Hey guy I'm looking for some help (specifically from people in the UK)
So my health journey started last year in January I had already been "unwell" for a few months prior but I put it down to my stressful job, I left my [] job and decided to go back to education to work towards my []. Leading up to Christmas I starting getting a number of random symptoms this ended up affecting my mental health as one of these symptoms and still is ( crippling anxiety)so I had to give up my college placement. Anyway in January I experienced something very traumatic, not even a day after this event it's as if all my symptoms hit me all at once. I was delusional, sweating to the point my clothes and bedding was soaking my heart was beating out my chest that I could feel it in my throat, my body felt physically limp it was late at night so my partner took me to a&e were they done standard blood tests and check my obs, the a&e was so so busy that night with people that had been there since the morning I decided to wait in the car for my results they took so long (4hrs) just for blood results so I decided to go home they phoned me to inform me that my heart rate had reached 177bpm and asked me to come back to get rechecked in the morning? This was a weekend btw. Anyway after all of this I went to my GP which still runs on triage since COVID. I explained to her all of my symptoms in great detail and she said that she wanted to tackle them individually, she has run a number of blood tests, I've had 3 different endoscopys. I had explained to my doctor I feel this gut feeling that its graves disease and after speaking to other clinicians they have also said that my symptoms point towards graves. Anyway I ended up getting a bad flu and the start of the month which then led to a chest infection (I ended up experiencing and almost identical experience to the one above) my anxiety and mental health was that bad I had to move into my mother in laws for a week I phoned my doctor which called me back and said to me that it's probably just the new anti anxietys and that it usually gets worse before it gets better. I had her on load speaker so my mother in law could hear this conversation and she was in disbelief at how dismissive she was making comments like "what do you want me to do about it []" I had told her this full situation with a year of my symptoms being left untreated had been making me feel. (she never gave me any mental health support) which is protocol I contacted the manager and told her the full story and asked if I could change doctors... Which takes us up to now I had now been referred to an endocrinologist and have a doctor's appointment on the 20th.
I have only had these thyroid blood tests done
Free T4 levels
31|01l24 27.8 pmol/L
23|12|24 19 pmol/L
TSH levels
31|01|24 1.26mU/L
23|12|24 0.58mU/L
Also every time I had blood tests it shows I have a deficiency in vitamin D and B12
My symptoms-
Fatigue
Tremors (hands/legs)
Heart palpitations with fast heart rate
Muscle weakness
Random bruising
Sweating mostly at night ( I find it really hard to regulate my temp)
Irregular bowl movements
Random rashes (dry skin) never experienced issues with my skin up until the last year
Swelling in my neck
Weak limbs specifically my legs
Swelling
appetite changes
Brain fog/memory loss
Dizziness
Chest pain
Eye symptoms-
Enlarged lacmiral glanda in both eyes
Swelling
very watery
Random infections ( it's happened 3 times since last Jan)
Pain when moving left and right
Sometimes feels as if there is something in it
Blurryness.
I know this is a long post but I'm desperate for advice and guidance im terrified that was ever I have that is causing these symptoms is only getting worse and the longer I go undiagnosed the more irreversible damage it's causing to my body, also I already have a heart murmur and aortic stenosis which I'm scared because my symptoms are also heart related.
Written by
Lanaellen
To view profiles and participate in discussions please or .
Do you have lab ranges with your results? Ranges vary between labs, but your first FT4 results look elevated by most ranges.
Often with Graves thyroid levels (FT4 & FT3) become very high & TSH becomes unreadable (<0.01).
There are other reasons for thyroid levels to fluctuate. I think you need a complete thyroid test including FT3 (the active thyroid hormone) and thyroid antibodies. TPO & TG antibodies indicate autoimmune. If FT4 & FT3 become consistently over range you need TRab & TSI antibodies tests to confirm Graves.
I found opticians more helpful than GP to advise on eye issues. practices do not have the equipment to assess eyes & can write letter for referrals. In some UK areas those is done directly.
Book an eye check & advise them you have suspected thyroid issues.
Hey thank you for your reply, I have attached the ranges In my post above I have looked it up at my TSH levels are on the low side and my T4 levels are high, I'm just finding this really difficult to move things forward and advocate for my health my doctors is a small GP practice and it still runs on a triage system ever since COVID
I see date & test results but no lab range this might be eg (12 - 22) for FT4 but they can vary.
Is there option of another practice?
Many make use of private blood test arranged directly. This often gives you the information you need to make progress. Some doctors say the can work from private sample but it gives you strong grounds for them to repeat the right tests.
Samples taken by DIY fingerprick & via post.
