medication

[Samanthaplumber]

Hi I was diagnosed with over active thyroid in Oct 2024 after first being told I had high cholesterol. I was over medicated on 10mg per day of Carbimazole so dropped straight away to 5 which after four weeks didn’t suit so now effectively take 7.5mg per day. Bloods taken last week show T4 in range but tsh although reduced from last blood test is still high and symptoms creeping back in. GP not a lot of help but thinking of slightly reducing my medication further?

[greygoose]

Hi Samanthaplumber, welcome to the forum.

Do you have the actual numbers for the TSH and FT4: results AND ranges? Because if your TSH is high, you have an under-active thyroid, not over-active. And if your cholesterol was high, that would also suggest an under-active thyroid.

Did they test any antibodies? That is the first thing they should have done before putting you on carbi.

[Samanthaplumber in reply to greygoose]

Hi when first diagnosed in October 2024 my T4 was 38.2 and TSH 0.04. They over medicated me pushing me to underactive and the results last week were T4 14.4 TSH 7.2

[Samanthaplumber in reply to greygoose]

I don’t think they tested antibodies?

[greygoose in reply to Samanthaplumber]

Without antibodies it's not really a diagnosis, just an assumption. You really should insist on having them tested asap. There are four types of antibodies that need testing to cover all bases:

- TRAB and TSI for Graves

- TPOab and TgAB for Autoimmune Thyroid Disease - aka Hashis.

So, you've given us the results, but we also need the ranges to be able to interpret thr tests, because ranges vary from lab to lab.

[Samanthaplumber in reply to greygoose]

greygoose these are my test results dating back to October 2024

Written

[greygoose in reply to Samanthaplumber]

OK, so they tested the antibodies and then ignored the results! And put you on AT drugs anyway.

Totally agree with pennyannie you don't have Graves' and should not be taking carbimazole.

[Samanthaplumber in reply to greygoose]

greygoose pennyannie ok that’s good to hear but what do I do now? I wouldn’t think I should just stop taking the medication?

[pennyannie in reply to Samanthaplumber]

So did you ever get to see an endocrinologist and who instigated prescribing you the AT drug ?

First step is to speak with your doctor and discuss your concerns -

How are you feeling?

[Samanthaplumber in reply to pennyannie]

pennyannie I was referred to an endocrinologist but haven’t yet had an appointment. I had levelled out after starting on 10mg a day of Carbimazole within four weeks they said I was over medicated and dropped it to 5mg a day. A few weeks after that symptoms started to creep back in : dry eyes, anxiety, palpitations. So on the 23rd December I contacted the doctor again and it was agreed I split the dose. 5mg every day with 10mg on alternate days. I was booked in for a repeat blood test last week so 12 weeks from November. I had started to get dry eyes again, mild but controllable anxiety and minor palpitations. My results came back stating no further action but I contacted them because the TSH was out of range. The doctor won’t do anything without confirmation from the endocrinologist and has sent through another referral. I know I am not right but don’t know what to do about it. Would this likely mean I don’t need medication at all and if so why was I not right back in October? They only ever carried out that batch of tests because I was referred to the lipid consultant as I argued against my cholesterol being hereditary. After a telephone consult that consultant requested the thyroid testing be carried out

[pennyannie in reply to Samanthaplumber]

So you could stop the AT drug yourself but totally understand you would like our doctor ' on side ' rather than than feeling some level of alienation- especially if you mention that you went on the internet.

You could ask for conclusive evidence for Graves Disease and ask that the most appropriate antibody blood tests be run - a Thyroid Stimulating ab or Thyroid Receptor ab run ?

You could also detail all the new symptoms you are now tolerating since starting this treatment ?

