Hyperthyroid symptoms, blood test help after Hashimotos Encephalopathy.

[Kes8]

Good Morning as members here have helped me so much I was hoping to get some advice for my Mum too.

Long, long, long story but my Mum was diagnosed with Hashimotos Encelopathy (also known as Steroid responsive Encelopathy with associated thyroiditis or autoantibodies to thyroid tissue/SREAT) last April after a hellish time. This disease/condition is incredibly rare and it was a battle to get a diagnosis. To give some perspective my mum is a fit and able, intelligent and incredibly busy mother and grandmother who within 48 hours had developed full dementia. She also suffered with seizures. They told us to put her in an old people’s home or get carers. We refused and found this condition ourselves and had to fight tooth and nail to get them to test which they did reluctantly. Following treatment with immunosuppressant’s thankfully she has made a full recovery.

However recently she has started to suffer from many symptoms of hyperthyroidism. I was hoping someone could interpret the blood results we have? There are quite a few as the levels of antibodies are checked very regularly and these are now very low.

March – 2017 (Medicheck)

TSH 0.481 (0.27-4.20)

FREE THYROXINE 15.72 (12.00-22.00)

TOTAL THYROXINE 92.0 (59.0-154.0)

FREE T3 4.12 (3.10-6.80)

Antibodies all well below upper parameter of range.

February – 2017

TSH 1 (0.27-4.20) (NHS)

They ignored request for T4, T3 etc. as “Never heard of SREAT and we don’t test outside of our guidelines and TSH is normal”

January 2017 (BH)

TSH 0.39 (0.27-4.20)

T4 TOTAL 97.5 (64.5 – 142.0)

FREE T4 18.61 (12-22)

FREE T3 4.51 (3.1-6.8)

October 2016 (NHS)

TSH 0.59 (0.27-4.20)

MAY 2016 (NHS)

TSH 0.81 (0.27-4.20)

T4 20 (12-22)

Thank you in advance for help and time.

[Clutter]

Kes8,

Well done for sticking to your guns and getting a proper diagnosis.

Your mother's results results have been euthyroid (normal) throughout and neither FT4 nor FT3 have been high in range.

There is a lot of crossover of hyper and hypo symptoms. What symptoms are you/your mother describing as hyper?

[Kes8 in reply to Clutter]

Thank you and many thanks for your reply.

Symptoms include: Increased appetite, increased gut motility, sensitivity to heat and sweating, hair loss and has become flyaway, bilateral hand tremor - worse in mornings, increased anxiety, nervousness etc, heart palpitations.

[Clutter in reply to Kes8]

Kes8,

Symptoms do sound hyper but there isn't a creeping towards hyperthyroidism because TSH isn't suppressed and FT4 and FT3 aren't high in range. Is your mother taking Levothyroxine?

[Kes8]

Just to add my Mum doesn't take any medicines for her thyroid.

[Clutter in reply to Kes8]

Kes8,

I can only suggest your mother contacts the doctors who diagnosed HE for support.

Her symptoms sound very much like mine before I was diagnosed with Hashimoto's. I was told they were non-thyroidal because I was euthyroid but I subsequently found people can be very symptomatic with euthyroid Hashimoto's.

[Kes8 in reply to Clutter]

Thank you, seeing consultant Neurologist this week and as it's a neuroendocrine condition will push for a endocrine appointment.

[ShootingStars]

Hi Kes8,

I realize it's been over a year since you posted this. How your mother is doing these days?

HE is responsive to steroids and IVIG is used to successfully treat this disease. Diagnosis can be difficult since there are no exact tests for this disease, and positive response to steroids is one way it's diagnosed. IV immunoglobulin G (IVIG) has been successfully used in treating and resolving HE. It is usually a short course of treatment and then it is resolved. By chance has your mother considered trying IVIG?

How is her thyroid doing? What are her current thyroid levels and antibodies? People with both Graves Disease and Hashimoto's can have HE. You mention above that her results said she did not have elevated Hashimoto's thyroid antibodies. Did she ever have high antibodies for Hashimoto's at any time? Were Graves antibodies ever tested? In HE antibodies are usually elevated (hence being Hashimoto's E), but it's possible that she was a rare case where she didn't have Hashimoto's. HE can also occur in Graves patients, so perhaps she had Graves antibodies instead of Hashimoto's?

I hope she is doing well now, and I hope that you are, too!