Anyone with underactive thyroid?

[babysteffee]

Been on thyroxine for underactive thyroid for just over a year and medication is getting me so stressed... levels up and down until they stayed on 200mcg. Memory is terrible and I forget to take the tablets, and to go back to the docs for more. Tablets make my heart beat really loudly which worries me, and make it extremely difficult to get more than an hour or twos sleep a night, literally lying awake for about 5 hours. When I don't take the tablets I feel tired/withdrawn/unable to concentrate on anything and stress makes everything ten times worse, so always trying not to get stressed... weight is increasing or staying the same whatever. I've talked to my doctor and had my tablets reduced 6 mth ago but he says there's nothing more he can do.

Seriously considering trying something like Alvidar or Thyax, has anyone tried these?

Kama, you have been very lucky to have had blood tests so often. I've been on Thyroxine for nearly 4 years, and in that time I've had my blood levels checked exactly three times.

From what my GP has told me, it's quite common to end up taking more Thyroxine than you need, simply because of the increments that the doses come in - if you need somewhere between 100 and 150mcg, say, then you will be prescribed the higher level. Taking "the perfect amount" is difficult when the doses available don't come in "the perfect amount".

wwb, thats intersting, i get tested every 6 months and if i dont make the appt, the gp calls me in, once i was put on 125mcg by the hospital when last preg and was prescribed, one pack of 100 mcgs and one of 25 mcgs, im now on 150, so just have one pack.

My GP now has a system on the computer that alerts him to the fact that a test is due, so hopefully things should be much better in that respect soon!

Interesting about the doses; my GP reckons he can only prescribe in 100mcg and 50mcg packs, so for 150mcg I have to have 2 packs, and would still need 150mcg even if I only needed 125mcg. Maybe he needs to read up on current practice and dosage a little bit. Or maybe he's just a pillock.

pmsl wwb, when preg i get my tabs from the hospital so maybe thats why, i see a thyroid specialist as well as a obs con and its she that prescibes(im yet to see them this preg), she always tests more thouroughly than the gp though, she does tsh, t4, t3 and thyroid anti-bodies, gp will only do tsh which isnt really good enough.

I am on 175, 200 one day 150 the next and I feel great. I am due for a 6 month blood test ( I go to the lab myself and see the gp 48 hours later - Australian system not NHS). But I'm terrified the gp will drop my does and I'll have to go back to .......... well you know how it was before.

Does anyone have the same problem as I do re periods-ie every two weeks on the dot and I bleed for England??

No but that sounds awful, have you seen your gp? What about trying something like the pill or that new hormone coil to try and calm them down?

When I got a copper coil first in I bled for 17 days on my first one after and had a 2 day break before I had another, I was so depressed!

Yes am trying the new c patch-I only stopped breastfeeding after 18 months too which has probably not helped the hormones.Am starting when my next fortnightly starts anyday!!

I have been on thyroxine for 12 years had my dosage trebbled last year to 150mcg following a miscariage when the hospital highlighted that gp hadn't been controlling it correctly. If you are getting nowhere with the GP may i suggest requesting a refferal to a consultant at the hospital. I used to forget mine occassionaly and when first diagnosed the gp did not stress how important it was to take my meds. Now have a morning routine where i take them with my breakfast and have not looked back. If your heart is racing your dosage is too high. My bloods are taken every 2months at the moment as i am pregnant but I usually have them done every 6 months and i ask what my results are for both t4 and tsh. Try looking on thyroid uk Can't remember their web address you could google them. I found them really helpfull. I have finally started to loose weight as well since they upped my dosage. Down from a size 22/24 to a size 18 even though i am pregnant!!!!! I was 94kg pre pregnancy and now with 4 weeks to go i am 94.3kg not bad.

Saw an article in yesterday re bone density. Apparently, there is a new nose spray based on a hormone from salmon that boosts bone health.The hormone calcitonin is known to help regulate calcium and decrease bone loss.
One for our diaries,perhaps??

ooooh that's interesting, yes keep your eye on that one

I finally got my blood tested today after 7 months since last one, will see GP monday. Bloody hope they don't lower my dose.

