Hyperthyroid. Is this Graves Disease again?

[InkyFingeredPrinter]

Hi, I'm new here.

I'm a 49 year old woman just diagnosed with an overactive thyroid, also suffering from perimenopausal symptoms. I have NOT been having a fun time...

I had subclinical Graves' Disease 19 years ago, which was successfully treated with block replacement therapy. I've tested my thyroid every year or so since then, all fine, until recently.

After a few weeks of my pulse being raised (150 after going upstairs) and experiencing dizziness, unsteadiness, a general feeling of being really fuzzy and unwell, I got some bloods done.

My results were:

TSH - <0.01 (range 0.3 - 4.2)

FT4 - 42.3 (range 11 - 22)

FT3 - 18.7 (range 3.1 - 6)

Is this likely to be a resurgence of Graves? Any advice? Thanks.

[greygoose]

Well, your Frees don't look very high for Grave's - although they are, of course, high.

How was your Grave's diagnosed? Did they test the Grave's antibodies: TRAB and TSI?

[InkyFingeredPrinter in reply to greygoose]

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 InkyFingeredPrinter]

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.

[InkyFingeredPrinter in reply to greygoose]

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

[greygoose in reply to InkyFingeredPrinter]

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

[PurpleNails Administrator]

FT4: 42.3 pmol/l (Range 11 - 22) 284.55%

FT3: 18.6 pmol/l (Range 3.1 - 6) 534.48%

Your FT4 is heading for 3x normal range and FT3 over 5x normal range.

I would class this as high.

You still require antibody testing as you need to be absolutely certain this is continuous hyper Graves & not autoimmune thyroiditis (Hashis). With Hashis levels would be transient and naturally drop.

Your FT3 is disproportionately high which means if you are treated with antithyroid alone & the FT3 remains predominately higher your FT4 could go under before FT3 get into range.

Block and replace might be used again which can be more stabilising.

Your original results 20 years ago showed within range FT3 & fractionally elevated FT4.

Doctors often go by TSH when it’s <0.01 or undetectable they assume hyper graves.

If you posted with results like that today I would say you need antibody testing & repeat monitoring “wait & see” approach, but your current levels are much higher.

I don’t quite understand why you were treated with block & replace at that stage but doctors may have been cautious as you were also presenting with TED and stable levels is especially important for those with TED.

Any continuous hyperthyroid levels needs treatment, even mild elevations.

Also important to test folate, ferritin, vitamin D & B12.

Gluten allergy / intolerance common with Graves have you ever had test or trialled gluten free?

[InkyFingeredPrinter in reply to PurpleNails]

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.

[Buddy195 Administrator]

I would definitely look to test antibodies, for as greygoose has said, you can have TED with an under active thyroid. I was originallydiagnosed as Graves on ‘hyper’ symptoms and TED, but was encouraged to test antibodies privately by forum members and I actually have Hashimotos and TED. As PurpleNails has outlined, it’s very important to get your thyroid levels stable to reduce chances of a TED flare.

How are your eyes now? Have you seen a TED specialist ophthalmologist/ had any treatment for TED?

Regarding HRT, it may be useful to have a look at Dr Louise Newson’s free Balance App, as I find it really useful for comparing HRT medications & having up to date research articles. There is also an ability to post questions.

healthunlocked.com/redirect...

[InkyFingeredPrinter in reply to Buddy195]

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...

[Buddy195 Administrator in reply to InkyFingeredPrinter]

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.

[pennyannie]

Hello InkyFingerPrinter and welcome to the forum :

Graves is an auto immune disease and once a Graves patient, always a Graves patient.

There currently is no cure, and if your Graves antibodies were positive and over range - you have Graves Disease and will probably will wax and wane throughout your life.

The Block and Replace regime simply buys you time - an anti thyroid drug ( Carbimazole or Propylthiouracil -PTU ) is prescribed at a large enough dose to fully block your own thyroid hormones rising any further and T4 - Levothyroxine is also prescribed so your thyroid receives a measured dose of hormone and stops your levels falling completely through the ranges with you experiencing the equally disabling symptoms of hypothyroidism.

The NHS generally allocate a window of around 15-18 months with this treatment option and hope this gives your immune system enough time to calm down and your thyroid reset itself.

Quite why Graves happens and " why me " is the question, and down to the individual.

It does appear a stress and anxiety driven AI disease and poorly understood as no two cases present the same way, and medical research limited.

I found the Elaine Moore Graves Disease Foundation website the most rounded of all my research especially reading of alternative, more holistic treatment options and what you can do for yourself to try and calm down you immune system response. elaine-moore.com

However I only started my research around 8 years after having RAI thyroid ablation for Graves, a treatment I deeply regret.

Most current research is suggesting the longer one stays of the AT medication the better the outcome for the patient though I guess this cost more money to manage.

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

[InkyFingeredPrinter in reply to pennyannie]

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 InkyFingeredPrinter]

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.

[InkyFingeredPrinter in reply to pennyannie]

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.

[Sebastian600 in reply to pennyannie]

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 Sebastian600]

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.