Hashimoto's/Hypothyriod people - a question about dropping doses

[sunnywong]

Hello

After nearly 2 years of feeling well on my dose of thyroxene, the doctor has asked me to drop from 175mcg (alternating 150mcg and 200mcg daily) to 150 mcg on account of a result I can't quite remember ( was it 0.5 and she wanted it to be 0.3) anyway. I've done this lower dose for the past 4 days now and I feel dreadfully wobbly and have the awful tingling in my hands at night. I 'm terrified that I'll get the brain fog and all that shite again. The doctor recommended I go for another blood test in 4 weeks but I 'm buggered if I 'm going to feel like shite again for any length of time.

My questions are:
How long does it usually take to balance out after dropping a dose level
and
should I just listen to my body and maybe split the difference in the dosage and go 150, 150, 200 over 3 days or would that give me two low days and one hyper day?

Any advice (got some good advice on this thread I slightly hijacked but am really fretting now and am scared I'll continue to feel wobbly and the doc will just tell me to get on with it for a month and over Christmas too. Aaaaaaaaaaaaaaargh

I'd listen to your body and do the dose that suits you. But then I'm supposed to be on 250mcg a day and I always take 300mcg - I feel much better and my last blood test was spot on.

thanks dotty dot

I've read there is natural fluctuation in anyone's TSH levels over any given week. I'm going to call my doc and just tell her I 'm going back to 175mcg. I have been up half the night worrying about feeling awful again.

Being over re-replaced by 25mcgs is not going to give an young-ish, fit person of BMI 23 with no history of heart disease a heart attack is it?

Sunnywong
The change in dose of thyroxine takes a number of weeks to actually show symptoms 4 days sounds way too early hand tingling can also come from hyperventilation and it's at night we all have more time to think and get worked up about things.
I too am hypothyroid and am currently having my dose gradually increased as my TSH won't go below 1 and my GP has said each incremental dose takes a fair while to have an effect.
Go back and ask your gp why she wants the dose changed and make sure you understand her reasons for it. Too high a dose will put a strain on your heart as it beats artificallly fast and in time this will cause damage maybe you had a raised blood pressure or excessivly high pulse.
At least if you understand the reasons why you may feel less anxious.

I'm just getting myself in to a flap aren't I. You're right.

I will go on the 150 for a month and then go back and get tested as the doc suggested. IIRC she said they want to see how much of it my brain think I 'm getting if that makes sense.

Thanks for all the advice, I'll stop being so melodramatic now.

had to start this thread going again as I want to ask some advice

since I dropped my dose I have experienced pins and needles / tingling from my elbows to fingertips almost constantly. My arms feel week and I keep dropping things

I had some tingling before I was diagnosed but not as much as this.

Should I go to the GP before the month is up (I have the kids off school for 8 weeks and I kinda want to be fully functioning for that period) and check this out? It's surely not right is it?

I am also feeling drained and a bit brain foggy but that could be down to a few late nights and starting work one very long night a week

I would be very grateful for any advice

SW, the symptoms of under replacement wouldnt kick in this quickly, i understand that you are anxious about going down a dose, i have now been diagnosed with hashimotos disease so my dose goes up and down like a window cleaners ladder. you do really need to give it four weeks, then get a repeat blood test, if you are being underreplaced, your thyroxine will go back up and you will feel the benfits a lot quicker than when you were initially diagnosed (it can take 3 months initially to feel better), the only thing i would do though is ring the surgery and ask what your free t3 and t4 was because sometimes although the tsh is normal, you can still have a t4 at the lower end of the scale suggesting that although your body is priducing plenty of thyroxine, its not actually circulating it as well, this often happens to me.if this is the case, then you have an argument to stay on your original dose.
over replacing is not good for your heart so its important that you take the right dose.

thanks so much SC

I will ring the lab that took my bloods and ask
if they do say the t4 is low then should I go back to my GP and suggest I go back on my original dose?

