Feeling low...families that don't understand.

[Hazyp]

I've been diagnosed with a multi nodular goiter, hyperthyroid and have just had my first endo appointment and another on 1st April, and I am being advised to have RAI.

I'm ok with that...not too happy about having to keep away from my husband and children...and my Mother came round yesterday, and I'm feeling upset about her reaction.

I've kept her updated about whats happening and going to happen, and yesterday I showed her the letter from my Doctor the infomation about the hospital...its a cancer hospital too, which worries me...is a multi nodular goitre classed as a cancer?

My Mum was quite dismissive about my illness and said she'd had a long converation with my sister in law, who 'used to be a cancer nurse'...and they have both decided I just have anxiety!!

I tried telling her that although i was anxious, it was because of the illness and not 'just anxiety' as she put it.

I ended up by having to walk out of the room in tears...she just wouldnt listen to me...

Sorry, I dont want to moan or feel sorry for myself, but I have been feeling so ill lately, and have to put on a brave face to everyone, when I really just want to cry! I'm still going to work full time, in fact I've taken a couple of days of for some 'me' time...just to go shopping and to be able to rest when I'm tired.

I just wish I was understood ...I feel like its just me going through this, I dont know anyone with the same problems as me..and its only when I read this forum that I realise there are lots of us out there...

Has anyone else had problems with families that don't really understand?

thanks for listening.

Hazel

[blsdnsvd]

If in fact, you are diagnosed w/grave's disease....there is still a chance that the nodule's can turn to or are cancerous. The only way to determine this is through a fna (fine needle biopsy) of the nodules.

Yes, studies show that only 5% of nodules are cancerous, however you need to know this.

I suggest that you question as i said in my previous post: What is to be done about the nodules.

[Hazyp]

Thanks Redheadaussie!

So..if radio iodine is not the usual treatment for multi nodular, then what would be the usual treatment?

What I want to do is on my next appointment 1st April take along a few questions, and this forum is certainly helping me!

Many thanks to you all!

Hazel

[redheadaussie]

Hey Hazel, I feel your pain. First of all let me tell you Multinodular goitre is just another name for a lumpy bumpy thyroid. Many many many people have this and it is NOT cancer!  Only if you have a fine needle biopsy done and one of the nodules comes up as something odd, is it then even remotely thought of as cancer.
  The fact your endo is suggesting the radio iodine thereapy seems that she is leaning toward Grave's disease. But you would have to be pretty hyperthyroid for that. It is not the usual for a multinodular goitre.
   My mother too, dismisses anything I ever mention about my fears, worries etc, health wise or otherwise! So I can understand your pain.Sometimes it would be nice just to be like a little kid and get a hug from our mothers, but some mothers just can't seem to deal with their own emotions.
   Hang in there!

[Hazyp]

My Endo didnt seem to think I had Graves Disease, she did take some bloods as I have been having eye problems, but in her follow up letter to me she said my conjunctiva was slightly extended but i have normal eye movements. She said the thryoid is enlarged and extends retrosternall and my scan shows multinodular disease and she recommends radio iodine therapy.

[blsdnsvd]

What's important to know is: What was your diagnosis..."Graves Disease", Hyperthyroidism, or just "Thyroid Goiter????

The symptoms for Graves Disease will include "hyperthyoid" and a goiter may develop due to the overactive thyroid caused by the disease.

Nodules are "masses" within the Goiter and should be biopsied to rule out cancer.

Your question to your doc should be...what is the purpose of the RAI and what is to be done about the nodules?????

[Hazyp]

No, I havent had a biopsy, just the rai scan which indicated the nodules.

Will the RAi not make the goiter go away? What treatment do you think I should be having if it wont make it go away?

I'm getting very concerned..if I have the RAI and it makes the hyper symptoms go, then what happens to the thyroid?

Totie...what do you mean by being dxd with hyper/graves?

How long do you think it will take to get this sorted?

Sorry for firing questions...I just dont know what to do.


Hazel

[blsdnsvd]

YES...No one, (accept doctors) will understand what you are going through unless they are or have been in your shoes. I barely discuss issues with my family unless it is necessary. I too have suffered from anxiety in the past and my own sister has told me that "nothing is wrong"....and trust me, the Lord had to hold me back..LOL.

Don't get yourself excited over what they say or don't say, including "mom"...just show her the diagnosis and leave it at that. Goiter can and will cause thyroid problems whether hyper or hypo.

This endo wants to destroy the thyroid in hopes that your hyper symptoms will go away, however a multinodular goiter will not. I certainly suggest that you seek a second opinion at least.

Do you have any results from a sonogram or fine needle biopsy of the nodule's???

[Totie]

Sorry, wish I could help you.  Your emotions are running wild due to your thyroid problem. I did RAI, for my goiter at a cancer hospital as well. It does not mean you have cancer, NOW there is a chance it could be. I ended up with a TT, the RAI did not work on me. I was dxd with hyper/graves/goiter.

What did the Endo say? Is the RAI to reduce the goiter?

Sometimes are loved ones or friends are dismissive because they do not want you worrying more than you are now. They act like its no big deal to avoid the talking about it. Now your husband is the one that needs to comfort you most.

It really is your emotions/hormones running all over the place, but rightly so with thyroid issues. Be warned, this is just the begining on a long journey to trying to get back to normal. You will feel a lot better with the proper treatment agreed upon between you and your endo.