newly diagnosed Graves

[GreenGelfling]

Hello. I am 38 and just been diagnosed with hyperthyroidism due to Graves. I am so frightened for the future and what this is going to do to me and how it will impact my life. The only stories I have found from people suffering with it are horrendous. Is it possible to live a normal life with this condition?

[Buddy195 Administrator]

Welcome to the forum GreenGelfling,

We are a helpful and supportive group and are here to help. Please don’t overdo it on Google….remember worst case scenarios are often featured!

Can you tell us about any adverse symptoms you are experiencing?

Do you have any blood tests to share- TSH, FT3 and FT4 (with ranges in brackets- as these can vary between laboratories)?

Has your GP tested key thyroid vitamins (folate, ferritin, B12 and vit D)?

Has your Graves Disease (hyperthyroidism) confirmed via positive TRab or TSI antibodies?

TRab

TSH receptor antibodies

TSI

Thyroid-Stimulating Immunoglobulin

TPO & TG antibodies may be Graves or Hashimotos.

 TPOab

Thyroid Peroxidase antibodies

TGab

Thyroglobulin antibodies

…. I would 100% push for the correct antibody tests, because I was initially diagnosed as Graves (largely on hyper- like symptoms, plus Thyroid Eye Disease, more commonly associated with Graves) but thanks to members here, I later found I am hypothyroid with Hashimotos.

Keep posting and asking questions- we are here to help! 🦋

[GreenGelfling in reply to Buddy195]

I can’t remember the exact figures from my first blood test, just that they were off the scale so I was urgently put on carbimazole and propranolol before my appointment came through with the endocrine department. The day I was told I had Graves, I had another blood test and my t3 was 13.5 and t4 was 43. This was after 2 weeks of the meds so they told me to double my dose of carbimazole to 40mg/day. For two weeks. They said they know it’s graves because of my antibodies and the antibody levels are “impressively high”.

Symptom wise, they are very mild. I have been loosing weight (but I have been intentionally trying to with a calorie controlled diet and losing 1-1.5 pounds per week). I also developed pulsile tinnitus and occasional mild tremor when sometimes doing delicate work or pushing the clutch down driving.

I have a young child, I am so worried this is going to make me unwell and prevent me from being a good Mum. And then later if they have to remove my thyroid, will I just end up tired all the time, overweight and irritable? No one says it’s ok and they manage normally.

I’ve heard as well that whilst the endocrine department is brilliant, once you get discharged back to the GP they are often dismissive and don’t test properly to see if your hormones are int he right balance.

My eyes have felt dry and naggy since my diagnosis but honestly can’t figure out if it’s my own paranoia about it or beginnings of TED. They didn’t seem worried about it. Going to go for a routine eye test just to get their opinion.

[Buddy195 Administrator in reply to GreenGelfling]

If signs of TED are suspected, I recommend you take a Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed. Preservative free lubricating eye drops are important, such as HycoSan or Hyloforte. If you experience light sensitivity wear sunglasses (even indoors if needed). If you have any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). Also worth doing is using 2 pillows at night, to elevate your head.Above all, please don’t overdo it on Google images, as they show ‘worst case’ scenarios!

[KimKarenCat in reply to GreenGelfling]

I totally relate. My issues started in 2023 got diagnosis in 2024 taking same meds as you but they have reduced to 10mg now and stayed there for a few months now. I'm still waiting to see someone about my eyes so I will also follow the advice given here and hope it helps.

[asiatic]

Your fear is probably coming from entering into unknown territory. Unfortunately no one can tell you how things will develop. You will be given Carbimazole which may quickly alleviate symptoms and when you stop it after 18 months you will find yourself in a lasting remission. On the other hand you may find it takes a lot of adjusting to keep feeling well. Frequently, doctors aren’t as knowledgeable as they should be and your care may fall far short of what you would reasonably expect exacerbating feelings of helplessness. It is therefore advisable to learn all you can about autoimmune thyroid disease while keeping careful notes of your symptoms doses and blood results. Things don’t seem as frightening when you are empowered and knowledgeable. Keep asking questions on here as you navigate your journey and I am sure any problems you may have can be solved as someone on here will have already encountered it.

