Question about Grave’s Disease and Prednisone

[kellykel]

Hello, I was recently diagnosed with Graves/hyperthyroidism per tests with my general practitioner. I have to wait 2 weeks to see an endocrinologist to discuss treatment.

A couple of questions for anyone who has experience with this:

First, a brief summary: Clinical diagnosis of GCA and on prednisone for 2 years at varying doses.

Always in question is I have never “responded” to prednisone as everyone expects - pretty good relief of symptoms. Along with other questionable diagnosis issues (normal markers, onset at 52, etc.), the fact I have not responded as expected to steroids has led nearly all Drs to question GCA diagnosis. As mentioned, I’ve been at many varying doses - 40mgs for 6 months when diagnosed, then attempts at tapering (currently at 23mgs). No matter the dose, I just get most of the pain edge off a 24 hour, all over Headache with jaw/upper neck pain.

GP wonders if I’ve had low threshold hyperthyroidism this whole time.

My questions are:

1. Would Grave’s or hyperthyroidism (I know they are different) cause me to metastasize medication differently? Less effectively?

2. Has anyone had hyperthyroidism or Grave’s and what treatment did you best respond to?

Thank you for any advice.

Kelly

[PMRpro Ambassador]

My first thought is that 40mg is a very low dose for GCA - it is the bottom of the range, to be used for non-complex cases with no jaw pain or visual symptoms. Were you referred to a rheumatologist about the possibility of GCA? You certainly should have been if you then presented as atypical.

What were the symptoms that led to a diagnosis of GCA?

Hypothyroidism can masquerade as PMR - but I haven't come across a thyroid problem playing at GCA before.

[kellykel in reply to PMRpro]

Thank you PRMpro.

After being super healthy and active for 52 years, had sudden onset (after terrible flu illness) of severe all-over, 24-hour head pain, jaw claudication, muscle fatigue, blurry vision, fatigue. Also pain down arms to thumbs. On journey to get answers, dr found 2 brain aneurysms. Surgeon said they needed clipping but we’re unrelated to my pain.

Had inter-cranial brain surgery and healed ok.

He was right, severe pain persisted.

I was sent to neurologist to try migraine type medications as I was told I had New Daily Primary Headache.

None worked.

After 5 months of that, I was ready to jump off a bridge.

Had still not even heard of GCA one year in.

I remembered when I had brain surgery, they gave me prednisone for healing. I remembered it was a miracle in terms of lessening the pain.

Pain medication alone did nothing.

So I started begging for prednisone from a new neurologist. He was reluctant as there were no markers to suggest inflammation or pain.

A friend had PMR and we looked up GCA symptoms and I had them all.

Went to new neurologist and he agreed and provided clinical diagnosis. Neurologists, rheumatologists, and others have said I do not have GCA.

Over two years, I’ve been to many drs, including Mayo Clinic.

Everyone agrees it’s some kind of autoimmune problem but don’t fit into any very well and have no solid data to support a definitive diagnosis.

The search continues. Thought I’d check out sacral cranial inflexibility and see if it’s a mechanical issue.

Right now, was just wondering if one metastasizes medication differently if they have hyperthyroidism.

[PMRpro Ambassador in reply to kellykel]

Metabolises you mean - metastasize is used to describe spreading cancer, you haven't got that!

They can't tell if you have GCA without a positive biopsy from an affected artery. If it is deep in the brain, quite common, they aren't going to have a biopsy result. In that case they must go by symptoms and reponse to pred. One in five patients with GCA doesn't have raised markers - or at least, they may be raised for them but not outside the "normal range" which, by definition, includes only 95% of the normal population. The other 5% are outwith that range - and any of us might be in that group.

Sounds as if you have a load of tick box doctors - autoimmune disease may well be on a continuum and each of us has our own a/i disease, I have the PMRpro variety, you have kellykel disease. There is no cure for most a/i disease, for most of us the best they can offer is good symptom management and prevention of further damage - in the case of GCA fewer headaches and no loss of vision. If pred is the only drug that does that for you - where is their problem?

Once you have one a/i disorder, it is more likely another will come along to play. Then the symptoms change a bit - you have kellykelplus disease. I do hope your doctors get their act together though.

[kellykel in reply to PMRpro]

😊 thank you PRMpro. You’re always so wonderful.

[PMR2011]

I was diagnosed with Graves’ disease 1 year into my GCA journey (though I think it started earlier). My resting heart rate was up to 120 by the time they figured it out! Initial medication was Beta blockers to control symptoms and Methimazole to inhibit thyroid. Blood work every 6-8 weeks to check TSH and T3, T4 levels.meds adjusted and currently am off Beta blocker (Propranolol) and on minimal dose of Methimazole (2.5 mg daily). No Med interactions with Prednisone and I definitely felt better once symptoms were under control. Good luck figuring it all out!

[kellykel in reply to PMR2011]

Thank you. This was really helpful!