Graves disease: Hello everyone. Wonder if you... - Thyroid UK

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Graves disease

Wilky21 profile image
34 Replies

Hello everyone. Wonder if you could help with my results from medicheck. My vitamins and minerals are all good apart from folate which is low. My other results are

TSH 0.667 0.27 - 4.2

Free T3 6.27 3.1 - 6.8

Free thyroxine 13.7 12 - 22

Thyroid peroxidase antibodies 116 <34

Thyroglobulin antibodies 16.1 < 115

CRP 3.05 < 5

Ferritin 76.7 13-150

Folate 2.96 > 3.89

B12 102 > 37.5

Vit d 83.3 50 - 175

Magnesium 1 0.7 - 1

Medicheck said all thyroid results are normal apart from elevated thyroid peroxidase antibodies which are elevated

On reading that and from reading posts on here I thought my TSH was high for Graves and my free thyroxine was low

Any help would be greatly appreciated

Many thanks

Dawn

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Wilky21
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34 Replies
SlowDragon profile image
SlowDragonAdministrator

Please can you add the ranges on these results. You can edit the original post

Plus add the vitamin results and ranges

Have you had Graves’ disease confirmed by high Trab or high TSI antibodies ?

thyroiduk.org.uk/tuk/about_...

SlowDragon profile image
SlowDragonAdministrator

Just read previous post that you had RAI years ago

Wilky21 profile image
Wilky21 in reply toSlowDragon

Hi slowdragon

Have just added ranges.

Thankyou for having a look

SlowDragon profile image
SlowDragonAdministrator in reply toWilky21

So your Ft4 is low....but Ft3 is very good

You say folate is low

Can you tell us actual results?

All four vitamins need to be OPTIMAL

Vitamin D at least around 80nmol and around 100nmol maybe better

Folate at least over ten

B12 at least over 500

Ferritin at least over 70

SlowDragon profile image
SlowDragonAdministrator

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test, or buy test online BEFORE trying strictly gluten free diet

Assuming test is negative you can immediately go on strictly gluten free diet

If coeliac test is positive you will need to remain on high gluten diet until endoscopy, with maximum 6 weeks wait, officially

Trying strictly gluten free diet for 3-6 months

If no noticeable improvement, reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Wilky21 profile image
Wilky21 in reply toSlowDragon

Thanks slowdragon That’s what I thought. What did you think to TSH level. I have put vit results on now. Thanks for the advice about gluten free. Will try that.

Wilky21 profile image
Wilky21 in reply toSlowDragon

Can I ask if my ft4 is low is that why I am so stiff and achy and gaining weight

SlowDragon profile image
SlowDragonAdministrator in reply toWilky21

Most people on just levothyroxine need Ft4 at least over 60% through range....

Your Ft4 is only 17% through range

chorobytarczycy.eu/kalkulator

Suggests you need dose increase in levothyroxine and retest 6-8 weeks later

Folate is deficient, GP should prescribe folic acid...but you may be better off Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet (or even just a half a tablet for first week) per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Wilky21 profile image
Wilky21 in reply toSlowDragon

Hi slowdragon

So I spoke to my GP yesterday about my test results from Medicheck and she said the folate levels they work from are different to Medicheck. They are lower so using their range so am not low. This is so confusing. Why don’t they just work off the same ranges So my GP wants to do all the tests again in a months time.

SlowDragon profile image
SlowDragonAdministrator in reply toWilky21

Did GP increase levothyroxine?

Folate is clearly deficient...she’s being obtuse

Wilky21 profile image
Wilky21 in reply toSlowDragon

Thankyou for replying. No she didnt do anything because she said she wants to go by the results that come from her

SlowDragon profile image
SlowDragonAdministrator in reply toWilky21

So clearly being as difficult as possible

Is she doing coeliac blood test too

If not organise your own...very easy home test

Wilky21 profile image
Wilky21 in reply toSlowDragon

Yes it seem so. You said it wouldn’t be easy. How do you coeliac test at home. Sorry bombarding you with questions

Wilky21 profile image
Wilky21

Thankyou. That really helps. Just need to speak to Gp now to increase dose. I don’t like bothering them at this time though

pennyannie profile image
pennyannie

Hey there Wilky

Well your T3 looks very good but your T4 is a bit low on the range.