I am so anxious about it as I was extremely ill with new babies and small kids for so long and I am terrified of going back to that state when I know I can be well. I am also cross that if this is a misdiagnosis of my dosage then it will have stolen 2 months at least, what with one month't trial till a test and at least a month to get my levels back of my life when I had been feeling so well and able to accomplish so much on the previous dose. Sorry to rant but I just want to be well and be able to be the best mother I can to my kids. I was so shockingly shite when I was ill.

Suzy, my mum was diagnosed with Hashimoto's Disease nearly 20 years ago.

She has been fine for quite a long time now but I do remember what she was like when her dose levels where changed; she would be very anxious and twitchy (especially arms, I think??) for at least a couple of weeks, but quite often more like 3 or 4.

I will speak to her in the next day or two and ask her a bit more about it. (although obviously SC is doing the science bit!)

Take care.

really???? your mum got the arms twitches too????

SW-if the t4 is at the lower end of the scale, for example 9-10 then you defintely have an argument to stay on your original dose, o think the reference range is 9-20, i know that when i was pregnant, i was getting readings(tsh) of 1.2, but my t4 was only 10, so my dose wasnt adjusted,the difference was too that i was being treated by an endocrinologist during pregnancy as opposed to a gp. i was on 200 mcgs during pregnancy.

I was diagnosed with hashimotos about 6 years ago. My dosage of thyroxine is also up and down. While i was pregnant my dose went up to 150. Ds is now 7 months and my dose has been reduced to 100. I have never been on such a low dose. I to have tingling in fingers and toes, and have done for about 2 months. I had no idea that it could be related to my thyroid.

Suzy, I have just spoken to my mum and it seems she had a different version of Hashimoto's.

Anyway, just for the record: apparently she initially was diagnosed as being overactive (she had a goitre, weight loss, anxiety etc) and was considered untreatable and ended up having surgery which removed 95% of her thyroid gland.

Following a biopsy she was diagnosed as having Hashimoto's and therefore now underactive and was put on 50mcg of thyroxine. This was increased by 50 mcg every couple of months until she finally ended up on 150mcg, adn she has been on this dose for quite a few years now and feels fine.

My mum says she remembers that each time the dose was increased, she went back to feeling how she did before the operation; she described it as a mild version of St Vitus' Dance, and would only last for a few days each time.

I know this doesn't relate to your situation but she fully understands your anxiety of not wanting to go back to suffering those awful symptoms. My mum now gets very anxious when she has to have a blood test.

Is there any chance you may be having panic attacks ? (which can cause similarish symptoms and can be linked to your anxiety remembering how ill you were)

Anyway, go back to your GP and discuss how you are feeling - ASAP!

Best wishes, let us know how you get on.

(PS, bear in mind that my mum was first diagnosed 20 years ago, and had the op 15 years ago)

peanuts and mercy, thanks for that info

I have made an appointment for exactly one month from the first blood test and I will find some time to understand my readings of each thing as spacecadet suggests and then be more informed at my next gp visit. I will also be asked to referred to an endrocinologist just because this is a semi paid for health system over here and everyone who is anyone has a specialist.
I have decided to go back up to 175mcg whatever the gp says and then get looked at indepth by the endo.

My friend says she gets tingling when she takes iron supplements so that could account for the tingling too, I also had my iron level tested at the blood test and have been supplementing.

Thanks for all the advice

hello
I am going for blood test tomorrow and doc's on Firday to see if the dose is right.

I notice that the doc has only asked for TSh and T4 to be tested, do you think I should demand T3 testing aswell?

I have noted my symptoms all month and tbqh they have greatly improved over the last week but the main ones are the dizziness, the tingling, the feeling of being horror-stoned occasionally and mild brain fog, although these things are only episodic. I am not tired at all.

So, my fellow 'roid sisters, any final advice before I go and see the doc - sorry for so many questions but I have only been onthe right dose for 15 months and only diagnosed for 2.5 years.

