Hypothyroidism- please share what has helped you.

[NormasArse]

Hi, I’ve just been diagnosed with an under active thyroid, but I’m wavering about taking thyroxine because it’s a lifelong thing.

I do feel crappy all of the time. I sleep more than I’m awake, and after a day at work, I’m often too tired to drive straight away, and need a nap in the car first.

My neck feels constricted and I have all over body pain. I’m also concerned about the rise in my cholesterol.

When I’m not working, I try to walk and swim every day (some days are a write off though).

Alcohol is a complete no now- it makes me really tired, and often sick. That’s not a problem though- I can live without it easily- it’s just showing that something has shifted within me.

My concern is- what if it were suddenly become unavailable, or we moved away from the NHS?

Is there a natural way to get my thyroid to work properly again? Or at least something that means my dose would be minimal?

TIA.

When you get the repeat blood tests on the NHS is it strictly for thyroid only or will they check other things as well? Because I could really do with checking my iron, vitamin D and B12 as well but the private tests are like £100 per test 😬
I did get everything tested last year and all was fine (except thyroid obviously!) when I was first diagnosed but could do with rechecking as I've stopped taking my multivitamin since then and I have no idea how long it takes to develop a deficiency.

Ive had this condition since the late 90s. Twice a year I have to have a blood test to monitor the condition and to make sure Im on the correct strength of thyroxine. The symptoms you have mentioned - tiredness, muscular aches, depression - are classic ones. Once you begin the thyroxine it will take a few weeks before the effects begin to kick in but you should gradually begin to feel better.

I’m on 100mcg, TSH is 4-5, don’t feel any different from when I was diagnosed and they won’t increase my levo as apparently my TSH is now “fine”
ok then still tired, fat, losing eyebrows and skin dry and flaky and I’m cold

Have you looked into the vitamins and minerals that help? I believe that’s quite important too.

no that’s not fine. Ask to see a different gp and then referral to endo who will tell them to get you at least below 2 if not around 1-0.5

if you’re still struggling join the BTF and speak to their helpline for further advice

I’ve changed doctors once already over it. Was advised by immunology I needed an endo referral but that’s been refused as “should be dealt within primary care”

When I get the message about booking my thyroid blood tests, I usually contact the surgery to ask if they will do B12, D, folate and ferritin. To be fair to them, they've always done this when I've asked for it.

I also always have to remind them to request T3 as well. Especially important seeing as I'm on T3 only medication. Most years I get a panicked phoned call following my blood test result as my results are unusual due to the fact I'm on T3 only - massively suppressed TSH, under the range for T4, and high (and sometimes above) in range for T3. I then have to explain to the GP why my blood test results are like that - you think it would be obvious to them seeing as though they prescribe my T3, but no!

She was lovely. I sent her a couple of boxes of T3 once - I'd gone to Corfu for a long weekend and you can buy liothyronine over the counter in Greece without a prescription. I'd managed 25 boxes by going round all the different pharmacies! 😂

This was before I got it on the NHS.

I’m continuing to find this thread so useful. The latest bit of interesting info is that contrary to what others have experience my GP has refused to test my T3 and vitamin D. I’ve asked several times. I think my medication level is ok for now based on improvement in symptoms but I think I’ll need to go private if I feel like the levo isn’t being effective anymore.

I saw on another thread the other day something about levo being some sort of contra indication for bone density/osteoporosis which I didn’t know

Yes if you are taking too much it depletes the bones.

This thread is very helpful. I’ve been on Levothyroxine since 2022 having had insomnia, muscle aches, feeling cold, thinning eyebrows, depression high cholesterol and weight gain. Also early menopause and hysterectomy to to fibroids (apparently linked). After initial treatment my TSH went down, so did my cholesterol. Now my TSH is 2.9 has risen from 2.3 last year) and my cholesterol is 5.1 (was normal last year). I’m also on Mounjaro which has helped with the weight loss.
The gp has messaged me to discuss the cholesterol which he describes as ‘borderline high’.
I’m wondering about asking for an endocrinology referral or going privately to see someone.

Untreated or poorly treated underactive thyroid can lead to high cholesterol. With a TSH of 2.9 you're definitely under treated.