I think if your doctor sees your T3 result you might have difficulty getting an increase.

You might also have as issue if your doctor manages your treatment on a TSH blood test result.

Initially you went ' hyper ' and were diagnosed to have Graves Disease because of positive antibodies in your blood, unique to Graves.

These antibodies can still be present, but because you now don't have a thyroid, they can't ' set you off ' and into another hyper phase .

Your blood hasn't been changed, and these TRab antibodies can sit on the TSH receptors indefinitely, so you will ' look ' hyper when in fact your T3 and T4 show you not to be.

I think your previous doctor knew this and that your body was attuned to function on a higher level of Levothyroxine, and as you say, you didn't have any undue problems.

Personally having drunk RAI, I do not think the medical profession have a full understanding to all the consequences and fall out of this toxic substance, and follow guidelines to cover themselves, there are no guidelines for Graves after RAI - maybe it would help if there were.

Wilky21 profile image
Wilky21 in reply topennyannie

Thanks pennyannie. I thought I would have a problem with GP. Are you talking about the antibodies that are elevated. Do you have gluten free diet also and does it help

Thankyou for replying

pennyannie profile image
pennyannie in reply toWilky21

Hey there,

Well, I'm talking about the antibodies unique to Graves disease that make the TSH blood test a very unreliable measure of your thyroid hormones. There are several antibodies and one in particular, TRab, latches onto TSH receptors thereby distorting a TSH blood test result.

In my particular surgery I was dosed and monitored on a TSH blood test and kept being dosed down because of my TSH blood test result.

When I insisted on a T3 and T4 being read my T3 was at only 25% through the range, whilst my T4 was at the top of the range, and I'd been struggling along like this for two years being told, I couldn't have an increase in Levothyroxine as I was on the verge of being " hyper " again.

I thought all my symptoms were Graves related until I came to this amazing website.

In fact they were symptoms associated with undermedication of Levothyroxine plus if you have had RAI it is necessary to keep a low/suppressed TSH, as, if you think about it, why would anybody want to stimulate a gland full of antibodies and RAI ?

We drank a substance to kill off the thyroid, why are we then wanting it to function ?

I think there need to be guidelines for Graves after RAI, and maybe your previous doctor should write them. Doctors work to guidelines and computer dogma, but at present they are left ' in the air ' with Graves and treat us as they would someone with basic hypothyroidism.

My diet is relatively clean, and I eat fresh as best I can. I was never one for bread, pasta, or rice or cakes, so haven't changed my eating habits that much. It's definitely worth a try as I think we underestimate the need for an effective and functioning gut.

P.S.. I don't know if this is going to work, but anyway here goes ;-

thyroidpatients.ca/2020/04/...

I don't know how to do this but am trying for the Canadian Thyroid patient support group :

Wilky21 profile image
Wilky21 in reply topennyannie

Thankyou that’s really helpful. It’s my thyroid peroxidase antibodies that are elevated. What are those ? This website has been extremely helpful and the people in the support group are full of knowledge. I am so glad I joined.

Lora7again profile image
Lora7again in reply toWilky21

Mine are 4000 and have been that high for a couple of years. My thyroid is under attack and I do not how to stop it. I have tried a gluten free diet which made no difference and selenium which has not worked either. You can read my story on my profile page if you are interested.

Wilky21 profile image
Wilky21 in reply toLora7again

Thanks Lora I will do. Havnt u been referred to endocrinologist then for that. It’s really high isn’t it

Lora7again profile image
Lora7again in reply toWilky21

Unfortunately the NHS don't test my antibodies because they don't think they are important so I do my own private testing. I did have an Endocrinologist about 10 years ago but he was useless so I left his clinic. I now look after my own thyroid health because the NHS just go by just the TSH which means nothing. It is the T4 and T3 that count and they give a good indication of how your thyroid is functioning.

