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in reply to: Very weird dreams since ive been on synthroid. #1069332

After having the most bizzare dream last night I remembered this thread and wondered how everyone was sleeping these days.

I had a dream last night that my surgeon scanned my neck and noticed 2 big pieces of my thyroid remaining she said it was a "Carry Grant" effect Like where on earth did that come from? anyway I woke up crying as she went onto to say if you don’t have the operation then you may only live a year… I think this part stemmed from me seeing an ambulance with the blue light on yesterday and I still have flashbacks of being taken away in an ambulance with the TS… Its weird how the mind works isn’t it? But going back to plain weird why on earth would I make up a "carry grant effect"

M xxx

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in reply to: 10 days on Methimazole and Feeling Worse? #1067158

Better days are ahead. It does take time but you will eventually start to feel the benefit. It may even be so gradual that you don’t notice it initially. Hope the RAI goes ahead xxx

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in reply to: Weigh-in (just for fun) #1068796

Hi girls,

Sounds as though most of you are really doing well and maintaining the weight ” title=”Very Happy” /> ” title=”Very Happy” />

I am devastated by the weight gain on my part – I am now up to 11st 13lbs. Nothing is fitting clothes wise and I am really trying to walk whenever I can and cut back. My TSH was 32.1 at last blood result and I am on 150mcg thyroxine. However, my hair is falling out rapidly now and with the weight gain I gather the meds are perhaps not high enough. Starting to get worried now. I hadn’t weighed myself in a while as I have so much else going on with hypo symptoms that I thought it best not to be faced with a depressing result – sorry I haven’t been on here regularly.

Kimberly I am having problems with my eyes too.

lacie – congrats! I am going to get fit again…..one day.

M xxxxx

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in reply to: Orbital decompression for ‘cosmetic’ reasons #1067477

Hi,

I hope you don’t mind me jumping in, I am so confused about TED. I initally at the stage of diagnosis had watery/gritty eyes which settled down as my meds kicked in. MY surgeon (after TT) said that my eyes were one of the reasons I wasn’t offered RAI – it floored me as up until I had the op I never noticed anything. NOw my eye lids are very puffy, have large black bags under my eyes and my left lid has an extra layer and it feels as though I have a long fringe and the hair keeps getting caught behind the lid when it goes back if you know what I mean. Can I ask a few questions please:

1) has anyone had steriods as a form of treatment? If so what does it do to the eyes? What side effects did you have (weight gain, hair loss etc..)
2) If I leave my eyes like this will it get worse or can it settle down again once my bloods come into range
3) What can I do to help the puffiness/bags under my eyes
4) What happens in the surgery – will it prevent the eyes going like that again
5) what other options are out there
6) Can I go blind if I don’t get treatment on my eyes

I am so scared and like you said I get overwhelmed. Some days I can cope others I just break down and it frightens me as to what this disease can do to me.

Thanks so much xxxx

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in reply to: graves and adjuvanted vaccines (esp. H1N1) #1067546

Hi,

Have you had the vaccine yet? I was really worried about it and also gettimg my kids vaccinated – my youngest is asthmatic so is in the "high risk" bracket too. After speaking with my BIL who is a doctor who works in public health for the Japanese govt he reassured me that he was getting his family vaccinated – except his daughter who had a positive swab so wasn’t to get it. I am positive my 2 children have had swine flu, but because they stopped swabbing in my area for a while there is nothing documented therefore the dilemma of vaccinating was there.

I had my eldest vaccinated around 2 weeks ago- he was completely fine. I went a week later and was so ill and my arm is still up like a red egg ” title=”Confused” /> I felt so unwell after it that I have decided I am NOT going for my second dose and neither will my son be going.

Keep well everyone xxxxx

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in reply to: WBC low…what’s next? #1067257

Hi,

Sorry you are having such a hard time of it ” title=”Sad” /> Ok yes I have low WBC . I had been on carbimazole for 4 years then came off all meds while pregnant then as I went back onto carbimazole my WBC dropped significantly. It was a hard time for me as I had just gotten home from hospital after a thyroid storm and I got a call 2 days later to say stop immediately and get your bloods done in 2 weeks. Stay away from anyone who is ill and take care with your health a common cold could have made me very ill at that point apparantly. They were in a dilema as to what to do as I was still running very hyper after the storm.

When my WBC increased they changed my meds and put me onto PTU and highlighted I could never go onto carbimazole again. I had however agreed to go ahead with the TT after that. However, my endo highlighted it was the end of the road with ATD’s for me as my WBC kept dipping with PTU and also they were finding it hard to control my levels with the meds so much so in fact I was toxic at the time of surgery.

It really depends if you respond well on another medication however my endo did highlight that normally when this starts happening it can be a recurrent problem – however, thats not to say it will happen to you.

I would def ask your endo and they will keep an extra close eye on your bloods from now on.

