Thyroid Disorders Community
Can't Breathe!
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Can't Breathe!

I am wondering if anyone is familiar with the symptoms I have been experiencing. I have had hashimotos for 4 years I still have not found my "correct" dose; I seriously believe that it does not exist; and I am doomed to swing hyper and hypo forever. However my most concerning symtom right now is that I feel like I can't breathe! I've noticed the past few weeks I have been startled out of my sleep because I need to take a breath! I can't get any sleep, last night I slept for maybe 3 hours. I feel like I don't want to eat because it makes the shortness of breath worse. I just had a TSH test done and it was 6 so they increased my levothyroxine I'm pretty sure this will help but in the mean time I am going crazy becasue I can't get any air. Help!
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Avatar_m_tn
Hi ,
What is your current dose ?
How did you reached it ?
How much time have you been taking it ?
What is your last lab numbers ?
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Avatar_m_tn
It is frequently difficult to get to the proper dosage during the period of Hashi's when the thyroid glands are still being destroyed by the antibodies.  When you speak of swinging between hypo and hyper, are you basing this on symptoms, or on TSH levels?  You only mentioned TSH so I'm fearful that is the only test that is being used to determine medication.  If so, that won't work.

TSH is a pituitary hormone that is affected by so many variables that it is inadequate as a diagnostic by which to dose a thyroid patient.  At best it should be considered as an indicator, to be considered along wtih more important indicators, which are symptoms and the levels of the actual, biologically active thyroid hormones, free T3 and free T4.  FT3 is actually the most important because it is four times as active as FT4, ;lus FT3 correlates best with hypo symptoms.  TSH does not correlate very well at all with hypo symptoms.

If you haven't been tested for free T3 and free T4, then that is something you should have done now.  Depending on your doctor, you may have to insist on testing for both.  Some resist, and some refuse, because they don't believe it is necessary.  Believe me it is.

In my opinion the very best way to treat a thyroid patient is to test and adjust FT3 and FT4 levels with whatever medication is necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptoms relief should be all important.  Frequently we hear from our members that symptoms relief requires that FT3 is adjusted into the upper part of its range and FT4 is adjusted to at least the midpoint of its range.    

Here is some good info for you.
http://www.hormonerestoration.com/Thyroid.html
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Avatar_f_tn
Have you had your ferritin levels checked? I just had mine checked and my level was 21. I've also had a very hard time breathing lately and have read shortness of breathe is a symptom of low iron.
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370638_tn?1298299511
8 weeks ago I was on 75 mcg four times a week and 50 mcg three times a week. I had been on that only a few months. Began complaining of muscle pain, weakness, out of breath. Got a blood test TSH was 2.6 t4 was normal (I can't remember) but my t3 was 71 which I was told is low; "but not low enough to be causing these symptoms" the dr. said. He ran celiac screen, folate, b12, vit D; all were normal except vit D it was 25 which is "marginally" low. (I think normal is like 30-70 on vit d). Anyhow the dr. increased my levothyroixine to 75 mcg everyday as well as started me on 1000 IU of vitamin d3. I initially felt great after starting the vit d3 after about a week I became very hyper, based on symptoms, couldn't sleep, headache, itching all over, eyes hurt when I would move them, heart pounding. Called the dr. twice that week no return call. I was forced to lower my med myself (probably would have died waiting for them!) I started taking just my 50 mcgs daily, it was still too much; the minute I would swallow my thyroid med in the morning my face would instantly get burning hot, palms hot and itchy, bottom of feet itchy. I ended up cutting the 50's in half for a few days. PA finally called back said to "keep doing what I'm doing." next day got blood work. My tsh on Monday was 6.1 (I can't remember what the ft4 was but also high) I have insisted on the ft3 test because I am extremely sensitive to any change in thyroid med or any med for that matter. dr. says "ft3 in unreliable." PA called me after last blood test said to up my dose of levothyroxine and lower the vit D. I am terribly frustrated;  now my tongue feels fat(noticed indentions from my teeth), ringing in ears, but  main problem is that I feel like I can't breathe especially if I lay on my back. Does anyone else experience this feeling of needing more air when hypo? Or has anyone heard of this?
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370638_tn?1298299511
I will ask about ferritin level.

Thank you for the website and info.

I think I'm going to consider adding t3 and lowering t4.

does anyone here take t3?

