Frustrated 😤

[filenada]

I feel like I need to rant. Went back to see another doctor yesterday because I have a noticeable hard bit on my neck, the gland I assume. Having a flare up that started on 29th June. Thought I was getting a horrible flu but not bunged up. So pain, knackered, hoarse voice, no energy couldn't make work. Doc increased my thyroxine to 75mcg on the 3rd July. The doc I saw yesterday felt my neck and told me everything feels fine and she suggests that because my gland is struggling to work it has changed in form and that is why it is noticeable?????. So while I was there and remembered I asked her about my bloods and suggested that my free t3 and 4 be checked at the same time to ensure that they get a clear picture of conversion. She told me that the surgery don't request t3 be checked, it's up to the lab to do it if they feel it necessary depending on the tpo, but she will look into the t3. Apparently I have to get my bloods checked in August but last doc I saw didn't tell me this, I was just to go back to see him if I still felt like c**p Honestly!!!!!!. I digress, this doctor yesterday didn't seem clued up because I had to assure her that the hoarse voice was all down to the thyroid and well documented. She wanted to know how long it had been this way and seemed bewildered when I told her 23 years but, been happening every couple of months for the last three years and was this way for 4 months before starting thyroxine 50mcg on 4th April. She offered ENT, but been there and was given speech therapy (all before diagnosis) then told I was tensing my muscles, therefore doing it to myself and making my voice be this way. Doc doesn't believe there is anything to warrant an ultrasound or scan. I am so p****do off with it all. I understand that it is a long road to get everything on the right track, not looking for a miracle, but it has taken 23years to get diagnosed. I'm just so tired, don't know how long I can keep working, but I can't afford to stop. Oh, I have taken advice from here and started gluten free. Early days yet. I'm sure I wanted to do more of a spout, but alas I have lost my words.

[shaws Administrator]

23 years!!!! Such a long time to be undiagnosed and probably by then doctors who knew all about diagnosing by symptoms and left the NHS and only private ones would have still prescribed NDT due to clinical symptoms.

No doctor nowadays is aware of any clinical symptoms and I'll give you a list which you can tick off.

thyroiduk.org.uk/tuk/about_...

Blood tests always have to be at the very earliest, fasting (you can drink water) and allow approx 24 hours between last dose and test and take it afterwards. This allows the TSH to be at its highest as it drops throughout the day and may mean an unnecessary adjustment to your dose.

Doctor should check B12, Vit D, iron, ferritin and folate as we need everything optimum.

The aim is a TSH of 1 or lower with optimum minerals/vitamins.

Always get a print-out of the results with the ranges to enable members to comment if you wish.

[filenada in reply to shaws]

Thank you for replying, having a wee struggle finding my way around this new phone. I will head to the library and print stuff there

Regards, filenada

[SlowDragon Administrator]

Your previous test showed you have Hashimoto's. Very many of us find changing to gluten free diet. Have you tried this yet. It needs to be 100% to be effective

amymyersmd.com/2017/02/3-im...

Very important to get vitamin D, folate, B12 and ferritin levels checked - extremely common that they are too low preventing thyroid hormones to work well

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take immediately after.

Selenium supplements may help too

[filenada in reply to SlowDragon]

Thank you, yes I followed advice given when I was on last time but I think I went two mornings without my pill, oops silly me. I am just learning the gluten free route. Tried the cheese, it stinks, but bonus, I didn't feel sick after eating it. Generally I avoid stuff that has me feeling puke so I do mostly cooking from scratch and the only dairy I have is dairy milk chocolate 🍫 😁

Regards, filenada

[SlowDragon Administrator in reply to filenada]

Cheese is gluten free. Or perhaps you meant dairy free?

Gluten you need to read labels carefully it's often hidden....any thing with wheat, barley or Rye

But you can get lots of gluten free alternatives e.g. GF beer, even gf pastry,

[filenada in reply to SlowDragon]

What is eye? Oh, Rye. Yeah I now read everything much to my hubbys dismay, tee heel. I don't or dairy doesn't agree with me. I will look out for the beer though. Might have one tomorrow. I quite like beer, and now I fancy one. Have a good weekend.

Regards, filenada

[levelslass in reply to filenada]

Beer no good. Contains barley and poss wheat. Also may have to avoid anything with maize ie cornflour, dextrose, glucose syrup, polenta. No oats, No rice. Dietician at GP said rice is a grass ergo contains gluten

[greygoose]

'The doc I saw yesterday felt my neck and told me everything feels fine and she suggests that because my gland is struggling to work it has changed in form and that is why it is noticeable?????'

She means a goitre. lol She probably lost her words, too! You're right, she's not very clued up - none of them are. Ever considered self-treating?

[filenada in reply to greygoose]

Well I reckon I have to do a whole lot more studying to be able to feel confident that what I was doing was right. I enjoy your posts. Very enlightening. Anyway I'm just in from work so I'm hungry. Thank you. I know you are always there looking out for every one.

Regards, filenada