[pennyannie]

Hello GreenGelfing and welcome to the forum :

Graves is named after the physician who first identified the disease, an Irish man - Robert James Graves - and there is nothing to worry about though Graves tends to be a stress and anxiety driven Auto Immune Disease and understand your concern.

Graves tends to get diagnosed at milestones in some people's lives, such as puberty, child birth and menopause and can be managed with Anti Thyroid drugs long term and for the vast majority of people there is no need for definitive treatment.

It is important that you register for online access to your medical records and have some understanding of your treatment regime and be ale to advocate for yourself.

We do need to know exactly what blood tests have been run, which antibodies found positive and over range in your first set of blood tests - and your initial TSH + T3 + T4 results and ranges.

Graves is an Auto Immune disease and generally only diagnosed when the thyroid and / or eyes become involved and is said to be life threatening if not medicated - and the medication an Anti Thyroid drug - either Carbimazole or Propylthiouracil - PTU :

All the AT drug does is semi- block your new, own, daily thyroid hormone production and slowly your high thyroid hormone levels will start to fall back down into range -

and with regular follow up blood tests every 6-8 weeks - the AT drug is slowly reduced down to follow the drop in your level of thyroid hormones with the aim to get your T3 and T4 back into the ranges -

and then to stay on the least amount of medication needed to maintain your T3/T4 around mid point in the ranges while we wait for your immune system to calm down again.

The AT drug also dampens down your immune system response and just 'buys you time ' while we wait for your immune system to calm back down again.

Obviously your question is why you and why now, and that's the 64 billion $ question - you are the person best placed to kn the answer, if there is one -

There is likely a genetic pre-disposition with maybe a family member a generation away from you with a thyroid health issue and Graves can be triggered by a sudden shock to the system like a car accident or sudden unexpected death of a loved on - or for some people seems to come about simply out of the blue - but everybody's journey with Graves is unique to the individual and probably why its such a poorly understood and badly treated AI disease by mainstream medical.

The NHS generally allocate a treatment window of around 15-18 months with an AT drug - and if remission is not found there maybe some talk off of definitive treatment but if well on the AT drug your treatment can't be stopped, but you maybe transferred back for your doctor to monitor your progress.

We do now have some research you may like to have :-

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

I see you are also taking a beta blocker - Propranolol - this also tends to slow the rate at which the T4 is converted into T3 - as it is the level of T3 that is causing all the horrible symptoms - and this drug, along with the AT drug will be gradually reduced as your thyroid hormones start to fall back down into range.

There can be something of a brain / body mismatch in what you think you should be doing and what physically you are able to do - as your body is totally exhausted and unable to do much at all - and with you finding yourself in ' a heightened state ' -

but hopefully you will start to feel more comfortable once the medication takes effect.

Your TSH has been hi-jacked by the Graves antibodies and will be the very last bio-marker to move, if it ever does -

The Graves antibodies circulating in your blood have got stuck on the TSH receptor sites within your body, and are pushing these fine hair like follicles down which in turn pushes up your thyroid hormone production and with high over range thyroid hormones the symptoms become intolerable. which is why you then go to the doctor and now have a diagnosis and a treatment plan.

The most rounded of all I researched though around 8 years after I had RAI thyroid ablation for Graves back in 2005 is that of Elaine Moore - books and website - which we now need to access via the archived records -

web.archive.org/web/2024122...

[HealthyBefore in reply to pennyannie]

thank you for that penny, very useful. Can I ask how the state of the thyroid fits in to this. I mean if the scan shows its looking very inflammed with nodules or maybe looking not too bad, does this have a direct relationship with the antibody figures or T4/T3 figures? or is there no correlation? Does the thyroid ever recover physically or is always on a downwards projection with Graves?

[pennyannie in reply to HealthyBefore]

As I understand it -

With Graves the antibodies circulating in the blood get stuck on the TSH receptor sites -

pushing down the TSH receptors which in turn push up thyroid hormone production which in turn sees the patient becoming unwell and needing to see a doctor.

