Nightmare visit to the Doctors!

[rosserk]

I had an appointment with my Doctor this morning to discuss abnormal liver function, which according to the receptionist was slightly raised. Only to be told that my liver function test was three times the normal range! It is still over the normal range but has improved significantly. They are not going to do anything other than wait and test again in a few weeks. So that’s something else to worry about. They have no idea why I have an abnormal liver function but agreed it could be caused by my sjogrens.

She then said she was unhappy with my ‘suppressed’ TSH and wanted me to drop my dose to 125 mcg then 100 mcg from 150 mcg. When they retested my liver function she’d requested a thyroid check and my TSH was 0.01, my T4 was 28. I didn’t know they were checking my thyroid so I’d already taken my Levo and the test was at 8:30 so my T4 wasn’t accurate! They didn’t test T3. I had a test by medicheck two weeks prior and my

TSH was 0.01 (0.27-4.20)

T4 23 (12-22) and

T3 6.3 (3.10-6.8)

The ranges are the same for NHS test

She was extremely insistent that I needed to lower my dose back down to 100 because she says my results were fine on 100mcg! My results might have made her happy but I was actually so sick I couldn’t get out of bed! I was going to ask her for some 50 mcg tablets but I didn’t stand a chance! I tried explaining I felt better than I’d felt in three years and that I could actually function and have some quality of life but she was having none of it. She’s a really lovely Doctor and to be honest if it wasn’t for her checking my thyroid I’d still be back where I was three years ago, but why won’t these Doctors listen to us, why would they insist on cutting your medication when you feel good? She was extremely concerned about osteoporosis, even though I said I was willing to take the chance to have some quality of life. I get worked up into such a state when I’m at the Doctors I don’t make any sense and I just know they all think I’m stupid and I really don’t blame them. I’ve gone from being an academic with a career in teaching to someone barely able to string a sentence together!

I also asked the receptionist for a printout of my blood test results and was handed a form to sign! From now on every time I want my blood test results I must sign a request form and wait for the Doctor to approve request. That means two trips to the surgery!

I give up this is all a load of 💩

[shaws]

Just tell GP you are not adjusting your dose as it wasn't explained that the blood test was for thyroid hormones. They are ignorant about taking levo before or after blood tests. We know it is afterwards.

[rosserk in reply to shaws]

Thanks Shaws I have no intention of lowering my dose! I just wish I had some support from my Doctor. I have some spare tablets and should be able to continue on my dose as long as she doesn’t change my prescription! I don’t think she will but my designated Doctor might. I don’t go to him any more because he refused to increase my Levo from 25 mcg! I’ve been increasing my meds without my doctors approval and then telling her what I’d done later. She went along with it to begin with but she’s not having any more of it! 😭😭

[Judithdalston]

Just sending good wishes...it's so sad when you read stories that years previously sound like yourself, yet you would hope in intervening years knowledge / treatment etc had got better...but it hasn't. It's so unfair that uncontrolled hypothyroidism makes intelligent articulate women ( ok some men too) into patients who can't argue themselves out of a paper bag never mind have a informed conversation with a doctor! Yet another going down DIY route effectively - it's so much easier to do and good for mental wellbeing nevermind better thyroid health. Good luck.

[rosserk in reply to Judithdalston]

Thank you Judithdalston that is so kind of you. Thanks mostly for giving me a reality check and of course your good wishes!

It’s so easy to forget that I’m not the only one suffering and that bad things happen to other people too. It’s just really hard when a Doctors appointment comes around and you just know it’s no going to end well. I’m just so tired fighting with everyone, I’m going to do my best to stay away and just keep getting the repeat prescriptions!

You’re doing a great job helping people with your words of wisdom and experience of this horrendous disease, keep up the good work it’s very much appreciated 💐💐

[Judithdalston in reply to rosserk]

Many thanks Rosserk...

[Peanut31]

Hi rosserk

I had a Liver function test early this year (health check) and it flagged up it was out of range, once I looked into it further it can be thyroid related so this could be your case as well.

With regards your Levo decrease that your GP states she wants to reduce. Tell her your prepared to take that risk to function as a normal person, tell her that we should also go by how the patient is feeling not just by results.

I went armed with information (Dr Toft article) about no real evidence of heart issues etc , in case my GP was going to be awkward.

Does your surgery offer an online service? You just have to register then once the GP has looked at your results you can access them on line. The surgery gives you a username and password. You also have access to your medical records etc.

Best Wishes

Peanut 31

[rosserk in reply to Peanut31]

Hi Peanut31 thanks for taking time to respond to my post.

I asked the Doctor about my thyroid affecting my liver function but she didn’t think they were connected. But I guess if she’s wrong about lowering my Levo she could be wrong about the cause of my liver function. I had vasculitis which is what prompted my liver test. It came in really quickly and they were concerned it could be sepsis. I found several articles online about vasculitis and abnormal liver function connected to sjogrens so I’m convinced it’s that and not my thyroid. It’s interesting that the rash (vasculitis) has disappeared and my liver function test has come down, which is typical of a flare from sjogrens. I had lots of symptoms of sjogrens during this time.

