Feeling alot annoyed: Hi everyone I have... - Thyroid UK

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Feeling alot annoyed

Kirstylstocks profile image
34 Replies

Hi everyone I have hyperthyroidism hope your all doing great. I am so annoyed, I recently asked on another post that my doctor stated that my thyroid levels are not improving well see a different doctor a week later and he said that the 40mg carbimizole tablets are working and he read my blood results out I cant remember the results but that's fine I see endo Thursday. My point is I got all worked up stressed anxious thinking all sorts because the (incorrect gp) told me my levels are not improving when in actual fact they are. I wont be seeing that gp again.

Anyway on another note if my levels are improving why do I still feel crappy everyday getting all the symptoms?

This is going on not having graves.

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Kirstylstocks profile image
Kirstylstocks
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34 Replies
Butterfly87x profile image
Butterfly87x

Hey remember me?! Similar results to your and also similar update to yours now it seem also...got my blood results today and same story they’re improving (t4 was 27 it’s now 21, t3 was 12 and it’s now 9) this is in a 3 month difference so they are taking they’re time... and yeh same thing I still feel as crap if not worse than before however I’m not on meds so I can’t say for sure why your not feeling any better but I know for me it’s cause even though they are improving they’re still so high hence all the crappy side effects. Hoping to see dr this week and start on some meds to sort out the symptoms but I guess the only silver lining for us both is that they are going down even if it is slowly!

Kirstylstocks profile image
Kirstylstocks in reply toButterfly87x

Yeah I remember. I just feel so low and have no possative thoughts my manager had a chat with me today and said I need to get rid of this negativity but it's so bloody hard she tried to help me my stress levels are threw the roof too. I'm phoning "mind" up tommorow I cant go on like this then I think to myself am I feeling this poorly because I'm making myself feel this way am I feeling better really and just letting my head take over its horrible i feel like nobody understands truly how I'm feeling as in people that know me.

Butterfly87x profile image
Butterfly87x in reply toKirstylstocks

Trust me I know I get that feeling. I was feeling shit all week and kept it to myself cuz my hubbys a dr so he accesses my results first then shows me and I was thinking what if I’m complaining all this time & my results end up coming back normal and it’s just cuz I’m used to feeling so crap all the time but then no lo & behold they are crazy high so it’s no wonder. That’s the shit thing about thyroid compared to other things u look normal (ish) on the outside but how ur feeling inside is a whole different story!

Kirstylstocks profile image
Kirstylstocks in reply toButterfly87x

Sorry I'm only just replying yes it's awful. I see my endo today do hopefully he can shed some light on things I've started listening to meditation music to help me sleep on a night and it works. I feel calmer but not quite there yet with my stress and anxiety

Greekchick profile image
Greekchick

No one understands unless you have this condition - hyperthyroidism- that the bloodwork is not a reflection of the symptoms you have and how you feel inside. It is one of the toughest conditions to have.

I really get how you feel - I always had normal blood work before my TT but was a nervous wreck and stressed all the time. Losing hair, having to control my anxiety all day at work and then collapsing at home at night .

I’m much better since my TT 10 weeks ago, but still things are not normalized yet. I’m hopeful I will get there as every day seems a bit better.

Sending you both positive energy and hope things get better for you both, Krystalstocks and butterfly87x.🤗

Kirstylstocks profile image
Kirstylstocks in reply toGreekchick

Thankyou this is what happens to me when I go to work but I don't finish until 10:15pm on a night so you can imagine how this effects me

Jeanjeanjeanx profile image
Jeanjeanjeanx

Hello, going on the third month with hyperthyroidism and yes to everything about how you feel like over here too. 🙌

Some have suggested I consult a psychiatrist or get routine counseling which doesn't sit too well with me. So I'm trying mindfulness now and considering yoga. Either way this looks tough. Best of luck and hold on. Hopefully it'd get better soon xx

Greekchick profile image
Greekchick in reply toJeanjeanjeanx

Meditation helped me a lot - it allows your body to calm down a bit. I hope it works for you too. All the best and positive thoughts.

Fruitandnutcase profile image
Fruitandnutcase in reply toJeanjeanjeanx

Meditation helped me too. I just decided to be kind to myself and to be selfish too. I did as little as I could and I definitely didn’t do anything I (or other people!) felt that I should do when I was at my very worst. Get loads of rest - it’s really boring but it does help.

Don't know how you are being treated but I was treated with block and replace -three months on 40mcg carbimazole then 40mcg carb and ever increasing amounts of thyroxine. It took exactly a year from first being diagnosed.

I was what I would describe as ‘volatile’ for quite a few months. I honestly thought I was either developing dementia or that I was mentally ill - I wasn’t either of those things it was the Graves.

