New diagnosis - help!!

Hi all

I need some advice on the news I received Friday night that I'm suffering from an overactive Thyroid :-(

Short history: I was ill at the start on Jan with the flu. Typical horrible flu symptoms for a week or so, complete with hacking cough, followed by a very sore neck that went on for weeks, muscle pain, tiredness, aversion to cold etc.

After six weeks of generally feeling rubbish, I went to the doctor who checked my neck, said my thyroid was enlarged, and prescribed me antibiotics for my cough. Within two days, I was feeling loads better. Cough more or less gone and neck pain/swollen thyroid back to normal.

H also sent me for a blood test which I had a week later. I almost didn't go because I was feeling better but though I may as well get it done. Anyway this week the results came back showing I have an overactive thyroid and my doctor said the main cause of this is Graves' disease!

I'm totally shocked, if anything I thought it would be under active due to the tiredness, aches and pains and aversion to cold.

Looking at symptoms of hyperthyroidism, I perhaps have a few.. But it's so hard to know what are genuine symptoms and what are caused by the anxiety of this diagnosis!

On top of this, I've been training for the London marathon in six weeks and my doctor has now said its unlikely I'll be running in it, which has left me devastated! All that training and just when I was feeling so much better to be told I won't be doing it :-(

He's put me on just 10mg on Carbizamole and referred me to a specialist.

I guess my question is... Has anyone else had a similar experience? Could these thyroid problems be due to the flu/inflammation of the thyroid? I'm really scared about having Graves' disease. I've been so fit and healthy all my life and to be honest I've probably scared myself by reading too much on the internet.

Can anyone give me some advice or reassurance?

Thanks in advance

Becki

27 Replies

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  • Sorry to hear you have Graves. I have it too, I don't think it started after flu but I can't remember because I had symptoms for a long time before it brought me to my knees. Like you I has been healthy all my life - I suspect I'm a lot older than you though - I'm 65. I started off with 20mcg Carbimazole from my GP and that was increased by my consultant by letter after a blood test I had done after I had been taking the carb for a month.

    My hospital treats with block and replace so when I saw a consultant in person - about three months after I was diagnosed, they added in thyroxine. By that time I had gone under active which wasn't much fun - my body felt like it had been run over by a bus - so you need to have regular blood tests or more regular than I had at that time, you really don't want to go from hyper to hypo of you can avoid it. I had lost a lot of weight by the time I got to the doctor, I had all the usual Graves symptoms, indescribably tired, I was forever cancel things because I was tired - I think people thought I was a real wimp, I had an incredible pounding heart, my body felt as if it was just one big pulse, it woke me up every single night,I was stressed and nervous, my thigh muscles became so weak I couldn't get myself up off the ground without either help or something to hold on to etc. if you look at the TUK checklist - I ticked all the boxes.

    The good news is that a year on I have stopped all my meds and have been in remission for four months, I felt miles better once I got started on Carbimazole and got my levothyroxine sorted out although I had a slight blip every now and again when I needed my levo increased, generally though once I was being treated I felt pretty well.

    I used to do a lot of walking and I had gradually stopped all that but I am back to walking and cycling again and just generally running about doing all the things I want to do so the good news is that there is light at the end of the tunnel.

    Such a shame about all your training, I suppose what you can do all depends on how you feel and you seem to be feeling ok. I felt incredibly ill by the time I was diagnosed, I couldn't have trained for a marathon, I could barely get out of bed, although I did keep going to the gym - I cut back on everything I did - I only really went for the company and as a perverse way of proving that I wasn't as ill as I felt, I kept up my Pilates too, my teacher is a qualified physiotherapist and also had experience of thyroid problems in her own family so I was able to keep going with everything modified to suit how I felt and what I could do on the day.

    Must admit that I cut out all the freelance work I had been booked for,(I was worried about being unreliable) and I also got as much rest as I could, I did next to nothing in the way of housework and was lucky that my husband was prepared to cook and shop. I treated myself like an invalid fir the while I felt most ill and I think it paid off.

    I also took 1000mcg slow release VitaminC with zinc every day - my pharmacist recommended that when I started the carb.

