Feeling hyper again.

[SoozeJ]

Hi all,

Looking for some advice. I'm feeling hyper and quite unwell after stopping carbimazole in Jan 2018. Heart feels racy, especially after eating. Feel headachey, and a bit light headed/ spacy, tremor seems to have come back, nauseous and just generally a bit fragile and wobbly. Although it's the racing heart that makes me feel particularly ill. Just general walking around the house feels too much. Next appointment with consultant is March 8- so no too far away . But too long to keep feeling so crap. Decided I needed to review my situation sooner. Got bloods done yesterday- no results yet. Went to GP this morning. Burst into tears I was feeling so off- which is so unlike me. Results go direct to consultant rather than GP so he couldn't see them not give me any advice, except perhaps use propanalol again. Have rung consultant secretary asking them to look out for results and ring ASAP if there was a suggestion to make any change to meds. No call as yet- GP suggested this was a good thing as if results were really worrying I'd have had a call.

Brief history:

Diagnosed hyperthyroid in June 2016.

Started carbimazole sept 2016 gradually moved up to 40mg, reduced to 30 at some point, then 10mg in November 2017. And advised to stop altogether in Jan 2018.

I haven't got the consultant blood results that have been taken in between times, but have asked for them. Consultant confirmed antibodies and graves... I don't know what antibodies were detected or levels. I can't see this on the blood forms from GP

I've attached blood results that have come back to my GP over the last 18 months . I think it's likely that there are gaps in the info as I haven't got the ones that went to the consultant.

Is there's any sense that can be made if them? And any ideas about to help myself in the short term whilst I'm feeling so rubbish- and possibly in the longer term if consultant doesn't think going back on carbimazole is appropriate. I am reluctant to have RAI as she's suggested a few times.

Thanks in advance

SJ

[janRoll]

I was exactly the same, they put me on beta blockers and carbimazole again, i honestly feel like a guinee pig, had radio iodine that didnt work...now ive been told they gonna start all over again, i'm so fed up.

[SoozeJ in reply to janRoll]

Sorry to hear that janRoll. Are you feeling very un well?

[janRoll in reply to SoozeJ]

made me suffer depression, so i'm on sertraline...last week stopped my thyroxine because i was given to much of a dose. i tell you? I never see the same doctor anymore, it's different ones. Don't know where i am.. yeah i feel pished off lol.

[janRoll in reply to janRoll]

i wished i had the operation to remove my thyroid glands now. and not had radio-iodine.

[bantam12]

Your results are to small to read.

[SoozeJ in reply to bantam12]

I've been trying to edit the post as the image was too blurry... (tremors!!) i can't see how to upload a better picture, or edit my post 😕

[janRoll in reply to SoozeJ]

hun? call up your endo for appointment or the doctor because i ended up in hospital due to your symptoms.

[janRoll in reply to janRoll]

sorry lol i saw u did.. no joy though? hospital.

[SoozeJ in reply to janRoll]

Been to GP this morning and rung endo's Secretary at hospital. What happened when you were in hospital... why taken in?

[janRoll in reply to SoozeJ]

when first diagnosed? i spent a month in bed and lost 3 1/2 stone... started to get better then the tremors came back and heart rate BP high... was rushed in for heart scan... felt light headed . sick.. dizzy...plus id lost me marbles, didn't even know who i was. Don't let me scare you, thats what happend to me

[SoozeJ in reply to janRoll]

Wow, sounds like a nightmare

[janRoll in reply to SoozeJ]

I feel it still is , because im always confused to what the endo specialist is on about. always staring at the computer and not me.lol

[Silver_Fairy in reply to janRoll]

Sounds like you may have had a thyroid storm janRoll .

[SeasideSusie Remembering in reply to SoozeJ]

Soozej

To edit your post, click on the down arrow V below your message and select EDIT then delete that photo.

Two pages of results is highly unlikely to be readable in one picture even if you upload it again. Why not type them out, I know it's a lot and a pain, but that way people can help. You might not need to put all the results in anyway, add those that are relevant.

[SoozeJ in reply to SeasideSusie]

Thanks, I've managed to edit and include just one page.

I guess I wasn't really sure what was relevant and what wasn't!

[SeasideSusie Remembering in reply to SoozeJ]

Looks the same to me. Did you click SAVE?

[Silver_Fairy]

What were your results when the Endo took you off Carb in January?

If you have beta blockers you could try them, they also help with controlling the thyroid hormones, so may make you feel better in general.

[SoozeJ in reply to Silver_Fairy]

Hi Silver fairy,

In Nov

Free T4 4.9 (11.00-23)

TSH 23.5 (0.35-5.00)

Reduced to 10 mg carb

In Jan when carb stopped

Free T4 8

TSH 4.12

(no ranges indicated on letter- presume same as above)

I'm going to try small dose of beta blockers as and when things get overwhelming rather than continuously. Would that be a good plan?

SJ

[Silver_Fairy in reply to SoozeJ]

You were awfully over medicated in November and although a bit better in January, the Endo allowed you to go hypo. Your Endo should have been testing FT3 too, to get a better picture.

He should really have dropped you down to 5mg and tested after 8 weeks. How long had you been on Carbimazole?

I would ask the GP to test your levels.

As you dont know what your levels are maybe yes, just use your beta blocker as and when, but if your heart continues to race, please go see your GP.

[SoozeJ in reply to Silver_Fairy]

Thank you for your reply.

GP rang this afternoon. He gave me some results from yesterday’s blood test over the phone after he spoke to the endo’s secretary. I didn’t have a pen to write everything down- but he said TSH was very low. T4 was at 28 (should be lower than 23) and T3 was also over.

And endo said to go back into 10 mg.

was glad GP made such an effort- possibly bursting into tears left an impression!

So, I’m not as high in my levels as I was in June 2016 when T4 was at 71 but do feel just as bad. Is it possible to feel more sensitive to raised levels after being hypo?

Been on carbimazole approx 20 months

[Silver_Fairy in reply to SoozeJ]

I think you forget how hyper you were, so when it comes back it seems worse. Ask for copies of your results from now on. Dont let the Endo overmedicate you on Carb. And when dropping your dose (after tests if necessary) do it more gradually.

[SoozeJ in reply to Silver_Fairy]

Thanks again. Will try and get results, GP is very accommodating and will print anything off. Tests ordered by the consultant don't go to gp, and endo sec said it wasn't usual to give results out. Will try my best to get them though.

[SoozeJ]

Ah, yes this was the reduced version. The original picture had 2 sheets side by side. I had just assumed that the picture could be zoomed in on with the same clarity as when I zoomed in on my phone. I'll just type them in instead.