subclinical Hashi, not medicated

[TheRightSide]

Hello, can anyone share me their experience dealing with subclinical Hashi (not medicated) and how long does it take until you get hypothyroid? My endo will not give me medicine cause my Thyroid function levels are still in the normal range (TSH, FT3, FT4) but clearly struggling. TPO is still >600. It seems like my doctors dismissed the Hashi symptoms and they wait until I'm hypo, which according to them we will not know when. What usually are the classic symptoms of Hashi getting worse because from what I understood some people might be asymptomatic for years. Do people with Hashi always have digestive/stomach problems as well? Thanks so much for the insights.

[SlowDragon Administrator]

welcome to the forum

What are your actual results and ranges

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

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

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

What are your most recent vitamin results

you know 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.

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

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.

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

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

[TheRightSide in reply to SlowDragon]

Thank you so much for all these informations!! It's hard to go strictly gluten free for me, I love breads and pastries, but slowly I tried to choose the sourdough or gluten free varieties now. I rarely consume dairy products except greek yoghurt. I'm also not a big fan of nuts and soys. I hope my boring and functional meals help me go through this. Are there any specific symptoms that I can notice that my thyroid is gradually getting worse? I notice that I have ridges in nails, hairfall, and feeling unpredictably super unwell everyday. Sometimes morning is fine today, but the next day is worse, and so on. Sometimes I feel headache like tension in my head, tired, anxious about health, breathless, dizzy spells, and so on, confusing and undescribable symptoms that doctors might think I need a psychiatrist.

[SlowDragon Administrator]

Gut issues extremely common when hypothyroid, caused by slower gut function, leading to lower stomach acid, bloating and frequently gluten intolerance

Low stomach acid can be a common hypothyroid issue

Thousands of posts on here about low stomach acid

healthunlocked.com/search/p...

Web links re low stomach acid and reflux and hypothyroidism

nutritionjersey.com/high-or...

stopthethyroidmadness.com/s...

thyroidpharmacist.com/artic...

How to test your stomach acid levels

healthygut.com/articles/3-t...

meraki-nutrition.co.uk/indi...

huffingtonpost.co.uk/laura-...

lispine.com/blog/10-telling...

Useful post and recipe book

healthunlocked.com/thyroidu...

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 as per NICE Guidelines

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

Or buy a test online, about £20

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

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

[greygoose]

I'm not sure you've completely understood how all this works. Neither the Hashi's itself, nor the antibodies cause symptoms. The symptoms felt are either from the resulting hypo - i.e. lack of thyroid hormones - or nutritional deficiencies.

Your immune system is slowly destroying your thyroid so that it becomes less and less able to make thyroid hormones. And there is nothing that can be done to stop it. That's why your doctor is not interested until you go hypo because there's nothing he can do. He cannot stop the attacks.

So, until your thyroid hormone levels go down past a certain point, there is no point in prescribing thyroid hormone replacement - your hormones don't need replacing, you still have enough (I'm guessing here because you haven't given your levels), and more is not better and can be worse and... it gets a bit complicated here, and I've just woken up.

Taking thyroid hormone replacement is not going to stop the progression of the disease. Obviously they shouldn't let you get too hypo before starting it, but starting it before you need it is not going to save your thyroid. The attacks and destruction will continue with or without it.

Having said that, your doctor should be concerned about your symptoms, and trying to find out what is causing them. He should be doing full thyroid testing:

TSH

FT4

FT3

vit D

vit B12

folate

ferritin

maybe zinc and copper

and early morning cortisol.

A lot of the tend to only test the TSH and that is just not good enough. You need the full range of tests. Only then will you know what your present thyroid status is. But don't blame him for something he can do nothing about.

[TheRightSide in reply to greygoose]

Thank you so much to you both  SlowDragon and  greygoose ! Lots of information in this community that I can educate myself too. I'm new to this and it makes sense that my endo told me doctors still had no idea what to do with autoimmune diseases. She said it could be just bad luck that I have it. 🙁 No one in my family has thyroid issues. I've been to so many doctors and explain all my weird and confusing symptoms.

Tomorrow I will do the blood test and I'll list all the things you've shared here. I'm curious about how my levels are now. I stopped the supplements of D3 and B12 almost 2 months ago, but I also never really take them religiously, sometimes I forgot. What I usually took was the multivitamin cause I thought everything is included.

