hello thyroid uk
my first post here, I’ve just been diagnosed with Graves’ disease and one of my biggest worries is I won’t be able to do my part time gardening job anymore?
Just wondering if any of you have found once you’re levels are down you feel able to be active?
free T4 >100 PMOL/L (12.0-22.0)
TSH TRAB ANTIBODIES 59.0 IUL (<2,9)
TSH 0.01 MIU/L (0.27-4.2)
free T3 48.2 PMOL/L (3.1-6.8)
thank you
Welcome to the forum knitwearforever
So we can offer better advice, can you tell us more about your thyroid condition, eg ongoing symptoms, current medication & dosage, plus blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
thyroiduk.org/help-and-supp...
If you don’t have copies of any blood test results, do ask for these (or look on your GP online service if available).
Please be reassured that when your thyroid medication and key vitamins are optimal, you will have the energy to enjoy gardening & other pursuits you enjoy. It’s just important to remember that when a GP says normal/ within range, this might not be the same as optimal, where you feel most well.
I, like many others here, have turned my health around by sharing g results, reading posts and following forum advice. Keep posting, we are here to help & support! 🦋
Hi Buddy
Thank you so much for your reply, ive only just been Diagnosed 4 days ago so this is all a bit new for me. I hit my head really hard in September last year and got what I thought was post concussion syndrome , I went to the doctor a month after. My symptoms were dizziness, fatigue, and sensitivity to light and noise. and shaking hands. He told me my hands were anxiety and I just had to wait it out, and I have been until last week. I felt my symptoms weren't inproving, if anything I had developed more hot body temp, itchiness. I was stuck in a queue in a shop and read the back of a kelp supplement pack for thyroid condition. without really thinking about it I googled if concussion can cause hormone imbalances and it said yes. Went back to the Gp, and asked for a blood test my results were:
T4 >100 PMOL/L
TSH TRAB ANTIBODIES 59.0 IUL
TSH 0.01 MIU/L
T3 48.2 PMOL/L
I'm on carbimazole 20g twice a day. I've been having a bit of a reaction to it though, very nauseous, very sad tummy (if you know what I mean) and low energy.
no vitamin tests yet, would I have to request for these?
my grandma had lupus so I think that must of given me a pre-disposition to it.
Thank you so much for your reassurance, its going to be a bit of a journey I think.
In the first instance, you can ask your GP to test key thyroid vitamins. If you get no joy, you can look to do this privately (as many here do) following link I gave previously. I wouldn’t supplement ferritin, folate, B12 or vit D without testing these first (& sharing results with us).
Light sensitivity could be related to Thyroid Eye Disease (TED). If this is suspected, I recommend you take a Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed. For any dry eye, preservative free lubricating eye drops are important, such as HycoSan or Hyloforte. For light sensitivity, I wear sunglasses (even indoors if needed). Above all, please don’t overdo it on Google images, as they show ‘worst case’ scenarios.
For advice on carbimazole, I will tag in PurpleNails and pennyannie who are very knowledgeable on Graves.
Im sorry to hear you suffered concussion. Injuries can certainly trigger auto immune responses. I’m sure others, with more experience of this, will be along to offer further advice/ support.
hi, others will come along with good advice and questions on how you were diagnosed , your treatment and results. I will try to answer your specific question on gardening. When I was first diagnosed, I could only work for 20 mins. before being completely exhausted. A few months after starting treatment, things improved a little but then I wasn’t monitored closely and became hypo which was just as bad. So to answer your question - as long as you have the correct treatment and are well monitored there is every chance you can get back to your gardening. However, we often don’t get well treated. By coming on here and learning all you can about Graves is a positive step to good health
thank you so much, its so good to hear your experience. I've been doing one day a week since I hit my head but have found it pretty exhausting. But I really love gardening and surfing and swimming and feel worries I wont be able to do these things anymore, but thank you for the hope you've given me!
Hello Knitwearforever and welcome to the forum :
There is absolutely no reason why you can't continue to work once your symptoms are relieved by the prescribed medication.
Can you please share with forum members your TSH Free T3 and Free T4 results and ranges at diagnosis and the antibodies found positive and over range in your blood and the medical proof of diagnosis and the medication to be prescribed.
Graves is an Auto Immune Disease so there is likely a genetic predisposition and can be triggered by a sudden shock to the system like a car accident or sudden, unexpected death of a loved one, or for others it seems to come on ' simply out of the blue ' , and read that all this started for you after hitting your head and that you have a family member with Lupus.
If with Graves you will have bee prescribed an Anti Thyroid drug either Carbimazole or PTU - Propylthiouracil - and all this does is semi-block your own new daily thyroid hormone production while we wait for your immune system to calm back down again and your thyroid hopefully reset itself without the need for any medication.
The NHS generally allocate a treatment window of around 15-18 months with the AT drug and the hope is ' you find ' remission - and if not definitive treatment is discussed with RAI thyroid ablation being encouraged over having a thyroidectomy.
