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It is rather frightening. 2 people close by to us are critically ill with it.
Good hand washing is always the way however if its airborne then there is little that can be done. Recent UK research of alcohol hand wash has found that it does very little to sanatise your hands and most often results in skin irritation which then increases the risk of infection……not great when you work in comm rehab with patients with MRSA
” title=”Sad” /> Keep well everyone
M x
Hi Emily,
I can sympathise completely…. I have asked the same question of many occassion over the last 4 years. 3 years ago I used to take "turns" where I could be lying sleeping and wake up taking one. It was as though my whole body started to shake and as though my bladder was just going to give -I would try to get to the toilet and would fall in the hall…..they became so frequent that my hubby used to check I was ok and run downstairs to get 2 hot water bottles and a cup of tea with sugar and a warm blanket and would then have to sit with me until it passed. It was basically chronic fatigue my GP said. Adrenal burn out is a horrible thing so try and be easy on yourself.
” title=”Wink” /> It will get better and yet as you say there will be bad days. Everyone has bad days and I guess people with our condition just have them more so. I can appreciate when people try to be really positive and thats a great support but sometimes I find it doesn’t help and you just want to hear that other people have or are going through the same and are still here to tell the tale.
Just now I hardly get over the door except to drop my little boy at nursery and perhaps a drive in the car with my mum… I have had to learn to accept this just now- its not easy some days are better than others. The other day I was putting away washing and it was such an effort I had to sit down on the bed and I got really frustrated like you are just now and thought I am fed up with everything being an uphill struggle.
We will get through it with the help of God and each other.
A priest gave a lovely homily yesterday: He had an email and its title was "I am where God wants me" it was about 3 men who on their way to work got held up and were late; one dropping his daughter off at school, one who stopped to buy new shoes and got held up in a queue and another (i think) in traffic. Anyway, it turned out that if they had been on time for work they would have been in the world trade centre on the day of 9/11….
It really helped me as I thought well I wanted to be at home with my kids and all though I am not a very energetic mum at the moment I am there for them and not having to rush out to work to make ends meat like some poor souls – it made me thankful.Hang in there Emily and let us carry you through the rough days and celebrate with you on the good ones!
Lots of love and cyber get well vibes((((((((((())))))))))
” title=”Smile” /> M x
mammabear – I love it – "curb him" thats my new expression now!
Absolutely right! If I hadn’t worked with the endo I had been seeing at the beginning then I would most definitely have curbed him!
Infact he was very lucky he didn’t see me after the TS or I may done more than that!However, as you say mamma bear I have changed also when it comes to medical professionals and I am one myself! After my little boy I bled for 11 weeks and was going off my head – it wasn’t a period. I was in hospital 4 times for investigations etc.. anyway you mums out there will know that the last thing you want after giving birth is an internal. On the 4th occassion a very rude female dr asked why "she" (that was me
) crying? The midwife answered because "she" has been in 4 times with the same problems. Anyway she had a student with her and said oh i’m going to do an internal to show my student. I just turned around and said "NO! you have done several in the last few weeks and I am not having any more – I’ve had enough I want a scan!" Her attitude towards me changed in an instant! ” title=”Wink” /> Amanda you need to be diplomatic but make a stand some doctors think they are God’s gift whereas in fact they are lucky they just passed a few exams!
hang in there!
M x
Hi Amanda,
Firstly, welcome! If you look at the numerous new members I think you will see a similarity in how you are feeling- the rest of us who have been diagnosed a while ago will all most likely tell you that we all felt the same too. I was petrified and daunted. So deep breath and try to relax.
Your endo sounds like my first endo – how do I put it diplomatically? – Rubbish!
” title=”Wink” /> I changed endo’s and what a huge difference. I would have to agree with Ski that his response isn’t exactly reassuring – is it possible to ask to change endo’s? You have that right.I think you are right in what you are saying about trying to study and being scared of whats ahead. GD can make you feel completely washed out and lathargic. I know alot of people who have had RAI – 2 personal friends and I must say they are fairing better than me.
” title=”Smile” /> It is a very scary thought and to add to that is trying to cope with a new diagnosis. What was the problem with ATD? To be honest with you I haven’t had RAI but I think that if I had been offered this treatment a few years back, in hindsight I would have taken it. I know I felt tired and not particularly great being hypo but it wasn’t as bad as my hyper states.Hang in there – try to think practically…if i had changed endo’s sooner I would have been in a better position at a time where my health was very poor and like you I was trying to work (part-time) and care for my first little boy. First course of action try and find out how you can change endo’s. if you are not sure why you have been taken of the ATD then find out – I had a problem with low WBC on carbimazole and they changed me to PTU.
You will great support on here, Ski and Dianne have a fantastic knowledge as well as personal experiences of this condition. Hang in there and keep posting we are all here to help.
