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[4youreyesonly]

Hello, hoping for a little advice. I have had thyroid symptoms for a long time and high antibodies but always within range.A few years ago tosh slightly raised so dr said I could try a low dose of thyroxine .After a year I stopped as I was losing too much weight.It is compounded by the fact I also have a connective tissue disorder which has similar symptoms.So recently I started losing my eyebrows having lost all body hair a few years ago ( not on head) and terrible constipation. I decided to have a private blood test ,Results: Tsh 7.44. T3 5.2 T4 15.7 Antibodies TA 419 and Tpa 186 .Would you advise trying thyroid meds again .Many thanks.

[shaws Administrator]

When we have a blood test for thyroid hormones, the recommendation is to get the earliest possible blood draw. It is a fasting test (you can drink water) and when on thyroid hormones we take the hormones 'after' the blood draw - not before.

We also have to put the ranges of each one - ranges are in brackets after results.

Ranges enable members to respond as labs differ in their machines.

Your TSH is high but the NHS states that it has to reach 10 before a diagnosis is given. When prescribed levothyroxine take it on an empty stomach with one glass of water and wait an hour before eating. Food can interfere with the uptake of thyroid hormones.

Also request GP to test B12, Vit D, iron, ferritin and folate.

If you want to edit anything in your post, click on the down arrow next to 'More' and select edit.

[4youreyesonly in reply to shaws]

Many thanks for your reply.I do have the ranges.Tsh 0.27 -4.2 T3 3.1 -6.8 andt4 12-22 hope this helps .

[shaws Administrator in reply to 4youreyesonly]

Your TSH is too high but doctors wait until TSH reaches 10.

The following is recommended to get the best results possible.

It is a fasting (you can drink water) and allow a gap of 24 hours between the last dose of thyroid hormones and the test and take afterwards.

Also request GP to check B12, Vit D, iron, ferritin and folate.

[Charlise in reply to shaws]

Hi theresorry to hear about your condition and the adverse effects thyroxine however it does sound as though you might consider going back on the thyroxine however they have formulas that contain both T3 and T4 hartman that might be more customized to your condition

there is a suspicion that I have a mixed connective tissue disorder but it has not been confirmed I am waiting myself until my TSH goes back into range and having been on thyroid for a month to see if my symptoms subside that might indicate connective tissue disorder

Hashimoto is an auto immune disease so I'm not sure if that has caused the autoimmune marker are impaired to be a little elevated

oh yes your thyroid readings are very out of range so I hope you can find someone who might prescribe a different type of thyroid medication more specific to your needs

[4youreyesonly]

Do they not take into account the high antibodies

[shaws Administrator in reply to 4youreyesonly]

Some doctors might but I doubt the majority of GPs have any clue about antibodies.

[4youreyesonly in reply to shaws]

Thanks.If he did ,would it do me harm to give it a go or would I have too much t4 floating around

[shaws Administrator in reply to 4youreyesonly]

T4 doesn't 'float around'. It is supposed to convert to T3.

[4youreyesonly in reply to shaws]

Obviously as you can tell,I’m new to this so I thank you for your time and patience.would it up my T3 too much then

[DippyDame]

Do you have ranges ( numbers in brackets) for those tests?At what time was the blood draw taken for these tests? Ideally close to 8.30am and before taking food or drinks other than water.

If you are hypothyroid then replacement hormone is for life...you don't start and stop it and treat it like ( for example)paracetamol!

I suspect you were given a starter dose of 50mcg levothyroxine

Did that GP retest after 6/8 weeks to monitor the dose re increase.

Your dose was very likely incorrect!

Lab results in range do not indicate a correct dose, this is a common misconception amongst many medics

Instead, your results need to sit at a point within the range where you feel well!

I guess this wasn't the case with you.

We are all different so that point varies for each person.

TSH is high, but some medics won't treat until it reaches 10.

Until we have lab ranges it's difficult to be sure about medication, but I'd guess you need to be medicated!

Loss of weight is not a hypothyroid symptom but it can be related to connective tissue disorders

The antibodies above don't relate to thyroid disease

Suggest you have a full thyroid test to include -

TSH, FT4, FT3, folate, ferritin, vit D, vit B12 and thyroid antibodies TPO and TG

thyroiduk.org/thyroid-funct...

