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Thyroid experts, can I ask your advice re upping dose of thyroxine?

(17 Posts)
SirVixofVixHall Tue 21-Jul-15 21:18:13

I have Hashimotos and I am upping my dose of thyroxine at the moment. I had a TSH of 3.8, T4 lower end of range, when last tested. I was on 50mcg and had been for ages, with my TSH slowly creeping up (2.5 last year, 3.2 six months ago).
Anyway GP had marked my results as "satisfactory", but as my iron was lowish, (22) my folate was lowish, and I felt shattered and blankly brain fogged, I went back, saw a different GP and he agreed that I could try upping my dose to 100mcg. I started taking 50 one day, 75 the next (about a month ago, I can't quite remember) then after a week or two went up to 75 every day, then 75 one day 100 the next, and the last three days I've taken 100 mcg each day.
How do you know what is the right dose? on 75/100 I felt more alert mentally but still very tired. Now on 100 I have started to feel a bit anxious as though caffeinated (is this hyper?) but not constantly, and I still feel really exhausted. How long does it take to start to feel well on a dose? A friend said this week that it had taken her three years to feel well after first diagnosis,shock and although some of that was dose juggling, even when she hit a dose that worked she took a long time to feel good. ( My best friend also has Hashimotos and she has been hyper but always feels shattered and dreadful, no matter how much her dose is upped she never feels well, which worries me). I am totally fed up of my life being on hold while I waft about at home in a fug of exhaustion. I haven't been well since having my second baby 8 years ago. I really want to be better, and now I'm taking iron (but maybe need a different type as I can't tolerate the full dose), my B12 was fine as I take a supplement. They didn't test VitD but I am taking that.

Clarella Tue 21-Jul-15 22:25:49

How long have you been on 100?

It's generally a matter of waiting about 6-12 weeks before testing due to the long half life/ body recovering, aiming for Tsh of 1 or just below and seeing how you feel. As gp is supposed to consider how you feel the 12 weeks allows for this, but I must say it really can take much longer.

I suspect as you've been under for a while it will take a while - low thyroid does affect muscle strength so it will take a while for this to recover and rebuild (I'm speaking from recent experience).

You can also go up and down a bit in my experience as it settles.

Definitely take a good high dose of vit d a day (I've been really looking into this including the upper daily amount) and ferritin really does need to be around 70+. I only recovered properly when my ferritin was above 70.

To be honest I'd probably have gone from 50 to 75 and tested bloods after 6-8 weeks then adjusted slightly higher if it was still around 1.5-2 / and or I still felt crap. I've been hyper / over replaced in the past and full of energy, recently experienced hyper and the exhaustion plus insomnia.

Sadly it does take ages to build up in your system so you need to have had a consistent dose for a good 6 weeks before testing.

I feel your frustration; recently been through it myself, including low ferritin.

Clarella Tue 21-Jul-15 22:36:17

Sorry I saw 3 days.

Could you stick to 75/100 for a few weeks and then get a test? It sounds like and might be a really good level for you.

My bloods were perfect at the end of May (inc ferritin) but I'm still recovering as had been suffering for so long. I'm literally trying to build up stamina and strength slowly, as if managing chronic fatigue or recovering from an extreme illness. So it effectively took 3 months to be on my current dose to get a test that was satisfactory (Tsh 0.5) and 2 months after this result im starting to feel better; I think it will take another couple of months to build my self up further. A lot of it is weakened muscles which don't just ping back; they have to be challenged and used. Getting better ferritin will help this as iron helps muscle growth and repair. Take vit c too with your iron; also will help generally.

SirVixofVixHall Tue 21-Jul-15 23:06:05

I could stay on the 100/75, but the only improvement on that was a slight lessening of the brain fog. Other than that I felt the same, completely exhausted, although less palpitations which I get a lot when too low. My gut feeling is that I need to be on at least 100, possibly a bit more, but the GP didn't give me any guidelines for how to go about it other than to get re-tested after 6 weeks. Which is around now probably. I was only on the 75/100 for about a week and a half though.

Clarella Wed 22-Jul-15 06:56:12

Unfortunately you can't really guage anything, from bloods or how you feel till it's been 6 weeks consistent dose at least which is a pita. The only think I've ever noticed which is s good barometer is bowel movements. Too loose and definitely too much thyroxine esp if coupled with not sleeping. But it can take a while to settle - I think half life actually varies depending on hyper/ hypo / euthyroid state - from 3/4 days if hyper to 10. So it's possible to roller coaster a little at first. You may also have had some functioning thyroid (hard to tell) in the mix too.

As I say muscles etc take s while to recover do you will feel fatigued for a while.

Clarella Wed 22-Jul-15 07:03:33

You could get the test to see- if already Tsh is low eg 1 - 0.3 perhaps the 75 or 75/100 is ok, then stick to that for 2-3 mo and retest. If not, just go on 100 for 2-3 mo and retest.

My gp was v firm this time about waiting 3 mo to see how I felt. Earliest blood results can be seen at 6 weeks.

How is sleep and bowels?

SirVixofVixHall Wed 22-Jul-15 11:08:25

Sleep and bowels ok. Maybe slightly less tired today, normally I would like to go back to bed pretty much as soon as I wake up and lately I've been falling asleep on the computer! Or if I sit down to read a book. I'm stressed today though as my doggie is in the vets having a GA, so that might be why I feel more awake!

