Graves' Disease - You're Doing It Wrong!

[efilwol]

I am a crap Graves' patient. Last week I ended up in A&E with atrial fibrillation. It started out of the blue on Monday morning. Prior to the AF, I felt absolutely fine. I spent the night in the Acute Medical Ward and they would have kept me for days if I would have allowed it.

Saw an endocrinologist on Friday who tells me I "need to get better at recognizing my hyper symptoms".

Problem is, aside from BP & rapid pulse, I don't have any that I can find. I have read several other Graves'/hyper members talk about how they were in denial that something was wrong with them, despite masses of symptoms and it motivated me to look very carefully at myself and how I am feeling to see if maybe I am dismissing something that is Grave's symptomology.

I can't find anything.

A lot of this is complicated by other medical problems. I have multiple arthridies, chronic pain and complex regional pain syndrome, so I am sort of used to feeling crap. I hate it when the doctors ask that same old question - "How are you feeling today, on a scale of 1-10, 1 being no pain at all and 10 being the worst pain you have ever had?"

I always tell them the same thing - "I can't really answer that, because I don't have a 1 any more and I haven't have a 1 for a very long time, so the question is irrelevant."

You can imagine how well that goes down with them.

I don't wish to sound complaining about having so few symptoms, but I guess I am complaining because I have no way of knowing when my thyroid might freak out again and shoot up to Free T4 of 52 and AF for me.

Looking at the symptoms of Graves' listed on the Mayo Clinic website:

- Anxiety - no more than usual. I am a solitary person with multiple health problems, so I do have some anxieties like "What if I die and no one notices and the cats eat my corpse?" But I don't think these anxieties are irrational or have increased in any way.

- Irritability - again, no more than usual. My Mom always said that I "don't suffer fools gladly" and that's is and always has been true. I have had so many job performance reviews where I was criticized for being brusque...

- Difficulty sleeping - not any more! I have been insomniac most of my life -can't get to sleep and can't stay asleep. The past few months I have been sleeping for England - 10 hours a night or more. This after years of 6-7 hours max.

Fatigue - Yep, this is a box I can tick. But again, so more so than usual. I have always put being tired down to chronic pain and I genuinely don't feel any tireder than I ever have.

- A rapid or irregular heartbeat - Yep, another box I can tick, but this seems to be pretty well controlled by bisolprolo (beta blocker) and enalapril (ACE inhibitor)

- A fine tremor of your hands or fingers - I can't see this, but the first endo I saw said she could, the second one said he couldn't.

- An increase in perspiration or warm, moist skin - I don't really feel any sweatier than usual. I had an early menopause at 47 and it seems like it reset my thermostat because I have been over-heated and a bit of a sweaty Betty ever since.

- Sensitivity to heat - As above - I have been over-heated for 7 years and this does not seem to be getting worse.

- Weight loss, despite normal eating habits - I WISH! I am gaining weight. (seriously, the only attractive side effect of this bloody disease and I don't get it)

- Enlargement of your thyroid gland (goiter)- another box I can tick

- Change in menstrual cycles - N/A (they are all over, thanks!)

- Erectile dysfunction or reduced libido - Can't say yes to either of these

- Frequent bowel movements or diarrhea- Nope, I have been constipated for months despite good diet, plenty of water and lactulose.

- Bulging eyes (Graves' ophthalmopathy) - no, thank goodness

- Thick, red skin usually on the shins or tops of the feet (Graves' dermopathy) - another No, thank goodness.

So this leaves me with fatigue, rapid heart beat and enlarged thyroid gland as my expressed symptoms of Graves'. Not a lot to monitor.

One thing I have noticed in the last couple of months is a really strong SUGAR craving. All my life I have been the savoury type - offer me a choice of crisps or chocolate and it would be crisps every time. But lately, I am craving sweets. I suspect this is behind the weight gain; I just need to stop indulging my cravings and buying sugary foods.

I was talking with a friend yesterday and telling her that I felt as good as I ever do before I had the attack of AF and she suggested that maybe felling good was something I should look out for, What a sunny idea - when I am feeling well, it means I am hyper.

