Endo appointment tomorrow.

[Cinnamon]

I finally have an endo appt tomorrow. My GP finally referred me on the basis of elevated BP that wasn't helped by antihypertensives and my continued refrain that I thought the heart issue was related to my hypothyroidism. Family history of hypo (my mother was diagnosed when in her early 30s); no family history of hypertension.

My BP started rising in my late 30s. No underlying cause ever found. I've long believed it was due to being borderline hypo, which only went overt (with treatment started) a bit over a year ago. I'm now on 50ug of levo (another push to GP, who wanted to leave me on 25ug with TSH at 1.91 -- why are they so resistant about suppressing further?).

BP this AM was 124/71 with a pulse rate of 64 -- the lowest it's been in over ten years, after 5 weeks on the higher dose of levo.

I've put together a page with reason for visit, medical history and family history for the consultant for tomorrow on the basis that NHS notes are terrible, and have a list of blood tests I think should be done all at one go: adrenal insufficiency, coeliac, vit D, vit B12, ferritin, TSH, FT3, FT4. I've also got a load of printouts linking borderline hypo (and hypo) with heart issues.

Any suggestions, help, with anything else to raise or ask for test-wise would be much appreciated. Thanks.

[Moggie]

How about your antibodies? (just trying to think what my endo ordered a couple of weeks, ago as he ordered a shed load). He did order me a bone scan and a heart scan (due to palps) and as hypertension can cause heart trouble you might want to check that out as well.

If I can think of anymore I'll re-answer but please be aware that this morning I found out that my GP had none of these test results on her computer, and apparently they don't get them, so if I hadn't been on the ball and asked, and got (after an argument and the "freedom of info act" quote) a print out from the hosp I would never have known that I have NINE out of range results. I will be photocopying these results and insisting that they are added to my file at the GP's as I consider it dangerous for my GP not to be kept informed.

Good luck for tomorrow and I hope all goes well. Let us know how you get on wont you and, like I have already said, if I can think of anymore of the tests that he ordered I will re-answer. What time is your appt? as I will look tonight and re-answer first thing in the morning if I cant think of any today.

Moggie x

[Cinnamon in reply to Moggie]

Thank you, will add antibodies to the list. Why do the specialists not share results with GP? That makes no sense. What exactly do you mean about the freedom of info act? That you simply have a right to receive info relating to yourself?

[Moggie]

It is your right, by law, to have copies of ALL your medical records if you want to, let alone blood tests. For a full copy of all your medical records it will cost you £50 (if they are on disc) and for blood tests some GP's are charging £10 - that is NOT per copy that is in total (I had three pages of result from the hosp with about 12 results per page)

When the endo's secretary refused me I offered to pay the £10 (which she didn't take) and then quoted "you cannot actually refuse me these as by law, under the freedom of information act, I am entitled to have copies". She was very flustered by this time and said she would speak to the endo and within 2 days she phoned me back and told me the results were there waiting for me. RESULT!!!!

Best days work I ever did getting those results (I keep ALL my result in a folder that go back a few years) and will often trip the doctors up by pulling these out when they are trying to tell me anything different.

It was a real surprise to me this morning that my GP had none (and according to her will not get none) of these latest results hence me copying the set I have got and taking them to the surgery so that can be added to my notes.

You didn't say what time your appt is as I know I had loads of other tests done that are not on your list.

Moggie x

[Cinnamon in reply to Moggie]

Right, I'm going to copy your words into my notebook. I have a computer file with my blood results -- my GP is usually good about giving them to me. I'm more concerned now about her getting results from tests done by the consultant.

My appointment is 4 in the afternoon.

[Moggie]

Your trust might work differently to mine or maybe my GP was telling lies but I did watch her search the computer for the results whilst telling me that they don't get sent copies.

Why don't you ask the endo when you are there tomorrow and if he says that they don't send them to GP's then ask him, if you requested it, could he do so, they did send my GP a report (whatever that means) but it didn't contain my blood results. Its worth asking and if its a no you can then request a copy for yourself. Some NHS trusts want you to put your requests in writing so maybe type something out tonight and take it with you and then if they ask for a written request you already have it to hand. You most probably wont have to submit a written request but if you go prepared then you have it covered, plus they will be mighty impressed that you have thought of it.

I wouldn't worry to much over it, the main thing is to explain your symptoms clearly and to get the blood tests that you think you need.

I will look at my list tonight and be in touch tomorrow with the tests that my endo ordered. My endo was under the impression that my symptoms were not all thyroid related and "wanted to get to the bottom of it and start ruling things out" so maybe that's why he ordered so many tests.

Moggie x

[Cinnamon in reply to Moggie]

Interesting. Your endo sounds both responsive and willing to deal in joined up medical thinking. Not the norm, as far as I can tell.

Will do the letter and bring it with me.

I have Raynaud's (another family history thing), so autoimmune stuff seems to 1) run in family and 2) need to be taken into consideration.

[Moggie]

As promised here are the list of blood tests my endo ordered for me.

Full blood count

Coeliac test

U & E's

Iron Profile

B12

Vit D

Calcium

Parathyroid

Magnesium

Full thyroid function test including FT3 and FT4

Antibodies

Cortisol

Hope this helps and good luck for later.

Moggie x

[Moggie]

How did you get on Friday?

Moggie x

[Cinnamon in reply to Moggie]

It was mixed. My BP was 138/82 (pulse 77). Endo said she was happy with this. My BP moves all over the place, it seems. In any case, I'm hoping her saying that to the GP will focus the GP away from BP and more on to thyroid. Endo requested bloods including adrenal, coeliac, another TSH, vit B12, and a couple of other things. She said I may have to do another adrenal test if this one doesn't provide useful info. I didn't feel I communicated that clearly to her. We'll see what the bloods say. My worry is that the TSH comes back so low they'll want to lower it to 25ug one day, 50ug the next. THe last TSH measurement was 1.91 in October.

[Moggie in reply to Cinnamon]

Then while you are waiting for the next appt you will need to find written evidence of having a TSH below one is best. A TSH of 1.91 is to high but trying to get this through to the medical profession is like walking through treacle.

Its hard to sit in front of these people and in a limited amount of time get your point across isn't it. The amount of times I have come out of the GP's and realised that I hadn't told her this or that. Maybe we all need to start writing everything down. I have another endo's appt at the end on the month and I think I will write down all I need to ask.

Must admit I am getting a bit battle weary now. Had an almighty argument with my GP last week, due another phone call in the next hour (which will also turn into a row) and an endo appt at the end of the month. My endo is very TSH sensitive, which doesn't help, and maybe once is a while it would be uplifting to go into a appt and not have to fight.

Moggie x

[Cinnamon in reply to Moggie]

I did write stuff down, but got sort of muddled when the endo commented almost immediately that she was happy with my BP. The only reason I was able to get the GP to send me to the endo was that the GP hadn't been able to get my BP down with antihypertensives and here we were with an acceptable BP recorded and total disinterest from the endo. I think the GP is going to be in a tizz over the whole thing.

The endo commented (about TSH level) that we'd see if it showed I have shifted to hyper which is ridiculous. I am tired, overweight, and cold most of the time (thank goodness it's a bit warmer out now). I really wish they'd focus on symptoms rather than only on blood levels.

Good wishes with your GP. I wonder if they are all now under a lot more pressure because of the recent changes to the NHS.