Private blood results

[Opposite]

Hello again,

I have some updated bloods and as predicted by the group, it appears my thyroid levels have dropped to an underactive level.

So, I'm going to stop the Carbimazole and test again in 6 weeks.

I'll keep taking my Iron and magnesium.

Have bought a B complex but it seems to have made me feel awful so going to get one with lower dosages.

Looks like I'll need to add Vit D too.

Can anyone explain the antibodies to me, please?

I would be grateful for any other advice, too.

Thank you all again.

[pennyannie]

Hey there again :

OK - both thyroid anti bodies - TPO - anti-thyroid peroxidase and TgAB - anti-thyroid thyroglobulin are over range and so positive for a thyroid Auto Immune thyroid disease - commonly referred to as Hashimoto's thyroiditis.

With this thyroid AI disease your immune system systematically sets out to attack and disable your thyroid.

You may well experience ' hyper type swings in symptoms and thyroid hormone levels ' but these are transient and your T3 and T4 fall back down into the range without the need for the Anti Thyroid drug.

This AI disease only attacks the thyroid and /or eyes and given enough time the gland becomes too damaged to work effectively with you ultimately becoming hypothyroid and needing to take T4 - thyroid hormone replacement to replace what your thyroid once supported you with.

With Hashimoto's food sensitives seem to be a common trigger to upset the immune system and it's worth checking out such food stuffs as gluten, dairy, wheat :

I think I mentioned the work and research of Dr Izabella Wentz before - thyroidpharmacist.com

I think you are currently being treated for Graves aren't you ?

Your inflammation level at 3 is in range ( CRP ) but shows your body upset and think we have covered the low vitamins and minerals already in another post - haven't we ?

Are these NHS blood tests and your doctor / endo already in receipt of same as your diagnosis probably needs to be reassessed -

I think you did have Graves antibodies run - didn't you - and your reading was under the cut off and a negative - sorry I should have looked back for myself - which I'll do now !

[Opposite in reply to pennyannie]

Hello!

Don't apologise - this is great, thank you.

I was (mis)diagnosed with and am being treated for Graves. The antibodies were negative. So Hashimotos it is!

Now my thyroid isn't overactive, I feel better but I'm anticipating the drop into underactive territory and aiming to optimise vitamins etc before that happens. I will also look into food sensitivities.

These are private results, which I'll email to my Endo. Unfortunately, they weren't very receptive to the idea it's anything other than Graves, so I'm not expecting support until my levels drop a lot further. I will inform them I am stopping the carbimazole though.

I'm still awaiting my opthalmology appointment too. TEDct confirmed from pictures I sent that I am likely in active TED and to keep chasing for my appointment. I have added a Selenium supplement to the mix for this.

I think, thanks to you and the group, I now understand things well enough to start taking control. I just need to be ready for when I will need to start taking something to support my thyroid.

Thank you again. Please do let me know if you think I am missing anything.

[pennyannie in reply to Opposite]

OK - I just added into the above a mention on the CRP level -

you may well feel like this -

but it is actually an inflammation maker and at 3 shows your body ' upset and struggling ' :

I now aim to maintain my ferritin at around 100- folate 20 - active B12 125 ( serum B12 500++ ) and vitamin D around 125.

With a ferritin under 30 - the NHS need to rule out any other reasons - before you supplement -

Once your own natural metabolism returns after the AT drug is out of your system we then need to monitor your thyroid function again and the likely necessity to commence thyroid hormone replacement T4 - Levothyoxine.

I think you gave us all a clue with your forum name - with you trusting your gut !!

[Opposite in reply to pennyannie]

That's interesting, thank you.

I will aim for similar levels.

Really struggling with Thorne Basic B Complex though- have felt awful both days after taking it.

What am I asking the NHS to rule out?

I don't think my GP knows how to breathe without permission from my apparently-useless Endo.

I was told years ago I have pernicious aneamia. Is this not the cause of low ferratin? I have been taking iron supplements for years but stopped a week before the blood test.

My body is definitely struggling! I was just seemingly struggling more before treating the hyperthyroidism... but I understand this was temporary. It could have been underactive for years beforehand. I guess I'll never know.

My actual gut is the reason I came here for answers... Graves disease shouldn't make you fat 😂

I am finally losing the weight I've had for 4/5 years and as vain as it is, I think that's what made me stick with the carbimazole as long as I have.

[pennyannie in reply to Opposite]

Pernicious aneamia is low B12 and would expect you to have had a course of B12 injections and follow up injections to maintain your B12 level - and possibly why you had this adverse reaction to taking the Thorne B tablets - it can be an AI issue - ??

Low Ferritin can be low iron stores which is why it needs checking out first with an iron panel - and for me, it meant a colonoscopy and endoscopy- just in case something else is going on.

I too took Gentle Iron - but any iron bisglycinate will be kinder on the stomach and bowel,

I don't think you should be having to supplement iron for years - this is not normal ?

Seems to me you need both pernicious aneamia and iron deficiency aneamia investigations - as it could be that you have absorption issues and this needs sorting out as we need good gut function as this is where any thyroid hormone replacement medication, that you will need in the future, is absorbed, utilised and converted.

Yes, for most people the symptoms of hypothyroidism and a slowed metabolism creep up on them - with low levels of vitamins and minerals and weight issues being a common issue - as the body struggles to metabolise -

it's not vanity - and after a while you will learn where your T3 and T4 need to sit in the ranges for you to be well and metabolising -

and remember dieting is not recommended - but a full balanced healthy diet to include good fats is - otherwise the body senses ' starvation mode ' and will hang onto it's stores and down regulate itself - causing a slow down in the whole process of T4 to T3 conversion and a slower metabolism - and why when hypothyroid diets do not work long term except for the slimming industry.

