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.

I have my blood tests in a few days. TSH was around 10 and been on 50mcg levo for 3 months now-just want to know whether I can expect a big difference in numbers or not to get my hopes up? I'd probably rather stay on the 50 than go any higher (not that I've had any side-effects so far) I know no one can say with any certainly, I just want to be realistic and not disappointed if the numbers haven't come down much. I feel OK, I didn't feel that bad before though so I've not really noticed any major difference.

Had my TSH redone, 4.4 on 100mcg levo
they wanted me to go to 125 alternate days and I said look I’m 5ft 10, just give me the 125 daily. She laughed and prescribed it
never got my TSH anywhere below 4 yet (hashimotos)

it needs to be based on bloods and how you feel. Everyone is different. You may need to be monitored more frequently for a while or go back when you feel unwell again. Usually around tsh 1 is best as a baseline but every one is different

it can change with hormones too. I’ve been up and down during peri menopause. Am on more again now due to taking tamoxifen

I’ve now been on 100mg of Levothyroxine for 9 weeks. I had blood taken on Thursday, and the Dr wants to talk to me tomorrow (I’m on holiday abroad, so can’t go into the surgery). I’m assuming she wants to tweak the dose.

After the first couple of weeks feeling on top of the world, I’ve felt increasingly rubbish, so I welcome this. I’m not nearly so tired as I was before the meds though.

Yeah I do wonder if I even need to worry about getting it below say 5. Considering 10 is only borderline to begin with (I know it's kind of high before the NHS prescribes meds) I find it hard to say whether I feel well or not! Whether that's because I've felt rubbish for so long I'm used to it or not I don't know.

I think I have marginally more energy. My aches and pains are better (but I figured out that was more likely due to my mattress) my mood is up and down. I'm not looking to get pregnant so don't need a very low TSH. I guess I have no issue with going up to 75 or 100 if the numbers say I need to though.

Having a TSH of 10 is not borderline and is in the long term damaging to health, it can cause problems for cardiovascular system, bone density, Cholesterol elevation, goiter, heart disease,

https://www.yalemedicine.org/conditions/goiter

A gaiter in itself can cause further problems, its best to avoid getting a goiter therefore not having to have it treated.

Well I dunno but it says borderline on my test results. And hopefully it's come down somewhat since then! But I take your point. If it's not gone down sufficiently will just have to go with a higher dose of levo.

no - borderline is more of a diagnostic label.

of you are on thyroxine tsh needs to be kept at healthy levels. “Healthy levels” (ppl without thyroid disease) are actually often below 1, but they’ll be making t3 from their thyroid gland. When the gland stops working we must rely on t4 to t3 conversion in liver, peripheral tissues and possibly gut.

as a comparison; for healthy and safe conception, women must be below 2.5 tsh, ideally 1. And kept below 2.5 during pregnancy, This is in the nice guidelines.

local trusts have changed some levels - my area deems over 3 (and i actually think they’ve recently changed it again to over 2.5) as “consider dose adjustment.”

get it below 2.5 first. Then consider tweaking a bit more with Gp - I find I only need 2-4 more 25s per week to bring it to 1 from that level, but everyone is different.

It’s very easy to normalise how we feel I’ve found. It’s only when feeling a lot better I can reflect on my symptoms

@WarriorN very helpful thanks! I knew NHS guidelines had the bar way too high but seeing I was technically only borderline helped me not to panic I think. And yeah agree I really don't know how I feel atm other than pretty sure my energy levels aren't back to normal yet. Of course I could also be iron deficient again by now too...

https://www.btf-thyroid.org/thyroid-function-tests

further information on the Thyroid Uk website, shows TSH as between 0.4-4 and FT4 and FT3 levels

is it the FT3 that is possibly 10 - which would be borderline as the lowest result would be 9

you don’t need to panic; they do titrate slowly at first. It can take a long time to get things right. Sometimes the gland can deteriorate further during this time too.

after the next change I’d ask for iron, vit d and maybe b12 and folate to be checked. It’s after my levels have normalised that those have dived with me and fatigue symptoms came back. Again, everyone is different but it does seem to be common. And why non nhs sources say to supplement with those things.

My test results showed that on 100mg, I’d swung the other way and was now overactive. I’m on holiday, so the Dr recommended halving my tablets until I get back, when there will be a new prescription waiting.

I have been either shivering, with teeth chattering, or burning up from the inside- my body is so confused at the moment. I have a retest in 6 weeks.

I have reduced mine too as the doctor says I’m over medicated. My feet and hands are freezing, I’m cold a lot of the time. It’s so difficult.

Oh yeah I see the range on my test now. For some reason the result still says borderline though-assume it's because they don't give meds til you get to around 10? It's definitely the TSH. I don't think I know what my FT3 even is.

SO helpful thank you. I definitely need to get all the rest checked as well. I was on a lot of multivitamins before but I stopped taking them a while ago.

Doctors do give thyroxine when TSH goes over 4 the link I gave gives the parameters for TSH, if the TSH goes over 4 they can increase the thyroxine, as they can decrease under 0.4

@MikeRafone oh I see. I'm just going by what I read online about people struggling to get meds or their doc to take it seriously.

I had thought your TSH was 10 and you thought this was borderline.
Then your comment about not bothering if it is 10 as you weren't looking at getting pg, thus me putting up the links etc about how dangerous this would be, due to health affects of having a TSH at 10
Now you are saying is just what you have read

If your TSH is 10 I'd suggest getting a second opinion if your gp isn't treating you to get your THS down to nearer 5.

I shall leave it there

@MikeRafone I think there's been a bit of a misunderstanding about what I meant. I see now how it looks like I said my TSH was 10 after a blood test-I meant it was that on diagnosis and my next blood test is coming up. I'm hoping it's now around 5 (might be being optimistic though I don't know) and was wondering if I can keep it around that number or need to go on a higher dose of levo to get it even lower. I wouldn't leave it at 10-I know that's far too high-even if my test results said borderline!

I have noticed that neck pain has reappeared since I reduced the dose. Does anyone else suffer from neck and jaw pain?

Other than the neck pain- I feel so much better!

That's wonderful! Can you describe in what way you feel better (appreciate it might be hard to put into words) more energy? At the moment I don't really feel good or bad. I definitely still have brain fog and my energy levels are nowhere near up to what they should be yet-maybe that's the difference between feeling "meh" and good/great, I don't know. I think I'll definitely be going on a higher dose of meds.

I don’t want to sleep constantly; my head doesn’t feel as woolly; the pain in my upper body is much reduced (other than neck).

I just feel like I have more energy.