M xxx

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in reply to: Lump at side of neck….related to TT surgery? #1067331

Hi all,

Well I never got to call the GP. However, the lump has went down a good wee bit and I took a cold a few days later so think it may have been related. Its not near my scar so knew it wasn’t scar tissue. It is nearer the back of my neck. I will keep a wee eye on it and if it doesn’t disappear completely in the next week or two then I will call my GP.

Thanks for all your help cxxx

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in reply to: Weigh-in (just for fun) #1068792

Hey was just looking for that thread to give an update ” title=”Smile” /> It has went down. It wasn’t near my scar so it wasn’t scar tissue. I think it may have been a gland as i took a cold a few days later..so maybe its been to do with that. Its still there but not as large. I never called my GP as my both parents have been unwell and my dad had to get a doctor into the house (uncalled of in the UK unless you are loosing a limb ” title=”Very Happy” /> ) so I forgot about it.

Thanks so much for thinking of me. xxxx

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in reply to: Recent Thyroidectomy, What should I expect now? #1067280

Michelle,

Firstly, you are NOT moaning. You are however, human and still recovering from being unwell and a major op. I too have to keep reminding myself that I was very unwell before the op for a long time. My sister was great after her op and bringing my mum breakfast in bed etc. the day after her discharge. I couldn’t even straighten my neck etc.. never mind make breakfast. She hadn’t been ill before her surgery it was more to do with a large goiter.

I had a TT too, they don’t offer partial in the UK for hyper patients anymore. I am sorry that your scar is larger than expected. I have been lucky that mine is rather small about 3 incnes long – however my surgeon is known for neatness so I was lucky. However, just keep remembering the scar will fade..

You are not ungrateful at all. I often feel like that but its the reality of the situation on top of life going on as normal with all its stresses. Its great people are trying to be positive for you but there has to be an element of reality in there too or else you are setting yourself up for a large thud! ” title=”Smile” />

My mum said to me today – "you know today is the 1st day I have looked at you and not felt my stomach tighten with worry at how unwell you looked" she sees a change in me! YEAH!!! It has taken a long time for her to say that to me so it must be true. I am back at work but it took me 3 months to get back to work and even then I thought I had returned too soon. Like you say people are not really interested. So I think ok I am not going to say anything to them and just do what I can do. My dad a few weeks after the op made a comment about how my sister recovered quicker than me. My mum and hubby were great in saying diplomatically that my sis hadn’t had a thyroid storm and neither did she have 2 children – one a very young baby to cope with. Also her levels stablised very quickly intially.

We are all different and as ewmb stated GD really plays with the mind. We are in a similar situation as my husband was paid off his job so its so stressful and worrying BUT i need to stay focused at times or else my health will get effected again.

I would get so frustrated when people would tell me so gently and caring that it was early days and I need to give it time. They were 100% correct. Please try to keep posting and reading others stories it will give you strength. We all understand what this disease does to you and even though you don’t have a thyroid you still have GD so now I am at the extreme of hypo (which a lot of friends were like eh???).

With regards to the phlegm I had that too – it was like you needed to cough for a while, but you can’t. I had physio after the surgery (am also a chronic asthmatic) so I knew that i had to do some "huffs’ very gently to try and bring it up otherwise it had to stay there to the next time not nice I know. It did settle down after a few weeks. Try to keep eating though its most likely your throat is sore because of the scope they put down to keep your trachea open while they were operating – its very common you may even notice small traces of pink blood when you cough due to the scope going down and tearing at small vessels.

Sorry I have went on a tad – but I just want to reach you and tell you that someone really does understand and better times are ahead healthwise although be it for both of us a slower recovery than most.

Lots of love xxxx

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in reply to: Weigh-in (just for fun) #1068790

Hey ladies sorry I haven’t been posting. I am just on and off at the moment.

UGh I am now sitting with a TSH of 32.1 so I am now piling on the pounds. I am very disheartened and really hope no more goes on and that I will come into range and it will fall off. But what if my metabolism stays like this and I can’t burn it off.

lacie I hope you are not hyper again – you have had a terrible time of it.

Good luck ladies. glad to hear you are doing well. xxxx

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in reply to: Help! Losing my hair!!! #1067409

Jollie, Thats very reassuring to hear as I washed my hair this morning and thought this has been going on for nearly a year with a short spell of reprieve of 3 months perhaps.

Do you take the omeaga 3 fatty oils rather than use a solution in your hair made out of them?
xxx

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in reply to: Recent Thyroidectomy, What should I expect now? #1067277

Hi Michelle,

I had my thyroidectomy at the end of July. My voice took a long time to come back – and even now I can’t sing in tune or laugh or cry that I don’t sound like Marge Simpson’s sister. Its very early days you need to give yourself time. I did find it hard to eat solid foods initially and its a weird feeling isn’t it? Like something hollow going on in there. I did try to ensure I chewed my food properly, but you need to make sure you are eating solids rather than puree so your throat doesn’t relax.

I know what you mean about people thinking you should be better. I got a text from my best friend a week after surgery saying "Great you all fixed now? When we going out?" Ehm hello???? Like it was only the start of my road of going hypo. Everyone heals differently. You sound like me a couple of weeks after the op and some one very wise and caring on here told me its most likely hypo blues. I felt very low after having been aggitated with being hyper. With regards to diet I tried to eat healthy to try and get my strength back up.

