Burn and crash

[purple64]

I have graves and last week I was full of energy downside brain races as well upside I cleared out 3 cupboards. Today I ache all over especially neck and back no energy feeling cold and extremely tired. Does anyone else get this?

[Debsoxford]

Yes but I try to stop myself doing 3 cupboards in 1 day. It's difficult when feel so full of energy but I think if I only do a little then I can do a little again later on as I will tel have the energy

Best wishes

[purple64 in reply to Debsoxford]

Thank you Debs. It is hard when you are bursting with energy. I will try and stop myself next time. Trouble is you tend to think I'll do this while I can and then suffer afterwards🙄. Also in my mind I think I should be more active instead of taking a more steady pace.

[Karen321]

Yes it’s common with Graves. You have to learn how to pace yourself as it’s easy to overdo it and pay later. It will take you a while to learn how much you can do and when to rest

[purple64 in reply to Karen321]

Thank you for your reply. It's quite difficult when you are bursting with energy to slow down. Will try and pace myself next time this happens then maybe I won't feel so exhausted when the crash comes. I didn't realise that this could happen despite being diagnosed a year ago. You learn something new everyday with this disease.

[MissZP]

Hi purple64,

I’m exactly the same, was diagnosed 10 months ago. I think part of it is coming to terms mentally with how much this disease affects your day to day living. I don’t think I fully appreciated that when I was first diagnosed. I still have days when I whiz around doing everything then I pay for it the next few days. It’s tempting to go with the hyper days because I know that as well as feeling physically tired the next day I might not feel any drive to do anything either. It’s all a balancing act, try and get plenty of early nights if you do overdo it. Easier said than done, but try to manage your expectations of yourself too. We’re our own harshest critics. Take care

[purple64 in reply to MissZP]

Hi Miss ZP you are absolutely right. When I was diagnosed I thought oh well will just have to get on with it. Little did I know how hard that would be. It is so difficult to

pace yourself when you have this big surge of energy. As you say mentally it's hard to accept that you may not be able to do all the things you

used to. Plus the decision as

to what to do keep on with medication or have more radical. treatment. I also get quite emotional especially if I get angry. Going to try and not do quite so much next time and remember the consequences if I do too much. Hope you are well at the moment xx

[MissZP in reply to purple64]

Hi purple64,

Thanks for the reply.

I get very emotional too especially when I get angry. I think having this disease makes my body overreact to any stress at all. I can feel my blood pressure going up and the palpitations coming on the minute I get even a little stressed. Have you heard of ‘Graves rage’? It’s pretty well documented.

I’m ok at the moment just seen the endocrinologist and ophthalmologist recently, as I also have TED. Free T4 and T3 are right at bottom of range and TSH is on the up slowly. Feel like FreeT4 and T3 could do with being higher as I did feel better when they were higher up in range. Endo has said to reduce carbimazole dose so hopefully I’ll start to feel a bit better soon.

Hope you can find a happy medium and are feeling well.

[purple64 in reply to MissZP]

Hi MissZP

Glad to hear that you feel ok at the moment. We have to make the most of those. I have heard of graves rage and I take citalapram for it but I am very quick to get angry and stressed then become tearful. The anger can be controlled some what but how to keep life reasonably stress free is difficult . Hopefully on a reduced dose of Carbimazole your levels will rise a little and you will feel better.

Take care

[Samy3]

Hi purple64 I have graves and I'm in a remission not on any medication and I feel the same I get bad pain in my right side thyroid with pain in same side ear too ..

Can I ask do u get the pain in thyroid bcs this is where I had goiter and if ur blood results are normal then y we get these pains and y we have good and bad days bcs I'm like that too two three days good then really bad days in a row so confused....pls if u guys can help ...thanks

[purple64 in reply to Samy3]

Hi Samy3 as far as I know I am not in remission at the moment will find out next month when I go back to the hospital . I have had random earache and not thought too much of it but it does just come and go not like an infection. Most of my aches and pains are in my hands feet back and neck.Apparently I have a small goitre and again I can get random sore throats but so far I have just put up with it. Maybe someone else will be able to comment on your pains near the thyroid. Hope it all sorts out for you xx

[Rmichelle in reply to Samy3]

