Newly diagnosed

[Trendywends]

Hi all just been diagnosed and feel up and down. Been put on 50mcg levothyroxine and symptoms feel worse than before being on meds. Woke up with huge pains in arms and could bare the pain when even combing hair. Actually feeling rather down and have never felt fatigue like this in my life.

[The_will_of_Jill]

Well you have joined a great site and I'm sure you'll get a lot of information here. So far it seems that level thyroxine has a lot of side effects for some people or at least an adjustment. But I am new here and still pretty uninformed and spite of the fact that I was diagnosed many years ago

[The_will_of_Jill in reply to The_will_of_Jill]

Levothyroxine* sorry

[helvella Administrator Thyroid UK in reply to The_will_of_Jill]

You can edit your own posts and responses!

support.healthunlocked.com/...

[The_will_of_Jill in reply to The_will_of_Jill]

I am thinking of trying the natural stuff

[SlowDragon Administrator]

You should have thyroid blood test 6-8 weeks max after starting thyroxine. Highly likely you will need a dose increase after results are back

Ask your GP to also test vitamin D, folate, B12 and ferritin if these have not been tested already. Very common for these to be too low and may need supplementing to help thyroid hormones to work

Do you have the results of tests before you started on Levothyroxine. If not ask receptionist for them. Post them on here. Do you know if Thyroid antibodies were tested, if not then these also need testing.

Always keep good records of all test results including ranges and a note along side as to how you were feeling at the time

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 straight after. This keeps TSH at its highest, which is all medics tend to look at.

Assume you know that Levo should be taken on an empty stomach and then nothing apart from water for at least an hour after.

[Trendywends in reply to SlowDragon]

I got put on iron tablets first before second blood test for thyroid as iron levels were low. Have no idea what any the numbers were but will try and get hold of them. Taking meds at night just before bed as don't want iron tablets to interfere with them.feeling sick once I take meds I take it that's normal too. Just feel worse now than I did before I'm sure my body will adjust just hope it's soon

[Trendywends in reply to SlowDragon]

TSH 11.9

Free T4 13

Ferritin 8

Help what does this all mean

[Hidden in reply to Trendywends]

Your TSH level should be posted your result (11.9) and then the range (sometimes in brackets). Your TSH is still high as you have just started treatement. We like to aim for a 1 or even less for TSH. Free T4 - again the range needs to be posted beside your reading - yours is 13. Ferritin - yours is 8 (ditto ranges need to be there in brackets). I have low ferritin too - it's been advised here that our level needs to be at least 70 for thyroid hormone to do its job.

Here's a post that will show you how levels are posted, and a great reply discussing testing levels and nutrients

healthunlocked.com/thyroidu...

[Trendywends in reply to Hidden]

Free T4 13 (11-27)

TSH 11.9 (0.3-5.0)

Ferritin 8 (13-300)

Anti-TPO 162 (0-34)

Have no idea as just new to all this and didn't know I could get print outs of results. These result were before treatment.

[shaws Administrator]

I, too, felt far worse on levothyroxine than before being diagnosed. Hopefully your body will soon adjust as it's not quite like taking a paracetamol. One dose of levothyroxine takes about 4 weeks to leave your system so we take one daily dose for life.

The initial dose is low and is gradually increased around every six weeks following a blood test. The test should be the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and the test and take afterwards. This helps to avoid the doctor adjusting the dose unnecessarily.

Always get a print-out of your results with the ranges (we are entitled by Law) and if you have a query you can post them.

If GP hasn't tested B12, Vit D, iron, ferritin and folate ask for these at the same time as your next blood test.

[Trendywends]

TSH 11.9

Free T4. 13

Ferritin 8

[Trendywends]

Also had another test done as not sure on family history and it came back Anti -TPO 162 and the range is 0-34

[SlowDragon Administrator]

High TPO antibodies means that you have Hashimotos or autoimmune thyroid disease

Hashimoto's often affects the gut, leading to low vitamins. As well as low ferritin you may well have low B12, folate and vitamin D. So very important to get these tested too as we can't use the thyroid hormones is these are too low

Hashimoto's is very likely to result in gluten intolerance too. A few of us are diagnosed coeliac, but most are "just" gluten intolerant

Your Doctor could test for coeliac but blood test is very unreliable and endoscopy requires 6 weeks high gluten intake first

Changing to a gluten free diet can help reduce symptoms and may slowly lower antibodies over time

Read as much as possible about Hashimoto's

The Thyroid Pharmacist website plus her video series Tge Thyroid Secret on YouTube are very informative

Amy Myers, Chris Kresser and scdlifestyle.com good too

[Trendywends in reply to SlowDragon]

Thank you all very overwhelming just now but explains a lot about how I've felt for a long time.

[Music1]

I know. You're not alone feeling this way. I was diagnosed and reluctantly (by my ivf clinic) put on just 25mg of Levothyroxine daily as my GP didn't want to do anything. I must say, I was expecting/ hoping to feel like I had more energy, feel better in myself, not so low/ depressed. However, I actually feel absolutely exhausted and worse than before. Initially I ached all over, even doing simple everyday things left me aching and heading back to bed. I have never felt that much fatigue. This sounds stupid, but I used to dread having to dry my hair (as it takes ages) and I felt really tierd after. I feel like my body is (possibly) only just starting to get used to this Levo and it's been nearly 3 weeks.

Just want to say, I hope your symptoms improve. You're in the right place asking for advise. There are some wonderful, well informed people on this site that are far more informed than GPs and other 'professionals' out there if you need advise or reassurance. Listen to your body. Sleep/ rest when you need to. Maybe try Gluten Free? What I thought was a 'food fad' actually has blown my mind away and I was feeling better just doing that before the Levo. Best wishes x

[Trendywends in reply to Music1]

Thank you. I'm glad it's not just me but yes I too have never felt fatigue like this before. I came home from work and sat down on a bench we have in our porch and couldn't get myself moved again. The pains in the joints and hands have been horrible and my knee locked in bed last night. I was on a high when I first got told as I thought yes this is why iv been so unwell feeling. Let's hope that through time as it seems to have been for everyone things settle down.

[Music1 in reply to Trendywends]

I know, it's daft isn't it. I was also thinking 'yes, they've finally worked out what it is and I can start to feel more normal'. I should be so lucky.

My joints have also really struggled - which is odd as I never usually have problems, just muscle aches and pains. Once I even thought "I'll just take a rest in the car and wait for my oh to get home". 1 hr later and I'd fallen asleep in the car outside shattered. Yes, let's hope things settle down for us both x

[Trendywends in reply to Music1]

You've just wrote exactly what I did today in the car. I said to my daughter mummy just needs a minute, half hour later she told me to wake up. It's crazy x