Graves Disease

[Michaeladell]

Hi everyone. Little old me asking for advice again. My TSH receptor AB tests have come back positive for Graves. 1.9 (range 0 to 1). I’ve copied my most recent other results below. And I’ve had another thyroid function test today for which the results should be back tomorrow. My ultrasound scan showed no nodules but my thyroid measured 21cm instead of the normal 19cm. My question is, do I have Graves on it’s own? I have no indication of Graves ophthalmic disease

B12 196 (197-771)

Folate 4.7 (>2.9)

Ferritin 78 (13-150)

C Reactive Protein 5.9 (<5.0)

Total thyroxine 75 (59-154)

TSH 12.5 (0.27-4.2)

Free T4 8.2 (12.0 to 22.0)

Free T3 3.0 (3.1 to 6.8)

Vitamin D 43 (50-200)

TGA 1134 (0-115)

TPO 267 (0-34)

TSH receptor AB 1.9 (0-1)

[SlowDragon Administrator]

I am not sure you can tell if you also have Hashimoto's because you can have high TPO and TG antibodies with Graves

Your test results show you are now hypothyroid. TSH is much too high, FT4 and FT3 both far too low.

B12 is very low. Have you been tested for Pernicious Anaemia. If not ask GP to do so, you almost certainly need B12 injections

Post your results on PAS healthunlocked for specific PA test advice

Vitamin D is too low, but because it's above 25 GP will only prescribe 800iu, which is very unlikely enough. Just buy your own. Better You vitamin D mouth spray works well as avoids gut. Maybe try 3000iu daily and retest in 2-3 months. Aiming for around 100nmol UK units

Vitamindtest.org.uk - £28 postal kit. Test twice yearly.

If not already strictly gluten free diet then definitely consider trying it

[Michaeladell in reply to SlowDragon]

SlowDragon, my blood tests have come back. My T4 has remained unchanged at 8.2 (10 - 18.7) but my TSH has gone up to 35.19 (0.3 - 5.0). An month ago it was 12.5. Can you help me understand why that would be?

[Michaeladell]

Thanks SlowDragon. You always have good advice and take the time to answer. I am at the doctors tomorrow so will ask for a test for pernicious anaemia. I am currently taking 3000iu B12 since getting these results and 3000iu Vitamin D in a spray daily. And I am currently strictly gluten free but only for the past week. Is it normal to go so underactive with Grave’s? I’m currently taking 5mg carbimazole daily on the advice of my endo x

[Rmichelle in reply to Michaeladell]

Hi there M, i could only see your reply on the email page and not on here- dont know why. Right so you are coming off carbi then? They may even try that with me for 6 weeks and see or even reduce down to 2.5mgs or lower- i dont know!! I couldnt believe how quick you have gone hypo. Hope you get some more replys. Good luck and keep in touch.😊

[Michaeladell in reply to Rmichelle]

He just said in 6 weeks. Gonna try and get another appointment with him I think. He thinks I may be very sensitive to carbi but where does that leave me?

[Michaeladell in reply to Rmichelle]

My TSH has now gone up to 35.19 x

[Rmichelle in reply to Michaeladell]

Oh my god- how do you feel? I feel rubbish with tsh 5.27!

[Michaeladell in reply to Rmichelle]

I feel awful!!! Managed to get an appointment with endo but not till 5/1. Results have been faxed to him though and I’m going to speak to his secretary on Monday x

[Rmichelle in reply to Michaeladell]

Oh poor you, yes i think you will be put on levo now, are you off carbi now or a lower dose. Dont know what my endo is going to suggest, mine is tuesday. I think you cant wait till january to take meds. What are youre symptons-tired, exhausted, palps, breathless?

[Michaeladell in reply to Rmichelle]

Yep all of those plus stiffness and lots of aches and pains. Hoping on Monday he’ll tell my doctor to prescribe levo. I’ve also got an urgent referral for gynae surgery and I’ve been for my pre op this afternoon. So they want to know what’s going on too x

[Rmichelle in reply to Michaeladell]

Yep me too-resting does help with breathlessness and palps, i just wantvto be sorted out but it takes several months, im whacked today as my 12 year old daughter came home from school and in hand with her best mate and been waiting on them hand and foot today- i could sleep for england!! Hope your urgent op goes well and recovery is minimal. ❄⛄

[Michaeladell in reply to Rmichelle]

I can’t take any time off work. I’m a self employed contractor and if I don’t work I don’t get paid. It’s enough to take off time for medical appointments. So I just have to go in and put up with feeling awful

[Rmichelle in reply to Michaeladell]

Thats awful, im blessed with sick pay at the moment then going back on a phase return for only 2hours a day.xx feel bad for you.😊

[Rmichelle in reply to Michaeladell]

Just seen your reply now-der!!

[Michaeladell in reply to Rmichelle]

Is it normal to go so underactive with Graves?

[Rmichelle]

Hi michealadell, my goodness your levels have changed quite quickly to hypo, are you still on carbi like me, im on 5mgs now but my levels are lowering to hypo, i see endoc next week, good you have no nodules- im not so lucky i have nodules and a thickening of the isthmus. I think you may need to lower your dose or change meds but see what the more experienced peeps say.xx

[Michaeladell in reply to Rmichelle]

Yes I’m still on carbi. 5mgs per day. Last thing the endo said was if I’m still hypo on the results from my bloods taken today, then take me off carbi in 6 weeks ......

[Rmichelle in reply to Michaeladell]

M, i am getting your messages in email but cant see them on the the thread page, i am still learning and absorbing info myself and honestly dont know about tge graves aspect, i was told if you have graves your tsh would not move very much and will remain supressed? I think it would be helpful if you put out a new post for more experienced people to answer, its confusing isnt it. I think i will have a few questions myself today as i have posted my new bloods through today. Endo says i have graves even though he hasnt tested tsi!! I dont think i have but i have hashis and are celiac so i have to be gluten free, you have had tpo tested which your antibodies are high like slowdragon said and she knows her stuff. Put out another post!! I would.xx

[ilenuca]

TRAB can also be detected in patients with Hashimoto and those with hypothyroidism. TRAB may have both stimulating and inhibitory effects, but overall there is a predominant stimulating effect.

It would be interesting to see the first results when they diagnosed you with Graves

[Michaeladell in reply to ilenuca]

Only got the formal diagnosis of Graves this week based on the TRAB of 1.9. My first ever results in September were TSH less than 0.05 and T4 26.8. That was on the 7th September. I have only gained weight. Had no weight loss at all. And used to be red hot but now I’m neither hot or cold

[Silver_Fairy]

Why on earth would they leave you on Carbimazole another 6 weeks if your levels are hypo now? Doesnt make sense.

[Michaeladell in reply to Silver_Fairy]

That’s what I thought too!! I have w call out to the endo. Hoping for a response on Monday. My TSH is now 35.19. Up from 12.5 4 weeks ago

[Silver_Fairy in reply to Michaeladell]

No, thats ridiculous. If it were me Id stop the Carbimazole and make sure I was tested in 4 weeks (I would normally say 8 weeks but your levels seem very sensitive!)

[Michaeladell in reply to Silver_Fairy]

Do you think I need any levothyroxine?

[Silver_Fairy in reply to Michaeladell]

That would be a decision made on your levels without Carbimazole. I would wait and see.