Anyway, this is just a ramble for me to think about how I am going to "get better at recognizing my hyper symptoms". I am sure this is as boring as shit to most people.

[helvella]

So that there is no confusion, or at least less confusion than might otherwise be the case, I would like to add this comment.

Two things are mentioned by name:

- Bulging eyes (Graves' ophthalmopathy) - no, thank goodness

- Thick, red skin usually on the shins or tops of the feet (Graves' dermopathy) - another No, thank goodness.

Though both are commonly associated with Graves Disease, either or both can also occur in people who have hypothyroidism, and in some who have no obvious thyroid hormone abnormality whatsoever.

And both have several other names that are also widely used - which makes things even more confusing.

Rod

[TTLady]

Do you not take any medication for your hyper? You don't need every symptom of a condition to be suffering from. Denial is the biggest symptom we gravesters have. Never underestimate the power of a storm. Look after yourself x

[efilwol in reply to TTLady]

Yes, I take the usual CBZ and beta-blockers. The whole denial bit I keep hearing from other hypers is what got me into the navel gazing session. I genuinely don't think I am denying anything. I just have few symptoms and I can't for the life of me figure out who to get better at spotting them.

[merissa]

Hi there, you sound as bad as me, I go through stages of heart irregularities and I do ignore them, I shouldnt I no, my endo wants to tests for Graves, but others think Hashi arghhh, I have many of the smptoms you describled, your eating is related to Graves and you can also put on weight with it, rather than lose it.

I have a multinodular goitre( enlarged thyroid) nothing other. It seems when you have graves you matabolism speeds up and you eat more, do more and then you are exhausted.

I also have days why I am sooooooo hot and then days so cold, no sweating.

hope this helps, my periods are also scanty, hence my moods are everywhere.

chin up, try to establish the cause of Graves.

best of luc x

[efilwol in reply to merissa]

I certainly do not ignore heart problems. That's a good way to end up dead. I was diagnosed with Graves by a genuine professional endocrinologist on the basis of greatly increased thyroid antibodies.

If I could establish the cause of Graves' (or any auto-immune disease for that matter, I might win a Nobel Prize. (that's be nice)

[Jackie]

Hi Are you sure that you have had TSH, T4 and Free T3 all tested. Also the other tests associated with thyroid disease If auto immune thyroid disease, eg thyroid antibodies,you are quite likely to have many more auto immune diseases. Especially make sure you have been tested for diabetes, both Glucose test and Hb1Ac.The eating etc sounds as if it might be pre diabetes, the diabetic diet should help that

A good hospital tests the thyroid in casualty if presenting with cardiac problems! .It is well known that thyroid disease can bring on early onset of AF, ie it would have happened any way, eventually. AF does get worse with age. Your treatment is the first choice, there are much better drugs if needed and procedures. make sure you are on Warfarin as essential with AF because of the high risk of clots. In itself AF not very serious and very common. however vital clots are prevented. Make sure you are seeing a good arrythmia, specialist cardiac consultant ( large, teaching hospital)and because of the problems you have just experienced a very good endocrinologist, both of these are vital. Do all your research first and do not rely on GP`s choice!

There is a way out of all this but make sure you get the treatment you want/need.

best wishes,

Jackie

[efilwol in reply to Jackie]

Yes, I have had all my thyroid hormones tested and antibodies (got 'em in spades). also been tested for diabetes and its a nope, thanks

And yes, A&E did test my thyroid (Free T4 = 52 and TSH = non-existent) I don't think you need the ranges to know that was not great. It was down to 47 five days later when I was tested again, so heading in the right direction.

I saw a specialist in heart arrhythmia at The Heart Hospital in London which has lots of bells & whistles and even Dr Foster rated it at a top hospital:

nhs.uk/Services/Hospitals/O...

Anyway, he said that he felt the attack of AF was solely due to Graves, as my echo-cardiogram showed no heart defects at all except for a slightly dilated left atrium and some trivial mitral valve regurgitation.

His advice was that since my AF had lasted less that 48 hours and had spontaneous resolved itself, my stroke risk was low (CHADs score of 1). He felt that in my situation, the dangers of warfarin outweighed the potential benefits. He felt that the 10 days or so I had been on injectable anti-coagulation was sufficient, so I could stop.

