Graves’ disease the mystery continues …

[nooneimportant]

I’m not normal 😕 on any level this is weird ok I believe I’m hyper again following cessation of meds as reported before and can’t get blood test repeated until 17th April which annoying.

Potentially mild symptoms of being hyper - I’m convinced it’s high but anyway … consultant and GP wanted me on bp meds whilst I was taking Carbimazole as my bp had gone up massively - I took it this morning about 20 minutes after my usual morning walk and it’s come down from 130s-140s/80s to low 120s/low 70s …. Why???

im totally confuddled I swear my symptoms are always opposite to what I’m meant to be 😤😤😤😤😤

still waiting for the tripling hunger to return and … nada! I’m eating less than I’ve done in years yet I’m sure my thyroid is up (it doesn’t show on outside mine I think tends to swell inwards) …. So frustrating I can’t get tested but the wait continues I’m tempted to take a low dose and see if symptoms go away🤔

[Jazzw]

I thought you’d forbidden yourself from taking your blood pressure? 🙂

Honestly, I would wait until you have the new blood tests done. Your TSH was still in range, albeit at the bottom. You’ve said yourself that the symptoms could be something else - and from what you’re saying now, nothing’s matching up to your previous experience of going hyper.

I can only imagine how anxious it’s making you feel but try to stay in the moment rather than what might happen next, ok? Any thought that begins “what if…?” isn’t real and usually it does us no good to focus on what might happen—none of us know the future.

[nooneimportant in reply to Jazzw]

I had but I was just too tempted so dug it out and did it anyway - just had to know … yes I guess I’m just going to have to be patient 😖 I’m not good at that

[asiatic]

It's normal for Blood Pressure to fluctuate. The readings you quote are perfect. Don't make any changes until your next blood test. Hang on in there and enjoy this lovely weather.

[nooneimportant in reply to asiatic]

thank you - I’ll try 😖🥰

[Woodsman4]

that BP reading is nothing to worry about. As previously stated BP can fluctuate. Also electronic BP devices are not the best for accurate readings. Also your state of anxiousness can cause slight tick up in readings.

It's also not uncommon for some, myself included to experience anxiety at the very early phases of being suboptimal, still in range,but trending hypo. If FT3 is in the lower 50% of its range I will notice I experience a little anxiety. I also will have slightly less energy, harder to get out of bed and stiff body, occasionally a mild feeling of being choked in my throat and some aches while getting my morning started. Don't overthink it. Wait for the labs. Listen to your body.

Honestly, from the sounds of your case if I was guessing you are experiencing mild hypo symptoms from being low in the range in fT3. Even if TSH is low and FT4 is 75% through the range FT3 can still be less than adequate for your bodies needs to feel good and function correctly. Reverse T3 is sometimes to blame for its role in blocking receptor sites too so try to reduce stress, get outside and take in some sun and nature if possible.

Lastly it's not uncommon for TPO antibodies to be present and remain elevated at this stage they are often present in graves but also cause autoimmune thyroiditis. When TRab antibodies (causes hyper/graves) are reducing in later stages (18-24 months) and TPO are still present and elevated, swings of hypo symptoms can occur. Try to reduce stress as much as possible. Easier said than done.

Be Blessed

[nooneimportant in reply to Woodsman4]

Thank you - I’m not too worried about my bp as it’s actually come down since I stopped my meds but seems strange that meds would push it up that much 🤷‍♀️ however my last TSH reading had dropped since cessation of medication and they’ve lost my t4 result which is what I’m more concerned about 😕 I feel congested with mild pain shooting down from my ears and my throat feels full but I’m not choking on food like I was when hyper, but yet feels like something is closing around my thyroid. I can’t see any tremors and apart from water weight which I had a lot of on the meds I’ve not lost any weight or experienced excessive hunger which I did before when hyper. my eyes (left eye mainly) although clear apparently of TED actually feel better since stopping meds and so do my joints and teeth and hair isn’t falling out so much but all could be just a lack of side effects of medication … I just think as that TSH has dropped I’ve gone high again … in fact I’m 99% sure it has 😞

I go for walks in nature where I live daily which really helps me 😊 like you I’m a big advocate of walking xx but have to avoid the sun as I’m allergic 😖 (polymorphic light eruption) because life clearly hates me 🤣🤣🤣 although I do try to get five minute exposure when it’s out before I erupt🫠

I’ll see if I can get a proper full thyroid check up privately after this next lot and check T3 😊

[nooneimportant]

After struggling with the throat pain now for a while this morning I decided to take a quarter of my 5mg Carbimazole - really struggled with wearing my bike jacket on make last few rides (biker collars sit nicely over the thyroid) I’m gutted due to the side effects of these meds but equally taking pain relief daily isn’t an option either 😞

Although appetite hasn’t increased - probably gone down - no weight loss or tremors that I can see and I’m checking a lot and blood pressure actually went down the pain coming from thyroid, congestion and fatigue must mean something is way off.

[tattybogle in reply to nooneimportant]

honestly , think you need a 'patience injection' nooneimp, taking carbimazole now will confuse the results of your upcoming blood tests . your symptoms could be due to hypo or hyper. you need to test TSH / fT4 / ft3 after not taking any carbimazole for a few weeks then you can see what is actually happening rather than confusing the picture by acting on assumptions . I really miss my biker days , (it turned into a van somewhere along the way and i learned bad habits like stomping on the brakes half way round a corner lol )

[nooneimportant in reply to tattybogle]

I know but I felt so ill plus since taking some I feel a little better already although I imagine it’s a placebo effect- but throat isn’t hurting now so 🤷‍♀️ I’ve always reacted super fast to this stuff I might just need a mega low dose but definitely felt like I was high

I love my bike … not sure I would know what to do without it but I get you, it’s so easy to get out of practice too 🥰

[tattybogle in reply to nooneimportant]

i thought i would really struggle without a bike or a van ... freedom , headspace , travel/running away , you know

,,, but surprisingly , i really love the 'other' freedom of not having a motor vehicle at all .... just a pushbike. i needed to mend it last week ..... £3.50 .

(and a train ticket if i want to go further than about 4 miles, lol )

i do miss the sound of a lazy old twin cylinder opening up tho .....

[nooneimportant in reply to tattybogle]

I hear ya - it’s certainly not a cheap hobby - although having a car and bike is helpful where I live as we don’t have much in the way of public transport here although I miss push biking to work - I guess I could do it around the garden before I log on though 🤣