Thyroid Disorders Community
New here, please help???
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This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, parathyroid, pituitary gland, thyroiditis, and thyroid Stimulating Hormone (TSH).

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New here, please help???

I'm sorry if I come off as ignorant, but I guess I am when it comes to thyroid issues & treatment. My doctor has prescribed 25mcg Synthroid daily - today is day 3. My test results are as follows... TSH: 3.121 (0.358-3.740uIU/mL), FREE T4: 1.02 (0.76-1.46ng/dL), FREE T3: 2.00 (2.30-4.20pg/mL)... I've been doing as much research as I can & it's all so overwhelming. I'm assuming that I have hypothyroidism, but I don't know if the way I feel is because of my thyroid, the fact that I have iron deficiency anemia, or unrelated to either/both. I have no energy, have aches & pains in my arms & legs, chest pain & palpitations, numbness & tingling in my hands & feet, am very sensitive to hot & cold temperatures & worst of all, find it almost impossible to take a satisfying deep breath even though my oxygen saturation is always 95-99 when checked. I've had chest x-rays, a chest CT scan, leg ultrasound to check for blood clots, EKGs & all I ever hear from the doctors who've seen me is "everything looks good". Everything is NOT good. I can barely get out of bed long enough to use the bathroom. I feel like I'm dying. I'm taking Ferrous Sulfate for the iron deficiency, Synthroid & my doctor gave me samples of Cymbalta yesterday to try because he thinks my difficulty taking deep breaths is because of anxiety. The only reason I have any kind of anxiety is because I can't take a deep breath & feel like I'm dying. I'm not a hypochondriac, this is very real. Please, can anyone help me make sense of all of this??
24 Comments Post a Comment
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1756321_tn?1377771734
My pulse oximeter read false normal with severe bradypnea (due to severe hypothyroidism) because of the high carbon monoxide in the blood.
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Thank you for your input, Red_Star. I'll ask my doctor if that could be a possibility.
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2 doses of the Cymbalta was more than enough for me. I've taken myself off of it. I'm not depressed & the only reason for any anxiety in my life is because I feel like crap & don't really know what's the cause of it all. I'm continuing the iron supplement & thyroid med, still experiencing the same symptoms. Should I feel a difference soon?
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649848_tn?1357751184
I'm sure that the reason you feel the way you do, is because you are hypo and have to give the synthroid a chance to work. It takes 4-6 weeks for it to build and stabilize in your blood, and may even have to be increased.

Do you know if you have Hashimoto's? If so, your thyroid function will continue to decline and you will eventually be totally dependent on the medication.  You should ask to get tested for thyroid antibodies.  Those tests are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TGab).  You need them both, because both are markers for Hashimoto's and some people have only one or the other, while some people have both.

Some of your lack of energy, the tingling/numbness, etc may be cause by vitamin B-12 deficiency.  You should also get that tested.  B-12 deficiency can cause the most debilitating fatigue I've ever known.
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Thank you for your comment, Barb135. I haven't been tested for Hashimoto's or any deficiency besides iron. I will be asking for the tests your mentioned. Can you think of any others that may be beneficial? I really appreciate your help.
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649848_tn?1357751184
Yes, there are others, but those are the main ones.  If you have to choose between those and the ones I'm going to tell you about, now, choose those above....... absolutely insist on vitamin B-12..

You might want to get tested for magnesium......low magnesium levels can cause horrible muscle/joint pain.  You should also get tested for vitamin D.  Deficiency of vitamin D mimics hypo symptoms, and if you don't feel like getting out of bed, you probably aren't getting much sunshine (unless you sleep outside; I used to be able to...... LOL).  

Did you have an entire iron panel?  Or were you simply tested for iron?  You should have an entire panel, including ferritin, which is a storage protein for iron. The panel consists of four tests. Serum ferritin, serum iron, total iron binding capacity, mainly, the capacity of the blood to transport iron and transferrin which is also a protein that binds iron. Some panels might also include a couple other parameters.

All of that said, it might help you to know that I had a considerable period during which I had severe shortness of breath, when I was really hypo.  I even had a complete pulmonary work up to make sure everything was okay.  I was actually diagnosed with COPD and put on Spireva, which helped for a while, but eventually did nothing...... What helped most?  Getting my thyroid levels where I need them. I haven't taken the Spireva for about 3 yrs, though I do go through short periods where I might have shortness of breath.... I know I've either gone hypo or I'm not getting enough exercise.

