Thyroidectomy

[tamina786]

Hello I need advise I had grave disease and had near total thyroidectomy, but since that I feel awful on thyroxine , could my remaining tissue reacting

[Lalatoot]

It could be that you are not on the correct dose or that your vitamins are low or that you are not converting the t4 well. We need blood results and ranges to be able to help.

[tamina786 in reply to Lalatoot]

Thank you will get them done and up load results

[pennyannie]

Hello Tamina

Graves is an autoimmune disease and as such, it's for life, it's in your blood and DNA and you need to understand that there is currently no cure. There is probably some genetic predisposition, probably a generation away from you, and it can be triggered by a sudden shock to the system, like a car accident or an unexpected death of someone close to you.

The thyroid is a major gland responsible for your whole body synchronisation, your physical, mental, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism.

The thyroid is not the cause of your illness but the victim of an attack by your own immune system mistakenly attacking your body, rather than protecting your body, and when your Graves attacks your thyroid the symptoms experienced can do diverse, frightening, and some referred to as life threatening.

The NHS do not know how to control your Graves Disease so manage the symptoms with either anti thyroid drugs to block your own over production and generally this treatment is for 15-18 months at which time, if you are still very unwell, surgery or RAI ablation are suggested to kill off or remove the thyroid, thereby rendering the patient thyroid less, and hypothyroid.

The NHS first line treatment for hypothyroidism is Levothyroxine - T4.

A fully functioning working thyroid would be supporting you T1,T2,T3,T4 and calcitonin.

Levothyroxine needs to be converted by your body into T3 and if your ferritin, folate, B12 and vitamin D are not optimum in the ranges, your conversion can be compromised, and no thyroid hormone replacement will work effectively within your body.

In the first instance suggest you arrange a full thyroid blood panel to include, a TSH,T3 and T4 plus the vitamins and minerals as mentioned above.

If your doctor will not help you with this request there are private companies on the Thyroid uk website, Medichecks and Blue Horizon, being the main two, who will even come to your house to take your blood sample.

Once with these results please start a new post including the ranges, and people better able than me will advise on your next steps back to better health.

You might like to start looking at the Elaine Moore Graves Disease Foundation website:

This lady has the disease and is a medical researcher and runs a very well respected platform on all things Graves for all Graves patients.

Your Thyroid and How To Keep It healthy is written by a doctor who has hypothyroidism.

Barry Durrant - Peatfield writes in an easy to understand way and though we haven't now this amazing little gland, we do need to know what it did so we can try and compensate accordingly.

I am with Graves Disease - diagnosed in 2003 and had RAI thyroid ablation in 2005 - a treatment I deeply regret, but sadly, I've had to learn of my situation back to front, and only started my learning curve when I became seriously unwell, some 6 years ago.

[tamina786 in reply to pennyannie]

Thank you so much I'm question is that I had near thyroidectomy can the remaining tissue reacting cause on levothyroxine and having no joy so unwell

[pennyannie in reply to tamina786]

I understand I haven't answered your question on your surgery, I'm not a doctor but a ordinary person living with Graves after RAI.

I do not know what proportion of your gland is left, your details are very limited.

If you action the blood tests as detailed, and furnish the forum with more information, we can respond with logic and proved evidence based answers.

[tamina786 in reply to pennyannie]

Thanks so if you had RAI for graves you should be on levothyroxine, but I'm so unwell on levothyroxine when increase my dose my t4 goes high but t3 below range , and I'm so stressed and unwell , I'm 58kg and if I want to take t3 with t4 what will be the ratio

[pennyannie in reply to tamina786]

Whether you have had RAI or a part/full thyroidectomy without current blood tests detailing the TSH,T3,T4, ferritin, folate, B12 and vitamin D - how can anyone make a considered opinion on what you next need to do ?

I've read what you have written, I understand you are not well, vulnerable and probably scared - there is no point starting T3 until your body is strong and able to utilise this powerful hormone - as otherwise you might make yourself more ill.

There is a discounted blood test on Medicheck today - Thyroid check UltraVit -

If you can arrange it, this will be the first step into getting answers to your question.

