Someone please tell me this will get better

I dont know what to do.On block and replace for Graves and its not working. Its middle ofbthe night and I feel like I am going to have a heart attack, My heart is beating so hard and fastlI cant keep a limb still, sweat is literally pouring off me.What are you supposed to do?

[Hennerton]

I think you should call your GP/Endo as you probably need a blood test to see what your levels are. Perhaps you would be better on just Carbimazole at enough to control the thyroxine output from your thyroid but not suppress it. I used this method and whilst I ended up having TT, I managed to be reasonably stable most of the time. Are you on a Beta blocker? This would help to slow your heart whilst you get the level of thyroxine under control. Hope you get help soon.

[Hidden in reply to Hennerton]

Thankyou hennerton wil, request Beta blockers

[silverfox7]

Hi

Sounds nasty and frightening and both are things that will make your heart race more which won't help. Think you have two alternatives, ring for an ambulance and say you think you have a heart problem, or ring for your doctor/Endo. Either way you need to be seen today so its nearly 7 so would be tempted to ring Endo as I suspect your GP MIGHT NOT BE AS CLUED UP, sorry didn't cancel caps, and either GP or whoever comes out may just admit you anyway. With Endo he is in a better position to advise and act. Betts blockers may be necessary short term but Graves is a closed book to me so speak to the boss. He may well say it happens and at least tell you what to do but think he's safest option. Let me know what happens.

[Hidden in reply to silverfox7]

Thankyou have posted update

[Jackie]

Hi Graves is horrible. However, best treated by frequent, very ,blood tests for TSH, T4 and Free T3. As it can vary between hypo and hyper, it is very important to treat on those results, which will mean varying the treatment. A good Endo?

If your HR ( If it stays .like that ie not swinging, call 999. heart rate) is at 150 or higher, a minute,manually done, neck is easier, more reliable ( do not use the thumb)Hormones out of balance often cause night sweats etc. If you are breathless, this is important, then be sure to ask for a cardiac referral. A good one, is well used to thyroid patients and visa versa.

You will get better but it will be a long haul and then relapses, but hopefully not this bad.

Best wishes,

Jackie

[Hidden in reply to Jackie]

Thankyou jackie

[Fruitandnutcase]

Hope you managed to get through the night. You will need to get your levels checked as soon as possible. I had a spell a few weeks after I added 50mcg thyroxine to my 40mcg Carbimazole where the palpitations started up big time. I was positive I was going hyper again and someone here suggested I actually needed more levo which turned out to be correct.

I saw my GP who prescribed amitryptiline until my endo appointment came round - I had about a month to go until my appointment ( I can't take beta blockers) that worked and as I wasn't keen on taking antidepressants as soon as the palps stopped I phased the amitryptiline out and when I saw my endo she raised my levo and I felt fine. Next time I felt similar palps I was able to persuade my GP to raise my levo for me even though I was 'within the range'. It's pretty horrible though when that happens. Hope you feel better soon.

[Hidden in reply to Fruitandnutcase]

Thankyou fruit and nutcase

[kashka]

Hi

I feel your pain.Not nice at all.Are you on a beta Blocker to get your heart rate down?

Please go and see your GP or phone your Endo as they may have to change the dosage on your meds.Please let us know how you get on.It's such a scary part of Graves and without Beta Blockers it can go on for a while for the dosage of your meds to kick in.You should be on Beta Blockers.Please insist they give you them.Hope you feel better soon.xx

[Hidden in reply to kashka]

Thankyou kashka

[tilly83]

Anxiety can make this worse. I had beta blockers for first six weeks at list on Carb, now still take them but only usually if I've had a few drinks (not going to give that up completely!) I would ask for Monthly blood tests so you can see levels and request TSH, T4 and T3 (they sometimes don't do the latter if TSH is 'normal'). In the meantime treat yourself to acupuncture, I found that really helpful, there's herbal tea that reduces palpitations and don't have hot bath before going to bed......xxxxxxxxx

