High antibodies is this serious

[Lotusblossom123]

I have hypothyroidism. In July test was TSH 4.92 tpex 48.3 tgab 338 new test September shows tpex 53.4 tgab 323 (antibodies) feeling unwell and struggling. Is this serious.

[SeasideSusie Remembering]

Lotusblossom123

Rather than "serious" this shows that the cause of your hypothyroidism is autoimmune, over range antibodies confirm autoimmune thyroid disease.

Are you diagnosed hypothyroid and prescribed Levothyroxine?

[Lotusblossom123 in reply to SeasideSusie]

Yes I'm on levothyroxine and asked to see a endocrinologist. I'm a little worried in case of cancer.

[SeasideSusie Remembering in reply to Lotusblossom123]

Lotusblossom123

With TSH over range, which it is bound to be at 4.92 (always please include reference ranges when posting results, ranges vary from lab to lab), you were very undermedicated in July.

I would be getting new tests and ask for TSH, FT4 and FT3 to be tested as things could have changed. If GP can't or wont do all of then we have recommended private labs who can.

As you have Hashi's (autoimmune thyroid disease) then this can cause low nutrient levels or deficiencies. It's important to test

Vit D

B12

Folate

Ferritin

and optimise any low levels.

Again, if GP wont do all these tests then they can be done with a private test. A full thyroid/vitamin panel includes everything and can be done by fingerprick or, for extra cost, venous blood draw can be arranged.

[Lotusblossom123]

Hi, I had full enhanced tests each time (done privately) because my GP wouldn't do it. FTs and TSH all normal. Lab rang told me to urgently contact my GP and to be referred to an endocrinologist. I have just had a call to say I am being referred.

[SeasideSusie Remembering in reply to Lotusblossom123]

Lotusblossom123

FTs and TSH all normal

All that means is that your results are somewhere within the range, it doesn't mean that they are optimal. What are the actual results with their reference ranges.

What was the reason the lab said you needed to contact your GP urgently?

If your results are within range there is a chance that the endo will refuse the referral.

What are all the results of your latest test?

[SlowDragon Administrator]

How much Levothyroxine are you currently taking

How long on current dose

Do you always get same brand Levothyroxine at each prescription

With TSH over 2 you need 25mcgs dose increase in Levothyroxine

See/contact GP for immediate dose increase in Levothyroxine

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

ESSENTIAL to regularly retest vitamin D, folate, ferritin and B12

When were these last tested

What vitamin supplements are you currently taking

If not been tested in last 6-12 months request testing

Also as cause of your hypothyroidism is autoimmune thyroid disease (hashimoto’s) you need coeliac blood test done if not already on strictly gluten free diet

[SlowDragon Administrator]

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...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

[Lotusblossom123 in reply to SlowDragon]

My recent results wereT4 110 mnol/L

TSH 2.72 Miu/L

FT4 14.7 PMOL

T3 4.8 PMOL

I am taking 50mg levothyroxine

[Lotusblossom123 in reply to Lotusblossom123]

I forgot to say I also have severe bile acid malabsorption and Crohn's

[SlowDragon Administrator in reply to Lotusblossom123]

How long have you been on just 50mcg (standard STARTER dose)?

Which brand Levothyroxine are you currently taking

Do you always get same brand at each prescription

Was test done as early as possible in morning before eating or drinking anything apart from water and last dose Levothyroxine 24 hours before test

Please add ranges (figures in brackets) after Ft4 & FT3

Presumably with Crohn’s you get vitamin levels tested regularly

What vitamin supplements are you currently taking

[Lotusblossom123 in reply to SlowDragon]

This must sound awful but my GP doesn't check any bloods regularly. I've been on this dose since 2019 that's why I decided to get a private test. I couldn't even get a call from my GP until the 6th of November.I know my iron levels are quite high for some odd reason although it fluctuates. All my family have had thyroid problems even my grandparents on my mum's side had it.

[SlowDragon Administrator in reply to Lotusblossom123]

Was this test done via Blue Horizon?

Ft4 14.7 (12-22)

Was test done as early as possible in morning before eating or drinking anything apart from water and last dose Levothyroxine 24 hours before test

Assuming yes

Ft4 is too low

Shows you need 25mcg dose increase in Levothyroxine

Did you get vitamin levels tested

[Lotusblossom123 in reply to SlowDragon]

I used let's get checked who were very good. The test was done early morning. I could get another private test for vitamins ? As I have acid malabsorption nothing stays in my tummy for even 10 minutes.