    My B12 was low so I supplement with sublingual B12 Methylcobalamin, I take CoQ10 too as well as Vitamin D ( that was low too) and I take five Brazil nuts a day to keep my magnesium topped up. There is a good little video posted on the site about the vita you need to help T3 and T4 work.

    Anyway, sorry to ramble on , good luck with it all and I hope you feel better soon, like you years ago I was checked out for symptoms of an under active thyroid and my then GP was surprised to find I was borderline hyperactive - pity I hadn't been treated way back then. :-)

  • Hi Beckiboo.

    You have found your way to a really good site with lots of good people who will help you through this.

    The typical stereotype that the medical professional like to portray of hyperactivity really annoys me because too many of them subscribe to the view that ALL hyperactive people have mounds of energy and run around in summer clothes in the height of winter.

    The thing to remember is that we are all individual. Some may indeed have all or some of the typical symptoms but others may not. In my case, the fact that I was exhausted and cold all the time meant they missed the diagnosis despite other glaringly obvious signs.

    Unlike you, my eventual diagnosis (incidentally prompted by me) came as a huge relief because I was so ill and virtually unable to function that I thought I was going to die. That missed diagnosis nearly was the death of me.

    The good news for you (although you probably aren't thinking this right now) is that your doctor has been vigilant and diagnosed you quickly. This gives a much better chance of getting you back on the road to recovery quickly as there is less long term damage to repair.

    The symptoms you describe as 'flu' can actually be the signs of hyperthyroidism. The levels of antibodies can wax and wain and in the early days there may be periods where you can feel o.k. but not 100%. Also, with autoimmune disease, immunity is lowered and you may have developed a chest infection that caused your hacking cough and the other symptoms were from the hyperthyroidism. Antibiotics will not help flu but may have helped the cough if it was bacterial.

    Although it's my personal view, I think your doctor is very wise to suggest you should not run your marathon. Although it is obviously very disappointing for you after training so hard, your longer term health and getting back to full fitness (which is perfectly possible) should be your first priority.

    As for scaring yourself by reading on the internet - again a personal view - I think researching and becoming knowledgable about this is extremely important. I only wish this had been available when I was diagnosed. I'm convinced if I knew then what I know now I would have recovered sooner.

    Sadly, many GPs and Endocrinologists are woefully inadequate and ignorant about treating thyroid conditions. It sounds like you may have struck lucky and have a good GP

    Either way, getting educated will mean you will be in control and work with them on an equal footing.

    It's perfectly understandable you are worried and upset. However, there is no reason why you cannot get back to optimal health, especially by learning what works for you, being aware of what's happening to your body and looking after yourself.

    Keeping a diary of your symptoms, medication doses and asking for copies of ALL your blood test results is a really good start and will help you to see what works for you. Only people with less knowledge about thyroid conditions would accuse you of being obsessive!

  • Thanks both for your advice.

    I think the hardest thing to accept is that I've been diagnosed with this when I don't feel unwell anymore! With regards to the symptoms:

    I'm sleeping fine

    No heat or sweating problems

    Muscle aches now gone

    I have lost weight in the last month or so ( but I've also been marathon training so was expected!)

    My muscles have been a bit shaky - but again, nothing too severe to think its anything other than too much exercise

    I've felt a bit breathless when running - but only after several miles (when most people would feel breathless)

    Is it normal to feel awful one week then feel totally fine the next?

    Is it likely I have Graves' disease or could re thyroid problems have been caused by the flu/virus?

    Apologies for the rush of questions but it's just all been a shock going from thinking I'm recovering after a bout of flu, finally feeling back to normal then being told actually I'm more sick than I thought!

    I'm with Bupa through work so going to ring them first thing tomorrow and hopefully get some advice.

    It's so hard to determine what's the the hyperthyroidism and what's normal! For example being talkative, I've had that my whole life! Does that mean I've always had thyroid problems :-)

  • My problems started with what I thought was a bug. Incredibly sore throat, fevers etc. Mine turned out to be subacute thyroiditis which begins with a period of hyper then goes to hypo and then a return to normal. Have they tested for graves?

  • Hi mm83. That sounds exactly like my first symptoms.