I am concerned because I am very thin and very sensitive to the meds but perhaps it would relieve this breathlessness.
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1013194_tn?1296463081
Do you have a goiter, i had this when my goiter was enlarged? Mainly the waking gasping for air..
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Avatar_n_tn
when i was going toward hyper i was breathless alot. when i was hypo tsh was 9 and didn t notice air hunger too much. i think the symptoms just blend in.  i think if you get the ft3 and ft4 you can get a better picture of your situation.  if the dr won t order it then find another who will. good thyroid docs here on this site.  i hope you feel better soon.
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Avatar_m_tn
You can't imagine what I have been through during the journy of getting the correct dose !

So what you need is to rebuild the levels again ,gradualy,with small steps,and you should perform blood test 3-4 months after increasing/reducing the dose .

This process is important ,and we all with hashi have to go through,its part of the treatment ,it's part of balancing the attacked gland ,for me it took 2.5 years !

You will not feel well untill you reach the proper dose for you,dose is calculated weekly,so what you were  taking was 450 mcg/week and now 175 mcg/week,
if you take 50 mcg/week less/more than you need ,you remain symptomatic.

The 6.1 is meaningless since you didn't gave it enough time ,to what dose did he increased your dose ?

I experienced the need for air and difficulty breathing when I was hypo.
Buttom  line is that you need to have and endocrinologist,repeating the blood test after 3-4 months that you on the same dose  .
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798555_tn?1292791151
The grasping for air does seem to happen to quite a few. Its actualy two different symptoms.

-Some report that it feels their lungs just arent getting enough air, but not choking..

-Some have felt a sudden choking feel in the throat with or with out thyroid pain. They wake up gagging on nothing but a swollen air passage it seems. I have felt this during the Hashimoto 'swing' at times.
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370638_tn?1298299511
I don't have a goiter. It just feels like I have to concentrate to breath; It's like my body is forgetting to breathe. Thats the best way I can explain it.

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370638_tn?1298299511
I feel your pain. I have not been on a stable dose since I was dx over 4 years ago.

I was half way stable before they prescribed the vit d3; for some reason it really affected me and I became hyper.(the vit d3 does wonders for my mood though the difference for me was amazing) The dr's office didn't return my phone calls for a week when I became hyper. I was forced to lower my dose myself. And of course my levels just shot up and now I am hypo and can't breathe.

As of March 3rd I am taking 75 mcg times 2 per week and 50 mcg times 5 per week.

Thanks you for the advice.
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Avatar_m_tn
OK,you should take this dose each day the same dose at the same time on an empty stomach, and repeat the blood test in 3-4 months ,if you do blood test in 6 week you might see that the numbers reacted to the dose but you might not see that they rise again indicating a need for dose increase .

The best thing is to have a thyroid endo ,who knows how to increase your dose properly rather than going hypo and hyper all the time ,it would be wise to tell him the problems you face when increasing , and the journey you have been through.

By the way ,adding T3 should be the last option,once you stable your TSH properly,and if you remain symptomatic ,then you might want to try natural thyroid replacement or adding/combining T3/T4 .

don't try to rush it ,you will just loose time for vain .
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370638_tn?1298299511
Thank you for the great advice.

I know it is very important not to rush this thing; it is sooo hard for me not to do that. But I am going to try very hard; maybe I can finally feel better.

It's just so frustrating, especially because I am soo sensitive to the meds. For example at the beginning of all of this (4 yrs ago) dr's started me on 50 mcg levo. After 8 weeks the dr. called in a panic saying my TSH was "barely detectable" and to stop levo and come in so they can check my heart. Then went to 25 mcg levo; after 8 weeks my TSH was 9.6! It's just been a nightmare.

I'm going to try very hard 3-4 months!

Thanks again!
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Avatar_f_tn
Try to hang in there Im going through the same thing with swinging hyper to hypo. Changed levothyroxine dose 7 times since October 2009. Went hyper on 150mg, then still hyper on 125mg, then extemely hypo on 100mg, then still hypo on 112mg, So now i'm on 125mg again for two weeks. Then I'm suppose to increase again to 137mg and hopefully stabalize.I'm some what nervous because Im starting to get anxious and panicky on 125mg. I can feel my heart rate increasing at times, short of breath, and off balance/dizzy feeling. But I definitely need this increase and I have a better understanding of the side effects with increasing meds so I'm going to try and stick it out for the next 6 weeks-8 weeks for blood work to see if I'm getting closer and then hopefully my body will just adjust on its own. I know it really ***** but hang in there! You are not alone! My vit D is also low so I'm starting vit D supplement  tomorrow. Hope that helps my mood and does not make more hyper.
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Avatar_f_tn
I had the breathing problems and it did'nt matter what dose I was on , or what I was on, I don't know if this would make any difference in your case but I had TT on Feb 4th and after I woke up from surgery I noticed right away I did not have any more problem with the breathing nor swollowing. My doctor told me that the nodules were pressing so hard on the windpipe and throat that it was causing me all the problems I had with the breathing etc. I would say in my case this must of been so as surgery certainly changed it all for me and I have not been faced with this problem since.  Just a taught.
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393685_tn?1325870933
The symptom of hard to breathe can be swung with both hyper and hypo symptoms...