I really don't think people do understand how you feel inside. My husband thought he did then he thought I could host all of our neighbours for a Christmas party - in his dreams as I pointed out - I couldn’t figure out how he could even think that was possible. Needless to say I didn’t and I can remember leaving the party that was organised, early, alone and feeling beside myself upset. I must have been horrible to live with at that point.

I lost loads of weight so I looked better than I had done for years - on the outside. Inside I was a mess. I was working on an ‘as and when’ basis so I cancelled the work I was booked for in the January which was three months after diagnosis and before I started the levothyroxine and by the time I needed to work again in April I was fine and able to work again.

I also lost ‘friends’ because I was so intolerant. Things I had lived with and ignored for years - well I stopped putting up with that sort of thing. The friends I’ve got now turned out to be real friends.

It’s not good enough that your doctor made a mess of his interpretation of your blood tests, life is tough enough with Graves without some idiot telling you that your pills aren’t working when they are. He needs to go back to medical school!

I would ask for a copy of all your blood tests along with their lab ranges. If you are in the IK you are legally entitled to them, if you are in the US i imagine you have paid for them. I’d also keep a note every day of how you are feeling, just bullet points, you don’t need an essay but it helps, you can look back and see that you are actually making progress when you probably don’t feel as if you are.

Make sure your vitamins B12 and D as well as ferritin and folates are well up in their ranges and my pharmacist told me to take high strength vitamin C which I always did - 1000mcg slow release vitamin C with zinc.

Let your boss and anyone else you want to read this - it k8nd of sums up what your life is like at the moment - you will get back to normal, you might not feel you will at the moment but you will. Good luck with it all.

tpauk.com/main/article/lett...

Kirstylstocks profile image
Kirstylstocks in reply toJeanjeanjeanx

Thankyou I've started listening to meditation music on a night now as I'm falling asleep I do feel calmer but not quite there yet

Cheshiregirl profile image
Cheshiregirl

Hi, Thyroid conditions hypo/hyper are notorious in that symptomology does not necessarily reflect the level of your condition. Symptoms are a very long list for both, and you can have 1, 2 , 3 or more from the list.

So I suppose the symptoms you have are mostly individual to you and that’s the way your body reacts.

I’m on the road to reduce my carbimazole dosage with my endo cause I tend to fall asleep in the daytime even on a low dose and I don’t want to go redioactive iodine route. I also put weight on really easily so have to watch that.

Good luck on your journey .

Kirstylstocks profile image
Kirstylstocks in reply toCheshiregirl

I'm always hungry too and eat when I'm hungry even when I know I've had a full meal I'm also waiting on a pre OP appointment to for a thyroidoctomy.

Kirstylstocks profile image
Kirstylstocks

Thankyou to everyone. I will reply again soon as I get chance but thankyou so much

CarmenML profile image
CarmenML

Hello, I am in the US. I was diagnosed with hyperthyroidism in 2012, after rashes, hot flashes, heavy periods, high pulses, irregular heart flutters, heart beat in my head, and a month of 24-7 insomnia and a.loss of 20 pounds. After that month of insomnia, I begged dr for anything to make me sleep, I felt like a zombie, i could only get 2 hours of sleep with lunesta. I am a lawyer and couldn't focus, anxiety and was crying all the time. I had no primary physician and was going into urgent care. They called me on weekend with diagnosis after the blood test. I was off the charts.

They started me on tapazole and I had to take off 6 weeks, my pressure was sky high, had to go on betablockers and sleeping pills. I never felt right. Too much or not enough, and got muscle pain and burning, I finally got a primary physician, a cardiologist, and an endocrinologist out of it!!

The cardiologist finally said why are you doing this to yourself, just have the thyroid ablated, and take the supplements. I hated the thought of killing a part of me, but I finally did the RAI treatment.

Once I was "balanced" I was much better. Downside, I gained 30 pounds... on Synthroid over the past 5 years. Now, i started Keto and am taking T3 also, so I am 10 pounds from my goal.

I know folks don't like zapping or removing the thyroid, but I find it is much easier that trying to control the overactive thyroid. But make sure you are on T3 and T4 replacement, find a dr that is up with the times...

Good luck to you!!

Kirstylstocks profile image
Kirstylstocks

I've had my condition on and off for 7 years and have a goitre so I accepted the opperation route. And thankyou

Butterfly87x profile image
Butterfly87x

Omg yes the memory loss, feeling like you have onset dementia I relate to this so much and it’s especially bad the past two weeks. We’ve just moved house and trying to pack up a house while remembering where all the essentials are while also looking after a toddler & a baby...my brains fried! And the anxiety on top of it is impossible to deal with. I feel like my body’s really at a point now of saying I can’t handle this I’m going to shut down from exhaustion! Need to get on meds ASAP if they help at all.

