.

[Rmichelle]

Hello, if it was me i would cut down the meds myself as his frees are very much in the lower end of the range, very similar to mine in fact, im still on carbi but only 2.5 mgs but i have gone to every other day now in hope to raise my frees.xx

[Kari55 in reply to Rmichelle]

Thanks Rmichelle. I have contacted Elaine Moore and she definitely advised to ask endo to drop his dose otherwise he will become seriously hypothyroid. He has started taking 25mg today but still need to tell his endo, I’m sure she will freak out. In 4 weeks he will either ask his GP for a blood test or he will do it via Medicheck.

[Rmichelle in reply to Kari55]

I think you need to take charge sometimes of our own bodies-she will freak out but so did mine when he threatened to discharge me but what the hell-im on endo number 3 nhs but even though he is not brillant he seems better than the others but still talks blah blah.🌟🌟