It looks as if , and as you say, you are coping with separate conditions and that full thyroid testing will help to untangle their related symptoms

Just a few thoughts

Good luck

[4youreyesonly in reply to DippyDame]

Thanks,my antibodies are related ,I had them done in the blood test:TG 419 and TPO. 186

[DippyDame in reply to 4youreyesonly]

Sorry, I couldn't understand what you meant by this... Antibodies TA 419 and Tpa 186

So, TG not TA and TPO not Tpa

A gluten free diet helps many with high antibodies/thyroid autoimmune disease.

You'll soon get the gist of it all...we've all had to start at the beginning!

[tattybogle]

shaws , NHS do (sometimes) diagnose and treat hypothyroidism before TSH gets up to 10.

The difference in the guidelines is that if TSH is over 10 they 'will' treat.... but if TSH is 'over range but under 10 (on 2 occasions, 3 months apart)' then they 'may consider ' treating.

In the case of 'TSH over range but under 10 ' (assuming fT4 is still in range ). it is termed 'sub-clinical ' hypothyroidism by the guidelines.

if symptoms of hypothyroidism are causing problems . they can 'consider a trial of levothyroxine' .

Antibodies are considered in NHS guidelines. (If they thought to test them !)

Over-range TPOab makes it more likely that they feel confident to start treatment of 'sub-clinical' hypothyroidism.

In-range TPOab makes it less likely they will treat 'sub-clinical' hypo.

NHS opinion is 'the presence of over-range TPOab means it is more likely that the sub -clinical hypothyroidism (over-range TSH /in range fT4 ) will eventually progress to 'overt ' hypothyroidism' (over-range TSH / below-range fT4).

So since they are pretty confident they might need to give you Levo at some point in your life anyway .. they are more prepared to give it sooner if symptoms are causing problems . (even if TSH isn't yet over 10 , and even of fT4 is still in range)

I was treated by NHS GP with TSH 6.8 [0.36-4.1] (rising from 5.7 at 1st test)

My Total T4 was still in range at 29% , ( falling from 32% at 1st test ).

They then did my TPOab , and because they were significantly over-range and had symptoms that were impacting my ability to work .. i was started on Levo.

So when TSH is 'above range but below 10 '.. starting treatment is somewhat up to the discretion of the individual GP.

My TSH was rising , and my Total T4 was falling . and my TPOab were ridiculously high, and i'd been in about once a month for the previous 6 months with increasingly worse symptoms that has started 4 yrs previously after a pregnancy .. and i had some family history of thyroid disease.

If my antibodies had been 'only just over- range' . or if my 2nd TSH has been a bit lower than the first ... then i imagine i might not have been offered treatment at that point .

But the current NHS guidelines are very clear on treatment of 'sub-clinical' hypothyroidism

If ~ 2 x over-range (but under 10) TSH tests (taken 3 months apart )

and ~ symptoms of hypothyroidism are causing problems.

~Take into account if there are raised TPOab

~ Then a trial of Levothyroxine to see if getting TSH into range resolves symptoms 'may be considered'

nice.org.uk/guidance/ng145

[4youreyesonly in reply to tattybogle]

Really helpful information for me, thank you

[4youreyesonly in reply to tattybogle]

Can I ask what dosage you are on and has it helped

[tattybogle in reply to 4youreyesonly]

spent the first 15 yrs on 150mcg .. (after about a year of adjusting up through 50 /100mcg doses first )Then 3 yrs on 125mcg .

and over last couple of years i've been on 112.5mcg ,then 100mcg (not enough ), back to 112.5mcg.

Only ever felt about 75 % better, no matter what dose . never 100% .... but might have done a whole lot better if i'd been able to talk to to other more knowledgeable thyroid patients like you now can on here .

GP's always said my thyroid was 'treated now '. and any remaining problems were 'something else (ie. in my head ). Only found my way to this place about 2/3 yrs ago... but i was already pretty much retired by then even though i'm only 55.

[Charlie-Farley]

Hi 4youreyesonly

tattybogle shaws me too, my TSH was well over range , but not near 10. I had been rough for months and we were in midst of ‘Covid’ so doc ordered a scan got report of minor changes back and with my symptoms agreed to treat.

That was great! However, thereafter stuffed up because I was left on 25 µg of levothyroxine for 6 months (made very ill) because she said I was “in range”.

