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in reply to: Worried – low heart rate #1068996

Hi all well I made it through the night. I just had to do mind over matter and "get a grip" although I hate that saying. I think its just been worrying because I went from a 120/150 resting heart rate to now 60 and although in mind as a HP that this is normal its just doesn’t help when it happens to you ” title=”Wink” />

With regards to the diazepam I am not taking them daily just when I feel my anxiety going out of control or nerves clawing at my stomach. I don’t like the next day effects. The doc wasn’t concerned at all as its only 5 mg and it is irregular use. He asked about my palour etc.. and I said I look fine, no blueness around the mouth etc.. no chest pain. I also had taken a few mouthfuls of my hubby’s indian curry which I shouldn’t have the day before- that really affects my breathing as an asthmatic so I imagine that isn’t helping to this breathlessness. It is still there but only when I talk.

Its funny you should say about yawning as I am yawning all the time – which hurts my stitches lol however what they need to keep an eye on with me is my ferratin dropping back down to 4 etc…. But to be honest I think that is still ok as I normally get a split down my tongue as indicator that this has happened and so far so good. ” title=”Smile” />

Emily – thanks, I know its like a large pendulum going from one extreme to the other but I need to remind myself I went from a very hyper thyroid to no thyroid….I have to reassure myself. Other than being tired and going from hot to cold in body temp I am actually feeling ok ” title=”Very Happy” /> I am due to get my bloods done on the 24th of this month so all will tell.

In the meantime thanks so much for your reassurance xxx

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in reply to: Worried – low heart rate #1068991

Hey just a quick update – don’t want to bore you all ” title=”Smile” /> Doc called he said that is fine not to worry some days it can be lower – some days higher. I just need to get used to it being slower…..

Just another question for someone on here who had asked me about my op etc.. anyway I was lead to believe by my surgeon and endo that now I no longer have a thyroid I will never have another thyroid storm. But some info out there is seemingly conflicting with this – I haven’t read up on any of it. I am so scared now of hypo comas and now the possibility of a TS? I don’t even think I will be able to read the reply. Perhaps one of our faciliators would be able to explain more thoroughly until I see my endo in Sept..

I have stayed clear of any info on hypo warning as i know now is not the time to be worrying and also they wouldn’t have discharged me home from major surgery without any warnings to look out for. Oh I really need my faith at this time.. I was feeling ok until all this!

Thanks again xxxxx

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in reply to: Worried – low heart rate #1068990

Hi Girls,

Ok I called NHS 24 which is probably similar to what you were talking about EWMB. The nurse isn’t overly concerned but because of the op and from her reading my notes I am not your "typical" thyroid patient (didn’t want to say well you haven’t been on NFGD lol) she is getting a doctor to call me back. This is something we are not used to in the UK but because of swine flu they must have medics manning the phones too …oh the come downs eh? ” title=”Wink” /> She did notice I am short of breath when I try to speak and I explained its been like that for a few days now. ” title=”Sad” /> So I am just waiting on a call back.

Runlacie I am not on beta blockers because of my asthma. You are a runner aren’t you? So 60 is about a normal heart rate for someone who is fit believe me I do not come into that catergory ” title=”Very Happy” /> Is 30 ok for you?

Yeah I think I am going hypo and I am really scared. I didn’t expect this at all and am now worried I will be the extreme of hypo and go into a coma. I mean where has all this come from? I am really scared I didn’t expect all this and I know I have to reassure myself that you guys have all been there and I am not some precious patient of GD but I am so nervous. The nurse didn’t think the diazepam should be slowing my heart rate down as I have been on them for quite some time now. Also I mentioned my brother has got swine flu but she reassured me that as long as I haven’t been in direct contact with him I should be fine.

Her concerns are more for my breathing and the possibility of an underlying chest infection rather than my heart rate – go figure. Oh I wish you guys were with me right now. My hubby is here and being great but I know you guys understand it more so.

Will keep you updated after doc calls..

