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Original poster

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

364 replies

ivykaty44 · 29/01/2011 11:57

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

OP posts:
LibraPoppyGirl · 06/02/2011 22:31

Hi sinclair I've been through the radioisotope treatment twice. I'm not going to sugar coat it at all. It's horrible.

You are in isolation at the hospital for a week, because you are radioactive. On return home, you can't hug your kids or be in close proximity to them for about a week. If you have a partner then it's best also to sleep alone for a week because you are still slightly radioactive. You needs to keep towels and face cloths and your washing separate. Keep your own cutlery and crockery too, just for a week. After this first week back at home you can 'blend' in with everyone else again.

Physically though you will feel like shit. You have just swallowed and ingested something that is radioactive, your body does not like this and it will react. You will have no sense of taste....

LibraPoppyGirl · 06/02/2011 22:35

....other than a horrible metalish medicinal taste in your mouth for about 3 months. Some say to eat strong flavoured food to restore your taste buds quicker. I found this worse and stuck to bland food, ie mashed potato and scrambled eggs and the like. Your taste buds will have been ablated to a certain extent, along with your saliva glands. While you are in hospital you should suck on quartered lemons pieces everyday throughout the day, to stimulate the saliva. I had trouble with this and my saliva glands have remained damaged due to the ablation. Try to do it though as much as you can, it does help, even when you are back at home.

Rest as much as you possibly can. You will be shattered. It really does take it out of you. I had the added complication of being allergic to he compound iodine, but this is not common. However, untreated it does result in the same reaction as a peanut allergy, anaphalactic shock (don't know how to spell that).

Please feel free to PM me for any other help I can give you.

Good luck LPG x

LibraPoppyGirl · 06/02/2011 22:40

Bearskinwoolies I still suffer badly with the pins and needles even with no thyroid and just on the levothyroxine. Don't know what to do about it, and the doctor doesn't seem to know either.

Just as an extra to my previous post, if you are have a total thyroidectomy due to cancer, you will have to remain on high doses on levothyroxine, not just to replace the hormones but also as suppression therapy for the cancer. My levels were too low after my first radioisotope treatment and that's when the cancer cells returned and I had to go in for the second treatment.

Bearskinwoolies · 06/02/2011 22:43

Thanks LPG, at least it's not just me going nuts then!

eddiemccready · 06/02/2011 22:43

Ivy Katy- I've been reading a book by Mary J Shomon, Living well with graves disease and hyperthyroidism. There is a lot of useful information in it. I've been looking at my diet and trying to eat more foods with efa, which calm inflammation. Also including foods which block iodine absorption.

eddiemccready · 06/02/2011 22:47

Libra poppy girl,that sounds tough. I have np plans for Rai yet, but my consultant said it will be on the cards for the future. I didnt realise you had to stay in hospital for a week. I thought you could go home and stay away from people. My mum's house has a downstairs loo, living and bedroom that was built on for my granny, and I'd hoped to stay there.

EldonAve · 06/02/2011 23:08

re the pins and needles - it is worth asking the GP to check your B12 levels

Bearskinwoolies · 07/02/2011 00:55

I've just had a load of bloods drawn friday, will ask if they've checked the B12 levels. Thanks EldonAve Smile

LibraPoppyGirl · 07/02/2011 00:58

Sorry eddiemccready that's not how it works unfortunately. You will be highly radioactive for the first week. There is a guy/woman who will come into your room each day with a geiger counter and run it over you and the room to read the levels. None of the nurses will come into your room for very long and some even wear special aprons to protect them. Many report numb lips and tingling akin to pins and needles when dealing with radioactive patients. Once your levels have dropped sufficiently using on day 4 you'll be taken out of the room for a full body scan so that they can see where the iodine has been absorbed. Thyroid tissue can migrate around the body you see but it is the only tissue/gland that will absorb iodine. So if it has travelled they'll be able to see it on the scan. Then on day 5 you'll usually go home and come back for a further scan a week or so later. When in hospital food will be left outside your room for you and you'll have use of a microwave to heat it. Plus you'll have two separate toilets to use. One for weeing and one for the other. The radiation leaves the body through your urine you say so it has to be disposed of as radioactive waste! It's quite hard to do the two things separately, but you manage lol Wink

