Hashimoto diagnosis

[Crazylegs16]

I have just found out the I have Hashimotos Disease and am going down the rabbit warren of Google trying to research what it is. How to live with it? What I can do to help myself? And generally get my head around the fact I have it. Hopefully I might get some pointers on here of good places to look and read up as the doctors prescribed me levothyroxine and booked a scan of my thyroid and sent me on my way saying I needed to book another blood test in 3 months time.

[greygoose]

Well, that's all they can do, really. Did you already have a diagnosis of hypothyroidism?

Hashi's is the cause of hypothyroidism in many people. It's an autoimmune disease where the immune system attacks the thyroid, and slowly destroys it, mistaking it for the enemy. And there's absolutely nothing you can do about it except replace the hormone (levo=T4) that the thyroid can no-longer make enough of to make you well.

What can you do to help yourself? The first thing to do is to get your nutrients tested: vit D, vit B12, folate, ferritin. Hypos are very often deficient in nutrients due to low stomach acid. Your doctor can test them if s/he is so inclined. If not, you can get them done privately. They need to be optimal for your body to be able to use the hormone you're giving it. And, it doesn't matter how perfect your diet is, nor how much sunshine you get, if you're hypo you can be deficient anyway.

Did your doctor tell you how best to take the levo? For maximum absorption, it needs to be taken on an empty stomach - two hours after food, and one hour before food. Supplements and other medication need to be taken at least two hours away from thyroid hormone, some of them four hours away. But, it doesn't matter when you take it. Some people find it more convenient to take it first thing in the morning, others prefere to take it at night.

When you go back for your blood test, make sure the appointment is early morning - before 9 am, and before breakfast - and leave 24 hours between your last dose of levo and the blood draw. That way you get the highest TSH and the lowest FT4 (if that's tested).

And, if you have any questions, don't hesitate to ask them here, there will always be someone to answer you.

Most of all, don't worry. It sounds dramatic - Hashimoto's Thyroiditis - but basically it's not much worse that hypo caused by anything else. It's not going to kill you!

[Crazylegs16 in reply to greygoose]

I have not been diagnosed with Hypothyroidism as my T4 is still normal. My dad has had Hypo for 30 years so know a little about it but never realised that it was hereditary.

I also have other Autoimmune diseases which include Raynauds so malfunctioning in all directions 😂

I will look into getting my nutrients tested as that will be interesting to look at. I know I am now in vit D as I have to take that all the time even when the sun is shining!

Thank you so much for the advice on meds and having my bloods taken.

[greygoose in reply to Crazylegs16]

Well, if they've prescribed levo, that's pretty much the same as getting a diagnosis of hypo. They wouldn't prescribe it for any other reason. And, if you have Hashi's, even if you aren't technically hypo, you will be sooner or later.

And, it's not just about T4. It's also about TSH and FT3. When a doctor says 'normal', all he means is that it's somewhere within the range, but just being in-range doesn't in the least automatically mean that it's 'normal'. The ranges are too wide. Can you post all your results and ranges so that we can have a look?

Autoimmune diseases tend to hunt in packs, so, if you already have one or two, it's not surprising to get Hashi's. And, yes, it can be hereditary.

[Buddy195 Administrator]

Hello Crazylegs16 &welcome to the forum. Joining this forum, reading & following advice transformed both my physical & mental health, so rest assured, you are in good hands. Take it easy, there is a lot to take in/process.

Keep asking questions and reaching out as needed. We are here to help & support you 🦋

[Crazylegs16 in reply to Buddy195]

I am glad to hear that this page helped you. I need to have somewhere that I can ask those silly questions and hopefully get a reasonably sensible answer.

[FallingInReverse in reply to Crazylegs16]

Crazylegs16 welcome!

I remember being diagnosed. Over the phone, the doctor said, “…and you know you have under active thyroid…” in the middle of a long read out of stuff. I blurted out, “No! I didn’t know that! What does that mean?!?!?”

It took me another year of feeling terrible through poor treatment from a well intentioned but clueless doctor until I found this board.

Most of us are here for exactly the same reason. For me, and many many many others, there is no one else (family, friends, much less doctors) who have done as much as this board in clearing up confusion, laying fear to rest, regaining peace, calming our minds, and also giving genius rock solid guidance to understand our blood tests, meds needed, and med combo & dosage changes for the long term. those of us who hang around here have not been helped by whatever our doctors have suggested to us.

