Can we have a roll call - thyroid problems - sign in here

[ivykaty44]

Can we please have a roll call on thyroid problems of either type?

pretty please casue I know there will be a few of us on here

I should have said, anything you take into the room has to be incinerated after you leave, thats why I suggest taking some things to make you more comfortable.

For the underactive thyroid peops out there I posted on Jane Clarkes webchat for dietary advice which she replied to if anyone is interested;)
www.mumsnet.com/Talk/mumsnet_live_events/1141336-Live-webchat-with-nutritionist-Jane-Clarke-Tues-8-Feb-12-30pm-1-30pm-Tues?pg=3

I saw a clinical dietitian last week who said ignore any food fads that I am told that effect hyperthyroid or hypo symptoms. Though she promised to look at vitamin d research as there has been some discoveries with possible links with vit d being low and autoimmune diseases.

I wanted to know if the vit d is effecting the autoimmune system then would taking vit d help to go into remission

this is great thanks everyone for posting experiences good and bad. love the idea of showering 4 times a day - how luxurious (but remember my own towel!!)

No idea when i will be going in but after the summer holidays i think - so i'll be back..

sinclair best of luck with the rai treatment whenever you have it. Same to you eddie. :)

My friend said it wasn't too bad - just a bizarre experience. It was reassuring (and hilarious - she's a funny lady) to hear her talk about it. Great to have Libra and McGinger to give you the lowdown.

You all seem so knowledgeable about this area. I haven't a clue. Do any of you have recommended links to info about thyroxine and tsh levels, what levels are desirable etc,?

Officially I've now been signed off after partial thyroidectomy (to remove follicular adenoma) and told my levels are normal, but I'm so tired and getting increasingly so. I know I have 2 under 3 and work full time, but I am more tired than I should be, it doesn't feel normal.

My GP is going to do another set if bloods for me in a few weeks to see if my levels are still "normal", but given that I now have only one lobe I want them to pay attention to how I feel, not just numbers.

can you have a laptop? if you can have a tv and dvd would a laptop be permissable with a dongle for internet access?

Ivy - how did you get a referral to the dietician? Was it specifically for thyroid or some thing else?

ivy do you mean in the isolation room?

Anything you take in the room either has to stay in the room or be incinerated when you leave. Its too radioactive!

The room I was in had a TV and video and a load of video tapes that lived there. There were such things as DVDs then, they only had a VHS player though!

spidookly-I was also very much of the "well you have to laugh" variety. I lived on a diet of crisps and oranges in the hospital, which lead to my brother christening me Crispy Orange Woman, I was a super hero (obviously as all superheros are created through freak radioactive accidents) and I could shoot orange juice out my fingers, he even drew me a picture (I looked a bit like wonder woman in it!) which I stuck on the wall....but had to leave to be incinerated!

Yes Ginger - sorry I meant in the isolation room

blueberryboybaitonsafari

I came across this website

Then didn't want to self refer so asked my gp to refer me - she said it was over kill and I said I want support with my food intake for now, for when I return to sport which is important to me. I don't see why they can't be used as supportive.

I was telephoned last Monday about 3pm and asked if I wanted to take a cancelation for the following morning at 10am so did.
It was nice to be told I was doing ok with my food and intake and she gave me some advice for when I am able to return to the gym and session out on the roadbike.

I came up with some great flap jacks at the weekend with little sugar and no golden syrup so was pleased with those - they can go in my saddle bag

Thanks to everyone on this thread. I've found out more info from here than anywhere else!

My DD has congenital hypothyroidism. Picked up on heel prick she and had a TSH of over 800. She has a small piece of non-functioning lingual thyroid tissue so no thyroxine being produced. she is 18mo and on 75mg daily but is due to be tested next week.

will never forget the week she was diagnosed, but its all come good in the end, just have to keep an eye on her for low thyroxine symptoms.

There is a lot to know.. eddie, I now have a good picture of RAI

Who's had surgery and how did that go? please

I was diagnosed with hypothyroidism about 6 weeks ago.

Have started on 75mg Levothyoxine and will have a blood test next week to see how it's going. Will find out about antibodies when I next see my consultant.