[tamina786 in reply to pennyannie]

Thanks alot I will do that

[tamina786 in reply to pennyannie]

All my tests are fine just tsh t4 t3 not good , when I take levothyroxine it builds up in my system and t4 high but t3 always low end , also my tsh is suppressed , I've been having these problems for 3 years on 75 mcg levothyroxine t4 is low end normal and on 100 mcg t4 high but tsh suppressed but t3 low

[tamina786 in reply to pennyannie]

I know I'm not converting

[Hidden in reply to tamina786]

"on 100 mcg t4 high but tsh suppressed but t3 low "

What are your actual results? If T4 is not over top of range you could try an increase. But as you said you are not converting well. Some T3 would be best, but not easy to get through NHS If you decide to go private you can make another post asking people to private message as we are not allowed to post details of suppliers.

I have been thinking of trying Metavive. It is thyroid extract (contains all the thyroid hormones) but sold as a food supplement so can be bought without prescription. The problem is that because it's not medicine they are not allowed to tell you how much thyroid hormone is present, and different batches might have different amounts. But I think it's worth a try if you can't get the help you need through the NHS.

TSH often gets suppressed when we take thyroxine, and especially with T3, but unless it's very low (less than 0.04 I think Dr Toft said) it isn't a problem.

[pennyannie in reply to tamina786]

Well, blood test will tell the full story and we'll have a starting point to work from, and this is where I was a couple of years ago.

Follow the guidance regarding when to take the blood : from memory you need a 9.00 am'ish appointment and it should be fasting overnight, just taking in water, leaving breakfast until after the draw and do not take your Levothyroxine before the test :

There is much information on the Thyroid uk website as well as those already mentioned. It is a massive learning curve, so don't stress and just do a little at a time, even just reading up on this rolling forum is informative and helps understanding.

[Batty1 in reply to pennyannie]

Pennyannie, since you were hyper and now hypo did you gain weight? Curious.

[pennyannie in reply to Batty1]

Hey there Batty

Well, I have always been overweight - being almost 6 ' with size 9 shoes and if lucky

' just ' a dress size 18-20.

When Diagnosed with Graves 2003 I started loosing weight going down about 2 sizes :

After RAI dosed with Levothyroxine and put weight back on back to 18-20 :

Levothyroxine is known to increase weight:

I became very unwell some 8 years after RAI with what I believe were the consequences of taking this toxic substance - I believe my whole mucous membrane system was damaged - the nose, ears, eyes and mouth were obvious to me, and on having an aborted endoscopy because of my ' no saliva issues ' ( I did say ) a colonoscopy I realised my pain was also in my bowel.

In 2016 at the insistence of my dentist I pushed my doctor to refer me for possible Sjogren's Syndrome I spent 18 months going around various hospital departments trying to find some answers, but all I got was a diagnosis of low ferritin.

I lost weight then as I wasn't eating properly - I was still on Levothyroxine and unable to tolerate the iron tablets but refused an infusion. I probably dropped another dress size.

Basically housebound I started to search low ferritin, and found this site and Elaine Moore's book, Graves Disease A Practical Guide. and started to join up dots myself.

I don't think RAI is a sensible solution to any autoimmune disease.

Having been managed so that my TSH stayed ' in the range ' made me very ill:

When I was with a suppressed TSH I functioned ok : but wasn't allowed to stay there:

I now know I need to be kept suppressed to be well and function.

I'm now in my second year self medicating with NDT and my weight is stable - guess I'm back at about an 18 - but the over riding issues is one of being well, having my brain function and slowly other health issues have improved - it has come at a big cost, least of all having to loose about 15 teeth and having a bridge fitted in my bottom front jaw.

Sorry, I've gone on a bit Batty, but you touched a nerve, as it's been an horrendous situation and not one NHS department would acknowledge what I was going through.

The final straw came when I was refused a trial of T3 and dismissed for trying to ask about NDT - I was referred to as a conundrum and since then I've gone my own way.

[Batty1 in reply to pennyannie]

Your tall...lucky girl! The whole weighty issue with thyroid is hard on all of us some more then others.

I developed Psoriatic Arthritis on top of the thyroidectomy nightmare and it still rubs me wrong too.