Hi, I joined a little while ago but haven’t posted yet.
I hope it’s okay that my post is quite long? I have a question at the end but thought I’d write some history first.
I was officially diagnosed in March 2016 after five noticeable months of feeling absolutely dreadful. The first thing I noticed was dizziness/vertigo which started in November 2015. As time went on I had all manner of symptoms, I was back and forth at the GPs getting various blood tests and when I was too unwell my GP came to mine. My GP thought I had Glandular Fever even though the test for that came back negative. She pretty much gave up on me after promising to phone me once a week to see how I was and not doing so. It made me feel like some sort of hypochondriac.
Anyway, after much googling on my part I came across the Thyroid UK website and saw the list of symptoms, I think I pretty much had about 90% of them at that time. When I saw the “burning foot syndrome”, “loss of eyebrow hair” and “scalloped tongue” that pretty much clinched it for me. I managed to get an emergency appointment with a different GP at my surgery because I wanted to ask if with all the tests I’d had, had a thyroid test been amongst them. Unbelievably it was a “No”, so I said I’d like a test for that as I was pretty certain I was hypothyroid. That GP thought it was Fibromyalgia (which incidentally my rheumatologist had already diagnosed me with two months previously. I see a rheumy as I have Psoriatic Arthritis (diagnosed 15 years ago). They arranged for me to come back the next day (a Friday) for the test and on the following Monday I had a text to say “your results are back, make an appointment with your GP in the next two weeks”.
On the Wednesday I got another text simply saying “Myxedema, come in to the surgery today for a prescription” (50mcg Levo). My own GP then phoned me on the Thursday apologising profusely that she’d missed it and that she had spoken to an endocrinologist at my local hospital and that I needed to come back in to up the Levo to 75mcg and to book in and see her, to test whether it was auto-immune. I did, and it was Hashimoto’s. I’m not sure at what level but she did tell me my T4 was practically zero and my TSH was 150.
Anyway over the past 18 months I’ve been seeing an endo at Addenbrooke’s, Cambridge (different one every time) my last appointment was in July of this year, I’m due to go back in November.
My latest results are (July 2017):
TSH 0.35-5.50 mU/L 1.48
Free T4 10.0-19.8 pmol/L 20.6 (H)
I asked him why there was no T3 result and he said they hadn’t tested it that time but would in November.
So prior to that my results from February were:
TSH 0.35-5.50 mU/L 9.16
Free T4 10.0-19.8 pmol/L 21.0 (H)
Free T3 3.5-6.5 pmol/L 3.5
Also in July I had a B12 test done:
Serum vitamin B12 level 327 ng/L [211 - 911]
And a Vitamin D test:
Serum total 25-hydroxy vitamin D level 77.9 nmol/L
Although over the past 18 months I’ve generally improved from when I was at my worst. And although my results are the best they’ve been, I am feeling absolutely dreadful (I have definitely felt better at other times during this). I really feel like I’ve gone downhill again and I can barely get out of bed at the moment, I’m so fatigued all day and for the first time starting to feel a bit of depression creeping in, my brain feels like a complete fuzz ball. I also ache all over and and my joints are a lot more painful with numbness and tingling in my hands, though I think this is more to do with my arthritis. (I was diagnosed with clinical depression at the age of 13, I am 49 now but can honestly say since the age of 33 I haven’t really suffered with it to that degree since.)
I just don’t know what else to do now, and I was hoping that although my results are from a couple of months ago and acceptable to the endo if there is any clue there? I know there are some very knowledge people on here. I am now on a daily dose of 150mcg levothyroxine which I take in the morning. (Plus a multitude of other drugs because of my Asthma, weak bladder, Psoriatic Arthritis and Hypercholesterolaemia which I take at night.) I also take Vitamin D at night, 800IU.
Is there anything that I should be asking my endo next visit?
Thank you very much for taking the time to read this and I’m sorry it’s so long.
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