M xxx

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in reply to: graves and drug abuse #1069034

HI Chesney,

Welcome! Firstly, can I just say the fact that you can come on here and be so honest shows how strong a person you and also that you are an honest person. I am sorry to hear that you have had drug abuse issues in the past. Do you receive continued support for that?

I hear what you are saying with regards to the possibility of an earlier diagnosis may have prevented relapses- doubt you will ever know for sure. I heard from a very wise person once that forgiveness in any form can be hard but the hardest person to forgive is yourself.

I have a great endo who is very empathetic and recognises how mood is altered in this condition and complete personality changes happen. I was one of them ” title=”Wink” /> He told me that at one stage when I had the TS that I would have gotten off for murder my levels were so bad I wasn’t in control of myself – that obviously doesn’t account for everyone but he was demonstrating YES I was going off my head but it was all due to physical hormones.

The main thing is you have been diagnosed…..You are on treatment (?) and you have us to help you through. Please free to share your stories as someone pointed out sometimes its not always graves related but more how people are struggling with life while feeling so ill.

mx

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in reply to: Surgery scheduled for 8/18 :D #1069097

Hey – congrats! Wooohooo!

Remind me again are you a single mum? I was in hospital for 4 days. BUT I haven’t been able to lift for 2 weeks so if you have 2 little ones then you are def going to need help. I hired a cleaning lady – actually a family friend who has her own cleaning company to come in while I was in hospital (not going to go into the whole hubby issue) and for her to come in once a fortnight and do a good clean, if you want the truth I couldn’t afford once a week ” title=”Wink” /> and I knew that I could start to potter about eventually around the house and my hubby would hoover daily SO that was me thinking practically as a mum.

I made sure I got to do as much to get organised before I went into the hospital – I made homemade soup and put it in the freezer etc… filled the cupboards/ changed the beds/cleaned under the beds the lot as I knew otherwise I would be harassed when I came home and basically it wouldn’t get done.

I don’t know how long they keep you in hospital in the states but I read that someone on here was home the next day – which I think is complete madness :roll Hopeful that is amazing your nursring friend is back at work after 8 days. I wouldn’t be insured over here for moving and handling in the UK at 8 days post op my surgeon has told me 4-6 weeks because of the nature of my job etc… Its amazing how different countries work isn’t it interesting? To be honest I still can’t drive and that is me16 days post op. I am lifting infrequently and when I lifted the baby again today I felt my stitches tightening so had to put him down ( internal stitching).

So glad you have a date! keep us posted ! xxx

I hope you get plenty of help. The one thing I wasn’t prepared for was the slump in mood I sincerely hope that doesn’t happen to you but if so you are not alone!

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in reply to: Another new person. #1069048

Hi M,

Welcome! Gosh you have been trough the mill. That must be so annoying that after all that surgery they left some thyroid in! I have just had a TT myself and was in theatre longer than expected due to the size my gland but nothing like 10 hours – gosh that is awful long – heart surgeries don’t even take that long! When you say pants do you mean as in trousers? I know I wore my underwear in surgery lol and actually they encourage female patients to do so now in the UK lol! ” title=”Wink” />

Sorry to hear about your eye problems that must be so frustrating after everything you have been through and at such a young age. I don’t know too much about TED but I do know that there are lots of people on here who do! Do you think you are still symptomatic hence the reasons for restlessness etc..? How long ago was your op? I know that my sis who had the op about 13 years ago – they left 1/4 of her gland and she now has re-growth which has resulted in a large goiter again ” title=”Sad” /> At that time in the UK they only offered para’s but now its only TT for thyroid patients so I guess I am blessed in that respect.

