Feeling awful: Hi I was diagnosed with... - Thyroid UK

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Feeling awful

Sweenco profile image
17 Replies

Hi

I was diagnosed with hashimotos 2 weeks ago and have been on 50 of levothyroxine for 4 days,I’ve been feeling awful for 5 weeks but had symptoms for years,anyway I’ve got a few questions is it normal to feel this bad my tsh was 11.5 when diagnosed my main symptoms:

Generally feeling off

Not able to look forward to anything

Easily irritated

Stomach bloating,wind etc

Tinnitus

Can’t be bothered doing anything

Muscle aches back hips legs mostly but all over

Headaches

Feeling weak

Blurred vision/eye floaters

Feel my food digesting at night

No concentration

Ibs type problems

I always wake up at 5/6am and can never get back to sleep

Reduced appetite

Joints and bones constantly crack

Forgetfulness/foggy head

There’s probs more.....long list 😂

Just generally feel like crap 😢

Also which supplements are best to help me feel better?.

Thanks

James

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Sweenco profile image
Sweenco
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17 Replies
greygoose profile image
greygoose

With a TSH of 11.5, most people would feel pretty dire, yes. But, TSH level doesn't necessarily correspond to the way you feel. Some people can feel like death-warmed-up with a TSH of 2. Others feel fine with a TSH of 100. We're all different and all feel things differently. But, let's just say, it doesn't surprise me that you have all those symptoms with your high TSH. :)

Sweenco profile image
Sweenco in reply to greygoose

Thanks 👍

I’m totally climbing the walls here been off wirk for 4 weeks and starting to feel like I won’t get better. I go on holiday in 3 weeks and I can’t even look forward to it.

Hopefully see some improvement before then fingers crossed .

greygoose profile image
greygoose in reply to Sweenco

You might feel a tiny bit better in three weeks, as the levo kicks in. Fingers crossed, anyway.

When did your doctor tell you to go back for a retest?

Sweenco profile image
Sweenco in reply to greygoose

4/6 weeks.

I’ve ordered selenium tablets and vitamin D tablets do you think these will help?

Jeppy profile image
Jeppy in reply to Sweenco

Hi. I felt complete "pants" (sorry for pants) for years, I came here and then found I had very low b12 and D, these two things immediately helped a bit, then I set to work on what I learned (here and kind members privately) and bit by bit you do get improvements, better days etc, Thanks so much for HERE 🙏🏻

......there is big correlation with health and Gut health, that's a buggy for all, hypo or not, and then to ensure you don't have candida going on ( yeast overgrowth, easily treated nor expensive ) these two things are BIG. And of course then the adrenal health is so important.

Know it all sounds bewildering maybe. But you are in the right place and you will feel better and get better. It's true, some of us have been ill for many years, some are luckier and got help sooner,

Lots of good wishes and it's just a case of a bit at a time and patience. xxx🦋

Jeppy profile image
Jeppy in reply to Jeppy

...you WILL feel better. 😊🌸

Sweenco profile image
Sweenco in reply to Jeppy

Hey

Thanks for the reply,don’t worry ‘PANTS’ describes it perfectly 😂

Ive only been on treatment for 4 days and just want to feel better just no interest in anything sort of disconnected like I’m on a different planet it’s hard to explain.

James

cjrsquared profile image
cjrsquared in reply to Sweenco

You will feel better but sadly your body has been under stress and your thyroid struggling for a long time. It takes 6 weeks for levels of levothyroxine to stabilise, hence no blood test for 6 weeks and then most likely your levothyroxine will be increased, on average it takes 6 months to reach optimum levels. Don’t let your gp fob you off with TSH is ‘in range’ most people feel better when TSH is around 1.

It would be worth searching hashimoto’s on this site, there is a lot of great advice. Please be patient, I know it is hard.

Jeppy profile image
Jeppy in reply to Sweenco

Hi again, well really no need to explain anything!🙃🙈. I think most of could agree with that, and yes, hard to explain to say family or even Doctor at times. - I began to feel fruitcake lol

YOU ARe SO NOT ALONE

Jeppy from planet 🤖

On serious note those are very regular feelings. But it really will be temporary, if can, try not to analyse it much, it needs to settle in too and give a bit of time

shaws profile image
shawsAdministrator in reply to Sweenco

It has taken years for us to gradually become hypo, so it is a while before we can get the hormones back to a level which enable our metabolism to work in sync again. When it does everything looks and feels much better.

SlowDragon profile image
SlowDragonAdministrator in reply to Sweenco

Always recommended to test your vitamin levels first.

Ask GP to test vitamin D, folate, ferritin and B12

Post results and ranges when you have them

greygoose profile image
greygoose in reply to Sweenco

Did you have your vit D tested? You shouldn't take vit d without knowing your level, first. But you can take selenium.

