Tell me your underactive thyroid symptoms?

[DaisyCat33]

So I have recently been diagnosed with "mild" hypothyroidism, or underactive thyroid. My GP wants to test again in a few weeks to make sure the results are the same. If they are he is willing to prescribe levothyroxine at that point.

My symptoms are dreadful. I'm very unwell and have been for awhile. Extreme tiredness/sleepiness (12-14 hours sleep a day), tired all day, brain fog, drunk feeling, dizziness, hair loss, depression, anxiety, joint pain, long periods, the list goes on... I'm off work and struggling to even leave the house.

My GP seems surprised I'm so ill based on my results, which are:

TSH 6.22 (ref 0.7 - 4.78)
FT4 11.2 (11.5 - 22.7)

I feel like a hypochondriac because GP keeps saying I should have "mild or no" symptoms with these levels... even though it IS hypothyroidism!?

Am I being crazy here? Can you tell me your symptoms if you have this too? And what were your levels at diagnosis?

Dry skin, tired all the time, actually exhaustion (sleeping 14 hours a day). Constipation, brittle hair, weight gain (lots over 2 years).

I was told I was approaching the menopause for 2 years by my GP. Eventually a nurse suggested a thyroid test. My TSH was 19.8. I now take 150mcg Levothyroxine and sleep only 8 hours a day!

The gold standard for TSH is actually around 2, so you definitely need medication, even just a low dose. Speak to a different GP and demand a retest. Some GP's won't prescribe until you have had several blood tests because the levels can fluctuate.

@Mygosh My recent TSh results were 3,4, is that good or bad?

Anything below 4 is considered normal by GPs. Privately, I was told the best is around 2 but not essential to medicate unless you have symptoms.

So my consultant is saying I have Hashimotos. Is this something I need to worry about?

Hashimoto's means your hypothyroidism is autoimmune in nature. Most people's is caused by Hashimoto's - mine is! My antibodies are off the charts.

Not much you can do about it, the treatment is the same. So no, nothing to worry about really. Just means you now know you have an autoimmune disease.

What does that mean though? Tried googling it but there is so much crap online! Does that mean I am more susceptible to catching bugs?

It means your body is attacking itself. It will not mean your body gets more bugs, but it will mean your more likely to get other autoimmune diseases. Woman are more likely than men to have autoimmune diseases

No it doesn't mean that. It just means your immune system is attacking your thyroid and damaging it. It doesn't mean you have a weak immune system.

soo after 5 months of medication I finally had new blood tests. TSH has come down from 141 to 13?? Does this mean my medication is working but not enough! Phone call with GP on Tuesday!

141?!!!! How were you still standing? My tsh was about 35 when I was diagnosed and I felt like death.

Anyway, yes, I’d guess you might need a higher dose. Rubbish that they started you on thyroxine and didn’t repeat bloods for 5 months though - I’m sure it’s meant to be more like every 8 weeks until you’re in range. What dose are you currently on?

I had an asshole of a hp who insisted I had PND not thyroid. Eventually I went to hospital for heart palpitations and they took one look at me and kept me in. I had a TSH of over 100 and 0 T4.

Since then I have gone up to 350mg of T4 and 30mg of T3 per day. I keep my TSH surpressed at 0 or I am unwell.

I have Hashimotos and when I have an antibody flare up I can still feel awful.

At diagnosis I had lost all body hair, including eyebrows and eyelashes, had cracked bleeding skin, memory loss, palpitations, was slurring words, even hallucinating. The tiredness was intense.

I'm afraid to say my hair never really came back brilliantly. I have zero libido still, as well. But the other symptoms retreated although i'm still not the person I was before it.

I genuinely believe that if men got this it would be a much better treated disease.

Absolutely!! Makes me so angry. Sorry you had such a rough time with it.

It’s so bad isn’t it? I requested it 4 times… Glad I’ve had them done now, I’m on 100 but it seems like I need more? T4 is now in range tho.

I had my second baby 5 months before I was diagnosed and I just thought I was newborn tired :(

Hi @DaisyCat33
how are you doing now?
I hope you’re feeling better

Remember to keep getting your bloods checked and meds adjusted where necessary.

Just to say it is worth having a coeliac blood test too for anyone still feeling very tired. It is often recommended to go gluten free if you have Hashimoto's even if not coeliac.

Op same boat as you and again repeating bloods in 8 weeks he was overloading me with info on the phone I just couldn’t grasp it he was saying something about 5.4 should be lower I’m like huh I’m not a doctor .. reason had the bloods as thought was in menopause ! But he’s just focusing on this now weird

The symptoms we feel in perimenopause are very similar to hyperthyroidism, I have both and it's a careful job identifying which to focus on when.

Do you have the NHS app or a GP app? That should show you your test results. It sounds like he's talking about TSH which at 5.4 is out of range.

Hopefully he'll send you for a full thyroid panel which should be done as early as possible in the day (9am or earlier) on an empty stomach. That gives the highest reading of the day.

Have a read about hyperthyroidism, systems can include

Anxiety
Depression
Weight gain
Exhaustion
Feeling cold
Aching muscles
Joint pain
I'm sure there are more

I hope you get towards treatment to help

You were right . Was called today with results and he mentioned under active thyroid and test to be repeated in 8 weeks as slightly above what should be I’m so confused he was talking so fast

Hopefully when they do the test in 8 weeks they'll do a full thyroid panel. Normally they only start treatment for thyroid when TSH goes over 10. But if you have 2 out of range readings and a positive test for antibodies then they can start treatment sooner if you have symptoms.

Being on levothyroxine has made a huge difference

@phlebasconsidered I thought heart palpitations were what you got with overactive not underactive? Sounds so rough what you've been through! Do you have any idea how long you'd had it before diagnosis for it to get that bad?

Does anyone know how biotin affects test results? I was taking a multivitamin with it in and my TSH level was borderline for medication so I've been prescribed levothyroxine. I've since found out biotin can affect test results. Although I was told I have autoimmune hypothyroidism so I assume there is no possible doubt with the test results?

I had to read up on thos before , I was taking biotin . It makes your levels appear better than they are so you should stop taking it a few days before bloods are done. I was taking just biotin though not a multivitamin so the strength was probably higher than the biotin in a multivitamin.

@Member984815 Ah that's interesting thank you. I just checked my vitamin box and it said 105 micrograms of biotin, which is a fair amount I think. So my TSH levels might actually be higher then because of the biotin affecting it-shoot I was hoping it was the opposite and my levels were actually lower in reality! I'll make sure to stop taking it shortly before my next blood test.