Hi everyone!
I hope it's ok to post this kind of thing here but I wondered if my story registers as something that could be related to a thyroid condition. This will be a long one!
I am a 22 year old woman who has suffered increasingly ill health over the last few years. A few years ago I had very strange almost hypoglycemic/low blood pressure periods where I would suddenly get very hot then lose my vision to dark and fall depsite remaining conscious. Back in 2017 I started losing my periods and was discovered to have PCOS. I was also discovered to have low white cells and neutrophils and referred to hematology. It was also discovered at this time I had severe iron deficiency anemia - my ferritin was 3ug/L! and a b12 level under normal. I was treated for the iron but not the b12 and got progressively worse after with my iron only rising to 24ug/L after 3 months of super high dose supplement. Fast forward to this year after suffering increasingly with worsening fatigue, a doctor baffling bout of oral thrush and worsening digestive issues it got to the point where in may I looked and felt like a zombie - I was laying on the sofa all day unable to perform basic tasks and with a range of symptoms including: extreme fatigue, inability to exercise due to breathlessness and dizziness when trying, heart racing and breathlessness climbing one set of stairs, forgetting names of objects/things, tinnitus, yellowed skin, lightheadedness and unsteadiness in darkened conditions, restless legs, vision disturbances - blurred vision and difficulty focusing, pins and needles, tingling lips and constant tingling in my feet, weakness/loss of hand control when typing/writing, scalloped reddened slightly enlarged tongue, ridged nails, cold hands and feet causing chillblanes in winter, complete loss of periods and severe digestive problems: constipation, soft/undigested food stools, silent reflux causing post nasal drip, burping, farting, severe bloating and suspected low stomach acid - didn't burp at all doing baking soda test and didn't respond to diet changes (far better digestion eating acidic foods) and inability to eat normal sized meals and in particular protein without extreme fullness. I have also as mentioned suffered with extreme cold for years - my hands and feet are always ICE and all summer I have been sleeping with two duvets on. I am freezing cold constantly to the point in winter it's hard to function. I was trialed on b12 injections after a fight to get them for suspected pernicious anemia and they have improved my life dramatically - many of the above symptoms improved or vanished and fatigue is way better though still definitely not normal. I have to self inject once a week as the awful fatigue creeps back if I don't. I also have ongoing low ferritin of 17 (so 2 above minimum and with no blood loss from no periods) and vitamin d deficiency it was 38nmol/L. I am also struggling to eat - I heavily suspect low stomach acid as I can't digest protein well and have to eat small portions and am being tested for SIBO - any attempt to eat more than a tiny amount of starchy carbs cause immediate severe digestive symptoms. I am currently eating about 1000 calories a day (I am 5ft 10 and have a bmr of around 1500 calories so nowehere near enough) but physically can't eat more without fullness and an overload of awful digestive symptoms but also don't feel hungry desite eating 1/2 the calories I should. I am predictably therefore underweight but strangely despite my severely malnourished diet and lack of calories I am not losing weight. My current problems are the much improved but still present fatigue - i can do daily tasks again and don't have to lay on the sofa all day but long periods on my feet or exercise is impossible, the cold extremities and body temperature - I am wrapped in two blankets as I type!, yellow tinged skin - seems to have improved with b12 but still very visible on extremities, mouth ulcers and still mildly scalloped tongue, occasional dry mouth, brittle dry hair, ridged nails, severe digestive problems listed above/silent reflux/pnd, tinnitus, ridged nails, complete loss of periods and libido, strange vision - blurriness and double vision that isn't constant. I am also still continually monitored for my fluctuating neutropenia - always below normal with my other white cells and low complement c3 - my consultant suspects I have an autoimmune disorder but according to a letter from the immunologist he contacted "no one at the hospital has an interest or knowledge in autoimmune disorders"?! so no help there.
I don't know hardly anything about thyroid and differences in hyper/hpyo or autoimmune thryoid problems. I have heard before that like with PA the tests doctors run are frequently insufficient. I have had my tsh tested a few times randomly before but every test has been a different number ranging from 1.4 to 3.1miu/L. I also found out today from my dad that my grandma had thryoid problems and was on medication and had a goiter removed? If anyone can offer any advice or thinks it sounds like something I should pursue I would be incredibly grateful! Thank you!
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