Hi all *waves shyly*. Sorry this got rather long 😮
Have recently realised due to worsening symptoms that I clearly have a thyroid problem. I'll spare you the litany of classic hypothyroid symptoms and paraphrase to "most of them". The ones that are concerning me though are the ataxia like symptoms. Frequent bouts of pins and needles, numbness of arms, brain fog, poor balance, poor and worsening hand co-ordination... these are scaring me and getting worse.
After 3 days of attempts I finally got a doctor on the phone and told him the above and that I also had a kidney infection. He checked what I meant by ataxia, asked what I did for a living, and said the receptionist would call back with an appointment to have my blood drawn. Then he ended the call.
Part of me thought great, he's taking me seriously and at least I didn't have to jump through the face to face loop of having to explain how I'm still slim (have to restrict to one, small-med meal a day with no snacks, otherwise I gain weight).
The other part thought wait... no family history? No symptom questions? It's all extremely relevant, and is he just not worried about the kidney infection? Will he schedule a face to face after the blood test?
Anyway, I went along and got tested, was pleased to see he'd added quite a few vit deficiency tests to the list incl B-12 (once I asked the nurse with the needle what they were actually testing) and figured okay, I've probably got a decent doc.
Rang up for my results yesterday and was told all "normal" except the thyroid function which tested Borderline:
Receptionist relayed the doctor's message at the bottom of the page which just said for me to book a repeat thyroid test in three months. Nothing else.
I was so thrown I just said thankyou and let her end the call. I'd prepared myself for them only testing TSH and T4 and had braced myself for a borderline/subclinical result but really? He had a patient presenting with ataxia (which from what I've read, requires immediate investigation) and wasn't even going to have a face to face? Just... ring up in three months.
So yep, this is where I'm at. What I want is to get an actual face to face with a doc who'll take down my symptoms, family medical history (boatloads of autoimmune disorders including MS on one side and hypo on both for a start), physically look at me, and give me a thyroid antibody test but I honest to God have no idea how to achieve this.
My surgery runs on the system many of you will be familiar with, where you call first thing in the morning to get an on the day appointment, which are all booked up within 25 mins on hold so it's a lottery. Every time I ring I manage to get cut off at least 5 times and have to rejoin at the back of the queue, and they won't let you do it in person. That's not even getting into the part where you have to convince the receptionist that it's urgent, then finally a doctor calls you back to assess you on the phone.
The only approach I can think of is to call, distraught and say I can't wait 3 months with my ataxia getting worse and not knowing why, when my grandmother died very young from MS.
Really tempted to get a private thyroid panel done including antibodies so I have something to wave but is there even any point?
Sorry, this really did get long. Needed to get it out though as NO-ONE wants to listen. Even my mum responed sniffily and 2 days late, saying it was "only subclinical" and not to get worked up until I explained the ataxia stuff.
Really frustrating, especially as I'm the opposite of a hypochondriac; to the point where they've all lectured me multiple times in the past for NOT seeking medical attention. Grrrr.
Thank you so much for reading all the way through this long, slightly panicky, introductory rant 😁. I'm looking forward to getting to know you all.