New diagnosis : Hello, I was hoping for some... - Thyroid UK

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New diagnosis

Annaoj profile image
13 Replies

Hello,

I was hoping for some advice. I am a 42yr old woman (157cm tall, weighing 57kgs). My TSH levels are 23.23 Mu/L and T4 is 9 Pmol/L. I was prescribed 50mg Levothyroxine 3 weeks ago and told I would feel like a new woman (Dr's words) within 3 weeks. I started to feel less fatigued and my mood improved after a week, but during the last week my symptoms have worsened - very low mood, tearful, exhausted and I've experienced anxiety and tremors. Is this normal does anyone know? Should I just wait and see how it goes or insist on seeing my Dr sooner than the recommended 8 weeks after initial diagnosis. Any advice would be gratefully received.

Thanks

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Annaoj profile image
Annaoj
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13 Replies
bantam12 profile image
bantam12

Your Dr is telling porkies ! It takes a lot longer to feel better, you need testing after 6-8 weeks then dose increases accordingly, you are realistically looking at around 12-18 months before settling on the right dose.

Annaoj profile image
Annaoj in reply tobantam12

Ah okay, what a shame, feel like i’ve been set up to fail. Thanks for your reply.

MaisieGray profile image
MaisieGray in reply toAnnaoj

Its perfectly possible that you could have felt very much better after 3 weeks, some people will definitely have that experience, and others won't. Remember that many people actually do "pop that little white pill" and never look back - that was my own experience for 30 yrs - but we don't hear of their experiences because they are off living their happy and healthy lives and not posting in fora like this. It's not a pass or fail, but is dependent on many factors. Whilst the view amongst patient groups is to re-test c6 wkly, in fact NICE guidelines are 3-4 wkly testing, with dose adjustments accordingly; and perhaps your symptoms improving and then worsening now, indicates a need for a dose increase sooner rather than later. But whilst timely testing etc is very important, it's also important to remember that it isn't a quick fix, that Levothyroxine doesn't work like an aspirin.

penny profile image
penny in reply toMaisieGray

Oh, you dear, you used the plural of ‘forum’.

MaisieGray profile image
MaisieGray in reply topenny

But of course :-)

shaws profile image
shawsAdministrator in reply toAnnaoj

The majority on this forum have found that few doctors know any clinical symptoms (they used to only know the symptoms because blood tests weren't invented then).Now it depends upon the number of the TSH and decisions made upon it alone. TSH is from the pituitary gland - not the thyroid gland and it tries to stimulate the thyroid gland to give us more thyroid hormones.

So your doctor said you'd feel like a new person in three weeks! Where did he obtain his medical licence? You have to have a blood test every six weeks till your TSH is 1 or lower by adding 25mcg every six weeks..

50mcg of levo is a starting dose!

Always get a print-out of your results with the ranges for your own records. If you have a query you can post them with the ranges. Ranges are important to enable members to respond.

Always make your blood test appointment well in advance in order to get the earliest. It is fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take it afterwards. This helps keep the TSH at its highest as it lowers during the day and doctors seem to only look at it and not take note of symptoms.

Also ask doctor for B12, Vit D, iron, ferritin and folate to be tested when you have your next test.

Annaoj profile image
Annaoj in reply toshaws

Will do, thank you.

jimh111 profile image
jimh111

Each person responds differently. It may be that your thyroid is declining more rapidly and so you need a dose increase sooner. Many patients do feel better after a week or two but it usually takes about 3 months before you recover and maybe a year or so before full recovery. I'd speak to your doctor and see if they can give you another dose increase before the full 8 weeks is up. In some cases now doctors start patients on 100 mcg but many GPs are nervous about doing so because they don't have the experience and old teaching was to go up gradually. Also, you are not a heavy person so your final dose will not be as much as a big person.

Annaoj profile image
Annaoj in reply tojimh111

Okay, thanks for your advice. Have made an appointment for next week, which will be 4 weeks since I started the meds, hopefully long enough for my Dr to reconsider my dose. I did wonder whether the dose was too high initially, but perhaps it’s just not high enough. It’s such a horrible waiting game after feeling so unwell for so long 😔

jimh111 profile image
jimh111 in reply toAnnaoj

There was a study which suggested the first follow-up should be after four weeks as it is not fine tuning and it gets the patient better sooner. If you doctor asks why you are coming back so soon you could say you were not doing well and you'd heard that a first follow-up could be after four weeks. Sorry, I can't remember the study and don't have time to research it.

greygoose profile image
greygoose

My first endo said that in two weeks from starting levo I 'wouldn't recognise myself!' Well, I didn't. But, not in the way she meant! I felt a hell of a lot worse.

It's not that they're lying, they just have no real idea. As MaisieGray says, for some people it is like that. Doctors just don't understand that it isn't like that for everyone. Or, maybe they think they're playing some clever sort of psychological game, like trying to induce the placebo effect - not that levo is a placebo, but if you think you're going to get well, you're more likely to do so. That doesn't always work, either. But, to give them the benefit of the doubt - not something I often do! - that could be what they're trying for. :)

NWA6 profile image
NWA6

Hiya. I’m new to the forum but not new to thyroid problems. I’ve had Hashimotos for 10yrs and I would say the number 1 piece of advise that I’d give anyone who is just newly diagnosed would be to write everything down, dates, tests and symptoms. Then try and learn as much as you can about your condition. These two together will really help going forward. I think your GP really sounded like they were so happy to be able to ‘solve’ your health issues with a simple tablet. I would say that I didn’t book enough appointments with my GP as I felt like I was being fobbed off a lot but in reality I should have been more consistent in ‘hounding’ them. I think ‘hounding’ them every 6wks is a good amount of time for you to arm yourself with a history of symptoms or changes and for them to think enough ‘medical’ time has passed.

They quite often like to let 3mths stints pass by before they think that symptoms are ‘for real’ rather than pyscosomatic.

It does take a lot of patience to get to optimal health. Having experienced hyperthyroid symptoms I think I agree with most GP’s decisions to start on low doses and build up. This way a 6wk check in should help you find your optimal health. Hang in there you are one step closer to good health than your were before you started treatment 😀

Annaoj profile image
Annaoj in reply toNWA6

Thank you for your reply. My husband suggested keeping a journal too and it’s good advice. I am fast learning that the quick fix my Dr promised me is unlikely to happen, and that I need to start paying much greater attention to my health and well-being, something I have thus far taken for granted 😞

I very much appreciate people taking the time to respond and advise on here though, it is reassuring to hear the experiences of others.

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