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Support thread for those with thyroid related disorders

(521 Posts)
yeghoulsandlittledevils Sun 20-Oct-13 16:08:56

This is a support thread for anyone who would like to ask any general questions about thyroid function or life with thyroid conditions (especially if you don't want to start a new thread) and also for any Mumsnetters who have been diagnosed with thyroid disorders (hypothyroidism, hyperthyroidism, Hashimotos and related conditions) to chat and support one another. Please come and be part of the growing Mumsnet thyroid support network.

BlackberrySeason Sun 20-Oct-13 16:15:10

Good idea! I have hypo - dx 2009. It's fairly well controlled now, but needs careful watching in pg and I'm TTC again now.

batterylow Sun 20-Oct-13 16:18:35

I am having blood tests Mon due to reynauds and some other vague symptoms like recurrent mouth ulcers. Wondering if I have something that affects my mood tbh as feel v up and down, particularly anxiety about what people think.

awaynboilyurheid Sun 20-Oct-13 16:30:10

yegthanks

yeghoulsandlittledevils Sun 20-Oct-13 16:31:30

Welcome Blackberry flowers and battery flowers am hoping we can all help each other out and provide useful advice and encouragement.

sonlypuppyfat Sun 20-Oct-13 16:32:11

This summer I sweated so much I thought that I was going to melt or explode! I've never been as hot ever did anyone else feel the same.

yeghoulsandlittledevils Sun 20-Oct-13 16:32:50

away! flowers

batterylow Sun 20-Oct-13 16:34:28

Thanks, not sure if it is thyroid related but suspect something is going on. Will be reading this thread with interest.

Rufus44 Sun 20-Oct-13 16:34:43

Hey there, like to join if I may. I looked at Amanda's thread and its only when you see othe people's experience that you get lightbulb moments and go " oh that explains it"

yeghoulsandlittledevils Sun 20-Oct-13 16:35:27

sonly I had the opposite problem this summer (and last winter), but have had bouts of hyperthyroidism through hot summers and it was miserable to be sweating, anxious and uncomfortable while others were tanning themselves and enjoying the heat.

Rufus44 Sun 20-Oct-13 16:36:45

Should probably say that I have an under active thyroid, I have been on 75mg lev since may 1996! But spoke to my doctor in April this year and its now increased to 100mg

yeghoulsandlittledevils Sun 20-Oct-13 16:38:27

battery I don't know anything about reynaud's. Is it an autoimmune disease? (People often have more than one auto immune disease, with grave's disease and hashimotos being the most common ones which affect the thyroid).

awaynboilyurheid Sun 20-Oct-13 16:39:07

Another who thought going up to100 levo thinking it would stop tiredness it made me very anxious and didn't stop tiredness so have gone down to 75 feeling very tired at the moment and definitely have brain fog too waiting to get referred to specialist as I need some help worried about work, has anyone had to stop because of thyroid condition I think its hard because people think you look ok except even my niece said yesterday "auntie away looks awful" I was having a bad day

yeghoulsandlittledevils Sun 20-Oct-13 16:40:48

Rufus welcome! flowers How are you getting on with the new dose, is there an improvement now it's had time to settle (or whatever our bodies take time doing to get used to it)?

ILikeBirds Sun 20-Oct-13 16:42:24

I was diagnosed with Hashimotos about 10 years ago. Recently also diagnosed with coeliac disease and now after being on a fairly stable dose of thyroxine for years I'm finding that I'm over medicated. I have blood tests scheduled but hoping that I can sort out the correct new dosage quickly.

Has anyone else had anything similar?

Anxietyqueen Sun 20-Oct-13 16:45:34

I was diagnosed when I was a child so been taking thyroxine for donkeys years!

My dosage has been altered many times (up and down).

There are a lot of disorders associated with this condition.

Rufus44 Sun 20-Oct-13 16:48:13

I think this new dose is fine, my levels were just under 5 which for someone with an already damaged thyroid is much too high.

I think my level is just under 3 now and I will keep an eye on it when I go for my next review. I was steadily gaining weight and now I am maintaining. The only downside is that this summer I got the most awful restless legs syndrome, I used to get it very infrequently but now its loads. I checked and it can be a reaction to levoxyine

GhouldenGreen Sun 20-Oct-13 16:51:36

Thanks for starting this yeghouls!

I don't think I have had antibodies tested (apart from the specific coeliac test, which was negative) - is there any advantage in knowing whether you have an auto immune condition causing hypothyroidism or does it not matter since the treatment is the same anyway?

yeghoulsandlittledevils Sun 20-Oct-13 16:52:08

Away can I ask what type of work it is you do? Could you go part time, or change your hours if already part time?
I had a part time physical job which I gave up partly due to ill health. I was using all my energy getting up and out, and working, coming home and getting into bed to rest and warm up in the afternoon, then out again to second job, back home into bed, then cooking dinner, then off to bed. No social life at all. I've always found the evenings the worst and haven't managed a social life for years, that was the first to go. blush

So, I gave up the poorly paid physical job early this year, keeping the better paid evening/self employed one. Then found I felt even worse, without the incentive to push me out of the house, so I googled what it could be, and eventually went to the doctor and asked for thyroid test. It's not the first time though, I went to get tested about 20, 15, 10 and 3 years ago and believe I have been living with hashiomotos gradually getting worse and worse all that time.

GhouldenGreen Sun 20-Oct-13 16:57:02

away I am lucky in that I only work a few hours a week and my youngest now does 12 hours at preschool - I find it hard enough managing that so it must be very difficult for you.

delasi Sun 20-Oct-13 17:07:28

Joining over from the other thread smile

yeghoulsandlittledevils Sun 20-Oct-13 17:17:35

Welcome ILikeBirds (Yes, one of my relatives was on 200mcgs for some time and had it adjusted to 100. However, she also needed a thyroidectemy somewhere along the way.)

Anxietyqueen flowers Welcome, please stay and share your wisdom! :D

GhouldenGreen All I can say is, it means a lot to me. To know what causes my hypothyroidism means a lot in itself. To know I have a high hashimotos anti-autoimmune count and that's probably why I feel so tired and depressed at times, and that I have probably had it a long time/all my life, helps me deal with my low self esteem over the last couple of decades. Mainly though, when I had my children, the cause of pre-eclampsia was not known. Knowing now that it was what caused my second child to be born by emergency c-section at 3 weeks makes a difference to me. Also, I have other relatives for whom it could have repercussions, not least my own children.

yeghoulsandlittledevils Sun 20-Oct-13 17:18:17

delasi welcome, please share your wisdom and advice as well! flowers grin

awaynboilyurheid Sun 20-Oct-13 17:18:48

Thanks for replies yes I have cut hours already before I was diagnosed, but already I was feeling ill, I teach in special needs so it is demanding and had to take time off already once when I crashed with no energy before diagnosis that was for quite a few weeks and a few days last week as I really couldn't keep going , Ghoulden dont know how you manage with young children my two are grown up one still lives with at home but it must be hard on you energy wise. yeghouls that is unbelievable all that time to get diagnosis poor you, the system for testing is all wrong the NHS should be ashamed at the treatment and diagnosis of thyroid conditions

yeghoulsandlittledevils Sun 20-Oct-13 17:21:19

GhouldenGreen I've spent thousands on counselling over the years, to try to overcome depression. Now I know a lot of that depression was simply physical. It means I am more open to the idea of there being a pharmaceutical answer to rid me of depression.

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