M xx
Hi,
I can imagine as a mother myself when you hear anything is wrong with your kids you go into overdrive – its only natural. I was diagnosed at 24 but my sister was diagnosed at 13 and it was worrying for my parents and then when she when in for the op they were worried too. However, she has had a better prognosis than me in all her years of treatment compared to my 4 years.
So deep breath! The internet is a very dangerous thing….the information is very conflicting and also not always written by the professionals. As everyone has pointed out the main issue is that she has been diagnosed and will now have regular blood checks etc.. The endos are aware of all the dangers and know the signs to look out for.
If you look at Emily’s post a while back- we are both similar in nature when it comes to anxiety. So yes when I was first diagnosed (even though my sis had this disease for years) I cried with fear and when I was given a piece of paper with Thyroid storm warning signs I sobbed! Then I read up on the meds and sobbed more! its very frightening and as a mother I can imagine how you are feeling.
You know your daughter so you will be aware when you think things are just not looking right. I had a thyroid storm and for weeks before it I felt awful. My mum repeatedly said to my hubby and my dad "Something is just not right… I don’t like what I am seeing" Even before I was diagnosed 4 years ago she was saying something similar to my aunt. I am 28 but I am still her little girl and her instincts were spot on.
My little boy is 4 and very intuitive he was present when I collapsed at my parents home and it deeply upset him so the best way we could explain how mummy was unwell was that her throat was sick then he stunned us all by saying "is it your thyroid playing up mummy?"
I asked my mum how they explained to my sister and basically they just kept it simple and didn’t mention any of the threatening things… They basically explained that was why she was as tired. anxious and wow was she moody with a terrible temper. she is a twin and her twin was excelling at school whereas she was really struggling and my parents had to get extra tuition for her etc.. they were then able to explain that the GD was probably contributing to her lack of concentration and also poor eyesight. After speaking to my mum and explaining your situation that was her advice, keep it simple and you and your husband can be informed and look out for any complications – baring in mind that it is a low percentage of people who experience any of the threatening complications. Most patients are symptomatic and feel lowsy but eventually the meds kick in and all that settles down.
Hang in there!
M x
” title=”Wink” />Hi,
welcome!
I would have to agree with Ski WBC suppression is rare. I was on carbimazole for 4 years and was fine then post partum had suppressed WBC – its still tinkering on the low to normal range so am awaiting the op as there is little they can do for me. I, like you work in an environment (healthcare) where suppressed immunity would be a concern. However, as my endo reassured me at the start of my treatment 4 years ago – it doesn’t happen over night and as they are checking your blood they will keep an eye on it.
They were fantastic with me and I had my bloods done every 2 weeks – was off meds for a while and now back on them with regular FBC checks.
See how you feel. It is very overwhelming to be diagnosed with this condition and then read up on the meds/ treatments etc….
Hang in there and lean on us!
” title=”Wink” /> M x
"RNFQueen" wrote:I want to thank all of you for your responses.""Hyperm, I have definitely considered taking him with me on one of my appointments. I don’t know how much help that will be, though. My daughter has asthma and he has gone off on his speech of "doctors diagnosing every kid with asthma" even after leaving an appointment with her. I have had some board users forward me web sites that have articles for family members that I will be sharing with him today, so maybe that will help."""
Hey, I know what you mean regarding an increase in diagnosis of asthma – however, these are diagnosis which in turn are brought under a general term. My GP agreed that although my eldest little one is one inhalers at the moment it is most likely he will grow out of his asthma whereas I am chronic asthmatic and have had some really scary asthma attacks which resulted in ventilation etc.. however my sis also seems to have been diagnosed yet smokes and takes her inhaler in between puffs
” title=”Smile” /> 
” title=”Neutral” /> but has only ever presented as "chesty coughs on occassion". However, with GD there is blood work for proof and your endo (hopefully a good one like mine) would be able to explain to your hubby why you are feeling the way you are.My endo told my hubby that he had a patient who murdered her husband and is now in a state prison – he admits that there were social reasons in the background but when she was referred to him her levels were raging… He also told me (I have said this on here before) that my levels were so bad that if I had commited murder in that time I would have gotten off with it as he put it "yes you were going off your flipping head, your levels were in orbit!".
It may or may not help your situation but its worth a try….we could even start a thread on here for partners? Then maybe he would be able to read about other patients / couples etc…
I really feel for you.We are all here to support you
Hi just wanted to add to Dianne’s post. My MIL is a food specialist and as you all know she was over for a while (it actually all started to settle down and she was a great help = think I was too uptight at the beginning
) anyway she told me not to eat any seaweed (which I was aware of) as its basically like sea kelp which isn’t good for hyperthyroidism also to stay away from soya products etc…My feeling most of the time is that well if you are going to be taking a pill – its best to be the right meds rather than a lot of herbal mixtures which don’t have any scientific proof for helping our disease.
I don’t want to rile anyone but I get really worried when I hear people coming off meds after I experienced the most frightening experience of my life with the TS -I have went through child birth twice so thats saying something!
m x
