Graves Disease

[tomh]

I have had GCA for 10 years, and continue taking Pred. " montha ago I saw a %kg weight loss ( 85 -80), and now it is 8Kg. My Rheumy suggested Graves leding to Hyperthyroidism. Blood tests have confirmed Hyper. I am taking Beta Blocker to regulate heart since Cardio says that an effect of Hyper. is a Dystolic heart valve dysfunction. I am taking Tapazol ( 20mgpd) for the Hyper, plus 4 other medications. I am still losing weight, but look better.😀.

Symptoms are lack of energy and tiredness.

My question is, any posters here who have had similar, and what is recovery time.?

Thanx in advance.

[PurpleNails Administrator]

Did your doctors suggest a connection with giant cell arthritis / or taking prednisone treatment?  I don’t know of a known connection so I’m assuming they are being managed separately.  

Have you had thyroid antibodies tested? 

TPOab (Thyroid Peroxidase antibodies) 

TGab (Thyroglobulin antibodies)

TRab (TSH receptor antibodies - measures stimulating, neural & blocking antibodies)

TSI (Thyroid-Stimulating Immunoglobulin) Graves. 

Graves is confirmed by positive TRab & or TSI.  

Important to confirm cause as hyper can be transient.

TPO & TG Signify autoimmune - and are present with Hashimoto’s  & Graves.

What are TSH, FT4 & FT3 levels.  If hyper you would expect to see very low TSH and high over range FT4 & FT3.  Sometimes Doctors go by TSH & wrongly judge thyroid levels. 

In UK we use carbimazole which is the pro drug to Tapazole.  Was it 20mg as this is a low starting dose.

The Tapazole dose is adjusted to help control levels until the issue resolves (goes into remission) 

This is very individual and many can take treatment for months & years. Doctors often look at permanent treatments after 18 months, so something to research in time. 

[tomh in reply to PurpleNails]

Thnx PN for your comments. I live in Brasil, and unlike Uk, where you see GP's, Brasil has specialist Drs. I regularly see 5 Drs, Urologist, Endocrinologist, Rheummy, Cardiac, Nephrologist. MY TSH was below 0.01. T3 243ng/dl,T3 Live 10.79 pg/ml T4 live4.3 ng/dl. TRAB Antibody) 10.02Ul/L.

With these rsults my endicrinologist sent me to my Cardiac dr, since I was having heart arrhythmia, high pulse rate, shortness of breath, and high weight loss. She hospitalised me. I was there for 14 days. Incase you are unaware, Hyperthyroidism affect the Dystolic heart function. That is why I am also medicated with Beta Blocker. My resting BP is 12/6, my PR is 54. ( normally 60)

I am 76 yo and have had GCA for 10 years with daily Pred. My Rheummy says there is no link between Graves and GCA except they are both autoimmune diseases.

I spent 15 weeks end of last year in hospital with CV19, Intubated, pneumonia, bronchitis, thrombolsis in both legs, on life support for 4 weeks. No visitors allowed, Hallucinations, and hands strapped to bed. Do not remember much of those 4 weeks. I'm thankful I was in Brasil, since I believe In UK it would have been terminal.

[PurpleNails Administrator in reply to tomh]

TSH was below 0.01. 

T3 243ng/dl,

T3 Live 10.79 pg/ml 

T4 live4.3 ng/dl. 

TRAB Antibody) 10.02Ul/L

I am guessing “live” T4 & T3 are what we refer to as “free’” / (unbound) levels.  

The total levels are not as useful a measurement. The units used vary across the world - as do lab machine ranges.  So a specific lab range is essential for each result, can you add please.

I didn’t know GCA was autoimmune.  Having 1 autoimmune makes you predisposed to others.

What you experienced with C19 sounds horrendous.  

Covid seems to trigger thyroid issues in some, it’s something being researched further.   

The traumatic time could also be a trigger for Graves.  

I have a hyper nodule which causes elevated hyper levels, not autoimmune.  My levels were never very high but they were elevated for very long time.  My TSH has been undetectable for years.

[tomh in reply to PurpleNails]

Forgot to mention Tapezol starting dose was 30mg. I have very low red and white blood cell counts, and prior to hospitalisation, I was taking Azeitaprione with Pred. Drs took me off Azeitiprione since it lowers White Blood cell count.

[Buddy195 Administrator]

As PurpleNails has advised, definitely check that the correct antibody tests have been completed to confirm Graves.

Graves Disease needs to be confirmed via positive TRab or TSI: 

TRab TSH receptor antibodies 

TSI Thyroid-Stimulating Immunoglobulin

I was originally diagnosed as Graves, largely through hyper symptoms and a diagnosis of Thyroid Eye Disease, but later antibody tests actually showed Hashimotos/ under active thyroid.