im worrying: new test results as they did a... - Thyroid UK

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im worrying

Barb6374 profile image
34 Replies

new test results as they did a retest. These are 5 days after last results.

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Barb6374 profile image
Barb6374
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34 Replies
Jaydee1507 profile image
Jaydee1507Administrator

It's helpful to enable better comments to state your situation. Are you taking any meds or hormones? Do you have a diagnosis as yet? You can edit your post if necessary. 🙂

Barb6374 profile image
Barb6374 in reply to Jaydee1507

hi , I didn't know whether to repeat myself.

drs bloods done 3 weeks ago were

TSH 0.01(0.27-4.20)

T3 4.1(3.1-6.8)

T4 34.3(12-22) was put on carbimazole for overactive thyroid.

I had private test done a week ago

TSH 8.08(0.27-4.2)

T3 SAMPLE ERROR

T4 17.6(12-22)

now today's results from a retest

TSH 18.53(0.27-4.2)

T3 3.2(3.1-6.8)

T4 13.4(12-22)

I have told drs awaiting a reply.

SlowDragon profile image
SlowDragonAdministrator

previous post shows high Trab antibodies for Graves’ disease

healthunlocked.com/thyroidu....

How much Carbimazole are you currently taking

Obviously need dose reduction in Carbimazole, possibly need to stop completely

will flag PurpleNails and pennyannie

Low B12, and deficient folate - now on prescription folic acid

Need vitamin D tested

And Thyroglobulin antibodies tested

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors 

tukadmin@thyroiduk.org

results show you are now hypothyroid

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Barb6374 profile image
Barb6374 in reply to SlowDragon

Hi slowdragon

I'm currently taking 10mg aday of carbimazole.

vitamin d 81(50-250).

THYROGLOBULIN 379.8(0-115).

SlowDragon profile image
SlowDragonAdministrator in reply to Barb6374

Make an appointment with GP for early next week

Meanwhile perhaps reduce Carbimazole to 5mcg per day?

So thyroglobulin antibodies are pretty high ….possibly looking at Hashimoto’s as well as Graves’ disease

This is always managed by thyroid specialist endocrinologist

Vast majority of endocrinologists are diabetes specialists and useless for thyroid

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors 

tukadmin@thyroiduk.org

Barb6374 profile image
Barb6374 in reply to SlowDragon

thank you, I will email.

Barb6374 profile image
Barb6374 in reply to SlowDragon

well dr didn't get in touch , so I don't know what to do for the best regarding my carbimazole. 🙄

SlowDragon profile image
SlowDragonAdministrator in reply to Barb6374

can you cut Carbimazole in half to get 5mcg

Alternatively try to speak to GP surgery tomorrow

They often do Saturday morning surgery

Barb6374 profile image
Barb6374 in reply to SlowDragon

my surgery is not open until Monday and yes I can take 5mg as my tablets come as 5mg and I have to take 2 every morning

SlowDragon profile image
SlowDragonAdministrator in reply to Barb6374

suggest you do that and insist on consultation on Monday

Barb6374 profile image
Barb6374 in reply to SlowDragon

thank you for all your help.

pennyannie profile image
pennyannie

Hello Barb :

On face value you now look to be very hypothyroid ?

I am confused by this TSH reading as with a diagnosis of Graves Disease the TSH is generally stuck down at 0.01 irrespective of where the T3 and T4 sit.

Are you still taking the AT medication ?

Were there any Hashimoto's antibodies showing on the above test - TPO or TgABs ?

I wonder if your other medications have any contra indications with thyroid results ?

I've been following your posts and haven't replied as I don't feel able to offer anything of any consequence and out of my depth.

Barb6374 profile image
Barb6374 in reply to pennyannie

hello.

Thyroid peroxidase antibodies was 21.3(0-34), its now 9.5 since starting on carbimazole.

THYROGLOBULIN 379.8(0-115)

I had this result from my original drs blood test where they diagnosed over active. This was before I started on carbimazole.