I know you know already how important it is to take your meds regularly so I won’t preach ” title=”Very Happy” />

There are many of us on here who have had a right rubbish time of it, myself included, who are more than happy to listen and support you. These people are the most supportive and caring bunch you will ever come across. Your post made perfect sense. Gosh I look back at some of mine and I was just on for a rant to get out what I can’t express to other people.
In the meantime take lots of care xxxx

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in reply to: chest pain after being diagnosed with GD? #1069056

Hi,

Ok I think this may be 2 seperate issues here either biomechanical or cardio. With GD yes I have had chest pain / angina type pains and also those little sharp pains you get at your chest while aneamia is a problem. After the TS I had terrible chest pain, shoulder tip pain (which I knew was an indication of possible heart attack), jaw pain (same as before) and tightening and tingling of my left arm. I had several ECG’s in the hospital that showed a definite tachycardia but my rhythm was normal. When I had to go to see my GP a few afterward I mentioned the chest pain and she said it was symptomatic of tachycardia which has been running for a long time. Now she did advise me if it started to worsen etc… just go straight to A&E or call 999. They weren’ t overly concerned because the rhythm was ok.

It does sound as though yours is muscular/connective joint pain just by the fact that you are sore when you take your bra off. As I am sure you are aware the sternum is a difficult bone to treat – like the the clavicle joint and pelvis – but boy can it be very painful ” title=”Sad” /> I haven’t had joint problems in my chest with GD but I do know as a chronic asthmatic and as a young child with recurrent chest infections I would be in agony around my sternum because of all the coughing etc…

I think with any form of chest pain it is always best to be safe that sorry as you never know if its referred pain. A simple ECG which only take a few seconds can rule out anything less worrying.

http://www.netdoctor.co.uk/diseases/fac … dritis.htm I looked up this link for you to have a wee read and see what you think should be your next course of plan. If it was me I would get an ECG. In the meantime it would probably be best to wear a sports bra to bed to give your sternum some extra support and try and hold the area if you cough or sneeze.

I hope you get it sorted soon and get some pain relief in the meantime.

xx

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in reply to: Ultrasound & Pregnancy #1069038

Hi KMm,

Firstly congratulations! With my last pregnancy – youngest now 8 months I had 14/15 scans (can’t remember exactly). I was advised even after my recent thyroidectomy that I would require the same level of care as I am now on thyroxine and still have GD therefore they need to check the baby’s growth.

To be honest there aren’t any reasons why ultrasound would harm your baby otherwise they wouldn’t be allowed to perform so many in the one pregnancy. I found it very reassuring due to previous losses and was so thankful that my bloods would be monitored extra regularly.

HTH

xxx

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in reply to: Synthroid or Anxiety ???? #1069087

Hi Hopeful,

I know you are very anxious at having to take thyroxine. However, I think I did mention to you when I was unwell with anxiety/depression in my final year at uni I would be driving and realise I was clenching my jaw and at night would be lying in bed doing the same and also my fists would be clenched.

I know that its been a long trial for you with the RAI and you are afraid of the thyroxine side effects but believe me and I genuinely believe that most people on here agree that I am happier to be on thyroxine than the ATD’s.

Even after having agranulocytosis, I would be cautious about any feelings I had or things like i posted on here – bruising over my legs/mouth ulcers covering tonsils. Its normal to be feeling anxious…..however, try and trust your endo and if your GP is backing him up then please try to breathe deeply and believe them. If you google "stress" jaw clenching is one of the top physical side effects.

Could you listen to some relaxation CD’s to try and "learn’ how to relax? I used a lot relaxation techniques and snoozeleen effects with patients with respiratory conditions/Stroke and even patients whose anxiety was so bad I couldn’t rehab them for them ready to pass out with nerves. So I would take them into the OT relaxation room , low lighting, comfy chairs, relaxation CD which teaches people how to learn to try and relax – similar to yoga breathing etc.. Can you get one of your friends to use some hand cream and give you a lovely hand massage or even better yet a good should massage and rub before bed. I lived in uni dorms and in our flat were a group of OT and physio students. The physio students were just great and they got to practice their techniques out on us – it was a hardship but we endured to help them out
Or if not try and even book in for a massage and facial. I did that alot when I was coming out of my breakdown – Indian head massage / shiatsu are fab and so relaxing.

I hope your start to feel more settled soon. I am always here for you if you need a chat as I know how bad anxiety and panic can be (((((HUGS))))

xx

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in reply to: Hi, everyone! I’m the new facilitator. #1069059

Hi Ellen,

Welcome aboard! You are very welcome. We look forward to hearing from you xxx

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in reply to: Hey GD family – I’m feeling better :) #1069094

Thanks everyone!

