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Low Thyroid - what's your experience?

(48 Posts)
merryberry Mon 30-Jan-06 10:21:52

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.

suzywong Mon 30-Jan-06 10:27:29

get your thyroxene and feel normal again


there are lots of threads on underactive thyroid - it is far more common than you would imagine. If I wasn't eating my dinner right now I would link you to them.

The good news is there are no side effects that are worrying or greatly significant and if you start the medication soon you will be feeling much better by April.

merryberry Mon 30-Jan-06 10:31:06

Thanks Suzy, i must have searched wrong to miss them all. Will apply myself more diligently. Where do you live that's dinner time?

suzywong Mon 30-Jan-06 10:33:05

Perth, Western Australia, but I am a Pom

podkin Mon 30-Jan-06 10:46:24

I too posted a thread almost exactly like yours. Am just off to the doctors for an auto immune blood test. They have put me on a low dose of thyroxene at present and I will be having another blood test in a couple of months. Not sure if the thyroxene is having any effect yet, but I do feel a little less tired. Suzy also gave me advice - she is an avid fan of thyroxene !

merryberry Mon 30-Jan-06 10:50:04

Hi again, Perth? Send me a dose of that lovely smell of hot dry eucalytpus air then please! Podkin, I look forward to hearing how we both got on. My antibody test is this afternoon as well now, will make a gp appt when I go in for alter in the week. I will also be a fan of anything that gives me my mojo back.

merryberry Mon 30-Jan-06 10:51:09

I found the threads, sorry to have started a new one as well! Wasn't searching on the message content. "See doc, my concentration is shot! "

waterfalls Mon 30-Jan-06 10:52:27

My underactive thyrois is fairly mild, I am on 50 mcg a day.

spacecadet Mon 30-Jan-06 10:55:52

its not unusual to have low functioning thyroid after delivery for up to a year, mine was diagnosed after having ds1 5 years ago, however gp would not give me thyroxine until i had gone 18 months with continuous low t4 and high end of normal tsh, as you are very symptomatic i would guess that they will start you on low dose thyroxine, maybe 50 mcg to start, then you should have your levels checked every 6 weeks until they find a dose that suits you. you should notice an improvement in symptoms after about 6 weeks but it can take up to 3 months so patience is a virtue! good luck.

suzywong Mon 30-Jan-06 11:02:28

that'll be the "brain fog" merryberry

glad your're feeling even slightly less tired podkin.

A friend lent me a book about what your doctor won't tell you about hypothyroidism, it's a bit "American" IYSWIM, but there are some interesting do-s and don't-s. For example, did you know you have to check your body lotion for parapbens?

Anyway it's bathtime now but I 'll post the top ten tips for getting the most out of your thyroxene and maybe even avoiding it if you're just border line

merryberry Mon 30-Jan-06 11:06:51

thank you all, especially suzy if you can manage the top 10 info! am off to breastfeeding clinic to see what the LLL bible there can tell me about it all. aha, the young man awakes and we can get going. great timing, xx

merryberry Mon 30-Jan-06 11:08:30

and for the record, my TSH is 3.38, normal range 0.29-4.2.

suzywong Mon 30-Jan-06 13:22:52

ok then here goes
but I am not au fait with the TSH counts and all that, I don't look at mine as I feel human again now and that's all that counts. And I had ds2 and BF both kids fully before I was diagnosed, and ds2 after I had the thyroxene, so I can't give any advice about it but I don't see why you should have to stop.

OK this si fron the book, Hypothyroidism, a simple plan for extranordinary results, Ken Blanchard MD PhD.

these are 10 tips to stay really healthy once you have been treated and diagnosed. It is saying that many habits that are thought to be generally healthy can work against you if you have a dodgy 'roid. But you sould really read the book or consult your endocrinologist i.e. that's my disclaimer and I'm just passing on info.

1. Don't eat soya products as your primary source of protein. It interferes wiht thyroid hormone absorbtion if you eat more than one fist sized serving a day. Go easy on the soya milk and never wash your thyroxen down with it.
2.Don't drink bottled water exclusively, you need the iodine in tap water for proper functioning.
3.Don't avoid salting your food, for the same reason
4. Don't drink freshly squeezed green vegetable juice, again it interferes as it is very powerful
5. Don't eat fruit out of season as if it is imported it coudl be it is usually choc full of DDTs which are illegal in the States. Don't know if EU bans these kinds of chemicals but you get the gist.
6. Don't use condoms with the spermicide nonoxynol-9 which breaks down in to phytoestrogens which hamper thryoid hormone simulation. Maybe that 's something you could look into once you get your mojo back merryberry.
7. Avoid fish that have high levels of mercury which is an estrogen disrupter; swordfish, shark, tilefish (?) and tuna steak.
8. check your body moisturiser. Avoid ones with paraben, again this is some kind of -gen (I haven't got to the chapter which discusses other chemicals and their effects so I probably shouldn't be psoting this but I can tell you that means Palmer's Cocoa butter is a no-no. Bugger)
9. Dont drink from those large plastic spring water bottles, they are lined with a xenoestrogen. Again, clearly the devil's work.
10. Take your calcium supplements, yes ladies you should be taking them if you are over 35, at the other end of the day from your thyroxene as calcium.... well you guessed it... inteferes with the absorption of your thyroid mediciine.

