So I'm still trying to work out what this diagnosis is all about and what the situation is.
I just want to know if there is anything we can do personally to improve Graves - eat a certain diet, avoid certain things, exercise more. I asked the consultant and she said no it doesn't work like that. I don't like that answer 
I want to feel like there is something I can do?
Any tips?
Hi Miss_slinky
I’m no expert on this but I found cutting out caffeine and spicy foods helped ease the symptoms and improved how I felt but I doubt it had an effect on the thyroid level..
Are you taking any medication?
I think cutting out caffeine may be a good idea - I am run on coffee being the mum of a super active 20 month old! I am on carbimazole and switching to propylthiouracil tomorrow...
I was on carbimazole and it didn’t work for me and I felt terrible until I was put on the propylthiouracil then I started to feel better... my endo told me that I could exercise but only go gentle. Then again I did have a racing heart... I take it this has only just been diagnosed?
Hyperthyroidism was diagnosed in February but only just seen endocrinologist last week who diagnosed Graves’ disease. My heart rate used to be under 60bpm resting but it was 108 yesterday. I kind of feel like someone is going to push me out of an aeroplane, like the adrenaline feelings you would get - but constantly - it’s horrible
Yeah a racing heart is all part of it..
They will prob put you on tablets for 18 months which sucks.
I had graves for 4 years and they have only just removed my thyroid.
Graves’ disease is not something that gets better instantly it takes time and patience.. I totally agree with another reply and try and reduce stress.. thryroid Uk has a great community and there is loads of advice... if you need anyone to talk to about how you feel please feel free to message me... there was times like people wouldn’t understand how I felt.
Can I ask how the operation went and how you are feeling now?? I don’t know what to do as I want another baby and I’m 38 and not sure what to do. Endo suggested just going for operation - I’ve just got the diagnosis - it’s a lot to take in tbh
Hello
Of course you can ask.
Basically I decided to have the operation as I was trying (and still am) for a child and the endo told me having radiation treatment would mean no kids for 6 months and then told me they might have to do it again if it’s unsuccessful. So I told them I wanted the op ( which they didn’t want me to have)
The operation went really well.. yes you get all the scary talk about what could happen. But In today’s technology the chances of that happening are so slim... I won’t lie I had the worst sore throat of my life but it only lasted two days.
They told me healing would take 2 weeks... try more like 6 as although the stitches are out your neck is quite sore and it’s a big change to your hormones.
I spent 4 years feeling like shit with graves and now I had my thyroid removed I feel so much better. For me it was the best decision..
Hi mythoridlife:
So glad you are doing better post TT! My Graves had reached the point of no return as well as my huge goiter - and while I didn't want to have the op, I had no choice because of the goiter crushing vocal cords and windpipe. My recovery took a bit longer than yours - about 8 weeks, and I had some issues like uncontrollable crying and hives. And I did not have any surgical complications at all, unlike many on this forum, because I had a skilled surgeon and compassionate endo. My scar is almost gone now - just a bit red.
I, too, now feel much better post-TT almost 5 months later. I do not miss the buzzing sensation in my body like a taser was being applied 24/7, nor do I miss the heart palpitations or the mood issues - like snapping at people for no reason. In retrospect, while I miss having a working thyroid (obviously mine was not), I do not regret having the surgery. These decisions, of course, are extremely personal.
For me, the biggest adjustment (and still ongoing) is finding the right med combination for my condition. I'm getting there - and am pretty close now, and remain hopeful that I'll be completely OK soon. Sounds like you are OK in that regard.
Sending you good wishes (and good luck with trying for your baby) and continued good health for you.
Thanks for sharing. Glad it went well for you and also wish you all the best in trying for a baby! Why didn’t they want you to have operation? Is it a big scar? How do you feel now?
I think they didn’t want me to have the operation because it cost so much money... honestly sometimes you can laugh at the NHS. After 18 months of tablets they told me that medicine wouldn’t help me in the long run then the next month the endo told me he was thinking about starting me on another 18 months worth... but all the time they tried to get me to have radiation treatment.. I had to see the endo and the surgeon 3 times before they agreed...
My scar isn’t too big. Being a male I have a wider neck than ladies so my scar may look bigger.
