Hi I have been visiting this site for awhile, but this is the first time I have posted. I haven't seen anything regarding what I am experiencing, but am wondering if it is related to my hashis/hypo condition. I was diagnosed with hashis in September this year. I am still in the med adjustment era, and am currently on Synthroid 100mcg. I have been experiencing for the past 3 days a hunger for air. I CAN'T take a deep enough breath. I feel hungry for air constantly, not just with exertion, but constantly. This is the fourth episode I've had with this over the past year. It has lasted 1-3 weeks each time. The first time I went to walk-in and was told it was just gas (I knew better), the second time I had spirometry performed, as well as a chest CT which both were normal. This was before I was diagnosed hashis although around the same time I noticed my goiter. My family doc told me I was having panic attacks although I didn't feel this was accurate. (He also tested my TSH at this time per my request 4.5 perfectly fine he told me no chance my thyroid was off-I am now in the care of an endocrinologist-after my TSH hit 15.) He(my family doc) prescribed Innopran (a beta blocker)for my breathing problems, which I didn't take because I thought if it was bronchospasm it would worsen my breathing troubles. I had my TSH tested yesterday for my 6 week check after dosage increase, but won't have results till monday. Are breathing problems such as I've described commonly associated with hypo patients???
I'm a patient but would say the shortness of breath/craving more air, can definately be a hypothyroid symptom because everything in your body runs low and sends signals of needing more of everything that fuels it.
Your TSH not being brought down below a 4.5, indicates your thyroid hormone levels were never at adequate levels either. A 4.5 is way above that recommended by Thyroid Specialists (aace.com), to make patients feel better and not retain hypo symptoms. Most patients don't feel well until their TSH is below a 2.0 and many need it below a 1.0.
It is alarmingly common for Dr.s to not know this and I'm not sure why more priority has not been given for a massive information campaign, to udate and inform all Dr.s about this, with hypothyroidism being a very common disease (28 million-plus Americans and possibly half again that many undiagnosed!). A TSH just barely in-range, will keep hypothyroidism from progressing to worse but as far as symptoms, a patient will only break-even.
I too was told a high-normal TSH (4.95) was "perfect" and after INSISTING on a dose increase, another Dr. got my TSH down to 3.0 but still I retained some symptoms of hypo. I finally found a Dr. who tested my levels after giving me yet another dose increase and my TSH was then @ "1.44" however, my Total T-4 at same time was "6.4" Low (range 6.5 to 10.5) and my "TSI" was "6.0" Borderline-low (range 6.0 to 11.4)!! My latest dose increase now has my free T-3 in upper half/almost top of normal.
I'm obviously a patient needing my TSH to be considerably below 1.0! Your new Dr. hopefully will check more than just TSH, plus will understand that TSH will be more suppressed with proper dosing that raises thyroid hormones to optimal levels.
Bottom line; It's a very strong bet, you're still hypothyroid!!
Thanks for responding. The endocrinologist I am seeing has already told me that most patients feel their best with a TSH of about 1 and that he doses by both TSH and symptoms. So I am on my way..It just seems to be a long road to feeling well. I am interested to see what my TSH is since I had it drawn yesterday while I am having these breathing problems. I am hoping that when I hear from the Doc that I can discuss adding T3 to my treatment...hopefully Armour, as most patients who take it seem to have much greater relief of symptoms. I am only 26 and have a receding hairline with very thin hair that has fallen out throughout my head. I have NO energy ever and am a mom to 4 kids so it's not fair to me or to them. The only improvement I have had with symptoms is no more joint pain. Ughh I know that it is possible to feel better so I am optimistic despite my current health status.
That sounds like a Gold-Nugget Dr., hold on to him/her tight! I am a patient who is doing better on Armour than on synthetic and you could very possibly be too! I believe you have much better days ahead.
