I guess this is progress...: Well I'm only a few... - Thyroid UK

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I guess this is progress...

12 Replies

Well I'm only a few days into my full dose at 125mcg thyroxine and I suppose things are better than they were a week or two ago.

My face has more colour in it now than it did - something my support therapist and one of my friends from support group has noted when they saw me today.

Also my eyes don't look as baggy, heavy or dark as they did - also something the two girls picked up. I don't understand that as I still nap a lot during the day and still feel tired when I wake up each morning.

Constipation has completely disappeared - I say "completely" in the loosest of terms as it has not come back since Saturday as opposed to being daily 2-3 times during waking hours. I don't know if it has anything to do with me eating prunes with yoghurt but there weren't tons of prunes in it, only one or two. Not sure.

The aches and pains aren't as bad but the backs of my legs (tops of my thighs but at the back) feel heavy upon walking.

I've also lost weight. Now I know full well it isn't through me eating any less as my food intake has really improved and increased a lot. I'm no longer 8 stone anymore but now 7 stone 11. Not a huge amount of weight lost but I'm worried that the thyroxine is responsible for it.

So yeah - things are better than they were but I'm not sure how. :/

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12 Replies
Charlotte53 profile image
Charlotte53

Really don't know what to say. Except I wish I could lose weight. I also drink a lot. I have to say though never really feel tired and have never had constipation. So guess I am lucky. I only have my dr and consultant to say I need thyroxine . I have the blood tests then they decide what dose I need to be on. I never realised how many people have this problem

in reply to Charlotte53

Hi Charlotte!!

I have to admit I found it hard to accept I was hypothyroid at first because most sufferers find it hard to lose weight. Because I'm petite (size 6/8) associating that with hypothyroidism is pretty far-fetched in the eyes of a doctor. It's still a shock to me now. :o

I did consider seeing an endo about this but my doctor disregarded this in a letter and could only apologise about the thyroxine not working out for me (at the time as I've gotten on a little bit better.)

I've just had my dose increased to 125 from 100 initially I felt great (practically 2 days after I started new dose) now 3 weeks later I've hit a wall and am feeling worse than before :(

Not sure what's going on... I can't keep increasing my dose indefinitely, I have hashimotos I think the more you take it puts more pressure on your thyroid

I'm going to try armour as I take t3 as well anyway x

Mikiviki profile image
Mikiviki in reply to

I have hashimoto's and also felt great. One month into taking t3 as well with reduced levo I also got worse about 3 weeks later. Hashimoto's is so soul destroying. You think you've found the answer then it all goes the other way

in reply to Mikiviki

oh no :o( im sorry to hear that....its so strange but no one has ever told me to decrease my T4....my endo just keeps upping my dose but leaving the T3 at the same...

i am literally losing all faith in the doctors!

Mikiviki profile image
Mikiviki in reply to

Unfortunately they don't have the answer. I have often been advised to lower my dose. But generally I can tell .... 15 years of hashi's I feel I know my body well, but I don't have the answer how to make it better!!

in reply to Mikiviki

Sorry to hear that. :(

You're right about Hashi's being soul destroying. My mum and stepdad seem to be more understanding about it but my grandparents aren't. They accept I've got this illness for the rest of my life and I have to take the meds for the rest of my life, as well as going round to their place if I feel really bad, but I don't feel they understand as much as I thought they would.

A good example would be because I'm currently out of work. I left my job, a job I loved, because of how bad I felt. I would come into work every morning tired and drained. Boss wasn't understanding at all. One day I came in and my left leg felt like a block of ice. It was painful, numb and hurt even when I wasn't using it. The boss told me to "use the lift instead of the stairs". How understanding is that? They didn't even suggest I see a GP at the time, so I came in every day for three days (as that was how long this lasted) with a hot water bottle to fill up and use to put on my leg. I didn't know what caused it at the time but I had a lot of history with muscle sprains/injuries so I put it down to that. I felt so silly walking up and down the office carrying a hot water bottle. :(

I saw a nurse practitioner on a day off about it and she didn't have to get my blood tested to suspect I had a thyroid problem. She wrote a letter to my GP (who I've since left because they failed to diagnose the Hashi's) about considering me to be tested again for thyroid problems and they ignored the letter and refused to test me when I asked about it.