Honestly I feel amazing now it’s such a difference. My heartbeat has gone from over 100 to 80 and my blood pressure has come down. Yes it’s a pain in the ass taking a tablet everyday for the rest of my life but it’s worth it too me. If they offer you surgery I would take it.. my endo told me after my first 18months of tablets I was 50/50 on a relapse..
I also read that you was a runner... so was I.. they say that having a trauma can bring on thyroid problems and I didn’t have any issues until I ran a marathon. Within a couple of days I felt like shit and went down hill from there. It got so bad I had a thyroid crisis and was in hospital for 3 days
Oh wow - sorry to hear you’ve been through the mill eh?! Well done on a marathon...! I only got to a couple of half marathons, enough for me. I think my trigger may have been childbirth, had a horrible time tbh with my boy. I mean horrendous!
It sounds like the best thing for you to have had the operation. Endo suggested it straight away as I couldn’t be apart from my 20 month old for like a whole month, not feasible and I do want another kid. It’s a lot to take in tbh...
And sorry for being so nosy - got no idea about condition at all! Never heard of it
You are definitely not being nosy at all. Any question you only need ask.. people don’t realise how big thyroid problems are and especially Graves’ disease. I do feel for you but like everyone told me (and at the time I wouldn’t believe them) you will get better and once your on the correct medicine you will feel better.
I’m thinking of writing a book about the life of male thyroid problems.. believe it or not there isn’t a huge amount of information on men with thyroid problems. I think it effects 1-1000 or so I’ve read somewhere
Hi there,
One key to managing Graves is to AVOID STRESS ON THE BODY AND MIND - stressful situations trigger Graves.
You will need to make significant lifestyle changes to make a difference.
For example, if you push physically, you will need to allow for rest periods during your activity - otherwise you deplete your reserves and you will be exhausted and may experience heart palpitations that require medication such as beta blockers.
You need to find quiet time during the day to recharge - not optional if you wish to make a difference. Mental and physical activity stimulate the production of thyroxine and make you feel energized - and then you become depleted of T3 because you will push yourself- you will then have to stop what you are doing and you will feel ill. Read my posts to Lauren85 - she asked some questions that you may find interesting and I sent her some answers on managing her Graves.
I wish I had listened when to this advice when I was diagnosed with hyperthyroidism 25 years ago - before it developed into Graves. I ignored my doctors when they told me I needed to rest more - I thought - I feel wonderful and so energetic- what do they know? Well, turns out they knew a lot. Hope this helps and wish you well.
I can't help you, but this website might - it is packed with info that could be helpful :
Elaine Moore had hyperthyroidism caused by Graves' Disease. Eventually she had an RAI treatment which has left her with severe hypothyroidism.
Hello there Miss Slinky
I am with Graves Disease diagnosed in 2003 and treated with RAI in 2005 and then had to manage Graves Disease, thyroid eye disease and hypothyroidism. I have learnt of my situation back wards becoming very ill some 5 years ago with what I believe, were the long term consequences of radioactive iodine. I have received no help, information or confirmation of any of my most recent symptoms through the NHS, with only a low ferritin found in the extensive blood tests I was told I had had taken.
The Elaine Moore website is an excellent research tool. Much like this amazing website there are open forums and information freely exchanged, it is all things Graves for all Graves people and their families. There are sections on alternative and holistic options and much information as for what you can do to help yourself.
Graves is an autoimmune disease and as such it is for life, it's in your blood, your DNA.
There is generally a generic predisposition to the disease and it can be triggered by a sudden shock to the system, like a car accident or unexpected death.
It tends to be driven by stress and anxiety, and there are suggestions on the Elaine Moore website regarding diet, life style choices, relaxation and stress release techniques. The website is Stateside so there maybe some differences in medications available, but this is the most all encompassing website I have found.
Conventional NHS treatment is to medicate with anti thyroid drugs and generally this happens for a period of about 15 - 18 months during which time you maybe encouraged to have your thyroid removed or ablated as a final solution to managing this disease. If you can manage to stay on anti thyroid medication long term, this would be the best option, as living without a thyroid isn't much fun.
Having had my thyroid ablated, which is a treatment that burns out your thyroid in situ, rendering you hypothyroid the NHS treatment option is Levothyroxine - commonly referred to on this site as T4. I have now gone on to buying my own thyroid hormone replacements and treating myself and am getting my life back thanks to this brilliant website and the afore mentioned.