Test
pennyannie profile image
pennyannie in reply to Barb6374

Yes, thank you, I understand this to be positive for Graves Disease - and the logical next step is to be prescribe the Carbimazole - which I would think you could now titrate down to 5mcg and monitor closely your T3 and T4 levels.

I'm just confused by the way your TSH has jumped - which isn't normal for Graves and wonder if it is due to the Hashimoto's AI disease which seems to be running alongside the Graves.

Barb6374 profile image
Barb6374 in reply to pennyannie

i asked my gp practise on Tuesday why my TSH had gone up to 8.08 so quickly and he messaged saying its the carbimazole working by blocking the thyroid gland. But now it's jumped to 18.

When the dr first had the results, I did ask if I could have repeat bloods done in a few weeks after my urine infection cleared up but he said he rang an endocrinologist and they both said to start carbimazole straight away.

pennyannie profile image
pennyannie in reply to Barb6374

I wasn't aware that Carbimazole affected the TSH too much.

Thinking on I guess it depends whether you have stimulating or blocking antibodies sitting on your TSH receptor sites.

P.S.

Having just read under that your symptoms started after your 4th vaccine booster I'd be inclined to think that there is a connection here and probably your immune system has been compromised.

Barb6374 profile image
Barb6374 in reply to pennyannie

i don't understand any if it, its all very new to me.

All the dr said was your bloods have come back as possible thyroid problems so he rang endocrinologist and they said it's over active and to start carbimazole, so I presume it was to stop the thyroid from being over active. His exact message to me was

yes they have changed because of the medication which you are taking which, as explained will be blocking your thyroid gland which is what the blood tests are beginning to show to your previous result.

I took it as TSH as that's what I was asking about , but maybe he answered to the T3 and T4 changing.

pennyannie profile image
pennyannie in reply to Barb6374

It does all get very confusing so please don't worry as that makes everything worse :

SlowDragon profile image
SlowDragonAdministrator in reply to Barb6374

Carbimazole is working too well

10mg isn’t a high dose, but it has dramatically reduced thyroid levels (Ft4 and Ft3)

Ft4 is storage hormone and Ft3 is active hormone

High Trab antibodies confirms autoimmune HYPERthyroid disease also called Graves’ disease

However you also have high thyroglobulin antibodies (TG)

THYROGLOBULIN 379.8(0-115)

This could be due to Graves’ disease, but usually with Graves’ disease TPO or TG antibodies are only mildly raised. This result is pretty high

So it’s possible (but rare) that high TG antibodies indicates you have autoimmune HYPOthyroid disease also called Hashimoto’s at same time as Graves’ disease

If you have both Hashimoto’s and Graves’ disease this is managed by endocrinologist. Usually they do “block and replace” …….block with Carbimazole and replace with levothyroxine

TSH 0.01(0.27-4.20)

T3 4.1(3.1-6.8)

T4 34.3(12-22)

These results from GP three weeks ago didn’t look like Graves’ disease…..more like Hashimoto’s…

Early stage Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

Yes TSH was low and Ft4 over range……but Ft3 was LOW.

With Graves’ disease you would expect Ft3 result to be above range by some way

yet Trab antibodies are over range…

Barb6374 profile image
Barb6374 in reply to SlowDragon

thank you, I can go drs om Monday armed with alot of questions

SlowDragon profile image
SlowDragonAdministrator in reply to Barb6374

Make sure you get GP to test vitamin D, folate, B12 and full iron panel test for anaemia including ferritin

Are you currently taking any vitamin supplements

What other medications are you currently taking

Barb6374 profile image
Barb6374 in reply to SlowDragon

latest test

vit d 81 (50-250

folate 45 (8.73-60.8)

b12 89 (37.5-188

Ferritin 70 (30-150

SlowDragon profile image
SlowDragonAdministrator in reply to Barb6374

These look pretty good

When were they tested?

Do you supplement?

If yes, what exactly?

Barb6374 profile image
Barb6374 in reply to SlowDragon



These test results came back today, i did them wednesday. take 10ug of vit d aday for last 2 years.

my folate was low on the Dr's first bloods so gave me folic acid to take. 5mg aday. I have been taking them for 3/4 weeks.