Hopeful, so far I feel ok on thyroxine – my hands were slightly puffy the other day and I had to take my wedding band off but other than that I don’t know if its too early to say. I think I mentioned before I was on thyroxine with a combination of carbimazole and I am sure it was a high dose and I felt fine. PTU was the one med which I didn’t feel great on..

Mxxxx

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in reply to: Facebook #1069078

Hey Cathy I am already a member! Haven’t really written anything on there as this is more intimate ” title=”Wink” /> There are a few of us who have actually made friends on facebook since meeting on here! Its amazing once you start to get to "know" someone on FB and see their family like etc.. how much more you care for them and are looking out for their best interests.

x

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in reply to: recently diagnosed with graves #1069120

Hi Welcome!!

You will receive a great deal of info and importantly so much support from what has grown to be a family on this forum. We are all here for you good days and bad.

Firstly, GD is an autoimmune disease so it lies dormant and it can take a trigger to set it off for me it was pregnancy others don’t know why it takes off. There are some great explanations in the archives so don’t want to repeat all that and bore you! The way I have been led to believe and through experience it doesn’t matter how early on they catch your condition it can progress in many ways. It took a year for me to be diagnosed 1st time around mostly due to a neglectful GP and my having "typical woman syndrome" that i just thought well this is how you feel when you are a mum I was on treatment for over 2 years – both carbimazole and then a combination called blocking treatment – which I felt awful on. I went on to PTU when I fell pregnant the first time around after diagnosis. While pregnant with my youngest my levels stabilised (as they mostly do during pregnancy) and I came off all meds. However, afterwards I became very ill and it took 8 months for my bloods to be stabilised to be able to have the op- even before the op my bloods started to go off again – which was confirmation for me that the ATD’s could no longer control my condition. Now inplace of being hyper I am now hypo- a condition I feel more personally happy with after all the events which took place post-partum. It doesn’t mean I am cured but it has settled alot of symptoms from hyper state which were becoming unbearable.

I do believe some people on here have reached remission – mamabear- who has a wealth of knowledge. I sadly never reached that stage.

It really is a numbers game and trying to find the correct dose of medication for you that may keep you stable for a short while and then for no apparent reason can go off again. To be honest the thought of surgery or RAI 4 years ago brought me out in cold sweats and I was petrified. Now I wish after my diagnosis I had just had the op or RAI. RAI option appears to be offered very early on at diagnosis in the USA unlike in the UK it isn’t really mentioned unless levels are struggling to be maintained.

You will find you will receive alot of replies from people with different experiences and it is through them that you may find your choice easier to make.

With regards to aspartame being the main cause for this condition – its not something I believe myself but then again I haven’t read too much into that side of it.

HTH

In the meantime take lots of care and lean on us thats we are all here for!

xx

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in reply to: Generic Ingredient that might cause allergy #1069191

Have you considered short term cortisone cream from your GP to clear it up quickly? Or aqua cream? xx

[hyperm]

in reply to: Exercise? #1069101

Hi,

Are you hyper/hypo? How is your resting heart rate? I was a keep fit fanatic now I am fanatical about avoiding exercise

On a serious note I too was advised to refrain from any form of exercise which increased my cardiac output… gentle walking was my advice. To be honest I felt so ill and tired that I don’t think I could have exercised anyway and even climbing the stairs was done with a sit down half way to catch my breath and slow my heart rate down some days. You have to be careful of tachycardia as its not just an increased heart rate that will slow down after a few mins sometimes the heart then works itself right up into a faster paced rhythm and in many cases it can days for it to settle.

Its true that exercise can improve your mood but until your heart rate and BP etc.. are stable then doctors orders should be followed if you were asking my opinion.

Sorry its not much help with regards to how you are feeling but I always think its best to err on the side of caution.

I was even told not to exercise when I had a low ferratin count of 4.

HTH
xx

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