Hey i get shooting and stabbing pains in my thyroid area and also my ear-i have well defined nodules and chronic damage to the thyroid but no goitre on the scan but i do know that my thyroid does swell and thats when i get the pain and also around my jaw!! I have had it for the last 3 days now.🌟🌟

[Samy3 in reply to Rmichelle]

Hi rmichelle that's what exactly I get after few days when mg thyroid swelled up I get pain in neck and ear and sometimes same side headache too

[Samy3 in reply to Rmichelle]

Rmichelle my endo told me with thyroiditis u get pain in ur ear and jaw too sometimes my pain does last 3 or 4 days then for only few days it calms down then when its become inflamed again pain starts happening

[Rmichelle in reply to Samy3]

Yes exactly like that, i was told they are also a hashi or graves flare up thats what my last thyroid consultant said, i have hashi and graves but you are right you can be full of energy and do everything then suffer for it for the next few days exhausted and not able or want to do anything while your body tries to re- couperate. 🌟🌟

[purple64 in reply to Rmichelle]

Just had a few days of being so active which almost makes you feel good again now I can hardly put 1 foot in front of the other and have a sore throat🙄 I so hate this disease 😖

[Samy3 in reply to purple64]

I agree with u I think that's what happens with all of us

[Rmichelle in reply to Samy3]

Sooo true samyb.😕😕

[Rmichelle in reply to purple64]

Yes i know, i thinl when we feel good we do alot a a few days later suffer the consequences of it-ive done alot over the last few days and boy im suffering abit now, exhaustion, breathy and palpy, but my iron def does not help, this disease is the pits!!! At least you know you are not the only one whos best buddies with the sofa!! Said to my hubby i need a complete 2 days rest now as i was naughty today and still went out this afternoon for a walk around with family, im not doing anything tomorrow. Are you with me!!

[Samy3 in reply to Rmichelle]

I went bisceter village today with hubby and kids for shopping and now paying the price really tired....haha

[Rmichelle in reply to Samy3]

We don't learn do we but sometimes it has to be done😊😊have a good evening

[purple64 in reply to Rmichelle]

You too 😊

[Samy3 in reply to Rmichelle]

Hehehe

[purple64 in reply to Samy3]

Hi Samy3 I don't get stabbing pains near thyroid but I do get earache and sore throat🤔 Maybe mine is inflamed 🤔

[Samy3 in reply to purple64]

Its all linked to each other prurple64 I been getting these pains since I got this thyroid issue so been two years now was diagnosed in may 2016

[Samy3]

Hi purple 64 thanks for ur reply that's how I started getting pain in my throat and ear I had a small goiter too two years ago when they diagnosed me I do get sore throats too my sinuses has messed up never had hay fever in my life now I'm getting it a lot its just horrible

[purple64 in reply to Samy3]

Hi Samy3 I will keep an eye on that as I didn't think it was anything important. Thanks for the information. Yet another weird symptom of thyroid disease🙄x

[Samy3]

Earache does feel like an infection but its not bcs they did my MRI ...was normal and other patients said its thyroiditis and when it gets inflamed that's y we get pain but I now get this pain on regular basis

[purple64 in reply to Samy3]

Oh ok maybe that's why I get random earache that doesn't last very long. Will have to make a note of it for when I go to the hospital again. That would make sense if the thyroid is inflamed it could cause earache as throat and ears are all connected🤔

[Samy3 in reply to purple64]

Yes they all are but shame doctors don't think like this my endo discharged me saying that its not related to thyroid

[Rmichelle in reply to Samy3]

Endos always say its not related because they just want rid of us.x

[Samy3 in reply to Rmichelle]

True that's how they are somehow I convinced my GP to get the ultrasound done again they did it year and half ago but I asked him if my results are normal then y I do get pain and few symptoms everyday will let u know what they say

[Rmichelle in reply to Samy3]

Same here i had my 1st scan in november and i was not happy as i was concerned that my nodules were irritating my trachea, so i wanted another one-endo was not concerned and brushed it off but i told him i was not leaving until i got another scan done!! I had the 2nd scan done in march and discussing results with him on tuesday, you had a mri?? Was that to look at your thyroid for a better view? Ive heard mri are better for picking up images?

