Newly diagnosed with Graves' soon to meet my new Endo any advice would be really great.

[M1zzM4zz]

Hi everyone,

Wow you all seem so informed on all of this, so if you have any advice for me then please fire away.

I have had one full blood test after being so knackered and out of breath 🤷‍♀️

I was just sleeping all day every day And felt like my muscles were as heavy as lead.

Anyway I am here now with Carbozimole 15mg once everyday and now my "levels are back up" docs words not mine.

I'm getting a bit overwhelmed and becoming brain fogged by it all....

So anything I should know? or should find out? or even request? just fire away as I haven't got a clue. I have read a bit but had to stop as it was scaring me a bit.

Thanks 😊

[Lora7again]

You need to request your blood results and post them on here for other members to advise you. Also have a look at Elaine Moore's site she is a Graves' sufferer and started a support site for others with the disease. I think her site is better than this one for anyone who has Graves'.

Here is a link

elaine-moore.com/

Just to add that my Endocrinologist told me to either have my thyroid removed or RAI and I am glad I decided against it because here I am now 10 years later still with my thyroid. You can read my story on my profile page if you are interested.

[PurpleNails]

Often when medics see below range TSH (thyroid stimulating hormone) they conclude a patient has Graves & automatically prescribe carbimazole. This lowers the thyroid hormones free T4 and Free T3 and raises the TSH. The GPs tend to leave the rest to specialist.

Your first step is to obtain your blood test results to see what has and hasn’t been tested.

TSH

FT4

FT3

Hopefully you would also have had your antibodies tested to confirm your diagnosis.

There are 4 different ones:

Thyroid Peroxidase (TPO) and

Thyroglobulin (Tg) are positive in BOTH autoimmune thyroiditis and Graves (higher with hashis)

(thyroiditis / hashimotos can start with transient hyperthyroidism but ultimately results in under active).

Thyroid-Stimulating Immunoglobulin (TSI) and

TSH receptor antibodies (TRAb) are high in those with Graves’ disease (continuous hyper)

It’s also important to test folate, B12, ferritin and vitamin D . These need to be optimal for thyroid and are often overlooked.

Generally carbimazole treatment is given for around 18 months as Graves can go into remission. However it it becoming more common to hear patients are being offered Definitive treatments early on.

NHS first option is Radioactive iodine treatment (RAI) which ablates the thyroid, but if you have contact with young children or have active eye disease, this wouldn’t be suitable & a total thyroidectomy (TT) will be an option.

Some choose to remain on carbimazole at a lower dose long term. I am hyper from another cause but have have been taking it 2 years.

Reading and research can be rather overwhelming at first but it you do a little at a time, and take notes to re read your understanding will develop and you can make an informed choice on your own treatment. Don’t be rushed by doctors.

Start by keeping a diary of symptoms, medications and supplements and getting into habit of obtaining test results and learning how to understand them.

I am usually tested 6 weekly for carbimazole monitoring. Do you have repeat test scheduled?

[M1zzM4zz in reply to PurpleNails]

I was told I should have my bloods tested every six weeks due to the white bloods cells depleting from the current Carb meds.

I feel like this going to be such a long draining process on both my mind and body and do feel more overwhelmed every day....thank you for your response.

Do you hold down full-time jobs? as I feel like my memory and my common sense are slowly depleting along with my white blood cells 🤔

Can I ring my GP and ask for my results?

The diary is a really good idea, I will start that today thank you 😊

[PurpleNails in reply to M1zzM4zz]

Arranging online access to your GP held results is ideal as you are then able to view results (& any letters) without involving doctors and receptionists who can try to be evasive. This can take time to set up, in the mean time contact the surgery reception and obtain an actual print out of results. This will include ranges which vary between labs. Hospital department have secretaries who should provide any hospital held results. They do sometimes try to delay by saying they need to check with doctor or ask why, I was once challenged as to would I understand them ...simply say they are for your records. You are legally entitled to them.

Making notes of anything you need to discuss with your doctor is also really good idea. If I don’t list a few priority comments I end up saying I’m all fine!

Carbimazole doesn’t reduce white cells in everyone but it can rarely trigger a serious side affect where this does happens, (treatment must cease if it occurs) NHS doesn’t routinely monitor (but it good if they are for you). I’m advised to be vigilant for signs and then tested. (FBC) full blood count need to be checked urgently if you develop mouth ulcers or sore throat, unusual bruising. You should have been given a patient information leaflet regarding this, (when pharmacies dispenses the medication) make sure you read it carefully and keep it to hand to refer to.

I am a busy mum to 2 children both with learning difficulties & a rare heart condition & I also work part-time. My energy & motivation was very low around diagnosis (hyper from nodule) but Im feeling much improved although I believe my thyroid levels are currently a little too low. I’m waiting on a 3rd cancelled specialist appointment & hoping to agree to a dose reduction.

[Lora7again]

I would find out if your Endocrinologist specializes in Thyroid disease because a lot of them specialize in Diabetes.

[pennyannie]

Hello MizzM4zz and welcome to the forum :

Graves is one of two auto immune thyroid diseases and both attack the thyroid, and it is because the thyroid is such a major, important gland, that Graves is considered life threatening if not treated.

