starting to give up

[Kayteegirl48]

my latest blood results are TSH 2.37 T4 12.7 T3 4.1 tpo antibodies .561 tg antibodies.3.7 doctor still wont refer me as im still within limits. I wouldnt mind that but i am experiencing every symptom severe depression crying every night no appetite but weight gain constipation hair falling out always cold temperature between 34.4 to 36. Can you go to privately to a endocrinologist whats the cost or buy a low dose of thyroxine to see if it makes any difference. i had sickness bout a couple of weeks ago and didnt eat anything for 3 days and all i lost was 1 lb dont know what to do

[Kriticat]

Someone more knowledgeable will answer very shortly, this is a wonderful group, and you're not alone... they will ask you to post the reference ranges so they can understand your results, and will advise you. I was never able to get help from my GP, but since living in Greece I am finally getting treated . You can go privately to an endocrinologist in the UK, Thyroid UK has a list of ones that members have found helpful. Email [e-mail]

I know exactly how you are feeling and although I'm not fixed yet I felt so much better once I started treatment. Don't give up, you've done the right thing coming here.

[SlowDragon Administrator]

As per your previous post

ESSENTIAL to test vitamin D, folate, B12 and ferritin levels

Hairloss often linked to low iron/ferritin

Please add most recent vitamin results and ranges

Are you still taking folic acid on prescription

Antibodies were negative on last test

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

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.

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

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

Perhaps consider Private ultrasound £100

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am

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 and money off codes

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

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors

[e-mail]

[Hedgeree]

Hi Kayteegirl48,

Please don't give up!

I and many others on the forum sadly have also had similar experiences where the gp won't take your symptoms seriously. It took some time for me to get a referral to an endo and ENT eventually getting treatment after writing to the gp and practice manager.

I'd look at some of the suggestions that SlowDragon has made. With you saying your hair is falling out that is often related to ferritin and iron levels. If it's possible is there another more useful GP you can see in your surgery? You don't have to see the same one. Another may be more sympathetic and listen to how you're feeling.

Ask them to do an iron panel (ferritin) vitamin D, B12 and folate. Once you get results for these you can post them on the forum and others will comment to help you.

I've always had very long and thick hair but when my ferritin was low in range it really thinned out. I'd taken it for granted so it was a shock the amount of hair I was loosing once I started to try to increase my levels this has thankfully slowed.

It's taken some time for me to get to this point but I'm now being treated and have been prescribed thyroxine. The endo I saw wasn't great so I would focus on getting your vitamin and iron levels tested as you'll need these to be good if you do eventually get thyroxine prescribed.

Take care.

[arTistapple]

Over twenty years ago my TSH was .3 higher than yours and my T4 was a tiny little bit less. No T3 measure. I had horrendous symptoms but nobody even discussed the possibility of hypothyroidism. In fact many years before that, with milder symptoms, I was told in no uncertain terms “You can’t be hypothyroid. It’s very rare”! There is a lot of discussion (misunderstanding) amongst medics about subclinical hypothyroidism and whether it should be treated. They don’t want to discuss it with patients. They can’t make up their minds, so guidance is slim pickings. Like others have said get your vitamins etc checked because it really can make a difference if you are not optimal on those. I waited twenty years for my diagnosis and I could kick myself now. I realise now how strong minded I have been to have kept struggling on. I always thought it was just me! This forum has helped me enormously and I know it’s not ‘just me’! It’s just a condition we appear to have very little control over. BUT keep going, keep pushing. You seem a lot wiser than me. Good luck and best wishes. A plan will appear with guidance from the forum.

[Lemondrizz1]

Hello Kayteegirl48

I am sorry that you are struggling and feeling so unwell right now - I am quite new to all of this so cannot advise you on blood results - but have been asked for my experience regarding T4 tests - In May 22 after ten months of feeling really ill with so many symptoms I only once had a T4 test done which was 9.1 along with a TSH of 5.6 - because of this I was started on 50mcg of Levothyroxine - this did nothing to improve my symptoms and after a battle with GP's my Rheumatologist agreed to an increase to 75mcg - I then experienced a slight improvement in symptoms after 3/4 weeks for a couple of weeks only - but this then deteriorated again - when I had my 6/8 week blood test I asked that I would be allowed a TSH/T3 and T4 tests - but only received a TSH of 1.2 and T3 test of 4.2 - because of this I begged my GP to give me a further increase to 100mcg which I am now on and 4/5 weeks onI was just beginning to feel the symptoms lifting - which was so exciting after 17 months - and I was just beginning to be able to feel well enough to start to do things again.

However I have come down with Covid this week !! Not at all what I planned and hopefully it will just be a blip - having had all the vacinations -

I can see that our symptoms are different but non the less debilitating - I asked to be referred to an Endocrinologist but was told not necessary - for me the hardest is not getting proper testing ie TSH only and then being told NFA - I have found the Forum very helpful as I have progressed through this journey - I understand that despite my GP asking for full testing - the Laborotories make the decision to just do the TSH - so you never get a full profile of the Thyroid - When I need the next testing at the end of December - I plan to get private testing to be sure I can see where I am -

I think that you can ask to see an Endocronologist privately - but I think that there are certain criteria that you need to meet before they agree -

It is so hard when you are feeling so low and unwell to have to fight your own battles and it is not easy - but do try - I always go armed with a list of questions and the best advise I had was to let your GP see how you really are - this involved having a melt down in the surgery and asking regardless of my test results to please treat me and my symptoms -

I hope that this might help a little and do try to be your own advocate to get what you need.

Reading so many stories here - made me realise that we are not alone - take care

Lemondrizz

[Nmaezi]

Please give normal range for the tests