Author Topic: On Thyroid Med but don't feel any better??  (Read 2437 times)

March 03, 2011, 11:09:45 am

Hi

I've been on Levothyroxin for the last 18 months but don't feel any better. Anyone else in the same position? Has anyone seen a specialist to help with this?

Still got symptoms of tiredness, low energy, sugar cravings. Am thinking its perhaps an adrenal problem??

Gaby

March 03, 2011, 11:15:59 am
Reply #1
Hi Gaby

Sorry you are feeling rubbish, this is a great site and you will get plenty help.  Do you have recent blood results and lab ranges to share?

Have you have iron etc tested?

Lele xxx

March 03, 2011, 11:35:26 am
Reply #2

Hi Lele

Thanks so much for your reply. Never asked for me exact results when I got tested, just went with with what my GP told me to take! Now realise that was probably a mistake - to be so trusting!

Now take 75mcg per day. Had my iron tested & waiting on the results.

Have heard of Dr Skinner or Peatfield. But not really sure the right way to go......

Gaby x

March 03, 2011, 12:10:30 pm
Reply #3
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Hi Gaby,

Sorry you are feeling so rotten, I have been battling with my GP for over a year to get an increase of Levo because of feeling so rotten, I managed to get a trial increase last month and GP has agreed to keep me on it as it has made a difference, even though I am still not 100% there yet I am much better than I was 8 weeks ago. I think the reason I managed to get it is by coming on this site and learning more, it gave me ammunition and made me feel more confident in asking questions.
I also began to think my symptoms may have been adrenal as my TSH was 0.5 (range 0.3 - 5.0 I think) this is why the GP was reluctant to try the increase. after 6 weeks of taking an extra 25mcg every other day as well as my usual 125 my TSH was 0.46; I didn't feel any benefit for at least 4 weeks butt hen it started to kick in and I found I was sleeping better, the totally debilitating depression lifted and I began to think more clearly, I am hoping that I will improve even more over the next few weeks but if I don't I will be fighting for a further increase.

I just wanted to share this as I felt just as you do, despite having a low TSH that was 'normal' I was still hypo, you really need to find out your last results, when was your last test for TSH? you can ring up and ask for last results along with the lab ranges, that will help you to see if you are still a little hypo. From the sound of your initial post I very much doubt if you have had T4 and T3 tested but it would be worth asking for those too anyway.

Good luck hun

Lin xx flow02

March 03, 2011, 01:19:35 pm
Reply #4
Hi GAby,

You can ring your surgery, or go in and ask, and they should give you your last blood test results. You are looking for TSH, T4 and T3, if they ask you.

You may still be undermedicated, and may need an increase but it's impossible to say without your bloodresults.

xx

March 03, 2011, 01:42:13 pm
Reply #5

Hi

Thank you so much for both your replies. This is very helpful info. I am at the beginning of trying to sort this out & its all still a bit confusing & slightly overwhelming.

Up until now I have been leaving it in my GP's hands & waiting to feel better........

Lin - Thanks for sharing your experience - I did try a trial 25mcg increase of Levo up to 100mcg but I got side effects (mainly heart palpitations) & this made me feel as though I was taking too much, so I stopped after 2 weeks.
Maybe I should have carried on for longer & seen if it helps.....

Can i ask if either of you have had any side effects when you increased the Levo? I had quite bad heart palpitations & felt very jittery when I first started on Levo (even taking only 25mcg per day). I still divide up my pills throughout the day.
 
Gaby x


March 03, 2011, 02:33:13 pm
Reply #6
I always felt bad while increasing the first month was the hardest then things improved.. mainly palps, exhaustion, extreme hunger, etc could be worth it though? If you do increase make sure you get bloods done after 4 wks..  flow2

I increased my dose from 50 to 150 slowly over about a year.

Lele xx

March 03, 2011, 03:05:48 pm
Reply #7
Lin,

So good to read such a positive post. You are clearly on your way to better health! Remind me please your previous dose before you increased?
Do you have any T3 results?

I am asking you because I too increased to 125mg in December and at the moment, I feel calm, serene and I clicked when I read "debilitating depression". I have been sooooo down and for the past two days, I have felt actually better.

This forum is unbelievable!! I am so grateful to have found it.

Gaby, I have increased not long ago and I nearly quit too because of palpitations and shaking. It's all gone away now and I feel better. Then again I'm Hashimoto so maybe it wasn't the Levo, it was an hyper phase.
Cravings for carbs and sugar are frequent. Demands A LOT of will power to keep off the stuff.
If you are found iron deficient, be sure to leave a 4 hours gap between taking Levo and iron tablets.


