Graves symptoms

[Amymarg]

Hi all, I've posted before and would really appreciate some info (that I can't find online) after seeing endo yesterday.

I was diagnosed hyper in July and levels were pretty high, antibodies raised and enlarged thyroid. Taken until yesterday to see endo who has diagnosed graves.

The question is, how long does it take for graves symptoms to present if untreated? My doc said the usual symptoms can take quite a while, such as weightloss, any eye problems etc. Endo has asked me to keep a diary. Wouldn't I have seen all the symptoms yet?

Answers much appreciated

[helvella Administrator]

You will find more than you might want to know by reading through the links below. Please do be warned, some of the information and images could be quite upsetting - read at a time that is appropriate for you.

(I know little of Graves disease myself. No personal experience.)

thyroidmanager.org/chapter/...

thyroidmanager.org/chapter/...

thyroidmanager.org/chapter/...

[Amymarg in reply to helvella]

Thank you so much helvella this really helps. Much appreciated

[helvella Administrator in reply to Amymarg]

I'd also point out that some signs and symptoms are not always as so often documented. For example, some people instead of losing weight actually gain. Possibly the reason is that they overeat (increased appetite is quite widely reported)?

Nothing is ever straightforward in this thyroid world - despite many medics regularly dismissing it as simple.

[Amymarg in reply to helvella]

My weight so far has fluctuated up and down just a couple of pounds, but I don't feel it's to do with thyroid somehow. My hip bones seem to be rapidly deteriorating, making it difficult to maintain my usual running routine, which I hate. I find runnthe only thing that combats the anxiety and worry. I also have early onset hearing loss which is progressive. I now where hearing aids in many situations. Endo didn't seem to want to commit to that connection.....

Thanks again, you're very helpful

[Qwerty12345]

Hi. Not sure how long my symptoms of graves were around before graves diagnosis a couple of years ago. Looking back, I may have had some minor symptoms that I didn't really take any notice of. However,in June 2014 I began to feel very definitely unwell - racing, pounding heart, extremely anxious - did not feel able to socialise or go into busy ebpnvironments - shaky and dizzy, eating loads but losing weight etc. Eventually went to gp in August and blood test showed overactive thyroid. Saw endo in October and diagnosed with graves. My recovery thereafter was straightforward - dramatic and speedy response to treatment (ptu) and felt a zillion times better within weeks. Stayed on ptu for a year and have now been off medication for a year. So far so good. Good luck. The images on google scared me so don't look! I've been fine and I think medical images tend to be worst case scenarios. My endo told me that extreme eye symptoms are not seen very often at all.

[Amymarg in reply to Qwerty12345]

Thank you! I'm wondering the same as you; I've had many symptoms for years without a diagnosis, particularly anxiety, terrible panic attacks and agoraphobia. It's upsetting to feel I've lost 20yrs of my young life without a diagnosis, if these symptoms are connected. If they're not then im just unlucky there!

My brother also has Graves and his eyes have been active, protruding and all the symptoms. He was a smoker though, so that hasn't helped.

Thanks for the reply

[Cat4health]

Hi, I've been actively hyper for years without any symptoms before. I would read everything thyroid related with a giant pinch of salt. I agree with Qwerty these articles and many doctors go straight to worst case scenario and no-one seems to have the slightest understanding or care to investigate why different people present differently.

Because I presented with little to no symptoms I found an endo (privately after 3/4 useless NHS apps, although yours sounds pretty awesome, would love to know in a pm who your seeing) who factored that in and put me on very low dose carbimazole. It got under control very quickly so I'm very glad cos a normal starting dose would have pushed me into hypo in weeks. Could be worth asking about dosing and symptoms.

More than anything I'd hope that you can trust yourself and your body and don't let anyone scare or threaten you.

[Amymarg in reply to Cat4health]

Thanks! I'm on 20mg of carbimozole but I don't want to take it for long periods of time in case I go hypo. My life is so busy right now with university :/ Endo was nice but I don't feel I have all the info. The appointment is so short and he's not willing to say whether my bone problems or hearing problems are connected, or whether I could have had this a long time judging by my symptoms. He did however look at my notes - I also have a regurgitating mitral valve. He confirmed that it is not significant, which is a relief!

Will pm you his details later

Thank you again

[Cat4health in reply to Amymarg]

Have they run a bone density for your hips? I have joint issues but perfect bones, a physio told me that thyroid encourages joints to loosen. I'm unclear from your description what the bone problems are but I'm very sorry to read about the other issues you've faced. I'm also in uni doing my doc n the stress doesn't help. It's worth looking at supplements too. Graves has been associated with non-absorption n so I take a magnesium-calcium pill for stress. I would highly recommend reading Elaine Moore- very informative and balanced writer

[Cat4health in reply to Cat4health]

Oh and she answers questions on her website- she's a superstar of the graves community as far as I am concerned

[Amymarg in reply to Cat4health]

Thanks ever so much Cat4health ! I'm looking for reading recommendations

My hip is giving way, typical of osteoarthritis degeneration. As I run, it occasionally gives way completely or seizes up. I've been working at an Orthopaedic Hospital lately and the Prof there agrees it sounds like OA, and thyroid can contribute to this....I'm a hobbling disaster!

[Cat4health in reply to Amymarg]

Oh I'm sorry to read that!! That sounds tough enough on its own with graves to complicate but maybe if you treat one it'll help the other. I hope you find something useful with Elaine

[Amymarg in reply to Cat4health]

Thank you!

[Amymarg in reply to Cat4health]

And no, they haven't run a bone density scan, so I'll push for more. They didn't seem to say too much really, although the endo was very nice. He didn't want to commit i think

[Cat4health in reply to Amymarg]

Oh I'd push for that, especially if you suspect osteoarthritis, I mean I'm not a medical doctor but it sounds relevant. I was told my gp could send me for one too, so...

[Alexkjones]

Hi. I have had graves for just over 2 years now. I've been on block and replace and then relapsed after 5 months so am now on titration method which initially sent me hypo but am now going hyper again on 5 mg a day. Haven't found the ideal balance point yet but I'm learning more everyday. I have read that having a low tsh for a long time e.g. 0.02 can cause osteoporosis so there is a definite link between faces and bone loss. Which is why they want to get our tsh up above 0.5 -1. Alex

[Amymarg in reply to Alexkjones]

Thank you Alexkjones . Unfortunately my hearing loss and tinnitus appears to be connected, which was diagnosed in 2007, so I am at a loss as to how long I have had graves. Thanks for your input, much appreciated.

[Amymarg in reply to Amymarg]

Ha! No problem, I assumed you meant that

[Alexkjones]

No worries. I had a typo before. Faces ! I ment graves.