on the hypo end - which I think you may be is - inflammation start to form in the lungs - the little vessels start to swell and that can trigger asthma like symptoms...

on the hyper end - there really is no swelling  - but the hyper creates a symptom like hyperventilating so you are really breathing harder and the lungs get tired of over preforming.

With Hashi's automimmune - there may also be swelling directly with the thyroid called thyroiditis... if that is happening then the windepipe can be pushed and breathing can be difficult too. Nodules can cause this too. Thyroiditis is NOT goiter related at all.

Hashi's can be very hard to regulate. The antibodies have no rhyme or reason at times and can swing up and down frequently... Its hard for the doctor and the patient to go through...

To eliminate the Hashi's theory - you should read on suppression - regardless if there are causing - or not causing this issue... The thyroid will still die off - but the attacks will not be so hard on you... Read about selenium.. and antibody suppression.

Vit D - is not a vitamin... its a hormone.... and a very good one... There is research out there confirming low vit D can be a major culprit of thyroid disease... Seriously, if you look at the Vit D intake recently - it makes perfect sense your meds probably weren't right after starting that. Really - when starting any new supplementation - the body will react and things ( meds) may need tweeking. Its common law within the body.

One thing and you are of dozens in this cycle... You must not based your thyroid condition soley on the TSH... Reading btwn the lines I can bet you are not getting the FT3 and FT4 thyroid tests... Most likely total labs that do nothing...

My advice is for you to read - read - read about reading ratios of those frees and track your symptoms after you get those labs.... then look at the TSH - but last...

In your condition with the little stated... You sound like you are not regulated at all... I don't believe you are in the norm as many Hashi's patients find with the FT3 - a bit higher ( in 3/4 range on the reference) and the FT4 mid/ low on the scales... If you want to look at the TSH - then utilize that around a 1.0 or a tad below that - with those ratios of frees and you may find relief.. again suppression is key also on those antibodies.

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Avatar_f_tn
Also, I took the Armour (60mg) twice a day with 12.5 cytomel in am
I am supposed to take the compunded 123 hors apart.  I wonder why I cannot take  120 in am, but I guess that would only get me through 12 hours.  I will be talking to dr. soon and wanted to be informed as she charges by 15 min increments.
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Avatar_f_tn
OOps..first part did not post
I am new to this forum, but a longtime thyroid patient
had Graves...radiated ...on synthroid for years and did not work
put on t3 time released due to reverse t3
eye started twitching after 4 years...too much t3
newest Dr had me on Armour, then Thyrolar back to Armour  Since it was available again (I wanted natural) but then I could not breathe..an inch of thyroid is still there after radiation..maybe it kicks in..felt like thyroiditis after reading about that.
take D3 and took adrenal rebuilders
Pharmacy compounds plant derived t3 and t4 for me now
best 2 months ever
I take 12.5 cytomel and compounded t3/t4 (9/38) in am
compounded t3/t4 (9/38) 12 hours later

I will be talking to Dr. soon and want to be prepared.

After blood tests maybe I will not need the cytomel
they do a ratio of total T3/Reverse t3
NP says it is the same as Free T3
ratio should be 10 - 12?
I am wondering if I have to take meds two times in 24 hours or if it can all be in one dose...maybe not because of the T3 in the compound?

Thanks for all of the knowledge all of you have!  Even the questions are helpful!
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Avatar_m_tn
I have no experience in Armour ,compound or reverse T3 ,
maybe some one else can help you !
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798555_tn?1292791151
Your situation is unusual. You had Graves (hyper) and now the doc thinks you have or had Reverse T3 after your thyroid was radiated?

I think you need to have a somewhat working thyroid gland to have Reverse T3.

Armour has a lot of T3 in it, to take additional T3 is a lot in your body.