[Hidden in reply to tilly83]

Thankyou Tilly

[Hidden]

Hey there

I'm assuming they have tested your antibodies to confirm the diagnosis of Graves? Graves is clinched by the presence of TRABs (TSI) and you can also have elevated TPO antibodies. However if you also have elevated TgAb then you have graves AND hashis which is the nightmare world of HASHITOXICOSIS. I had this and like you was on CBZ and then on block and replace and because my thyroid was so inflamed it was firing out hormones regardless of the blood results. Indeed my third opinion decent endo said the inflammation will drive 70% of your symptoms. Your thyroid is the victim in this, the culprit is your immune system and the inflammation. There is not a lot of alternative stuff you can do to cure Graves but it can help you manage it and bring down the inflammation. Lemonbalm tea, going gluten free (very important, if you can bear it the Paleo Autoimmune Diet would be even better), L Carnitine, Selenium (200mcg a day, no more than 400mcg). Elaine Moore's website is a good resource. The others are right, you need to be blood tested, ideally every two weeks and they need to test your Free T4, Free T3 and TSH. Dosing by the TSH in Graves is pointless as you have TSH-Receptor antibodies (TRABs). Research from Japan shows that block and replace is an effective treatment but only if it is carefully monitored. Here, they bung you on drugs and send you away. It could be your thyroid is not fully suppressed by the CBZ (see point above about inflammation) and you are now adding extra thyroxine to the situation ... that's why blood tests are very important. In the end I battered my GP into submission. Also you need to check your iron, minerals and vitamins - as Graves speeds up your body you use up nutrients very fast, your digestion also goes too fast so you don't absorb stuff from food properly. Ask your GP for ferritin, vitamin D, calcium, B12, Folate - full metabolic panel. He also needs to be doing a full blood count andyour liver enzymes - CBZ is a toxic drug. Any flu like symptoms, straight to the docs or A&E.

Are you under the care of a thyrotoxicity clinic? Have they given you an uptake scan and an ultrasound? The reason I say this is my antibodies were not properly tested (as I had TED they didn't bother to fully check, so I was only half diagnosed) and also despite my neck looking like a tree trunk, I was not given a scan until almost three years after diagnosis (if they'd checked my antibodies, my TgAb in the 1,000s would have given them a bloody clue!) and it turns out I also had thyroid cancer. I was naive and I was too nice. You cannot nice your way through Graves disease, it took me a while to cotton on to the fact that I needed to start being assertive. Its my body afterall!

If your endo is not listening to your SYMPTOMS and is just looking at blood tests then you need to find another doctor. Now is the time to put your hands on the steering wheel of your own care. Sad to say but no one is coming to the rescue, you are going to have to rescue yourself. Also endos are quick to offer definitive treatments (RAI or TT) but life without a thyroid is VERY serious, you should think very very carefully before making any irreversible decisions. The priority now is get things under control. Betablockers might be an immediate help until your blood tests are in.

Hope that helps, hang in there

Rebecca

x

[Hidden in reply to Hidden]

Hi rebecca I have no idea what antibodies I have just told Hraves, I havenot had any scans or uultrasound. I am not very knowledgeable at all as newly diagnosed. Feel overwhelmed by it al, at present.Thankyou for all your advice, My endo didnt even tell me my last blood results just said I didnt need to bother anout that now I am on treatment. I am going to have to toughen up!

[Hidden in reply to Hidden]

Hi there, you are welcome and just take it in bite size chunks, it's a bit overwhelming. Just to say iyou need to GET AWAY from any doctors treating you for Graves just by testing the TSH!!!!!!!!!! That tells me they have no clue what they are doing.

Also a TSH that is now at 1 if you have graves indicates you might be on too much Carbimazole. An upward movement in the TSH is an indication of overtreatment as you have antibodies that block your TSH.

