Diagnosed Hashimoto's Thyroiditis 20 years ago. TPO count over 2000. TPO 2018 count still over 2k. If TSH is in range is TPO ignored?

[Shylton]

2k TPO antibodies TSH normal is that OK

[greygoose]

There is next to no connection between TSH levels and antibody levels.

High antibodies just show that you have Hashi's - Autoimmune Thyroiditis. And, there is very little you can do about it.

As for TSH, if it is in the so-called 'normal' range - which isn't always normal at all - the doctor will not treat you for hypothyroidism, even if it is high in range.

Hashi's will eventually destroy your thyroid, and your TSH will rise. And, according to the NICE guidelines, when the TSH is over-range, coupled with high antibodies, the doctor should put you on thyroid hormone replacement (levo). But, taking levo will not affect your level of antibodies. It will just replace the thyroid hormone that your thyroid can no-longer make enough of to keep you well.

[Shylton in reply to greygoose]

Thank you for the info. I was doing OK till I gave up smoking 13 years ago and I haven't felt well since! Which includes serious shortness of breath, aching joints and muscles cramps, and nerve spasms. So much for being a non-smoker.

[greygoose in reply to Shylton]

Oh, often happens! Smoking tends to mask hypo symptoms. Don't know why, but I did read somewhere that nicotine increases the supply of T3 to the brain. Unfortunately, I've lost that link, and can't remember where I saw it.

[SlowDragon Administrator]

How much levothyroxine are you currently taking

When were thyroid levels last tested

Essential with Hashimoto’s to regularly retest vitamin D, folate, ferritin and B12

When were these last tested

What vitamin supplements are you currently taking

Have you had coeliac blood test done

Are you on absolutely strictly gluten free diet

Many Hashimoto’s patients find strictly gluten free diet helps reduce symptoms, and might slowly reduce thyroid antibodies

[Shylton in reply to SlowDragon]

Thank you for your reply.

*100mcg Levo.

*Just had TSH tested and its in range 3.37mu/L

*Vit D 2000 unit once a day

*Vit B injection every three months but I have asked that I have injection every two months as I have noted a pattern in my muddled thinking and forgetfulness in the month before injection due. GPs said that NICE guidelines are for every three months. As I was worried about my muddy forgetfulness I asked to be tested for Dementia but that came back negative.

*Along with the prescribed vitamins I also take multivitamins with iron once a day.

*I did not know about a gluten-free diet however I make (or buy) my own sourdough as yeast-based products make me feel bloated.

*In the last 4 or 5 months I have been have nerve spasms (feels like nerve, anyway). I first noticed with the index finger of my right hand - it would suddenly tap my tablet screen and take me to a new page. It is now sudden jerks of my arms and shoulders and hand tremors when holding something ie my kindle for reading my book.

*I am now also getting muscle cramps in the night.

*I have AS and that has deteriorated significantly in the last few months.

My Thyroid gland is constantly swollen and by the end of the day I feel it is choking me.

I think I just want to make sense of what is happening to me.

I also think that the GPs are tired of dealing with me!

Your reply is much appreciated it and I will amend my diet to gluten-free and see if the makes a difference.

Thank you

[SlowDragon Administrator in reply to Shylton]

Approx how much do you weigh in kilo

TSH is far too high for someone on levothyroxine

Request 25mcg dose increase in levothyroxine

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

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

(That’s Ft3 at 58% minimum through range)

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor



please email Dionne at

[e-mail]

[SlowDragon Administrator]

Just testing TSH is completely inadequate

Suggest you get FULL thyroid and vitamin testing done 6-8 weeks after you get dose increase in levothyroxine up to 125mcg daily

Do you always get same brand levothyroxine at each prescription

If yes….Which brand

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

Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

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 all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

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

bluehorizonbloodtests.co.uk...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

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

[Shylton in reply to SlowDragon]

So much info. GP won't do a full test, they will just do TSH as they said it was all that was required according to NICE. I will investigate and use one of the options you have listed above.

