Graves? Or Addisons

[Millea]

Hi there, I was diagnosed with Graves Disease in April 2015 - my bloods were off the chart and I was suffering all the symptoms and had been for some time. Hair falling out at alarming rate, heart palpitations, breathlessness, insomnia, absolute exhaustion, brain fog, skin texture bizarre dry and lumpy, ankle-knee-hip pain, drumming in my head so loud i couldn't sleep - felt like I was falling apart. I was 52 and felt 82. At the time I was looking after my three children plus giving 24/7 care to my 87 year old mum who was immobile and suffering end stage Alzheimer's. I was put on proprananol and carbimozole. I won't bore you with the next two years of bouncing between hypo and hyper and all the adjustments to meds but will add that I developed TED severely and was referred to Moorfields for high dose steroid infusions once a week for 16 weeks and Guys Hospital for radiotherapy for 14 days. Presently the inflammation of the eyes has improved and the double vision is now only when my eyes are tired (it was constant before) but I wanted to get some advice and thoughts on my bloods now. The last two blood tests done at the Whittington Hospital have come back with everything within range and my endo is delighted - which is lovely - except it doesn't explain why I am still exhausted after doing barely anything, still get palpitations just walking up an incline, still have ankle, knee and hip pain, hair is still falling out and still can't sleep even though I'm always tired. Last visit I pointed all this out and endo said I might have Addisons and not Graves but Addisons is very rare and it was unlikely. However, she did my blood pressure whilst sitting and then repeated test after asking me to stand up and the pressure dropped noticibly so she has given me a form for a cortisol test. Which I am going in to do tomorrow.

Here are the results of last two blood tests any advice or comments would be appreciated.

I will also add that I managed to get my vit and folate tested in Oct at the same time as my regular test - after repeatedly asking for two years. My endo just kept ignoring my request or looking puzzled when I said they should be included in the regular test. She didn't think they were relevant and only included them in Octobers test to stop me being annoying. I wasn't able to get them repeated in Decs test.

October 2016

FREE T3 - 4.3 (3.1-6.8)

FREE T4 - 13.5 (12-22)

TSH - 4.1 (0.3-4.2)

VIT D - 62 (50-250)

B12 - 657 (197-771)

Folate - 6.5 (3.9-26.8)

December 2016

FREE T3 - 4.2 (3.1-6.8)

FREE T4 - 17.2 (12-22)

TSH - 2.4 (0.3-4.2)

Any thoughts as to why I would have fairly good blood test results but still feel dreadful would be appreciated. Thanks.

[Clutter]

Millea,

You have TED so you have Graves Disease which is the autoimmune disease causing hyperthyroidism. It's possible to have Addisons Disease which is insufficient cortisol as well as having Graves. Your endo should test cortisol levels. Addisons Disease is not particularly rare in thyroid patients and its inexcusable not to do cortisol testing to confirm or rule it out if your endo suspects it is possible you may have it.

There was a considerable rise in FT4 and drop in TSH in December. Are you still taking Carbimazole?

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

Vitamin D is optimal around 100. I would supplement 5,000iu D3 for a couple of months and then reduce to 5,000iu alternate days and retest in May.

B12 is optimal. Folate is a little low. I would supplement a B Complex vitamin which will raise folate.

[Millea in reply to Clutter]

Thanks for your reply. Yes, I am still on carbimazole @ 20mg a day plus 10mg Propranalol.

I will increase my folate and D3 as you suggest.

Thank you.

Will post again after I have the cortisol results.

😊

[Annie007]

Hi Millea

I have Graves and Addison's

I'm not knowledgeable enough to comment on either...yet 😁

This forum and its great advice has really helped me to tackle my thyroid 'situation' and I feel so much better feeling there's a healthy future for me, but that I've got to take control

I hope your cortisol test gives you a definitive answer and that you can start to feel better

"I was 52 and felt 82"...yep, that was me too, receptionist at A&E thought I was my partners mother when he booked me in! 😞

Good luck

Anne

[Millea in reply to Annie007]

Dear Annie007

Thank you so much for your reply. Sounds like you too have been through the wars but so glad you seem to be getting better - it helps to know there is hope. I wish you well and continued improvement.

All the best.