So nice to have people that understand it properly!

Kirstylstocks profile image
Kirstylstocks in reply toButterfly87x

I can totally relate to this I got it that had to a point of not reading a clock properly

Greekchick profile image
Greekchick in reply toButterfly87x

The meds do help - in my case I became resistant after 2 years, so I needed a TT - but I feel for you and understand what you are going through - wishing you the best.

Greekchick profile image
Greekchick

I am a uni prof and I was forgetting what I was saying in class and at meetings - and I would be talking to someone and couldn’t remember their name in the middle of a conversation . Plus the rushing heart from the anxiety of not being able to remember .... at least most of that is gone post TT - and it will get better once meds are better calibrated. There is hope!!! 🤗🤗

Kirstylstocks profile image
Kirstylstocks in reply toGreekchick

I have been to see my endo he as confirmed I do have graves disease he is also going to post out all lab tests results so this explains a lot also it is my thyroid which is causing my goitre to swell he as examined my eyes and said to book appointment with my opticion. As he says my eyes are fine. And he thinks I should come out of work until my thyroid is under control as working is causing my symptoms to flare up and not helping me my levels are slowly improving but until they are improved my symptoms wont change. I'm having bloods done for my vitamin levels and checking for diabetes. X

CarmenML profile image
CarmenML in reply toGreekchick

Did you ever start a sentence and forget what you said at the beginning of it?? OMG, I thought I was starting Alzheimer's!

Greekchick profile image
Greekchick in reply toCarmenML

OMG like every day until I had my TT - I thought so too! Then I realized it was my thyroid and couldn’t believe it - the worst part was forgetting what I had told my students or my admin assistant - and then having to cover for it! What can you say? Sending good thoughts your way!

Kirstylstocks profile image
Kirstylstocks in reply toCarmenML

Yeah all the time or when at work I forget what custermer as just asked for then I go to wrong place for it

Kirstylstocks profile image
Kirstylstocks

Thankyou so much for all advice you have given on here I really appreciate it

Greekchick profile image
Greekchick

At least you are now confirmed and you can work with your MD to sort things out. So glad to hear your eyes are OK. I took time off from work when I had my first swelling episode 2 years ago and I would recommend it. It will get the stress under control since that, in part, causes the production of more thyroxine and worsening of symptoms. Rest and quiet if you can help a lot. Thanks for update and all the best. 🤗

Kirstylstocks profile image
Kirstylstocks in reply toGreekchick

Thankyou I'm going to phone my doctors on Monday and get seen and if he says again come out of work then I will I'm just scared of losing my job

Greekchick profile image
Greekchick in reply toKirstylstocks

I understand how you feel - see how it goes once you get the proper meds and how you feel after that. Sometimes just a few days helps a lot. My meds kicked in after about a week or so and I felt much better.

Kirstylstocks profile image
Kirstylstocks in reply toGreekchick

I've been on new dose 6 week now but not feeling any better I'm guessing that's down to graves?

Greekchick profile image
Greekchick in reply toKirstylstocks

Yes

Kirstylstocks profile image
Kirstylstocks in reply toGreekchick

Does carbimizole treat the graves?

Greekchick profile image
Greekchick in reply toKirstylstocks

It could be that the meds are not working as they should - maybe dose? Talk to MD about this when you see him - I can’t judge as of course I am not an MD - and the bloodwork will tell part of the story. In my case , I became resistant to the medication but I can’t say that you have the same situation. Hang in there.

Kirstylstocks profile image
Kirstylstocks in reply toGreekchick

Yeah very true. I asked endo today and he said the medication is working but until they get my thyroid removed or controlled I wont feel any better. He thinks I should leave work until my thyroid is sorted because work will flare my symptoms too even tho my job isn't really strenuous I work on a custermer service desk I was doing full time but now I'm doing 16 hours a week but I finish my shift at 10pm

Greekchick profile image
Greekchick in reply toKirstylstocks

Those are brutal hours - with Graves, no wonder you feel so bad! And yes, carbimazole treats the Graves. Make sure you get regular blood work for white blood count and liver enzymes - these drugs affect their function.

I now understand why he wants you to take off work - but that sounds like a rough decision for you . I can’t advise on that but can tell you that without rest and quiet things will not improve. I worked through my last bout before surgery and I can tell you it was very difficult for me. I’m sorry I didn’t take off before but also felt I couldn’t leave work.

Wishing you well! Message me privately if you have other questions and I’ll be happy to answer if I can. 🤗

Kirstylstocks profile image
Kirstylstocks in reply toGreekchick

Thankyou so much

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