Will I ever feel normal?

[BoyerV2]

I got diagnosed with Hypothyroidism in September of 2020. At the time I was so happy. I was being called lazy, my hair was thinning, I felt ‘slow’ all the time, and had no idea why. When I was diagnosed I felt like I was finally going to have my shackles lifted from me, and I would start to live a normal life. In reality, everything has just gotten worse. I’m more tired than ever, going to the doctors every few months telling them I don’t feel right, only to be told “your thyroid levels are fine”. My liver enzymes are slightly raised so I’ve been booked in for an ultra sound and more blood tests, but I know nothing will come of it. I feel lost. Does anyone have any recommendations, because I’m feeling really depressed lately. Thanks.

[Rapunzel]

Sorry you're feeling rough. Will you ever feel normal? You can't know what a big question that is for a thyroidie. Your first shot is reading on here. Look under topics then take your pick. Telling you that your levels are 'fine' means your GP is is not fine. Go back to your practice and ask for a printout, then post your fine levels here.

There are many wise and knowledgeable people on here but I would imagine most are asleep right now. Maybe don't hold your breath at this time of the night 🛏️ ☺️

[greygoose]

Hi BoyerV2, welcome to the forum.

I know exactly how you feel - and felt. I, too, was joyous when I got my diagnosis. So, that was what had been wrong with me for all those years! I felt vindicated.

But, unfortunately, that feeling didn't last because I had an absolutely useless endo. When I started levo, I got worse rather than better, and she blamed it on my 'negative attitude'!

So, began a long journey of hopping from endo to GP to useless endo, to useless GP, and on and on until... Well, you can read all that on my profile, if you're interested.

It was only when I started to take charge myself, to learn about my disease, that things started to get better - well, one of us had to know what was going on, and it certainly wasn't the doctors.

Doctors think that diagnosing and treating hypo is a doddle. They have no idea how complicated it is. They think that giving the patient a little white pill, every day, until the TSH comes down to somewhere within range, is all there is to it. It isn't. It about the connection between thyroid hormones and other hormones and nutrients, etc. etc. etc. It's about getting all your ducks in a row. But that makes it sound more complicated than it is. And, once you get used to it all, it's really not that complicated.

So, start by getting your blood test results from your doctor's surgery for as far back as you can - preferably from when you were diagnosed. It's your legal right to have a copy. But, don't ask the doctor! Doctors don't like informed patients because it tends to show up their ignorance. Ask the receptionist. You need to know exactly what has been tested and what the results where, and what all that means. Don't worry! We can help you with all that once you get hold of the numbers: results, ranges, dates and doses. And, if they ask you why you want all that, just say it's for your own records - because you do need to keep your own records. And, I'm willing to bet that you are under-medicated because your doctor knows so little about thyroid that he is dosing by the TSH. It happens all the time.

And, the more you know and understand about all this, the greater your chances of you getting back to 'normal' - whatever that is! Not a word we like on here. Getting back to the way you used to be. Taking charge of your own health and not putting up with the BS and gaslighting we all get from doctors who have no idea what they're talking about, and are praying you don't notice.

So, ring the surgery tomorrow, and tell them what you want, and say you will pick up the papers at their convenience. But, if they give you any lip, just remind them that that is the law, and there are ways of enforcing that law if they are no co-operative. (By rights, you should be able to access all this information on-line, but many, many surgeries are dragging their heels so it isn't always available. But, ask anyway. You never know your luck!)

[FancyPants54 in reply to greygoose]

I would add, first ask them to email the results to you. Mine do that. It saves a trip and they usually do it quickly.

Any issue with that, then pick them up of course.

[BoyerV2 in reply to greygoose]

Thank you so much for the reply. Reading all these comments have made me feel a little better and but more motivated. I went to the GP yesterday and asked for my last blood results back, but I’ll ring again and ask for all of them. I was thinking about ordering one of the home blood tests, but I don’t really feel comfortable enough doing one of those.

[greygoose in reply to BoyerV2]

Wait and see what results you get from the surgery first. But, if they don't do all the right tests - which most of them don't - it would be a good idea to do a home test. What is it that makes you feel uncomfortable doing it?

[Hennerton]

You have had brilliant advice and all I can add is that my own surgery will email me all my results, so it is worth asking in a very calm and authoritative way if they will do that. It will save you a journey in Christmas traffic.

[FancyPants54 in reply to Hennerton]

Mine do this too. A quick phone call and my results are in my In Box about 10 minutes later.

[Hennerton in reply to FancyPants54]

It’s brilliant and I am always surprised when members on this site have trouble getting results. Clearly the message has not got through to all GP practices yet.

[SlowDragon Administrator]

Welcome to the forum

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Have you had thyroid antibodies tested to see if cause of your hypothyroidism is autoimmune thyroid disease.

When were vitamin D, folate, ferritin and B12 last tested

High cholesterol levels suggests you are perhaps not on high enough dose levothyroxine as high cholesterol is linked to being hypothyroid

ALWAYS get thyroid tested as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Please add most recent results and ranges if you have them

Or, come back with new post once you get results

[SlowDragon Administrator]

As others have said…

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Far too often only TSH is tested and is completely inadequate

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

plus both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

[SlowDragon Administrator]

One last thought

Do you know it’s essential to always take levothyroxine on an empty stomach and then nothing apart from water for at least an hour after to get maximum absorption out of each dose

Essential to remember to take levothyroxine everyday. A weekly pill dispenser can be helpful to see if you missed a dose

[serenfach]

Welcome! Normal? I dont think anyone has ever called me normal! But I know what you mean - you just want the old you back. It may take a while, and, as most of us have found here, you have to take control for your own health. This forum is brilliant at helping us find the old "me", where we have found the medical profession is not so good.

Get your results, as others have said. Get past results too - you are legally entitled to the lot. That way you can see a progression and correlation between your blood tests and what you were taking.

Bung them on here and the lovely members will help further. Hug.