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

(365 Posts)
ivykaty44 Sat 29-Jan-11 11:57:35

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 grin

LadyDamerel Sat 29-Jan-11 12:01:48


Underactive, diagnosed 5 years ago after my 2nd pg. Now on 150mg thyroxine a day which seems to keep it relatively under control.

doozle Sat 29-Jan-11 12:01:49

I have Hashimoto's.

Yes there are lots of us on here with thyroid issues.

joeyjog Sat 29-Jan-11 12:05:24

I have underactive thyroid diagnosed 10 years ago and I am on 200mg thyroxine daily.

crumbletastic Sat 29-Jan-11 12:11:22

I have graves disease, I can get quite overactive quite quickly and go quite mental. I currently am underactive and endocrinologist is unsure whether I am overmedicated or I have switched from over to underactive. Apparently it happens from time so I'm now on Levothyroxine and it seems very strange for me to be getting fatter and being so tired when I'm used to eating like a pig whilst still losing weight, and having an excess of energy.

shinyshoes Sat 29-Jan-11 12:13:44

I'm underactive - diagnosed 2 years ago after 3rd pregnancy, i'm currently on 125mg daily

PrettyCandles Sat 29-Jan-11 12:20:22

I'm in a slightly weird situation, in that I may or may not have an underactive thyroid. Blood tests are unclear, but 50 mcg levothyroxine eases a lot of my symptoms. GP thinks it may only be temporary, and that once other things are sorted I may no longer need the additional thyroxine.

TBH I dread coming off it.

heartsnflowers Sat 29-Jan-11 12:23:53

Underactive too

ivykaty44 Sat 29-Jan-11 16:18:09

a few of us then, can I ask did it take a long time to get diagnosed either by you going to gp or the gp not knowing?

sneakapeak Sat 29-Jan-11 16:54:56

Under active.

Diagnosed (quickly and easily) after birth of 2nd 1 yr ago. Was on 50mg then after a year went back because symptoms were back.

He upped it 2 weeks ago by 25mg to 75mg and I was so frustrated with feeling terrible (and constipatedblush) that I went back a week ago and demanded another 25mg so it was 100mg.

Im now finding I can sleep at night and my heart is racing. I may have jumped the gun but im swithering about going back so soon incase they never listen to me again blush.

Does this sound like just a settling in period as it was only upped a week ago or does it sound like too much?

sneakapeak Sat 29-Jan-11 17:02:54

cant sleep

KurriKurri Sat 29-Jan-11 18:39:41

under active here. I'm on 50mg, but I'm starting to feel some of the symptoms returning. And I'm struggling to shift the weight I put on before I was diagnosed. very frustrating.

camdancer Sat 29-Jan-11 19:48:03

Underactive. Was diagnosed almost 20 years ago now. It took ages (1 1/2 years) to be diagnosed because I was a teenager and they thought I was either just being lazy, grumpy and greedy or had glandular fever. Amazingly in that time my Gran and Mum were also diagnosed with underactive thyroid but no-one thought to check me. I'm now on 150mcg daily but because I'm pregnant that doesn't feel quite right. Blood test on Wednesday. We shall see.

sneakapeak it does sound like you might be on a bit too much. What about trying alternate days 75mcg and 100mcg? That way you and the doc were both right. wink

LadyDamerel Sat 29-Jan-11 20:14:27

camdancer, when I was pg the endo consultant said I had to have an extra 50mg to make up for what the baby was using - have you upped them at all since you found out you were pg?

There is a link with low thyroid in the mother and lower IQ in the child if it's not well controlled during pg.

Ideally you should up your meds by the 50mg and have your levels checked every 6 weeks, making sure you're under 2 while you're pg until they're happy it's stable.

I was automatically referred to an endo as soon as I found out I was pg so I would ask your midwife/gp if you haven;t been.

ivykaty44 Sat 29-Jan-11 20:31:55

Whilst we are treated for the symptoms which are hyperthyroidism or hypothyroidism, and i knwo there is not a cure for the autoimmune disease Graves or Hashimoto's, or few rare other types. Does anyone get information about their antibodies?

has anyone been told the antibodies level at the start of there treatment or during their treatment?