All the AT drug does is semi-block and dampen down the immune system response while we wait for this phase of ill health to pass.

For some Graves is just a ' blip ' the AT drug does the job within the time frame allocated - remission is found - and presume their thyroid hormone production reverts back to their normal -

if thyroid function isn't restored I presume these patients find themselves eventually dealing with symptoms of hypothyroidism.

There are also another group of Graves people ' in remission ' who keep some AT drug in the medicine box - more for insurance than anything else - and just and if and when they sense their body needing a little calming down.

Graves carries Blocking, Stimulating and Neutral antibodies - and these interchange as they vie for control of the thyroid -

so Stimulating abs will see very high T3/T4 readings whereas if with Blocking abs dominating you may well see low but likely inverted T3/T4 readings -

but I think if with positive Graves antibodies irrespective of the numbers or where the T3/T4 sit -prescribing an AT drug the first priority since Graves is said to be life threatening if not medicated and the immune system seen as volatile and needing to be controlled.

Those unable to ' find remission ' for various reasons - whether it's because they can't tolerate the AT drugs, or the time frame doesn't work for them, or due to lack of medical expertise or due to the set of antibodies dominating their immune system - are all encouraged to have definitive treatment.

I just think the definitive treatment does not resolve the underlying cause - which is AI - and with the treatment for Primary Hypothyroidism being such a challenge with only 1 of the 3 treatment options now readily available on the NHS - keeping one's thyroid the better option if you can -

I fully accept that for some definitive treatment is necessary and I believe a thyroidectomy a cleaner and more precise option - rather than ingesting a toxic substance that is now known to be linked to certain cancers, amongst other things.

I'm not sure I've answered your question - sorry :

[Aj2690]

Hey! Sorry you’re feeling so worried about this, it can be a shock at first. I was diagnosed with Hashimotos (the opposite to graves but similar symptoms, sadly I put weight on at a rapid rate not lose it 😂) about 3 years ago just after I turned 30 and I had all the same fears you do now. I hadn’t had children yet and my biggest fear was either not getting pregnant or not be able to be a good mum as I’d be so unwell. Well I’m now pregnant and I’ve been managing my symptoms with meds and diet. Hopefully you had a good partner/friend who can support you and I’d suggest informing your work place as it falls under the disability act meaning you’ll be a little more protected (we can take a little more sickness leave than others). You may feel confused for a while, questioning if any old ache and pain is related or perhaps getting anxious (that’s the worse but for me) but you’ll learn to manage and find a way to cope. It’s not a death sentence don’t worry. If you have any questions or concerns always try your doctor but if you don’t get the support you need get this forum instead, there’s a lot of knowledgeable people here. Hope you feel better soon 💓

[JuSa44]

I have a similar problem and, once your thyroid levels are balanced again, you will feel like a new person. You will realize that so many random health problems were related to your thyroid. It is such a powerful little organ that touches every physiological function in the body. Don't despair. I am now on 2.5mg of carbimazole every second day to maintain my levels. I tried to reduce it more, but then I went a bit hyper again. All the best!

[pennyannie in reply to JuSa44]

Is there any chance you can chop the 2.50 Carbimazole into 2 - and take a small dose every day so to dovetail in with your own new daily thyroid hormone production ?

[clivevsmith]

Hi

I'm now 67 and was diagnosed as hyperthyroid when in my early 20's. Whilst everyone is different, carbimazole quickly stabilised my health and I have been fortunate to have no serious health issues since.

I hope it's the same for you and your health settles down quickly, once the correct dosage is achieved.

[GreenGelfling]

Thanks for the replies everyone. I guess I’m just going to have to see how it goes. I’m really anxious about the messing about every time I get a sore throat due to the carbimazole I know the impact on white blood cells is very rare, but sore throats I can guarantee hit throughout the year! Hope it doesn’t happen when I’m on holiday. Does anyone know how long carbimazole can take to flatten your white blood cells? Everything was ok with those from my Monday blood test.