I'm new to this site and I'd like to say to i-feel-awful that, I FEEL AWFULL TOO. I've been 8 months with almost the identical symptoms as you have. I was diagnosed with hashi 3 years ago and have had intermittant bouts of shortness of breath, chest tightness since being treated. Up to 8 months ago it was just a come and go thing, just mildly annoying a few times a year for a few days at a time. But last march It became continuous and almost unbearable. I felt as if I could not get enough air, I couldn't take a deep enough breath with out yawning, a chronic tight cough, and just felt exausted by the end of the day. I work at a hospital, so I had a blood gas done a full PFT, ekg, Chest x ray, my doc ordered blood work and a cardiac echo. All came back normal. I was on 12.5mcg of cytomel and 112mg of synthroid. With out my MDs ok, I quit taking the cyto for a few days and no change. I went back on the cyto and decreased my synthroid in half and after a few days I finally had some relief, although to this day I still have very mild SOB. I just found some literature on cytomel that says that I may not have given it enough time off the cytomel for the symptoms to abate. It also specificly lists chest tightness, SOB, and decreased ability to exercise. That's me!! Synthroid only lists SOB as an infrequent side effect. So I'm wondering if the cyto isn't the real problem, but lowering the thyroxin it may have helped the overall problem. I'm going to ask my family doc to dump the cyto and up the synthroid next week, and I've got an appt with an endo in april. Good luck to anyone else who has this same ****, I certainly feel for you.
I also work in a hospital. In fact I am a respiratory therapist who deals with respiratory disorders day in and day out. I understand anatomy and physiology. I don't think my problem is actually with my lungs due to the normal CT,spirometry,PFTs. I am glad to hear of someone else who describes the same symptoms. I actually found some literature on the internet that gave a few reasons for this particular problem including (1)respiratory muscle weakness including the diaphragm(Hypothyroid myopathy), (2)phrenic nerve impairment (which controls the diaphragm), and (3)decreased central respiratory drive(just think if being hypo can create such a "brain fog" due to decreased thyroid hormone in the brain-it makes since that it can wreak havoc on your respiratory drive as well.) I found this info at drlowe.com in case anyone is wondering.
I too had the exact same experience. I found out in August that I have Hashimoto's, that was after a year of extreme fatigue, body aches, and brain fog, just to name a few symptoms. My heart was skipping beats but my breathing was not effected. My shortnes of breath started after I had been on the Synthroid for 3 weeks and continued off and on from there. I went to a new dr 2 and 1/2 weeks ago and the first thing that he did was switch me to Armour (purposely picked an md that was also a homeopathic dr because I knew that he would be more likely to try armour). I'm feeling better than I've felt in years. I can breath again, every day gets a little better. Apparently syntroid has this effect on lots of people. My new dr added omega 3, magnesium and vitamin c to my meds, and I have to say, something is finally working. If I had it to do all over again I would have found a different dr sooner.
I was told all the same things that everyone else was told about their breathing and had all the same tests.
That's a funny coincidence. I'm also an RT. I also thought about some type of diaphramatic weakness, even gillian barre syndrome. I also was thinking of some unknown exposure to asbestos. That's why I had our PFT guy do a full study with DLCO. I was 100% or over on all my predicteds, and I can spin a NIF meter like an airplane propeller. I think the the major symptom with me is the feeling of chest tightness, almost as if my lungs feel as though they're swollen, I don't wheeze but when the feeling is bad, a tight cough accompanies it. My MD initially was thinking reactive airway disease (which every good RT knows is just a cop out for "hell if I know what's the matter with ya!!") Anyway, I got no relief at all from any bronchidialators, so as far as I was concerned that poo-poos the RADS diagnosis. I'm still banking on the cytomel card, because something isn't right, and I really have a strong gut feeling that it's not me. I was wondering if anyone else had had any similar problems with cytomel, because one article found on the internet was from a body builder that was using Cyto to cut up for a show and wound up with symptoms close to mine. Unfortunatly we only have 3 endo guys in our area, and I'm waiting for my April appt. Hopefully he can shed more light on the problem than my family MD. In the mean time I plan on weaning off the cytomel after I discuss a plan of action with my doc next week.
Y'all take care.
Thank you for your suggestion. I'm pretty certain that it's one of these two thyroid meds. I'm a relativly athletic person, and I know what I'm capable of on a day to day basis. Doctors want to treat you like your sick. I don't feel sick and I don't feel like I have a sickness and it's not in my head. Docs don't want to believe that you can actually have an adverse reaction to a med. My doctor says that I shouldn't be having a problem because these are two relativly "benign" medications. I'll certainly suggest Armour to the endocrine guy if the adjustments we make up to the time I see him in April aren't successful. I wish we could just say to hell with it I'm not taking this stuff anymore. But then I remember what a lethargic babbeling slug I was before treatment.