Always same Levothyroxine manufactured by TEVA UK.

I have always taken my Levo and eaten normally on blood test day as I was told I didn't have to change that. In the future, I will not take Levo or eat before the test. Thank you.

[london81 in reply to Shylton]

when my tsh was 4 my free t4 was only 4 percent in range so my free t3 was probably below range. i felt like you do and had a really sore throat as we i went with private testing and i’m now 7 years on , taking NDT etc so don’t give up xx

great advice above xx

[Shylton in reply to london81]

I think that I slipped through the loop of knowledge when it came to my own diagnose. It took a few years to get diagnosed with Hashimoto's in early 2000 shortly afterwards I moved out of the area and had a new GP. For some reason or other they didn't list it as Hashimoto's but as an underactive thyroid. Therefore it was not till 2018 that my GP retested me and again I got diagnosed as Hashimoto Thyroiditis. However I did not know this until 2 years later. I feel that I am seriously ignorant of my condition but am gaining knowledge fast here!Thank you for your supportive email.

[SlowDragon Administrator in reply to Shylton]

Are you lactose intolerant that you are on Teva?

Teva brand upsets many people.

[Shylton in reply to SlowDragon]

As far as I know, I am not lactose intolerant, saying that, I don't like full-fat milk. The only time I have milk is if I have cooked with it and then it is semi-skimmed. Even as I child I didn't like milk, which has carried on into my 60s.

I have been on Levo from TEVA from the very first. I don't know why it was chosen, I didn't question it.

I am not sure about my weight, very fat. When I was first diagnosed I had got very fat as it took a few years to diagnose. Except when pregnant (and miscarried 5 times) I didn't put on weight, in fact, I had a problem with being underweight. In my late thirties along with other systems, I gained a huge amount of weight. Once I start on Levo the excess weight came off and it stayed off till I gave up smoking. The weight gain didn't and hasn't stopped since even though I don't have a huge appetite. I don't like fried, greasy or rich food. Frequently can't eat more than a few mouthfuls of a meal as I get so hot it makes me feel sick. This has got worse in recent years.

[SlowDragon Administrator in reply to Shylton]

Quitting smoking frequently exacerbates autoimmune thyroid disease….though it’s still better to quit

Thyroid levels need more frequent testing for 2 years after quitting. Frequently dose will need adjustment

Suspect you might be lactose intolerant

Try cutting all dairy

[london81 in reply to Shylton]

hashimotos causes swings: in myself my sister and daughter this has meant periods of being slim followed by fatness. my daughter is very slim: she’s 20 her free t3 is high/over range and antibodies over 600. i had it explained to me that the likelihood is the attacks are taking place and there is an effort by the thyroid to stay alive so it swings too high hormone wise. then eventually it’s destroyed slowly over time.i too was labelled “ underactive thyroid”‘and told nothing of hashimotos or autoimmune. i learnt everything i know from this forum. as far as most medics i’ve met are concerned the treatment for both types is levothyroxine and they have zero ideas as to why hashimotos happens. there is some science now which suggests autoimmune thyroid disease in itself causes persisting symptoms and blood tests don’t show the whole picture ( still no sign of treatment though). whenever a medic says i have underactive thyroid i correct them and say no i have autoimmune disease, with the destruction of my thyroid being a symptom.

in my family my fathers side have autoimmune hashimotos. we are all on the bigger side, very puffy, mental health issues, eczema, hayfever, allergies etc. levothyroxine doesn’t do the trick and we take t3/ndt. my mum has under active thyroid but not autoimmune and she is fine on levothyroxine she doesn’t get weight issues, allergies, eczema or anything. so in my family i have a case study to refer to.

i hope this forum is useful for you. good luck

[SlowDragon Administrator]

Quitting Smoking and Hashimoto’s

academic.oup.com/ntr/articl...

pubmed.ncbi.nlm.nih.gov/226...