Medicated for hypothyroidism, but still showing many symptoms

[ItWillAllBeOkayInTheEnd]

I have been taking levothryoxine for over 10 years, currently on 150 mg (mcg?) but still have about half the symptoms from the list on the thyroid uk website (tired, overweight, dry eyes etc).

Looking back at my last test results, it appears that the only thyroid test which was done was Serum TSH level which was 3.9 with a healthy range of 0.35 - 5.0. I had asked for a full set of bloods because I was particularly concerned about my weight. My GP specialises in endocrinology. I have an appointment booked for a few weeks time. Does anyone have any suggestions for what I should be asking for?

It's miserable when you are not optimally medicated. You need to see an endocrinologist. Your gp is no substitute for an endocrinologist. Don't accept anything less. Your tsh is far too high. It should be 1 or under once treated properly. You could contact healthunlocked/thyroiduk.

Thanks Imagine I have looked at that website but came away even more confused. There appeared to be lots of people buying medication off the internet, which made me slightly nervous!

I don't think I can increase my levothyroxine, as I got palpitations at a slightly higher dose. Do I want to get FT3 tested? And if it is abnormal is it medicated with something else?

If you are symptomatic, you are under medicated. Have you looked at the 'stop the thyroid madness' website?

Do you have t3 and t4 results from any bloods previous,y fine?
You might have a prob with converting the. Inactive form, t4 into t3 and if so, no among of levothyroxine will help.
Have you also had thyroid antibodies tested via bloods?

Bit to get your teeth around but it will hopefully make sense if you read around on the STTM website.

I would second the advice to go to a proper endocrinologist. GPs have such a wide range of 'normal', and my consultant has a very narrow range

When your dose was higher what was it? Was it higher every day? I'm on 175 five days a week and 200 on two. Previously I was on 200 three days and that made me feel awful - so just 25 a week more had a big effect on me. A good endo will tweak your dose and help you find the right one

Also, simple stuff but are you taking your meds first thing at least an hour before food/drink/caffeine?

Sadly, an endo might not be the answer you want, depending on your age. I complained that I was symptomatic and my GP thankfully sent me off to the endo for the first time (diagnosed with thyroid cancer 22 years ago). I was told that it was my age (I'm in my 50s). He didn't listen to any of my symptoms at all, except to say it was my age. He did give me what I wanted, which was an increase back to the dose I have taken over most of the last 22 years, but told me that I had been incorrectly treated all that time, as guidelines have changed since then. He told me that feeling symptomatic was quite normal and nothing to worry about and I should just put up with it. He wants to wean me down slowly to 100mcgs or under. Its not going to happen. I can't afford to buy my medication from the internet, but I will do it if they are going to do that. I have about a year's grace, as he wants a bone density scan before he decides. Meantime, my meds have gone back up and my symptoms are starting to resolve, thank goodness. I am really pissed off, as I have several on-going symptoms that suggest I am not converting T4 properly.

It looks like I've never been tested for T3. FT4 was tested 2 years ago and was in normal range.

OP I have no advice but am in the same boat with regards to symptoms goodness knows what my levels are as I never get to see them GP insists I am on the right dosage same as you and same symptoms massive weight gain feel too shattered to increase exercise properly. I work part time and kids at secondary and some days when I am off I am so tired I go to bed mid morning and set the clock just before DC come in from school (sleeping much of the day - and when I get up I still feel tired). No chance of seeing an endocrinologist in my area although I did see one before he retired at initial diagnosis 15-16 years ago it’s no fun sometimes I feel getting up from the couch to go for a wee is too much effort and feel like I could sleep when trying to make the tea. I also feel easily irritated and am quick to get angry and frustrated which doesn’t feel like me but could be to do with menopause. For you 🌺 for you OP.

My GP kept telling me that the normal range was fine when my TSH was tested. Turned out that after being treated with thyroxine, your TSH should always be down to 1.0. Thus said the NHS endocrinologist I subsequently referred myself to after about 4 years of being told by GP that my dose was optimal, and assuming it was other things causing the problems.

Also you need your vitamin D up to at least 70-120 for thyroxine to work properly. NHS endo said please take at least 2000 iu a day for rest of your life, and gave me a supplement to bump up my levels which were 50 mol at time of testing, then when it was at 100 mol, told me take the 2000 iu daily.

Oh and on the weight thing - my endo basically said the right meds really don't make that much difference. Cutting down on calories will. I saw a couple of my lead endos team and one suggested 800 Cals a day and another gastro band and Metformin. Sadly I can't blame my thyroid probs on being a fatty!