Well Now, I have found this so very interesting (as usual) I went to my dr 3 weeks ago telling him I was finding it very difficult to take a deep breath and I could not shake the feeling of being out of breath. So he did a chest xray told me I was fine my shortness of breath was due to the fact that (quote) "I had gained so much weight"(he really made my day with this comment :o( ) (I have gained 55 pounds over past few years) I have hashi and am hypo. My ENT had just put my on 25mcg of cytomel twice daily 2 weeks before I went to my family doctor. I told him I was taking the cytomel. (I also take 100mcg of synthroid) He said the cytomel would not cause shortness of breath. Hmmm.. I am really having my doubts about my dr. I have always just loved him in the past but my last visit really put me off. If I sound upset, I guess I am just needing to vent! sorry to dump on you nice folks. Also, does it seem strange that I started the Cytomel with 1 pill the first day and then went to taking 2 times daily. What I have been reading is that most people seem to start off with a lower dosage. I will say that this past week or so I have notice that my shortness of breath is better maybe I am getting used to the cytomel. THANK YOU ALL FOR LISTENING
I have just a bit of sympathy! This story is SO common to hear - for my entire life, I was underweight, even after having 3 children, I only weighed 115 lb at 5'6" tall. Then I began what my doctor decided was menopause. For 2 years, I took HRT, had no periods and only gained 5 lb. Then I quit smoking, and became hypER. It took 7 months to get that diagnosis, though......the end result of that was I had RAI to "kill" my thyroid. I went very hypo and gained 50lb in 3 months! My endo discussed the "relationship of diet and exercise to weight", and my GP just laughed at me! Yes, laughed! I wanted to smack him, but didn't.
So, I (and millions of other hypO women) know exactly how you felt!
Ok well my endocrinologist just called with my TSH results from Friday. TSH 0.6. So I explained to him that save for the relief of joint pain, all other symptoms persist. I have extreme fatigue, mental fog, hair loss, and now breathing problems to name a few. So he said that all must be from something else besides my thyroid! Excuse me? So now that my TSH is 0.6 he won't do anything else and he suggests I see my family doc to figure out what is causing all of my symptoms that are NOT THYROID RELATED. Ridiculous! Oh he also told me that Armour thyroid is GREAT-for pigs only, and that he won't try it. The T3 tests are useless according to him. One thing is for sure..I'll be looking for a new Dr. now. I am NOT going to waste my time
feeling like **** and just accept it. Does anyone know of a good doctor in the Southeaster Wisconsin/Milwaukee area? I'm in the market for one.
I have Hashimoto's Thyroiditis and I also have shortness of breath. I am still in the process of getting my meds regulated. When they need to be increased, the shortness of breath gets worse and I also get heart palpitations. It is good to know that these can be symptoms of hypothyroidism.
I too have terrible problems with shortness of breath, and it seems to happen when my meds need to be increased and my tsh is going higher, right now its 2.5 i am hashi/hypo and I know it needs to be lower... but the shortness of breath seems to be a irritating symptom to say the least!!
I hope someday ppl will not have to beg and plead with their dr.s for help, my daugher who is 14 is also hypo. I do not want her to suffer the way I have and the way most of us have!!
I wish I lived somewhere in Fl besides BFE north central fl and could find a good doc I will NEVER give up. But sometimes its so hard... you feel good for one week outta 3 whooo wee yheeaa haaa...... I wanna feel good again like I used to I am 41 and know there is alot of life to live and I will fight to get what I need and find a doc who will do it for me and more for my baby girl so she does not have to get as bad as I have...
I know it takes patience... but prevention is the cure in her case..
take care all
I've been experiencing the shortness of breath, heart palps, overall air hunger. I feel miserable day-in and day-out. I was diagnosed hypo (TSH 36) a little over a year ago and within two months of being on synthroid, had what I can only describe as a panic attack.
