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?

I’m lucky that I have a consultant at the hospital who keeps an eye on me.

Last blood check I had the surgery pharmacist suggested that because my thyroid was ‘in range’ (barely) I might want to stop taking the meds… she was also sketchy on vitamin D and what it does in the body (she googled it).

Hmmmm just been looking at my results on the patient knows best website.

T4 is 8. That’s too low… they also said my blood was ok when my vitamin D was 13 (consultant called me to check they’d put me on vitamin D - oopsy they didn’t see that result). I despair sometimes.

I had - depression, lethargy, exhaustion, aches in joints and muscles, forgetfulness, dizziness, palpitations, sore skin patches, fuzzy vision, confusion (couldn’t remember basic things like there Bath is or words). Also exhausted - but insomniac. Oh and stomach pains, bloating, lack of interest in food (and I’m a greedy bugger who loves food).

now I’m on meds it’s slowly getting better - still tired and stiff, not so interested in food (and lots give me stomach ache/make me feel woozy) - and I find that I really suffer if I have a drink (which probably isn’t a bad thing).

oh it really sucks! Well it’s better than other things it could have been I guess.

Yes

how do you manage to get out of bed each day? Seriously that’s really high. Mine at around 6 renders me useless

Following.

The weird thing is it was picked up during blood tests for something else. But now a lot of my symptoms make sense! I just don’t understand how 11 can be so bad for most people but the GP and hospital consultant I saw weren’t like omg 141!?

Anyway am on medication now so fingers crossed.

I was being checked out for ‘wimmin of a certain age issues’ and luckily my doctor (‘try therapy and camomile tea’) referred me to a hospital gynae consultant who said ‘this is classic thyroid’.

@HoneyButterPopcorn

makes you wonder why the doctor didn't pick up the "classic" thyroid issues and it wasn't until you got to the gynae that it was picked up? With many thousands of woman having issues with thyroid (second most used medication in uk and 80% female issues) why hadn't the first doctor spotted this?

My doctor is a bit - well a bit of a flake. I had whoooing cough and she told me to try camomile tea.

She was adamant that my thyroid symptoms were menopause (without asking when my last period was!). luckily she is good at sending me patients to specialist so in both cases I trotted off the hospital to see specialists.

last blood test I had to check my thyroid and vitamin D (I had been in a course of really high dose VitD because my levels were so low they said that the clinic pharmacist would call with the results.

She told me that because both levels were ‘in range’ (right at the bottom end of range) I could stop taking both. Now I’m no vet but ffs!

I’m still on baby dose of thyroxine (she said to wait another month for checks) and taking maintenance vitamin D, but I’m in a lot of pain now and really really f*cked off.

Can I ask - I get horrible pains in my thighs at night often (wakes me up) and am stiff when I get up (ankles especially). Last Saturday I had pins thighs and ankles all day.

is this thyroid or vit. D?

Hi - could be either! However low vitamin D is often associated with painful joints/muscles.

What is your vit D level, do you know?

Hi, An update for anyone interested - I haven't posted for ages. Last time I posted I think I was about 2 weeks into levothyroxine.

Well it didn't agree with me. I crashed hard after about 2 weeks and felt worse than I'd ever felt. I was bedbound. I stuck it out for 8 weeks but I've never felt so ill.

I got an urgent appointment with my private doctor, who - having looked at my blood results - decided levothyroxine was not right for me and started me on Armour (NDT)

I'm now 6 weeks into Armour, and have increased my dose by a fair amount up to 2 grains. So far it's much better than Levo and I've had improvements in some symptoms, but I'm still very tired a lot.

My doctor also tested my cortisol levels by saliva test. Very eye opening! Mine are shockingly low. This is something NHS doctors don't test, but according to my private doctor cortisol often becomes low in hypothyroid/Hashimoto's patients. It is called "HPA axis dysfunction". It is often the reason hypo patients have continued fatigue despite medication.

I've been advised that it could take many months/even years to rectify this. I'm on a long journey of recovery. Hypothyroidism is just NOT as easily treated in some people as many doctors make you believe!

Have you been tested for Addisons?

So I chatting to a colleague about it (he teaches diagnostics and pharmacology something or other) and he says it sounds like side effects of the medication). Bugger that! Worse when I have alcohol (I’ve noticed my muscles hurt for about 2-3 days afterwards).

Vit D levels are the lowest in the range of ‘ok’ after being on elephant doze for 6 weeks (I’m on a maintenance doze now).

Glad you're getting sorted.

You're absolutely right - the majority of GPs and to be honest most of the NHS endocrinologists as well don't really have a clue about thyroid disease. As long as they numbers look good on paper, they're not interested in your symptoms or how you feel.