NICE guidelines state that statins shouldn't be started until your thyroid is properly treated. Might be worth having a Google so you can arm yourself ready for your chat with the GP. As previously mentioned, GPs in general have quite poor knowledge of thyroid disease and all the other things it can impact, so it's definitely useful to try and learn what you can so you can advocate for yourself.

Following with interest.

I have a number of chronic conditions that produce similar symptoms but have only recently discovered that my haematologist suggested to my GP that thyroxine and zinc be prescribed some months ago - but the practice lost the letter, so nothing happened.

Only at the recent follow up with the haematologist did I find that this had been recommended so he wrote to the surgery again. Expecting it to be prescribed automatically on receipt of the replacement letter, I began chasing the surgery as nothing had arrived at the pharmacy.

I am now told my levels are not low enough and so have a GP appointment to discuss next week.

My symptoms that I think might be relevant are:

Utter exhaustion. I can now only tolerate being out of bed for four hours max.
Nausea and lack of appetite
Thinning hair
Constantly cold
Fluid retention
Itchy flaky skin
Weight gain (massive) despite eating next to nothing
Stabbing electric shock pains in my torso and breasts
Stomach issues ( though that could be related to other problems)

I hope things go OK for you OP.

Arm yourself with info. Highly recommend stop the thyroid madness

this is also somewhat helpfuk
https://www.btf-thyroid.org/thyroid-function-testing

https://stopthethyroidmadness.com/lab-values/

To feel your best you want to be optimal. NOT “just”’within normal ranges.

Thanks-I hope my surgery is the same because really can't afford to shell out £400+ for separate private blood tests! I'm yet to get my head around T3 and T4-is it something I should be looking into? I know my antibodies are sky high but I don't think that's something to keep track of, just helps with the original diagnosis IIRC? I don't think the levo has kicked in yet as I still feel rubbish :(

Very interesting about the cholesterol - I didn’t know there was a link between hypothyroidism and high cholesterol. My cholesterol was borderline high recently but the GP didn’t mention it might be connected. There seems to be a lack of joining the dots when it comes to thyroid treatment.

It’s also linked to PCOS, which itself is also linked to high cholesterol.

If you do have PCOS or think you may, or if you have any other increased risk factors for diabetes (family history, gestational diabetes) be careful of statins as there is evidence they increase the risk of developing T2 diabetes for those already at risk.

Private blood tests don't cost that much! If you look on Thyroid UK (I linked it a few posts back) there is a section of private testing. If you're happy with the tests that use a thumb prick type thing, these are actually really reasonable. However, I can't do that, so I tend to pay the extra for a blood draw, or recently I had a test with Blue Horizon and paid the extra £15 for the autodraw device you put on the top of your arm, which didn't hurt in the slightest. Thyroid UK also has some discount codes, plus a lot of the companies have their own discounts including black Friday ones. I've used Medichecks a fair few times in the past for various things, think they've got 25% off everything at the moment for black Friday.

You're right that you don't really need to keep an eye on antibodies once you've had a test showing that they're high. That just shows that your thyroid disease is autoimmune based.

You should definitely learn about T4 and T3, and it's very important they are tested. Basically, T4 is a storage hormone, and T3 is the active (and all important) hormone. T4 should convert to T3, but people quite often find when they do tests that this is a problem (low T3 might indicate this for example). If you're not converting well, and therefore don't have much of the active hormone that every single cell in your body needs, then it isn't a surprise you're not feeling well. It could also be that you're simply not on a high enough dose of levothyroxine of course, but without the whole picture of TSH, T4 and T3 results, it is hard to tell what is going on.

@ProfessorMacandCheese this is SO helpful thank you!

I have the Levothyroxine now-100mg 🤞🤞🤞

Another blood test booked for 3 months time.

I hope it helps you to feel better very soon.
Best wishes for it and your recovery.

Thank you so much ☺️

Your doctor is hesitant I would guess because they think your numbers are borderline and they can flip flop a little. You can feel absolutely fine on those numbers, or feel awful, it’s very individual and you can go either way at those levels I think.

I’ve only been on the tablets for 3 days and already feel a little less bone tired- not quite so fuzzy. I thought they didn’t kick in for months? Only a little, but it’s noticeable. I’m not complaining, mind!

I’ve stopped HRT at the same time though- could it be that?