waiting for surgery

[Chara87]

hi all,

Just an update from my last post. After going to a different a&e they admitted me straight away and said I needed surgery. I had a two week stay and they tried steroid to try and get my thyroid levels down which did not even touch the sides. I am on an my tube which I have been sent home with due to not being able to eat. They said I can try but only a soft diet for now which is not enough for my high metabolism.

When I finally met the surgeon he said that my thyroid area is extremely vascular? Not sure what that meant. He said that if he try’s to operate I will bleed a lot or head straight into a thyroid storm. They are giving me this iodine drink for two weeks before the surgery to block my thyroid functioning. Just waiting on a date now they said up to 8 weeks.

I also want to thank everyone on here for their advice during this difficult time xx

[PurpleNails Administrator]

sounds horrendous, hope you feel better soon.

Do you have liquid nutrition? High energy feed still not helping? 

Steroid will help with inflammation but not thyroid levels. 

 The thyroid is a vascular gland.  Lugols iodine is given to reduce blood flow.  Will it be a daily drink?

 I’m assuming it’s not the radioactive sort, as your levels are not under control.

8 weeks seems like a long time.

Have full function & nutrients tested prior to surgery as a bench mark for post surgery. 

Try to relax as much as possible & try not worry, difficult I know.

[Chara87 in reply to PurpleNails]

they tested all my levels and I needed all sorts of supplements as it was the first time this has been done since my diagnosis. He said up to 5 of these drinks in a 2 weeks period. The stay was good the saw my t4 go from 78 to 86. On top of that PTU has significantly damaged my liver and bone marrow. I am on 3 calcium shots a day and my 1000 ml feed plus 2 fortisips nutrition drinks and I’m still dropping weight. I know I thought that also but I guess he must be busy x

[Jazzw]

Vascular means lots of blood vessels in the area. So there’s potential for more bleeding than normal, as you’ve already guessed. I wish they wouldn’t assume that people automatically understand what they mean.

Sending you gentle hugs. Really hope you don’t have to wait too long x

[Chara87]

I know I waited for 2 weeks for a 5 minute visit from him and off he went 😂. I did manage to get the my tube though and I was quite weak when I went in so Atleast there’s that x thank you x

[tattybogle]

Thanks for the update Chara... crikey ~ all very scary/serious stuff ... do keep in touch if you have any concerns and let us know how you go xx best wishes

[Chara87 in reply to tattybogle]

thank you xx

[pennyannie]

Hey there Chara :

Thanks for the update -

Look after yourself and we will be around to put you back together again !!

[Chara87 in reply to pennyannie]

Thank you very much x

[Cavapoochonowner]

Hello there, Sorry you've been so unwell but now there is a light at the end of the tunnel for you.I had a thyroidectomy for graves disease last June and feel so much better now.I have documented it on my profile(well my whole journey with graves).It is a bit of a long read but if you have time to look you might get some reassurance.You just need to click on the picture at the side of my name and it is there.I too took the iodine drink(lugols iodine) before my operation.Wishing you lots of luck and best wishes on your road to recovery.

[Chara87 in reply to Cavapoochonowner]

iI have a read thank you very much thats a relief to hear. Do you have a picture of the scar? I work with people with severe mental health issues and im concerned it will be triggering x

[Cavapoochonowner in reply to Chara87]

I'm glad you found it helpful.I'm sorry I don't know how to put a picture on here.I'm only a basic level where phones and computers are concerned.I will say it is quite shocking to look at straight after the operation.It is obviously in a very prominent place and has a drain in, but looking after the wound carefully it improves in no time.Mine now approx 8 months later is a pale pink line.It could be possible for you to cover the scar with maybe a high neck or polo neck after it has healed sufficiently or maybe a silk or chiffon scarf if the weather is warmer.This should hide the scar so it doesn't cause any problems for your patients.I have absolutely no regrets about my operation and as long as you are kind to yourself and give your body time to recover I'm sure it will be a great success for you too.Best wishes.

[DoeStewart]

Oh goodness you have had an awful time, thankfully you are now getting the treatment you obviously need. I was also given steroids amongst everything else to try and help my thyroid slow down but they didn't work. I too got the iodine drink for 2 full weeks, every day, before my surgery, tasted a bit yak but knew I had to drink it anyway. Hope your surgery goes well and please keep us updated with how you are doing. All my best wishes for better health.

[Chara87 in reply to DoeStewart]

thank you very much i will be glad when its all over x

[DoeStewart in reply to Chara87]

Totally understand that feeling. I was also advised to buy a tube of pure lanolin for the scar. I had staples in the wound which were removed half after 3 days, other half after 4 days. I then used to massage the lanolin into the scar a few times a day. My scar, considering it is quite big, can't really be seen, it is totally flat, I have to point it out to people who ask where it is. I'm sure people have other products that they used bit that was what helped me. It also took away the tightness of the scar. The recovery from the operation is quite quick, I had a terrible sore throat the first day and then gradually just felt better. I only take Levothyroxine and have done for 35 years, on the whole it works for me 90% of the time but I know so much more about the thyroid from this forum than I have ever been told from medical professionals.

[arTistapple]

Just sending a quiet hand hold.

[NIKEGIRL]

hi. I had a thyroidectomy 10 weeks ago. I was given the Lugols iodine (15 drops a day 5 x 3) to reduce the vascularity (volume of blood) to the thyroid. When I had my surgery the notes said “significant superficial bleeding”. All that means is there was a lot of blood at the top level of the neck around the small goitre I had. Nothing dramatic. So the Lugols iodine is used to stop large amounts of blood to the thyroid and also what it does is make the thyroid more of a “solid structure” because the thyroid when it is attacked constantly becomes a “sticky gloopy gland” so the iodine helps to give the thyroid gland some structure. Nothing sinister. I had severe Graves’ disease and I was put on a string course of PTU and I went under the blood ranges to reduce the changes of thyroid storm. Sorry you r having such an awful time. I do not regret my surgery. It was the right decision for me. I am very calm now internally and as a human being. I’m having a few troubles post surgery but am working on my medication and holding drs accountable so I get the best outcome for myself.

[Chara87 in reply to NIKEGIRL]

Thank you very much for your comment much more detail than iI have had from any medical professional. Im glad to hear you dont regret it. Do you mind telling me what issues you are having post surgery? Thank you

[NIKEGIRL in reply to Chara87]

I had severe graves. T4 over 100 range 10-22 and I was t3 dominant so for 60% of the t4 as t3 so t3 was 59 range 2.5-6.0. I could not get on with carbimazole so had PTU and then because I was t3 dominant tried for block and replace by which time I had burnt out and did surgery. I attempted suicide on 3 occassions so surgery saves my life because I was very self destructive. Post surgery I am having conversion issues of t4 to t3. I’m now on 200mcgs of levothyroxine for 4 weeks while I await a reply from the dr to the Endo about wanting NDT. I want NDT. I am advocating for it based on poor conversion from week 4 post surgery. So from surgery I did 150mcgs of levo for 4 weeks and then week 4 to week 10 did 175mcgs of levo and my blood went down slightly so now I am being asked to do 200mcg of levo from week 10 to week 14. I am getting the levothyroxine in my body at between 80% at week 4 down to 60% at week 10. And then my t3 is converting poorly at week 4 at 11% and week 10 just 8%. So I want NDT and that I what I have said. I told gp I had lost faith in the levothyroxine to restore my health and I want NDT. It is a legal avenue of treatment here in New Zealand and I would like to try it.