Learning about my condition!: Hi all, apologies... - Thyroid UK

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Learning about my condition!

Zyrah_7 profile image
14 Replies

Hi all, apologies if this sounds silly but what is the difference between Hashimotos and Hypothyroidism?

I got diagnosed with an under-active thyroid when I was a pre-teen and have just been taking levothyroxine. I do blood tests annually, but I was recently advised by a friend that the blood test should be taken on a day I haven’t actually taken my thyroid medication?! I am currently on 125mg.

It did get me thinking though, I don’t feel I question the doctor enough and I have been sitting in ignorance. How do I know what kind of Hypothyroidism I have? Could it be Hashimotos?

Any advice would be amazing. Thank you!

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Zyrah_7
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14 Replies
SlowDragon profile image
SlowDragonAdministrator

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once, usually at diagnosis to see if your hypothyroidism is autoimmune

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Very important to test vitamin D, folate, ferritin and B12 ideally at least once year minimum

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Zyrah_7 profile image
Zyrah_7 in reply to SlowDragon

This is absolutely AMAZING! Thank you so much this has been so helpful! I have access to my blood test results on PatientKnowsBest, but unfortunately I’m just so uninformed I don’t know what I’m looking at exactly!

I will review my blood tests and have to research every single result. Thank you again!

TopBiscuit profile image
TopBiscuit in reply to SlowDragon

I've had coeliac disease since my 20s and hypothyroidism (diagnosed, that is) since my mid 30s. I'm now 67. I've never thought about the hypothyroidism being auto immune until I started reading about it on this forum. I just asked my endo last week if it's confirmed auto immune or not but unfortunately because I was diagnosed over 30 years ago and while living in the US - I came back to the UK in 2002 - there's no way of checking but she did say that in her view it very likely is auto immune as I already have another auto immune condition (coeliacs).

I too was wondering what difference this knowledge might make to my management of my condition? I'm on levo and T3 as I'm a poor converter - though it took 20+ years for anyone to figure that out! I was diagnosed with low Vit D some years ago so I take 2,000 iu per day and I did take B12 for a good while as I wasn't at optimal levels of that though within range.

Zyrah_7 profile image
Zyrah_7 in reply to TopBiscuit

Interesting you say that, my mum also has coeliac disease and she also has hypothyroidism. Our hypothyroidism runs in the family for sure because all of siblings, parents & grandparents have this condition unfortunately!

I did consider at one point if I had coeliac disease or any gluten intolerance but not too sure how it gets diagnosed?

TopBiscuit profile image
TopBiscuit in reply to Zyrah_7

Well, the only 100% sure fire way of diagnosing coeliacs is via an endoscopy where a sample is taken from the lining of the intestines. There is a blood test, which seems to be the way that most diagnoses are made these days but I personally have another condition called Immunoglobulin A deficiency which will give a false negative to the blood test, and I do wonder if that's the reason why it took over 20 years to diagnose me despite the fact that I had very obvious symptoms.

And just to clarify, coeliac disease is not a food intolerance at all. It is an autoimmune disorder where the body attacks itself when explosed to even minute levels of gluten, and it strips the lining of the intestines causing major problems. It can take the intestines up to 3 months to recover from one exposure to gluten.

Coeliac disease is very hereditary also, though no-one in my family or extending family has it. Or hypothyroidism either, for that matter. I'm special :)

Do you have any symptoms that you're aware of?

SlowDragon profile image
SlowDragonAdministrator in reply to Zyrah_7

Interesting you say that, my mum also has coeliac disease and she also has hypothyroidism. Our hypothyroidism runs in the family for sure because all of siblings, parents & grandparents have this condition unfortunately!

So it’s virtually guaranteed that your hypothyroidism is autoimmune

And highly likely gluten free diet may help or be essential even if not actually testing positive for coeliac disease

Zyrah_7 profile image
Zyrah_7 in reply to SlowDragon

That’s interesting,

Although I’m not sure I am experiencing the symptoms whenever I eat gluten? At one point in my life I’d say I didn’t have the best reaction to dairy or gluten, more so dairy. I’d get quite a lot of stomach pains, TMI but wind and indigestion kind of pains but I don’t really get that anymore? Hmm

Charlie-Farley profile image
Charlie-Farley

Hi there Zyrah 🤗

Well most of us are common or garden Hashimoto’s 😬😂.

I would really advise you to get a good book and read (at your own pace) take you time new subjects take a while as we all well know. The website Thyroid UK has lots of info and advice and I would certainly say it is so good to have a good old read on there before anything else.

Are you feeling well (hope so!) many people land here because they have or are having problems.

When having a blood test it is best to take medication after test and to get an early as possible blood draw (fasting) it gives the best results to get a clear idea as to how you are doing- but symptoms should be considered as well.

NHS do not do a complete test in fact I would go as far as to say it is bald. Most of us get private bloods done - info on the website. 😉👍

TSH has a circadian rhythm and lowers in the afternoon so if you have taken your medication and your TSH lowers and then you have a blood test, this can potentially skew results and lead a doctor to think you are over medicated and at this stage it is worth mentioning BIOTIN 😱

Biotin is great, but it can skew the results of a blood test so any supplements with biotin so should be avoided, some say at least four days but if you take a lot a week might make sense.

Have you any particular concerns and do you feel ok on your current dose?

Zyrah_7 profile image
Zyrah_7

Hi Charley!

Thank you for your response! Honestly, day-to-day I feel well. I have been feeling a bit more lethargic the past few weeks but nothing too major. I joined this forum to hopefully get some insight about my condition and get to know others who are also going through the same thing as me, and so far so helpful!

Unfortunately, I have PCOS and recently-ish diagnosed with T2 diabetes (don’t think the PCOS helped there) so now whenever I do feel any kind of symptom I have no idea which condition it might be to do with? Could be all for all I know!

Currently facing extremely irregular/lack of menses. My last cycle was back in November 2023. Not sure if this is linked with PCOS, or my hypothyroidism as unfortunately lack of periods are a symptom of both 😞

I think I need to definitely look into getting private blood work done, just need to look through and see how to actually go about it! I don’t take any Biotin actually! I am experiencing hair loss but again, which condition of mine does it relate to?

A part of me always puts any symptom of mine down to PCOS and T2 Diabetes but who knows, I am probably neglecting my thyroid health too!

I am taking 125mg of levothyroxine, 500mg of metformin and vitamin D3/k2 (when i can remember🫣)

Last November my GP did put me on Iron tablets! Thanks for your response I look forward to more! ◡̈

SlowDragon profile image
SlowDragonAdministrator in reply to Zyrah_7

PCoS and Hashimoto’s frequently linked

healthcentral.com/condition...

ncbi.nlm.nih.gov/pmc/articl...

Stourie profile image
Stourie in reply to Zyrah_7

Hi, whatever you do please don’t tell your doctor that you haven’t had your levo that day. They’ll probably want to do another test with you taking meds before. Jo xx

Pippah45 profile image
Pippah45

When they arrange the blood test just ask for an early morning test and take your levo after. A doctor who knows anything about thyroid should have told you this but that is typical. I also have hashishimots and they never told me. I only found out by ru ning my blood tests in a thyroid group like this one!

serenfach profile image
serenfach

If you like, get your blood results and then come back here with them, and we can see if you need help in any area. This forum is brilliant - the knowledge, the understanding and the support has helped change my life.

Zyrah_7 profile image
Zyrah_7

Thank you, I will!

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