Taking any dose of T3 all at once will give you incredible short lived (4 hours) energy. That why many take T3 or Amour in the morning and late morning or afternoon. Taken at night can keep you awake.

If you need more info, please make your own posting and title - others will answer.
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Avatar_f_tn
Thank you so much!  I was not quite sure how to post my own so I tagged on to these comments!
I think you are so right.  I have felt all along that the remaining thyroid was still acting up!
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798555_tn?1292791151
Many people have the radiation more than once.  

Usually RT3 is in people that still have there thyroid and its treated with T3 med only, no additional T4 hormone replacement at all.

Yellow box on top is for posting a new question.
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Avatar_f_tn
I don't have much of a goiter, slightly enlarged. What sometimes takes my breath is my large isthmus. My last endo didn't even tell me about it, but my new endo showed me my isthmus is over 2 X the normal size on the ultrasound. No wonder I've been choking!

Barb from this forum told me to take selenium once a day. I take 200 mcg daily. It sure has helped. As does Motrin. When the swelling is awful, I take Tyleno III, but only for extreme times.

:) Tamra
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Avatar_f_tn
Hi, I had a hard time with shortness of breath also. Before I was diagnosed with Hypo, I was using my inhaler more and more, I thought that I was having asthma problems. However, my shortness of breath or air hunger as I've seen it in many symptoms of hypothyroidism, went away once I started my Armour. Your TSH was pretty high, maybe that is what is triggering the shortness of breath. I also had trouble sleeping, insomnia with my hypo symptoms too. I hope your higher dose helps. Have you considered Armour? Good Luck.
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Avatar_f_tn
I also wanted to add that maybe your adrenals are playing a part of what you are experiencing. Have you ever had an adrenal saliva test? I saw your other post about the muscle weakness, etc. I had those symptoms with my hypo problems also and began having adrenal problems from being hypo for so long.  I added supplements to strengthen my adrenals. It's a never ending battle. Again, good luck.
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Avatar_f_tn
Also, most people with Hashimoto's can't convert T4 to the usable T3, so if you are only on the T4 meds, you might not be getting the help that you need. Your body might feel hyper when the dose is raised, but you aren't getting the thyroid help that you need.
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Avatar_f_tn
Hi JKristina,

I've been dealing with the air hunger issue as of late too(I also wake up at night gasping for air). I'm Hypo, and my TSH came back two days ago at 6.2, My doctor asked me if I had been taking my meds because my TSH was high, and I told her that I had been taking half a dosage due to palpitations but i was working my way back up to my regular dosage of .125 mcg of Levothyroxine.

With the shortness of breath I've also been experiencing extreme fatigue, muscle weakness, muscle pain/spasms, and brain fog. I'm also Anemic, so I'm sure that it's contributing to it.
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370638_tn?1298299511
Anyone reading this post that may be having similar issues please consider natural progesterone cream. It fixed my breathing problem.
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Avatar_f_tn
Can anyone give me some advice, or had anyone gone through this.... I found out a few months ago (November) that i have an overactive thyroid. Dr put  me on meds right away and i had a blood test done a month later, which came back looking great! Dr said thyroid still felt big and told me to keep taking meds and come back in a month. Well i just had another blood test last week and when I went into the doctor, he said everything looked great again but that my thyroid still felt big. So now I have to get an ultrasound on it and I'm really terrified. I don't want it to be cancerous. Has anyone gone through this? &btw. I am 22 and have one child. I have also been extremely short of breath. Almost where it feels like I'm gonna stop breathing.
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996946_tn?1411467927
You probably should start a new thread as this one is almost 3 yrs old. That way your question would get a lot more attention.  I did have, and still do have a thyroid nodule that has remained unchanged in size.  My Dr put me on .025 mg of synthroid when I first was diagnosed with the nodule, about 5-6 yrs ago.  I had the ultrasound and then a fine-needle biopsy which was said to be inconclusive.  It has never gotten larger and I do go for an ultrasound every year or two. I don't really worry about it anymore, it's fairly common.  Your shortness of breath could be anxiety.  I would try to relax and take several deep breaths...and make the appt for the ultrasound....believe me, it's no big deal.  Let me know how it all comes out.  You'll be fine!
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Avatar_m_tn
hi this is yogesh , i m on med 75mcg from last 4 months , i am hypothyroid i came to know when on one night i was having difficulty in breathing . but now also i m having  this problem sometimes. kindly suggest uptill when i have to face this horrible exp.
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