We were very pleased to have M. Isabel Leite, consultant neurologist and associate professor University of Oxford, host our annual webinar for Thymic Malignancy Awareness Month (TMAM). The webinar was very well attended and below you will find the recording. Many patients put questions to M. Isabel which we have listed below. We hope you find the webinar and answers useful.

Q&A with M. Isabel Leite – TMAM Webinar 08.05.25

Q1. Is there a blood test or tests to determine if one has an autoimmune disease? If so which one, and to whom should I request?

There are blood tests for some of the autoimmune conditions, but not for all. The list is long, and they should be requested according to the symptoms that the patient has or, even if no symptoms, the advice is those for MG as this is the mostly associated to thymoma. The antibody is against AChR and is usually requested by specialists (either GP or neurologist if patients has myasthenia symptoms) or by the surgeons who operated the thymoma (majority of the surgeons now do this).

For the rare diseases there are other blood tests (e.g. In case of the pure red cell aplasia, it is the full blood count); note that many patients can have anaemia that is not related to their thymoma. The pure red cell aplasia is usually severe and does not respond to iron – usually require blood transfusion.
Pure red blood cell aplasia may be considered if no other causes of severe anaemia are found. GP should refer to haematology.

Q2.  Is there any evidence to suggest how to best manage thymoma-associated multiorgan autoimmunity? 

It depends on the type of autoimmunity (different diseases require specific treatment)

Q3. Since my thymectomy I have been having allergic reactions (itchy red circles on my hands and feet appearing after 30 minutes for 24 hours) to peanuts and strawberries.  Will this reaction go away after a while?
A. I have never seen patients with thymoma that develop allergies after thymectomy, but it does not mean it is impossible. Not sure if the allergy will go away. I suggest asking a referral to an allergology clinic

Q4. I had a Thymectomy on April 8th and was lucky that it was Stage1 and was contained. I am interested if this will have an impact on my Myasthenia Gravis which I was diagnosed with on March 18th. I take 3x60mg Mestinon daily and it helps a lot. 

Thymomas are removed mainly do not grow and become invasive. That also helps MG, although it not always happens; some patients do not improve much after thymectomy or their MG may get worse overtime if not immunosuppressed, regardless the thymectomy. It is difficult to predict. Patients may be well for a long time of their very mild MG.

Q5. Can lack of sleep for a long time cause  Myasthenia? I had CT scan of my chest, to check my thymus gland, waiting for results now.

No, sleep problems do not cause MG. Be reassured.

Q6. Is MG stress related ?

No. However some people feel that the symptoms are worse when under stress.

6A. Has anyone recovered fully from MG or is it always a journey down hill?

There are people who recover completely, especially after years of treatment; we say that they are in remission. However the disease is chronic. Therefore, after remission, there is always the possibility of getting symptoms again. NOT always a down the hill (not at all); MG is treatable and often patients are very well.

6b.Why can’t MG patients have direct access to a specialised team when they have a crisis instead of going through A&E, GP …etc which is time consuming.

When patients have MG crisis, the best is, first, to contact specialist, GP and, if needed, local A&E all at the same time.  Because the severity of MG crisis, the advice is to attend the closest A&E. It would be devastating traveling in crisis to be seen by an expert. Take with you always copy letters to inform the doctors. If it is just an exacerbation (not a crisis), then there is time to contact consultant and GP. Sometimes even mild infections can exacerbate symptoms. Other cause of exacerbation is while reducing dose of steroids; So try to identify the problem and contact specialist and GP.

Q7. Will you be covering pure red cell aplasia?  My sister developed this in in 2022 having had a Thymoma removed in 2017.

Yes. There is good immunosuppressive treatment for this condition. Hope they are well.

Q8. I had thymoma diagnosed in 2022 and will be having a thymectomy shortly.

Sounds a long wait for the surgery.

Q9. Can you explain the link between a Thymoma and auto immune conditions?

Thymus has a role in preventing autoimmunity. When it is diseased, it may contribute to autoimmunity; there are immune cells that develop certain antibodies (anti-interleukins) that lead to autoimmunity and opportunistic infections.

Q10. Do you know of any adverse effects of removing the thymoma in adults.

There has been a study that claims that thymectomy, including in adults, can contribute to certain autoimmune conditions. However, no one in the field of MG has ever seen such strong correlations

Q11. What is the role of the thymus in the lymphatic system?

No particular role as per my and current knowledge.

Q12. Can lymphocytosis with thymoma be an sign of an autoimmune decease?

It depends on the how severe or mild the lymphocytosis is.

Even though it is not usually classified as autoimmune condition (it is more a hematological problem)

Q13. Since B1 thymoma is unique consisting roughly 80% immature lymphocytes and 20% cancerous epithelial cells, In stage iva tumor, immunotherapy is one modality, but due to its easy possibility of autoimmunity adverse effect, it is discouraged.  So, what can be done in prior  setting to prevent autoimmunity, possible via preventive therapy. I mean for patients who do not have MG/autoimmunity  just yet.

There is no preventative treatment to give because: 1. apart from MG (when AChR abs are present) it is very hard to predict who is going to have such syndrome; 2. The rarity of all syndromes apart from MG, makes it difficult to know who to start on prophylactic immunotherapy. Therefore the treatment starts when the autoimmune process is diagnosed; 3. Note that treatments can have side effects and therefore, taking them for prevention of something so rare is not advisable.

Q14. It seems only B1 and B2 are good candidates for autoimmunity due to its immature lymocytes content.  Please comment

Yes, that is correct but not exclusively. The more lymphocytes there are vs epithelial cells, the more potential for autoimmunity exists (very rare though)

Q15. Why is thymoma linked to these autoimmune conditions?

Hard to explain but, the thymoma contains great amount of immune cells; it also contains peripheral tissue antigens; all together, immune cells and antigens may induce autoimmunity (immune cells attacking certain antigens or small molecules, expressed mainly by epithelial thus causing autoimmunity).

Q16 I have treatment for Nephrotic Syndrome at the moment. It is now in remission. Could it possibly to happen again? Many thanks.

Yes, it may recur as in other autoimmune syndromes, but hard to say.

Q17. What’s bulbar?

We call for example bulbar symptoms those that involve, throat (swallowing, moving tongue, voice affected)

Q18. I had a b2/b3 Thymoma removed at the tail end of ovarian cancer treatment. I developed MG three weeks later, but had to figure out the connection on google. I was at a major cancer centre in the US with a great neurology program. Should the thoracic surgeons office have immediately referred me to neurology? Why did they not? How can I increase their awareness?

Yes, they should have referred promptly at the time of the diagnosis of the thymoma but, as said above, difficult to prevent. The ideal is to promptly refer when the first symptoms appear.