So ask all your questions! Study every answer from administrators (they know everything there is to know!), consider all posts from non-administrators in that context (we share our experience, but whereas there are many commonalities it won’t always be applicable for you individually!) We are all the same in many ways but also very different.

I’m happy you have found us so soon after diagnosis. My guess is you’ve just saved yourself months, if not years, of misguided medical treatment.

[SlowDragon Administrator]

Welcome to the forum

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

Also both TPO and TG thyroid antibodies tested at least once

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

What were your actual results and ranges

Was test done early morning?

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.

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

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

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

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 antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

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

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

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

[Crazylegs16 in reply to SlowDragon]

Attached is my Anti-Thyroid Peroxidase Antibody test results that were taken on the 27th April and were only discussed with me a 2 weeks ago because I asked what they meant! I only spotted them when I was looking at my test results to see how quickly my TSH levels were rising.

7th June

TSH = 5.4

T4 = 14.9

20th Oct

TSH = 6.36

T4 = 14.4

Any advice on the results would br gratefully recieved.

Blood Results

[Crazylegs16 in reply to Crazylegs16]

Range for T4 is 12.0-22.0 and range for TSH is 0.27-4.2

[SlowDragon Administrator in reply to Crazylegs16]

Confirms Hashimoto’s

[SlowDragon Administrator]

Has GP done coeliac blood test

If not, request they do so as per NICE guidelines

nice.org.uk/guidance/ng20/c...

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.

Most common by far is gluten.

Dairy is second most common.

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

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

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

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

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

Trying gluten free diet for 3-6 months. If no noticeable improvement then 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...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

Hashimoto’s and leaky gut often occur together

Post discussing gluten

healthunlocked.com/thyroidu...

[Lois71]

Take a look to protocol coimbra on internet

[Marz]

If you are on a phone - scrolling down to the heading - Topics - will reveal almost 4000 posts relating to Hashimotos. Hopefully there is some helpful info for you.

[TheAmaizing2023]

Hi, I am sorry to hear about your diagnosis. I have the same and it can turn life into a massive challenge. The good days feel fantastic though!!! 😍 I signed up for British Thyroid foundation where I did find a lot help and advise. There are also some experts available you can have a call with and go through your diet plan. This forum and BTF massively helped me. On top of that if you have the opportunity there are some fantastic private endocrinologist available who help to understand the condition and put you on optimal treatment plan.

Hang in there! Life is still beautiful!

[buddy99]

First of all, welcome and you have come to the right place. Over time I have received a lot of good advice here and much knowledge that I had not found with doctors.

I found the books by Izabella Wentz very helpful. One title is "Hashimoto's Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause". Very comprehensive. Unfortunately, despite all the good advice, you will have to still figure out what works and what is right for you. I have found that to be a lifelong task as the body and life's circumstances change. If you are not doing so now, you also will have to learn to advocate for yourself. And with more knowledge and the help of this community you will gain that confidence to make autonomous decisions in your best interest. I wish you all the very best and hope that this community will "get you on track" as fast as possible. We have some very helpful and knowledgeable admins here, but also others with a lot of experience.

[FrostyKnickers]

As a fellow Hashis survivor can I just say that Stop the Thyroid madness has helped me a lot. Janie Alexander Bowthorpe has written a book called Taming the Beast for us and it is brilliant!

[Crazylegs16 in reply to FrostyKnickers]

I like the line Hashis survivor as that makes me feel like I can come out the other side of this. I will look up the book recommended. Thank you for taking the time to comment. Feel like I have found a place I needed to.

[Crazylegs16 in reply to FrostyKnickers]

I love the start of your message "as a fellow Hashis survivor" as this makes me feel like there might be a tiny bit of hope that I can get through this.

[FrostyKnickers]

Hi CrazylegsYou can get through this. I now take T3 only as even though I'm gluten free and it does help, I still can't convert. No idea why, I look after my vitamins but still can't. It's fine though and I live a normal life, working and exercising moderately. I was diagnosed about 8 years ago after getting sicker and sicker with no diagnosis for 15 years. I wouldn't like to go back there