See link for private companies with discounts with many packages & options.
Hey thank you for reply, on my blood results it only says how it's measured but not the ranges? I will look into private it's just very expensive and due to my condition I am not working at the moment.
Maybe not as expensive as you think for private testing; as an example, medichecks is £89 for vitamins and thyroid testing, and I think we get 10% off if you go to the thyroid uk link given above, so not cheap (especially when money is tight) but not as bad as I expected. They operate across mainland UK so Scotland will be fine (you could ask on their website chat to confirm if you wanted). But check the link to compare prices for all providers. If you can get your doc to test vitamins then thyroid only tests are more like £40. Also, if you do go for a private test, I'd recommend to start a new post asking for advice on taking the test as e.g. It's best to do it before 9am, and somewhere there is advice on how to do the test. Hope that helps, get well soon, and sending you good mojo and calm thoughts
Please add the lab reference ranges, as these can vary between different labs.
As PurpleNails advised, do get your eyes checked by an optician asap. If thyroid eye disease (TED) is suspected they may be able to refer you to ophthalmology. Most people who develop TED have an overactive thyroid and Grave’s Disease, whereas some have it with an under active thyroid/ Hashimotos (like myself) and a few have it who are euthyroid (no thyroid condition).
If TED 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. If eyes are dry/ uncomfortable/ gritty use preservative free lubricating eye drops such as HycoSan or Hyloforte. If you experience light sensitivity wear sunglasses (even indoors if needed). Above all, please don’t overdo it on Google images, as they show ‘worst case’ scenarios.
Hey thank you for your reply, I have attached the ranges In my post above I have looked it up at my TSH levels are on the low side and my T4 levels are high, I'm just finding this really difficult to move things forward and advocate for my health my doctors is a small GP practice and it still runs on a triage system ever since COVID ( could you pls look over my blood results) I've checked online and my T4 levels are definitely high but TSH are on the low side but not low enough, but I know I'm not getting tested often enough and they might be missing it as it does fluctuate. I live in Scotland and the health services have went down hill, my GP doesn't doctor anymore all she does is through anti anxiety meds at me or referrals! Im honestly at my wits end 😢 no 24 year old should be feeling like this I honestly feel 80 years old at this point
My GP initially diagnosed me with ‘ health anxiety’, suggested I saw a psychotherapist & offered me anti depressants. Joining this forum helped me realise that my symptoms were related to being under medicated thyroid wise/ key vitamins not being optimal and I followed forum advice to improve this.
They haven't even diagnosed me with that lol my previous doctor said to me she believes my symptoms are real but they can't figure out what's wrong with me, but they are looking at all my symptoms separate, especially my stomach issues, it's very hard to advocate for your health especially when you are my age and also a women. I would understand if my blood results have came back normal but they haven't, I've asked on numerous occasions for t3 levels to be checked but they don't do that test at my GP practice never mind checking anti bodies. Do you know how it works for private blood tests (Scotland)
I’m sorry, I’m not aware of specific private testing in Scotland. Blue Horizon and Medichecks are popular with forum members.
Maybe start a new post with ‘Advice on private blood tests in Scotland’ as a title. Being specific in the title can help direct members to posts.
My initial symptoms were gastric related- it was a gastroenterologist who first suspected I had thyroid issues. For me, eliminating gluten helped resolve gastritis symptoms. It may be worth you fully eliminating gluten for a couple of months to see if this benefits you. Many choose to ask GP for a coeliac test whilst still eating gluten. Although I’m not coeliac, I’m certainly gluten intolerant.
Ranges are given in brackets after the single value something like:
t4: 19 pmol/L (11-21)
but you have only put the single value. Maybe the ranges were not provided. You could ask gp reception to give you a print out of your full results and see if the ranges appear then. Say you want them for your own records if they get funny about it. It’s your legal right to have them so they can’t refuse.
Those symptoms could all be signs of Graves’ disease but hopefully it’s just vitamin deficiencies that can be addressed.
How is your low B12 and VitD being treated ? Also how are your Ferritin and Folate levels ? Some of your symptoms could be caused by low B12 and VitD. B12 is good and 500+ and VitD 100+.
I think there is a good chance some of your symptoms could be caused by low nutrients - and they can be fixed.
Because your problems could be related to nutrition doctors almost never think of it and even when they do they assume it is unimportant because they think everyone in the UK has a good diet and couldn't possibly suffer from nutrient deficiencies.
Just for info - some lists of symptoms you might find helpful :
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
New here-advice needed please
ANY ADVICE WOULD BE HELPFUL
URGENT ADVICE NEEDED
Update advice needed please
