Private blood test results: very high anti bodies. Advice on starting NDT.

[jacintaoreilly]

Currently suffering with Hashimoto disease.

Medication: 125mg levothyroxine.

Symptoms: fatigue, brain fog, no menstrual cycle, black outs after consuming alcohol, weak hair and nails, weight gain.

Supplements I’m already taking include: turmeric, probiotics, glutamine, COD liver oil, ashwangda, magnesium.

Test results as follows:

B12 (Active): 95.1 pmol/L (25.1-165.0 pmol/L)

Ferritin: 57.1 ug/L (13.0-150.0 ug/L)

Folate: 6.9 nmol/L (8.83-60.8 nook/L)

Thyroid Advanced Profile:

TSH- 0.023 mlU/L (0.027- 4.3 mlU/L)

FT4- 19.7 pmol/L (12.0-23.0 pmol/L)

FT3- 4.9 pmol/L (3.1-6.8 pmol/L)

T4- 92.1 nmol/L (66.0-181.0 nmol/L)

Anti bodies- 29.8 kU/L (0.0-115.0 kU/L)

Anti-thyroidperoxidase antibodies- 257.0 klU/L (0.0- 34.0 kLU/L)

Vitamin D: 117.0 nmol/L (50.0-100.0 nmol/L)

[MaisieGray]

I can't see mention of very high antibodies in your results. A result of 29.8 (0.0 - 115) is well within reference range, and certainly not above the range, so isn't indicating a positive result for any autoimmune condition (you haven't said which antibodies they are).

[london81 in reply to MaisieGray]

this is my sisters post she’s missed off her TPO antibodies which were 298 (0-34) and she’s on 125 thyroxine hoping to change over to nature throid which i take . will ask her to update post. doctors and endo fobbing her off with chronic fatigue talk when she’s clearly got low folate moderately low t3 and very high TPO

[greygoose]

A bit difficult to give advice on starting NDT without more information. Do you have any sort of diagnosis? Are you taking levo? If so, how much?

[london81 in reply to greygoose]

this is my sisters post she’s missed off her TPO antibodies which were 298 (0-34) and she’s on 125 thyroxine hoping to change over to nature throid which i take . will ask her to update post. doctors and endo fobbing her off with chronic fatigue talk when she’s clearly got low folate moderately low t3 and very high TPO

[greygoose in reply to london81]

Doctors are very unlikely to take much notice of antibodies or nutrients. They just don't know enough about them. Her B12 isn't exactly brilliant, either, so her best bet would be to get a B complex with methylcobalamin and methylfolate and take that to bring them both up. Nutrients really do need to be optimal before starting NDT. Her vit D is good, but her ferritin is rather low.

The high antibodies, of course, mean that she has Hashi's. But, doctors think that that is of no consequence. Does she understand how it works? About the swings from hypo to 'hyper'? Not all Hashi's people get on with NDT, but it's certainly worth a try. So, if she's been on 125 mcg levo, it might be best to start NDT on one grain - which might be a tiny bit of a reduction in dose, but as she doesn't convert very well, it's difficult to calculate the exact equivalent. Then, she could increase by 1/4 grain after two weeks if she feels under-medicated.

[london81 in reply to greygoose]

thank you as always grey goose you are a great help!! you have echoed what i’ve said. funnily enough her GP said she was over medicated on b12 so she stopped taking it. will tell her to update the post when she finishes work.

in terms of the antibodies i think they have doubled since she was first diagnosed as a teenager and she’s had very little help at all from doctors or endos except to say “ tsh too low” “ you are fine” “ antibodies mean nothing” bla bla bla uneducated! my father is 60 and is in a total mess due to same issues. myself and sister are trying to be proactive and work on this so we avoid what he has suffered. i’m doing well on ndt and vitamin levels all good.

thank you again

[greygoose in reply to london81]

Yes, they're extremely ignorant, and really don't care because they can't prescribe expensive, dangerous drugs for thyroid. She may very well have been over-medicated on B12, but she obviously can't hang on to it, so needs a maintenance dose such as she would get in a B complex. But, if she buys something like Igennus B complex, it contains 400 mcg methylfolate, so no need to take folate separately.

Antibodies fluctuate all the time, it doesn't mean anything if they go up or down. They are at their highest just after an immune system attack when they come along to clean up the trace of TPO and Tg that leaked into the blood during the attack. Then their numbers diminish again. It doesn't mean that her Hashi's is any more or any less severe.

[london81 in reply to greygoose]

thank you. so what is the suggested next steps if the antibodies are high? I understand that the aim is to get them down to low levels to feel well again? what is the purpose of testing them if they don’t matter?

thanks for the tips on the supplements

[greygoose in reply to london81]

No, getting the antibodies down wouldn't make much difference. You would still have Hashi's. Usually, antibodies are only tested once for diagnosis purposes. They aren't tested at every blood test.