Seeing a new endo on Tuesday - Dr Steven Hurel,

uclh.nhs.uk/OurServices/Con...

The NHS has been pretty good to me so far, aside from my disastrous night in the Acute Medical Unit.

[Jackie in reply to efilwol]

Hi Sounds as if you have been well looked after. Make sure you have had a Free T3 test as very important too.Pleased you seem to be getting some where, it does take a long time.

Best wishes,

Jackie

[efilwol in reply to Jackie]

I seem to get getting an pretty well with the NHS on this issue so far. I think it may be because my home hospital is a very large teaching hospital.

[Jackie in reply to efilwol]

Hi It certainly makes a huge difference. My 2 nearest hospital kept trying to kill me , where as the hospital I now am meant to go to ,listen to me and do what I say.! Unfortunately there are useless doctors some places, just like other things. The main thing is to be keep an eye on all treatment your self ,not easy when I am in a coma!.Quite a few of my consultants are going to emigrate when they retire as they say the hospitals here are too dangerous!

I hope you are soon sorted out and feeling much better.

Jackie

[It0022 in reply to efilwol]

I know it's been lond but how was your new endo from then?

[twinks]

How can you know with little or no symptoms?

I have hashis and one time got a phone call from a panicked gp, saying they were overdosing me and to cut meds by half. When I had appointment was asked how didn't I know with symptoms ? Well, I always have palpitations and often hair falling out feel crap all the time joint pains, none increased so how could I know.

Anyway cut meds, got worse back hypo so gp had to put meds back the same as they were.

Lol I got told off for not knowing I was ill but when I go gp feeling ill they take no notice.

[efilwol in reply to twinks]

Yeah, sounds like we have similar problems. I have always been a sort of hyper person anyway, always busy, always talkative, always a bit restless. I am hoping that keeping a journal will help me see some patterns maybe.

[greenginger]

Hi the problem seems to be that you have symptoms from other illness which is blocking your ability to recognise when you worsen.

The best check is regular blood tests and meeting with an endo at least every 3 months. You say you are not suffering any noticeable symtoms but denial and snapping at others opinions and being aggressive with doctors can be a symptom. Or it may be your personality.

I know that I will probably get deleted for this comment but hey I am a hyper too and speaking my mind is yet another issue for us Graves/hyper peeps. Seems this is not acceptable to be yourself on here so deletion here I come.............

[efilwol in reply to greenginger]

I think you are right about the "co-morbidities" (as the docs would say) confusing my ability to recognize what things in the mix are Graves' things. I am so used to feeling like crap from chronic pain that maybe I just don't recognize the Graves' crap.

I am seeing a new endo on Tuesday and I will see what he says. The guys I saw Friday said they will probably test me every 6 weeks for a while, just to keep an eye on things.

I do have noticeable symptoms - largely cardiovascular. These, thankfully, are now pretty well controlled with drugs. My heart rate is back in the 70s and BP is the best its been for years. So there is not a lot to notice on that front.

As for me being a bitch, that's nothing new. It came in really handy in a lot of my jobs so I cultivated it (yes,there are jobs where being a pushy bitch is pretty darned handy). I never ceased to be amazed at how just plain dumb some people are, how some people can't even formulate a simple Google search to find the info they need, how they don't scrutinize the source of the info and are willing to accept just about any nonsense because someone told them or they read it somewhere. (arrogant much?) I find it deeply depressing.

As I have said many times, I sincerely do not think I am "in denial". You can't deny what's just plain not there.

And so my solution (for no) is to diarise things - jot down a few vitals, comments about how I feel, mood etc and then review it with my bloods when I have sufficient data and see if I can see any patterns.

I can't imagine anyone deleting you for these benign comments. As you said, being blunt seems to be a Gravesian trait.

As I always say, I am not A bitch. I am THE bitch. And it's MISS Bitch to you,

[greenginger in reply to efilwol]

Yep but if you are in A & E with heart probs, there is a problem so seriously you ARE in DENIAL.

and thats MRS B---- to you!

[efilwol in reply to greenginger]

I was in A&E because I knew I had a problem. I don't get how that is denying anything.