[Samy3 in reply to Rmichelle]

A very senior old endo was covering up my endo on that day of my appointment when he saw me I was complaining about symptoms he said he goes with the symptoms bcs I had severe pain in my neck ear and head he wanted to check the pituitary that's how he sent me for MRI of my head neck and near but they just told me oh everything is normal only radiologist said at the time of ultrasound that its thyroiditis

[Rmichelle in reply to Samy3]

Ah i see, well alls good with you then-great but i may request a mri too just to check out my pituitary gland aswell, my sisters have pituitary problems. Thankyou.x

[purple64 in reply to Rmichelle]

Don't blame you for wanting a second scan they always seem to fob us off with its OK " normal" !!!! I've not had a scan or Mri but I think they do get a clearer picture. Let us know how you get on

[purple64 in reply to Samy3]

Keep us posted please

[Samy3 in reply to purple64]

I will purple64

[Rmichelle in reply to Samy3]

Oh yes let me know as i will be asking the same question on tuesday!!

[Samy3 in reply to Rmichelle]

Will do rmichelle

[Dee8686]

Do any of you experience high tsh with high frees with graves??

[purple64 in reply to Dee8686]

Sadly like many others they only test TSH last time I was told that it was 2 which is in normal range. Going to ask for free t to be done next time if not will get it done privately🙄

[Samy3 in reply to purple64]

I recently got mine done privately and it is 2.37 its not going under 2 anymore

[purple64 in reply to Samy3]

Did you use blue horizon or medicheck or maybe just paid privately through someone else🤔

[Rmichelle in reply to purple64]

I have all my frees done at my endos hospital as tsh alone is no good, my local hospital wont do them if your tsh is in range! Its ridiculous isn't it-half a job. I have to travel 50miles train and taxi for my bloods but at least its a full monty.

[purple64 in reply to Rmichelle]

Oh ok that's a bit of a trek🙄. I have mine done at the surgery but they only do TSH . Will need a blood test before next hospital appointment so will ask if they will do the frees as well but won't hold my breath 😊

[Samy3 in reply to purple64]

They do not understand that tsh results does not matter its the free ts which are important and the most important is the active freet3 which provides energy and help with metabolism... I think we should go and sit on the chairs of these doctors at least somebody will get help bcs we r suffering so we understand the pain of others really well

[purple64 in reply to Samy3]

We could have a silent protest 😂😂

[Samy3 in reply to purple64]

Hahaha ...oh yes I'm with u ...lol

[Samy3]

Through medichecks purple64

[purple64 in reply to Samy3]

Thanks

[Valarian]

Yup, I think of it as the ‘Duracell bunny syndrome’ - go like crazy, and then flop ! I’m better now my thyroid levels have come down a bit. The main issue is spotting it’s happening soon enough to slow down, rather than simply burning all the energy.

[Rmichelle in reply to Valarian]

I wish i would listern to my body but the trouble is on really bad days we rest anyway but when we feel great its -yes!!! Im gonna do the shopping and im going for a walk and then im going to hoover and then,,,,,, oh im on the sofa again!! I feel rubbish again just recently as ive lived my life at a 100 miles a hour over the last 2 weeks feeling sort of good and boy im suffering now but i do think my dose needs lowering now.xx

[purple64 in reply to Rmichelle]

It's so hard to go steady when you feel so full of energy and you think I must get things done while I can!!!!! Plus you do feel good as well.But it's short lived even when I'm hyper by mid morning or maybe lunchtime I'm on the sofa . Think of the Duracell bunny 🐰😂😂😂

[Rmichelle in reply to purple64]

Yes we must think of the Bunny-🐇🐰but sometimes you just want to be normal and go for it, even if it is short lived. Lol😅 the sofa has been my best friend today and to be honest its been a horrendous day with rain and thunderstorms here in shropshire-so i have not moved much.xx

[purple64 in reply to Rmichelle]

Oh that's a shame. We had storms last night but so far so good today. Good job I like to read a lot so on a bad day I'm on the sofa with a book or my kindle 😊xx

[Rmichelle in reply to purple64]

Yes we had them last night early hours aswell-its a right horrid day- have a good evening -speak soon.xx 😊

[purple64 in reply to Rmichelle]

You too 😊x

[purple64]

That's very true Valarian very hard to stop yourself at the time though. Haha hadn't thought about the Duracell bunny will keep that in mind next time 😂

[Valarian in reply to purple64]

To be honest Purple64, I’m better at remembering AFTER I’ve flopped. When the juice is running, I seem to have a compulsion !