InkyFingeredPrinter in reply to greygoose9 months ago

Thanks, that's reassuring that it's not too out of control.

No, TRAB and TSI not tested but I've added it to my list of requests for my upcoming bloods!

I think it was originally diagnosed mainly because I had protruding eyes (right exophthalmos). The endocrinologist, in his letter to my GP, said "there is no doubt she has Graves' disease". My results at diagnosis in 2000 were:

TSH <0.01 (0.35 - 5)

FT4 19.6 (9 - 19)

FT3 5.5 (2.6 - 5.7)

greygoose in reply to InkyFingeredPrinter9 months ago

Well, there's a lot about the thyroid that that endo doesn't know! It's comparatively rare, but you can have TED with hypothyroidism. So, there was doubt. And, he should have tested not only your Grave's antibodies, but also Hashi's antibodies. Admittedly your TSH is low but your Frees aren't high at all. You could have Hashi's.

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InkyFingeredPrinter in reply to greygoose9 months ago

I also had sweats, weight loss, hunger and acne. Maybe that caused the diagnosis. But there's nothing else on my original paperwork.

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greygoose in reply to InkyFingeredPrinter9 months ago

Well, you were hyper, which would have caused those symptoms. But, the question that needs answering is: what caused the hyper.

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InkyFingeredPrinter in reply to PurpleNails9 months ago

Thank you very much.

I hadn't quite got my head around the ranges; I was looking just at the upper ones. Hmmm.

On the vitamin front:

D3 56.7 (>50nmol/L) - it was very low last August, at about 12

B12 359 (180 - 640ng/L)

Folate 12.7 (3 - 20ug/L)

I can't see ferritin on my recent results.

I will ask for antibody tests when I get bloods done in 2 weeks. TSI ab & TRAb antibodies?

I've never had a gluten test or trialled it. Interesting that many of the symptoms for gut dysbiosis are similar to peri-menopausal (but then, many things are). According to endocrineweb.com/gluten-aut... symptoms are:

Brain fog

Moodiness

Slowed thought process

Sleeping disturbances

Anxiety and depression

Constipation

Diarrhoea

Abdominal pains

Abnormal thyroid levels

High cholesterol

Irregular periods

High blood pressure

High blood sugar

I have all of the above except

Diarrhoea

Abdominal pains

High blood pressure

High blood sugar (I don't know my blood sugar)

Cholesterol is 3.9 (0 - 5nmol/L)

Trialling gluten free - the horror! I am currently on no alcohol, very few processed foods, no fructose and minimal sweetened foods (compared to my habits of a year ago). Giving up sourdough, rye and crackers would be rather a challenge. I may leave that one a while!

Thank you again for such a thorough and considered reply.

InkyFingeredPrinter in reply to Buddy1959 months ago

Thank you. I am so glad I found this forum; I was completely unaware of that.

My eyes are kinda OK. I think they've always been quite protruding. The left one opens slightly wider than the right. I had an eye flare-up about 5 years ago: sudden onset proptosis and aching left eye. I had an MRI that showed very slight enlargement of some of the muscles around the left eye, but no other significant abnormalities. No evidence of overactive thyroid at the time. I was fighting with lack of focus, which they said was an initial stage of double vision, but that settled down, and the eye gradually/eventually went back to normal (or what's normal for me, at any rate).

When I had my initial diagnosis 20 years back I was seen by Moorfield's Eye Hospital. Other than a diagnosis of blepharitis (still a problem from time to time), I don't recall what they did.

Thanks for the Louise Newson suggestion. A friend suggested that a few weeks back, and I agree, it is useful. I'm not considering HRT yet.

I'm actually finding that the hot flashes I was getting recently have subsided now. I wonder if they could have been down to a curly thyroid. Trouble is, so many of these symptoms are interchangeable. And all of this is on a backdrop of continued shielding (heavily immunocompromised kidney transplant partner) and raised stress levels. I'm no realising how important it is to deal with stress...

Buddy195Administrator in reply to InkyFingeredPrinter9 months ago

I agree that many peri menopause & thyroid symptoms are interchangeable; it is a bit of a juggling act working out what’s at play! Definitely worth looking into benefits of magnesium re stress; if you put ‘magnesium’ into search facility on posts, you will find lots of links to articles on this.

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InkyFingeredPrinter in reply to pennyannie9 months ago

Hello, and thank you so much!

Looks like I need to have antibody tests to confirm it definitely is Graves. When I had it (if it was Graves) before, I clearly didn't read up on it enough, and I was unaware that it was lifelong and might wax and wane.

Stress and anxiety have been plentiful for the past two years (still shielding here as my kidney transplant partner is heavily immunocompromised) so it may be that that's been a trigger. Looks like perimenopause can be a trigger too, from what I'm reading, though it seems to be more on the Hashi side of things.