Get your T3 tested. It's made all the difference to me.

I have hypothyroidism and symptoms, and got also palpitations when on a higher dose, so I got referred to an endocrinologist last month. They tested for various vitamin levels and t3 and t4 levels etc, and everything came back fine so I've been discharged back to my GP. Sigh, thought I.

I also felt a little suspicious of the websites after my money, especially as I've been down that road before with one of my children who has a disability. I wasted money on nonsense.

My GP has prescribed me some new pills that are just 12.5 mcg to top up my daily dose in the hope that symptoms will subside without the palpitations kicking in. I've just been on them a few days, so can't tell yet if it'll work. You could maybe try that?

I was on 175 until a year or two ago. I'm 45 now.
I'm pissed that I need to learn all this stuff just so I can get correctly medicated.

Can a GP get a test for FT3 done? Or do I need to go to an endo for that?
thanks all.

You might want to try 175 again but just a few days a week. Or just the weekends. You do not need to take the same dose every day

I'm off to bed now, but I'll catch up with all your suggestions tomorrow. thanks again

Please do pm me if you find any other options that sort you out. I find the worst of the symptoms is hardly being able to feel my clit. My fingers and toes are rather numb too, but that doesn't bother me nearly so much!

I'm in the same position as you Mumsknitter - feel quite odd if I take too much thyroxine, even if only slightly too much.

However, I am interested in the auto immune protocol diet, even if a slightly less strict form allowing coffee and a few nuts every now and then. I'm trying it out to see if it reduces all these aches and pains and increases my energy levels which are shockingly low. Exercise feels fine at the time and then I feel utterly exhausted, (took up running and my TSH shot up last year) so need to tackle other ways of dealing with the thyroiditis - iin hashimotos antibodies are attacking the thyroid gland.

I'm on 125 a day, but I am also trying 25mcg extra twice a week on Mondays and Thursdays, before I have my next blood test. TSH shot up again to 5 after going down to 1 last year when increased meds from 100 to 125. Something is attacking me!

Echoing what others say - your TSH is too high and needs to come down

Have you got Hashimotos?
My endo has insisted I go onto a low-carb and largely sugar free diet, and it's made the world of difference to me
Currently BFing and typing with one hand so can't give a hugely detailed post, but Hashimotos is linked to a number of metabolic issues (plus potentially raises your risk of type 1 diabetes apparently so it definitely won't do you any harm) and your ability to regulate blood sugar properly. He is a professor of endocrinology and said he wants his thyroid patients to go low-carb

You should also ask to get your ferritin and b12 levels tested as they often are too low

I've also taken Vit D supplements and it's helped me a bit

Have you considered there might actually be something else going on alongside. We all know that with one autoimmune disease comes another. That said I've recently started using PillTime online pharmacy for all my meds, my thyroid for the first time in years is stable. They keep to the same brand for all dosages and long term so you have more stability than say Lloyd's that give you whatever is in stock and constant different brands.

You're under-medicated. On Levothyroxine you're looking to have a TSH around one and FT4 and FT3 close to the top of their lab ranges. If you're a slow converter of T4 to T3, you'll need T3 in some form as well.

You should not have to put up with continuing symptoms when the objective of your treatment is to make you well.

@MumsKnitter have you had your b12 and d tested? My hands hurt when my d is low, my feet hurt (and I get the same kind of numbness you describe) when my b12 is low.

With b12 injections the feeling and sexual responsiveness all came back but it can take a while.

Slutty yes, that's why I asked for full bloods last time. I'm not obviously ill, just not completely right. I don't know what other illness I might have.
I always have the same brand meds, so I don't think it's that.
I'm going to be more careful about taking meds one hour before food. I hadn't realised you aren't supposed to take them with your morning cuppa! Thanks to pp for that suggestion.

ItWillAllBeOkayInTheEnd Over the years I had got a bit sloppy and short of time on a morning thought it wouldn’t make a difference taking thyroxine with my breakfast. I changed after reading an article and after a blood test my dosage went down to 125mg (fist time it had reduced in 13 years since it was reduced after my last pregnancy.
I wake up so hot on a morning do others experience this when I put my glasses on as I get out of bed i’m so hot they completely steam up do others have this? Also wake up several times in the night hot thirsty and wanting a wee (doc says i’m Not diabetic)).

Thanks for all your suggestions. My GP appointment isn't for another couple of weeks, but what should I ask for? Lower TSH and T3 & T4 tests? Referral to endorse? Anything else?