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

[ivykaty44]

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

see I have been told I will not have the RAI or operation until they see whether after 18 months on carb ( I can't have beta blockers due to asthma) I go into remission which is a 50-50 chance of doing so and if I do get lucky it could possibly be 20 years they just don't know. Unless something really goes wrong in the mean time and I need to have RAI or surgery. Thats why I was wondering, nothing more

I am hypo currently taking 75 mcg but am suffering with major pins and needles in my hands and feet.....does this sound familiar to any of you??? Could it be thyroid connected ?
I am not under a specialist but am going to ask for referral on Monday.....am going crazy with pins and needles!!

Thanks for your replies. I will phone the Dr to find out what my thyroid levels are. The only information I can find is from last year when it says that my TSH was 9.68 with a T4 of 10.9. Does anyone know what the T4 is and what I should be aiming for?

T4 is the stuff that the thyroid pumps out and if there is to little you are hypo and if there is to much you are hyper, opposed to the TSH which is the trap door letting the T4 and T3 out - a higher number means the door is further shut thus not letting the T4 and T3 out into the body and a lower number means it is further open letter far to much out.

Sorry but that is the only way I can think about it in my own mind to try to understand.

T3 and T4 are the same substance but one makes the other

The/if it is, autoimmune part is the antibodes tell the TSH the door to open or close somehow - I think, still trying to get to grips with that part.

Had total thyroidectomy in 2005. Diagnosed with papillary and follicular cancer tumours in both lobes and had two lots of radio-isotope therapy (swallowing radioactive iodine to kill off any remaining cancer cells). I had this done twice as the cancer cells returned in 2007.

Was advised that I would more than likely never have any more children (had one boy at the time who was 8 at point of surgery). At one point doctors thought I was experiencing early menopause.

Now 40 and 23 weeks pregnant with 2nd child and over the moon that I am.

I take 200mcg of thyroxine a day and levels have remained low and good so far.

Get very tired (more than usual) but coping well.

Ivykaty I have been told exactly the same information as you. 18mths on the carbimazole. Although because of my eye symptom the consultant said its inlikely to go into remission. I have been doing alot of research and trying to make some lifestyle changes to see if it helps. I was surprised that someone was givem rai so soon. It seems to vary from one health trust to another.
Do you mind katy, but what dose are you on and how do you find taking the carb?

im on carb 40mg, as i was taken off the beta blockers due to them restricting my breathing, I have got to stay on the higher dose of carb fro the moment until my heart rate lowers further.

I asked to see a dietcian as why not get support for making any lifestyle changes - I am with you on that one.

I have done some research and there is little about vit d but I am am sure that if drug companies where to research it it may prove viable to use along side lifestyle changes to see what happens if you take it. Vit d is not a drug that can be sold though and little it seems has been tested. Though in japan it seems that graves is linked to low vit d - though we are caucasian and not Japanease..?

I have noticed that in the USA they seem to move quickly with the RAI or surgery and only wait a couple of months with drugs and then operate.

Indeed one peice I found a woman had refused and they told her she would die without treatment - she took carb and beta blockers and changed her life style and has been fortunate to go into remmisson.

I have ordered vit d and will ask for a blood test to check. but you can only have one blood check per year on NHS or vit d... so i will have to pay if I want to knwo agian what the levels are.

i was phoned on Monday and asked if I wanted to take a cancellation with the dietcian and did, it was ok but my diet is fine a little more calcium until I told her I eat sardines and mackrel on toast regular and she will look into vit d for me - though she is bound by government guide lines on what she can tell me.

can I ask what life style changes you have made?

LPG wow that must have been so hard for you - that is so great your second baby after being told no more..

I was diagnosed with Graves disease(over active) when I was 9. Crazy behaviour, emotional, hysterical all that stuff - doc told my mum I needed more attention - hmmm. Luckily another day my mum took me I saw another doc who had me rushed off to hospital that same day. Was in hospital for a month on complete bed rest, heart murmur, high blood pressure etc. On carbimazole until I was 18 then all was well for a few years. Back on it when I was 23 then off again at 25. No more meds since.

I had a multinodular goitre removed from my thyroid about 8 years ago and I'm now functioning just fine with half a thyroid.

Under active. 11 years. 175mg thyroxine.

