Thought hashimotos, Now graves

[Flashgirl]

Well after a year of thinking I had hashimotos (lots of hypo symptoms, including low t4, positive tpo antibodies), treated this with levo. I then had a 'flip', came off levo, symptoms remained, so had the TSH receptor antibody test and tested positive for Graves Disease (with a range of symptoms, palpitations, high resting heart rate, sweats, weight loss, insomnia. Had suppressed tsh, above range t3 and high t4). I am now on carbimazole.

Luckily the hyper symptoms have gone since starting it a month ago. A blood test this week, shows TSH is still suppressed. The FT4 has gone from the bottom of the range in Jan 2020 (hence last year thinking it was hashimotos), to the top of the range in Oct/Nov 2020 (graves starting to show itself - feeling buzzing! So came off levo for a few months, but in Jan 2021 diagnosed with Graves so started on carbimazole). Blood test Feb 2021 shows t4 gone back towards the bottom of the range. Am waiting for my most recent t3 result.

Now I feel like I have hypo symptoms again!! I am so tired! Is it the carbimazole that makes the t4 go back down? Do I need to raise the t4 to feel more energised? ( last year was on levo 100mg and although not feeling brilliant, wasn't feeling brain fog, extreme lethargy etc that I had felt before. felt buzzing when I was near the top of the range; although too buzzy!).

I am so confused with my diagnosis. I can't seem to find much info on the net.

My doctor is unable to interpret results and I don't have an endo at my call for these constantly changing symptoms. Does anyone have any idea or insight into my blood test results?

Please see below for lots of results, they are just to show the complicated history!

Thanks so much.

BLOOD TEST RESULTS

TPO ANTIBODIES (range 0-5.60ku/L)

JAN 2020 - 150.8 POSITIVE

JULY 2020 - 39.6 POSITIVE

OCT 2020 - 231.3 POSITIVE

DEC 2020 – 768 POSITIVE

TSH RECEPTOR AB (range 0.00-040 U/L)

DEC 2020 – 3.41

SERUM TSH (range 0.35-5.00mu/L)

JAN 2020 - 1.75

MAR 2020 - 1.51

APRIL 2020 - 0.66

JULY 2020 - 0.41

SEPT 2020 - 0.07

OCT 2020 - <0.01

DEC 2020 - <0.01

FEB 2021 - <0.01

SERUM FREE T4 (range 9.00-22.0pmol/L)

JAN 2020 - 9.7

MAR 2020 - 11.1

APRIL 2020 - 13.3

JULY 2020 - 11.7

SEPT 2020 - 13.6

OCT 2020 – 21

NOV 2020 – 20.6

DEC 2020 – 18.6

FEB 2021 – 11.1

SERUM FREE T3 (range 2.40-6.00pmo/L)

MAY 2020 - 3.80

JULY 2020 - 4.6

NOV 2020 – 11.6

DEC 2020 – 10.3

FEB 2021- AWAITING

FERRITIN (range 10.00-200.00)

AUG 2019 - 8 .

JAN 2020 - 50

MAR 2020 - 32

MAY 2020 - 23

JULY 2020 - 31

SEPT 2020 - 36

OCT 2020 – 42

NOV 2020 - 56

DEC 2020 – 50

FEB 2021 – 37

VITAMIN B12 (range 200.00 - 910.00ng/L)

NOV 2019 - 840

JAN 202 - 705

MAY 2020 - 705

JULY 2020 - 869

SEPT 2020 - 1036 (OVER RANGE)

OCT 2020 – 880

NOV 2020 - 797

DEC 2020 - 849

FEB 2021 - 631

SERUM FOLATE (range 3.00 - 20.00ug/L)

NOV 2019 - 8.4

JULY 2020 - 8.2

SEPT 2020 - 17.7

OCT 2020 - 19.7

NOV 2020 – 16.7

DEC 2020 - 15

FEB 2021 – 10.7

VITAMIN D (range 50.00 - 200.00nmol/L)

JULY 2020 - 119

OCT 2020 – 118

FEB 2021 - 116

[Jazzw]

It’s possible you have both Graves and Hashimoto’s, I’m afraid. But Hashimoto’s can progress like this, with your thyroid having spells of being overactive as well as under active. It’ll eventually burn itself out and you’ll be under active all the time but it can take a while and I can only imagine what a trial it must be for those who have it this way.

Many GPs seem to believe that an overactive thyroid is always due to Graves so wouldn’t surprised if things have been confusingly worded during consultations.

And yes, carbimazole essentially dampens down your thyroid activity (making your T4 and T3 go down) and if you’re on a little too much, you can end up under active. Getting the balance right can be a bit of a challenge.

How much carbimazole are you on at the moment?

[tattybogle]

Some reading material for when your brain works, all from here

thyroidpatients.ca/home/sit...

Specifically , these may be interesting

thyroidpatients.ca/2020/04/...

thyroidpatients.ca/2020/04/...

[SlowDragon Administrator]

If it’s genuinely Graves’ disease and Hashimoto’s treatment is via endocrinologist...block (Carbimazole) and replace with levothyroxine

If it’s hashimoto’s temporary hyperthyroid flare, you likely won’t need Carbimazole and will be more hypothyroid after flare (as that’s another bit of your thyroid gone west)

[Flashgirl]

Many thanks all.

I assume that the TSH Receptor AB test in dec with result of 3.41 (range 0.00-040 U/L)means I have Graves? Is there any chance it may not be with this positive result? I also have Tpo antibodies.

Jazzw I was on 10 for a month and now on 5. But my t4 dropped and feel tired.

Tattybogle Thanks for the links. And thanks slowdragon for the block and replace idea. Will look this up.

[PurpleNails Administrator in reply to Flashgirl]

TRAb (& or TSI) are considered unique to Graves. TPOAb are present in both autoimmune conditions.

Carbimazole works by stopping iodine being converted to a usable form for the thyroid to make new T4 & T3.

It can be a 3 - 8 weeks process for the body to use pre existing hormone already produced & stores.

Having Hashis too might mean you have a tendency to drop too quickly or generally fluctuate, so block and replace might be a good option.

[Jazzw in reply to Flashgirl]

Yes, there’s a chance it isn’t Graves. TSH Receptor ABs show up in 10-15% of Hashimoto’s cases.

There’s reference to this in one of the links tattybogle posted but I’ve also found it elsewhere: amboss.com/us/knowledge/Thy...

If it isn’t Graves, you’ve probably been having Hashi flares. The carbimazole settles those down but once the flare is over you probably don’t need it. I’m absolutely not an expert on carbimazole but it might be that you can reduce your dosage again or even come off it (for now). Think I’d check back with my doctor first though. They may be adamant it’s Graves but that won’t necessarily be because they know it for sure. As I’m sure you’re starting to realise, many doctors aren’t especially clued up on thyroid disorders...

[ling]

The high TPO and high TRAb would seem to indicate u have both Hashimoto's and Graves. It's best if u can try and find an endo who knows how to treat thyroid conditions.

Best wishes.

[Buddy195 Administrator]

My Endo was convinced I had Graves as I had hyper symptoms for a long time, plus TED. However, blood tests now show Hashimotos. If my thyroid medication/ key vitamins are not optimal, then symptoms return (eg increased anxiety, restlessness, palpitations, pins & needles). I’ve followed advice from members, especially SeasideSusie re vitamins humanbean re ferritin and this has really helped.