So fed up being undiagnosed! What is going on w... - Thyroid UK

Thyroid UK
109,277 members126,952 posts

So fed up being undiagnosed! What is going on with me?

heidie
heidie

Hi forum,

I suffered from postpartum thyroiditis after I had my son about 2 years ago. All my thyroid & antibodies levels were messed up when I was diagnosed with it. I was prescribed meds and got my TSH,T3 and T4 levels back to normal and stopped the medication since the thyroid levels were within normal range.

However, throughout these 2 years, I have had elevated antibodies (current results: T4 16.9, T3 5.0, TSH 1.82, Anti-thyroid peroxidase 205 & anti-thyroglobulin 364, ref range below 60 in both, elevated liver levels and mild neutropenia).Recently, my hair has been falling off a lot. On top of that, I am still tired, anxious, low mood, no libido, just feeling miserable constantly. How long is this going to last for me?

I went for a doctor and he prescribed some hair loss medication for me but nothing for my other symptoms. Also, I am not diagnosed with anything although I am pretty sure I have some sort of a thyroid disorder, perhaps hashimoto? Or maybe I am just slowly losing my mind? Can anybody help me to understand what is going on? The recent hair loss is making me feel really stressed out and the more I think about it, the more stressed I get. :(

11 Replies
oldestnewest

Anyone?

SlowDragon
SlowDragonAdministrator

If you have Hashimoto's, it's not temporary.

Levothyroxine needs to be taken continually. It's a daily hormone replacement. Not a medication that is stopped once levels are fine. The levels are only fine while taking Levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

How long since Levothyroxine was stopped?

Ask GP for full Thyroid and vitamin testing

All thyroid blood tests should ideally be done as early as possible in morning and fasting. (Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw.) This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

Hair loss is often low ferritin or sometimes low zinc.

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

heidie
heidie
in reply to SlowDragon

Hi,

Thanks for your reply! I was on beta blockers & methimazole for my hyperthyroidism phase that I had first, it then dipped to hypothyroidism and that is when all my medication was stopped. So basically, my postpartum thyroiditis dipped into hypothyroidism and after that it sort of resolved (TSH,t3 & t4 became normal, but antibodies stayed and have not disappeared). I had my thyroid levels tested just recently (as seen on my post above) and I have been tested for vitamins, folate & ferritin too and they were within normal range. I always do my thyroid tests in the morning as I have heard that is the best time to get the most accurate result. I do not have any food intolerances. The other things I forgot to mention were that I had gestational diabetes when I was pregnant and my mom has hypothyroidism and alopecia. So probably I am predisposed to thyroid illnesses because of my family background. It is just frustrating that I have no diagnosis but I have all the symptoms and antibodies :/

SlowDragon
SlowDragonAdministrator
in reply to heidie

Vitamin levels need to be at GOOD levels, not just within range

Do you have results and ranges to add?

You don't need any obvious gut symptoms to be gluten intolerant with Hashimoto's

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.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

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

thyroidpharmacist.com/artic...

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood

All the leading Hashimoto's doctors are based in USA, which is probably where you are?

heidie
heidie
in reply to SlowDragon

Hi,

Thanks for your reply! I live in Australia.

I tried to find my vitamin results but unfortunately couldn't find them at this moment, must have misplaced them somewhere. :/ However, I do remember them being normal and not on the lower range, more on the higher level of the range. I eat well and I already avoid gluten and use many gluten free products (such as bread, pastas, etc) as I have also read about the gluten-thyroid connection. I have also been tested for coeliac (negative), rheumatoid arthritis (weak ANA positive), diabetes (negative), testosterone levels (normal) so those I can tick off.

I just wanted to know that if I have had thyroid antibodies for the past two years, with constantly having symptoms, does it mean I am on the path of getting hashimoto or is this already hashimoto? I feel like the doctors are sometimes quite useless and atleast two of them have told me what I am feeling is completely normal since I am a mom now :/

You already have Hashimotos and it is usual for it to start with a hyper phase, often after a change in hormone status, like pregnancy., birth or menopause.

Thanks for the reply!

If I already have hashimoto, why haven't I been diagnosed with it? Or will the doctors wait until my thyroid levels are completely out of range? This is the dilemma I've been pondering about for awhile now :/ I think I would feel much better if I had an actual diagnosis.

Can't speak for Australia. In the UK, the GP would wait until your TSH is 10, or your free T4 under range and TSH over range. Can you see a different doctor?

This doctor that I'm seeing now is a thyroid specialist. He's just given me medication for my hair loss and suggested mindfulness and counseling as I told him I have low mood & anxious :/

Well, meditation will help your adrenals which come under a lot of stress from having to step to help (but TM/Twenty Minutes/Vedic meditation is a lot easier than Mindfulness/Buddhist).

Hi Heidie,

You are not alone! I live in Australia and was diagnosed with Hashimotis 2 years ago and got told it will all be fine! Until august this year I got very sick. Anxiety, lethargy etc. My antibodies are high. They started me on thyroxine but only a very very low dose and I'm now trying vitamins and about to start changing diet etc through a natrual dr. (been hard over Christmas) The Drs don't listen in Australia about auto immune diseases with the thyriod!

You have to jump up and down for ages!! If you can see if there is some sort of natrual Dr around you can go and see. It's the only way to go with auto-immune! I'm still not better!

You may also like...