over active graves part 2

Hi Marigold and Bess,

Thanks for the welcome and replies.

Bess - White coat syndrome is a problem with me too I have a machine at home and try and take my BP at least once a week ish. Also I think you are right when you say about GP's not fully understanding thyroid problems hey before being diagnosed I don't think I even knew where mine was let alone what it did of course now I know too much and must bore the pants off everyone

Marigold - Good to know that you feel calmer and your heart is getting back to normal, I'm going to ask about RAI at my next Endo Appt in March, think in the long run it sounds the best option.

Well take care both and I'm so glad I stumbled upon you all.

Kat x

Anyway onwards and upwards not only did the hoover get pushed around but managed to wash the floors as well! Of course now I'm only fit for the sofa!

Hi Bess. I'm on the same dose of propranolol as you, and I know sooner or later I'll have to come off it. I think I'll just keep my head down and hope nobody notices I'm still on it. I'm definitely feeling a lot better.

I have to come off the carb and thyroxine in a couple of months, so goodness knows what'll happen then.

Sorry about your B/P. I don't know what mine is, it hasn't been checked for months. I can check it at home, but the readings are all over the place. I don't think I must be doing it right.

Take care.

Hope everyone is ok.

Marigold

hi all ,just been reading everyones posts ,hope barrys feeling better and glad you are marigold .Its good we can relate to all the horrible symptoms

When i saw my endo on the 18th jan he said i need the RAI now and ive only been on PTU for seven months ,ive also got an app on the 4th feb for a lung function test and still waiting for app to see a cardioligist ,this breathlessness is really getting me down and hope its to do with the thyroid problem and not smoking.When i saw my endo i told him this hyperthoid illness is really horrible and frightening (opps my minds gone)and said he should listen to us patients how we feel even though we are on medication,felt awful after .I was looking somewhere on the net about prices for hyperthyroid mediction carb £7-00 aprox and ptu £117--00

wonder if this is why he wants me to have RAI .welcome to the site bess and kate

take care all sue xx

Hi All,

I had my Appt with GP this morning to discuss my blood results and depression and anxiety questionnaire.

She scored my questionnaire and told me my anxiety was quite high, there is a surprise! She said she could give me some tablets for this week but when I asked would they react with all my other medication she didn't know - so in it went to the computer and yes it would so that was the end of that.

Next I asked for the blood results she was very reluctant to give me any figures all she would say was one figure was in the normal range and one wasn't! She really didn't want to commit herself to any answers even when I asked her outright \"have I gone from overactive to underactive\" she said she wanted the Endo's advice and she was going to write to him.

So I have to stay on everything for now and go back and see her in two weeks and was that okay?

I just said yes because I felt she really wasn't interested.

Have just phoned the Endo's Secretary direct who is going to print out my results and get him to phone me hopefully today or tomorrow.

Final words from the GP were \"once you get your heart sorted out and off the warfarin and get your thyroid medication right you will feel better\" eh hello do you think i haven't worked that out already.

I so so sorry to moan on and on but I feel I'm getting nowhere definitely a case of two steps forward and all that..............

Hope you are all having a good day. Will let you know what the Endo says.

Kat x

Hi Kat. It sounds like 2 steps forward and 300 back. :lol: I phone the endo the day after I've had my bloods checked, and he phones back and gives me the result, and tells me what to do. My GP is like the secret service, you wouldn't think it was my thyroid.

So you'll feel better when you get your medication sorted? That's a new one. I hadn't thought of that. You learn something new every day. 8)

Take care.

Hope everyone else is ok.

Marigold

Hi All

It's she who moans back again.............

Managed to get my levels at last so if you guys could let me know they mean that would be great:-

TSH 5.95

T4 12 (I know this was 16 last time checked)

Marigold your reply really cheered me up, I think like you I am going to use the direct to Endo route from now on.

Take Care All,

Katherine x

Hi Katherine. I would say your TSH is high and your T4 is right at the lower end of the normal range. Did you speak to the endo? I'd ask about your medication. I'm on 40 mgms. of carbimazole and 75 mcg thyroxine., as well as propranolol.

My T4 is 25, it was 18 last time., and 35 the time before that. My TSH is 0.05. I feel best when my T4 is about 15.

This is an awful illness, but we'll get there in the end. :D

Take care all.

