Dithering GP but I'm in perpetual panic

[luley]

I have under active thyroid that has been pretty badly medicated for 10 years. I get private bloods done and GP always disagrees - runs his own - and tells me my TSH is not as high on the NHS test so keeps me at the same Levo dose. This goes on and I tweak....last test was TSH of 29, NHS test showed 10. So I increased my Levo and then I got a better TSH and for once in range! But same tests showed ALP and GGT of about 10 more than they should be and a high Ferritin also - also high Cholesterol of 7. Now GP tells me that Cholesterol will be out of range due to Thuroid fluctuations (without admitting HE has been under medicating me) But is discounting the ALP and GGT as they are only slightly raised ...he has just told me to cut down fats, excercise more and reduce stress. I haven't drink alcohol in a year now and don't smoke.... GP thinks ferritin higher as I had been taking iron meds and probably have arthritis in hips - so he is doing nothing more apart from further routine thyroid tests.... I did have a previous liver panel which showed all of the LFTs were high but they are all low and normal now -apart from GGT and ALP and because GP thinks this 'trend ' is good he has decided the first full liver test was taken when I had a bad bacterial throat infection and on antibiotics so feels this was one off..... he also says ferritin can take a long time to revert to normal levels in a post menopausal woman with a history of vitamin C and iron overdosing .... when I mentioned PBC because of the link to thyroid and raised ALP and GGT he just didn't want to discuss and thinks the raised cholesterol and GGT will resolve when cholesterol drops back to normal. I admit I have no symptoms - no fatigue or itching and what little tiredness I did have has got better now I have altered my levothyroxine....so I just sit and wait until I do get symptoms- or am I being overly dramatic and neurotic? I admit I am over worried but have lurked long enough on the PBC group to know the connection with auto immune conditions- i also have mild Reynard probs and Psoriasis ( not active now but was bad 14 years ago) so I know I am a potential candidate for PBC apologies for sounding like I'm meeting trouble half way but I am worried

[Hidden]

Hello luley.

I was struggling to understand your posting until I looked once again. I thnk I'm right in stating that you do not have diagnosed PBC.

It has to be noted that raised LFTs can be present in patients who take certain medications and the norm is to monitor. Bone related issues can also cause the LFTs to be higher.

If you showed certain symptons of PBC then I am certain that a doctor would take it further.

It is apparently true that certain other auto-immune disorders can be connected with having PBC but it is also possible that some patients with say thyroid issues doesn't necessarily acquire PBC.

I had a slightly raised cholesterol reading prior to diagnosis in 2010 but it was apparently good cholesterol and was of no concern to GP and nor the hospital consultant when I saw him who gave me the diagnosis a couple months after my first visit to him.

I'm no doctor but if your LFTs are currently back in normal range you are getting a pretty accurate picture of these results. I think when I started on the urso December 2010 at diagnosis and my LFTs were over normal range and during 2010 they did continue to rise (though they had dropped a bit without anything (and I was not any medications during 2010 or even previously) just prior to seeing the consultant but were still higher than normal), drops in my LFTs since 2010 area attributed to the urso but I think we can receive a more false reading due to the urso.

True you can have PBC and have normal LFTs and also being what is known as asymptomatic but I know if that was me I'd not really worry about a thing. I am reminded I've PBC every day as later evening I start to itch and it is with me until 6a.m. My LFTs are not normal, might never become normal range again but I'm considered OK for one with PBC currently.

[luley in reply to Hidden]

Thanks Peridot. I am over worried at best and at other times I trawl through posts thinking 'this is me'.......Why would all my other LFTs come down, apart from GGT and ALP?? Why is the ferritin so high (350 and top of range is 150) GP has utterly discounted Haemochromotosis by the way....High ferritin can indicate many nasties and mostly inflammation (thinking liver/duct swelling)....I haven't touched an iron tab in a year and not a single alcoholic drink so why is that not going down.....? But primarily why is the GGT and ALP still up....GP hasn't done not seems willing to do other tests for hip pain and I am actually concerned regards the Cholesterol as the elevated bit of that is not the 'good' cholesterol. I am so careful what I eat and keep active and I am not overweight THEN when I stop thinking about PBC, I start worrying then that it is some other undiagnosed 'growth' usually, in my head, Pancreatic related.....Do you know just how much I had never got my own Blood Tests! Thanks for your reassuring advice though....

