Has anyone found that they need to up their dos... - Thyroid UK

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Has anyone found that they need to up their dose as they become more active?

Clutter profile image
22 Replies

After 2 years of being almost bedridden and unable to do much I am at last recovering. However, after about an hour of activity/chores I find I'm experiencing shortness of breath, weakness, dizziness and palpitations. I need to rest to allow these to subside. I'm pacing myself to an equal amount of activity followed by rest otherwise I'm totally wiped out and exhausted.

I'm wondering whether it is simply a need to improve my strength and stamina or do people need increased medication as they become more active?

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Clutter profile image
Clutter
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22 Replies
shaws profile image
shawsAdministrator

Clutter, you may need more medication. The clinical symptoms above are also hypo. Have you tried increasing your dose slightly?

I am glad to say I have a lot of energy at present as I am going through a good period (occasionally I have an off day).

Clutter profile image
Clutter in reply toshaws

Shaws, I increased 75mcg T4+25mcg T3 to 100mcg T4+25mcg T3 a week or so ago. I'm trying to establish whether activity metabolises T4/T3 faster than being at rest or whether I'm an 8st weakling. :)

If you have excess energy I'd be glad of your surplus.

soulchick1 profile image
soulchick1

Hi Clutter.

In no way would I claim to have anywhere near as severe symptoms as you. However, I do find that when I'm recovering from an 'attack' I have to build up to exercise very slowly or can get out of breath and commonly dizzy/dragging down sensation in my head.

Dr P. always said to me too much exercise too soon is bad for hypothyroid patients in recovery and suggested walking as an appropriate exercise. I used to play badminton and go to the gym a lot but as I've been unwell I can't do any of it at the moment. I'm just trying to do regular short walks slowly if necessary to at least get fresh air and I stay close to home or my car in case things get bad. I've had sciatica in the last year too so don't want to get too immobile

Hope this maybe helps?

Soul Chick :)

Clutter profile image
Clutter

Hi Soul Chick,

The symptoms aren't too severe and rest for 15-30 mins resolves them. 30mins on and 30mins off isn't too tiring, so it's probably a pacing thing.

While I wouldn't call my feeble attempts at a few chores exercise I guess the principle is the same and I need to pace myself and build up gradually. :)

Aurealis profile image
Aurealis

Hi Clutter, I find that if I get dose right my energy levels revert to normal, so maybe your dose is too low? Just be careful, as I've also found that if I increase dose while not very active, I sometimes increase too high and then feel exhausted by exercise due to strain on heart. Follow your instincts is always best. Good luck!

Clutter profile image
Clutter in reply toAurealis

Thanks, Aurealis. I increased T4 from 75mcg to 100mcg (plus 25mcg T3) 3 weeks ago as I felt like I was running out of steam in the evening. It helped but increased activity over the past week has left me feeling as if the tank has run dry. I've struggled with shortness of breath, racing heart and palpitations on T4 forever but T3 calmed them. Perhaps I should have raised the T3 instead of the T4. Oh for some f***ing stability! *rolls eyes*.

I've been summoned for a meds review, probably because I requested an increase to 100mcg on my repeat scrip. It would be so much better if I could walk in and say I've been doing this, it works for me, gimme 100mcg now, dammit :-D

Aurealis profile image
Aurealis in reply toClutter

It's so frustrating when you have to get yourself well by trial and error and then they don't believe you, and they have no idea how to get you well! Test useless too

Clutter profile image
Clutter in reply toAurealis

My GP is a trainee or registrar and is rated by my endo as one his brighter students from his rotation in the diabetes unit. I'm very comfortable with him, he listens, doesn't treat the TSH and he does believe what I tell him. Poor chap's always playing catch up to how I decide I want to be medicated. Being a diabetes man, I doubt if the concept of exhausting one's store of thyroid hormone by increased activity will have crossed his threshold :-D

I just don't think any doctor can comprehend the effect of fluctuating symptoms when bloods are right but the patient still doesn't feel well, unless they experience it for themselves.

I think regularising my daily regime may help me ie regular meals, good sleep hygiene, a little light exercise/activity. God, I hate having to be sensible :x

in reply toClutter

Hi Clutter. You are absolutely right! I've found regularising has been the key for my well-being. I like to get up around 6am, then have an active morning, late lunch, then I go back to bed for an hour (or two) then up and I'm ok to be on the go until 10. That pm rest makes all the difference. This way, I'm almost as active as I used to be pre-hypo, four years ago. I'm changing my work life to fit into this regime as it works so well. And remember - chores are most definitely exercise... have you ever felt the weight of an arm?! That's several kilos of weight lifting going on! Any arm movement above heart level is going to work your heart and raise your heartbeat - that counts as exercise!