Regarding the cortisol, my endo wanted me to stay overnight at the hospital so she could test my midnight and morning cortisol. I'm not sure if this is necessary. My GP on the other hand thought cortisol saliva is better and more accurate. I've done this last year, it's normal high.

After I get the blood test result I will share it here. So far my symptoms come from my stomach problems. I have both mild gastritis and esophagitis. PPIs didn't work, I trully couldn't stand the weird effects. And for the last couple of weeks I feel something in my throat and swallowing problem. I have no idea how all my symptoms keep adding up and it's so frustrating. My quality of life is decreasing now. I missed some of my son's school activities and skipped gatherings just because I was so unpredictably unwell. Seems like I'm getting depressed.

[greygoose in reply to TheRightSide]

What I usually took was the multivitamin cause I thought everything is included.

Well, yes - and no. They tend to use the cheapest ingredients in multis so they are not always bio-available. And, besides, there wouldn't be enough of anything to treat a true deficiency. These supplements are intended for the Worried-Well, who don't really need them, anyway. Not for people with nutritional deficiencies.

But, more worrying, are the things you don't need, like iodine, which could be making you worse, rather than better.

my endo wanted me to stay overnight at the hospital so she could test my midnight and morning cortisol.

Morning cortisol is essential to know, but midnight I'm not so sure. Think I would have done it, anyway, just to find out.

I have both mild gastritis and esophagitis. PPIs didn't work

Well, they wouldn't, would they. Because you're far more likely to have low stomach acid causing the problems, than high. But, the symptoms are the same. So you probably need to raise your stomach acid, not lower it. Try the burb test to find out:

To see if you have low stomach acid, try the burp test, you drink half a glass (4 ounces) of cold water with a quarter teaspoon of baking soda, on an empty stomach. Then time how long it takes you to burp. If it takes longer than three to five minutes, the theory goes, you don't have enough stomach acid.

[SlowDragon Administrator in reply to greygoose]

greygoose

Obviously they should let you get too hypo before starting it,

You meant

Obviously they shouldn’t let you get too hypo before starting it,

[greygoose in reply to SlowDragon]

Yup! Done it again!!! Missed out the negative. Honestly, I don't know what wrong with me. Do you think it's a hypo symptom? lol

Thank you for picking up on that, I'll correct it.

[TheRightSide in reply to greygoose]

Dear greygoose and SlowDragon Thank you so much for your responds. I've read your Thyroid stories. What a rollercoaster journey! I can't imagine how you endure all those years. All I can wonder is how amazing our bodies are. But I'm not sure if I can get through what will be next in front of me as the past years have been cruel and my symptoms are debilitating enough already. I have so much fears now. Even just a simple walk to do groceries can be a nightmare. I'm so afraid I will suddenly get worse, feel breathless, lightheaded, and that's it, I fear I will collapse and die. Other days I cried and cried why my life changed and I still don't feel better. I need to get through this emotionally and physically but it's just so hard.

[greygoose in reply to TheRightSide]

I honestly don't think you will collapse and die. Well, you might collapse from lack of oxygen but you won't die. And maybe then, doctors might start to take more notice. But I very much doubt you will collapse. And you must be very strong to have got this far, so I'm sure you are strong enough to continue.

Why did your life change? That's not a question I've ever asked myself because this has been my life for as long as I can remember. I can't remember a time when I was 100% fit and well. But it's also a question no-one can answer. Bad things happen to good people. It's no-one's fault, it's just that life is a lottery and we didn't get the winning ticket. But life goes on. And one day I'm convinced it will get better. Til then, try and take comfort in knowing that you're not alone. There are an awful lot of us going through this! We just have to stick together and try and give each other strength.

Just be kind to yourself, and tell yourself that none of this is your fault. You didn't do anything wrong. It just is. So, don't beat yourself up about it, get plenty of rest and indulge yourself as much as possible: cry if you want to, it gives release; eat chocolate if you want to, it satisfies the soul; have a long soak in a hot bath with a good book. These things won't solve or cure anything, but the occasional indulgence will make it easier to bear. Take care of yourself. 😘