[Hidden in reply to luley]

Hello luley.

From my own experience, I've had a few times where I've been low in the ferritin and had a few short courses of iron over the years. My last low ferritin level was due to nosebleeds. (I had a minor pinsized graze that I attended ENT for, this was put down to the lower ferritin levels.)

GGT is usually taken in liver conditions, mine has been though sometimes it is missed when I go for the bloods (I always mention). Mine is still above normal range.

The only thing I can suggest is perhaps you could request an appointment to see an hepatologist at local hospital for a second opinion. Apparently it is supposed to now be our right to ask our GP to refer us to hospital. I think this is something you should discuss with your GP and see what he/she thinks as they'll have to do t he referral.

The only things I can suggest is to perhaps write a few things down to ask your GP. I'd be thinking about a reason for a higher than normal GGT. Ask it to be explained first.

Do you know if you've ever had a blood test that can differentiate whether the higher than normal LFTs are due to bone or liver issues? I had one of these back in 2010 so the GP knew where to go from my rising LFTs.

I cannot suggest anymore but I think if you had some explanation then you can perhaps put it aside and get on with enjoying you life right now. I resolved with myself long ago (been diagnosed with PBC 6yrs come early December but started itching early 2010), I'd just crack on with life regardless. I'll deal with things as and when now I have PBC, meanwhile won't worry about it as at the end of the day all I can do is do the best I can to keep myself as healthy as possible in the event I might never really progress further.

[luley in reply to Hidden]

Thanks again...I too wish I could crack on, but just knowing these results are 'there' worry me. My Ferritin is actually High which 'seems' the more worrying option as opposed to Low. And my GP is dismissive and I did ask for a referral but he thinks it isn't needed and once my Thyroid improves, the cholesterol will go down and all will normalise....I accept Im not trained in biochemistry and i'm not a Dr - but....again, I just wish I could be blissful in ignorance. I will try.

[Marysla in reply to luley]

If you feel your doctor is letting you down you should change.

I had a Rheumatolagist like that and eventually I switched.

Got a lit if things sorted with my new Doc.

Good luck. 😃

[LindyRich]

I have only one thing to say. "Time to change your doctor!" high end TSH range is 4 for nhs. You gp is clearly behind the times.

[Hidden in reply to LindyRich]

I've no idea about TSH, think to do with thyroid as luley stated originally.

I've changed my GP surgery twice since being diagnosed with PBC 2010 and have to say that I'm still no better off. Currently the only bonus I have is that I could get an appointment sooner than at the previous ones (and if keep checking online, often you can get one on the day if anyone else cancels any), not that I actually use this facility often, avoid doctors like the plague unless I need to see one.

[LindyRich in reply to Hidden]

TSH is Thyroid Stimulating Hormone. It's the body's way of signaling the thyroid to produce more thyroxine. Perhaps if Luley was treated correctly for underactive thyroid some of her symptoms would clear up and a clearer picture would emerge.