Clutter profile image
Clutter in reply to

Liza, I won't be getting up at 6am. That would be total culture shock :o You've just reminded me I couldn't raise my arms to comb my hair in November. I've come along further than I think. Thank you.

in reply toClutter

hehehe - no early rising doesn't suit everyone! From being nearly bedridden to what you're now doing is brilliant. I can't answer if you need more meds - I haven't needed to up mine due to increased activity but I have needed to re-build fitness slowly and rest periods are really important.

Any movement has the potential to build muscle - slow and careful is the key. I also do basic arm and leg stretches during and after activity including housework to help avoid injury.

Good luck! Liza x

Clutter profile image
Clutter in reply to

Yes, building fitness makes sense. I think most of my weight loss has been muscle. My arms and legs look like strings of spaghetti.

So, I think I should look to gradually building up strength and stamina and possibly increase dose if I plateau or hit a wall.

As ever, discussion on here has clarified things for me. Thanks everyone.

Hi Clutter, have you been tested for B12 folate & iron? Just that these symptoms can be anaemia too. These symptoms are improving with B12 injections. I could get palps and breathless just sitting down, already improved, i'm no longer always aware of my heart beats.

Clutter profile image
Clutter

Hi Helcaster,

Yes, B12, folate and vitD were high in range in January. I stopped supplementing for a month but joint pain and muscle cramps resumed so I'm continuing to supplement 2-3000mcg Jarrows B12 and 5-10,000iu vitD plus vitC, B1, B2, B6, magnesium and zinc.

Ferritin was over range in Nov so I'm not supplementing iron. I've an endo appt in May and I think I might ask him to advise my GP to check calcium, vitD, B12, Folate and ferritin. They seem to take note of what he says even if I have to progress chase a wee bit :)

silverfox7 profile image
silverfox7

I've always said to newbies but its relevant to anyone really and its something I've noticed myself - when you feel rubbish and slightly increase meds the first reaction is that you start to feel a little better and ones first reaction to that is that you start doing a little more and then feel not too good again. Well the small increase that started the wellness feeling was when you were too tired to do much so the increase felt positive but now you are enjoying or want to keep enjoying this new energy you need more meds to maintain it and this plateau then needing more can continue until you reach your optimum dose and your life style. GP's never seem to think like this but they are not experiencing what we are plus I don't think they ever realise how debilitating this illness can be.

Clutter profile image
Clutter in reply tosilverfox7

Silverfox, That's making perfect sense to me. For two years I felt so ill on T4 that I've fought to decrease dose. Now I'm feeling better and want to do more I need more meds to sustain me. This is very helpful and has clarified my thinking. It will help me at my med review with my GP and with the endo in May. I don't think they'll be difficult if I want to raise my dose but if they are I'll just buy online.

silverfox7 profile image
silverfox7

I noticed a similar thing when I started on Vitamin D as well. I had 12 big doses one to take each week and then a maintenance dose. The first time I took the magic pill I felt great and was much more energetic as I could move more easily. The next day the old aches and pains returned. The second week I felt good for 2 days then slipped back and so it continued so I was so glad I had more booster doses than days of the week!

Clutter profile image
Clutter in reply tosilverfox7

I was taking 40,000iu vitD daily for a week followed by 2,000iu daily for 2 months. I didn't notice any immediate benefit at all. I think my skin plumped out and looked better after 4 weeks but I didn't feel any better until about 6 weeks after supplementing. Mind you I was folate def and low in B12 so there was a lot to put right.

silverfox7 profile image
silverfox7 in reply toClutter

Its just so complex isn't it. Hope all goes well with your GP and Endo. Good luck

mactortoise profile image
mactortoise

Hi, I had a similar experience and I think I was so pleased to be feeling better when I started getting more energy that I overdid things. Then I got exhausted and wondered if I should up the dose. It took about three or four months but things eventually picked up without increasing my dose. I had to pace myself and keep resting a lot though. I just decided not to push myself. Now I have a lot more energy but I didn't increase the dose. Just my personal experience but it might be relevant to you.

Clutter profile image
Clutter in reply tomactortoise

Thank you, it is helpful. I'm inclined to think that I need to improve my fitness and stamina and I do realise it needs to be done gradually. It seems contrary for me to consider raising meds as I've been battling to reduce them over 18 months. If improved fitness doesn't do the trick then I will consider meds but not for a while, I think, and after discussion with my endo in May.

Clutter profile image
Clutter

RFU, yes it's sort of intuitive isn't it, but not easy getting the right balance. T3 was raised in April which did the trick but Sept bloods showed FT3 considerably over range so I've reduced T3. Apart from some heat intolerance during the summer and slight tremors I didn't feel overmedicated but hair loss and nail splitting suggest otherwise. I'm hoping T4+T3 doses are right now, certainly feel right anyway :-D

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