I have never ever posted to a forum so this is new to me, I have often looked upon this site for advice and to read other peoples stories with great interest. I just wanted to post my story to see if anyone can relate or maybe give advice as I don't really know what to do at the moment!
I went to the doctors around 18 months ago as I was experiencing low energy, tiredness, sensitivity to the cold and never found it easy to lose weight. I was sent for full bloods and when I went back for the results they said I had Thyroid Antibodies and my thyroid had little function so I was hypothyroid, he started me off on Levothyroxine (can't remember what dose) and I was told to return in 6 weeks for repeat bloods, in these next bloods he said that my results showed that I had Pernicious Anaemia and that this and the Hypothyroid were due to an Auto immune disorder. I was told to start on the B12 injections, he said the Levothyroxine and b12 injection treatment would be lifelong but I should start to feel better quite quickly and I was to have my bloods done every 6 weeks. Over the next 12 months my Levothyroxine was put up gradually to 175mg which I still continue to take plus the 3 monthly B12 injections. At first I started to feel a little better and noticed a difference after I had my B12 shots but after a couple of months I started to feel unwell again and even worse than I did when I originally went to the doctors!
I'm lucky as my GP is lovely and has been my GP for years, he is very understanding. I went back to him with my symptoms and I had more bloods and a test for Ceoliacs. My bloods were fine with my thyroid levels normal and the Ceoliacs test was negative. As my symptoms were still continuing he said he was going to refer me to an Endo. My symptoms at this point were excessive sweating during day and the night to the point where my clothes felt damp when I was out and about and the sheets and pyjamas were wet when I woke up, this seemed to go along with an intolerance of heat. I was tired easily and any activity that was slightly physical exhausted me even though I used to be just fine doing it a few months before. I have some serious brain fog going on! My memory is not what it was, I am 26 and feel like this should not be happening! I write notes to remember and then forget where I put the notes! Also I feel like I'm clumsier than usual banging into things more often and I often have shaky/trembling hands.
I waited for my endo appointment and saw the registrar for the consultant who was lovely and I felt like he really listened to what I was saying. I told him about my symptoms and he asked about medication I was currently on. Aside from the Levothyroxine and B12 I was on Sertraline and the contraceptive pill Microgynon. The Sertraline I had been on for about a year before I experienced any thyroid symptoms and went on it as I really struggled with anxiety that in turn got me quite down. After hard work and a bit of a battle i was feeling better about things and felt like I had beaten some of the anxiety. Unfortunately shortly after this my lovely dad passed away suddenly and it obviously had an effect. The anxiety was still at bay but the doctor said it probably wasn't a good time to look at coming off it. The endo questioned me about the sertraline and symptoms and to be honest I felt like he was getting at the 'is it all in your head' kind of thing which naturally I am defensive about as I honestly don't believe it to be. I explained about my father and the fact that what I am feeling now is worse than when I was diagnosed as hypo and it was taking over my everyday life so naturally it was getting me down. He did listen to my other symptoms and did a quick physical examination and sent me for full bloods, a short synathcen test, a chest x ray and ultrasound scan and 3 24 hour urine collections. He said he would see me in 3 months for the results, I asked for a copy of the letters sent to the GP. These are the results I received which to me don't have all the figures I need to make sense but I'll tell you what I have been told.
The first letter I received shortly after my consultation said the following (this was before all my tests had been done) Recent investigations 11.06.14
Thyroid receptor antibody 1735
EGFR > 90
Anti TTG was normal
The letter also said for me to test my blood sugar regularly and I did suspect that sometimes my symptoms were related to low blood sugar especially as they would ease a little after eating but when I felt like this and tested, the lowest result I ever got was 3.9 ruling out Hypoglycemia. I'm about 3.5 stone overweight and would love to do something about it but at the moment exercise is near impossible as I'm in such a mess after little activity. He said I had a mild tremor and a heart rate of 100 . He said that I had no sign of a goitre and that there were a few striae on my abdomen. The letter basically ended with if the results come back clear I might be looking at a diagnosis of Hyperhidrosis.
So.... I had the tests I was sent for and got the following results - Lipid profile from the 11.06.14
Tryglyceride 2 mmol
HDL cholesterol 1.6
IDI cholesterol 3.5
This letter also stated that as my cholesterol was 'high' (I couldn't understand the rise from the first set of results!) I should be assessed for my risk of my cardiovascular disease and considered for treatment with Statins?! This to me was crazy as my cholesterol wasn't massively over, it can be higher when you are hypothyroid plus I cannot exercise as I used to be able to due to all the symptoms!! I asked my doctor about this and he said there was no way he was going to consider statin treatment and I wouldn' t have agreed to take them anyway. I don't want just another tablet!
The letter with my other results came mid August and said the following
Ultrasound of abdomen and pelvis was normal as were the kidneys, spleen, gallbladder, pancreas and liver with no free fluids in pelvic cavity and no significant abnormalities seen.
Short Synthacen test showed a normal response with a baseline of 642 and an incremental increase of more than 200.
Chest X ray all clear and urinary 5HIAA showed normal levels and the 24 hour urine levels of metadrenaline and normetadrenaline levels were normal.
Antibodies to adrenal cortex were negative
Renal function normal urea and electrolytes with a sodium of 137, potassium of 4, creatinine of 65 and urea of 2.8. FSH and LH were normal.
Oestradiol was normal and eGFR was >90
The letter was concluded by saying the results point against adrenal insufficiency and I would be seen in clinic as planned.
Well... yesterday was my appointment which felt like I'd waited forever for. I was seen this time by the consultant, while he was pleasant enough I honestly felt like I wasn't been listened to properly. As far as he was concerned my results were normal and I am 'just tired' through the whole appointment all I heard was 'I know you're tired sweetheart' I may just have been in a bad mood but I just felt patronised! I explained my symptoms were continuing and impacting my everyday life. I run a business and care for my disabled sister so It's important for me to keep going!
He also said one day you may find that you become under active and are diagnosed with hypothyroidism????? I asked him to repeat it which he did and I then went on to explain that I already have 18 months ago, the information was all there and he didn't even know. Doesn't fill me with confidence! He also seemed to write of the Pernicious Anaemia like it wasn't significant. Anyway after all this I was in floods of tears as I just couldn't keep it in - felt like an idiot! I basically said I wish I had never gone to the doctors in the first place as I feel worse now than I did before I was diagnosed. He is repeating some bloods and including some new ones (I think I'm having 9am cortisol level test, after taking something tonight, androgen profile, vit D and zinc levels plus more antibody tests, there are others but I can't read the writing!) - he said he is testing me for everything from an endocrine perspective (which it felt more like it was to shut me up) and if those results are clear I will be discharged and sent for care at a Chronic Fatigue Clinic, I don't believe it is that with all the symptoms I'm having I think there is something else going on. You really don't appreciate your healthy life until it's taken away from you.
So I don't know what I want from writing this I'm just at my wits end and could maybe use some positive outlooks, advice or similar experiences - also if anyone is starting out on investigations feel free to ask me anything, I don't know much but I'm happy to help if I can.
If you have read this thank you SO much as its more like novel than a post!