    To be honest, i actually feel pretty much fine now, my only symptoms of thyroid issues are weight loss and shaky muscles.

    I really need to see an Endo to see what my thyroid is actually doing. I guess they will test for Graves then. Im just praying that's not the case. The more i read about thyroid problems the more mine seem like subacute, the main issue being the very sore neck and ears at the start (which has now gone).

    I'll definitely keep updating the board anyway as this has been a great help when doing research.

  • If you can, get a blood test done before you see the endo. If it is subacute the tsh will drop quickly especially on carbimazole.If it's graves the tsh apparently takes much longer. Keep the underactive symptoms in mind just in case.

    Fingers crossed it isn't graves and keep us updated.

  • Hi Becki welcome to the site.I was diagnosed with Graves disease just last , onth so I am new to all of this too.Although it is the most common cause it is not the only one sometimes it is a temporary condition caused by a virus so this could be the case.Once you go to the hospital they will test for Graves antibodies which you might not have.Take it all one step at a time and use this site for support..I had guessed mine wad Graves as I had the eye symptoms which often go hand in hand with it.I started to feel better within a couple of weeks of taking carbimazole.Learn as much as you can about hyperthyroidism and do keep us informed as to how you go on.Take care and try not to worry too much which is easier said than done I know as anxiety makes symptoms worse.....best wishes kim

  • Hi Becki

    My hyperthyroidism started in exactly the same way that you describe. I had weight loss, sleeplessness, terrible heat intolerance with sweating and a swirling feeling in my chest. Following 2 FNAs and an ultrasound it appears I have a single nodule on my thyroid which is producing extra hormone and upsetting the natural balance of things. I did wonder if I had something I read about called 'de Quervain's' (not sure of spelling) which can following an infection of the throat/chest. I don't know anything about Graves but I am having a hemithyroidectomy soon which the consultant says may sort me out. Here's hoping! Good luck with your treatment.

    Discovery x

  • oh nooo i hope you get to run the marathon, im currently training for a 10km but again due all these silly symptoms i cant seem to get past 6km ! ive been having symptoms for years but each symptom is treated as a separate thing, tiredness, fatigue, hyperactive, anxiety, severe migraines, back ache, ibs, swollen neck, shortness of breath, puffy eyes.....im also n a healthy diet, gave up smoking, dont drink very often etc please let me know the outcome , i have a doctors appointment later today to discuss getting to the bottom of it, i just want to feel well thats all!

  • Thanks everyone. It's reassuring to know that other people have felt shocked like me when getting diagnosed. It's just been hard to accept when I don't feel particularly unwell! I think if I was feeling ill and was told about the hyperthyroidism I'd be happy that I finally knew what was causing my suffering.

    I really hope it's a side effect of being ill through January and my thyroid will stop doing any funny business and revert back to normal.

    I've booked my NHS appointment for 2 weeks time - seems ages away!! I remembered today that I'm with Bupa through work, called them and they do cover thyroid issues. They gave me names of three specialists at St Barts hospital, been trying to call them all morning but to no avail. Arrghh! Why is it when things are so important to you it feels like you can never get them resolved!!

    I also want to re-speak to my GP as he didn't really give me much information on Friday - just "you've got an overactive thyroid, you need medication, you need to see an Endo and no, it's unlikely you'll run the marathon". But no mention of what exactly was in my blood - is it majorly hyper? Or borderline?! What could have caused it?!

    I guess I have a million questions and it's hard finding someone to answer them right now.

    Will keep updating the site as I find out more...

  • Hi beckiboo, how did the endo visit go? Hope it was good news

  • Ok just got my blood test results in detail from the GP -

    T4 39.4

    TSH <0.02

    Can someone give me any more detail on what this means?!

    Thanks in advance.

  • Saw the Endocriologist today and also picked up my referral letter from the GP which states that I have an overactive thyroid, however am clinically Eurthyroid (which I believe means I haven't got any/many symptoms).

    The Endo suspects it's Thyroiditis rather than Graves but I've been referred for more tests to rule it out completely.

    I feel much more relieved now, although I won't feel totally happy until I know for sure.