I woke up, I felt weird, I called the GP, I went to see the GP, he sent me to A&E. I was treated in A&E and the Acute Medical Unit, I had follow ups with my GP, an endocrinologist and a heart arrhythmia specialist. I changed and adjusted some drugs as recommended.

If that's me denying a problem, I wonder what it would be like I was being accepting it?

[greenginger in reply to efilwol]

I was just saying that if you end up in A & E but dont believe that you have any health issues then there may be some denial. Seriously though its your life and I hope you are ok.

[efilwol in reply to greenginger]

I never said I had no health issues, What I was writing about is not having obvious symptoms to track when the endo says I need to get better at recognizing when I am hyper., I know I have a disease - several in fact!

[editfmrt in reply to greenginger]

I wrote a very detailed response about denial and some of the things you have posted to efilwol last night. It was so difficult to express and frame it correctly to ensure no offence was caused that I ended up deleting it.

I think the symptoms and traits of hyperthyroidism are much more insidious than recognised. We are all different but that was the case for me. Despite what people think, in some cases it can take a very long time to get to the acute stage with all the typical and quite dramatic symptoms.

And along that long journey Graves become my personality - impatience, outspoken, opinionated, obsessive and even aggressive feelings - which thankfully I managed to control but with great difficulty.

I hardly recognised any symptoms until AFTER I started to get better. My behaviour was totally bizarre but at the time I steadfastly refused to believe I was ill and got even more angry at any suggestion of illness - I thought it was everyone else was insane and I was perfectly normal. For God's sake - eventually I wouldn't leave the house even for five minutes without stuffing blocks of cheese and bottles of water in my pockets. Of course I wan't ill - just hungry. What's wrong with that?

Of course I'm not suggesting all hyperthyroid's are insane - just that judgement for some can be shot to pieces.

I'm sorry you feel sharing your views could merit deletion - I haven't felt the same but would be extremely upset if I thought I did say anything out of place.

This is a very passionate subject and it is no wonder with all the stresses of getting even adequate treatment that the written word without the benefit of body language means that well meaning posts could misinterpreted.

[efilwol in reply to editfmrt]

I am thick skinned (that's years of being a broker) to you can say what you'd like to me.

So far, I am not leaving the house with my pockets full of cheese.

[greenginger in reply to editfmrt]

I agree totally with what you said.

[efilwol in reply to greenginger]

About the cheese?

[Nathalie70]

My main symptom was anxieties, I couldn't check any other box either for 2 years. Only after 2 years, I started to have muscle stiffness and pain. My resting heart rate never went over 100. Some symptoms are very minor and difficult to stop like having a dry mouth or losing your hair a little.

Your various pains can simply be a major symptom of your Graves. And are you sure you went through menopause? or is it another symptom of your Graves. I have a private gyneaco and it's only through a pelvian exam done at the 14th day of my menstrual cycle that we saw that I was perfectly ovulating. Otherwise, I had all the signs of menopause at 42, which actually were signs of Graves. Graves is a complex matter.

[efilwol in reply to Nathalie70]

Most of my pain is due to arthritis. I have arthritis in both my feet, my left ankle and both knees. I also have carpal tunnel in both hands (worse in the right). And lateral & medial epicondylitis in both elbows and DeQuervain's tenosynovitis in both hands. And most recently I have developed Complex Regional Pain Syndrome following some surgery to try to correct my right foot so I could wear shoes and all.

Because I have so much symmetry in my symptoms/disorders, I was seen by a rheumatologist to rule out RA or other rheumatoid disease. And they could find no rheumatoid factors (in my blood or elsewhere). I have twice been diagnosed with "borderline fibromyalgia", but that's such a dustbin diagnosis.

As for menopause, yes, I am pretty sure. I had several FSH tests and my ovaries were definitely in their last hurrah. I had a few other menopausal symptoms - very heavy & erratic periods - sometimes 2 weeks apart, sometimes 2 months apart. And hot flushes and sweats that never went away. I haven't had a period in 7 years and I am 54, so I am pretty sure that was the menopause train that went past.