It was found by accident when I was being investigated for other symptoms!

hi all, you all know loads. Do any of you with an underactive thyroid follow a diet thats helped you loose weight? Also some of you have said to take your tabs in the morning before food, does it make it work better? Soz for all the questions i was just given tablets and sent home

Hi Stac2011 I have hyper and not taking thyroxine, I have heard low gi is good and also eating enough and not skipping meals

hello wishiwasmoreorganised

Ivy - how much carb are you on? I am on PTU because I am BF my youngest. I have found that I am still suffering the increased appetite even though my levels are heading for the low end of the T3/T4 level and my TSH is 0.8. I am wondering if DD2 weans and I start carb the munchies will stop. That is why I asked about the dietician because it it could well be force of habit!

I had a good search around the internet about food and food portions etc. I found very little and was getting perturbed (then anxious as we do)

i found this about appetite - this

be back later

blueberry how long have you been bf? is it not possible that the increased appetite is due to the demands of bf? I know I was constantly ravenous when I was doing it and that was with stable levels on ptu. When I stopped bf at 6 months the appetite died too and I lost a silly amount of weight quite quickly

crumble
"is it not possible that the increased appetite is due to the demands of bf?"

Aaaaaaaahhhhhhh! :o

This is my big issue with "unexplained weight gain" at the moment.

I'm not putting on weight, but I feel like I'm really having to work hard not to iyswim.

But I'm bfing DD2(1) and I'm a fat breastfeeder, so my weight is affected by that. There is no way to tell whether I'm fatter than I should be because of bfing or low thyroxine.

Also, a few of you mentioned pins and needles in hands - I have this. In the hospital they said it was related to drop in ccalcium, although my calcium levels were fine. Will vit b12 fix it? Is it calcium or something else thyroid (rather than parathyroid) related?

McGinger LOL @ Crispy Orange Woman :o If we've learnt anything from Spiderman, it's that superheroes are born of radioactivity and random nearby objects. There is something quite poignant about your story - people really are amazing :)

Hi

Just spotted this thread and would like to ask for opinions.

I'm underactive and take 175mcg a day. I was dx about 3 years ago now. Long story but I went to see my doc after having a panic attack (thought I was dying!) he checked my BP which was sky high and sent me me off for a raft of tests. The one thing that came back from the bloods was I was seriously underactive (thyroid not me!) He said I'd probably been this way since childhood - apparently I have a lot of signs, even my Mum said as a kid I was always asleep but kids of the 70's didn't get tested for anything - in fact the blood tests the doc did were the first I'd ever had in my life.

Anyway, long story short - I was expecting my first child last year and was under the impression that you were supposed to immediately up your dose. Doc poo poo'd this, also never mentioned referring me to Endo specialist - sadly I lost little one (Mtop for medical reasons). I fell again at the end of last year and saw a different doc - she said to leave my Thyroxine as is (didn't bother sending me for a blood test) but I would probably need to see specialist.

When I finally got to see my midwife at 10 weeks, she said that all her ladies with thyroid issues had regular blood tests and were referred to see the Endo, in fact she was really angry this hadn't happened for me and phoned the docs to tell them to refer me. She even spoke to the testing people at the hospital to find out what forms she needed to complete to get my blood tests done (apparently thyroid wasn't listed on the forms she had).

Sadly that night I started to miscarry and lost this little one last weekend. My question is, do you think my thyroid could have been the cause?

I know I'm probably clutching at straws but I don't seem to have received the same treatment that others did.

Sods law, doc did refer me after an argument with the midwife and the hospital phoned me yesterday to make an appointment. I told them it was too late!

Debs - so sorry for your loss
When did you last have your levels checked?

They are supposed to up your T straight away
www.cks.nhs.uk/hypothyroidism#-482785 this is the nhs clinical guidance

debs3013, I am sorry for your loss this is heartbreaking for you

read the conclusion

this one maybe worth printing out and taking to your gp it is from the European journal of endocrinology so a reliable source

Thank you both - I think I will go and talk to the doc about this.

I had a bout of Erythema Nodosum late last year and had another raft of blood tests then, one of which was thyroid and I was just told all blood tests were fine. I have no idea what my levels actually are now.

It maybe help ful to print out the NHS sheet to say look I have found this, so looks like we will have to be prepared on my next pg to safe gaurd baby and me. You could ask to get your bloods checked then so you all know the starting point.