I have to retest in a couple of weeks to make sure it’s still heading in the right direction.

Has your liver function returned to normal now? You could be right mine could be related to thyroid but I’m not sure I will ever know, unless it gets worse?? 💐

[Peanut31 in reply to rosserk]

I've learnt as my thyroid journey continues and having seen an Endo and GP's they don't always know best.

If I had listen to my Endo and my GP I would of been a Zombie and on anti depressants thinking that my life was going to be this forever a living hell.

Thanks to the advice on here, saying goodbye to my Endo and being very confident and knowledgeable when speaking with my GP, I had made good progress with my treatment.

Best Wishes

Peanut31

[rosserk in reply to Peanut31]

Yes not listening to the Doctors does seem to be a winning formula with thyroid disease 😜

[humanbean]

A liver function test (LFT) is not just one test it is several tests.

patient.info/doctor/abnorma...

You could have one test which was abnormal and all the others might be fine. And to find out what is going wrong will depend on the test(s) that are abnormal.

.

Do you have a sympathetic and supportive partner, friend or relative who can attend doctor's appointments with you? I started taking my husband along to hospital and GP appointments some time ago, and I wish I'd done it decades ago. It's amazing how much of a difference it makes to doctor behaviour and politeness when there are witnesses. And the witness can help you out when you are struggling for words, if they know what you are trying to say.

But be aware that any witness must be 100% trustworthy. One person from this forum took her father, and the father landed her in it with the doctor, saying he thought his daughter was mentally ill, when in fact she was hypothyroid and either untreated or under-treated.

[rosserk in reply to humanbean]

Thanks HumanBean. I don’t know which part was abnormal but I will have some idea tomorrow if I pick up the blood test. I’m actullly a little scared to see it now!

I don’t have anyone I could take with me, my hubby is adorable but he’s so quiet and shy he will just sit there!

I’ve just this minute had a call from the hospital booking me in for a scan of my liver on Friday! Feel like I’m being kept in the dark... 😭😭

[humanbean in reply to rosserk]

Really, the person you take with you doesn't have to say anything if they don't want to. Just sitting there makes them a witness. You could ask your husband to record the appointment on his phone (discreetly). That might be helpful.

[humanbean in reply to rosserk]

Good luck for Friday! At least it shouldn't be painful.

[elwins]

Sorry you are having all these problems, I can a copy of my results very easily, as long as the doctors seen it, I just ring up ask for a copy and find it waiting for me at reception. Last time I picked it up 20 minutes after asking for it. Best of luck for your appointment.

[rosserk in reply to elwins]

Yes that used to be the case at my surgery. I would walk in ask for the results and they’d instantly print them off. Today I was told it’s a new directive and all surgeries will be following suit! Let me know if they lied to me and you still get yours easily? 😜

[Marz in reply to rosserk]

Sorry - my understanding from afar - is that you are entitled to copies of your results. What has changed is that they can no longer charge for them

nhs.uk/chq/pages/1309.aspx?...

[rosserk in reply to Marz]

I can have them and they are free of charge but now I have to sign a request form and wait for the doctor to confirm. The receptionist told me it was nationwide and all surgeries would be doing the same. I can’t see it myself I think that’s probably just what she’s been told by the practice!

[JaniceJ7 in reply to rosserk]

I can pick up my results with no problems but last time I had to sign a form and was told it was to do with new data protection laws. I was told I would have to sign it every time but picked up results for one blood test on two different dates (Vit D took longer to test, I think) and second time she checked to see form on their system. I'll be interested to see if I need to sign it next time. It did have a section asking why I wanted the results (which was optional). I think I said I wanted to keep track of them. I think the GP has to see them first but I usually say I have an appointment to discuss results with GP and want to look over them beforehand.

[helvella in reply to rosserk]

The Information Commissioner's Office expressly says that you do NOT have to sign a form:

Should we provide a specially designed form for individuals to make a subject access request?

Standard forms can make it easier both for you to recognise a subject access request and for the individual to include all the details you might need to locate the information they want.

Recital 59 of the GDPR recommends that organisations ‘provide means for requests to be made electronically, especially where personal data are processed by electronic means’. You should therefore consider designing a subject access form that individuals can complete and submit to you electronically.

However, even if you have a form, you should note that a subject access request is valid if it is submitted by any means, so you will still need to comply with any requests you receive in a letter, a standard email or verbally.

Therefore, although you may invite individuals to use a form, you must make it clear that it is not compulsory and do not try to use this as a way of extending the one month time limit for responding.

ico.org.uk/for-organisation...

