Hypo with Graves Disease?!!

[Bandittabby]

About 15 years ago I had hyperthyroidism with serious Graves disease.

However I have now been diagnosed with hypothyroidism and the Graves disease is active again.

Has anyone had a similar experience as I didn't even know it was possible?

[greygoose]

Are you sure it's Grave's, and not Hashi's? Have you had any antibody tests done?

[Bandittabby in reply to greygoose]

Dear Greygoose,

Thank you for your speedy response.

I have had tests done for antibodies but results not received by Opthamologist yet. She based her decision on the results of my MRI scan.

Every case of this disease seems to be different, no wonder we can't seem to get an accurate diagnosis.

[Marz in reply to Bandittabby]

So what treatment and testing has taken place in the last 15 years ? Vitamins and Minerals - have they been tested ? Not heard of an Opthalmologist doing thyroid testing before - great news !

[Bandittabby in reply to Marz]

She is a consultant in Opthalmology and the reason I was sent to her was that my Optician was concerned that my Graves disease was active.

[greygoose in reply to Bandittabby]

You didn't mention an Opthamologist diagnosing your thyroid. Do you have Grave's eye disease, then? I doubt an opthamologist would know that you can't be hypo if you have Grave's. I would want my TRAB or TSI tested before I accepted a diagnosis from anybody.

The reason we can't get accurate diagnoses is that doctors don't do the right tests. There may be variation in symptoms, but the basic disease is the same for everybody. It's just a question of do we have Hashi's, or do we have Grave's - or both at the same time, which is rare but possible - or do we have non-autoimmune thyroid problems.

[Bandittabby in reply to greygoose]

I think she is quite highly qualified as this is her title: Miss_________ MA (Cantab) MBBS MD FRCOphth

Oculoplastics and General Opthamology Consultant.

She advised I had the choice to either undertake a heavy treatment with steroids or wait and see how the disease was going to pan out. I really don't want to go on steroids, but if it gets to that stage, I will ask for a referral to an endocronologist.

[greygoose in reply to Bandittabby]

I don't doubt she's qualified as an ophtalmologiste, but that doesn't mean she knows anything about thyroid.

You really do need those Grave's antibodies tested.

[dottydame in reply to greygoose]

I too have Hashimotos and Graves disease and have been under the attention of a consultant ophthalmologist specialising in Thyroid eye disease. He also does a full range of tests for Thyroid and works closely with my endocrinologist.

[Valarian]

Do you have the test results from when you were diagnosed as 'hypo" ?

Whether you are currently hypo or hyper, it could be the Graves' antibodies (TRAb or TSI) causing the TED, Given TED can get worse in people who've had their thyroids ablated with RAI, it isn't necessarily related to thyroid levels; however, it is always associated with autoimmune disease.

I don't have TED (trying to find some real wood to touch in this plasticky coffee bar.....), but the physical implementation seems to be pretty distinctive. If the antibody tests for Graves' are negative, it would be worth asking for Hash's antibodies to be tested, since according to both the BMJ article linked below and the BTF leaflet on TED, it can also be associated with Hashi's. The BMJ suggests that up to 10-15% of TED cases present with current/previous Hashi's, although other sources suggest a lower percentage. You may be hypo because your thryoid was damaged by Graves' rather than from Hashi's. Either way, I would ask for antibodies to be tested, plus FT3, FT4 and TSH - the BTF leaflet notes that to prevent TED from getting worse, it's important to keep thyroid levels from fluctuating too much, especially into hypo levels, so you, your endo and GP need to be on top of this.

By the way, if you smoke, definitely time to stop as this can make it worse.

Hopefully, most of us with Graves' are used to regular questions from our endos about vision change, blurred vision, altered colour vision, bags under the eyes etc; I wonder how many people with Hashi's even know what sort of things to look out for.

BTF leaflet on TED:

btf-thyroid.org/information...

BMJ Article/Clinical Review:

google.com/url?sa=t&rct=j&q...

[Bandittabby in reply to Valarian]

Thank you so much for your very informative reply. I am awaiting results for anti-body tests, so hopefully will have a clearer picture once these are received.

[julesblanchland]

Hi, yes I was massively hyper, then after medication I went massively hypo.

Now hopefully getting near to normal.

[Hidden in reply to julesblanchland]

That’s what had happened to me Jules

Can You tell me your story or compare stories as feel so isolated

[Bandittabby]

Did anyone warn you that this might happen?