Wilky21 profile image
Wilky21 in reply toLora7again

That is true. Many years ago they always used to check t3 and t4 but then they stopped. Don’t you show your Gp your private results. Won’t that help your case. Have just read your profile. It just makes you lose faith in the nhs altogether It’s a good job you know your stuff so you are able to self manage how do you get your medication then if you self manage

Lora7again profile image
Lora7again in reply toWilky21

I actually had a thyroid storm last year and I was hopeful I would have a more detailed blood test. Unfortunately they just tested the TSH even though they know I have Graves' disease written on my medical records. I even wrote to my local MP last year and she was supposed to put my case to Matt Hancock ... you can read the response I got if you look on my profile page and scroll down to my threads.

Wilky21 profile image
Wilky21 in reply toLora7again

What is a thyroid storm ?

Lora7again profile image
Lora7again in reply toWilky21

I just copied and pasted this to explain what they are.

Thyroid peroxidase (TPO) antibodies are a marker for the presence of autoimmune thyroid disease. Blood test results for TPO antibodies are positive in 95% of patients with chronic lymphocytic thyroiditis, also known as Hashimoto's disease, and in 50% to 80% of patients with Graves' disease.

Wilky21 profile image
Wilky21 in reply toLora7again

Thankyou Lora. That does help. What damage does it do to your body being so high though

Wilky21 profile image
Wilky21 in reply topennyannie

The link worked. Thanks. It made interesting reading

pennyannie profile image
pennyannie in reply toWilky21

That was a first for me !!

I don't understand ' cut and paste ' and typed it all in, one finger at a time !

I'll blame my lack on computer skills, on my Graves and having dyslexia.

P.S.

If you wish to you can buy T4-Levothyroxine on the internet, as you can T3, or NDT - Natural Desiccated Thyroid which was the successful treatment for around 100 years prior to the introduction of Levothyroxine, blood tests and ranges and guidelines as instituted by Big Pharma in around the 1960's.

I'm self medicating with NDT as it contains all the same named thyroid hormones that our own thyroid produces T1, T2, T3., T4 and calcitonin. It is pigs thyroid dried and ground down into tablets, referred to as grains., with each grain containing approximately 38 T4 + 9 T3.

Lora7again profile image
Lora7again in reply topennyannie

You need to right click and then copy and then right click and paste on your post.

pennyannie profile image
pennyannie in reply toLora7again

Thank you Lora,

BUT I'm sorry - I seem to have mental block with all things laptop, and flat pack.

If this little laptop doesn't come on tomorrow, like it should, I've no idea about anything, other than to check that I've turned it on from the wall socket.

Many people have kindly tried to help me on here with this, and the more I' m told the more anxious I get and then ' glaze over ' .

It is making me a bit angry, with myself, like when at school and being dyslexic.

It would save me a lot of time, but hey, ho, it could be worse, at least I'm here, thanks to my niece setting this set up for me.

Lora7again profile image
Lora7again in reply topennyannie

Not everyone knows how to use a laptop I prefer to use a desktop myself but I do have an ipad which I watch netflix on. My husband can only use one finger when he uses his laptop and I keep asking him to try to use 2 but he won't. I am lucky because I was trained by the NHS when the service decided to use them. We did not have a mouse when I first started using them so it is much easier now. I think the BBC was one of the first ones I used which was more like a word processor.

Wilky21 profile image
Wilky21 in reply topennyannie

And do you feel better on that rather than Levo. Have just been reading g an article on how to reduce your thyroid peroxidase antibodies. There are several different diets and it mentioned ndt

pennyannie profile image
pennyannie in reply toWilky21

Well yes, that is a foregone conclusion, otherwise I wouldn't be on here, trying to help and advise other people in a similar position to where I was a couple of years ago.

Wilky21 profile image
Wilky21 in reply topennyannie

Very true. Thanks pennyannie for your great advice and hope you remain well

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