[Hillwoman in reply to helvella]

It's amazing how creative doctors can be when they're looking for obstacles to throw in one's path!

[waveylines]

Rosssrk last week on request I got copies of my blood tests.

[rosserk in reply to waveylines]

Yes I’m suspicious that this is nothing to do with new legislation and it’s just my surgery being ridiculous!

[penny]

I’m missing something here...if you are entitled to copies of your test results, why does a doctor have to sign to say that it is ok to have them? If you are entitled to them he cannot say ‘no’. If he cannot say ‘no’, why ask as the answer would always be ‘yes’.

[rosserk in reply to penny]

The Doctor doesn’t have to sign, he has to agree to my request. I said exactly the same thing to the receptionist when she told me, he can’t refuse to give me my results so why do you have to ask him?

Up until two weeks ago I would walk in ask the receptionist for my blood test results and she’d immediately print them out. She said it’s all because of Facebook data breach. She phoned me an hour after I left the surgery and said my results were ready. When I pick them up I’m going to ask again. I can see that I might have to sign a request form for their records but waiting for Doctors approval is ridiculous! I don’t want my Doctor knowing every time I’ve asked for my results. 😭

It will be interesting to see if anyone else has the same experience...

[FancyPants54 in reply to rosserk]

I've never been told I can't have results. It's always been instant print on request, even before the change in the rules to say no surgery can charge for them etc. They have been instructed, by a change of rules, to make patient information more easily available not harder. Perhaps a letter to the practice manager wouldn't go amiss?

I have had a few issues with receptionists talking nonsense. Just a couple of weeks ago I phoned up to book a blood test with the nurse, using my own private test kit. I have done this lots of times now. I agreed it with the practice manager a year or 2 ago. I pay £20 for the service, which I really appreciate. Anyway, last time I was told (in stringent tones) "Oh we don't do that here". I said that they did and I'd had it done several times before. She still said no so I told her to go and speak to the practice manager, which she did. I was then able to book my appointment!

[Marz in reply to rosserk]

Why not ask her for a copy of the new guidelines that says you cannot have them until you have signed a form. I think it has always been that Docs have to sign off results before patients can receive them - pity they don't look and understand them before they do so !!

[penny]

What a waste of the doctor’s time.

[rosserk in reply to penny]

Yes, time they could be using to educate themselves on thyroid disorders! 😜

[FancyPants54 in reply to rosserk]

If only!

[Cleobear]

I too had raised liver enzymes a few years after being diagnosed and on levo only. After a few years of this being flagged up and no action taken a locum GP mentioned that this could be due to Paget’s disease of the bone (which my father had and eventually developed into cancer). I was referred to an Endo who like all the GP’s I had seen previously tried tweaking by levo. After no decrease in liver enzymes we tried a trial of 10mcgs T3 added to levo. My liver enzymes have been normal since but now they want to stop my T3.

[rosserk in reply to Cleobear]

Hi Cleobear, that’s really interesting ! Prior to my diagnosis and starting levo my liver function test was always normal so you may have a point. I’m terrified of going for the scan Friday I’m imagining the worse. The first liver test that raised concerns was four times the normal range the second test showed a decrease of a third so I’m hoping that was promising ☹️

[bantam12 in reply to rosserk]

I've had 4 liver enzymes way out of range for over 10 years, had scans, mri's, mrcp's and a liver biopsy, nothing found. Don't be terrified of the scan, it may well be clear.

[rosserk in reply to bantam12]

Thanks Bantam12 that’s really interesting to read someone else has had the same issue 💐

[bantam12 in reply to rosserk]

Thyroid problems causing elevated lft's is not uncommon, my levels are just monitored yearly now with an occasional ultrasound thrown in.

[rosserk in reply to bantam12]

Hi Bantam12 just got back from my scan and it was all CLEAR ! I do have a small gallstone but apart from that I’m fine. I am so relieved, they scanned my entire upper stomach, kidneys, spleen, liver, gallbladder and pancreas. Like you say maybe this is common in Hashimotos 😜

[bantam12 in reply to rosserk]

Good news and I'm not surprised 😊 Do you know which enzymes were elevated ? My ALT, ALK and GGT are all up.

[rosserk in reply to bantam12]

Nope I haven’t had a chance to pick up results. 😜

[Cleobear]

Glad that’s heading in the right direction. Just thought it may be useful to know. Not sure if anyone else has had these issues, I havent seen it mentioned on the forum. Wishing you good progress

[rosserk in reply to Cleobear]

Scan all clear! Yeah!!

[fortunata]

If she’s concerned about you getting osteoporosis, tell her you’re willing to have a dexa bone scan twice a year. That’s what I told my endocrinologist when he warned me of osteoporosis.

[rosserk in reply to fortunata]

My mother has osteoporosis and she’s 76 she’s had it most of her adult life and she’s managed to live with it. I’m probably a prime candidate in any case. 😟