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Fluctuating symptoms
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Fluctuating symptoms

I knew I was tempting fate when I mentioned in a post a couple of days ago that I was completely symptom-free.

I am working towards getting myself adequately medicated - this has been going on since the end of last summer, when I starting struggling after 10 fairly event-free years on Levothyroxine.

My symptoms - variously air-hunger, a feeling that my heart is labouring,  tingling feet, sweats (possibly post-menoapuse) and fatigue come and go, not just on a daily basis but from hour to hour. Is this normal? The air hunger is worst first thing in the morning and subsides as the day wears on. Could this be anything to do with the time I take my meds? I'm only on T4 and I thought it was very slow acting.

Incidently I had my heart checked out just before Xmas, so although it feels like it's struggling, I am fairly confident it's a thyroid issue.
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649848_tn?1357751184
I had breathing problems when I was really hypo too; at one point, the breathing problems even led to my being dx'd with COPD and put on Spiriva for that.  Spiriva is outrageously expensive (no generic) and my insurance wouldn't cover it.  I kept asking my doctor for something less expensive and he kept saying "nothing else works this well".  At first, the Spiriva seemed to help some, but after a few  months, I couldn't tell a difference.  Finally, because I was no long willing to pay $300+/mo for a medication that didn't seem to be doing anything, I quit taking it. By then my FT levels were higher and I was beginning to feel better, all around.  I haven't taken Spiriva for nearly 2 yrs now (quit smoking nearly 5 yrs ago), and the only time I have breathing issues, is when I over exert.

I also suffered (still do) from the sweats.  My doctor had blamed them on menopause for over 10 yrs after I had my hysterectomy.  I finally told him that menopause doesn't last that long, so they had to be from something else.  He, reluctantly, agreed with me, but never did try to find a cause - this was prior to my hypo dx.  I'm still not sure what causes them, because even when my FT4 was 1.8 (0.8-1.8) and FT3 was 3.8 (2.4-4.2), I had them, particularly, during the night.

For the past few years, particularly, the last 2 yrs, I've had some very stressful things going on and I'm beginning to wonder if this has something to do with adrenal function, as much or more than thyroid.  

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798555_tn?1292791151
I'm a guy, so I cant answer all your questions. But
I will say that when I've had those symptoms, it was while I was hypo, and labs (free T3) reflected that, (TSH) did not. Why you cant fine tune with TSH.

The hard to catch your breath was scary, as I have been very fit all my life, so hard breathing was no normal for me. Now its completely gone and my tsh almost looks hyper, but free T3 / T4 are OK. I get heart palps when hypO too.
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Avatar_f_tn
I suspect my T3 is still very low. It's heartening to read of your similar symptoms - it's a lonely and scary place sometimes. I forgot to mention the palpitations - they come and go too.
Like you, I'm pretty fit and walk about 8 miles a day with my ever-eager golden retriever, so realistically, I'm sure if there was anything amiss with my heart (that the last work up might have missed), I wouldn't be exercising like I do.
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1841872_tn?1324669689
I would say  all that you mentioned is Hypo and something is not balanced.
I am post- menopausal and when I get heat sweats it is more of a imbalance then related to the menopause. (At least with me)

Are you taking any T3 medication?
And what is air-hunger?  When hypo I am just hungry all the time!
Mia
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Avatar_f_tn
I just assumed the sweats were connected with the menopause, although come to think of it, they only started again last year when I began have all the thyroid-related issues.

My bloods back then suggested that I was having a conversion problem and I was put on T3. For reasons that remain unclear, my Endo started me off on 20mcg a day - everything was great for about a month - all symptoms disappeared, but then I became hyper (and boy, I so don't want to go back there again). I gradually stopped the T3 as I now don't even seem to be able to tolerate even 5mcg. Because I had reduced my T4 when I started on Cytomel, my last bloods show very low FT3 and 4. I'm now slowly increasing the T4 again, but not quite sure where I'm going to go from there. Hope to talk to my Endo again next week.

Air hunger - for me - is a feeling that I'm not getting enough breath somehow. I keep trying to take big gasps of air, but it doesn't feel adequate. Others here have described a similar problem. It usually accompanies a fullness in my throat. Oddly enough - and this is the only silver lining in this sorry state of affairs - I lost the extra 20lbs I'd been carrying  when I hit the menopause and I find my appetite is  slightly decreased when my thyroid is playing up.
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Avatar_m_tn
Here's a link I think will interest you.

http://www.drlowe.com/jcl/comentry/breathingproblems.htm
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Avatar_f_tn
:-) - I read your post just after I'd stumbled upon the very same article. Many thanks.
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798555_tn?1292791151
Sweats can be from thyroid too, Very, very, common. Us men can also get them at night from hypo and hyper.

