Feeling worse on Levothyroxine

[Ireness]

I'm 63 and started on 50mg Levothyroxine 6 months ago. It seems to have plunged me back to menopausal symptoms I haven't had for years: irritability; night sweats; hot flushes (worse than menopause); migraines etc. The tiredness and weight gain haven't improved either. Is this normal? I feel dreadful.

[SlowDragon Administrator]

You should have had repeat blood test after 6-8 weeks on starter dose 50mcg Levo

All thyroid tests should be done as early as possible in morning and fasting and don't take any Levo in 24 hours prior to test, delay and take straight after blood test

If you have retest results post them here

Ask GP to test vitamin D, folate, ferritin and B12

Very common for these to be too low stopping thyroid hormones working well

Do you know if you have high Thyroid antibodies (Hashimoto's )

[Ireness in reply to SlowDragon]

Many thanks for your reply. In August my TSH had gone down to 1.5 and T4 17.5. I had taken my tablet before the test though (I didn't know I wasn't supposed to take it). I'm going to get private blood tests done as I've done them before which confirmed antibodies and low ferritin but my GP doesn't test for them. A consultant I paid privately for confirmed Hashimotos in March. I paid to see her because GP's for over 10 years had said my thyroid was normal. She was quite annoyed it had been left so long. I would stop taking it to be honest as I feel worse than before but I'm worried about it affecting my heart.

[Rapunzel]

It is normal not to feel better or feel worse if your GP leaves you on a starting dose, which is what 50mcgs is. My GP did it too, so don't be surprised.

Many hypos only feel well with TSH suppressed and in any event, your medicated TSH should be equal to or less than 1, not just somewhere in the range. Way too many doctors are convinced that a suppressed TSH leads to atrial fibrillation and / or osteoporosis and continue to tell patients that they are adequately medicated with a TSH anywhere within range.

Beware random consultants; plenty of them are equally rubbish although your'sd sounds quite good. E mail LouiseRoberts for a list of peer recommended endos.

Don't put up with how you're feeling but you'll have to put up a fight to feel better and it's a slow slog

[Ireness in reply to Rapunzel]

Thanks for your reply. The Consultant said she'd start me on a low dose in case I got palpitations but it'd need to be increased. My GP won't increase it though. I wish there was a specialist thyroid unit in the UK we could go to

[humanbean in reply to Ireness]

Too low a dose of thyroid hormones can cause palpitations as well as too high a dose.

[Ireness in reply to humanbean]

Thanks ..from what I'm finding out I'm pretty sure my dose is too low

[Rapunzel]

Can you go back to the consultant? She must have omitted the bit about an increase in her letter to your boneheaded GP.

[Ireness in reply to Rapunzel]

Yes ..she said I could go back anytime but thought that my GP should sort it and I shouldn't have to pay (consultation was £349). I think I'll have to find a private GP in the Manchester area so I can try NDT and see if that's better

[Rapunzel in reply to Ireness]

Don't do that just yet! Try to get a prescription for enough levo to improve your condition first, before you start paying money for NDT or T3 for the rest of your life... surely that's worthwhile?

No thyroid med is a magic bullet and we've all found that things take time to improve on this tough journey. Don't give up on levo, on which many people recover their previous good health, without giving it a fair trial.

In any event, you should find that a return consultation with your existing off the nhs grid consultant will cost less than the first consult.

[Ireness in reply to Rapunzel]

Okay -thanks - I'll go back and see her

[SlowDragon Administrator]

With Hashimoto's it's very likely you need to be strictly gluten free. Suggest you try it for 3-6 months minimum

Essential to get vitamin D, folate, ferritin and B12 optimal not just in range

These need doing before trying NDT or T3

[Ireness in reply to SlowDragon]

I'll try that ..I've pretty much given up white bread but will do it properly ..thanks for your advice

[SlowDragon Administrator in reply to Ireness]

Gluten free means absolutely nothing with wheat, barley or rye.

Read all labels carefully.

Oats are ok, but only if certified from gluten free mill

M&S are good on GF

If you drink beer or larger, these need to be gFree too

[Ireness in reply to SlowDragon]

Great ...gluten free foods seem to be more available now

[SlowDragon Administrator in reply to Ireness]

Wide choice. Can be expensive. Cakes and biscuits tend to be too sweet.