So now they will monitor you to see how your body responds to going hypo. Some of my initial symptoms were – low mood, feeling the cold, sore limbs, hair loss (again after the hyper hair loss scenario) and yes the dreaded weight gain. However, I no longer had a thyroid that was making me feel so ill. So although I am now very hypo and they are keeping a close eye on my bloods – its a different (dare I say more managable) type of tiredness. Its very early days and you need to try and settle yourself and give your body time to adjust to having had major surgery, allowing it to recover from the aneasthetic and adjust to having no thyroid.

I know I would often panic that my thyroid wasn’t there. I know that sounds weird but it scared me. Then I would feel a kind of grief that it wasn’t there- bizarre I know!

Even with all my current battles (many people I know didn’t have any of this and hopefully you are a lucky one ” title=”Wink” /> ) I know it was the only decision as I was so ill and like you the meds weren’t doing anything for me. I have a nice steady heartbeat now.

With regards to your neck. Its not nice to look at a scar. But mine is coming along nicely now and when I see it I now think – wow you brave girl – well done you! It will settle – give it time.

I certainly don’t feel fixed either which you can see if you read my posts, but there is a marked improvement in other respects. My GP was great with me as she said you need to take everything seperately. 1) you are by the really dangerous hyper stage you were in, 2) you came through surgery 3) even if your voice doesn’t come back ( as said had probs) then you are here with your boys, which was your main concern 4) we can deal with hypo easier than hyper.

The thyroxine takes roughly 8 weeks to have an effect. You are just after major surgery and need to allow your body time to recover. Eat healthily and rest when possible.

Feel free to PM.

Well done you for being so brave! xxxx

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in reply to: Help! Losing my hair!!! #1067406

Me too! Its horrible isn’t it? When I was hyper after the TS my hair was coming in lumps – almost like a babies of head of hair! Then it settled down and my hair (I had thick curly hair) started to come in and in good condition. Then I had the op and went very hypo with a TSH now of 32. My hair is falling out rapidly again. SO much so that when I wash it the plug clogs up and then when I brush it after washing (gently I hasten to add) there is a large ball coming off the brush after I clean it ” title=”Sad” /> I find it very distressing.

My colleague said today that she noticed my hair was no longer curly – I said its completely flat and lifeless.

Lets hope it all settles down for us all soon xxx

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in reply to: Feet extremely sore! #1067323

Hi,

I had sore feet and hands when I was on the blocking tratment and since I started back on thyroxine post op my feet and hands are in agony. Infact I can only wear flat soled shoes. I also had a lot of swelling afew years back (have it on and off now) so much so that I couldn’t get certain shoes on including trainers (sneakers). Def mention it to your endo.
it is most likely a flare up of your RA too.

Hope you start to feel better soonxxx

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in reply to: Overwhelmed #1067370

HI all,

Ski I think you are right that reality is settling in with regards to there is no greener grass lol.

Bobbi I can appreciate what you are saying and the importance ofnutrition is so true but for me no life is not good at the moment having Graves in fact it is down right awful! I have 2 small children who need an active mother who can care for them and not always be pushing through the day with fatigue and ill health. Its very depressing even for me who is normally a get up and go sort of person. I think thats when you know the difference between those (like my sister and neighbour) who are fairing better with GD post op and those who are having a real battle with TSH levels and TED etc… My sister is completely baffled by my recovery compared to hers and my neighbour is the same. They were feeling great after the op and had nothing like what is happening with my TSH, hair loss, eyes etc.. So they can say well yes life is good with Graves because they feel relatively well. I have had 4 years of illness with 2 being really bad and the last year being life threatening and toxic at the time or surgery etc… I agree that a positive attitude is very important but I think acceptance has to come into play and with the grief for what was and what may have been to a respect. Otherwise I laugh with my children I get excited about Christmas etc… but it drains me as I don’t have the physical strength to back it all up and like ewmb states you have one good day and are knocked out the next. Thanks for your reply they are always really informative ” title=”Smile” />

ewmb I can appreciate what you are saying with regards to over doing it. I am back at work and to be honest I am taking panic attacks etc and can feel my joints all sore and very fatigued. I am only working 2 days but I think I am pushing to manage those days and then am recovering the rest of the week – gosh what are we like eh? Yeah I have heard of SAD thats a shame about your relative.. My job is community based so I am out and about although in the UK I doubt there is much sun. The GPs over here aren’t keen on testing for Vit D etc… downfall of the NHS i’m afraid. I have been walking my eldest to nursery and I kid you not pushing the buggy and walking up hill with him at my side is a real killer my legs just want to fold under me

I am just taking deep breaths and trying to stay focused… I am through the worst with regards to being hyper is concerned – that is a goner HURRAYYYYY! Now I just need to try and stay focused but boy is it draining to be made aware constantly by your own body about your limitations..

Oh well onwards and upwards xxxxxx

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