I was rummaging through some paper work and I found an old copy of a blood test from 2 years ago - everything was normal. I actually had a TSH that could be recorded and both T3 and T4 were smack dab in the middle of the ranges. Ah, the good old days.

And, yes indeedy-do, Graves' is a puzzler alright.

[editfmrt in reply to efilwol]

Well if I can say anything to you efilwol - I'll ask you a couple of questions and after that I will shut up.

How come you have pain due to arthritis and then you confirm no rheumatoid factors have been found?

Then you go on to talk about carpal tunnel, complex regional pain, epicondylitis, DeQuervain's tenosynovitis, erratic periods, hot flushes and sweats, early menopause. I agree with you about fibromyalgia being a dustbin diagnosis a jolly good excuse for multiple symptoms without a known cause is my personal view.

So - you say you don't have many symptoms of hyperthyroidism. What do you think these conditions are caused by then? Perhaps it's just bad luck in your case.

These are ALL common symptoms of thyroid malfunction - I had the lot including tennis elbow which I now know was caused by severe muscle weakness which caused me to overuse my joints to perform simple tasks like opening jars and peeling potatoes.

Luckily for me I didn't get individual misdiagnosis for all my hyperthyroid symptoms and they all mysteriously disappeared with adequate treatment - except the early menopause of course. The neglect went on too long for that to be rectified.

Here's a link to the relationship between thyroid and DeQuervain's tenosynovitis

gaortho.com/hand-surgery/fi...

I didn't think there would ever come a day where I agreed with the opinion of an endocrinologist.

I truly wish you well and hope I have not offended you.

[efilwol in reply to editfmrt]

Damn, I wrote a long, thorough response and it went "blip" into the ether. Will try again later (and will learn to write comments in Notepad first rather than straight into this web page)

[editfmrt in reply to efilwol]

That is so annoying isn't it. It has happened to me a couple of times today as well. I try to remember to do 'copy' before I press submit so I can paste back if it gets lost.

[Kas65 in reply to editfmrt]

Hi,

I'm a hypo girl and reckon that must make me meek, tearful and over-sensitive if hypers tend to be pushy, outspoken, scary people

Just a thought on the arthritis comment :

"How come you have pain due to arthritis and then you confirm no rheumatoid factors have been found?"

Possibly it's osteo rather than rheumatoid arthritis.

Keeping a journal seems a good idea. Might try that one myself.

It does get frustrating trying to pin down your symptoms.

Good luck to anyone struggling with thyroid issues.

All the best,

Kathy

[efilwol in reply to Kas65]

Give that woman a cigar

[efilwol in reply to editfmrt]

Let me try to satisfy your curiosity again and hope that this time it actually gets published and doesn't go "blip".

There are two basic sorts of arthritis - auto-immune arthritis (like rheumatoid arthritis) and osteoarthritis. I have osteoarthritis, generally described as "wear & tear" arthritis. I have had arthritis for about 12 years near (since my early 40s).

Current consensus is that my arthritis is a consequence of being hypermobile as a youth. The way on musculoskeletal (MSK) triage doctor explained it to me was that if you have hypermobile joints and you stay very active, then you end up as an Olympic athlete. If you have joint hypermobility and end up being sedentary, you get crippled by it.

I was great when I was young - I could run very fast and do all sort of gross party tricks with my joints. But like most people I did not pursue a career in track & field and ended up in a job where I sat a lot and my joints slowly went from hypermobile to arthritic.

So, to answer your first question, that is where I think a lot of my problems stem from. The arthritis in my left ankle is post-traumatic as well (resultant from a very complex fracture). The hand & wrist orthopedist I am seeing also thinks that I have have what is called a "double crush injury" to my arms. This is when the nerves are compromised on both ends; at my wrists my carpal tunnel and at my neck (possibly) by the fall out from from and old road traffic accident. Waiting to have some spinal investigations to see if she's right.

And re: the diagnosis of "bad luck", that was exactly what I got from that rheumatologist I saw.

I find it interesting that "These are ALL common symptoms of thyroid malfunction", yet neither of the endocrinologist I saw mentioned that arthritis or MSK problems were symptomatic of Graves'. Muscle wasting, yes (especially quadriceps). But MSK , no. Anyway, I am seeing my third endo on Weds, so I will ask.

