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[Amethyst123]

Hi I was taken off Carb 15mg on my last visit to GP on Dec 8th as I complained that my voice had changed and I was struggling to get out of bed. He looked at my results taken 23.10.23 which were TSH 7.85 (0.27-4.20) and FT4 10.5 (11.0-25.0) I assume the GP had done this incase of over medicated for Graves. My results came back yesterday and they read: TSH 4.42 (0 27-4.20) and FT4 13.1 (11.0-25.0) I am due to see the endo on 9th Jan 24 is there anything I should be asking him I wondered if I should be takenoff meds without knowing what my antibody levels were doing The GP has not spoken with endo just stopped medication Any advise would be great Thankyou

[SlowDragon Administrator]

welcome to the forum

Autoimmune HYPOthyroid disease (also called Hashimoto’s) frequently starts with transient hyperthyroid results and symptoms

What were your results before starting on Carbimazole

How long were you on it

In an ideal world GP should have tested for Graves’ disease antibodies BEFORE starting you on Carbimazole

We get steady stream of Hashimoto’s patients initially misdiagnosed as hyperthyroid

TSH 4.42 (0 27-4.20) and FT4 13.1 (11.0-25.0)

I am due to see the endo on 9th Jan 24 is there anything I should be asking him

Yes you need

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

Also both TPO and TG thyroid antibodies tested at least once for Hashimoto’s

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

And test TSI or Trab antibodies for Graves’ disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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)

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

And also with Graves’ disease

Insist that vitamin levels are tested

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes 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

is this consultation just local NHS endocrinologist or private one with a recommended thyroid specialist endocrinologist

[PurpleNails Administrator]

Ideally the right antibody are tested straight away. Then it can be decided if commencing carbimazole the right course of action.

Looks like dr decided to stop it as your TSH has risen quite high & FT4 below range.

How long were you on 15mg, did you start on 15mg?

It’s takes around 6 weeks for the effects of carbimazole to complete because it works by reducing what new hormone can be produced.

Funtion should we retested 6 weeks after adjusting or stopping.

To confirm Graves (continuous hyper) you need a positive TRab or TSI:

Thyroid-Stimulating Immunoglobulin (TSI)

TRab) TSH (or trytropin) receptor antibodies - (measures stimulating, neural & blocking antibodies)

Positive TPO or TGab appear with both Graves & Autoimmune thyroiditis (Hashimoto’s)

Hashimoto’s can cause transient hyper, ultimately under active.

[Amethyst123 in reply to PurpleNails]

Hi Thankyou for getting back to me An endo diagnosed me in march 23 after I ended up at A and E with rapid heart rate etc He was on duty at the time and put me on 20mg of Carb and propanadol. I only saw him the once then any future tests were done through gp. I was reduced to 15mg back in Oct 23 as results were TSH 7.85 (0.27-4.20 AND FT4 10.5(11.0-25.0) I questioned this with endo as i felt worse but he said stay on 15mg I then went back to GP who took me off all together on 8th Dec results in previous comment Thanks

[PurpleNails Administrator in reply to Amethyst123]

Reduction by 5mg totally insufficient.

By May you should have had retest & likely could have been reduced then to 10mg (Often by 50%) that would have prevented you reaching hypothyroid levels October.

From now on have your levels rechecked 6 weekly. You are monitoring FT4 & FT3 for increases & well as decreases. Do not rely on TSH level. TSH remains low after a period of hyper.

Do you still take propranolol? Do not stop this abruptly, must be reduced slowly.

[Amethyst123 in reply to PurpleNails]

Hi i stopped propanadol back in May and my resting HR is now a steady 75bpm 64 at bedtime Has been for some time. Could it be that I have hashimotos and was hyper initially or has it always been Graves. Any advise as I didnt know Hash could present with hyper first.

[PurpleNails Administrator in reply to Amethyst123]

Impossible to predict. 20mg isn’t a high starting dose, (60mg is max daily) this could even suggest your originals levels were not typically Graves high.

Graves tend to have level in excess of 3x normal range, hashi elevations tend be lesser. That doesn’t mean there are exceptions with very high hashi and less severe Graves. What’s important is to establish is it’s likely to be continuous or temporary.

Antibodies can help determine that, either way doctors should be carefully monitoring levels & appropriately adjusting dose.

I have hyper from a nodule (no autoimmune) & my FT3 was about 2x normal whereas FT4 was borderline. 8 weeks on starting dose of 20mg and levels were borderline low dose was halved.

[Amethyst123 in reply to PurpleNails]

Thankyou for your reply I appreciate it

[pennyannie]

Hello Amethyst and welcome to the forum :

It is essential that you know whether you have Graves Disease or Hashimoto's -

as they can both start off the same way BUT only Graves is medicated with an Anti Thyroid drug such as Carbimazole as Graves is considered life threatening if not medicated.

Antibodies can wax and wane throughout one's life -

and we are looking at 2 auto immune diseases -

for Graves we need positive and over range TRab - thyroid receptor antibodies -

and with Hashimoto's we need to see positive and over range TPO - thyroid peroxidase -

Graves is multi organ whereas Hashimoto's attacks just the thyroid and sometimes the eyes and once your thyroid is rendered disabled as I understand things this AI disease dies with your thyroid fully disabled.

The antibodies are usually run at the initial blood test - the NHS do not routinely run them again - do you have your blood test results at diagnosis and can share them with forum members ?

If you do have Graves Disease we do now have some research that you my like to copy and keep for future reference :

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

All things Graves Disease - elaine-moore.com

Many forum members find the research and suggestions of Dr Izabella Wentz who herself suffers with Hashimoto's well worth following - thyroidpharmacist-com

[Amethyst123]

Hi I will ask the hospital whenI am there next on the 9th Jan to see my Endo about diagnosed results as GP said they are with the hospital. I hope he doesnt stop the Carb on seeing my results like my GP has Can I ask to remain on meds until they do an antibody test? and anything else I should ask him? Thankyou for your reply

[pennyannie in reply to Amethyst123]

Hello there - I've only just seen this reply to I presume ' me ' as you didn't actually reply to me within my post above :

So - in January just gone when you saw the endo did he confirm if you had Graves Disease ?