I also had periods of anxiety when I was hypo; partly because of being hypo, but that was exacerbated by a situation I had no control over, which is now resolved and my anxiety only returns when I go a bit hypo or there's something stressful going on.

I suffered from severe fatigue for many years and every doctor I saw wanted to put me on antidepressants...... no thank you.  I did go on an anti-anxiety med for about a year, because of the situation mentioned above.  I've been off it for some time now, for over a year.  Most of my fatigue was caused by untreated Pernicious Anemia, some by anxiety and some by thyroid.

It can be a complicated process and it's rarely so cut and dried as to be "thyroid only".  Our bodies are pretty complicated and when one part doesn't work right, it can throw off the whole thing.  Having 2 or more things go wrong at the same time, can cause everything to go into a tailspin, because doctors, typically, want to look at one thing only and when they find, they prefer to stop looking.
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Avatar_f_tn
My previous doctor was the one who started treating me for iron deficiency & he did so based only on Emergency Room CBC panel results. My current doctor also recently tested for 3 additional values (Iron, TIBC & Iron % Saturation)... Iron: 19 (range 60-160), TIBC: 428 (range 250-350), Iron % Saturation: 4.4 (range 13-59). As far as I know, I haven't had a Ferritin level test done.

In researching IDA & Thyroid disorders, it's come to my attention that Hypothyroidism has been said to cause anemia. My doctor has been blaming my iron deficiency on my menstrual cycle, for which I'm seeing a GYN on 7/1. It seems that no matter how much iron supplement or iron rich food I consume, I stay deficient enough to contribute symptoms, yet not quite low enough for a blood transfusion.

I've also read that there may be a link between thyroid disorders & gallbladder disease/stones. I had my diseased, stone filled gallbladder removed on 4/30.

I haven't been able to convince my doctor to do any type of pulmonary or cardio testing yet. Despite my telling him I can't take a deep breath, he says my lungs are fine & it's anxiety. According to him, the chest pain, tightness & palpitations I experience is because of anxiety. I'd really like to know how someone can have CONSTANT anxiety. If either the thyroid or anemia is damaging my heart & lungs, I'll never know at this rate.

I'm terribly sorry that you've been unable to breathe with ease. It's an awful, scary feeling I wouldn't wish on anyone. I do wish that some of our doctors could feel what we feel for just a moment though. Maybe then they'd understand & be more willing to help us get better instead of telling us that test results look good, so end of discussion, nothing is wrong.

I will request all of the tests you've mentioned. I hope that he will agree. I'm a self-pay patient, I feel I should be able to get any test done that I request since I'm paying for them myself rather than an insurance company.

Thank you, again, Barb. You are a wealth of knowledge & wisdom my dear. I truly appreciate what you do here to help others who are struggling & suffering.
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649848_tn?1357751184
I'm not convinced that hypothyroidism "causes" anemia; I haven't researched it, but I'd almost say it would be the other way around, because iron is necessary for the metabolism of thyroid hormones.

Hypothyroidism can also cause weird menstrual cycles.  I, too, have heard that there's a link between hypo and gallbladder issues, but again, I haven't researched it and/or seen any scientific studies.  A lot of what we read is anecdotal.  My gallbladder was removed in 2005; I'd had attacks for many years and didn't know what they were.  A large gall stone was found by accident via a kidney ultra sound.  The only hypo symptom I had in 2005 was fatigue, which was later traced to pernicious anemia.  I wasn't diagnosed with hypothyroidism until 2008, so I can't make a connection for myself.

Shortness of breath is quite common with hypothyroidism.  Actually, yes, one can be in a pretty constant state of anxiety.  When we have something going on with our body that doesn't feel right, we become anxious about it and afraid that there's something really serious going on.  The more afraid we get, the more anxiety we have, even when we don't particularly "feel" anxious.  The only reason I was sent for pulmonary testing is because I had been a smoker for about 40 years and had recently quit, when I had the shortness of breath (hence the COPD dx, which turned out to be wrong).  In my case, it was a combination of anxiety and hypo; I'd guess yours is too.

