Hi all I posted a few weeks ago regarding my ever rising over active thyroid. Since then I have had a blood test with my GP on 30.01.22. I had an appointment with my new specialist on 03.01.23 but she did not have my results. She really explained my condition and what was happening to me better than I have before. She is sending me for an eye test and she was a little worried with her exam she did of them. She also had a good feel of my neck and said she feels some swelling so is sending me for an ultra sound. My heart was racing also even after taking a beta blocker just 30 minutes before. I was still shaking significantly and the rash on the front of my legs is also a side effect I am experiencing (which I thought was caused by propylthiouracil which I have been taking since September). I also mentioned that I have not had my vitamins etc tested she is going to do a full blood count.
She said that she will write to me as soon as she gets my results and give me instructions of what to do next. She also said that the tablets can take up to 18 months to work for some people which I also read on here. She also was going to include a sick note as I have quite an intense job and 3 kids and she said that her rested patients seem to get well faster.
I had not received a letter by last week so I called my GP and asked if they had my results and if they sent them to my specialist and she said they had and I asked if I could have the results she just said that my TSH is 0.5 (my last results in august my TSH was 00.1) I asked what the T3 and T4 was but she said that she could only see TSH but that the letter said need to speak with a doctor. She said they had been sent and my specialist will call me. They did not so I called them again today and they said they have my results and just waiting for the specialist to look at them.
Have I had the right blood test done and also does the TSH look like it has gotten worse? I am really at my wits ends now and mentally I am really suffering. I am very short tempered and emotional and can honestly say I feel depressed and extremely anxious. I do not know if I can cope another 6 months on anti thyroid medication, and that is if its not 18 months of just propylthiouracil.
TIA Charlotte 🙂
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Chara87
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What happened between blood test on 30.01.22 & specialist appointment on 03.01.23 were you waiting a year for appointment. A full blood count is not same as vitamin test. So follow up on what they plan to test. TSH isn’t adequate information. You need thyroid hormone tested (FT4 & FT3) TSH can be very unreliable especially after being hyper. < 0.01 is undetectable but 0.5 is an improvement and may be in the normal range. but we’re your thyroid hormone are can’t be predicted by TSH.
With an overactive thyroid on top of an intense job and three kids I think you definitely need that time off. Do you know if you have been checked out for antibodies to see exactly what is wrong with you? This new endocrinologist seems to be doing a bit more for you if she is checking out your eyes etc. Hopefully when you’ve seen the eye specialist and had a full blood count done - you need vitamins and minerals etc done as well - you will have more of an idea what is going on. Have a read through the Thyroid U.K. website and read up as much as you can about your condition thyroiduk.org/
I had Graves’ disease back in 2011 I’m in remission now. My block and replace treatment with carbimazole - I have asthma so couldn’t take beta blockers - it meant just sitting it out until the carbimazole kicked it. My treatment took exactly a year and in all that time I never ever had my T3 tested only TSH and T4. In the end I paid and used Medichecks home finger prick tests to find out what was what. I get their Advanced Thyroid Function Blood Test which tests vitamins and minerals etc. it’s not cheap but it saved messing around begging my doctors to test things that they didn’t want to test.
I know exactly where you are coming from when you say you are at your wits end etc. before I was finally diagnosed I felt as if I must be mentally ill, I was really short tempered, I was always totally exhausted, I used to head for bed straight after we ate in the early evening, I felt absolutely awful - I was older then I must have been about 64 which I gather was quite old for Graves’ disease. The on.y good thing was that my kids had grown up and left home. I worked as an exam invigilator part time on a supply basis and I had to stop work because I was so exhausted and I felt so unreliable. I kept going to the gym - turned everything down to the absolute minimum and kept up my Pilates but my teacher is a physiotherapist and she modified everything for me too - I just didn’t want Graves to rob me of everything I enjoyed doing.
My first post on here was to ask if I would ever be normal again and I was but it was no fun back then but to be trying ti keep going with a job and three children,no wonder you feel awful.
Get that sick note as soon as you can you really, really need it and once you’ve got the children off to school or wherever - go back to bed and rest. You might not look it but you are really ill - I lost so much weight that I looked really good - but inside I was just falling apart.
I’m sure others who have more recent experience of an overactive thyroid will come along with more advice but in the meantime try to rest and be kind to yourself. (((( Big hugs)))) because you need them.
You’ve been through such a lot; go easy on yourself and be encouraged that optimal medication & time off work will allow your body to heal.
I’m so glad that your practitioner is sending you for an eye test to determine if you have any signs of Thyroid Eye Disease. What are your current eye symptoms? For me, light sensitivity, grittiness, dry eye, swelling & protrusion were all issues, but I want to reassure you that with proper treatment such symptoms massively improve.
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. It’s definitely worth starting, even if TED is just suspected. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed. Preservative free lubricating eye drops are important if your eyes are dry at all, such as HycoSan or Hyloforte.
Amazon sell selenium supplements and the eye drops. Alternatively Boots sell both and Specsaver sell the drops (although cheaper on Amazon). I’m lucky now as get the eye drops on prescription.
For eye pain, my TED ophthalmologist said take ibuprofen (with meals to avoid irritation to stomach). My eyes are always light sensitive, some days worse than others. On bad days I need to wear sunglasses even indoors. I wear reactive lenses at other times and green over glasses for night driving as these reduce glare from headlights.
You are clearly very unwell and of course should not be working as suggested before.
You need as little stress as possible and need to try and rest up and listen to your body and finds ways to relax.
Something has triggered your immune system to attack your body, rather than defend it, and the attack is focused on your thyroid and thyroid is a major gland and the controller of all your bodily functions so the symptoms experienced can be diverse and alarming.
The thyroid is the controller of your whole mind and body including your physical, mental, emotional, psychological, and spiritual well being, your inner central heating system and our metabolism.
Can you get some help at home and with looking after the children ?
I can't say much more than what I've written previously to you :
I didn't know your eyes were involved - please ensure all eye drops, lotions, potions, sprays and the overnight gunkie grease preparation are all Preservative Free - even those that are prescribed.
Please try and rest up - you are exhausted both mentally and physically and need to stop, rest and have some time to yourself :
I write this knowing that times are hard, and your job very important to you, but something needs to be done to break this cycle you find yourself in, and a sick note the logical first step to allow you some down time for you to rest and calm down the turmoil within your body.
I have stopped working now through force mainly I don’t feel any happier for it. My partner has really started to help and my kids to be fair. Thank you for your comments xxx
No worries - take good care of yourself, it's not forever, but just now you need this space and time for your brain and body to turn off and readjust :
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