I've had about three more major panic attacks since and have been testing my TSH/T4 every two months or so. I was on 75mg synthroid for most of the time (original doctor wouldn't increase it even though my TSH was around 4-5). New doctor increased synthroid to 100mg but it took my levels too low. I just tested at 0.06 and had a really scary experience two weeks ago. I was home alone and my air completely cut off (felt like choking) -- my husband rushed home and by that time, I was breathing again but now I am really SCARED. Some days it's so bad, I just don't want to "speak" -- it takes too much out of me.
I know this isn't psychological - I'm not depressed, just want to feel normal. The only plus is that I ditched my first doc (who wouldn't listen to my symptoms) and feel more in control of my health. But I still feel like **** and have no hope of relief.
My endo also tested my insulin, testorone and told me those levels are normal but my LH/FSH levels are off, meaning I have PCOS. I'm normal weight, no major acne or hair growth on weird parts of body. Some Minor hair loss on top of head. I'm not willing to go on the diabetic drug endo said would help PCOS. Can't imagine adding THOSE side effects to what I have now.
I can't live like this -- my husband is a saint, taking care of me and the house and luckily I'm not working right now...but I feel hot, palps and lack of air all day long. It's horrible and I feel exhausted at night, even if I've lazed around all day.
I live in Northern Chicago suburbs, so if anyone has any advice or good docs they can recommend - please pass info along. I will do my best to offer any support to those who need it. This has been a difficult year as I felt FINE before starting synthroid and MISERABLE since "treatment". Seriously, I had NO health problems prior to diagnosis and this so-called treatment, except for minor fatigue and horrible cramps once a month. But, I'd happily go back to that if I could. I only went to my doctor because mom/sisters all have thyroid problems and figured I should get tested.
Well I think it was the cytomel that has been killing me for the past year. Asked my family MD to ditch the T3 and up my levoxyl to .112, and have continued to feel better over the past two weeks. My energy level has improved and the shortness of breath is barely noticeable and continues to lessen. Hope it's not a fluke.
One good thing about family MDs vs. an Endo is that at least my family MD will go along with most anything I suggest that seems reasonable. Some Specialists think they know what's good for you wether it makes you feel good or not.
Everybody is very different. One thing that works for one person may not work for another, and all of us are prime examples of that. Evidently everyone on this site has gone from frustration with their doctors and situation to educating themselves. I think that we can be our own best physicians assistants. I hope this course of treatment continues to work for me, if not I'll keep on "suggesting" treatment options, changing doctors and studying until something does.
I hope and pray that you all can find what works too.
Hello to everyone. This is the first time I have posted to this site, but in looking for some answers to my symptoms, I have read posts from so many that have same issues as me. After the birth of my daughter 20 years ago I was diagnosed with Hashimoto's Disease. It took years to get me regulated but finally success with symthroid .2mg. I took this for years but last year during a check-up my doctor said my thyroid levels were a bit high. I had no symptoms at that time but had been dieting and for the first time in my life had been successful. I lost 75lbs. then instead of feeling better I began to feel awful. At one point my TSH level was 12.5, my medication was reduced to .150mg of synthroid, in October 2005 my TSH waas 6.5, then in December my level was 4.5. My doctor says this is normal, but I still experience anxiey, nervousness, some times I can actually sleep 5 hous at night other times I just seem to spend the night resting. My arms go to sleep at night, my weight loss quite, as a mater of fact I have gained back 30 pounds while still being very careful with what I eat. I also have found I have to watch for periods of low blood sugar throughout the day, but in the morning I have days were it is over 6 (after fasting all night). I have also started to experience shorness of breath in the last few days. This morning I went for blood work, so should get results in as few days. This morning out of frustration I didn't talke by synthroid. I'm at a pont where I'm trying to help myself but I don't know if I need more or less medication. Tahnks for listening any suggestions are wwelcome.
When your TSH is high your actual thyroid hormones are low...
TSH stands for thyroid stimulating hormone. When your actual thyroid hormones T-3 & T-4 are low the pituatary sends out the thyroid stimulating hormone to, of course, stimulate the thyroid to produce more thyroid hormones for your body. which means your medication usually needs to be increased to make up for the low thyroid hormones & high TSH.