Clarella Wed 22-Jul-15 11:40:54

A friend recently started thyroxine with similar Tsh scores to you but was on lithium and recently had a miscarriage, plus symptoms. They started her on 50 two months ago (so similar increase) and she's been through a sleepless hyper phase, though when tested her Tsh was 1.4. She has since started feeling ok.

The buzzy feeling could be unrelated things - stress etc - and as I say it really does take months to really feel better. When I had a thyroid med wobble when very fit once it took 6 weeks to start to feel better after a dose increase but my baseline fitness level was really good. If your body is struggling anyway after a long tecof feeling shit it takes longer.

Definitely get your ferritin up as well. Make a decision to stick to one dose and test in a min of 6 weeks. And good luck!!

Clarella Wed 22-Jul-15 11:43:24

Thyroid stuff can be very complicated with reverse t3 somehow doing things so it just takes a while for equilibrium to be reached. I actually think it's as much to do with the body regrowing differently, including the brain.

It's shit and people not in thyroid worlds just don't understand.

Clarella Wed 22-Jul-15 11:56:20

I have just re read your post - I think we have to treat this phase of recovery a little like someone with chronic fatigue. Pacing and accepting you can't yet be the same. I had a long time on not quite enough as well as low ferritin - I feel my body wasn't healing and I slowly really lost lots offs me and had awful joint damage.

I saw an nhs physio as was dx hypermobility syndrome but tbh the damage a lack of thyroxine did was worse (then I was on too much for a while and this did damage too). She taught me a lot about the CBT approach to chronic fatigue and ME, which is veryuch about pacing and setting small goals.

But tbh I really haven't been well since finally getting my good blood results until the last week or two. I've been slowly slowly doing more, though do struggle when my pelvis flares )appear now to have a very bad back after such weakness / bad posture) I did a phased return over theast 5 weeks, but now off as a teacher and aiming to actually start body building / working out.

Thyroxine (lack of) affects so many areas so subtly but mostly strength and stamina and cognition. It causes dementia in the elderly and I can see how.

I have often felt thyroid people could do with a type of CBT/ advise manual to help cope with the mh side of dealing with these symptoms long term as well as drs and others who don't understand. But it's very similar to the things available for CFS/me sufferers.

I also think I found it easier to recover from blips, dose changes etc pre children. It's been so much harder with a little person to look after.

Pleasemrstweedie Wed 22-Jul-15 12:32:24

We are all individuals, that is the first thing. We all know someone who has not been well since diagnosis, but there are many reasons why this might be and none of them mean that this will happen to you.

The second thing is that you will always have issues until you have your “ducks in a row” and ferritin, folate, vitamin B12 and vitamin D are all optimal. Also, you might have raised your dose a bit too quickly as well. Thyroxine works slowly and you’d normally wait four to six weeks before changing dose.

If you’re feeling a bit edgy on 100, you might want to go back to 75 and stick on that dose for a while to allow everything to catch up.

The question now arises, what is happening to the thyroxine you are taking? You could really do with getting stable on one dose for six weeks or so and getting a full test. That way you’ll know whether you’re converting or not. I know I found early on that my body didn’t recognise the thyroxine I was taking, so it was all sitting in my blood and showing as above range on a test, while I still felt hypo. That settled down within about three months and, on the same dose, my FT4 was mid-range and I was looking for an increase.

SirVixofVixHall Fri 24-Jul-15 10:04:54

I might stay on the 100/75 then, and see how that feels over six weeks.( The GP wanted me to go from 50 to 100, I just did it in stages myself as I am really prone to palpitations and I didn't want to have a racing heart as it freaks me out). Or should I just stick at the 100 now and see if I settle down on that? I don't think I've ever been properly medicated. I started on 25 and was on that for about a year, then up to 50. I have had hair falling out/breaking, constant brain fog and tiredness, joint pain, general aches and pain etc. I am also almost certainly coeliac so there are issues there too. I break out in hives all the time. And I've put on two stone in under a year. I've gone from a fit whippety slim, mentally quick and generally speedy person 10 years ago, to a slow, sluggish fatty who mixes words up and is always in pain. My dds have never known me really well, although my elder one remembers me being much more active and doing more stuff with her as it was after dd2 that things really went downhill. (My TSH was 8 when I was pregnant but I wasn't put on thyroxine or tested for antibodies for another 5 years).

SirVixofVixHall Sat 25-Jul-15 17:17:34

Also I've always been a night owl, but now I am really tired in the mornings. I take my thyroxine first thing. Should I try late at night instead?

Pleasemrstweedie Sat 25-Jul-15 18:51:10

You can try that. When I took levothyroxine I always took it before bed. It worked for me.

SirVixofVixHall Sat 25-Jul-15 18:54:33

I never know if I'm converting as they only ever test T4. No one has ever tested my T3. Are you on NDT now MrsTweedie?

SirVixofVixHall Sun 26-Jul-15 16:54:40

One extra question- the upper register of my voice seems to have been affected (I'm a singer), this could be a hormonal peri-meno thing but could also be thyroid, will it improve once I get the right dose?

Pleasemrstweedie Sun 26-Jul-15 21:27:13

No promises, but no reason why it shouldn't.

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