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?

Thanks @awaynboilyurheid I've actually had a coeliac test already and it came back negative, but I'm definitely considering trying gluten free soon as I've heard so much about it being helpful for Hashimoto's. Also good to know the palpitations can be caused by the thyroid.

Just got to hope the palpitations stay away until next week as I really don't want to go to A&E! To be honest I have a bit of a phobia of hospitals since having surgery earlier this year. So the thought of a long wait in A&E is terrifying to me. Ugh!

I will update next week when I see the GP again. Hopefully this time, I'll finally have that prescription in my hand!!

And the day has finally come! I have Levothyroxine in my possession! Hooray!

My GP was very cautious to prescribe since my issues with palpitations over Christmas. It took a clear ECG, a promise to keep a diary of any palpitations and go back in 2 weeks with it, and a promise I will go to A&E if I get any lasting 5+ mins, to get the prescription!!! You usually hear doctors being very blase about things, but mine is the opposite. Its nice he is very conscientious and caring but its made me a bit freaked out honestly.... Makes taking the medication feel very risky?!

Anyway, I'm excited to finally be on the path to getting better. Gonna take awhile but fingers crossed I'll get there.

I've got an appointment with the thyroid specialist tomorrow so it'll be interesting to hear her opinions too.

I got diagnosed with underactive thyroid a few months before being diagnosed as anaemic, so hard to say with some symptoms which were causing them.
I was physically tired - would be woken up and fall back to sleep repeatedly until I was fully awake, but at other times would be tired, but wide awake and not able to sleep. Emotionally tired/feeling down/anxious - had linked those to not being happy in the job I at the time - but it is easy to look back and see things differently. My skin was dry too and i had hair loss too ( but the hair loss improved and cleared up when i started taking iron tablets and the anaemia was sorted)

I was diagnosed about 15 years ago so things have changed over time. Had a number of years where I felt fine with very few symptoms and it as well manged.

As far as I am aware figures as to what is considered can vary depending on the lab and the tests used. For out GP TSH should be between around 0.75 and 4.5. I know mine should be at 2.5 for me to feel at my best. I will go for a long time without any changes being needed, then it will go randomly off kilter and a change in dose of 25 will change it too far the other way. It will swing back and fore a few times then settle back down again.

More recently I have I struggled with my emotions, my weight, tiredness but also not being able to sleep, brain fog and not being able to focus, I didn't have many headaches, but felt as if my head was fuzzy/a bit spaced out.

However, I am also now peri-menopausal so hard to pick out what is causing symptoms, but when my bloods done and my thyroxin dose was changed things started to improve.

@DaisyCat33 Aw that's great, so happy for you! Really hope you start to feel better very soon. Your doctor does sound cautious, and it's a bit daunting having him say all that. Hopefully he's just being careful though.

Because of this thread I've decided to get checked out in a few days too to rule it out or find out if I could have an underactive thyroid (it would explain a lot) so thank you 🙂

Hooray indeed! Your doctor however still hasn't connected the dots - being overtly hypothyroid affects your heart and can certainly give palpitations. You need to have thyroid hormone replacement to get rid of those, not avoid it!

Remember Levothyroxine is T4, just the storage form of the hormone. It isn't active as that form. Your body must convert it to T3 the active form. Let's hope your body does this efficiently. I was one of the unfortunate ones for whom Levo didn't do much. I am now on T3 only.

I suppose your dosage is very low (25 mcg??) That's just a starter dose and not really enough to do much at all. Most people end up at around 100 mcg or even more, depending on how far along the disease has progressed.

Good luck with the thyroid specialist, let us know how you get on.

So the specialist was fantastic. An absolute revelation!

She immediately increased my dose to 50, as she said 25 is inadequate. She also immediately agreed my palpitations are due to the thyroid. Explained each of my symptoms and why I'm feeling them.

Also discovered I have a vitamin D deficiency which has happened since September as it was fine then. So no wonder I've been feeling so rough!! Hypothyroidism and deficient in Vitamin D.

The specialist promised she would help me get well, which was wonderful to hear. She said if I need T3 later on we can discuss that too. I've started my Levo now so hopefully only up from here!

@DaisyCat33 I am rather jealous you have seen a thyroid specialist!

When people say they have dry skin, do they mean it's flaky or just like really tight? My skin doesn't look dry or flake but it just feels so painfully tight at times-I wonder if the moisturiser keeps it from flaking though. I absolutely dread washing my face everyday-it's getting so it's painful, I don't know what to do. I've always had dry skin but the last few years it's been worse and the last few months it's just horrible. Can't get tested soon enough now!

