How long did it take to get your thyroxine dosage right?

[hattyyellow]

I finally managed to persaude the doctors to put me on thyroxine a few months ago. I have two doctors - one who is excellent and actually thought to look for antibodies/listen to how I was feeling/accept that even though my levels were only just going out of range I still needed treatment.

Other doctor just not interested. SHe eventually put me on 25mg. I upped to 50mg and saw instant change in many symptoms - my skin cleared up in a week after being bad for several years since pregnancy. I stopped feeling crap in the morning. Felt much calmer. Brain fog started to clear.

All great. However the last 5 days I've felt awful again. Constipation has come back, tiredness, feeling anxious and really depressed in the morning. Despite a lot of sleep I still feel exhausted.

Is this common? Is a fluctuation normal? Do you still have bad patches on the right dose? Rang and spoke to nice doctor who said they can prescribe me 75mg if I want.

Feeling down as I'd felt so euphoric that all the symptoms I've had over the last four years since my first pregnancy had got better and now I feel back to square one again.

Will it ever get sorted out? Please tell me any encouraging stories!

I can handle feeling crap again if I know it's not for ever. Just worried I will take higher dose and still feel rubbish.

Hi hattyyellow. I think it's best if you can have blood tests done after at least 6 weeks on a certain dose to see if it's sufficient. For me it took about 3 months to get my hormone levels where they should be. I started on 25mg, then went up to 50mg, then 50 mg and 70mg on alternate days. Do you happen to have your blood test result from before they put you on thyroxine?

And don't worry, you will get better, and you will feel human again

i did not feel better until i ditched thyroxine for desicated thyroid. thyroxine made my TSH go to 0.1 but FT3 and FT4 did not scrape over the line.

feel loooverly on armour thyroid.

i never let them look at just TSH or let them tell me i am fine no when TSH scrapes just below the upper limit.

Cheers both. Think I will give the 75mg a go.

duende what's the rationale between varying the dose on different days? Is this aaimed at dealing with fluctuating levels?

It took me a few months, like you I started on 25 and was told I was borderline. I'm now on 175 following many blood tests. I still have times when I think it's a bit low, but they won't allow me to go any higher.

Chloe that's interesting that you were also borderline but have ended up on a high dose. Did your body give up making its own thyroxine? THe doctor said that maybe I'm feeling so rubbish because my body is doing that. Which I find a bit scary! How long did you have between increases and did you get any initial relief at each rise in dosage? I've gone from 25mg to 75mg in a couple of months..

hattyyellow - I felt like that as well when I started on thyroxine. Whenever my dose was increased I would feel great for a while and then it felt like things were slipping back again. Like you I was worried that I would end up on a mega dose. But in fact I found things just levelled out at the 'right' dose, but it took a while to get there. I'm now on 125, have blood tests every three months and find that my doc tinkers with the dose very slightly but overall I feel so much more human than I did before I was diagnosed.
Take heart from the fact that you felt so good on thyroxine - it sounds like you just need to get to the right dose. Remember to be patient as your body needs to get a chance to adapt to the change in dose. Good luck and hope you are right back to normal in no time.

I have also been upping my dose, in 2 years I have gone from 0.75 to 1.25. Still feel very low and tired at times. When I have a busy day I often feel like an old woman at the end of the day, and in bed by 9.00.

I recently got a letter from the doctor
saying my Free Thyroxine is 10.9 and my Thyroid Stimulating Hormone is 9.68. Does anyone know what this means?

you have got hypothroidism well and truly at those rates. TSH should be close to 1 and FT4 should be about 19 i think. you must feel dreadful.

Thanks so much all for your advice and support. Will try and be patient! So sorry that others are going through the same thing but useful to have your advice!

you should join TPA-UK. google them. you will find them very helpful on this matter.

Thanks moocowme- will have a look.

Does anyone else wonder if their thyroid has not been right for a long time? I have a friend whose thyroid was spotted as a teenager and I wonder if I have had probs since then..

now that I know the signs and I know how differently I feel when the dosage is working I look back and feel that a lot of anxiety/mild depression/constipation I've had for years has been due to thyroid probs..

It's a weird sympton I know but does anyone else get a "flicky" eyelid when their thyroxine is too low? Like it needs constant rubbing. Please dont think i am mad ....

I was on 25mg for about 2 years and have recently been put up to 75mg but have had 2 blood tests to make sure that is correct. Also am blood tested yearly, but has taken about 6 months to get the readusted dose right.

my boyfriend has got a constantly flicky eyelid..have never thought of having his thyroid tested...might suggest it as he is permenantly tired.

Never made the connection before but I do get the flicky eyelid when really tired and stressed - not sure if that is due to low thyroxine...

It's astonishing the difference the thyroxine makes. My skin cleared up in just a couple of days and my hair is transformed -after years of being a bit blotchy and prone to breakouts. Wish I'd known about thyroxine years ago!

Hi I have read that VITAMIN D deficiency can be linked with hypothyroidism. Look it up www.progressivehealth.com/vitamin-d-thyroid.asp

It is also interesting that it is fat soluble so even if you have spent 8 hours out in the sunshine, as soon as you put soap on your skin the vitanin disappears.See Dr Mercola for that one! It is interesting that when pregnant the baby takes the mother's vitamin D. Wouldn't you think that any doctor with half a brain would do a vitamin check???? Perhaps not - they would rather chuck drugs at you than do any serious investigation into your problems.

wow - i never knew about the eyelid thing either - mine does it quite often

My experience is that your levels can only go one way - up and up - but like i said, that is only my experience. I started (at age 12) on 25mg a day, and over the years, have seen the dosage go up and up - i am now on 250 a day My latest bloods showed quite low levels again, so i fully expect another thyroxine increase in a couple of months.

I am interested in hearing about the alternative to thyroxine - as i am getting quite worried about how much thyroxine i will end up taking - esp as the pharmacists always seem to comment on how high a dose i am taking

And apologies if i am teaching grannies to suck eggs, but it is best to take thyroxine first thing on a morning. I had been taking it for 12 years before i got told this (previously taking it on a night) and i noticed a huge difference!

hattyyellow - YES to the flicky eyelid thing with me too! It was one of my list of symptoms i approached the GP with a year ago that resulted in my hashimotos diagnosis.

1 year later i am just about there with being symptom free on 125mcg. I had to start on low dose of 25 and keep upping it - was so scared at first that my heart would play up as I have mitral valve prolapse which gives me horrid extra heart beats and palpitations at times. Have since read of possible links between my dodgy valve and being hypothyroid.

I think as long as you keep having your levels checked and try to get your TSH nearer to 1 then you should feel better soon. In the initial time of your thyroid malfunctioning i think it can splutter up and down before it finally gives up the ghost!