The not being able to get enough air was scary. I was snowshoeing up a hill and thought I was going to suffocate several times. Not kidding. It was different than just being out of breath. And I dont have athsma either. That's gone, hopefully forever.

I got the full heart sono gram thing (a video), it was in excellent working order, hypo thyroid was to blame. Natural thyroid and magnessium at night fixed it. Do you take Magnessium -citrate,  or glycinate? Magnessium Oxide (most common) does nothing.
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798555_tn?1292791151
"Hypothyroidism doesn't have to be severe to lead to weak breathing responses to increased carbon dioxide in the body"

- from Dr Lows article. Interesting.

More proof that common medical Dr's or Endo's do not know many of the possible hypo symptoms we can get.
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798555_tn?1292791151
Dr, John C Lowe

One of the good ones.

RIP
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Avatar_f_tn
Thanks for the input - very reassuring to know I'm not alone!
I've been taking magnesium for years (Doctos Best High Absorbtion elemental magnesium). I'm thinking that a natural thyroid product might be my next option.  Were you on a T4 only med before? Not sure if I'll tolerate it as I couldn't take Cytomel but I guess it must be worth asking my Endo for her thoughts. I don't think Armour is available in the UK however.

I found Dr Lowe's article fascinating - the more I read the more I realise how desperately ill-informed the majority of our GP's are.
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Avatar_f_tn
Thanks for the input - very reassuring to know I'm not alone!
I've been taking magnesium for years (Doctos Best High Absorbtion elemental magnesium). I'm thinking that a natural thyroid product might be my next option.  Were you on a T4 only med before? Not sure if I'll tolerate it as I couldn't take Cytomel but I guess it must be worth asking my Endo for her thoughts. I don't think Armour is available in the UK however.

I found Dr Lowe's article fascinating - the more I read the more I realise how desperately ill-informed the majority of our GP's are.
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649848_tn?1357751184
I had breathing problems when I was really hypo too; at one point, the breathing problems even led to my being dx'd with COPD and put on Spiriva for that.  Spiriva is outrageously expensive (no generic) and my insurance wouldn't cover it.  I kept asking my doctor for something less expensive and he kept saying "nothing else works this well".  At first, the Spiriva seemed to help some, but after a few  months, I couldn't tell a difference.  Finally, because I was no long willing to pay $300+/mo for a medication that didn't seem to be doing anything, I quit taking it. By then my FT levels were higher and I was beginning to feel better, all around.  I haven't taken Spiriva for nearly 2 yrs now (quit smoking nearly 5 yrs ago), and the only time I have breathing issues, is when I over exert.

I also suffered (still do) from the sweats.  My doctor had blamed them on menopause for over 10 yrs after I had my hysterectomy.  I finally told him that menopause doesn't last that long, so they had to be from something else.  He, reluctantly, agreed with me, but never did try to find a cause - this was prior to my hypo dx.  I'm still not sure what causes them, because even when my FT4 was 1.8 (0.8-1.8) and FT3 was 3.8 (2.4-4.2), I had them, particularly, during the night.

For the past few years, particularly, the last 2 yrs, I've had some very stressful things going on and I'm beginning to wonder if this has something to do with adrenal function, as much or more than thyroid.  

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Avatar_f_tn
Oh my goodness - that's frightening to read. The older I get and the more experience I have with GPs (both for myself and ageing (aging) parents) the less confidence I have in them.
It sounds like you had problems for a significant period of time - I must say I do worry that there might be lasting damage to the heart if I don't get it sorted soon.
I find it so frustrating to have to wait six weeks before being able to assess whether a small increase in my T4 med will bring about relief. I feel almost sure that it won't as I'm only edging towards the dose I was oriiginally on at the end of last summer when I started getting these symptoms and my Endo decided to try adding T3.

I've often wondered about stress. My life is reasonably calm (or at least as calm as it can be with two elderly mothers to worry about) but the stress levels and anxiety do tend to increase with the hypo symptoms.
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798555_tn?1292791151
yes, was on t4 many years. Found relief on Canadian Erfa natural thyroid. I think you can get that shipped to the UK with a faxed script.
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