I am an official lurker but wonder if I might not be a proper member soon. My story:
I have been diagnosed with Hypothyroid for 10 years. I have never been very well controlled on Levothyroxine and have had very little support from my GP. I have had an awful 10 years- lots of anxiety - 2 Bereavements, an errant husband and demanding teenagers...not to mention a forced house move and a demanding job. So I have had alot of symptoms of anxiety which my GP has separated from my Hypo issues and tried to give me anti depressants.....I have never accepted.
I had a private blood test done - 2 years ago showing a hugely elevated TSH but GP advised she didn't accept private tests so did another herself and 'told' me it was OK - I didn't see the figures. So, I stayed on unaltered Levo and felt no better. Lots of temperature fluctuations, panic attacks, hair loss etc, so I started to use Iron supplements and Vit C in high doses. In December 2015 I developed a very bad cold and then sore throat, so went to GP. Was prescribed Antibiotics but also told to get a blood test done to check Thyroid.
I did this privately as I had lost faith entirely in the NHS testing.
This test showed very 'deranged LFT' all of them, AST, ALT, GGT and ALP and a high Ferritin, high Cholesterol and high TSH- still. I went to the GP and he dismissed it as being invalid as I was on AB's and had a very bad virus (unsure why he asked for blood test then)
I immediately stopped the iron supplements, stopped the Vit C and upped my Levothyroxine. I also stopped any alcohol ( prior to this I would have a small glass of white wine perhaps 3 times a week and have never drunk more than that anyway)
In May, so 5 months later, I had a repeat test done and discussed results with a private GP. TSH was for the first time ever in the correct range but the Free T4 was slightly over, so Dr told me to reduce the Levo a little- which I have done.
The Ferritin was still high but had reduced by 75 points. The AST and ALT were right down to minimal readings and not at all raised. The ALP was just slightly above the high normal as was the GGT. My Cholesterol was still high.
I was dissapointed and discussed with the Doctor who told me in his view, I had had an acute flare up in January with a nasty Virus and AB treatment which had distorted my LFTs and now 5 months later they were returning to normal. He said the Ferritin can take a while to reduce back and being a post menopausal woman my ferritin might 'normally' be at the high end anyway. (this is true as the blood test of 2 years ago with no other abnormality showed it was 148 and the high normal is 150)
He advised the ALP and GGT were only very slightly above the upper range of normal and to test again in 6 months. In respect of cholesterol, he advised that once the Thyroid has been stable for longer, this too would decrease.
SO.......Now I have been reading about PBC.
I have Hypothyroid issues. I also used to have - Psoriasis - although not for 15 years now and that was an acute reaction to penicillin to which I am allergic to. So I am an autoimmune type of girl
My worry now and believe me it is ALL consuming, is that I have some advanced form of liver disease and am also about to have a stroke or cardiac event due to my cholesterol....I am SO anxious and am analysing everything since reading about PBC.
I am not fatigued...In fact I cant sleep as I am so wired.
I don't itch - although when I think about it for too long, I can actually make myself itchy
I am not jaundiced and feel well apart from this endless anxiety and I do get panic attacks. Occasionally I feel dizzy when I am in crowds of people. Bladder and bowel function all good although anxiety might increase the bowel function on occasions. I have no abdo pain. I DO have some lower back pain and stiff hips at times but I put this down to years of riding, and any stiffness passes once I get moving.
I gave up smoking years ago , I eat very well, very little fats or red meat, loads of fish, fruit and veg and haven't touched alcohol since January. I eat no sugar, no junk and no carbs apart from gluten free porridge - hoping to lower Cholesterol. I take no meds aside from Levothyroxine and I have started to take Turmeric and Milk Thistle in the hope it will help reduce the inflammation that the Ferritin elevation is indicative of. I drink alot of water and walk for 3 miles + daily.
My only 'symptom' is tinnitus- constant over the past 7-8 years and an insanely itchy ear - otitis media - and also serious anxiety.....all attributable to Thyroid issues. The cholesterol also is associated with unmanaged Thyroid.
I guess my concerns are centred on the residual elevated GGT and ALP - albeit only mildly raised. The Doctor I saw in May told me that he was 'pleased' with how my blood count had reduced....and told me he felt the slightly residually raised GGT and ALP were not significant. He did ask me about bone pain and I told him about my stiffness, and he did say the ALP can indicate bone issues.....he also noted my increased free T4 that could be putting me into HyPER thyroid territory and again remarked the ALP may be reflecting this.....I guess also that as he could see me, he could see that I look well and am reasonably 'fit'.
However, I am now - and this is where Im ashamed to say - completely paralysed with fear at taking the leap towards getting repeat bloods done - due in October - for fear the ALP and GGT hasn't reduced back to normal (they are about 8-10 over the high end of normal so not in the 100s+.
I am leaping to conclusions...but feel sure I might be a PBC case The more I read, the more I worry and the more I worry, the worse my itchy ear gets and I begin to 'feel' fatigued NOW I wonder if I have had PBC all along and am now in a state of advanced disease- I have read some people are completely asymptomatic...but then find they need a new liver or worse
Does anyone have any advice for me. Im sorry I sound so very neurotic and I so seriously wish I had never had the private bloods done and had just stuck with the GP's thyroid measurements only.....to me, back then, ignorance was bliss, I am ashamed to say.