Barb6374 profile image
Barb6374 in reply to pennyannie

very interesting about immune system being compromised.

pennyannie profile image
pennyannie in reply to Barb6374

It's just an assumption on my part - and as detailed previously feel out of my depth :

SlowDragon profile image
SlowDragonAdministrator in reply to Barb6374

have you had Covid?

Barb6374 profile image
Barb6374 in reply to SlowDragon

no, I test regularly, once aweek. I've had 4 jabs. The reason I first went Dr's is because I had violent shakes , cold then hot and I thought it was a side affect from the booster , but dr said probably urine infection and took bloods which then showed over active thyroid.

PurpleNails profile image
PurpleNailsAdministrator

Reduce to 5mg per day?

When is next test due? Carbimazole temporarily blocks how much the thyroid makes.  Block it completely the hormones levels yet use up & they drop to hypothyroid levels.  

Reducing dose allows more hormones ton be produced to allow them to rise again. 

If FT4 & FT3 remains low the may suggest you stop taking it.  

If you find your levels then don’t stabilise & start to rise again you’ll likely need block & replace regimen.  You take a full higher dose of carbimazole to block all thyroid function, then take a replacement hormone to ……restore & control hormone levels. 

How are you feeling hypothyroid symptoms? Better? Worse? Different than when diagnosed? 

Barb6374 profile image
Barb6374 in reply to PurpleNails

hI, I've taken 5mg this morning.

slowdragon sent me a link on symptoms , I have a few of them but nothing new. I don't feel any different from a year ago when I had bypass surgery.

tiredness,weight gain,feeling cold,numbness, breathlessness ,hair loss all since surgery.

I was always saying to the dr about being breathless and tired but it was always put down to heart surgery. When people say tiredness , how tired? . I get up about 8am, 3 mornings aweek I'm at aqua fit and gym, shopping once/twice aweek, electric bike ride every other week, look after grandchildren.I can easily nap for an hour in the afternoon, prepare and cook tea, go to sleep about 11.30pm.

PurpleNails profile image
PurpleNailsAdministrator in reply to Barb6374

You sound pretty active, or are you saying it’s now a struggle?      

Reading your previous 2 thyroid post, you have a lot medicines ect. This might be affecting levels.

I’m starting to think the high FT4 was some temporary thing related to the infection you had at time.

When hypo, unless overtly hypo there must be a 2nd test to confirm it’s not a random fluctuation,  but doctors react differently to hyper. At first sign they prescribed carbimazole and often don’t investigate until much later on.

You do have positive TRab but those level have really dropped down. Your TSH had responded quickly too.  Often if your TSH is low it stays low. I think the longer it’s low the longer it takes to recover which might mean the low TSH was extremely fleeting.

Barb6374 profile image
Barb6374 in reply to PurpleNails

when I first had the violent shakes my Dr sent me to my local hospital who after describing my symptoms said urine infection. He noticed my bloods from my Dr's and said about the high t4 and low tsh and said it could be the infection and to have my bloods re done in 2/3 weeks, but my own dr rang endocrinologist and they decided to put me on carbimazole straight away. I did say I wanted to wait until next bloods as I really didn't think I had a thyroid problem but no he said to start straight away.

I don't know now how to definitely find out if I do have a thyroid problem or not.

I still do the activities, i take it abit easy from having the surgery so my heart rate never goes over 120bpm when exercising and its 55 at rest,before the heart attack I was at the gym every day 😆.

TSH110 profile image
TSH110

You may find Dr Tania Smith’s blog posts helpful in explaining all the antibodies and range of thyroid disorder they are involved in. (Plus a lot of other matters relating to thyroid disorder- she has been prolific in her output!) It can be a challenging read but it’s worth giving it a go to help in understanding your condition. It can take a long time to get a handle on what it all means. Hope it helps:

thyroidpatients.ca/2020/04/...

Barb6374 profile image
Barb6374 in reply to TSH110

thank you, I will have a read.

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