    He's recommended a RAI Uptake test - can anyone reassure me that this is safe? I'm a bit wary of swallowing as he called it "a nuclear liquid" !!

  • Just to give a quick update on what's happening with my situation at the moment - incase there is anyone out there reading this and worrying about a new diagnosis too :o)

    My latest blood tests came back last Thursday showing "generally normal" thyroid function and negative for Graves antibodies. My Endo says he thinks it's now unlikely that I have Graves, and more likely have/had Thyroiditis, caused by my flu at the start of the year.

    Needless to say I am HUGELY relieved!! And also a bit put out by my GP for saying I "probably" had Graves - putting me in a panic for a couple of weeks, when infact, after Googling the symptoms, it seemed much more likely that I had Thyroiditis.

    When I searched the net, I couldn't find hardly any info or people's experiences about having Thyroiditis. I guess it's much rarer than Graves but CAN happen, so if you have been diagnosed with an overactive thyroid, make sure you think of this option too.

    My thyroid function seems to be sorting itself out again, and I feel much, much better. There is a chance I may now go underactive (Hypo) so I'm going to need more blood tests at regular intervals to manage this. But, in 6 months, all being well, I should be back to normal.

    I'm not going to to the marathon this year - just going to rest my body and get as fit as I can for my forthcoming wedding in October :o) Then come back with a vengeance next year!! Oh - and also to definitely have the flu jab this time round!

  • That's great news, really pleased for you. Yes, I would recommend the flu jab. I had real flu once and I never want it again, so I have a jab every year. Good luck for the wedding x

  • Hi Becki , only just read your post.

    I`m actually one of those " lucky" ones who thought i had Graves but eventually diagnosed with Subcute/ De Quarvains thyroiditis . They don't seem to be many of us on here , but fingers crossed for you as it's a self limiting condition and eventually you will feel well again and although about 10% of people can have relapses and a few may stay hypothyroid , it's at least not an autoimmune condition and the outlook is better .. fingers crossed for you ! :-)

  • I wish there was a collective category for Thyroiditis / De Quarvians / Subcute so that people like me and yourself and a few others could find out and share information on these conditions without always thinking it must be " Graves " :-(

  • Agreed, it takes a fair bit of digging around to realise there are other possibilities when first diagnosed overactive so anything that gives people a heads up would be great. If I'd known a bit more about it I possibly would have queried being on carbimazole for as long as I was which ended up suppressing an already underactive thyroid. Hey ho, hindsight, great isn't it?!

  • Hey Jacgood63

    Thanks for your comments - you're right, there is hardly any info about Thyroiditis on the web, and we do worry ourselves perhaps unecessarily with incorrect Graves diagnosis'.

    My latest blood test results came back this morning, showing that I am now "mildy underactive". I think this pretty much confirms for me that it's not Graves and it is Thyroiditis. It's a relief, although I am keen for the whole thing just to get back to normal really! Approaching three months now of feeling out of sorts and I just want to get back to normal without worrying what is going on inside of my body!

    Having said that, I feel ok now. I had about a week of feeling AMAZING when my thyroid was clearly on it's way down from being overactive. I now feel a bit more lethargic, emotional and extremely hungry all the time (uh oh.. here comes the weight gain) but otherwise I don't feel too bad.

    My consultant says the Hypo stage may last for a few months (or forever if I'm unlucky) but I won't need medication unless I'm feeling particularly unwell.

    I officially pulled out of the marathon last week - just not the time to be putting my body through that kind of strain, and if this Hypo stage gets worse there's no way I'd be able to run that far anyway!

    Looking forward to getting back to normal - lots of healthy eating, rest and exercise planned over the next few weeks whilst my thyroid recovers :o)

  • Hi Beckiboo83, sorry to hear you couldn't do the marathon in the end but there will be more and hopefully only one bout of thyroiditis!!! Fingers crossed that your thyroid bounces back but if you're dragging for too long make sure to go back and jump up and down a bit. I spent longer than I should have done finding things hard work and after 12 months have just had my thyroxine dose increased. Not quite the result I wanted after 12 months but hey! My sister on the other hand had thyroiditis, didn't have any thyroxine and recovered in about 3 months :)

    Healthy eating is a very good plan, my immune system was shot to pieces last year so caught everything going. Now blitzing fruit through a blender regularly and making sure to take multivitamins.