M&S seeded brown bread is fantastic, & their mini quiche are delicious.

Tesco do nice ready to roll pastry (but does contain soya lecithin) Great for making chicken or lamb pies

Bone broth is great for healing gut

thyroidpharmacist.com/artic...

Masses of GF cookery books

[kittenmittens]

My advice would be to go to a different GP, this one is not understanding of hypothyroidism and should really be increasing your Levo dose if you're symptoms are not getting better. I had to try a couple of GPs before I found one who was understanding about it. I would also asked to be referred to an NHS Endocrinologist, if you have to push for it explain that you are feeling worse and that you feel the treatment you are on is not working and you would like to see a specialist to find out why.

When I started taking Levothyroxine (T4) I felt worse too, I ended up doing better on Liothyronine (T3) but I would advise you to try all options with T4 first, before giving up on it, many do fine on T4 if they are given the right dose.

[Ireness in reply to kittenmittens]

Thanks ..this is the 4th GP I've had over the years. She was recommended by the endocrinologist so I thought it'd get sorted. All the others told me it was normal ..even when private blood tests showed it wasn't. It seems to be a long journey getting it sorted. I feel like a zombie most of the time but push myself to do things. It'd be nice to get the energy to enjoy life like I used to. The Endo I saw privately works in the NHS too so I'll try to go via that route (must admit I hadn't thought of that so thanks)

[kittenmittens in reply to Ireness]

It is a fight, but you just have to really push for what you need and stand up to those who don't understand. This can be hard to do when you're totally exhausted and have brain fog, but unfortunately that seems to be the way of it, there are problems with how Hypothyroidism is treated in the UK, and you have to look after yourself and fight for yourself, but you can do it. You're not alone, and people on this forum will help and support you in this fight x.

[Ireness in reply to kittenmittens]

Must admit the advice I've had today has been really useful and I appreciate it

[Cmat]

Selenium can help. I started taking 200mg/day after reading books by Dr Isabella Wentz, I think it can help convert T4 better. Brazil nuts can vary too much in how much selenium they contain so a supplement can sometimes help.

[Ireness in reply to Cmat]

Thanks ..think I've got a lot to learn

[Legoparis]

I am 61 and have had very similar experience and things are now much better I did have my meds increased to 100mg but I felt dreadful so back to 50 then following advice from here I started taking my thyroxine tablet at least 1/2 hour before any tea etc in morning with glass of water to try and ensure on empty stomach then in middle of day took time -release feroglobin tablet and tried to minimise tea and coffee and winefor rest of day then apple juice and lots of mint tea I have stopped worrying about eating wheat just being sensible and walking a bit each day 2 months on I have lost over 1/2 stone and feel so much better( ps had thyroid problems since age 30)

[Ireness in reply to Legoparis]

Thanks ..I always take my tablet at least an hour before breakfast. I rarely drink tea/coffee but can't say the same for wine lol. Maybe I need to cut back on that -don't know if it affects the thyroid. The only way I can lose weight is to go on a food pack/600 cal diet. I can lose weight albeit slowly but can't keep it off.

[SlowDragon Administrator in reply to Ireness]

Essential to get your vitamins checked.

[Ireness in reply to SlowDragon]

Thanks ..I'm doing tests again this week.

[Phoenix605]

Hi, do you know good testing protocol? Overnight fast, can have water, no meds or supplements til after the test, dont take any supplement conaining biotin for a few days before, earliest possible test?

TSH peaks in the early hours and then declines so early test is essential, by 9 at the latest. GPs are TSH fixated so you want it as high as possible if looking for a dose raise (or avoid a drop). If you havent already, go onto main TUK site there is a symptom checklist and a what to expect from diagnosis and treatment section to give you the basics, you can also email louise roberts for a copy of the Dr Toft Pulse article which points out the need to get TSH nice and low. You can take copies with you and point out you have taken advice from TUK and they are signposted by NHS choices. There is no reason you cannot ask for referal to a specific NHS endo, especially as you have already seen her albeit privately.