Krissy
Hypo: April 05 TSH166 - Hashimoto: Feb 11
Life change June 2011: added T3 to my T4
Nov 2012 = T3 only. Life is good again!

March 03, 2011, 03:35:06 pm
Reply #8

Hi

Just found out my TSH level on last blood test was 3.5.

Can anyone give me some advice on this? Is this good/bad?? I'm a bit clueless!

TSH before that was 3.2. Not had my T4 or T3 levels checked before. I'm on 75 mcg per day but feeling awful.

Thank you for any advice!

March 03, 2011, 03:59:24 pm
Reply #9
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Gaby - Hi, I'm not going to be a lot of help but I will echo what others have said about changing dose levels.  I was put on 225 and have been slowly dropping... but even the drop makes me feel miserable.  They want to drop me again to 175 but for now I'm resisting... I'm just starting to feel good again after my RAI and I want to stay like it :)

I'm not expert but I've heard folks on here say that if you're on Levo you should get your TSH down to below 2 even 1... so it does look high.  Also, you'll need T4 and T3 to really see what's going on.

your doctor may well try and tell you that 3.5 is fine... but dont accept that... some folks on here will point you in the direction of useful information to show your GP.

Sorry I'm not much more help but I would say your levels are too high

xx
Had my thyroid out September 2010... they found Follicular Cancer

March 03, 2011, 04:01:04 pm
Reply #10
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Hi Gaby

I'm not surprised you're still feeling rubbish, I'd be just about bed bound if my TSH was like yours  sn17

My TSHneeds to be at around 0.05 for me to feel well, but everyone is different. I see Dr S in Birmingham and my GP prescribes me the 250mcg thyroxine I

take daily.

Is there another GP you can see at your surgery? I had to see 4 different ones before I got a good one  sn22 if you'd like Dr S's details please let me know.

take care  flow2

Gem
« Last Edit: March 03, 2011, 04:02:35 pm by loopylou »

March 03, 2011, 05:23:18 pm
Reply #11

Hi

Thank you for all the advice. My GP considers 3.5 to be in the normal range - but I now realise theres lots more to it than that!

Gem - thank you I've already got Dr S's details in Birmingham.  I heard he often moves people from Levo onto Armour? But you're still on Levo?
Also does he look at adrenals too? Or is it best to consult someone else on this e.g Peatfield?

Thank you
Gaby

March 03, 2011, 08:15:12 pm
Reply #12
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Gaby,
There's a small book on thyroid disease you can buy in the chemist (or online but get the lastest version) called 'Understanding Thyroid Disorders' by Dr Toft and on page 88 it details where the levels of TSH and T4 should be while on treatment, ie. TSH around 1 or under and T4 towards top of the range.

It can be a useful tool when trying to ask the GP for an increase but it would be best to get a T4 and T3 reading if possible.

CCB. x
Ex Forum Moderator
Please take a look at the Thyroid FAQs - http://www.thyroid-disease.org.uk/smf/index.php?board=57.0

March 03, 2011, 09:34:26 pm
Reply #13
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Hi

Thank you for all the advice. My GP considers 3.5 to be in the normal range - but I now realise theres lots more to it than that!

Gem - thank you I've already got Dr S's details in Birmingham.  I heard he often moves people from Levo onto Armour? But you're still on Levo?
Also does he look at adrenals too? Or is it best to consult someone else on this e.g Peatfield?

Thank you
Gaby


Hi Gaby

I take both thyroxine and armour, I get my thyroxine from my GP and my armour separately. Dr S doesn't really address adrenals as he believes they sort

themselves out once the thyroid starts to get better.  I'd be going back to my GP and asking for the T4 test like Cindy says.

Good luck  flow2

Gem

March 03, 2011, 09:38:29 pm
Reply #14
Hi Gaby,

My TSH sits at 0.02, which is slightly below my reference range, which is 0.3 I think.

You do also need your T4 and T3, but your labs may not automatically do them. But you could ask your GP if they have been done.

I see Dr S and I am on Armour.

I did switch to levo and liothyronine for a couple of months, but a change in my brand of levo sent me backwards and I switched back to armour rather than the original brand of levo, to be on the safe side for now while I'm trying to lose weight for my wedding in August.

I think I'll give the levo and liothyronine another try in Septemer though, as I'd like to see if I can have treatment on the NHS and my GP will not prescribe armour.

xx