Marigold

Hey Kaherine - A Fellow Fifer with Graves. Don't think there's too many of us around in our wee Kingdom!! No doubt you'll have read my sorry tale in previous posts. It sure is a long road to recovery and at times it does seem like 2 steps forward 3 back. I am being looked after very well by my endo - although my recent blood tests show that my levels are up again so I am now on 10mg carbimazole daily. Its a real bummer - you just think you're getting somewhere then splat - you get a surprise. I've had this disease for over 2 and a half years now and although I am not 'perfect' I am a million times better than I was a couple of years ago.

Luckilly I dont have the anxiety problems that many Graves sufferers have and the heart problems I had were only temporary at the outset because I'd probably had Graves for ages before I went to hospital in a crumpled heap and I was diagnoosed. Where in Fife are you?

Lotte

Katherine - Sorry I was so excited by the fact you were from Fife that I forgot to comment on your blood results. I agree with Marigold totally - your TSH is high and your T4 low. You are probably heading hypo and you might get a reduction in meds. Did your endo give you a call with his thoughts ? Hope he's sorted it out for you.

Take care all

Lotte.

Hi All, Kat your tsh is defo too high & t4 a little low here in oxfordshire the range for t4 is between 11-24 but, it depends on your location as for the anxiety that comes from having graves but beware the depression diagnosis thats what i was told & was prescribed anti-depressants. When i saw the endo he took me off them he seemed to be of the opinion that it was all my thyroid & in my case he was right!!!!!!!!!!! So please check carefully. Hope everyone else is ok? I seemed to have missed so much since xmas will have to read all the threads & catch up on all thats been happening with you all!!!!!!!!Elaine.

Hi Everyone,

Endo finally called this afternoon he has dropped my Carbs from 20mg to 10mg a day. He hopes this will start to level out my thyroid, fingers crossed.

Still to remain on beta blocker and warfarin.

Elaine/Marigold thanks for level advice I think my current levels are too low for me as feeling really awful with more hypo symptoms than Graves. I have only ever been told my T4 levels before but from now on will ask for TSH also. How often do you all get your blood tested?

Lotte small world or what? I'm in the North East not quite the Neuk fairly close to St A's where I work. What about you? We have been here for nearly 7 years and love it, so do you go to The Vic? I have read your previous threads and you seem to coping quite well, although not so good about your levels going up. I'm so glad you don't suffer

with anxiety, it's really limited what I'm able to do, don't really cope very well in busy crowded places so Tesco is a challenge, thank god for online shopping

Right that's enough of my ramblings for one evening.

Take Care everyone,

Kat x

This forum is amazing its so good to read about people who are in the same boat as I am-not that I would wish this on anyone!

Just a quick question- the anxiety for me is the worst part of Graves. After months of swinging my over active to underactive my endo is finally happy with my levels, TSH 1.5 (0.3-5.6) and T4 is 14 (6.3-14). I have started to see definate improvements but cant shift this damn anxiety. My doc tells me I may have an underlying anxiety problem nothing to do with Graves! Is this likely or do you think it will sort itself out once my levels have been stable for a while?

Thanking you in advance

Hope you are all ok

Ellen xx

Hi Ellen. How long have you had Graves? Have you always been an anxious sort of person, or did it start when you started with the Graves?

Anxiety is a symptom of the disease.

I've always been a bit on the anxious side, I tend to look for something to worry about. You should feel calmer once your levels settle down.

Hope you feel better soon. Keep in touch.

Hi Kat. I hope the lower dose of carbs helps. I usually have my bloods checked every month, but it's every two to three weeks at the moment as my levels are up and down.

Take care all.

Marigold

Hi marigold

Thanks so much for replying to me. I was diagnosed in April of last year, but have struggled a lot since and am still not back at work. I've never been anxious before, it started a couple of months before I was diagnosed. Hopefully it will calm down soon.

Thankyou again x

Afternoon All. Elaine, good to see you back. Hope life is settling down a bit.

Kat - Glad you got your Carbs reduced - hope you feel better soon. I feel rubbish if my T4 goes down to 14 or below. My endo prefers it to be at the lower end of the scale so as to avoid a repeat of toxic thyroid storm but to be honest I feel best when I'm at about 17 or over. I have never seen my GPs about my thyroid situation - bless them they try their best but they really don't have their heads around overactive thyroids generally and Graves in particular.

Yes I attend the Vic. Can't name names etc. on here of course but the chances are we see the same guy. And, we must practically be neighbours! I am on the western edge of the East Neuk and about 10 miles from St A. Lived around here all my life. You don't think it's something in the water hereabouts do you............?

Take care

Lotte.