Are you being treated by the hospital endocrinologist or is your doctor taking instruction and monitor and dosing you in primary care ?
There should be regular 6 - 8 week follow up blood tests with the aim being to get your thyroid hormones Free T3 and Free T4 back into range to around mid point in ranges -
so neither too high and possibly dealing with hyper symptoms and not too low in the range and dealing with the equally disabling symptoms of hypothyroidism.
What symptoms are you currently dealing with, and has the head injury and concussion now resolved with no apparent ongoing issues ?
We do now have some research you might like to consider :-
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
When the thyroid malfunctions several sets of antibodies can be found over range and positive but if Graves antibodies are found positive - Graves treatment takes precedence as Graves is considered life threatening if not medicated.
When the thyroid malfunctions and runs too fast as in hyperthyroidism or too slow as in hypothyroidism the body will struggle to extract key nutrients through food no matter how well and clean you eat - and low levels of core strength vitamins and minerals, especially those of ferritin, folate, B12 and vitamin D can compound your health issues further - so please see if your doctor can runs these for you and we can explain where best these needs to sit to support you through this phase of ill health.
The most rounded of all I researched on Graves is that of Elaine Moore's books and website though I knew nothing back in 2004 when diagnosed and had RAI thyroid ablation the following year and became much more ill some 8 years later -
web.archive.org/web/2024122...
Hi, thank you so much for your reply, really means a lot at this stage as it's been quite a shock.
free T4 >100 PMOL/L (12.0-22.0)
TSH TRAB ANTIBODIES 59.0 IUL (<2,9)
TSH 0.01 MIU/L (0.27-4.2)
free T3 48.2 PMOL/L (3.1-6.8)
I'm on 40g of Carbimazole, 20g twice a day.
I've been referred to the Endocrinology department, so I am waiting to hear from them. But I have a blood test in 4 weeks.
My main symptoms are fatigue and if im walking anymore than slow walking pace my heart is beating so so hard. My skin is hot to the touch. I'm not sure if it's placebo but my eyes have felt much better. Very shaky hands but that also seems better. it's hard to know what is post concussion and what is hyperthyroidism, as they have a lot of cross over symptoms.
Thank you for all the links and help.
Total exhaustion and some sort of mind / body mismatch ?
Insomnia ?
Amidst the shaky hands - the middle finger when outstretched has a fine tremor ?
Light sensitive ?
Thinking of doing so many things but having no energy to complete a simple task and making a cup of tea even tiring and you need to sit down while waiting for a kettle to boil.
Stop, listen to your body and be selfish with your ' you ' and save your energy for things you enjoy - but no sea sports please - you haven't the energy to ride a wave let alone swim against the tide in a paddling pool.
No 2 peoples journey with Graves is the same and probably why it is so poorly understood though we do know that stress and anxiety are common triggers -
If your body doesn't like the Carbimazole and your stomach remains upset please ask to be switched to the alternative AT drug - Propylthiouracil - PTU for ease of speech -
it is an ' older ' drug and your dose may change - but there's no point taking a medication that does not suit you when there is an alternative precisely for this reason.
woah yes to all of those! I did call 111 last night and they said to take only one 20mg and rig my doctor tomorrow, classic its always on a weekend when these things happen!
If you feel unwell tomorrow morning and can't get hold of your doctor -
please phone 111 again as I believe they can make urgent on the day appointments in A & E and advise that an endo needs to be at the appointment.
If push comes to shove please go to A & E - do not wait - you are not making a fuss -
Graves is a serious health issue and considered life threatening if not medicated -
and it seems the medication may not suit you and you may need to take the alternative Anti Thyroid drug PTU - Propylthiouracil - so try not to worry.
I've just seen that you have given us the blood test results - so you don't need to keep repeating yourself.
Your results all look high - but we have no ranges - if you have them just press More bottom right within your post and Edit the results and pop in the ranges .
A TSH at 0,01 is usually Graves as the immune system antibodies are flooding your TSH receptor sites causing this low TSH reading which in turn is a signal to the thyroid to produce more and more hormones and causes hyperthyroidism and over range T3 and T4 results.
Rest up until the AT drug has a chance to do it's job, please do not take the kelp supplement you purchased as that tends to be iodine rich - and you don't need that -
and surf from your sofa - until your T3 and T4 levels come back down into range -
Light gardening might be therapeutic but certainly not catching a wave and surfing -
I was off sick just a week and then returned to work- with hindsight I should have stayed away but then I had been verbally assaulted and physically threatened by a man I employed as my assistant manager and didn't know any different and thought I should be there for the benefit other staff members while I started disciplinary procedures through the company I was working for.
Gosh Pennyannie, what an awful experience. I’m so sorry you went through this.
thank you so much for your advice, and so sorry you had such a horrible experience xx
pmc.ncbi.nlm.nih.gov/articl...
Article about Kelp and hyperthyroidism - have you been taking this supplement for a while ?