[london81 in reply to greygoose]

oh ok that’s not what i’ve always understood, I have always thought they need to be reduced. so how can she address the attack’s that i assume have been occurring? my antibodies are now low and my levels all good, and.l. feel much better. so should she focus on the low nutrients and getting t3 up i.e. conversion issues? is there a reason or research that says antibodies aren’t relevant even though they have a reference range? or do you mean once you have hashimotos it’s a case of getting all the other levels optimal because antibodies will always be around because you have an autoimmune disease ? sorry for all the questions i want to make sure i understand so i can help my sister and my father who also has this disease

[greygoose in reply to london81]

As I explained above, the antibodies come in after the attack. They don't do the attacking - which is what the majority of people believe, which is why they advise reducing levels. But, it's not true. So, even if you could reduce your antibodies - which is difficult to prove, given that they fluctuate - you would still have attacks - just no-one to clean up afterwards.

Some people find that going gluten-free reduces the attacks. Others find that suppressing the TSH is the way to go. But, there is no sure and certain way of doing it. The disease just has to run its course.

Your antibodies are low at the moment, but they could rise again. If they don't, it's because you haven't got much thyroid left to attack, so they're not needed.

Yes, she most certainly should concentrate on raise nutrients to optimal. That might help conversion, but there are so many things that can affect conversion that it's often difficult to improve. In which case, NDT is possibly the best way to go - if it suits her.

is there a reason or research that says antibodies aren’t relevant even though they have a reference range?

I didn't say that antibodies aren't relevant. They are tested - or should be - for diagnosis of Hashi's. If they are high, you have Hashi's. But, they don't do any harm, they are there to clean up the traces of TPO and Tg that leak into the blood during an immune system attack on the thyroid. You shouldn't have TPO and Tg in the blood, so the antibodies come along to remove it. So, for that purpose, they are very relevant.

They are only test once if high, because if they're high, it means you have Hashi's. But, as they fluctuate, it's sometimes necessary to test them several times before you catch them at their high point. However, just because there's a range - and there has to be a range for everything - doesn't mean that it has any relevance on the severity of the disease. It just means under is negative, over is positive. But, if it's positive, you have Hashi's, and it doesn't go away no matter what you do.

The antibodies will always be around whilst there is a thyroid to be attacked. They are needed to clean up afterwards. But, when the thyroid is finally dead - or if you have your thyroid removed - the antibodies will go back down to very low levels. Every body has some TPO and Tg antibodies, that's normal. But, if they are over-range it means you have Hashi's. But getting rid of the antibodies does not mean you get rid of the Hashi's. Best to concentrate on optimising all other levels.

[london81 in reply to greygoose]

thank you, that is very complex for me having studied this for 6 years so i think may be way too much for my sister to take in right now, but as with everything we have learnt over the years it will soak in eventually, for now the best thing I think she will need to consider is optimising her levels to reduce symptoms, start on NDT at 1 grain- 1.5 grain and reducing stress, and going gluten free. looks like focusing on reducing antibodies is misguided, so i've learnt something today thank you. symptoms are definitely most important. i probably dont have any thyroid left as my previoulsy swolen and hoarse throat has gone, and i am on 5-6 grains NDT to feel well! thank you for your time it is much appreciated

[greygoose in reply to london81]

You're welcome.

Yes, lots of people think it's important to try and reduce antibodies, because they believe it's the TPO and Tg antibodies that attack the thyroid, but they don't. So, I wouldn't even mention antibodies to your sister, if I were you. She should just be aware of the possible hypo/'hyper' swings so that she doesn't let her doctor bully her into reducing her dose of hormone.

Is your sister on this forum? Reading on here, a little every day, is the best way to understand it all. It takes time, there is so much to learn - we can never know it all! - but enough to survive.

[london81 in reply to greygoose]

oh yes her name is jacinta this is her post i’m just butting my nose in as she’s at work thank you so mych the information you provide here for free is changing lives, im feeling great no thanks to my GP!

[greygoose in reply to london81]

Oh, I see. lol I have a very bad habit of replying to post without looking at the name of the poster. lol Well, she's lucky to have a sister that looks after her so well. x

[london81 in reply to greygoose]

that’s ok it’s confusing isn’t it with so many posters and comments! thank you

[greygoose in reply to london81]

It can get very confusing!

[jacintaoreilly in reply to greygoose]

Thanks for all your advice!

Would suggest taking ferrous sulphate for iron levels?

[greygoose in reply to jacintaoreilly]

You're welcome.

Yes, some kind of iron supplement, but I'm not a specialist on iron - that's what I find really complicated! Or, it seems that eating liver, or liver pâté, once a week can raise levels very well.

[london81 in reply to greygoose]

just to check if ferritin low does she take iron and folate low take b9 ( b complex as you mention with b12)