If you go intoThyroid UK - the charity who support this patient to patient forum - thyroiduk.org - there is a very detailed sheet of symptoms of hyperthyroidism and hypothyroidism - maybe print it out, and tick box your symptoms - and use it to help you explain to your doctor where you now find yourself -

hyper / hypo - is not a straight line and some symptoms can be experienced at both extremes -

but your bloods say it all in November as by then - none of your thyroid readings are in the ranges and I believe this because you are on the wrong medication as the AT drug is blocking your own new daily thyroid hormone production and exacerbating the original issue -

which I see as a Hashimoto's ' hyper type swing ' with the patient already undiagnosed hypothyroid.

So roll back to the beginning - you had no symptoms of hyperthyroidism and these blood tests were arranged as you have high cholesterol and this is commonly associated with being hypothyroidism -

and the NHS guidelines now suggest that before starting treatment for high cholesterol - if with hypothyroidism - this should first be optimally medicated ?

If using any eye drops, lotions, greases or sprays to ease the discomfort for your eyes please ensure all are Preservative Free - even those prescribed by the NHS.

Does this make any sense ??

[Samanthaplumber in reply to pennyannie]

pennyannie yes it does thank you. I always thought if a range was depicted as : <34 it meant so long as my tested figure was less than 34 for example that meant I was within range? Is that not correct?

[pennyannie in reply to Samanthaplumber]

Ranges vary from laboratory to laboratory - on Medichecks TPO under 34 is ok -

looking on the internet I'm told the cut off for TPO is under 5/6UL/mL -

So in theory you are right -

but as already explained there is another ab for Hashimoto's TgAB and the NHS do not generally run both and why it's been suggested to get your abs run as private blood companies run both TPO and TgAB -

and then for Graves you need a separate blood test as already detailed by slowdragon

medichecks.com/products/adv...

and it's all just more facts to try and push the NHS to test the right biomarkers:

[SlowDragon Ambassador]

Autoimmune HYPOTHYROID disease also called Hashimoto’s frequently starts with temporary initial hyperthyroid type results and symptoms before becoming increasingly hypothyroid

The temporary high Ft4 can be caused by breaking down of thyroid cells. It’s not true hyperthyroidism

That’s why it’s important for GP to actually test all the antibodies

Before starting you on Carbimazole they should have tested TSI or Trab antibodies for Graves’ disease (autoimmune hyperthyroid)

And tested TPO and TG antibodies for Hashimoto’s (can sometimes also be mildly raised with Graves Disease)

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

High cholesterol suggests hypothyroid

Low cholesterol hyperthyroid

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease Graves or Hashimoto’s

Ferritin usually low with hashimoto’s but frequently high with Graves’ disease

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 everything

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

[Samanthaplumber in reply to SlowDragon]

Thank you that’s really helpful. I was told by the doctors I didn’t need to fast prior to testing although did have it done early morning I had eaten and already exercised

[Samanthaplumber in reply to SlowDragon]

May I ask which test you would recommend and once you have the results do you then send them to your GP?

[SlowDragon Ambassador in reply to Samanthaplumber]

Ideally get Medichecks one and also test for TSI as well

But this has to be private blood draw at clinic local to you

Graves Disease antibodies test

medichecks.com/products/tsh...

[pennyannie]

Hello Samanthaplumber and welcome to the forum :

To be prescribed an Anti Thyroid drug - such as Carbimazole - there first needs to be a diagnosis and this is achieved by running an antibody blood test which should have happened from the original bloods taken last October.

These will look like either / or TPO - TgAB - TSI - TRab - or words reading as a TSH Thyroid Receptor ab -with ranges - and which ever ones of these abs were found positive and over the range leads to your being diagnosed and the proof needed before a medication is prescribed.

When the thyroid malfunctions there can be some overlap in the antibodies found in the blood and Graves treatment takes precedence as this Auto Immune Disease is considered life threatening if not medicated, and the treatment is with an AT drug.

Graves generally presents as a low suppressed TSH - and either high over range T3 and T4 readings or low but inverted T3/T4 readings.

So if you care to share your blood test results from last October - TSH + T3 + T4 results and ranges + the antibody readings and ranges / cut off numbers -

we can then try and help you better understand where you are in this phase of ill health.

