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 am actually totally confused reading these comments , I see some people saying their TSH is 90+ , my TSH is 6.49 and T4 is 10.02 , I have been advised to take levothyroxine but as of yet have not taken, I do feel tired but have put that down to menopause and I am always cold but seeing some peoples readings on here my TSH at 6.49 doesn't seem that bad. I have found it hard to find what a normal TSH and T4 should be

I've been taking Levothyroxine for 3 years but looking back can see I was symptomatic for at least 18 months before I was diagnosed. I don't think my symptoms were as severe as some mentioned here but I had general lethargy and inertia, a loss of interest in things I had previously enjoyed and quite flat in mood. It crept up on me. I had some weird stuff like frequent headache, intensly itchy scalp and occasional pins and needles in my feet that all went away after I started treatment and got my dose right.
As soon as my TSH goes above 2 I can tell. I get really tired (like hitting a brick wall) and a real feeling of inertia and low mood.

In alll honesty I'm afraid for me it was about 2 years. But that's because I had an ongoing battle with the GP during lockdown - I had to actually email a screen shot of the guidelines for treatment as they kept insisting that a 'normal' range for TSH for someone who is being treated for hypothyroidism is the same as for someone who isn't (which isn't true - the recommended target range for TSH for treated hypothyroidism is much lower). It was really quite exhausting getting it sorted out properly. I was lucky enough to eventually find a really good GP who knew what she was talking about and after she increased my dose I felt better within about 3 months.

Some people have very high TSH yes, that just means they have very severe hypothyroidism. You should be taking medication with those levels. They're not 'severe', but they show your thyroid is failing. Mine are similar to yours. Optimal TSH is below 2.5, with T4 in the mid/upper section of the reference range.

Untreated hypothyroidism is only likely to get worse as time goes on. It puts you at risk of a variety of things - heart disease, vitamin deficiencies, mental health issues.

Thing is, everyone is different. Some folks feel absolutely dreadful with a TSH of 4 (I'm one of them) yet others end up with those astronomically high TSH values and yet don't feel worse than I did. Normal TSH should be around 1.0. The 'normal range' was made up from TSH values from people of all ages. Often as people become elderly their TSH rises. Those values being included skews the normal range. Also the TSH values of people with undiagnosed hypothyroidism. Hence the 'normal range' goes far too high!

FT4 is just the storage hormone. It can't tell you how much active thyroid hormone you have, you will only know that from measuring FT3. But mostly this isn't measured. The labs work like this: 1. Measure TSH, if in the normal range, that's it, don't test anything else, patient is normal. 2. If TSH is outside the range, measure FT4. If FT4 is in the normal range, that's it, don't measure FT3. FT3 is only measured if the other two parameters are outside their normal range. On paper, this sounds like a good method, but it pre-supposes that everyone is identical. For example, some folks TSH doesn't rise with hypothroidism. That can be for a number of reasons.

Your own TSH and FT4 tell me you are likely hypothyroid, given your symptoms.

Has anyone had Thyroid Peroxidase Ab measured?

And do you pay for thyroid medication? I had it in my mind that you don’t but they charged me!

No - it’s free as is all your other medication for life.

Really? I picked up my prescription at the hospital pharmacy and they charged me!

It should be free and all your medication should be free. I use pharmacy2u and it’s delivered free of charge too.

Freezing cold. Although my blood tests are fine now I’m on 25mg of medicine, I’m still freezing.

You need to apply for an exemption card, but yeah, for underactive thyroid all your prescriptions will be free.

Yep, as well as Thyroglobulin antibodies - both need to be measured as you may be normal for one but raised for the other, or both (as I was - I had both in the 100s).

@RufusthefIoraImissingreindeer Don't know if you got your levels sorted but I've learned a suppressed TSH like 0.1 is bad news. I can feel amazing for a bit but then I crash and feel worse than ever. Good luck.

Thank you

its been that level for years now. I feel ok but having seen some of the posts on here maybe I would feel much better with the right levels

Can I ask if anyone else has horrible side effects from medication?

Mine gives me horrible tummy pains when I take them, and most foods seem to give be painful bloating (like I’ve eaten a basketball). I’ve gone off food but my bloody weight is still stupidly high.

I've had some bloating since starting the meds 2 weeks ago, however I have long term stomach issues so I feel it's more likely just a flare up for me.

Are you lactose intolerant? Apparently levothyroxine contains lactose.

It definitely happens to some folk. Either because they are lactose intolerant or because they are reacting to the acacia that some brands contain. You may need to switch brands, OP.

I eat tonnes of cheese does that count (since it’s processed?) with no ill effect. Sugar is worse than usual - I am usually careful of sweets as too much sugar jags my sugar levels but now I feel like I’m swelling up like a balloon if I eat something sweet.

@HoneyButterPopcorn I've never had issues taking levothyroxine and for sure wheat and lactose don't much like me. I feel much better limiting things like cheese, wheat and sugar, milk, cream and other rich dairy fats. When I do that, my weight corrects.

If you are diagnosed as hypothyroid you are entitled to and NHS exemption certificate for ALL prescriptions. I think it's bizarre. Whilst I can see that thyroid medication should be free, I don't see why people shouldn't be charged for: antibiotics, HRT, painkillers, etc. The other absurdity is the blanket free prescriptions once people are over 60. DH and I both are and both still working full-time. Our incomes are high and the mortgage is paid off. There are people who are far more deserving of help.

could possibly be candida overgrowth if you're reacting to sugar like t hat, that's common with hypothyroidism too.
I've had to argue with pharmacists a lot about whether different brands are different (they are, they have different codes on them, Eltroxin and MercuryPharma Levothyroxine are the only ones that are identical to each other that I've found)

Barely any lactose in cheese, but maybe you are reacting to sugar alcohols in foods - they're used a lot in many foods as sweeteners that replace sucrose, but some folks can't digest them and they cause a lot of problems. You might need to read labels very carefully, look for things like sorbitol, mannitol, xylitol, maltitol...the list goes on. Depends how much processed food you are eating as they are almost exclusively in those, not home-cooked stuff.

Also just sugar, too much is not good!!

@RosesAndHellebores

The exemption which applies (in England) to quite a few different conditions is an interesting one, I hadn’t realised before pharmacy pointed it out to me!
And many of us have to pay for T3 on private prescription anyway, be better if we could just pay a few pounds retail price over the counter like in some countries. Also have to pay for private blood tests for FT3 and vitamin levels, decent vitamins and supplements, ultrasound scan and private endocrinologist - all difficult to get on NHS with hypothyroidism and it all mounts up.

@Panackelty well made points in relation to what the NHS doesn't provide. Indeed I saw an endocrinologist to make sure everything was accurately titrated in the autumn after some NHS investigations. The NHS wouldn't have done that.

Perhaps we need to change our views and accept the NHS deals with disease and critical issues but not holistic overall wellbeing.

@RosesAndHellebores
Yes, I think you’re right and ‘free’ seems to get abused by some people. Though I don’t think we could ever build up a stock of unused thyroid meds without difficulty with 28 days at a time, but I remember people with drawer fulls of ‘free’ asthma and eczema stuff when I was at school that just got thrown out.