    Good luck with it all and enjoy your wedding planning!

  • I also wish my GP had waited for the results before prescribing Carbimazole , even though she took advice from an the hospital . The thing is i remember thinking i had a type virus at beginning at Sept that felt like ear and jaw ache but didn't connect it with the bout of hyperthyroidism a month later and by then the swelling had long stopped and I had been told by a previous GP is was just my glands fighting an infection - No one picked this up and I obviously had no idea they were connected due to the time lapse. I`m still not sure what type of virus I had , only that I didn't feel that ill at the time apart from a lot of a pain,and the most awful fatigue ever for 3 weeks before the dreadful hyper symptoms kicked in !

    Just hoping now that next months blood test shows i back into normal range ( As was on the hypo side in Jan ) ...Doc said recovery can be 6- 12 months , but if still hypo will ask to go on thyroxine as I still struggle with fatigue .

    At least I no longer feel alone now ! lol

  • It's a frustrating ride. I have a lot of time for my doctor but it's unfortunate that it is so uncommon. I had the flu and the worst sore throat I've ever had. I got sent for a chest xray which of course came back clear but it wasn't until after that I was diagnosed with a "throat infection" in addition to the 'hyperthyroidism'. It was the endo a month and a bit later who saw the big swing in test results, looked through my list of odd symptoms and worked out it was thyroiditis. I'm honestly not sure if my gp had seen many cases of it before!

    Fingers crossed for you Jac and rest when you need to :)

  • Thanks everyone :o) This board has been great for help and advice - especially at the start when I was in a major panic!

    @jacgood63 - I fell ill at the start of Jan and didn't see my GP for over 7 weeks desite feeling awful for pretty much the whole time! I wish now I'd not tried to be a martyr and just gone after 2 weeks when I was feeling really unwell. Had I got checked out then, I might have been on antibiotics and never got Thyroiditis, or if it was there anyway, at least I would have had about a month advance on the recovery! nevermind... it's certainly made me think for the future - if I know something's not right, go to the GP!

    It's all these websites saying you can't take medication for flu and you just have to ride it out. Clearly there are people (like myself) who actually a "upper respiratory tract infection" (as it was finally diagnosed) struggling on trying to fight it themselves, when a short course of antibiotics would have saved a lot of problems!

  • Live and learn hey?! I'm just pleased I was relatively fit and well to begin with as I can't imagine having had that on top of existing conditions. I'm not shy about going to the docs anymore. As you say, better to get something nipped in the bud early (or told to stop worrying!) than holding out and doing yourself more damage.

  • When i originally went to my GP, it was because I felt my breathing was being obstucted qith the swelling, he didn't even bother to feel my NECK and told me it was just my lympth gands fighting a virus and to come back in 3 weeks if they were still giving me problems. He actually laughed at me when I asked him if he was sure it wasn't my thyroid !!! ....When i started to get the most awful symptoms a month later I actually thought i had cancer ! Luckily i saw a different GP who did every test possible on me - i really think i was near to a thyroid crisis and had to have a month off work to recover ( Stone weight loss, dehydration, palpitations , how sweats, shakes , double vision ) I never ever want to go through that again ! ..........from now on I will always ask for a 2nd opinion and I won't be afraid to ask and research and question !!

  • I've never seen so many subacute thyroiditis sufferers in one post ;-)

    Luckily my doctor was pretty good, he diagnosed thyroiditis straight away but it was actually my first Endo who said i probably had Graves!

    From what you guys are saying, sounds like i was lucky, my symptoms were minimal. Its just funny looking back to all these strange things i was noticing and finally piecing it all together.

  • Yes I had all your symptoms before being diagnosed with hyperthyroidism. I remember going with my granddaughter swimming and I had to get out of the heated pool because I was so cold even though no one else was as cold as I was I also had flu like symptoms and a sore throat and neck and I too have a gotire. I struggle to loose weight even though I should be the opposite. Hope you gets back to normal soon take care carroll

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