Hypothyroid but possible PBC symptoms :(

[luley]

Hello everyone.

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.

[Hidden]

Hello luley.

I know from experience that the NHS don't do random tests unless there is suspicions of something or the standard over 40s health checks that include a finger prick blood check first.

Certain medications that we take can alter blood tests and I think if I am right hypothyroid issues would give cause to have blood checks from time to time. Not sure what is checked for your condition currently.

Abnormal liver function test (or LFTs for short) can show up like this too if there is any bone health issues. There are also other liver disorders that would give outside normal LFT readings.

Until I started to itch intensely early 2010 I had not heard of PBC. I stumbled across that myself as time went by and other blood checks after it was determined my LFTs were over normal range and slowly climbing each check plus GP determined via blood test that it was in fact liver-related as opposed to bone-related. I saw PBC in a library reference book and then had a look online. An overload of copper for eg can give abnormal LFTs and this condition is Wilson's Disease. I had a check for that as well as various others from hepatitis and even AIDs in the start of blood checks.

I am certain if you did have some liver issue then your doctor would have spotted some abnormality in the blood checks and investigated. Your LFTs could have been temporary as they can be. It has to also be noted that certain herbal remedies and supplements can throw blood tests out. Personally I'd not take any unless you know what exactly you are taking something for and also whether it could clash with anything else. Coffee is said to be good for liver inflammation and in my opinion if you only think you have something then it to me would be the safest thing to take as opposed to herbal remedies.

I did get diagnosed with PBC December 2010. I am still doing quite OK. My motto is to live life now and enjoy it as we never know what is round the corner. Ask your doctor questions when you go with your other health issues and ask for an explanation of any blood tests you might have. Believe me you will ease your anxiety. Also to note, if you did have the itch associated with PBC or

another liver issue then you would certainly know it

as the itch in PBC is a distinct one that might be a bit hard to explain to someone who hasn't got diagnosed PBC but one that isn't easy to forget. I've itched now for not far off 7yrs. Could your itchy ears be anything to do with allergy to metal? I have a nickel allergy and it has only been in the last decade I've been able to wear fashion earrings.

Eat heathily and try to enjoy living life now. Also with PBC it is to me needless worrying about something that might never happen as with PBC it can be a rather complex thing to have as it appears that everyone progresses differently and the majority eventually die of something totally unrelated despite having PBC.

[luley in reply to Hidden]

Thank you Peridot. Yes, having hypothyroid means I should get TSH and T3/T4 levels done annually...but the results are sent directly to the GP and little chance to discuss. I cant think my GP has ever changed my dose beyond 10+/- and I have always felt less than well but the GP told me it was my 'depression' and stress causing the symptoms. My ear, well it is acutely itchy inside it, in the ear canal not the lobe as such. I have occasionally mentioned this, together with the tinnitus, to the GP but little interest shown...I do drink a fair bit of coffee and am hoping I haven't done any damage as such with milk thistle and turmeric. I just don't know where the inflammation can be coming from? But the Ferritin elevation is a worry on its own and apparently it is no where near high enough to be Haemachromotosis.....and inflammation doesn't arise from nothing, does it? As I said I am sorry to be a neurotic and thanks for your interest...being anxious is so tiring and I know it doesn't help anything. Wishing you well.....

[Rockie]

Luely. I also have problems with thyroid. For years I was told it to be under active (I am actually thin, weigh 57kgs.) Am on Eltroxin and lately tests show I am hyper thyroid. Now I take smaller dose of Eltroxin. Outo Immune I am, PBC, the dry eyes, mouth and the awful ITCH . Luckily I do not suffer from fatique or cholestrol problems. I am 75years. Was diagnosed in 2009 with PBC. The thyroid problems I have had for many years. I am at a stage where I do go as little as possible for tests, about twice a year, Do not want to know what else the immune system has attacked. I feel for young people with this unknown disease. I say unknown as many GP's do not have knowledge of PBC. My sympathy, but we just have to go on and make the best of the situation, not easy

[luley in reply to Rockie]

Thank you Rockie, you are right, it is all very difficult and in my experience, GPs do tend to dismiss Thyroid problems - and they are indeed very common. Sometimes. as I said in my post, ignorance can be better, if not Bliss! Go well.