Makes taking the medication feel very risky?!

thyroxine is what your body naturally produces, as long as you don’t have to much thyroxine, it’s a replica drug so isn’t unsafe.

they’ll no doubt check your blood results after 8 weeks to check TSH again

Wow @DaisyCat33 that's amazing! There are so few thyroid specialists about, you have been exceptionally fortunate to find one! Hope you will feel back to normal soon!

I was a very mild case and only take 25 mcg of levothyroxine. In my case, it was affecting my fertility (making it difficult but not impossible to get pregnant). I had been TTC for close to a year at 36/37 without success, and the GP ran blood tests to investigate. It turns out that the week I got my blood test results was the same week I got my BFP, and I was put on levothyroxine immediately as poor thyroid function can be bad for the fetus. (I now have a perfectly healthy 2 year old).

I had no other symptoms beyond gaining a fairly small amount (2kg) that I simply couldn't shift in the year before I found out. I have always been slim and assumed it was just down to getting older.

I’m seeing a cardiologist next week about my very low heart rate, ectopic beats and palpitations. I have contacted my gp to get my last sets of thyroid bloods results and they are being really cagey about giving them to me! Last week I was told they’d been emailed, they didn’t arrive so I phoned again to be told they would never have said that because the policy is a doctor has to approve whether they can be issued and they have to be collected in person?! Why are they withholding my results? I have explained that I must have them by 23rd to take with me. I’m really hoping the cardiologist can help me as because I’m on the cusp of ‘subclinical’ the doctors keep fobbing me off. And I cannot seem to get an appointment with my own doctor to discuss any of this either. It’s so frustrating!

I’m feeling really low about it. Initially the HRT helped, and it has continued to help with the anxiety, however the palpitations, breathlessness, and tiredness is back in full force. I am determined to get an answer on this but they don’t make it easy do they?!

Your symptoms are likely due to your thyroid! Underactive thyroid causes low heart rate & palpitations. Lots of GPs don't seem to know this. The specialist I saw said it's super common and she has lots of patients with these issues.

I'm not sure whether a cardiologist would prescribe thyroid medication. You're right, they don't make it easy. It's taken me months of getting progressively more & more ill before I've finally managed to get medication. Why is it so difficult?!

It started for me straight after covid. I couldn’t get out of bed etc and thought it was long covid but asked for blood tests. My results were similar to yours and they didn’t want to treat. I said I wanted to so started on 25mcg. I’m now on 100mcg 3 days a week and 75mcg 4 days a week (absolutely ridiculous in my opinion, every other time I’ve asked for a dose change they’ve just put it up by 25mcg!). Heavy periods, dry skin, fatigue, brain fog, achey joints.

Your GP is legally obliged to provide you with a printout of your results! You have the right under the General Data Protection Regulations( GDPR) of 2018. Nor do you have to pay if they try to charge you for them.

https://www.nhs.uk/nhs-services/gps/view-your-gp-health-record/

Download the NHS app and your results will be on there.

Not necessarily not all practices have this bit enabled ours doesn't. You should definitely ask for a printout @thenewaveragebear1983 ours you ask at reception and they print it out there and then. I always get copies of my results. Sometimes the receptionists can be a bit funny about giving me my DC results but I just give them a hard stare and say I have a proxy thing enabled as my DC is too disabled to do it themselves and they hand them over.

@Decafflatteplease i downloaded the nhs app, I didn’t even know that existed! I my last tsh test was 2.7, previously it was 5.8. So they are now saying the result is normal.

what do I do now then? I have the same symptoms, with some getting worse… do we just wait until we feel so dreadful they eventually help us?

Was diagnosed with Hashimotos in my 30s as part of investigations for repeat miscarriage.
Never had any symptoms that i could discern. I am approaching 50, likely peri menopausal. Only thing, i have been totally unable to lose weight. Did 2 months of dietician supervised diet. Lot3 lbs and then stuck there.

Recently discovered i have been under medicated for quite some time and now on 150mg thyroxine. Have already lost a bit of weight so hoping this will get the lard off. I

Anyone taking Levothyroxine - how long before you started to feel human again?

3 weeks and I felt a bit better.
3 months and I feel ten years younger!

3 weeks! I am so achey and crap feeling. Fingers crossed!

Sadly I do know some folks who have had to endure feeling dreadful for many years without getting treatment, despite their best efforts to get it. Hypothyroidism treatment is broken, it really is. Even if you feel truly dreadful, if your results are still 'in range' (a very wide range that is unfit for purpose) then it's more likely you'll be offered anti-depressants or other meds to treat your symptoms.

I was told it could take 6 weeks or longer by my doctor...

Eek!😧