With your numbers as low as they are and your TSH above the maximum recommended level of 3.0 (in spite of the lab's outdated reference range), I can see where you would have a number of symptoms. If you are self-pay, you should, not only, get the tests you want, you should be able to get a referral to whatever doctor(s) you want; or even call and check - not all doctors require referrals; that's often an insurance company requirement.

What is your current dose of synthroid and how long have you been on it?

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I just started Synthroid on 6/20, so today is only day 6 & my doctor started me at 25mcg & said he will re-test in 6 weeks.
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649848_tn?1357751184
Yes, I remember that, now.  It's quite likely that your dosage will have to be increased at the end of that 6 weeks.  It's good that your doctor started you lower, because that reduces the chances of an adverse reaction.  

Hopefully, you will see some small improvements soon.
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Avatar_f_tn
Lord, I hope so. All I can do at this point is lie in bed with a window a/c unit blowing directly in my face as I struggle to breathe. I don't know how much more of this I can endure. I called my doctor's office this afternoon to report that I've discontinued the Cymbalta because I don't like the way it makes me feel & his PA was very hateful, snappy & critical, almost as if it directly affected her when I declined a different medication & stated that I'd prefer NOT to take any kind of anxiety medication. I guess they feel I may be less of a bother to them if I'm in a dazed, altered state of mind? Even my sense of touch was "different", everything I touched felt foreign & I still have a lingering headache that I hadn't had before I took it. "It's trial & error with anxiety meds" she says. Yes, but it's my body & health you people are playing with. Ugh.
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Avatar_f_tn
I was diagnosed with Hashimoto's when I was in the 5th grade. I had all the symptoms you said you have. I know exactly what you mean when you say it feels like you're dying. I am sure that all the information you're getting IS really overwhelming and scary. But having lived with hypothyroidism my whole life, I can tell you, once you get it under control, it's really pretty easy to manage. Give your medicine sometime to do what it's supposed to and you will be feeling normal in no time.
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Avatar_m_tn
My wife was able to cut her asthma medicine in half after she started getting her thyroid meds closer to optimum dose.

Also she has weird menstrual cycles when she starts to get hypo. In fact it is one of the first signs.

My wife also had acid reflux/GERD which when away along with migrain headaches when her thyroid medicine was closer to optimum.

My wife also had her gall bladder removed.  I'm not sure this was a result of being Hypo but at the time there is no doubt in my mind that she was undermedicated and hypo at the time.

It really makes me angry wheh Drs will hand out anxiety and anti-depressants by the handful on a whim and tell you that it is all in your head. But then resist like the end of the world would come about if you ask for a few Thryoid tests or ask for a starter dose of generic thyroid.

you are only at 37% of the FT4 range and you are BELOW range in your FT3 level.

many people have  found a rule of thumb that your FT4 should be 50% or more of the range AND your FT3 level should be about 66.7% of the range.  As you can see you are WAY, WAY below those levels.  I'm glad they finally started to prescribe a starter dose of thyroid for you.  As Barb said it is a very low dose but starting slow and working up is the best way to go.  But don't expect immediate feeling better. As it takes up to 6 weeks to stabilize in your blood.  Also many people report feeling worse when first starting medication as your body tries to ajust to having hormone again.  But starting out with a small dose helps to minimize that possibility.  I think you are now moving, albeit slowly in the right direction!!!!
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Avatar_f_tn
Thank you for your comment, Kris. It breaks my heart to know that you & others have felt the same way, but at the same time, it's a little comforting to know you're not alone & that others out there have been able to regain control of their lives. What you said gives me hope that eventually, I might just know what normal feels like again.
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Avatar_f_tn
Flying fool, thank you for your response! I'm so glad that your wife has had such good results with her treatment. It's somewhat of a relief to read positive things like this. :) It angers me as well that doctors hand out such meds so freely, yet we have to fight & argue & beg for medication or tests we feel we truly need & would benefit from. I actually hadn't calculated what percentages I am in my lab ranges, but have read that most people feel best where you've said. It's encouraging to know that others, like your wife, do so much better once they reach their optimum levels. I know I probably have a long road ahead of me, but I guess I've just got to try to be a patient patient. Thanks again!
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Avatar_f_tn
when I wasreal low, I had a very hard time taking deep breaths, I couldn't fill my lungs, and then when I would eat, it seemed like my food would fill up right under my lungs and then I really couldn't take a deep breath, I felt I digested really slow. One of the most important thing I learned, was how to take my meds, when it came to eating and taking other supplements. I would take my thyroid pill, then I'd wait 1/2 hr. then I'd drink my coffee, (most likely shouldn't have) then I'd wait 1 hr. to eat breakfast, and then I'd wait another 4 hrs before I take any supplements, If I don't do this, I don't feel real well, seems like my thyroid meds don't absorb correctly. I truly feel for you, I'm almost were I should be with my meds, I actually feel good, but I still have some hypo symptom. But I am so much better, thank goodness, and thanks to all on this site, wouldn't be were I'm at, if I just relied on my Dr.  
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Avatar_f_tn
Did your doctor start you on 25 mcg because of a heart condition?  