Your GP needs to test TSH, Free T4, Free T4 and your antibodies, TRAB, TPO, and TgAb. How can they properly diagnose and manage you without a proper bloody diagnosis!?! You need your iron and all your vitamins and minerals tested too.

Your endo is also wrong to say your blood results do not matter, your blood results are crucial in the management of your illness and the adjustment of your medication.

Can you ask for a second opinion with a Graves disease specialist? There should be a list of good endos, a lot of endos specialise in Diabetes, not thyroid, let alone Graves!

Good luck , be brave.

Rebecca

x

[JanW in reply to Hidden]

Hi always insist on a print out of all your blood test results that way you can see any fluctuations.

[Hidden in reply to JanW]

Thanks JanW

[Hidden in reply to JanW]

Thanks Jan the receptionist at my GPs will print out a cooy of results albeit grudgingly!

[JanW in reply to Hidden]

I know awful snooty lot aren't they take no notice.

[Hidden]

Thankyou everyone for your help and advice, I couldnt het an appt with GP but got a ring back 3 hours later.zThe labs haf only done TSH mot t4 t3 as requested. TSH was 1.Told me to ring endocrinology. My endo on holiday soaanother one rang me back within 5 minutes. Had no results to go on.zTold me to see GP and ring back if cant het appt.My GP rung me and I am bookef in for a wait appt at 4 to listen to my heart and check for infection

[Hidden in reply to Hidden]

This is awful p1pp1ns, they can't know what your thyroid is doing without at least testing T4 as an absolute bare minimum. The whole point of Graves as Rebecca says is that TSH is suppressed and bears no relation to what T4 and T3 is doing.

Please point the NICE guidelines out to your GP when you speak to them:

cks.nice.org.uk/hyperthyroi...

"Monitoring of block and replace regimen:

Dose titration of thyroxine replacement therapy: monitor FT4 and TSH every 4–6 weeks, adjusting the dose of levothyroxine accordingly (in this regime the dose of carbimazole remains constant). Once stabilized, check in 3 months.

Maintenance: once treatment is stabilized, check FT4 and TSH less frequently (e.g. every 6 months)."

They're quite sketchy guidelines, but at least they say T4 must be tested.

H x

[Hidden in reply to Hidden]

Thanks hampster having blood tests this morninh have posted an updatex

[Fruitandnutcase in reply to Hidden]

Glad to hear how you are getting on. Terrible that the endo had no results to go on and what a nerve to be told you doont need to know your results now you are being treated. Especially when we heard today that hospitals will happily sell our test results to insurance companies!

I hope your GP can get you sorted out and get more bloods taken. You have to be given your test results if you ask although some people seem to have difficulties getting them. Good luck

[Hidden in reply to Fruitandnutcase]

Thanks fruitandnutcase have posted update

[Hidden]

Hi everyome thankyou all for your support and concern.Just a quick uodate, After the farce I saw a new GP.She was more interested and said she was newly qualified. She gave me a good examination then liaised with one of the other GPs.She has booked me in for blood tests this morning and is going to write on the form TSH alone is no good.She gave me a letter to go for an ECG and a prescription for betablockers.Haf a much better night slept 8 hours straight through.Going to insist on some answers when see endo next week! Seems Graves is more serious than I first understood. Feeling better for the sleep and palpitations not as baf.Once again thankyou to all who responded.....kim x

[Fruitandnutcase in reply to Hidden]

That's great news Kim. Yes, Graves is a really serious condition. You are really very ill even though you probably look ok - in my case had lost so much weight I actually looked better than I had done when I was healthy.

Nothing to beat a whole night's sleep is there and once you are rested and not feeling like your heart is going to pop out of your chest you will be much more able to deal with your endo when you get there next week. Lizzie x

[Hidden in reply to Fruitandnutcase]

Thankyou yes I think I under estimated what Graves can do but I am learning all the time