I havent taken the supplement at all, sorry for confusion, I was just reading it when I was waiting in a queue x
Oh ok - probably me not reading your post thoroughly - apologies -
though it's a much easier resolve if you were - just stop !!
40 mg. Carbimazole is quite a high dose. I presume you will have another thyroid panel in about 6 weeks. I would carefully scrutinise the results for signs you are on too high a dose and becoming hypothyroid. The following paper suggests 20mg. Is just as effective
Welcome to this amazing group knitwearforever. I developed Graves’ disease back in 2012/13. Took a while to get diagnosed as my symptoms indicated to various GPs that I might have been a hypochondriac 🤣
One of the most annoying earlier symptoms was that I found that when I was out in the field taking photographs was that I had no muscle strength in my legs / thighs and couldn’t get up off the ground without help. I still just thought I had too much stuff packed into my backpack.
I was always utterly exhausted but I was in my mid sixties so you have youth on your side. My first post on here was ‘will I ever feel normal again?’ And yes I got there.
I was treated with block and replace which took exactly a year, I’d say it took a bit longer for my body to get back to feeling ‘normal’ again - I had been hyper for a long time and was definitely given the run around before I got to a stage a GP realised my problem.
I found I was very, very tired before being diagnosed, totally exhausted really. I had retired and was working as an exam invigilator and eventually like you I felt worried that I might be unreliable so I was diagnosed in November and cancelled my dates for the Christmas exam session but I was back to work for the May / summer exam season.
I used to do a lot of long distance walking which I cut back on for quite a while but eventually I got back to that too as well as camping and holidays in our camper and lots of cycling and I kept going to the gym and my Pilates group, I just dialled down the amount of effort required but I didn’t want Graves to rob me of everything that ‘made me who I was’.
I am also a keen gardener and I can’t remember Graves stopping me although I imagine I got my husband to do anything really ‘heavy’ for a while. One of the most useful pieces of kit I had was those fold out gardening stools that you can turn upside down and use as a little seat and I found the handgrips on that really useful.
If you progress like I did I can’t see any Ed reason you won’t be able to get back to your part time gardening job.
I would look after your bones though as I am now 76 and have osteoporosis, unfortunately no one ever thought to mention the connection when I was first diagnosed with Graves and I missed out on time to take care of my bones with the right sort of weight bearing exercise etc.
So, get as much rest as you can, read as much as you can about Graves, look at what others on here have said, keep a record of all the tests you have had done, the medication you are taking, how you feel on them and any questions you want to ask your consultants. Don’t get rushed into making any decisions or get pushed into anything you aren’t 100% happy with. Oh and I always took 1000 mcg slow release vitamin C which I thought helped my recovery. Keep in touch.
🌳🌷🥀🌻🪴
Hello !
Thank you so much for your kind reply, really is so helpful and making me feel a lot better 💕
so good to hear that you could still do all the things you enjoyed. I think for some reason thats what im worried about the most.
What kind of weight bearing exercise would you recommend?
Glad it helped. Yes, no one wants to get stuck forever like they feel when they have graves!
I have done Pilates for a long time. The ladies in my group are all around my age and we all have something wrong with us, our teacher is a physiotherapist and is ultra careful with us - our teacher starts every session with ‘ Has anybody got anything new wrong with them since I last saw you? Then she reminds us that nothing should cause any pain and if anything does then don’t do it even if we’ve done it before or if she has told us to do it.
I like Margaret Martin’s - she’s a Canadian physiotherapist ideas, a lot of the exercises we do at Pilates to strengthen our bodies are very similar - you can stand and stamp your feet in all different directions, you can go up on your toes and do ‘heel drops’ those are really easy. Her book is good and I’ve got a couple of her videos that involve a lot of stamping in various directions.
The idea is not to do the same exercises all the time - you want vary what you do to ‘surprise’ your bones. I suppose things like Zumba or line dancing would work - I tried line dancing shortly before I was diagnosed with Graves and it just didn’t work for me partly because I am definitely not a dancer and partly because I was so exhausted I could hardly stand up by that time in the evening so I just stick with my Pilates, walking every day and stamping my feet. It would be worth looking at what Margaret says about lifting things - that would be helpful in the garden, it is very easy to overdo things out there.
melioguide.com/weight-beari...
Margaret has got some tips on gardening - probably aimed at ‘oldies’ like me and people whose bones are a lot worse than mine but worth looking at and there’s a link to sign up for a free course. She won’t pass your details on ar spam you either
I’ve always been very sporty, but found I needed to ‘slow down’ considerably until my meditation was optimised. I took up gentle yoga/ pilates and found this helped both my physical & mental health. For me, meditation also helped with anxiety symptoms (especially listening to a guided meditation- as my mind tends to wander without the instructions!🤣)
ah thats great to hear, ive been doing yoga and finding it good but wanting to push myself to were I was but good to know not to do that now! haha yes I used to meditate a lot but got out of. the habit but time to get back on the wagon x
Graves disease - blood results
Could I do with some T3 ?
Hi new here do I have absorption problem?
Blood results- have I been tested for Graves?