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CALCITONIN What is calcitonin?Calcitonin is a natural thyroid hormone which normally helps regulate the level ofcalcium in the blood by acting on the skeleton. Bone is a living tissue which iscontinuously being broken down by osteoclast cells and built back up by osteoblastcells. Each cycle of breakdown and build up takes about 200 days. Calcitonininhibits the osteoclasts, prevents bone breakdown and allows the osteoblasts tobuild bone and so gives a small net increase in bone density. How is it used?Calcitonin is given by injection of synthetic salmon salcatonin (Calsynar, Miacalcic). It is given as 50 units every other day. Oral calcium supplements (500 - 1500 mg daily) and vitamin D (400 - 800 units daily) are given at the same time. This is anexpensive therapy as each injection costs over £8.00. As a result, calcitonin isprimarily available as a treatment for osteoporosis through a hospital, it is rarely usedby GPs and only on a short term basis. Research studies show that calcitonin may increase bone density but there is little data on fracture prevention. Calcitonin is now also available as a nasal spray called Miacalcic. Therecommended dose is 200 iu which is one spray into the nostril daily. As with the injectable calcitonin, Miacalcic is recommended in conjunction with an adequatecalcium and vitamin D intake. Who is it suitable for?Injectable calcitonin is particularly useful as a short term treatment after vertebral fractures. It has an analgesic (pain relieving) effect and can help with acute pain. It has also been shown to be useful in increasing bone density in cases of osteoporosis that occur after immobilisation or steroid therapy (again no data on fracture prevention is available). Some centres have used injectable calcitonin afterpregnancy induced osteoporosis.The Miacalcic nasal spray is licensed for the treatment of established osteoporosis for post menopausal women. Unlike the injectable calcitonin, it is recommended forlong term use rather than short term and has been shown to reduce the risk of new vertebral fractures by 33% and further vertebral fractures by 36%. As Miacalcic is licensed for post menopausal women only, no studies have been done in pregnant women or nursing mothers. Does it have side effects?Flushing can occur after an injection in a number of users and this can last up to twohours. Other side effects include nausea, tingling hands, unpleasant taste and, in a very few cases, allergic reaction. Calcitonin interacts with some diabetic tablets and with certain tablets called cardiacglycosides e.g. digoxin.
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/ more ??May 2002- 2 - The nasal calcitonin can, in a very small number of people, cause an allergicreaction. More common, but generally mild, side effects include dry or blocked nose, sneezing, inflammation of the nasal lining, flushing, headache, diarrhoea, nauseaand flu like symptoms. Further adviceGeneral advice to anyone who wishes to minimise the effects of osteoporosisincludes taking a well balanced, calcium rich diet, avoiding smoking or excessive alcohol intake and taking regular, weight bearing exercise. Further details on this and other treatments available for osteoporosis, may be obtained from various NOS booklets - see Membership & Publication leaflet.. The information given in this Information Sheet has been prepared inconsultation with members of the NOS Scientific Advisory Group (SAG) as general advice on the subject. It is not intended to replace specific advicefrom your own doctor.

WOW! My first copy and paste on mnet!!

Recently started on thyroxine as low thyroid in pregnancy. Take 50 dose every morning 30 mins before breakfast. I also take a medicine with cholyestramine in that's not compataible so have had to redo my schedules for this. Interested to hear about bone density probs as this is also a side effect of cholestramine. I'll be asking my doc on this one.

blimey dropinthe.that took some ploughing through, thanks though, i found before becoming preg that my periods are very very heavy, i soak nightime towels in 5 mins.

yeah the heavy flow was not something I knew about until it happened... tedious isn't it

Are you all on Iron too?

Have been on thyroxine for 13 years. When it was first diagnosed, I couldn't believe how much better I felt after the first week. When pregnant with ds 2 years ago levels fluctuated quite a bit and wound up on a slightly higher dosage than before when all was said and done. Levels are borderline low but dr. says that increasing my dosage will increase my risk of osteoporosis later on. I read up a bit on things and decided to start on omega-3 supplements which seem to have helped. It will be interesting to see what my next blood test shows.
BTW, I keep my pills right by my toothbrush and take them when I brush my teeth in the morning.

right so that's calcuim, iron and omeg-3 supplements to be aware of
I shall grill my GP on Monday when I go in for test results

Very encouraging to hear of long term users not having any pre-menopausal side-effects

Today,I have really BAD pmt-saying that,going on the fact that I have been having periods every 2 weeks on the dot for the last 4 months I should have come on last weekend so maybe the Thyroxine is starting to work and I'm getting nearer a more normal cycle.That would be great because I was feeling pre menstrual pretty much most of the time before-today,am feeling like poo,crying alot and unable to do much else than sit on here.Doesn't help that I can't drive as dislocated my knee three weeks ago and am stuck indoors with two very bored boys!
Moan over! Sorry!

Oh poor you dropinthe!! I hope you feel better as the day goes on

I posted a little while ago on this thread - I am awaiting results of blood test for suspected thyroid probs. I went back to see doc yesterday as the lump on side of my neck has got worse. SHe said it could be related to my thyroid and basically wait for test results.

But when I said I would call in for results after my holiday (leave on Sat) she was like "oh how long are you going for, where are you going, oh thats OK that holiday camp should be covered by a GP!!"

I didn't think too much of it at the time but its worrying me now. DOes anyone know if thyroid conditions can get very serious in a short space of time???

Sorry for rambling but as you can probably guess I'm a bit of a worrier with anything health related

im not on iron tablets, although i know its only a matter of time, being preg, i normally get slapped on them at about 20 weeks, my hb is borderline normally though so they wont give me iron.

Sorry Fickle not around! I would go to the hopital if it got any worse just in case it is something other then Goitre,(not sure if that is how you spell it but know its something like that)-Google it and check out the symptons and how fast a lump can appear,eh?-for you own peace of mind-are you going away for one week or two?

I don't think thyroid can suddenly get worse in a short space of time, but it could be something else (don't mean to worry you!!) so might be best to locate the nearest GP on holiday just to be on the safe side... tbh, it does sound like a goitre/thyroid problem (though I'm no expert!) so I wouldn't worry.

Does anyone know the list of foods you're meant to avoid with u/thyroid, figured while I'm taking the thyax, I might as well go the whole way and try and improve it by simple changes.

Thanks for the replys. I'm only going for one week and tbh can't see it getting any worse (fingers crossed)

All this isn't exactly putting me in the holiday spirit though

Oh well, I'll know one way or the other next week when I get back. The thing that really bothers me if its not thyroid related - what the hell is it??????? (Mildly crapping it!!....)

I'll keep you posted.

Thanx

Relax and enjoy your holiday and try and pretend its not there!