When the stimulating hormone (TSH) is too low, the actual thyroid hormones are usually high. Which means your medication needs to be reduced to prevent too much thyroid hormone from being utilized.
The AACE (American Academy of Endrocrinologist) now recommends a TSH level of (.3-3.2) I beleive. If I've quoted it correctly.
Dr. Mark (the endrocrinologist on this forum) usually tells everyone to try & keep their TSH around 1 to feel their best.
You may already know this, but in reading your post, it almost sounds like the Dr. did the opposite with you. Letting you go hypo & actually your last TSH is still alittle high. Does your Dr. check yout free T-3 & free T-4 along with your antibodies too. It may give you more of a whole picture where you stand.
I know you are new to this forum but it's good to post the normal lab values with your lab as most normals generally the differ somewhat from lab to lab.
Dr. Mark should be back on the forum soon. He's been gone for a couple of weeks now & he's really good about answering any questions you have. Just post as new question when they start accepting them again. Or ask more questions here if you need too.
I was diagnosed Hyper in March 05. I only knew because I have jogged 3-miles a day for 5 years and a year ago was barely able to jog 50 yards without feeling gassed. Since I am 40 yrs old and would like to have one more child within the next year, I opted for radioactive iodine in August 05. My thyroid didn't quit working until November when I gained 20 pounds (before Thanksgiving) became unable to move due to joint pain and became a huge puffy blob of a human. I finally called my Endo who put me on 100 MCGs of Synthroid at the end of November.
I just had my labs done on Jan 12, and my TSH 3rd generation was 3.578 with a ref range of .400 - 5.100.
I am still unable to run without feeling completely out of breath and like my muscles have no energy. I am also unable to drop any of the extra weight I gained. Just curious if others have experienced this and if trying Armour has worked for them. I (like most others on this site) just want to feel and look normal again.
Your TSH is still at hypo level. The new range as revised by the AACE, is 0.3 to 3.0, so that anthing above that upper end, is still considered hypothyroid. The AACE also recommends a TSH at around 1.0 for patients on thyroid replacement hormone.
So many people are UNDERtreated, due to many Dr.s not knowing enough about treatment guidelines. They will tell a patient a TSH is "perfect", even when it's high-normal.
Also to add even more problem, most labs still use the old TSH range of about 0.5 to 5.0 and are very slow in adjusting to the revised range listed above.
Bottom line; You are undertreated.
If your Dr. is like many, he will never admit this and will likely make you feel ridiculous for suggesting it. This should raise a red flag, to get a NEW DOCTOR.
You could be telling my story! I went hyper, had RAI and gained 50 lb in 3 months! I was on Synthroid for 2-1/2 years and never felt right. Convinced my doctor to try Armour, then found a doctor who knew what he was doing with it. I'm now taking 4 grains of Armour (240 mg), and I have lost 10 lb without even noticing. I feel so much better, can do things again, like cleaning my house. I was never a runner, though, and I still can't run!
Thank you to the two of you who replied to my post. I have decided to go back to my primary care dr. and see if he will let me try Armour. I'll keep you posted. It's good to know others have been in this awful "boat" and can relate to how I feel.
Quick question. I have an appointment tomorrow a.m. with my primary care dr to discuss my TSH levels. I am assuming he will want to do blood work. Should I take my Synthroid in the morning before blood work is done? Or should the tests be run without meds?
My son was recently diagnosed with hypothyroidism, originally he complained of panic attacks and also was getting lightheaded,after the blood tests results came in.. his numbers were extremly high and was put on a generic synthroid med. and was told his symptoms were due to the tyroid problem.... good luck to you!
Just read your post of 1-24 about looking for a good doctor in the Milwaukee area and have a suggestion. Do a search on Mary Shoman's Thyroid Top Doctors Directory and you can look up by your zip code and get the nearest one to you. There will be a message from one of the patients who have been seen by the doctor. I did this in the Salt Lake City area and found a very caring doctor. Not one that tells you to go home and suffer. Can you imagine what would happen if everyone that has chronic fatigue or fibromalgia got their thyroid under control and never saw thos individual doctors again? Also you can sign up with her weekly news letter and get lots of pertinent info. She was a thyroid sufferer and has vowed to help the rest of us get decent treatment. Good luck.
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