I am 48 and 18 months diagnosed, I felt worse when I started treatment than pre diagnosis. I only reached optimal for thyroid meds and nutrients recently, unfortunately they can only be raised slowly. You should be retested 6-8 weeks after every dose change but they try and stretch it, my first GP tried to say 3 months. I didnt know better and let them at first so my results would improve then backslide. They should increase levo in 25mcg increments until you are symptom free. Generally this means TSH 1 or below and FT4/3 in upper part of their ranges.

All those returned menopausal symptoms you mentioned, they are actually hypo symptoms too, my hypo was diagnosed when they tested for menopause believe it or not, no menopause here yet but thyroid is b******d!

I had my symptoms listed and scored for improvement/not each appt. If you just say feel dreadful or no improvement, they say no point in giving more then! Try to be very specific, I used to need 8 hours now I need 10, I used to maintain my weight on x calories now I put on if i eat more than Y, used to do 5 mile dog walks now can only manage a mile etc. I got offered anti depressants so I pointed out that being depressed because I felt crap was a normal response, if he got my thyroid right and I still felt depressed I would reconsider, no depression here and he got dumped.

I know it is hard (I reached 7 stone over and was desperate too) but dont try to lose weight right now. By dropping your calories too much you are putting your body into starvation mode, this drops your metabolism and it is already badly suppressed. You will just burn even less calories, have less energy and sleep more, as soon as you raise again your metabolism will stay low and hoard every calorie against the next famine so you can't keep the weight off. I was high protein, low carb for years and fought the advice that we need some carbs to convert thyroid hormone well, our own or synthetic. I reluctantly adopted a more balanced diet, by adding in some rice and potato and did find improvement. Still wasnt losing but eating 1500 without gaining and less tired, before I was gaining on more than 1300. Most of us have digestive issues which affects nutrient absorption, this again affects conversion. By the way GPs and endos rarely know any of this.

Hypo symptoms are 'non specific' they tend to get blamed on anything but your thyroid and cross over too. Hypo, hyper, low vit D or B12 all share symptoms so worth getting the nutrient checks suggested, a lot of miscellaneous niggles and outright joint pain disappeared when I sorted them.

There is no quick fix but you can get there, stick to your guns, you will always find someone here who can relate and advise even if you think its trivial or just need to sound off.

[Ireness in reply to Phoenix605]

Many thanks for your reply. I've definitely done the testing wrong. My GP made me wait 6 months for the first blood test after starting thyroxine and when I had the test I fasted but took a tablet in the morning and had the test done at 1.30pm. Plus I was taking a supplement the Endo had advised me to take. I'm doing private tests this week so I'm grateful for all the advice I've had on here and will hopefully get a good result.

[FancyPants54 in reply to Ireness]

Are you starting to feel better now Ireness?

[Ireness in reply to FancyPants54]

No ..unfortunately I had some tests done and they found I’ve got left branch bundle block. GP won’t refer me to a cardiologist until she’s tested my thyroid. I’m pretty sure it’ll be my thyroid that’s caused it ...have you heard of this?

[FancyPants54 in reply to Ireness]

I'm sorry to hear this. No, I've not heard of that. I imagine it's a heart issue? The 2 should not be dependant on each other surely. I'd be insisting on seeing a cardiologist if it's a heart issue.

[Ireness in reply to FancyPants54]

When I saw my private endo in March 2017 she said she hoped my heart hadn’t been affected by not getting medication years before when I should have. She was quite annoyed at GP’s leaving it so long and with them saying it was normal. Since then my GP still refuses to up the dose as she suggested. If I could afford it I’d just go privately all the time but it’s £360 for a consultation.

[FancyPants54 in reply to Ireness]

Can you switch GP surgeries and find a more responsive GP? Or a different one at your surgery?

[Ireness in reply to FancyPants54]

Yes I’ve been thinking about that today

[Hidden in reply to Ireness]

My husband has a left bundle branch block caused by a dose of food poisoning 30+ years ago. We have just seen cardiologist on another matter and she picked it up on ECG but says no problem and he’s 74.

[Ireness in reply to Hidden]

Thanks