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in reply to: Worry about cold/sore throat? #1071863

Hi Emily,

Ok here I go again! I have had problems with both carbimazole and PTU with low WBC – yes just my luck ! After being on carbimazole for 4 years with no problems I had the TS then was called from the hosptial to say STOP the meds your WBC is very low – any lower and they were taking me in for barrier nursing. Please try not to worry as they told me to get my bloods done in a fortnight and just stay away from people who are unwell – hard like you when you have kids etc…

I wasn’t allowed back on carbimazole so was told to start PTU however my WBC is hovering on the normal range and dipping sometimes so my endo told me he is relieved that the op is going to happen as there is nothing else they can do for me meds wise and long term they wouldn’t want my my WBC to be as low especially when I return to work.

So yes you sound like me in a lot of ways. I remember the first time I had to start the carbimazole and I read the attached leaflet etc.. about low WBC etc… and then stupidly (for me) I looked it all up on the internet and just went into floods of tears. Now my sis heard about this and called saying she had been on it for years and was fine and I was like you saying – yeah but I know my lucky! I got very cocky over the last few years but after the TS I said to my hubby I bet my WBC starts to lower – he was dumbfounded when I got the call from the hospital…..

So the moral of the story is…….try not to worry, if this happens they can deal with it and even in extreme cases they would hospitalise you – like they intended to do with me. If you are concerned call up and ask your endo secretary for your results. There is no harm and its your health.

I write this to you calmly – yet was out today at a church event and sat the full time taking my pulse! ” title=”Very Happy” />

Take care

M xxx

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in reply to: You have Graves. Ok. I get it. #1071872

Hi Lisa,

Firstly, yes I have had hair loss, muscle cramps and anything else which is in the text book under symptoms of GD – yep I had or still have them.

I am rather concerned however, that you haven’t been taking the meds and am not sure if any advice I give you will be what you are looking for. However, I have recently had a thyroid storm and therefore my advice would be that the endo is right in giving you the meds and after a life threatening experience I would take anything they gave me.

Many of the anti-thyroid meds have side effects (as do other meds and also herbal remedies too as I am sure you know). I have had problems with a very low WBC the last few months – to the point where barrier nursing was perhaps going to be an option. However, my endo had to put me back on the meds as my thyroid levels were still very dangerous. I am going for the op soon.

I do believe that healthy eating will boost your health but with conditions like GD I think it is matter or taking prescribed medication. My hubby is Japanese and my BIL is a doc over there. He isn’t keen on the blocking treatment but even in Japan they treat this condition as very serious and treat it with thyroid meds.

Maybe it would be best to talk your options over with your endo and see if you can find other alternative meds or treatments.

Sorry not much help.
M x

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in reply to: Lack of Support #1071883

Hi Jody,

Sorry to hear of your situation. It seems sometimes most people don’t understand the condition and believe it only to involve weight loss or weight gain. Would it be helpful for him to accompany you to the endo and have him explain the symptoms of this condition.

I truly sympathise with you and I can assure you that there is great support on here for you..

Hang in there

M x

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in reply to: hair loss #1071938

Hey,
YES I had a massive hair loss. I actually posted on here at the time as I was frightened to wash my hair and when I did or brushed it even gently it was coming out in lumps. I was lucky to have thick hair to begin with. However, thankfully it eventually stopped and is back to a normal loss.

Yes my nails are so brittle too and that is a very common characteristic of the disease. My nails didn’t even get strong or grow in pregnancy which is unusual.

Please try to keep your daughter calm and I am sure you will get much reassurance on here. I was advised that once my levels started to become within range it would settle down. The only problem I have and have had since I was diagnosed 4 years ago is very dry hair – I have had numerous treatments at my hairdressers and try everything at home to no avail ” title=”Wink” />

lots of love to your daughter and her caring mum ” title=”Wink” />

M x

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in reply to: need help being patient #1071945

Hi Emily,

I think they could be right – it may be worth while to get it checked out. There is no harm and the A&E can do it on the spot and have your bloods done within an hour.

Please keep us posted.

M x

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in reply to: My Daughter’s Weight Gain #1072749

Hey,

I’m not sure and was so shocked and to be honest concerned about my baby that I never asked why. I’ll ask my BIL.

I had teary / gritty eyes for a while but it did settle down. Its such a shame for your daughter as being a teenager its not easy staying awake and the GD just makes you feel even worse.

Could you not ask for a GP cert to be attached to her file for the markers who score her results? My parents arranged that for my sis- I am sure you mentioned you were a teacher so probably know more about it than me. ” title=”Smile” />

Hope today proves to be a good one – I’m off to feed an almost 4 year old who won’t stop eating!!!!!

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in reply to: Feel lucky despite having Graves #1071947

HI Shirlee – You are one brave lady!

WElcome to the board and we are all here to help at any point!

M x

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in reply to: My Daughter’s Weight Gain #1072746

Hey I’m from the Uk too and I know what you mean regarding referral systems etc… however you ARE allowed to ask for a second opinion – I am a health professional and I know the ins and outs and you can ask to be seen by another consultant. The problem in the UK is that patients often feel that the power lies with the consultant – however, if you were to ask for a second opinion etc…. you will soon find that the power lies with you.

I challenged the endo I used to attend and worked with – one appointment he just wanted to ask why we refuse his referrals for rehab etc… I Was fuming as I feeling crap and he wasn’t interested. One day I just burst into tears as I was exhausted and he gave me a 5 min appointment and said right all is well and I just said "hold it" and then he put the onus on to me by saying "well you deal with it more than i do in your professsion so I think that we both know we are dealing with chronic fatigue here" and said go and get a 2 week sick line from your GP. When I changed endo’s and my current one (who is fantastic) told me I had been on the wrong med I was furious! I had been made to feel neurotic and as though I was lying about my diet etc…

So yes I would def recommend you question it and don’t mind at all you mentioning my case.