It would be great to think that all my various MSK problems are caused by Graves'. It would be great to think that, once my thyroid gets sorted out, all these MSK problems will melt away. I will keep my fingers crossed, but I sort of doubt it as 1) they all significantly pre-date by Graves disease and 2) when I had my thyroid checked for the first time in 2010 as part of a "general overhaul", my thyroid results were fine but I was still a collection of clinking clanking collection of caliginous junk (as The Wizard would say).

Shame that the link you post only says "patients with ... poor thyroid function" and then does not elaborate further as to what the connection between poor thyroid function & DeQuervain's tenosynovitis is meant to be. A couple of desultory passes at Googling "DeQuervain's" +thyroid turned up nothing, but I shall try again later.

Interesting to hear that you have also had CRPS. This is a new one on me, compliments of some surgery to correct the arthritis in my right foot. How did you get one with it? Do you still have it? What treatment(s) did you follow.

Anyway, maybe Grave's has been lurking darkly in the background for the past 12 years, messing up my joints and causing early menopause while craftily evading detection in blood tests. It would be truly miraculous if getting my thyroid function back to where it was 2 years ago when all was normal washed away all the sins of a youth spent running very fast and grossing people out at parties.

You needn't worry about being offensive. I don't ever the tiniest shrinking violet could take offense at your comments.

HTH

[marram in reply to efilwol]

I agree with editfmrt that many of the characteristics you list are amazingly similar to the symptoms of graves' disease.

I had many problems which were resolved when my thyroid was removed - although it IS true I got a new set of problems - but many of them were only obvious when interacting with other human beings.

If I had not had graves' as a teenager my front tooth would still be intact. But my father irritated me, I slammed the door and the handle came off and knocked my tooth out. Was the handle flying off a symptom? may be not..but my slamming it most certainly was. I hardly ever slam doors now. But I didn't think it was a problem at the time! I, too, spent my youth running very fast and grossing people out at parties. We DO have something in common...

[efilwol in reply to marram]

Maybe you also were hypermobile and it was never detected. It's a thing, check it out.

[marram in reply to efilwol]

I was certainly hyperactive and hypersensitive! I definitely didn't have hypermobile joints though I would have been extremely proud if I had, I think. I just used to gross people out by being offensive!

A few years ago I saw an old film and one of the characters was very scathing about students who were demonstrating, calling it a 'Hyperthyroid Cause'.

I immediately recalled that I was pretty big on 'Causes' in my teens, especially Ban The Bomb and Women's Lib, amongst many other more transient ones. It made me wonder... perhaps that is another hyper symptom.

[efilwol in reply to marram]

I'm still big on my causes and still proud to be a feminist and a pacifist (though maybe not at the same time)

[marram in reply to efilwol]

Me too, still both of those- pacifism especially: on a global scale, but it's harder work on a personal scale LOL.

[efilwol in reply to editfmrt]

Oh, and P.S. you don't need to shut up unless you want to.

[editfmrt in reply to Nathalie70]

You are so right Natalie about the menopause and Graves being complex. I'm sure if I had been older than 30 when diagnosed that menopause would have been used as an excuse for me too. They find a different excuse for every age range. I didn't get myself educated as it wasn't so easy back then without the internet. So instead, I had the menopause in my early forties. I now know how common this is with Graves. Thanks goodness it was recognised for you.

Incidentally, I dread to think how many hypo people have had unnecessary hysterectomies before being diagnosed too.

[twinks in reply to editfmrt]

You said early menopause with graves, is it the same with hashimotos cos my menopause all done by 42

[editfmrt in reply to twinks]

Yes apparently - lots of information if you google hypothyroid and early menopause. Here is just one link:

hopkinsmedicine.org/healthl...

[greenginger in reply to editfmrt]

Thanks for that info about menopause as I am 43 and having terrible period problems. My family is complete so bring it on is what I say!

[efilwol in reply to greenginger]

Yes, saying farewell to my periods at 47 was good riddance to bad garbage.

Get an FSH test if you are having bad periods. My first clue to menopause was that by periods suddenly became very heavy and erratic.