The AT drug would have been blocking your own natural T3 and T4 thyroid production and slowing your metabolism and once it is fully out of your system you may already be hypothyroid -

Euthyroid levels would be a TSH at around 1.20 /1.50 - a T4 around midway through it's range with a T3 tracking just behind in percentage terms.

Is there a different doctor you could see at your surgery as it reads you haven't any confidence in who ever is treating you ?

[Opposite in reply to pennyannie]

I have never had b12 injections. Perhaps I'm wrong and it was iron deficiency aneamia.

After some Googling, I can't find any reason I have reacted badly to B vits. I still feel... almost slightly drunk and I took it first thing this morning.

With results technically in range, I'm not optimistic they'll investigate anything but I'll try.

I have just ordered a full iron panel privately. I don't have any confidence in the entire NHS at this point but I will go back to the surgery with the results of both tests.

The GP wasn't too bad until the Endo got involved and since then has just referred everything to them.

Thank you for all the information. My focus for now is going to be getting all these levels up.

[pennyannie in reply to Opposite]

In reply to your question further up - What am I testing for ?

I think you also need testing for celiac disease -

as both your low ferritin and B12 could be down to malabsorption issues -

caused by undiagnosed celiac disease which is common when diagnosed Hashimoto's AI thyroid disease.

[Opposite in reply to pennyannie]

I have tried to remain in denial about any food issues because I find it so hard as it is - but I guess it's time to bite the bullet!

I'll see the GP when my iron panel is done.

Thank you again - your advice may well be saving my life.

[pennyannie in reply to Opposite]

You need to check for celiac disease while still eating your normal diet which may include the questionable food stuffs :

[Opposite in reply to pennyannie]

That won't be a problem. I love the questionable food stuffs.

[TiggerMe Ambassador]

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[Opposite in reply to TiggerMe]

Thank you so much.

I ordered some vitamin D this morning but will try the above once I've used it.

I'll order the B now.

Excuse my ignorance but is Iron not the same as ferratin? I take a 'Gentle iron' because it causes stomach upset but perhaps I need to switch.*

*Excuse me, I followed the link and can see its still iron. I will switch to this, thank you very much

[TiggerMe Ambassador in reply to Opposite]

You are welcome 🤗 heme iron is gentle on the stomach and easy to absorb

Iron is confusing as a full iron panel checks iron serum and ferritin refers to what you have in store, though it can be misleading as it also rises with inflammation 🫤

[Opposite in reply to TiggerMe]

I have just ordered a full iron panel blood test too, to see where I stand.

In for a penny, in for a pound. Or lots and lots of pounds it would seem!

[SlowDragon Administrator]

These are private results, which I'll email to my Endo. Unfortunately, they weren't very receptive to the idea it's anything other than Graves,

Think they need to apologise ….

Or you need a new endocrinologist

[Opposite in reply to SlowDragon]

I think I'm going to see what I can do about a new one. I'm not expecting any admission of a mistake.

Are these results definitive proof I have Hashimotos or are they likely to fob me off with 'it's not black and white' again?

[SlowDragon Administrator in reply to Opposite]

If TSI and/or Trab antibodies are negative for Graves’ disease…..this is autoimmune HYPOTHYROID disease (aka Hashimoto’s)

Hashimoto’s frequently starts with transient hyperthyroid symptoms and results as damaged cells release excess thyroid hormones …..known as a hashimoto’s flair

After each flair thyroid becomes a bit more damaged and more hypo

vitamin levels all need work

Ferritin is deficient. GP should be doing full iron panel test for anaemia

Meanwhile increasing iron rich foods in your diet

Vitamin D, folate and B12 all insufficient

Don’t start more than one supplement at a time

Wait 10-14 days to assess before adding another

Starting with vitamin D, followed by separate magnesium afternoon or evening

Then a separate B12 ….followed by folate

[Opposite in reply to SlowDragon]

Thank you. I understand it's Hashimotos, I'm just concerned the Endo will not.

I was told I was aneamic years ago. I've been taking iron ever since. I have ordered a full iron panel and will take all these results to the GP.

Thank you for the supplement advice. I will follow that.

Magnesium is already part of my nightly routine.

I've ordered Vit D to start tomorrow.

I will look for separate folate and B12 to replace the B complex, which I don't think I can take. I feel awful from it. I'll wait 2 weeks between each.

[Opposite]

I've been reading all the advice I've received again, to check I'm following it correctly.

Update (partly for me to track things and partly for anyone reading who might find it useful) -

I forgot to wait 2 weeks between adding each supplement!

I was already taking magnesium, iron and selenium. I tried to add a B complex but have reacted really badly to three different types and given up for now.

I'm now taking -

Methylfolate and selenium first thing.

Vit D after breakfast.

Iron & Vit C after lunch.

Magnesium and B12 (spray) at night, alongside my Citalopram and Zopiclone.

I have stopped Carbimazole and Lansoprazole.

I know B12 should ideally be taken early but it gives me a terrible headache, so I'm taking it before bed. I also struggle to take iron without food.

I will wait a few weeks before adding anything else but I plan to find some way of adding the other B vitamins.

I have requested a Docs appointment to discuss possible absorption issues.

Unfortunately my full iron panel heamolysed and then they sent me the wrong replacement. I've decided to wait a few weeks before doing it again (mainly because my fingers are sore now!).

I plan to get the same tests as above done in around 6-8 weeks. I will update as I go! 🙂