[pennyannie]

If replying to someone you need to ensure you reply within their reply as then they get notified they have a message to come back to:

So - I don't know who you are replying to here -

I think high Cholesterol is generally associated to hypothyroidism :

You can go back into your previous statement re Cholestrol - and just press bottom right -

More - then Edit - and then just type an @ directly before the other persons user name-

and as you type a bar should drop down from which you select the name you are looking for - the more you type in - the fewer the options to select from and once chosen the name should end up in print in blue.

Though maybe easier to go More - Delete - and start again - ??

[pennyannie in reply to pennyannie]

Do you have access to your medical records on line ?

as you'll likely find the antibody results either alongside the results last October - or around a week or two later ?

 Samanthaplumber

Gp's are not obliged to accept private blood test and these tests have probably already been run and on your medical records.

[Samanthaplumber in reply to pennyannie]

pennyannie these are my test results from my online portal

Written

[pennyannie in reply to Samanthaplumber]

Ok - thanks - so antibodies - with the numbers in the brackets being the ranges -

please check I have this correct as I can't see this paper too well -

if your results are TPO 10 - with 34 being the cut off - so a negative -

and the TSH binding site inhibitor is 0.80 with 1.74 being the cut off - so a negative

so on first glance both these antibodies are negative - the TPO is for Hashimoto's and the TSH binding inhibitor ( TBII ) can be found in patients with Graves or Hashimoto's - though I've never seen this bio marker before for either of these AI diseases -

as usually for Graves we see a TSI or TRab - or TSH Thyroid receptor ab:

There is a further antibody for Hashimoto's that hasn't been run - TgAB -

so I do not believe this is the conclusive evidence that you need to have been prescribed an Anti Thyroid drug for Graves Disease plus the fact that your TSH has bounced back too quickly for most cases of Graves I've seen.

I would think this looks more like Hashimoto's and for some as the NHS does not routinely un a TgAB - diagnosis is through a scan or ultra sound:

October results - TSH 0.04 ( 0.27/4.50 ) T3 10.70 ( 3.10/6.80 ) T4 38.20 ( 11/23 )

November ........... TSH 9.00 ( o/range ) T3 3.70 ( u/range ) T4 9.70 ( u/range )

Feb 2025 ..............TSH 7.00 ( o/range ) T3 Not measured T4 14.40 28% :

November onwards shows your TSH is way over range and signals that you need more thyroid hormones - though you are taking an AT drug which is blocking your thyroid hormones - which is having the opposite effect.

Your TSH needs to be back in the range which may well happen if you come off the AT drug - as on these results you do not have Graves Disease.

[Samanthaplumber in reply to Samanthaplumber]

pennyannie that’s very helpful thank you and yes the figures you mentioned are are per what’s on the paper. So I would be right in thinking then I need to be scaling back the carbimazole over a gradual period of time?

[pennyannie in reply to Samanthaplumber]

I think it should be stopped immediately as it is prescribed for Graves Disease and have no definitive proof here of Graves Disease.

Hashimoto's is not treated with an AT drug - and initially there is no treatment - as these AI attacks are transient and your T3 and T4 fall down back into range themselves-

This AI disease causes erratic own thyroid production which causes ' swings ' in symptoms and inevitably - the swing swings back - from hypo - to hyper and back down again to hypo -with your thyroid further disabled and ultimately you will need thyroid hormone replacement as your own thyroid gland becomes further compromised and non productive.

You might like to read around and see if Hashimoto's makes some sense to you - as many forum members find the research and suggestions of Dr Izabella Wentz very useful - thyroidpharmacist.com

However you also need to speak with our doctor as I do not think you should even be on the Carbimazole unless there is something else that is going as I can't see a diagnosis of Graves being made by the information shared.

pubmed.ncbi.nlm.nih.gov/454....

[pennyannie]

A ' euthyroid ' thyroid - one that is working well and with nothing going on - would present with a TSH at around 1.20/50 - with a T4 around 50% and a T3 tucked in just behind at around 45% through its range.