Leave the test till six weeks after you started levo. Make your appointment for as early in the morning as possible - at least before 9 am - and fast over-night. Leave a 24 hour gap between your last dose of levo and the blood draw. :)

Sweenco profile image
Sweenco in reply to greygoose

Yeah I was just thinking I should really get the results of all my bloods printed out. When I had my bloods tested a few weeks ago they originally wanted my thyroid retested in 4 months as in my doctors words I was borderline BORDERLINE 11.5 I also found out that it was 5.6 the last bloods I had taken 6 months before when I was also ill. So if he thought my thyroid was borderline what else hasn’t he told me reguarding my other tests?.

It’s funny now I think about it when I originally phoned for my results I was told apart from the thyroid retest that there was something in my b12 result but when I asked the doctor he just dismissed this.....I wonder 🙄

greygoose profile image
greygoose in reply to Sweenco

Three things : doctors have little understanding of thyroid; doctors have no understanding of nutrients; doctors do not understand the 'subtilities' of reading blood test results. Put those three together, and you end up with the mess we're all in!

Sweenco profile image
Sweenco in reply to greygoose

Before I was diagnosed Hashi I actually looked at the symptoms of B12 deficiency and I can relate to a lot of those symptoms aswell so I might explore the chance that’s it’s low aswell.

greygoose profile image
greygoose in reply to Sweenco

Yes, I definitely think you should follow that up. Low B12 symptoms can imitate low thyroid symptoms. And low B12 is extremely serious. But doctors tend to think it's 'just a vitamin'! One doctor actually said that to me! :(

Peanut31 profile image
Peanut31

Hi Sweenco

My TSH was 12.2 when I was diagnosed (March this year) and I felt like a zombie.

I had been diagnosed with Hashimoto’s by a private Endocrinologist, but he said no medication (thyroid) would help.

I gradually got worse with his refusal of medication.

I went to my surgery only to be told by a GP it was anxiety, so I went months without medical help.

Anyway my hubby took me to see another GP a few months later, I saw my allocated GP within the same surgery and he ordered bloods, within a few days the surgery was phoning me to see that GP, he started me immediately on 50mcg of Levothyroxine. As everything thyroid was out of range.

My symptoms were, stiffness in my neck and muscles, hair loss, weight unstable, freezing cold all the time and as if my feet were constantly in buckets of ice cold water, brain fog, emotional, no zest for life, I almost became a recluse.

Tired all the time, dry skin, big bags under my eyes.

I went gluten free back in September 17 to help try and improve my Hashimoto’s symptoms, as I suffered horrendous bloating, morning noon and night, and this has disappeared.

I’m also dairy free now as I made a connection that anything dairy it would cause muscle stiffness in my hands/fingers and feet.

It takes a while for Levothyroxine to start working, some feel worse before they start to feel better. Your body has to get use it.

One thing you must keep telling yourself is YOU WILL GET BETTER.

You do need to educate yourself on this thyroid business, so do as much research as possible.

The only person that can help you, is yourself, don’t take what the GP tells you as gospel, don’t be fobbed off, your the one feeling like a bag of rusty nails not him/her, if he/she doesn’t like the fact your educating yourself on your condition that there problem not yours.

I’m now on 100mcg of Levothyroxine with another 6 weekly blood test due in July. I’ve learnt it does take time, you have to give it time, one day you feel your finally getting better than the next day you feel like you’re took a step back.

Make sure you book blood tests every 6 weeks, and the GP increases your dosage by 25mcg each time, don’t leave it any longer than 6 weeks.

Always book blood tests first thing in the morning. I book them for 8-8.30am, don’t take Levothyroxine that morning and only drink water, no eating.

As you increase your dosage you will notice a pattern that the nearer you get to the 6 weeks your body needs that increase.

My TSH is now 1.6 so it’s improving, but I’ve still got some symptoms, so until they disappear and my TSH is 1 or below I will continue to increase my Levothyroxine.

If the GP refuses, as most are obsessed with the ranges, especially TSH, and not how the patient is actually feeling, then I shall not hesitate to start self medicating on NDT.

However, it’s still early days for you to even think about that, as it is for me.

You may feel better on holiday as you can relax (hopefully). Stress is a big no no for thyroid patients. Get yourself some thyroid/ Hashimoto’s book to read on holiday, this is what I did.

As others have mentioned vitamins also play an important role, vitamin D, B12, iron and ferritin.

Mine were very low, but I’ve managed to get them up, I would suggest having vitamins tested.

Take selenium 200mcg daily this will help as well.

Always got copies of your blood results (official lab ones) I registered to access my results on line so I can see them including ranges.

Lots of people are fobbed off by the receptionist/GP saying they are in range, perhaps NHS range, but, not the range to feel well.

People advised me that in order to feel ‘normal’ TSH should be 1 or below, T3 5-5.5 & T4 19 or 20.

Another issue you may experience when having your blood tests they may only ask that your TSH is tested, that’s no good you need all three testing. TSH, T3 & T4 to see the whole thyroid picture.

My last blood test I had an argument with the nurse as she was only going to request that the lab tested my TSH, anyway I was panicking and I basically bamboozled her with my thyroid knowledge, to shut me up she said all three would be tested and they did.

I mentioned this to my GP and he has now provided me with a blood sheet request.

I’ve printed a few off so I have them for further tests.

Good luck and Best wishes

Peanut31

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