What were your symptoms and how were your conditions diagnosed? 

In the summer of 2018, I felt weak and out of breath initially, with swollen ankles and puffy, protruding eyes. After a blood test from my GP in October of the same year, I was diagnosed with an overactive thyroid and then later with Graves’ disease. The hot nodule* was discovered after this during a thyroid scan. My Thyroid Eye Disease (TED) symptoms appeared in August 2019. It all felt quite frightening.

Had you heard about thyroid issues prior to diagnosis?

I'd heard the term Graves’ disease and about people having goitres but knew nothing more about thyroid disease than that.

What has your treatment involved?

I was put on carbimazole in October 2018 to treat the Graves’ disease. I remained on this until the end of 2019 when my thyroid levels were normal again. I continued in remission until September 2021 when my I was put back on carbimazole for two months. I had a partial thyroidectomy to remove my hot nodule in October 2021 (because the scan showed it may be malignant – but it wasn’t) and I have been in remission since then. I had TED for about two years. I was not treated for this as it burnt out by itself.

Are you in remission now?

The doctors have said the Graves’ could come back at any time, but the longer I am in remission (now 20 months) the better the chances are of it not returning. My endocrinologist tells me she thinks (but is not sure) that the Graves’ is an autoimmune problem whereas the hot nodule was not – i.e. the two conditions sat side by side. She’s not entirely clear about how one affects the other, but removing the hot nodule certainly helped me.

What have you found the most difficult aspect of living with hyperthyroidism and TED and the subsequent thyroid acropachy and pretibial myxoedema?

The carbimazole made me feel awful - almost worse than the disease. But it got my Graves’ symptoms under control fairly quickly. The thyroid acropachy** and pretibial myxoedema*** have been the worst part of it as the medical profession has no cure and knows very little about these conditions.

My symptoms of thyroid acropachy and pretibial myxoedema include swelling (mainly in my hands, knees, calves, ankles, feet and toes). This swelling presses against nerves, which makes movement very painful and the swollen areas very sensitive to any sort of touch. Other symptoms include muscle loss and muscle aches, particularly in the neck, arms and shoulders. The pretibial myxoedema also causes skin changes, such as red/purple patches and rough, dry, pitted skin. I spent a year not being able to walk because of them and still find walking extremely painful and difficult.

How has this impacted your home and work life?

For about two years I couldn't do basic things like standing up to cook, lift food to my mouth easily, wash up or make a bed. All my muscles broke down (including those in my throat, which made me choke a lot). I still find moving very hard today, especially going up and down stairs. Luckily, I work from home, so I could carry on doing that quite easily.

Were you able to access any support?

I was referred to a dermatologist who confirmed the pretibial myxoedema diagnosis. I was given a steroid injection which didn't help much, but other than that I wasn't offered anything. Over the last few years, I have seen endocrinologists, rheumatologists, a dermatologist, and a vascular specialist. I have also had bone scans and lymphatic scans - but the medical profession has drawn a blank when it comes to treatment.

I paid for private hydrotherapy and massage, which helped. I can also swim again now which helps too. I see a herbalist for immune support to address gut issues and that is (slowly) helping.

How are you feeling now?

I'm in pain most of the time but I've got used to it. I don't need to take carbimazole now, as my thyroid levels normalised after the hot nodule was removed.

Do you have any tips or words of support for anyone else on their own journey with thyroid disease?

Do as much of your own research as possible and take control. Also, make sure you have regular blood tests to check your medication levels are right. If you’re not monitored regularly your thyroid levels can become too low due to the carbimazole suppressing your thyroxine production and then you become underactive. Looking after yourself holistically will really help, so try to keep stress to a minimum, sleep well, eat well - and have a laugh!

Explanation of terms

* Toxic or hot thyroid nodule – a nodule is usually a benign (not cancer) cluster of cells that does not produce an excess of thyroid hormones – this is known as a ‘cold’ or ‘non-toxic’ nodule. Sometimes, the nodule can become overactive and takes over the function of the whole gland. This is known as a ‘hot’ or ‘toxic’ nodule.

**Thyroid acropachy - this is a rare condition associated with Graves’ disease. It almost always presents in patients with TED and pretibial myxeodema. Its name means ‘thickening of the extremities’ and it is characterised by swelling of the soft tissue in the hands and feet and clubbing of digits. In severe cases, like Katie’s, patients can have joint pain. These patients tend to have high levels of TRAb. 

***Pretibial myxoedema or thyroid dermopathy (also known as Graves’ dermopathy’) -  is a form of Graves’ disease affecting the skin. It affects the lower legs and feet causing swellings, firm lumps and scaling and, more rarely, fluid build-up under the skin. It can sometimes affect the face. Skin can become sore and itchy and also change colour.

It most commonly occurs in people who have:

  • Graves’ disease but can also occur in people with hypothyroidism
  • Have severe eye disease
  • Are women
  • Are aged between 40 and 60

In most cases, the condition will clear up on its own although it can take several years in some patients. Generally, the prognosis for pretibial myxoedema is quite good. In people with Graves’ disease, symptoms of pretibial myxoedema improve as TRAb (see ‘medical advisor comment’ for explanation) levels improve with treatment of the overactive thyroid. Generally, the condition doesn’t require treatment if symptoms are cosmetic or mild as the condition will clear up on its own. In severe cases of pretibial myxoedema, the outlook is still good, but it could take several years before the condition goes away completely.

Patients with severe acropachy or pretibial myxoedema are usually referred to dermatology where there are some treatment options available including steroids, immune modulators (rituximab) or octreotide can be tried depending on the severity of the condition.

BTF medical advisor comment

Katie has unfortunately experienced what we call ‘extrathyroidal manifestations.’ TED (Graves’ ophthalmology), pretibial myxoedema (thyroid dermopathy), and thyroid acropachy can all be associated with Graves’ disease and do not occur with other causes of hyperthyroidism.

It is unusual for patients to have Graves’ disease and a toxic hot nodule and would be difficult to diagnose both in the same patient at roughly similar times.  Nodules can exist in those with Graves. But diagnosing a hot nodule would require a technetium uptake scan. In patients with Graves’ disease, the uptake would be generally uniform across the entire gland whereas in someone with a hot nodule, the uptake would be confined to a single part of the gland.  

In these cases, Thyroid Stimulating Hormone Receptor Antibodies (TSHR Ab, also known as TRAb) testing is important. If it is Graves then TRAb will be high. The presence of pretibial myxeodema and TED suggests Graves’ disease in Katie’s case.

 More information and support

Living with thyroid eye disease

Living with hyperthyroidism

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