Like you, I felt awful on levothyroxine. Pretty much bedbound, zombie like etc. I went from a starting dose of 25mcg right up to 150mcg over about 18 months, and felt dreadful at every stage.

I had to research and learn (and mostly did this via the Health Unlocked forum which is fantastic), and it was only when I started adding in self sourced T3 liothyronine) that I started to feel a bit better.

I'm now a few years down the line, on T3 only at a high dose (some prescribed by the NHS and I self source the rest to top up as my endocrinologist won't increase my prescription above 60mcg) and still trying to get rid of persistent symptoms. I'll be honest, it's a hard slog.

Anyway, hope you do well on Armour. Just out of interest, how much does it cost you? I've never really investigated NDT, went straight to T3. I did do a cortisol test recently and showed my levels are fine, and all my vitamins are in a great place.

Bumping.

I thought I was settled on 125 thyroxine but the last couple of weeks I've started feeling rubbish again, so tired, last night I slept for 10 hours and I'm still tired, I feel the weight in my chest that I always get when my thyroid is playing up. My limbs ache, all my usual symptoms.

I can't get an appointment with a doctor to request a blood test until the end of the month, and then it's usually around 3 weeks wait for a blood test it's rubbish.

I'm on high strength vit d daily also.

Why won't my thyroid settle 😔 it's good for. A few months then has a wobble again. I feel the best when it's around 1 even though the range is up to 5.

Can I ask if you're perimenopausal?

I was when I was diagnosed with hypothyroidism and after 18 months of blood tests/dosage tweaks, I settled on 100mg of Levothyroxine a day.

However, the tiredness and brain fog didn't go away until I got HRT. Now it's really not too bad.

Me @WonderfulUsername ?

Possibly, I'm a bit young for normal peri but lost an ovary a few years ago due to suspected cancer (not cancer in the end)

I've been having night sweats recently and had some blood tests for perimenopause but they were all fine but they said to repeat in 6 weeks as sometimes the first lot shows up fine or something. Maybe I'll ask for them to be down at same time as thyroid bloods

Sorry for the major delay in response! I've had a bit of a "crash" recently with my symptoms. This seems to be happening to me every time I need a dose increase, but sadly can't see my doctor for another 5 weeks as we need to wait to do accurate blood tests.

NDT is quite expensive. I'm on 2 tablets a day and it costs me £1.30 per tablet. So currently £2.60 per day.

I'm struggling a bit with NDT to be honest. My main, and most debilitating symptom, is constant sleepiness. I'm always foggy headed and feel like I want to fall asleep, no matter how much sleep I've had 😴 the only time it lifts is very late at night, strangely! I feel most awake after midnight. Completely backwards to how it should be. I think my cortisol levels are to blame.

My doctor said if after 3-6 months on NDT, with optimal bloods, I'm still feeling unwell - we will try T3 only. I think that might end up being the path I need as T3 only is recommended for recovering low cortisol levels.

@DaisyCat33 are you paying privately for meds? As people with thyroid issues get prescriptions for free.

I'm not sure you can even get NDT prescribed on the NHS these days. It's hard enough getting T3 prescribed - I'm one of the lucky ones that does.

I had my whole thyriod removed 2 years ago. I had a goiter the size of an orange on both sides! Now on Levothyroxin but they are still struggling to get my dosage right. Levels in March:
TSH: 0.04
T4: 33.3.

I haven't felt right the whole 2 years. Seriously regretting getting a total thyroidectomy! I've had to leave work as I couldn't function as an adult. Have all symptoms same as you 100% feel your pain.

not something to do until your dose has stabilised so you know what to get for easy division and obvs confirm it's ok with your doctor, but armour tablets get larger as they go higher dose which makes them really easy to break or cut with a pill cutter (you can get them from most chemists) so for example it's pretty easy to break a 2 or 3 grain into 2 or 4 pieces, which makes it work out a LOT cheaper.

illustration using rough figures from the pharmacy I use:

100 x 0.5 grain is £150
100 x 2 grain is £270 which would give you 400 x 0.5 grains at under £70 for 100.
so if cost is an issue that might help.

Not NDT unfortunately! You can't get NDT prescribed on NHS. I'm in Wales anyway so NHS prescriptions are free here regardless. But I was only offered levothyroxine on NHS and it didn't work for me.

Sorry to hear this! It's extremely common sadly. Some people take levothyroxine and feel perfectly fine. But a large percentage of thyroid patients struggle with symptoms long term!

T3 is needed for a lot of people but the NHS keeps saying it's not necessary... Load of rubbish

So my doctor doubled my dose and for a few weeks I was taking two pills to finish a prescription before getting a new prescription with the higher dose.

I now like curling up in a ball and crying and as if I’ve been on a three day bender. I don’t think it’s the same ‘make’.

What the hell is going on?