Low Thyroid - what's your experience?

[merryberry]

Hi all, got a letter from gp this weekend that my circulating thyroid levels are a bit low (outside the normal range). They are going to repeat this and do an autoimmune test to see if this is a permanent or post-partum thing in my case.

I am mostly wondering - if this looks like a mild case and is the post-partum type, will they still treat me with thyroxine? I am longing to feel myself again, and have normal energy levels. I also cannot see how I will add work into my life in April unless I perk up.

I presented at the GP with 11 hours a night sleep and still tired, lowish breast milk supply (7 month old still feeding every two hours in the day), sensitivity to cold and continued slow weight gain despite a really healthy balanced food intake and as much exercise as I can manage.

I also have a frog in my throat while swallowing and skin so dry I moisturise 3 times a day! Haven't mentioned that the gp yet. Am now alert to these as symptoms though since reading up a bit. My circulating levels are 10.5, normal population range 12-22.

I would be very grateful if anyone else could tell me what has gone on for them.

In a rush so not read the whole thread - in case you don't already know - you should now be entitled to free prescriptions

Dotty, can I ask you if your radioactive iodine work at all the 1st time? I'm dreading if this hasn't worked becuase I don't think I could go through this being apart from my dd again

Hi - no, I'm afraid to say it didn't... I was lucky in that I didn't have children when I had both treatments. Sorry - I really hope it works for you first time - ask your doc about the stats but I'm sure it does for most people - I just had a v. stubborn thyroid gland!

Just read your last message by the way - I wasn't told to stay in the house for 25 days after treatment - I think I had to have 10 days off.

I've had to pack my dd off to my mums for 25 days because of the radiation risk as she is only 3, I wasn't ordered to stay in for the full 25 days but I've been so down and felt so ill I've had no inclination to go out.

Thanks for the advice. Another quick ? why did I have to start the carbimazole if the thyroid has been "killed"?

just cat you!

Evening chaps!

How long should the email take , chaps?

hmmmm should be with you by now, will try again....

angelsmummy - not sure! I can't remember but I think it takes some time for the iodine to kick in - a few months?? so you'll probably need to keep taking carbimazole until the iodine's done its stuff - and then it'll be onto the thyroxine..! (my what exciting lives we lead...)

Thanks for that Dotty, my head has been so up and down I don't think i've taken them as I should, I'd better plan a routine!

I don't know about killing the thyroid, I think it got my brain by mistake, I can't remember a thing!

blimey i'm getting off lightly reading your experiences! i am having 50mcg twice a day, rather than 100mcg twice a day. nowhere i read seems to suggest that twice a day is neccessary, so i'm wondering about this a bit.

never mind. my breast milk is a-go-go now. it is very dramatic the increase in supply withing 48 hours of starting thyroxine for me. i think i am a bit perkier as well, but picked up a dose of food poisoning so hard to tell.

oh hurrah! Welcome back to the human race merryberry

The twice a day bit is weird tbh. Thyroxine isn't an 'instant hit' type of thing, that's why they tend to wait a couple of months between changing your doses and doing the blood tests to check your levels. I upped my doseage to 175mg in December and was given a blood test form and told to get it done 'some time at the end of February' With that kind of turn around I can't see how splitting a days dose could make any difference at all?

that's what i thought as well serenity. it's a real pain taking it twice a day as i'm having to dance it round ferrous supplmentation as well. i take the morning dose at about 4-6am, when ds has a feed. i think i'll check in with a pharmacist when i get some fresh air this afternoon.

hi all, i'm putting my hopes on suzywong and other thyroid experts on this thread to help me out.. have had hypothyroidism since the birth of ds1, and was on a lowish dose of 75mcg of levothyroxin. then got pregnant again, during pregnancy dose was increased once to 100mcg, and tsh levels were kept around 1.4.
so far so good, now ds2 was born 9 weeks ago, and gp i saw at 6wk check said i should go back to pre-pregnancy dose. she did a test, and said values showed i am overcompensated. i'd be happy to believe that, if i wasn't feeling v.hypo: extremely dry skin, tired, brainfog, cold. i did loose my (2nd) pregnancy weight already (which i thought was v.quick), but am still about 10kg heavier than before 1st pregnancy. does anyone know if these could also be symptoms for hyper, or if i should check with her/go for another test??

hi,i have had under active thyroid now for 8 years.my gp initially treated me for depression for 6 months,until i went in there crying my eyes out as all my joints hurt with the weight gain.he did a blood test,and i got a phone call telling me to go in immediately.turned out that my thyroid level was so low that if i had left it another two weeks,i would have been in a coma and within 6 weeks i would have been dead!(my gp doesnt mince his words!)he told me that i wouldnt be able to have anymore children as it can cause infertility.well,i had 3 kids than,ive now got 5!i'm on 150mcg a day,which when i was pg with last dd went upto 250mcg!i often forget to take my thyroxine (one of the symptoms of hypothyroidism is forgetfullness) but if i forget for more than a couple of days,i feel totally shite!my new gp had a right go when i told her i forget,she actually told me that your heart can slow down to the point where it will just stop,also forgetting to take them can cause kidney probs.im still cold most of the time,and am always tired (but that could be the runnning around after 5 kids!!)

honneybunny - I recommend you ask your GP for your results - they should tell you the result and the corresponding "normal" range for the tests
Did they check your iron levels too?

According to my consultant the body often overcompensates post pregnancy - I ended up on a much lower dose after having my DS. 12 mths on I am now on a bigger dose but still not back to what I was taking pre preg

I have had hypothyroidism for 10 years at least but managed to get pregnant quite easily. I have had my first blood test at 9weeks (my GP and consultant were happy for me to have it at 12weeks but I wanted it sooner). I was quite upset to discover my TSH level was 12.8 and have had my dose increased from 175mcg to 200mcg and been told to increase it again in 2 weeks to 225mcg. My freeT4 was in the mid range and my freeT3 was just out of the bottom of the range.

I am worried this may have had an effect on the development of the brain amongst other things and am annoyed I wasn't monitored more. I haven't had a first scan yet as I am now only 11weeks so have no idea if this has been detrimental or if indeed a scan would show any problems caused by not having enough thyroid hormones. Has anyone had similar experiences?

I would recommend anyone with hypothyroidism to make sure they get tested earlier than the 12weeks GPs recommend to make sure their levels are correct.