I didn't think I found the right answer when I left my job as all my family thought I'd gone mad - they even said this to me. I just had to take a step back and evaluate what was going on with myself. I knew I didn't feel right - the tiredness and aches and pains were there for a reason and it was something a week off work wasn't going to fix. I started to think about asking for my job back, but when I was diagnosed with hypothyroidism and was told that it was going to take a long time to get better on meds I then realised that staying in a full-time job and juggling with the illness and its effects wasn't going to help.

Also one of the colleagues I worked with was also hypothyroid - she suffered from mood swings, depression and brain fog - and my boss treated her very badly compared to everyone else. Whilst I was still there, waiting to be diagnosed, I thought, if I end up to have the same illness as her and get the same problems, there will always be that risk of me being treated the same way as her. So I left.

I actually bumped into my old boss going back a few months and I told them that I was hypothyroid. They asked me how I was feeling and at the time I wasn't feeling too bad. They then suggested I meet up with them one day for a chat, and I know that if I did that the conversation would probably turn to why I left. I couldn't exactly say that I left because I felt they weren't understanding with me. Or they could've felt bad for taking my problems so lightly. I was a hard worker and loved my job and the team so the fact I left has left many people there scratching their heads.

Thanks

Jo

armour!

im pinning my hopes on that, if that doesnt work i have no idea what i will do x

Give it a little more time and keep measuring how your body feels, and how that's changing.

The weight loss might be a concern, since you are tiny to begin with. 3 lbs in a 'few' days would have me ecstatic! But I can quite see that won't be the same for you!! A good appetite, however, is good for you - providing your body is able to get all the nutrients it needs out of the food before it leaves your body.

Is your doctor or Endo monitoring you? If not and you lose half a stone I'd insist on a consult.

Sympathies with the 'waking up tired'. I'm quite a lot better on NDT, but that and low energy are still problems for me too. Thyroid: the swings and roundabouts, eh?

Hope you continue to feel better.

in reply to

Hi Humphrey!!

Yes, the weight loss is definitely a concern, especially since I've been eating more. I'm not sure if that's down to the Hashi's or Thyroxine however.

I don't have an Endo, only a doctor monitoring me, but they weren't planning on me seeing them again until 3 months later. This was back in August but I've got an appointment with them in just under 3 weeks. I'm not sure what they're planning on doing with me then. I've also got to go back in February next year for my blood test. I don't know what's going on with all of this as surely they would only agree on doing a blood test in 6 months' from the previous result if everything was going the right way?

I went to my last appointment in August for the TSH/FT4 review since starting the Levo and the GP said that the TSH went back down to 4. (normal range 0.27-4.2) He then looked at me weird and asked me if I was taking the Levo as he told me to and I said in a confused way "...yes." He then asked me how I was feeling and I said that I was still very tired and I didn't feel fully better at all.

I guess my slot with him overran slightly as he left the conversation at that and advised me to see how I got on with the 125mcg from 75mcg. I even wrote a letter to ask for an Endo referral but he weote back without saying anything about that. :/

My appetite hasn't really been a hundred per cent. Rewind back to when I was 16 or 17 years old and I ate for 2! Now I only eat because I know I have to, to keep going. I know if I don't eat I'll lose weight and starve. It happened to me back in January this year when I had my goitre and I was eating so little because of the discomfort that I was only just 7 stone. Now I'm 8 stone and have really tried to eat more meat, protein, carbs and starch - anything I know that would keep the weight on or at least keep it on for longer.

Thanks

Jo

Hi reallyfedup. :)

Your reply certainly made me perk up. I felt very tired today but I guess this illness is all swings and roundabouts. :)

Thanks

Good that you've got a doc's appointment in the offing. A 50mcg rise in levo in one go is a lot. It's possible that you're now over-medicated. That would conveniently explain the weight loss. That you still don't feel better might be explained by that too. Thyroids are picky little beggars. Seemingly they behave like baby bear - they like it 'just right'. And, as a number of us have been finding over the years, the symptoms for over- and under-active thyroid can be identical! In three weeks - when you have your appointment - you will know a bit better whether the new dose suits your body's needs. And if you've lost more weight you should certainly mention that. Sounds as if, like most of us here, you're a work in progress!

BTW - not knowing how old you I'll just mention that the foods you fancy can change as you get older, as well as how your body processes them.

My goitre never interfered with eating and when I had it I was eating for 2 (not pregnant!) and losing weight.

Let us know how you go on.

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