I don't mean the T3, T4 and TSH levels

Columbia999 Sat 29-Jan-11 22:56:56

Underactive here, on 125mcg daily and it took ages to get a proper diagnosis, because apparently it wasn't underactive enough.

nipplesofthenorth Sat 29-Jan-11 23:01:05

Underactive here. Took ages to get a diagnosis - 2 years of borderline blood tests but now on 100mg thyroxine. Both parents are hypothyroid too.

Jux Sat 29-Jan-11 23:10:01

Underactive. DX not long before Xmas(as far as I can remember). Posted on here for advice. Had 2nd blood test recently and my tiny dose of 50mcg had made no difference whatsoever, so for the last week I've been taking 100mcg. Am hoping that dose will be raised again at my test in early March.

blinks Sat 29-Jan-11 23:21:58

underactive now as i had thyroid cancer so had a partial thyroidectomy last year.

awaiting poss total thyroidectomy and then radioactive iodine... boohiss

take 75mcg and generally alright but sluggish in the morning and some hair loss at hairline.

camdancer Sun 30-Jan-11 07:40:09

LadyDamerel Thanks for the info. I have already upped my dose twice this pregnancy - up 25mcg in total. My consultant wants me to keep my TSH under 1.5 (it was 2.1) - although I like it well under 1. It was last upped 6 weeks ago, so I'm due a test to check it is working. I had to go up 50mcg in my other pregnancies so I think I will still be over 2. My consultant didn't want to up my meds 50mcg immediately because I was so close to 2.

ivykaty I had my antibodies checked during pregnancy, but don't think I had it done before treatment. But then my brain doesn't go back that far!

spidookly Sun 30-Jan-11 08:02:43

<raises hand uncertainly>

thyroid levels normal when last tested but had partial thyroidectomy to remove a benign tumour last year.

There is hypothyroidism in my family though and I know some had difficulty having it diagnosed.

I'm struggling with "unexplained" weight gain, as I'm breastfeeding (I'm a fat breastfeeder) and have been pg or bf or both for 3.5 years, so there are explanations for my continuing fatness, but I seem to be really struggling not to gain even more. It just feels like my metabolism has changed a bit.

blinks sorry to hear about your dx I hope you're feeling OK in yourself. Do you know anyone who's had thyroid cancer?

When I was awaiting my results, talking to a friend who'd had it and laughing our heads off at her radioactive iodine experience (funny years later, just surreal at the time) really helped.

blueberryboybaitonSafari Sun 30-Jan-11 08:07:51

Overactive here currently waiting for it to stabilise after DD2 was born. I ave a feeling my PTU dose is too high as I am increasingly sluggish and gaining weight. Had bloods taken on Friday so hopefully results on Tuesday and a dose reduction so I can get on with a bit more energy.

QODthesurrogacytrendsetter Sun 30-Jan-11 08:32:37

u/a for 5 yrs now

ivykaty44 Sun 30-Jan-11 09:46:10

blinks sorry to hear about your dx sad

camdancer it seems hit or miss from what I can find as to whether you have the antibodoies test? But I could be wrong on that so that was why I asked.

blinks Sun 30-Jan-11 11:47:46

thanks ivykaty44 and spidookly.

i didn't officially find out the tumour was malignant until it was removed so i've not had a horrendous ordeal... i was blissfully ignorant i had cancer.

having a tricky time deciding whether or not to have the full thyroidectomy though as my surgeon/consultant says with the type of cancer it was (non invasive follicular carcinoma),the full thyroidectomy with radioactive iodine is only a preventative measure and he feels it's unnecessary BUT the panel of consultants at the hospital are recommending i have it!

arrrrgh i'm thinking i'll probably go ahead and have the operation and treatment but will wait until later this year as my husband is recovering from pneumonia (what a years we've had!) and it'd be too much for him right now to look after the kids alone etc...


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