I am a 29 year old female with Graves Disease and have recently been diagnosed with a thyroid nodule with a-typical cells. I have previously had thyroid eye disease when first diagnosed 4 years ago although this appears okay now. I have experienced 2 relapses, however I am currently on 5mg carbimozole alternate days and have good blood tests (aka do not need to be taking carbimozole currently).
My consultant has told me that my only option is for full thyroid removal. Due to previous eye disease I have been advised i cannot have radioactive iodine, the nodule needs to be removed regardless (a-typical) and I have been told I cannot have a partial thyroid removal due to the risks of later replases and scar tissue from multiple operations.
However, I am terrified that I am going to feel more unwell following surgery as I feel very well at present. I am scared to put weight on and feel trapped to make a decision quickly because of the nodule. My consultant has also said if I wish to have children in the near future then surgery is the best option.
Any advice would be so so so appreciated - I feel so overwhelmed!
Written by
Greggors
To view profiles and participate in discussions please or .
Difficult situation, but given the factors, Graves relapses, nodules, TED history & family plans - I can see why the consultant has suggested total thyroidectomy.
Ultimately you have to be comfortable with how to proceed, but the pressure doctors apply does not help lower how overwhelmed you understandably must be.
What are your current levels like? You say you are not well & do don’t currently need carbimazole (or replacement?) but what is this based on? If drs are focusing on TSH levels, it might now be telling you the whole story.
For full results you need current TSH, FT4, FT3. folate, ferritin, B12 & vitamin D.
With Graves diagnosis you would have prior confirmation with correct thyroid antibodies. Which were tested? TPO, TG, TRab & TSI. Plus coeliac screen.
You are entitled to copies / access to all blood test results & scan reports. Do you have online access available or printed copies with lab ranges?
Very important nutrients are tested prior to any surgery, often lower after surgery & optimal nutrients important help convert T4 to T3. In range in not same as optimal.
Most do very well after thyroidectomy & manage on mainstream treatment of replacement Levo. Some struggle with levels / conversion but that’s a lesser proportion. Being prepared to track & understand levels & advocate for your ideal treatment will mean you are in the best position before surgery to adjust the thyroid replacement treatment.
It is a difficult time and there is no quick fix solution for Graves which is an Auto Immune disease for which there is no cure, and which can wax and wane throughout one's life with stress and anxiety seen as common triggers.
Were it not for nodule and the advice to have surgery I presume you would have continued on as you were :
I'm not sure if you re still taking 5 mcg Carbimazole every other day - if so why not chop this dose in half and take 2.50 mcg each day thereby dovetailing in with your own body's natural. daily thyroid hormone production.
Good to read you are feeling well - so just for reference have your T3 and T4 levels run -
so if you go ahead with surgery you have some idea where in the ranges you know where your T3 and T4 need to be when/ if taking thyroid hormone replacement.
The most widely prescribed successful treatment is T4 - Levothyroxine - which is a pro-hormone and needs to be converted in your body into T3 the active hormone that runs the body much like fuel runs a car -
with your heart being the main engine and the thyroid like the gear box - responsible for full body synchronisation from your physical ability and stamina through your mental, emotional, psychological and spiritual well being your inner central heating system and your metabolism.
No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal levels - and these main co-factors are ferritin, folate, B12 and vitamin D .
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitinon + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg. -
with T3 - the active hormone said to be around 4 times more powerful than T4 - the pro-hormone.
Some people can get by on T4 only medication.
others find that T4 seems to stop being as effective as it once was and that by adding in a little T3 - probably at a similar level to that their thyroid once supported them with - they are able to restore their T3/T4 hormonal balance better and feel improved.
Others can't tolerate T4 and need to take T3 only - Liothyronine - as you can live without T4 but you can't live without T4.
whilst others feel best taking Natural Desiccated Thyroid which contains all the same known hormones as the human gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.
I found Elaine Moore's books and website the most complete of all I researched for Graves - so if this a new name for you - elaine-moore.com -
I think the section on holistic and alternative treatment options of interest - though I only found Elaine - 10 years after I had RAI thyroid ablation for Graves - and much more unwell and having to research for myself - as seen as a conundrum by the NHS.
Hi! I've just joined and came across your post by searching "nodule and graves".
I can't offer you advice I'm afraid but I thought it might bring you some comfort to hear from someone in a similar situation as I've found so many of peoples stories of graves or nodules separately, but very rarely find any of both.
A blood test picked up that I had an overactive thyroid back in April and various tests and scans later, I've been told I'm one of the awkward ones with both a toxic nodule AND graves disease so I have also been recommended a total thyroidectomy.
Like you, I'm terrified!
Also like you, I'm worried about feeling worse after surgery because I feel quite well at the moment. I've been pretty lucky not to have felt too poorly with it. I'm currently taking 5mg carbimazole but a recent blood test suggests I've been overcorrected and I'm now underactive so I'm waiting to hear back from the endocrinologists about whether I need to stop taking it (they're a nightmare to get hold of!)
Initially they thought a toxic nodule was causing my hyperthyroidism so I was recommended RAI but I quickly ruled that out. What I read about it didn't sit well with me and as it would mean being away from my 3 year old boy for 3-4 weeks and not getting pregnant again for a long time after, I just couldn't consider it. I'm 38 so time isn't really on my side and I'm still hopeful I can have another child.
Then in a thyroid uptake scan, Graves Disease made itself known so RAI was no longer the recommendation as I would still need treating for Graves, so I was instead told that surgery was the best option for me.
After lots and lots of research, I do think they're right and feel reassured that I'll be in safe hands but I'm still incredibly nervous about the surgery, the recovery and how I'll feel after. It like you say, very overwhelming!
I'm expecting the call for surgery any day now so I'm nervously researching other people's experiences.
Best of luck to you and if you'd like to hear how I get on, I'm more than happy to share it with you if you think it might be helpful. We can go through it together
Thank you so much everyone for such thoughtful and detailed responses - I really appreciate the time and thought you would have put into that! I'm going to see my consultant tomorrow as they have now had their MDT meeting. Thanks to you all I'm going to ask for sight of my blood test results and will also consider booking a private appt to see if there are any alternative options that the NHS won't provide. It's so wonderful to know I'm not the only one out there with the graves/a-typical nodule combination - it can often feel quite lonely!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Large thyroid nodule - surgery/ alternatives?
Multi nodule Goitre, Symptoms and Thyroidectomy 
Graves disease and ongoing heart concerns
Graves' disease and plummers disease??
Do I have Graves disease?