[SlowDragon Administrator in reply to Lotusblossom123]

With Crohn’s and bile malabsorption your GP should be testing vitamin levels regularly

Insist they test

[SlowDragon Administrator in reply to Lotusblossom123]

Suggest you consider seeing private thyroid specialist endocrinologist

Roughly where in Uk are you

Email Thyroid UK for list of recommended thyroid specialist endocrinologists - NHS and private

[e-mail]

[Lotusblossom123 in reply to SlowDragon]

Thank you . I already feel a huge weight lifted off me.

[SlowDragon Administrator in reply to Lotusblossom123]

Come back with new post once you get vitamin results

Likely to need to work on improving low vitamin levels

Members can advise on how to improve low vitamin levels

Meanwhile getting 25mcg dose increase in Levothyroxine…. Though likely better to initially increase 50mcg and 75mcg on alternate days

Teva brand upsets many people

And Teva is the only brand that makes 75mcg tablets

So best to request

Either 25mcg tablets to add to 50mcg - if taking Advanz (Mercury Pharma) brand

Or if taking Accord (Almus via Boots or Northstar via Lloyds) request higher number of 50mcg tablets and cut in half to get 25mcg

BEWARE 25mcg Lloyds is Teva

Request coeliac blood test test too BEFORE considering trial on strictly gluten free diet

5% of hashimoto’s patients are coeliac, but further 80% find strictly gluten free diet either helps, often significantly, or is absolutely essential

Meanwhile suggest you read posts on here most days - learn just how common thyroid disease is and how poorly current treatment is

You can read members profiles too

[SlowDragon Administrator]

tpex 48.3 tgab 338

new test September shows

tpex 53.4

tgab 323 (antibodies)

High antibodies confirms cause of hypothyroidism is autoimmune thyroid disease also called hashimoto’s

About 90% of primary hypothyroidism is autoimmune thyroid disease

The aim of Levothyroxine is to increase the dose slowly upwards in 25mcg steps until on or near full replacement dose

Typically takes 8-9 months to a year to increase dose Levothyroxine slowly up

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

50mcg is only a STARTER dose

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

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

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

How much do you weigh in kilo

[Lotusblossom123 in reply to SlowDragon]

Unfortunately I am 92kg . I have had a huge weight gain which is so depressing. I have joint pain , hair falling out and tingling in hands and feet.

[SlowDragon Administrator in reply to Lotusblossom123]

Levothyroxine doesn’t “top up” failing thyroid…. It replaces it

You have been left grossly under medicated

Likely EXTREMELY low vitamin levels

Did you get vitamin levels tested?

If not see GP for 25mcg dose increase in Levothyroxine

Request/insist on vitamin D, B12, folate, ferritin testing

Plus coeliac blood test

High percentage of autoimmune thyroid patients need to be strictly gluten free

Ruling out coeliac by testing is a first step

Crohn’s frequently results in low vitamin D

Bile malabsorption in low B12

[SlowDragon Administrator in reply to Lotusblossom123]

Joint pain - often low vitamin D/ gluten intolerance

Hair loss - low iron or ferritin

Pins and needles- low B12

[Lotusblossom123 in reply to SlowDragon]

I will pay to get these tests done asap. Feel very let down by my GP surgery. Thank you so much.

[SlowDragon Administrator in reply to Lotusblossom123]

92 kilo x 1.6 = 147mcg as the eventual likely daily dose Levothyroxine required

We can only increase dose Levothyroxine SLOWLY upwards

Having been left extremely under medicated for 3 years you may need to increase VERY slowly

50mcg and 75mcg on alternate days for 6-8 weeks before increasing to 75mcg daily

Getting vitamin levels tested and supplement to OPTIMAL levels helps tolerate increase in Levothyroxine easier

Many many people find different brands Levothyroxine are not interchangeable

Which brand Levothyroxine are you currently taking

[Lotusblossom123 in reply to SlowDragon]

I've looked on the box and all I can see is levothyroxine sodium. No other info.

[SlowDragon Administrator in reply to Lotusblossom123]

Assuming you are in the Uk

List of different brands

Accord- boxed as Almus via Boots or Northstar via Lloyds

50mcg and 100mcg only

Activis - Mercury Pharma

25mcg, 50mcg and 100mcg

Wockhart- 25mcg only

Lactose free

Teva

Aristo- 100mcg only

Teva brand upsets many people

[helvella Administrator in reply to Lotusblossom123]

If you can't work it out, how about taking a photo of the box and attaching to a response?

Or looking carefully and letting us know the exact markings on tablet?

Or both?