Underactive here, diagnosed 8+ years ago due to failure to conceive. I think it had been wrong for many years though. No faffing around with 'is she, isn't she' thanks to stonking TSH level of 128. 100mcg of thyroxine a day, whcih I've been slack about taking over the last few months, and boy can I tell.

My maternal grandmother had Hashimotos so once I had my diagnosis the family upped the pressure on my mum (history of depression, weight gain, etc) to get tested. She turned out to have ... hyperparathyroidism. Weird.

graves diease here ,total thyroidectomy in sep 2010 they damaged my parathyroid as well so now also suffer from graves and parathyroidism as a result currently on 125 levothyroxine,4 mg alfacalidol and 1000 mg calcichew tablets 4 times a day these thyroid disorders are pants

forgot to say need emergency removal of my thyroid after being on carbimazole and not responding and being put on ptu with little results,and having really bad symptoms .family history of resistant graves in the family

Underactive on 50mcg of thyroxine a day. Diagnosed for getting on 9 years and took over 5 years to achieve a diagnosis.

I get pins and needles in my hand a lot too!

Hi I am underactive,on 50mcg, and 36 weeks pregnant. i saw the consultant yesterday and he was saying something about keeping the baby in hospital and monitoring its thyroid levels, plus I've been reading all this stuff about babies with low IQ. I'm now really worried as this is the first I have heard about it.
I have been having regular (6weekly)blood tests and they have been coming back normal, so I havent had to up my dose during the pregnancy.
Has anyone had experience of problems with the baby's health after birth, or any experience relating to this?
I'm going to call the midwife tomorrow and get her to explain as this has all come as a bit of a shock to me, as it is the first I have heard of it.

Me! I've got hypothyroidism.

I went to the GP about four months ago suspecting I was possibly diabetic, having had some wicked symptoms. I had blood tests which showed my TSH was 79, and my T4 level was 0.01.

I've been on levothyroxine since and had the dosage increased steadily. I've got another blood test tomorrow for it (and pancreatitis) and considering I'm back to sleeping for 10hrs a day and constantly tired, I reckon it will be increased again.

ivykaty44 thank you so much for your lovely response. It was such a difficult time of my life to get through yes. I was also a single parent at the time having been such since my son was 3 months old and I was living in Australia with no family. I lived there from 2003.

My Mum came out every year and when I was really sick and in hospital and convalescing, she came over for extended periods.

I came back to the UK in the latter part of 2010 to start a relationship with the most wonderful man and friend, who I have actually known since I was 15!! My DP is 43 and has a grown up son and my son Dylan is now 13 and lives with us.

We're so excited about our new arrival and thank God everyday for the blessings in our life.

I would say to anyone in a low place and struggling....never give up, you just don't know what the future holds.

anyone got any good reading material on thyroid problems?

Adding myself, hypo
Will come back and read the whole thread later

Me.

I had thyroid cancer in 2001.

Papillary that presented in a follicular form (how I don't know)

I had a total thyroidectomy, and then further surgery to remove cancerous lymph nodes, and then the iodine treatment.

I now take 200mg a day, which gives me "more than adequate" replacement (as in enought to ensure the cancer stays away), but I think it is too little.

I have had 2 DC's since this, one in 2005 and one in 2008.

jammygal ....chronic pins and needles in hands and feet was the thing that got me to the doc's in the first place

all other symptoms I had put down to being a working mother of three, too tired, too fat, too dull, too old :(

Me too, diagnosed after ds was born 8 years ago following a blood test as I was having lots of headaches. Dr asked if I was tired - I'd just had my third baby in three years, so obviously I was. I can't say I feel much different now, am on 175 and have regular blood tests.

Underactive or hypo diagnosed during 1st pregnancy

hello all and very glad to find this thread. Like Blinks and others i have had a lump removed (partial thyroidectomy) and then been told it was cancer - so am now awaiting a date for full thyroidectomy and surgeon is saying i will need the radio iodine treatment.

can anyone who has had it tell me more about how it works logistically? All the info i have found online talks about avoiding children for weeks - not really possible! will i have to go somewhere isolated and child free? I work for myself so need to minimise time away from work too - after the first op i was back within 10 days (it was over Christmas/NY so not too disruptive) but would the radio iodine have a longer recovery period?

thanks for any advice and good luck to all x

So can anyone tell me how to get rid of the pins and needles? I've been getting them more and more frequently over the last couple of months, especially when I'm sleeping.
I had thought it was RSI until I saw it mentioned on here.