Hope all goes well.

mxx

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in reply to: Atrial Fibrillation and Graves #1075635

Hey ,

AF is horrible however more common than you would think. Nearly all my patients when I worked on the endo/diabetic ward had it in their past medical history…It is horrible I have had it myself… Not much help to you I am afraid ” title=”Sad” />

As ski said a month on meds is nothing, however the beta blockers should start to kick in sooner.
Lots of rest in the meantime.

m xxxx

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in reply to: My Daughter’s Weight Gain #1072744

HI Catsmum,

I was on block and replace for nearly a year and felt awful – even though my bloods were seemingly "normal" I had such bad fluid retention and the weight gain was heart breaking – I was on every diet under the sun. I had a very unsypmathetic endo whom I had worked on the wards with. Anyway, when I fell pregnant he referred me to a an endo/gyn specialist who he subsequently when to medical school with! When my new and current endo read the treatment I had been on he was shocked and asked "why on earth are you on that treatment?’ My hubby and I just looked at each and other and I replied that I had been on it for over a year. Subsequently my BIL from Japan had been calling every other week telling my hubby to demand I was taken off those meds… Anyway my current endo said that menstruating women shouldn’t be on block and replace – its suitable for post menopausal women or men but that I had been on the wrong treatment for over a year and had been overdosed too. I came off it and lost weight immediately and felt much better.

| am sure others have different opinions on this but I really trust my endo and everything he has said or done has been o f great benefit to me.

HTH

m xxx

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in reply to: Feeling better…Thanks:) #1071991

Fantastic news! Glad the symptoms are settling and you are feeling more like yourself.

Always encouraging to hear such good news!

M x

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in reply to: having a rubbish day need a wee bit support. #1072029

Gosh I feel as though I am such a moan.

Yes my MIL is aware of how ill I have been, my brother in law is a doctor in Japan and when he heard about the thyroid storm was concerned. She is a LOVELY person and very caring but they just have a different culture and some people just are not into housework i guess. I really tried to put her off coming over in a nice way as to be honest I didn’t want her to be feeling awkward because I am ill and my hubby and I are at each others necks some days. Our past encounters have went well although we both have different ideas of running a house etc… but that wasn’t an issue as we both got on so well.

I really don’t expect any help as I don’t even like my mum doing things as I feel well they are both getting older, its just that it really is adding to my daily tasks and I am not getting any more rest….. Anyhoo – was just having a crap day the other day and needed to vent, so thanks to everyone. I will just need to get on with it as the saying goes – no other option!

m x

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in reply to: having a rubbish day need a wee bit support. #1072027

Hey Dianne,

I can appreciate what you are saying and I suppose I really struggle to allow people to help. However, much as she is a lovely person they are not what you would term over here as "workers". Whereas when my sisters had their kids I had the bottles washed and on, washing in the machine/hanging out etc… and the olders kids fed and dressed for her getting up.

AS much as my MIL is a lovely person – this situation just isn’t working. I had a lie on this morning as the baby is teething and didn’t have a good night. So I awoke to neither child dressed at 10.30am – I leave their clothes out at night, there was washing sitting on the bottom stair, and the house like a tip. What really irritates me more is that my hubby just goes about trying to pretend he is "laid back" and I think he does it to rile me. Never once has she just taken the kids out for a walk or even helped to bath she just sits and watches! The last few days she has went up to rest – while I am rushing about the place and I know I look awful… Sometimes its not about delegation but just personalities. I mentioned to my hubby yesterday that as anticipated – this wasn’t working and as usual more work for me – he isn’t easy to live with and went about with a face like thunder for the rest of the day.

Anyway enough of my moans…thats just life for me!

M x

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in reply to: having a rubbish day need a wee bit support. #1072023

Emily,

Just noticed your post – sorry never mentioned you in the post – yeah I keep my downstairs tidy and therefore don’t break out in cold sweats or hide behind the couch if the front door goes!

God bless you Emily I hope you feel better soon.

Thanks Woodley too!

mx

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in reply to: having a rubbish day need a wee bit support. #1072022

Hi catsmum, You certainly have a lot on your shoulders!

You sound so like me at the moment but you have a wealth of knowledge. I offloaded to my mum – you know before this GD I never swore in my life now I use certain words venomously and – hey I feel great – then afterwards am ashamed. Anyway I never thought the day would come when I would swear in front of my mum – however she had a terrible menopause and like me never swore in her life so she is like – Get it out its ok!

I know what you mean about the little things – I am in the same situation, however I have a real anxiety thing about mess! I was one of 6 kids but my mum just seemed to be always organised even in her poor health. However, yes I admit I am anal and things must be a certain way..it drives me daft and you know what it takes up so much energy!

Ski – you are one of the funniest people on here – I think you and I have the same sense of humour! Yes I would be thinking — hmmmm the spoons are mixed in with the forks….will I be able to sleep tonight????

I feel so guilty as my MIL is a lovely person but both she and her son (who unfortunately happens to be my hubby ) are both so messy. I really struggle with my hubby at the best of times and now there are two of them!!! Anway, I have calmed down as I tidied up – made the dinner early and got the kids organised (or else it would still be needing done) and said right guys I’m too tired to eat now (but at least all is well on the Western front ) so everything is organised I am away to bed and when I awake will most likely just have dinner in bed….. The sleep helped…

Thanks again – I feel like such a moan but I feel I get so much support on here and that most of you are people I am beginning to know well through sharing experiences – so a huge thank you.

Lots of love

M x

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