LibraPoppyGirl · 07/02/2011 01:00

Sorry meant to say through your urine you see Smile

Stac2011 · 07/02/2011 01:11

hi, can i join in? I have an underactive thyroid diagnosed after gaing 8st in 2years, doc just thought i was greed even though mum, gran, aunt and uncle all have it. Anyway was on 75mcg upped to 100mcg during last pregnancy but think i need tested again as i'm back to gaining weight and freezing feet (not sure if this is common) going to ask for bloods on friday as dd is now 7months.

Bearskinwoolies · 07/02/2011 01:38

Hi Stac2011, the more the merrier! Smile

I've just been googling B12 deficiency, and it looks as though it could be the cause. As I am also currently flirting with borderline chronic pancreatitis (which also causes B12 deficiency) it all makes sense!

Jammygal · 07/02/2011 12:19

catsmamma Thanks for info on pins and needles ......I have been to doc today as am being driven crazy by it!!! Has your gone away now?
My TSH level was 3.5 back in Sept but doc is retesting next week. Is 3.5 a bit high?
Here range is 3-6 !

I feel crappy , tired, fat, exhausted and chronic pins and needles in feet and hands....almost changing the sensation in my hands and feet! (I can't tell if they are hot or cold!) Any tips anyone (am also anaemic!)

Jammygal · 07/02/2011 12:20

Am on 75mcg btw!!!

eddiemccready · 07/02/2011 12:41

Oh god libra that sounds really hard going. I would find the isolation hard. My dc are still very young. I think I will try and stick out the carbimazole until they are all a bit bigger. Dh is great but I think to leave him with 5 dc for a week he would struggle.

eddiemccready · 07/02/2011 12:43

Libra have you had any eye problems?

sinclair · 07/02/2011 16:42

Libra thanks for posting tho it sounds even worse than i feared. on the plus side i saw my surgeon today and he said there is a huge wait for the radio therapy so it may be after the summer holidays!! First i have to have another op so get that booked in first and then take it from there. i pressed him to get me a date today as last time i waited over 5 months (supposed to be 18 weeks max) and he said he would get me on the list for April. he also said that we are way more stringent here than say in the US where the isolation would be shorter and when he heard that DCs are older (9, 11) he seemed more relaxed generally - the issue is far worse with tinies and of course anyone TTC (way way past that here thankfully)

thanks again sure i will be back love S x

crumbletastic · 07/02/2011 17:35

It must differ for different hospital trusts because my endocrionologist knows I have children he said I obviously didn't want to have radioiodine therapy and would I consider surgery. This is much more preferable to me.

mollymole · 07/02/2011 17:46

i had RAI and did not have to stay in hospital (and apparently I had a high dose) - just had to be careful of close contact i.e
sleep in separate bedroom , keep around a metre between self and others - not travel on public transport for 5 days as may have to sit close to someone
i did not feel crap and had no ill effects at all
hope this helps

eddiemccready · 07/02/2011 21:34

Im supposing the degree of isolation and duration would depend on the dose of rai? There seems to be alot of variation on treatment between consultants and health trusts. My endo said 'you wouldnt want surgery' because risk of damage and that rai was a better option? Now dont know what to think.

EmmaBemma · 07/02/2011 22:20

Hello everyone! I've got Graves' disease, which seems to be triggered by pregnancy for me: it's been two for two so far, each time my thyroid has become overactive in the postpartum months. I recognised the symptoms much earlier this time as I knew what I was looking for and it seems to be well controlled for now on the minimum dose of carbimazole - hoping it'll go into remission in the next couple of months.