Fact of the matter is I was “in range” at every stage getting to full therapeutic dose. The only thing that changed re blood tests was where I sat in the range. My symptoms fell away one by one as my dose increased, constipation and leaky bladder were the last to go. There you are over sharing again 😂

Got genned up by this forum and fought my corner. The levels if ignorance in the medical profession are appalling. Only one stood out through our conversation as being aware he didn’t know as much as he needed to and bless him, let me take the lead after a bit of discussion. The others I just bombarded with spreadsheets, data and scientific paper references, they knew it would take more than ten minutes to go through! 🤣🤣🤣👍

Reading other peoples’s lived experience has been pivotal in deepening my understanding. I read most days…..

[4youreyesonly in reply to Charlie-Farley]

Hi, I will at some point get myself to the drs ,I’ve had to push for other things ie diagnosis of auto immune connective tissue which was missed for a long time .I too am having trouble with bowel and bladder so maybe that could have something to do with thyroid.Thanks for your reply to a newbie

[Charlie-Farley]

I’m a relative newbie too 😊👍. All I can say is read around the subject and get informed - it won’t take you long to get up to a level. With any subject it is immersion. For me it’s like chucking mud at a wall eventually enough sticks to make a difference- still learning 😊👍 diagnosed in August 2020.

[SlowDragon Administrator]

Tsh 7.44. (0.27-4.2)

T3 5.2 (3.1-6.8)

T4 15.7 (12-22)

Antibodies TA 419

Tpa 186

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

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 never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

Was this test done early morning?

This gives highest TSH

With TSH over 5 and high thyroid antibodies and symptoms you should be prescribed levothyroxine

See flow chart on top of page 2

gp-update.co.uk/Latest-Upda...

Standard starter dose of levothyroxine is 50mcg

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Typically dose levothyroxine is increased slowly upwards in 25mcg steps until TSH is ALWAYS under 2

How much levothyroxine did you take previously

Was dose increased, if yes how high

See GP and request a repeat thyroid test 6-8 weeks after this first private test

Have you had vitamin D, folate, ferritin and B12 tested

If not, request these are tested NOW

You need coeliac blood test done too

Low vitamin levels are EXTREMELY common when hypothyroid especially with Hashimoto’s

Connective tissue disorder…..do you mean Elhers Danilo’s syndrome EDS

We have many EDS members, it’s linked to Hashimoto’s.

Many, many EDS members find strictly gluten free diet helps or is essential…..but get Coeliac blood test done BEFORE considering trial on strictly gluten free diet

[4youreyesonly in reply to SlowDragon]

Please could you tell me why test for cealiac,

[SlowDragon Administrator in reply to 4youreyesonly]

Test for coeliac If not already on gluten free diet

you have high antibodies this is known by medics here in UK as autoimmune thyroid disease.

Technically it’s Hashimoto's (with goitre) or Ord’s thyroiditis (no goitre).

Both variants are autoimmune and more commonly just called Hashimoto’s

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 a further 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

Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out

NICE guidelines are clear anyone with autoimmune thyroid disease should be tested for coeliac when first diagnosed

If GP won’t …

lloydspharmacy.com/products...

If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)

If coeliac result is negative can consider trialing strictly gluten free diet for 3-6 months.

Likely to see benefits. Can take many months for brain fog to lift.

If no obvious improvement, reintroduce gluten 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.

[4youreyesonly in reply to SlowDragon]

Your information has been great.One thing I forgot to mention was I also have a shrinking thyroid which showed up on a ultrasound ,something else for the dr

[SlowDragon Administrator in reply to 4youreyesonly]

That’s Ord’s thyroiditis where thyroid shrinks and shrivels up

A common form of Autoimmune thyroid disease

[nellie237 in reply to 4youreyesonly]

Hi 4youreyesonly,

NICE advise testing for coeliac at diagnosis of autoimmune thyroid disease.

1.1 Recognition of coeliac disease

1.1.1Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

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

Having said that, I tested negative at Hashi's dx, but positive 13yrs later. It takes an average of 13yrs to get a coeliac dx.......so I guess I'm pretty average. lol.

[SlowDragon Administrator in reply to nellie237]

I tested negative twice for coeliac ….once 4-5 years after Hashimoto’s diagnosis, 2nd time 20 years later….endoscopy showed severe damage as if coeliac ……DNA test said probably not coeliac…..

end result is same ….gluten free diet has been astounding improvement