There is also Hashimoto's Disease that initially presents in exactly the same way as Graves, so it is imperative that you get the medical evidence that the anti bodies that are unique to Graves are positive and are over range and these are generally written as either TSI ( roughly translated as a thyroid stimulating ) and or a TR ab ( roughly translated as a blocking ) antibody.

Graves is constant overactivity and is treated with an anti thyroid drug such as Carbimazole.

Hashimoto's is transient hyperactivity and the gland recovers without medication, but the more attacks, the more damage to the gland and ultimately production of thyroid hormones becomes erratic and hypothyroidism creeps in with its insidious list of symptoms.

With Graves once on the anti thyroid drug your own thyroid production is blocked so your symptoms should start to reduce with your feeling more comfortable. However, this is a fine balance, and suggest you read up on all the symptoms of both hyperactive and underactive thyroid so to recognise where you are in this phase of the disease.

The NHS generally allocate a 15-18 month window on the AT medication with a view that if " you can't find remission " they suggest you either have the gland ablated and burnt out in situ with Radioactive Iodine or have your throat slit open and the gland removed. So yes the options aren't great, either drink a toxic substance or have your throat slip open !!!!

Sadly the NHS do not know how to control or reduce the autoimmune component of this disease so suggest these drastic measures as the treatment options, which ultimately solves the initially thoughts of Graves being a " life threatening disease " and discharges you back out into primary care but with the life long complications of living life without a thyroid and needing treatment for life long hypothyroidism.

However there is a third option which is to keep the gland and stay on the AT medication :

Graves is an AI disease that just happens to attack to the thyroid - the thyroid is a victim in all this and not the cause as the cause is your immune system mistakenly attacking your body.

Loosing such a major gland to an AI disease is something not to enter into lightly.

You can read more on the Thyroid uk website who are the charity who support this amazing forum :

Elaine Moore is another excellent adjunct and has researched extensively on the AI component of this poorly understood and badly treated AI disease and what you can do for yourself to control and reduce the Graves antibody interaction.

I'm with Graves and post RAI thyroid ablation in 2005 and became very unwell in around 2014 : After about 2 years of relying on the NHS to help me with no resolve, I thought maybe that Graves I had back in 2003 had come back and purchased Elaine Moore's first book and read that it never really went away, !!!I then found the Thyroid uk and have managed to turn things around myself.

My initial symptoms were exhaustion, insomnia and dry gritty eyes, I worked whilst on the Carbimazole and was well, but told it was too dangerous a drug to stay on long term and given no option and told I was to have RAI : I knew no better, and was totally compliant, and just wish I knew then what I do now.

You have time on your side and so much information that you will feel overwhelmed, but just take a bit of time and things will fall into place.

Graves is said to be a stress and anxiety driven AI disease so rest when you can, be selfish with yourself and do stuff you enjoy and be kind to yourself.

I now self medicate on full spectrum thyroid hormone replacement which I have to buy myself as generally it seems the NHS prescribe just one thyroid hormone despite having lost the thyroid gland that produces a measurable amount of two thyroid hormones, T3 and T4 that are widely prescribed and available in other countries around the world.

[M1zzM4zz]

Thank you all so very much! Sorry had a bad couple of days feeling a bit lost...

I really appreciate all your effort and well informed replies ❤

p.s

If I am already taking ferrous sulphate for aneamia would I be correct in saying the home testing would also pick up my iron levels?

Our well informed (soon to be a qualified Doctor, nurse and a results analyst) receptionist says "everything is fine with iron" when I asked for a more detailed result the nurse said I am 2.0 or 20 which ever the way it is read, so if I was to drop one, I would be borderline again and need new intake which I can easily do as I have them on prescription. I usually have highs and lows with iron so this is normal for me.

Hope that makes sense and I will get there with all the tests, results and vitamin intake I hope 🤞😊

[PurpleNails in reply to M1zzM4zz]

Which home test were you planning? Was it one recommend on here?

2.0 or 20 is meaningless I’m afraid. What exactly was tested, sometimes the unit used is different and as labs ranges vary we need to know was that is.

Sound like they being evasive with your results. It seems to be an automatic stance at many practices. Be persistent. Phone reception ahead of time, say you require a print out of your results. If they want to minimise visitors will they post them? or can you collect Monday...(allow a day or two).

Does your practice offer online access?

Start new post with results, as might get missed at end of older thread.

[M1zzM4zz in reply to PurpleNails]

I have sorted my online access for files and results and then had to re-request the results as they took this off and was unable to view any of my own results! So I have done it via the NHS website and provided all my identity documentation and NHS number etc and I am just waiting now. I have also ordered the extra vitamins that have been listed on here and began my own mindfulness/symptom diary kindly sent through as a gift from my husband who is in Africa working atm so was well happy with myself and my hubby for caring and also my new gift. I have also been looking at the home tests too but I will leave that for a different day 😊

You are all so kind and helpful and have eased me into the most mind-blowing, scariest time of my life.

So yes you were right it can be broken down into smaller chunk's for brain foggers like me.

Thank you from the bottom of my heart ❤