[Lindymarie]

Hi Luley. I had been having blood tests for thyroid for a few years at my GPs. Always coming back normal although I knew something wasn't right with me!! I requested to be referred to a hospital consultant and when I was I was told I had over active thyroid, but they would monitor me for a few months as it was border line!!! My next visit it was under active then the next visit over active during all these visits I saw different consultants. One of the consultants told me I needed radio iodine treatment and gave me all the info and told me I would have it on my next appointment!! However my next appointment was with yet another consultant who informed me my thyroid was now normal and radio iodine would make do me more harm than good. I was so upset as I knew something was not right with me and I informed him like I had the other consultants of my symptoms. Scratching my arm until it bled, very lethargic and weary , palpitations numbness etc. He arranged more blood tests while I was there and a Copy of the results were sent to me and my GP. These showed that there was abnormalities . (I'm sorry but I'm not familiar with THS and other medical terms as yet) he advised that My Gp should refer me to a liver specialist to take investigate. This resulted in the diagnosis of PBC. I have had a liver scan and endoscopy which have shown no abnormalities with my liver and no varicese. I have an appointment with my liver consultant 30th November to discuss medication and the way forward but have been informed by her that it is most likely very early stages. I have had no itching for 5 months and believe it or not I have been discharged from hospital re my thyroid as it has shown up as normal over my last few visits!!! Ha ha . The mind boggles. Sorry for this autobiography but the point I'm trying to make is for you to request to be referred to a consultant and get your blood checked for possible BPC . I would be walked BF about oblivious to my condition if I didn't see number 4 of my 5 consultants treating me for thyroid!!!! Good luck and please keep me informed..

[moepag]

If you're paying for private blood work anyway, perhaps you should have your AMA (anti-mitochondrial antibodies) levels checked. Although not all with PBC have high AMA's, most do, and it is another step in diagnosing PBC. I don't like hearing that your changing your medicine doses on your own so definitely agree you should seek a second opinion from another doctor. Good luck to you - hoping you get some answers to allay your concerns.

[GrittyReads]

Read the indo on the 'PBC Foundation site' link at top of page. Read everything on there to get clued up on PBC, and maybe talk to their trained advisors their site will give links to phone and email details.

It's not uncommon for PBC folk to have thyroid issues - and vice-versa - but it doesn't have to be the case. Yes! Change your GP - either in the practice or to another practice - check around for good ones!

It's true that ALP and GGT are the 2 liver function tests that can be worrying for PBC if they are high, but it can happen for other reasons, and PBC needs at least 2 'diagnostic criteria' for a positive diagnosis, the most common one being the presence of AMAs - if you have AMAs - as well as the ALP/GGT, then the GP should be taking action - ask at the practice reception for a copy of all the blood tests (it's your right in the NHS, they may charge for copying (mine don't if it's soon after) and there will be a larger charge for older record, copies, so ask 'how much' first.

The other test is a biopsy, but monitoring the liver tests over a period of time is usually the first track. An ultrasound of a liver cannot diagnose PBC, but it rules out other liver issues, etc, and can show large scale scarring (unlikely from what you say), so it might be worth asking for one of those - with your new GP.

The Uk seems to be in a mess with regard to TSH testing and levels, mine is out side the range, but the labs added a note to my last one that levo only to be given if it was mega-more !! I can't see the point of having the min-max ranges, if they are then just going to ignore it all!!

Hope this helps, good luck!

[Hidden]

Hello once more luley.

I thought of something else after. Due to your stating that you have a high count of ferritin, maybe this throws the LFTs out? You'd have to ask your doctor here. Could well be something else that needs considering.

[luley in reply to Hidden]

Hi Peridot

There seems to be a triangle of Low thyroid/raised antibodies/inflammation/ and high cholesterol potentially affecting the ferritin...though, the reason GP thinks Ferritin is high is due to my constant use of iron supplements and Vit C and red meat diet.....and apparently it takes quite a while to drop. At the time of initial testing I had been a regular but light drinker ( a glass of wine a day but no more)........it is not in the realms of Haemochromatosis as it is 350 ish.....so the thinking is the thyroid/cholesterol is part of the cause of this......But no one seems to have any answers. I admit to being anxious - exceptionally so, and again the GP feels this is a factor though I cant see really how anxiety affects blood results...Blood Pressure and respirations, yes but not blood tests.....I am actually now so anxious I am avoiding having any more tests as my imagination is now getting all of this completely out of proportion. Thanks for your thoughts though....