Hashimotos... what's the difference?

[EmmaGiggles85]

When I was diagnosed about 7yrs ago with Hypothyroidism, I was left in the dark about this what it was and how I'd be affected. I have had to try and research all the information I have on my own or by speaking to some of you lovely people!! Well, I've just been on the phone with a new Doctor who has just told me that I should have been told 7years ago that I actually have Hashimotos thyroiditis. Although I've heard of this, I don't know much about it. Is this better news? Or worse? All I know is that it is an auto immune disease... I dont know if I have Hashimotos as well as Hypothyroidism... or whether that's even possible. I don't know what to think tbh. Xx

[tattybogle]

basically...in your case it means 'Hypothyroidism' is the state you end up in(ie. not producing enough thyroid hormone), and 'Hashimoto's Disease' is the cause of it.

Hashimoto's (autoimmune hypothyroidism) is the most common cause of hypothyroidism in UK nowadays.

(There are other causes of hypothyroidism that are not caused by your own immune system attacking the thyroid)

But because your cause is autoimmune, all the other information you see here regarding possibly doing better on gluten free diet , and checking vitamin levels is relevant to you.

And the autoimmune nature means that swing's in thyroid levels are not unusual ..Sometimes it starts with a slightly 'hyper' phase (but it's not true hyperthyroidism ) ...then as the thyroid is attacked , it dumps extra thyroid hormone into the blood all at once , and it's then gradually used up and the bit of thyroid that was attacked is then dead so you have less thyroid hormone production than before.

[tattybogle in reply to tattybogle]

i've just realised you are the person that had the 'normal' TSH of 13 ! and no increase.

.............I'm really relieved you've found a 'new' doctor

[EmmaGiggles85 in reply to tattybogle]

Yes thats me haha!! Sorry I should have said!! My level went to 21 in Jan, so knowing he's actually going to keep an eye on me is reassuring now xx

[humanbean]

It's probably neither better nor worse news.

Approximately 90% of people diagnosed with hypothyroidism in the UK have Hashimoto's Thyroiditis (Hashi's), so you are in good company. Hashi's actually causes hypothyroidism, and it is referred to as primary hypothyroidism.

Other possible causes for hypothyroidism include being low in iodine, but that tends to occur in Asian countries (and possibly Africa too? I'm not sure about that though) and other parts of the world, not the US or Europe.

There is also secondary / tertiary / central hypothyroidism which occur as a result of damage, disease, tumours affecting the body's output of TSH from the pituitary. In these cases the thyroid may actually be completely healthy.

Depending on the cause of hypothyroidism the effects on the patient can be different. Hashi's, for example, tends to be progressive and get slowly worse over the years.

Depending on why TSH levels are too low, secondary / tertiary / central hypothyroidism might or might not be progressive. It sounds good if it isn't progressive - but since doctors diagnose on the basis of TSH it can take a very long time to get a diagnosis and this can leave people struggling for decades.

All I know is that it is an auto immune disease... I dont know if I have Hashimotos as well as Hypothyroidism

You are hypothyroid because you have Hashi's.

Hahsi's being an autoimmune disease causes problems for a couple of different reasons...

1) The condition can fluctuate, so that patients will be very hypothyroid some of the time, and on occasion they may be mistaken for being hyperthyroid. But the hyper situation may only last a few days or weeks before the patient becomes hypo again. Eventually, damage to the thyroid gets so severe that the patient ends up permanently hypothyroid.

2) Once someone has one autoimmune disease their risk of getting a second autoimmune disease becomes higher than it is for healthy people with no autoimmune disease.

[EmmaGiggles85]

Fantastic Information yet again! Thanks guys!! This is so much clearer now. Really appreciate your help xx

[SlowDragon Administrator in reply to EmmaGiggles85]

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

Low vitamin levels affect Thyroid hormone working

Poor gut function with Hashimoto’s 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

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

healthcheckshop.co.uk/store...?

Assuming coeliac 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...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/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

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

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.

[SlowDragon Administrator]

Looking at previous posts you have had extremely high TSH, despite being on reasonable dose levothyroxine

Lactose intolerance and gluten intolerance are both very common with Hashimoto’s

Lactose intolerance often results in needing higher dose levothyroxine than typical

What dose levothyroxine are you currently taking

Do you always get same brand of levothyroxine

Which brand

Low vitamin levels are extremely common with Hashimoto’s What vitamin supplements are you currently taking

What are your most recent results and ranges

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

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

Is this how you do your tests?

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

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

[EmmaGiggles85 in reply to SlowDragon]

Thanks!!! I am currently on 175mg Levothyroxine as he gave me an extra 25mg 5 weeks ago. The new 25mg levothyroxine tablets he gave me are NorthStar, but the 150mg ones I have taken for years are Accord. I am taking 40,000iu Colecalciferol tabs for my Vitamin D deficiency. 322mg of FerroEss iron tabs twice daily, and 5mg of Accord folic acid tablets daily. These vitamins are to carry on for 6months. I have now started on metformin too. I do take my tests in the morning now like you've suggested. I am going to do a private test for the T3 as the doctor said he won't do one as T3 is apparently irrelevant for someone with Hashimotos as the levels fluctuate so often... xx

[tattybogle in reply to EmmaGiggles85]

" said he won't do one as T3 is apparently irrelevant for someone with Hashimotos as the levels fluctuate so often..."I could say something about that opinion... but it would be rude

unless you are taking exogenous T3 (from tablets) which does cause up's and downs in fT3, then actually the natural fT3 level is the one that maintains the most stability out of TSH/fT4/ ft3 .

the body has several mechanisms of maintaining a stable T3 level and it tries it's utmost to do this even when all else around it is failing, or wandering around.

There are studies that prove this, Can't think of which one off the top of my head , but they definitely exist.

If T3 is "irrelevant for hashimoto's as the levels fluctuate so often" then so is their beloved TSH test, since any fluctuation in fT3 /4 obviously affects TSH too

[EmmaGiggles85 in reply to tattybogle]

Yep, that's what he also said, that I shouldn't even take any notice of the TSH levels as they fluctuate! So I was left feeling g really confused. He told me that in actual fact, 7 years ago when I was diagnosed, my TSH level was 96!!!! Xx

[tattybogle in reply to EmmaGiggles85]

Oh i see,

so let me try and get my head round his logic ......

T3 is too variable to be useful. (i disagree, if on no meds or levo only ,it's very stable)

TSH is too variable to be useful (i sort of agree.. just using TSH for dose decision does have problems , it IS useful , but should be looked at in relation to fT4 /3 and also the trend of TSH for that particular individual)

So if he ignores TSH , doesn't do T3 . presumably he also sees fT4 as equally variable as T3 and TSH, then on what basis does he decide what to do with you ?..

have you found the holy grail ?

ie, a man who listens to your actual experience of symptoms ? and is not bound by the "TSH tells us everything " school of doctoring ?

It could be that he understands hashimoto's better than most doctors and has an understanding of the limitations of TSH, and so that 's why he's said about the fluctuating levels.

If so you should hang on to him.

(I realised half way through writing this ,i was about to 'go off on one' questioning his logic on fT3 , before it dawned on me that he might actually be OK... we see so many unknowledgeable doctors on here , it becomes hard to believe any one in the NHS actually understands this at all.)

P.s Even for someone who knows not to put too much faith in TSH....96 is way up there.