You can help yourself immediately by ensuring your essential vitamins and minerals are optimal as when hyper your body and metabolism will be running very fast and you may not be absorbing the vital nutrients that are the building blocks of your core strength and stability. Whilst your brain is in a " hyper " state your body will feel exhausted - so would suggest you cut right back on the running and conserve whatever energy you may have.
Sorry to hear you have been through so much...sounds quite a journey.
I haven’t run in ages tbh! And quit the gym personal training the other weekend. I found it hard to change my boys nappy at one point - just so drained and exhausted - I had energy for nothing.
I said to my mum I feel a mix of as if someone is about to throw me out of the plane for my first sky dive (just feel on edge and full of adrenaline!) and at the same time shattered.
I took my first 6 tablets of propylthiouracil this morning and it was disgusting - was nearly sick. They weren’t coated tablets and I just had this fizzy feeling in mouth and disgusting after taste. Not sure I could do these tablets - they are disgusting. Never had a tablet like it. Finding it all quite hard just now. But it is what it is...
That sounds like Graves' ! Your mouth may be drier than usual which won't help with the tablets. How many tablets are you taking in total in one day ? With PTU, they are normally split into a couple of doses, so if you're taking them all at once, there souldn't be a problem in spreading them out a bit (you could check with your pharmacist if you aren't sure about this). The only thing is, it's really important to take the full dose every day, which may be more difficult to remember if you need to take the tabs more than once a day.
The jitteriness you get from too much caffeine is likely to exacerbate some of your Graves' symptoms, so cutting down won't hurt.
Taking 12 a day - 6 in morning and 6 at night. They are foul. Just necked 6 there and feel sick. They aren’t coated tablets. I’m on 600mg a day as carbimazole for 4 months had done nothing. And I mean so much of nothing that an endo told my dr I wasn’t taking them?! Not looking forward to these tablets at all...
Yeah these tablets suck. I found I had to eat before taking them otherwise I would feel really sick.. you are on a high dosage but it won’t be forever after a couple of months they will bring you down and down until your only taking like 2 a day. Stick with it. Your doing great
Also I had to take my tablets with
Lots of squash as they taste like shit.
They are just minging 😂
Did you know? The ability to taste propylthiouracil is genetically determined.
Doesn't help, at all, but of passing interest.
PROP (6-n-Propylthiouracil) Tasting and Sensory Responses to Caffeine, Sucrose, Neohesperidin Dihydrochalcone and Chocolate
Agnes Ly Adam Drewnowski
Chemical Senses, Volume 26, Issue 1, January 2001, Pages 41–47, doi.org/10.1093/chemse/26.1.41
Published:
01 January 2001
Abstract
The genetically determined ability to taste 6-n-propylthiouracil (PROP) has been linked with lowered acceptance of some bitter foods. Fifty-four women, aged 18–30 years, tasted and rated PROP-impregnated filter paper and seven solutions of PROP. Summed bitterness intensity ratings for PROP solutions determined PROP taster status. Respondents also tasted five sucrose and seven caffeine solutions, as well as seven solutions each of caffeine and PROP that had been sweetened with 0.3 mmol/l neohesperidin dihydrochalcone (NHDC). Respondents also rated three kinds of chocolate using 9-point category scales. PROP tasters rated caffeine solutions as more bitter than did non-tasters and liked them less. PROP tasters did not rate either sucrose or NHDC as more sweet. The addition of NHDC to PROP and caffeine solutions suppressed bitterness intensity more effectively for tasters than for non-tasters and improved hedonic ratings among both groups. PROP tasters and non-tasters showed the same hedonic response to sweetened caffeine solutions and did not differ in their sensory responses to chocolate. Genetic taste markers may have only a minor impact on the consumption of such foods as sweetened coffee or chocolate.
Hi MIss_slinky,
Hang in there! It takes time to adjust - and I know it is very hard. Graves is a really tough disease - and you may feel worse before you feel better. Maybe you can take your PPU and eat a food you realy like afterwards to minimize the taste effect. I was on Tapazole, which kept me in remission for 2 years, so I have no experience with PPU.
pennyannie has given you some good advice aboaut vitamins, etc.
Keep us posted on your progress and wishing you all the best.
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