TIA

I know this is dull and self indulgent but would anyone be kind enough to bump it til the afternoon crowd get on, I have to go to bed now, thanks

I am hypothyroid and was first diagnosed after the birth of my ds now age 9. One of the first symptoms I noticed was extreme muscle fatigue i.e couldn't lift my arms on the shower to wash my hair, couldn't hold a pen to write.

My dose of thyroxine has varied between 200mcg at the highest to 100mcg at the lowest. Currently on 125mcg. My understanding is that it takes at least a week for change to take effect.

Get another blood test soon if you feel bad - its a miserable feeling when its wrong.

hello tealady, thanks for that

so what do we think about the T3 reading, is it necessary?

the best tests to have are tsh and free t4 and t3, these are an interpretation of how much thyroxine is actually travelling round your body in shortened terms, however, most gps will only test tsh and will only check free t4 and t3 if tsh is abnormal, however, its sometimes a good idea and some gps will do it, to check t4 even with a normal looking tsh result.
basically though, get your free t4 checked and your tsh..and if they are both abnormal you will probably find that the lab will order additional free t3 and overall t4 testing..in most cases, labs will not perform the t4 and t3's unless the tsh is abnormal, although a boderline tsh and lowish free t4 can also be indicative of hypothyroidism so if you are having both t4 and tsh then that will be enough for the gp to decide whether or not to alter your medication..sorry for the waffle!

not at all, thanks so much for the waffle!, I have bumping this to try and lure you to waffle spacecadet!

I just rang the lab and they say they can do the t3 for me with just a phonecall for confirmation to the doctor.

Now I know you are not a GP ( actually I don't, are you??) could I post my TSH and T4 results here for you to have a look at? I will still go to the GP, you are not solely responsible

no problem, feel free to post your results, im not a gp! although im a ex nurse, however i was diagnosed 6 years ago and i guess that being a nurse at the time made me research it a bit more than most people would, thats great that they will do the t3, i normally have to make a fuss just to get the t4 done!

well it's only partially government subsidised over here, one does pay a fee on the spot.

right, my TSH was < 0.03 and T4 21 and that was after 15 months of feeling great on 175mcg.

Previous results from 10 months on 150mcg were TSH 0.4 and T4 20 and that prompted the GP to put me up to 175mcg

When I got to Aus my first reading was TSH 9.53 and that was after 4 months of 100mcg

well looking at your previous 2 results, the i can see why your gp wanted to drop the dose a bit, your most recent reading suggest that your thyroid was bordering on poosibly becoming hyperthyroid as the tsh was right at the bottom end of the scale and the t4 was high, the result before that was spot on, the t4 was at the higher end of the scale which means that the thyroxine has been circulating as it should in your bloodstream, a reading at the other end ie 9-10, suggests hypothyroid when combined with a higher tsh reading.
your reading when you got to aus was very high meaning that you were extremely hypothyroid, so it looks like the gps have been managing your tsh levels very well since.
you know yourself though what your levels need to be at in order to feel well and quite a lot of people find they need to virtuyally suppress the tsh in order to feel in tip top condition, my levels need to be about 1.3 for me to feel well and i start feeling poorly if they creep over 2.
the higher the tsh reading, the more underactive you are as it means that the thyroid stimulating hormone is working harder to produce the thyroxine you need.

so should say that your gp is probably aiming to keep yout tsh at about 0.4 as it was before and your t4 up in the teens

thanks SC

that is very reassuring to hear you think the GP has been managing me well.

So my tingly wobbly stoned symptoms, which I have to admit are well on the wane now, do you think I should raise them when I see the GP or could they be due to a bit of psychosymosis?

YOu can just say "bog off SW and stop bleeding me for answers" at any poin,t btw

.
i would always mention any symptom to your gp, but it could well have been because you were a bit anxious about dropping doses, which is understandable as i hate dropping doeses and convince myself that i will immediately become underactive!!!