My consultant has mentioned RAI or a thyroidectomy but in my case I really feel the cure is worse than the disease... I don't want to not be allowed to go near my daughters for weeks or to have to take thyroxine for the rest of my life. I'd rather take my chances with drug therapy if I have another relapse, which I may well do even though I'm not planning another pregnancy - I'm guessing hormonal changes might be a trigger too.

LibraPoppyGirl · 07/02/2011 22:56

You're welcome sinclair sorry to be a bit of a doom and gloom but I'm just being honest about my experiences.

@mollymole I had the highest dose possible as I had five tumours with two of the three types of thyroid cancer you can get in all of them. The largest of the tumours was 4cm x 5cm (you should have seen the bloody lump hanging out of my neck....yikes). So yes, my experience could well have been a lot more intense due to the severity of my situation. I know that on each occasion the person in the room next to me, who was also having radioisotope was a far far smaller dose than me.

It's all about what you feel you could cope with. When it comes to cancer I would definitely suggest in not hesitating opting for both surgery and rai, purely because surgery does guarantee to remove all of the tumour or thyroid lobes and thyroid tissue does migrate around the body and some of the secondary cancers from thyroid cancer are brain, lung, breast, womb and bone. Bone and brain as secondaries??? Don't even go there. My son was only 8 when I was diagnosed and I felt my only option was to hit the son of bitch with everything they had, I wasn't risking him losing his Mum, no way no how.

If there is no cancer involved however, then I would definitely give medication a good go first and then take it from there.

Hope this helps and keep posting. Smile

LibraPoppyGirl · 07/02/2011 23:02

@eddiemccready sorry hun, I missed your earlier post.

No, no problems with my eyes. When we looked back the first indication that something was wrong was that I kept on losing my voice for no reason. It turns out the tumours were starting to press on my voicebox.

Had I known then, what I know now about the thyroid and how it works and the cancer and how that works within the thyroid gland, it would have been caught a lot earlier. Oh for the luxury of hindsight!!!

My current TSH levels by the way are 0.08. It has to be kept as low as possible so that the cancer cells are suppressed and this is for life I'm afriad.

LibraPoppyGirl · 07/02/2011 23:24

Ooops meant to say in earlier post "purely because surgery does NOT guarantee to remove all of the tumour or thyroid lobes" Smile

Forgive me it's been a long day Wink x

McGinger · 08/02/2011 14:23

sinclair

It has been a few years since I had my treatment but I don't remember being quite as badly effected as LibraPoppyGirl.

I was in isolation for a week, in a room with a TV that didn't work properly and aincient DVD's though.

They allowed me to have visitors but they had to sit on a chair in the hall, behind a waist high (if you were standing) lead screen, I had to sit on my bed to speak to them. When I was brought food by the staff they would leave it by the door and I had to wait until they were gone to go and get it. Now I am not the biggest fan of hospital food so my family brought me other food and would throw it into my room for me!

I was told to shower regularly, as this helps to get rid of the radioactivity. So I showered 3 or 4 times a day, unfortunatley there was no towels in the room so I had to use GIANT paper towel to dry myself.

My top tip to make your stay more comfortable is to take things with you that you do not mind throwing out when you leave.

I would take:

A couple of towels
Comfy clothing
Underwear
A hairbrush
Shower gel
Shampoo
Slippers
Jammies
Hair baubles (if you have long hair)
Magazines and books

I wish someone had suggested that to me when I went in, no-one did all they said was "YOU CANT BRING ANYTHING INTO THE ROOM" and I had to use paper towels to dry myself and during the day I had to wear paper clothes and underwear.

And yes it was a week in hospital, then a week where I was home but not allowed to sleep in the same bed as DH, I was also advised not to allow children to sit on my knee or beside me for an extended time but a quick cuddle was ok. At the time I only had a nephew and I just didn't go to see him till my week was up.

Good luck with it all and if I can answer any more questions just ask.

x