Consultant visit

[LottieGY]

I am due to visit my consultant endocrinologist later this week, and just wondered if anyone had any advice as to how to effectively present my case.

Some background info: I've been hypo for around 8 years, since having my first child. I thought it was being managed successfully with thyroxine, but for almost 2 years now I have felt awful. I spent a long time trying to convince my GP to make a referral for me, and this week will be my 4th appointment with the consultant, spaced 4 months apart. On my first meeting with him, I felt hopeful - he seemed to listen and understand. However, he's been obsessing about suppressing my TSH and has simply been increasing my thyroxine levels each time I visit. But nothing makes me feel better. Rather, I feel increasingly exhausted. If anything, occasionally I feel like I'm slightly over-medicated as I get palpitations, and feel unbearable hot, but still exhausted. Thankfully, my GP tells me my blood test last week finally shows a suppressed TSH.

I now feel very worried about going to the consultant, because I just don't think he will do anything to help me. The last time I was there, he suggested I was depressed (and as I'm a Psychologist, he rather patronisingly offered the cliché: "Physician, heal thyself"). However, I have suffered with depression in the past, and I know this is not the issue now. Yes, I feel very low a lot of the time, as I feel so guilty over the impact this has on my family. But, I manage to keep my life going - I work full time, try to complete work towards qualification on the side, and I have two young kids. I don't have the energy to keep this up - this is sheer willpower keeping me going, because I refuse to give up. If I was depressed, I don't think I would be able to access that willpower. But, I'm worried about my visit, because I know I find it more difficult these days to assert and explain myself, and I often end up tearful (therefore looking 'depressed').

My personal opinion, after doing all sorts of reading (much to the consultant's irritation) is that T4 meds do not work for me, and I don't imagine this will change? I would like to try alternatives, but I don't know if I'm fighting a losing battle - will he ever agree to this / is he allowed to? Should I just try to buy an alternative online? This option worries me a little as I don't want to start experimenting with my own meds without medical supervision, but to be honest I would try anything.

I apologise for babbling - I'm sure everyone will empathise with an unfocussed mind. Basically, does anyone have any suggestions of how to use my consultant appointment effectively, and not come out feeling fobbed off yet again? Or would I be better to just go it alone?

Thanks so much for taking the time to read my post. Any replies would be very much appreciated.

[greygoose]

Have you had your FT3 tested? I don't see how you can come to any useful conclusions - and I don't see how endos can, either - without looking at the FT3.

Also, have you had your vit D, vit B12, folate, and ferritin tested. If you have nutritional deficiencies, no form of thyroid hormone replacement will work for you.

[LottieGY in reply to greygoose]

Hi Greygoose, thanks for the response.

Yes, I'm sure he tests my FT3, and he says all of my results are within 'normal' range, apart from the TSH. I don't know what my results were though. This has been the result he's been wanting to make an impact on with increasing the meds. I'm worried because when we started this, he spoke about 'trying different things' (which was hopeful), and so far he's only tried upping the meds. At my last visit, I asked what we would try next, once the TSH was suppressed, if I didn't feel better, and that was when he suggested we'd have to consider anti-depressants. This was not the answer I hoped for!

When the Endo orders my tests, I think he only does thyroid related stuff. But my GP tests more holistically. My B12, iron and folate have all just dipped low but were normal around 6 months ago. So I don't think that will be helping anything, but I just don't think that's the root cause.

I just don't know how to actually get to the bottom of anything if I can't get the Endo to listen to me saying how I feel, and just palming me off as being depressed. I don't think there are many specialists in my area. I've thought about going private (can't afford it but desperate) but I don't know if I'd just end up with the same guy!

[greygoose in reply to LottieGY]

You cannot imagine how ill low nutrients can make you! Doctors make light of them, but they are wrong to do so. Deficiencies in certain nutrient can kill you. They can maim and disable you. They can affect your mind and your sanity.

And, if your nutrients are not optimal - not just 'fine', 'ok' or 'in range' - then your body cannot use the hormone you are giving it. I cannot stress how important it is to know your results before you make any decisions.

Do you never get copies of your results? You need to do that. 'Fine' and 'normal' are just opinions, not results. And, where thyroid is concerned, you cannot trust your doctor's opinion. You need to know exactly what was tested, and what the results are. You need to learn how to read and understand them. You need to take control.

It is your legal right to have copies of your results under the 1998 Data Protection Act. If you want to make a difference to your health, go and get them. Post them on here, and we will help you understand them. I can assure you, it's the only way.

[Hidden in reply to LottieGY]

You are protected by law to have your test results. They will be critical for your understanding of what you are going through and how vitamins are related to your disease. Start with getting all of the results, then back to the endo or whichever doc you feel is more in tune with your needs. Best of luck.

[shaws Administrator]

There are two possibilities that doctors are completely unaware of.

First - some of us are incapable of converting T4 (the inactive hormone) to T3 the only Active Hormone required in all of our receptor cells. Details below:-

thyroiduk.org.uk/tuk/testin...

One of our Advisers and his team have published a paper which has been accepted and won First prize and it says that some of us need T4/T3. It is called:

Relational Stability of Thyroid Hormones in Euthyroid Subjects and Patients with Autoimmune Thyroid Disease

healthunlocked.com/thyroidu...

karger.com/Article/Abstract...

[LottieGY]

Thanks both. This is the kind of thing I mean - I'm not brilliant at being assertive and I think all too often we don't know what's reasonable to ask for. I certainly will ask for a print out of my results. And try to bring his attention to the fact that there's a lot of possible things that might be wrong (not simply depression!!)

[Fruitandnutcase]

Is there anyone you can take with you to sit in on your appointment and support you?

If I were you I would get a copy of all my test results. What GG says about 'fine' and 'good' don't mean much if you still feel terrible. As far as I could see when I was being treated (I'm in remission) the NHS don't seem to go in for 'fine tuning'.

Anyway, make a bullet pointed list of the main points you want to put over to your endo, you could give him a copy to look at while you go through them. Take any evidence you have - such as the info that shows had linked you to - that will support your case.

Tell yourself you are a psychologist and every bit as much a professional as the guy in front of you, stay nice but be persistent and say 'evidence shows that ....' and then tell him what your evidence shows, have it with you. If (when?) he tries to put you down just give him a hard stare and raise your eyebrows and say something like 'really?'

In my (not medically qualified) opinion there is a huge difference between being clinically depressed and finding it depressing that no one will take you seriously. Two months before going into complete meltdown with Graves and nearly killed myself while driving my car, I was told by my GP that I was 'needing my holiday' needing my holiday - I was needing Carbimazole! I came out of that consultation almost crying with frustration. Fortunately in the end I saw a GP who knew what was wrong the mi ute she saw me.

So good luck with your visit.