[GrittyReads]

Hi Luley,

First of all, I would consider seeing another GP* - either another one in the same practice if there are others - maybe find out from neighbours etc. who is most highly regarded. There is no requirement for you to see the one you are registered with. Or you could move practice - again, check out what patients in other areas think.

Also, it is absolutely your 'right' under the NHS to have copies of any results, letters, etc*. I usually just ask my GP's receptionist once the results of my annual liver function tests are back. There may be a small charge for this - mine don't bother if they are recent results. However, there could be a sizeable charge if you want to go back to a lot of much older tests, but it may be worth having them. I just don't know what your GP thinks she is doing in not going over things, properly, with you.

There is a 'Thyroid UK' site elsewhere here on 'Health Unlocked' and you might also want to check out that site, and ask some of their members about how they go about getting decent treatment. I think their advisors are very good at responding, too, so you may get some more informed help. Also, why not talk to the trained advisors on here at the 'PBC Foundation'? The 'PBC F' hosts this site on 'Health Unlocked' and there is a link to their website at the top of the page; once there you will find contact details to talk to their advisors as well as lots of up-to-date info on PBC. If you join - it's free - you get even more info and advice on diet, exercise etc ... While it is quite likely that you don't have PBC, they will be able to put your mind at rest concerning your questions.

As for PBC, if by any remote chance you do have it, then on the whole, the condition is not the awful illness it used to be. Medication can do a lot to improve things, and also there are new treatments in the pipeline. With regard to your raised ALP and GGT, while they are two of the important markers of PBC, they can fluctuate for many other reasons ... and I believe that stress can play its part there. Also, your blood tests for PBC should have included a test for the antibody AMA (antimitochondrial antibodies ) as most people with PBC also have this antibody. It is possible to have PBC without AMAs, but this only occurs in about 5% of cases, but if ALP and GGT continue to rise, you should be checked for AMAs. Many of the symptoms you mention, such as jaundice, bone pains etc don't tend to occur until PBC is more established, while fatigue may, in your case, be being caused by the incredible stress you are feeling.

So, I also want to suggest that you concentrate on doing things to make yourself feel happy - and I know that is easier said than done! But give it a go ... Spoil and coddle yourself, and meanwhile see if there is anything you can do to cut down on external stress, eg from family and work. If there is anything that you love to do that makes you feel better, happier, calmer, then do it: dancing, swimming, yoga, nights out with the girls: even relaxation classes or massage. In addition, try to make some positive steps on the 'health front' as indicated above*. I know that for me, my stress decreases (I am a terrible, terrible worrier) if I am both treating myself to something I love - whether it is yoga, climbing wall, a good film, or a bout of mad creativity (I design/sew as a hobby) - and if I am making moves in tackling some of my demons at the same time. It sounds to me like you are overdue some tlc ... and that you need some positive and self-boosting steps forward, in getting some changes and answers on the worries-front, so maybe see about getting a new NHS GP, and getting hold of your results.

Sorry this is so long, I hope some of it helps.

Take care xx

[luley in reply to GrittyReads]

Gritty reads . I am so grateful for your reply and clear kindness and understanding - I have read it several times and feel a little better . I'm just in such a cycle of anxiety it is hard to break but break it I must. I just want to feel well or at least better and I realise how much I have taken for granted in the past - good health is a privilege and not a given....thank you so much for your balanced and kind reply which is very much appreciated. Luley x

[Rockie]

Luley. Was just browsing through old posts and came across yours. How is the thyroid doing. Mine is giving problems in so much that I was hospitalised . Had irregular heart beat, highblood pressure, and then after some time the irregular heart beat stops, Saw a Cardiologist yesterday and he suggested that I see a Rheumatologist. I never struggled with fatigue until lately but that is apparently due toe the Autoimmune Thyroid. Now the Cardiologist reckons my thyroid is attacking my heart. Anyone else here with same problem? The itch also stays a problem that I suppose will be with me for ever. My liver counts are looking better than ever, Am on Ursofalk