I think I did block replacement for slightly over 18 months. I guess I've done fairly well to go 19 years without a flare-up.

I looked at the Elaine Moore website the other day, quite possibly after reading a post from you, and I found it really good. Have ordered her book.

Why do you regret your RAI treatment?

pennyannie in reply to InkyFingeredPrinter9 months ago

Please read my profile :

No , 20 odd years ago there wasn't much information, and the hospital leaflets were not as truthful as they should have been, and the risks attached to ingesting a toxic substance not discussed with me.

I found Elaine's first book a bit heavy going, and believe written initially for the medical profession as an explanation of her own journey with Graves after RAI thyroid ablation, and think the website more patient focused.

There are known links between RAI and cancer - RAI is taken up, to a lesser extent by other glands and organs within the body - RAI caused my thyroid eye disease - RAI induced hypothyroidism is more difficult treat - need I go on :

Most current research is suggesting that longer the patient stays on the AT medication the better the outcome for the patient :

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

I now manage lingering Graves, thyroid eye disease and hypothyroidism and to be well need to self medicate and I take full spectrum thyroid hormone replacement which contains all the all the same known hormones as my thyroid once supported me with.

Currently on the NHS will only routinely prescribe T4 - Levothyroxine which doesn't restore my health nor well being, nor do they run the appropriate blood tests to manage my health issues, so again, i need to run these for myself and sort myself out.

P.S. Yes, antibodies can wax and wane - and your immune system may have been triggered again - maybe worth revisiting Moorfields - I was there around the late 1980's, some 20 years prior to my official diagnosis of Graves and ended up having laser treatment for holes and tears in both eyes with no diagnosis but a suggestion I may have inflammation build up on my spine. I don't remember a blood test being run - my doctor then was treating me for conjunctivitis and when i went to see my optician as I wasn't getting any relief of symptoms he looked behind my eyes and put me in cab to Moorfields City Road.

PPS. Please ensure whatever lotions, potions, gels and drops you use that they are all Preservative Free - I was diagnosed with the blepharitis around 6 years ago - it was in fact a build up of ' gunk ' at the lash base caused by using a prescription eye ointment - bathe eyes - make a pad of a warm moist clean flannel - place on your closed eyes and gently massage round and around the lash base.

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InkyFingeredPrinter in reply to pennyannie9 months ago

I'm sorry to hear what you've been through. My sympathies. I shall be wary.

Thank you again for your in-depth help and advice. Hugely appreciated.

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Sebastian600 in reply to pennyannie5 months ago

Hi.My diagnosis came about three years ago,I've been on Carbimazole 20mg since two and a half years ago.

Recently upped to 30mg, however due to stress hormones went up again,that's the reason I'm on 30mg.

Anyway I've been offered to go on RAI which I refused every time, personally it doesn't make sense to me having overactive thyroid then becoming underactive.

My gut feeling has been telling me not to go for RAI.

My question is why do you have regrets receiving RAI treatment?, if I may ask,out of curiosity.

I don't know if you have been on Carbimazole?.

I have experienced that it makes me snappy or I developed "short fuse", it's like not me in a sense, or is it Grave's itself causing this? Anyone has had similar experiences please let me know.

I also avoid relationships due to this and I'm 43.

I have accepted this condition, however sometimes I feel down because I have it and can't move forward in life as once wanted to.

I work as a Carpenter,was at university previously but I dropped out on my own request due to pressure and anxiety and sweating profusely, very annoying feeling.

I try to live day by day it helps me this way.

Hmm in me personally I think this condition is related to emotions or beginning of it and it progresses gradually.

I'm fed up hearing doctors telling the cause is unknown etc.

I no longer trust them what they say.

Sebastian

pennyannie in reply to Sebastian6005 months ago

If you press on the icon alongside my name it will take you to my profile page and then you can read my thyroid journey.

I don't wish to relive my past journey in any great detail as it still upsets me and prefer to focus on looking forward for my health and well being.

Please start reading up on the links detailed in my reply above to the original poster.

Graves rage is well known - being short tempered, angry, anxious and nervous all well documented.

Everybody's journey with Graves is unique to them and finding your triggers is the key to understand why you get wound up in the first place.

Try to avoid circumstances that upset you though as none of us live in a bubble and life needs living this can be a challenging time for anybody in this phase of the disease.

Finding ways to calm down your immune system response whether mental or emotional is all important - finding things to turn off that ' what if ' question, finding ways to turn off and relax and finding things you enjoy to do is all important and you need to try to find time for your ' you ' . and give yourself a break .

There is nothing on your profile page - if you start your own post you will be helped and advised - rather than tacking on the end of another person's post.

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