RIght I'll post more when I get to the chapter on all the interferring "gens"

podkin Mon 30-Jan-06 13:33:07

darn, I'd better cut back on the green vegetable juice then... Looks like there are some interesting points though Suzy and ones worth remembering.

I have only been given a dose of 25mcg daily at the moment - not sure what my actual levels are, but am going to be retested in a few weeks to see what difference there is. I suspect in my case the drop in levels is due to having 2 pregnancies in very short succession. Obviously my knackered ageing body is starting to give up the ghost. Still, I am grateful for anything which will make me feel better ! Has anyone had signs of depression through low thyroxene levels ?

merryberry Mon 30-Jan-06 15:44:26

Thank you SW, I have been living off of bottled water for the last couple of years! Podkin, for me not depression as such, but I have been getting miserable due to feeling a bit useless. I look forward to things and plan stuff, but it was always greyed over with worry about managing it all while feeling like giving up the ghost. It's taken iron will to keep going, and interestingly, at 2.30pm today I said bye to mum and baby group and came home early because I feel like I have permission to be tired now I know there is a concrete reason. I brought ds home and we're having a cuddle and a play about quietly instead. Had my other blood test at 2pm and have a gp appt for thursday morning booked. looking forwward to that.

spacecadet Mon 30-Jan-06 17:41:54

depression was the first thing that i noticed when i developed underactive thyroid, i always know when my thyroid becomes low functioning again as i get brain fog and feel low.

podkin Mon 30-Jan-06 18:45:29

Well I certainly suffer from 'brain fog' big time, and have been very low for a while. I think I may have had ante natal depression of sorts as well during my second pregnancy. Just felt like 2 babies under 2 was going to be unmanageable. Of course, it's not (although the banshee like bathtime we have just got through would suggest otherwise...) and I hope that proper management with thyroxene will help me (and you merryberry)feel a lot better. I'll be interested to hear how you get on with your blood test results - good luck !

Dropinthe Mon 30-Jan-06 18:49:04

Ditto on brain fog-I am also wondering how often the levels should be checked as too much Thyroxin can be equally detrimental I seem to remeber reading!

merryberry Mon 30-Jan-06 19:05:27

i'll post back here end of week podkin - see gp thursday am. good luck to you as well, coming at you with a big hug.

merryberry Thu 02-Feb-06 11:17:21

Hi again, my repeat tests came back pretty much the same, with the free thyroxine a bit improved but the TSH figure still rising! The immune antibodies were borderline for the permanent damage thing. My choices were to wait 3 months having bloods taken frequently to give more information, or to start treatment. I wanted to wait was my knee jerk reaction, but then I remembered that I was there because I am basically not making it through the day. So I opted to start treatment. GP said it may be for life. Which made me cry. Doh.

I was offered 100mcg a day but have started on 50mcgs as was so nervous of suddenly going hyperactive. If I don't respond to up to 100mcg as expected, I get an endocrinologist referral, as I am quite borderline, plus the GP didn't expect the TSH to have gone up. We are aiming to get it down to 1 unit in whatever the measaurement was, and see where the free thyroxine sits.

Don't I sound like I know what I'm talking about ?? I don't yet, so any comments from anyone with more experience or knowledge are welcome!

Podkin, will you post back here how you get on?

podkin Thu 02-Feb-06 11:23:45

Hi Merryberry

Well, it sounds like you have a lot to take in. I think 50mcg is probably a good starting point for you especially as you are 'borderline'. I have only been given 25mcg at the moment.
I will have to wait until next week to get my results - will ring them on Monday and see what they say.
It is a bit scary to think you will have to take medication for life. I was similiarly upset but if it makes you feel better, hey who cares... plus you will get free prescriptions !
I'll let you know how I get on and please keep us updated on how you get on too. Take care

angelsmummy Thu 02-Feb-06 12:23:36

Sorry to but in, but I wondered if you advise me if the free prescriptions podkin mentioed are just for the thyroxene or for all items on prescription. I've just had radio active treatment for an on going over active thyroid and now the thyroid isn't working at all I don't feel much better than when it was overactive, I'm getting a few of the symptoms mentioned on here, but put it down to the fact I am stuck in the house for the 25 days after having radio active treatment. I was warned that I will probably have to go on thyroxene for the rest of my life but apparently that is "safer" than the medication I was on that tried to slow the thyroid down?
I'm seeing my consultant next week, and I am about to prebuy my prescriptions for the next 4 months...do you think its worth hanging on or will my other medicines still need to be paid for?

Dottydot Thu 02-Feb-06 14:23:21

don't buy them! It's free prescriptions for everything you need - not just thyroxine!

Dottydot Thu 02-Feb-06 14:26:56

I'm on 250 - 300mcg a day thyroxine! Totally buggered thyroid gland after 2 lots of radioactive iodine (because I used to be overactive which was much more fun - dramatic weight loss, felt on a high all the time - really buzzy...!). Being under active was horrible - I felt cold, low, depressed etc. etc. Now my levels are just about normal but it's taken about 6 years of messing around with my thyroxine dose to get it right. If I have 250mcg it's not quite enough, so I tend to alternate between 250mcg and 300mcg.

suzywong Thu 02-Feb-06 14:36:03

oh dottydot glad you have finally, what a wait, got it right
FWIW, I am supposed to take 175mcg so I do one day of 200 a nd one day of 150, maybe the same set up would work for you?

Don't cry merryberry, it's not that bad

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