Another! GP appt. Tips for making the best of it please?

[TheSnufkin]

I posted on Monday about my experience of not having my low but still apparently "normal" vit B12 etc levels not taken seriously and ignoring the fact I have a lot of symptoms of pernicious anemia (I've also posted on the PAS forum, but there are far fewer people on there). healthunlocked.com/thyroidu...

I've amazingly managed to get a face to face appointment next week with a senior GP who I have had a very good relationship with in the past. What I'm wanting to know is, how should I go about discussing my issues with her? I often get tongue tied and anxious during an appointment and then don't get to go through everything I want to say.

Should I email something to the surgery for her prior to my visit? Take a printed sheet with my concerns on it plus the NICE guidelines around vit B12 and cognitive symptoms on it? Or just make a written list for me to go through.

How can I get her to take my concerns seriously? What would you say to her?

Again, so many thanks in advance for your help, this forum is just incredible!

Levels for information:

Thyroid

Serum TSH 1.841 mU/L (range 0.57-3.6)

Free T4 8.7 pmol/L (range 7.9-14.0)

Iron (GP note "borderline low transferrin saturation")

Serum Iron Level 14 umol/L (range 2-32)

Serum TIBC 65 umol/L (range 28-54)

Iron Transferrin Sat 21.5% (range 22-36)

Blood haematinic levels

Serum B12 213 ng/L (normal range above 203ng/L which is equivalent to 150 pmol/L)

Serum folate 6.3 ug/L (normal above 4.0 which is equivalent to 10 nmol/L)

Serum Ferritin 18 ug/L (normal range 11-307). This has dropped from 28 in June

Vitamin D

Serum Vit D3 level 71.5 nmol/L (normal range 50-)

Blood Count

I'm in the abnormal ranges for

Red blood cell distribution width 14.3% (11.6-14)

Eosinophil 0.0 (0.02-0.5)

[SovietSong]

Hi,others on here are better equipped to comment on vitamin levels etc but your t4 level is very low,just inside the lower end of the range.Was your t3 not tested?it is also likely low.Most GPs mine included only test tsh and t4.

[TheSnufkin in reply to SovietSong]

Hi, thanks for replying. I've just started on 50mcg levo up from 25 and the test results were taken before the increase. I still can't believe I was only started on 25mcg, who knows what the GP I saw was thinking.

[SovietSong in reply to TheSnufkin]

How long since your increase to 50mcg?Are you booked in for more bloods in few weeks time?Most people eventually need 100-150 daily.I’m currently doing well on 135 daily.It’s not easy I know,increasing then having to wait for weeks before retesting and adjusting as required.Has taken me over a year to get back on a settled dose.My GP had me over medicated and then woefully under medicated so I had to go right back to the start and work up gradually.

[TheSnufkin in reply to SovietSong]

I was given the increase on Monday so have only taken two 50mcg tablets so far. Bloods booked for 6 weeks time.

The surgery has been very, very weird about even saying that I'm hypo because my TSH has been "normal" in all but one test despite my T4 levels being under the "normal" range. One GP just said that I had a "sick thyroid" (because my T4 levels were low but my TSH was normal) and there was nothing they could do about it. I think they just make things up as they go along.

[SovietSong in reply to TheSnufkin]

My surgery refuses to do absolutely anything unless the tsh is over 10.I had so many symptoms just over a year ago,weight gain,extreme fatigue,constipation,earache,migranes lasting weeks at a time,palpitations,raynauds,chills,slurred speech,lightheaded,gastro issues,bad skin.That’s just one’s off the top of my head.My tsh is now currently around 0.27 and the symptoms have all but gone.There are three doctors at my surgery and they refused to believe that the above symptoms were caused by the one thing.One of them told me the stomach issues were “much of a muchness” and that I should take paracetamol for the headaches.Also sent me for multiple X-rays for joint pains in hands which of course all came back clear.Did you ever think of testing t3 yourself?

[waveylines]

I'd follow up the B12 side as per my suggestions on your last post. And present her with a print out of the assessment sheet on B12d.org. Ask for Intrinsic Factor Test. (test for PA as said before picks up only 50%). Ask for B12 supplements/injections post that test. Point out that b12 is plentiful in your diet (assume you eat meat?) and if this is the case at the low level you are injections might be the better option. I doubt she will increase your levo further as its been increased a few days ago to 50mcg.

They need to address your low iron point out labs comments.

Point out that you feel low thyroid, low B12, low iron all need to be addressed as all three cause serious fatigue plus other symotoms before considering any other diagnosis and the suggestion of CFS/ME upset you. I'd also point out that the labs are admitting that their new machinary is missing a lot of B12 deficiecy as the B12 assay on the latest machines is inaccurate giving higher b12 level than they should. Meaning you could well below range. Point out the Nice guidelines.

Be pleasent write your points down. Don't underplay your concerns though. Ask for a plan of action and a review date. If you like her ask if she will follow through with you.

[TheSnufkin in reply to waveylines]

Thankyou so, so much for your advice, you don't know how much it has helped me to have people prepared to give advice and information and explain things to me. I had so much yesterday that I really need to sit down and distill everything. I know what I'll be doing this weekend!

[waveylines in reply to TheSnufkin]

Awwwww we have all been there. It IS a lot to take in as you have several elements that need addressing. Take your time.... Hugs xx

[Rsiarr]

I now always write a bullet pointed list and sometimes additional notes to refer to. It's been really helpful in making sure I don't forget anything, but also making me feel more confident and articulate. I go over it several times before an appointment to help get it into my head and also take it along with me