When I was first diagnosed my doctor put me on 25 MCG of levothyroxine.  I retested at the 6 week mark with just TSH and she said I was fine.  I was NOT fine.  I told her what was going on and she said it sounds like MS....that was only the first of guesses.  

I don't have MS, or nerve damage, muscle damage vitamin deficiency, fibromyalgia, etc...I spent the next year being tested for all of that. "It is not your thyroid" and "Nothing is wrong, there is no reason you are in so much pain"

Found a new doctor and I also read the on-line .pdf of levothyroxine (Synthroid) 25 MCG is a starter dose for someone over 55(?) with a heart condition.  That dose is only going to make you feel worse.  

My new doctor has me on Armour an NDT (natural desiccated thyroid) at 90 MG.  Armour has all the T's.  Especially T3 which is available to your body within a few hours and really helped me get through the crashes faster!   I don't know if this is the dose I will stay on...I probably will go higher but I am feeling the best here!

On a lower dose my doctor and I found that I develop sleep apnea.  Central and obstructive.  That is a whole other issue I am learning about currently.  Because the symptoms you describe also mimic sleep apnea too.  

I found several doctors that don't agree with Armour and I run - not walk - from their office when I hear that or anti-depressant for the pain. Armour has gotten me where I am today - which has been a long painful road.
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Hi , sorry to hear you are so sick, I have ben feeling exactly like what you have described these last 4 days, I have Hashimoto disease which is attacking my thyroid and made me hypo, I found this out 1 month ago and have been put on 50mg levothyroxine (Synthroid) 6/6/13, at first I was fine until now. Feel I am getting worst, but have read that these are all symptoms of this illness. Will be going to the doctor next week to take TSH test again to see what is happening.
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649848_tn?1357751184
25 mcg of levo is NOT just for people over 55 with a heart condition.  It is very often a starter dose, to allow the body to get used to having hormones that it's been doing without.  It's very common to start at 25 mcg then work up at 6 week intervals, until symptoms are gone and labs are good.

astunally - it's not unusual for symptoms to worsen or for new ones to appear, when first starting on thyroid replacement.  You need to get more than a TSH test...... you need to ask for the FT3 and FT4; if your doctor refuses, you should run, not walk to a new doctor.  Any doctor who treats thyroid conditions, based solely on TSH will keep her/his patients ill for a very long time.
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Avatar_f_tn
I am just relaying how I felt and what happened to me after starting such an extremely low dose. By no means did I mean to offend anybody. I am mostly commenting so she isn't kept on that dose after the six weeks.  Even her Free T's will fall into their low but normal ranges and she will still feel terrible on 25 mcg.  

It takes 1000 micrograms to make a milligram.

I agree that starting to high is just as irresponsible.

I just hope that through all of our experiences ~good and bad ~her and her doctor can lead her on a better path.  With all of our experiences she can refer back to the posts - if she is experiencing the same symptoms as us and not make the same mistakes.  That is why we are all still here - paying it forward.  Knowing how miserable and how different thyroid troubles can put us through... :)
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Avatar_f_tn
Thanks Barb, I have found another doctor who I'm told is much better, will see next week when I need to review my meds . I was also told I have anemia , but she didn't want to treat it as she said my thyroid meds would make all my symptoms go away...............3 weeks on I'm still waiting and feeling worst, was wondering if I had something else .
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649848_tn?1357751184
Thyroid meds will NOT make symptoms of anemia go away.  If you have Pernicous Anemia (B-12 deficiency), then you need to supplement B-12; if you have iron deficiency, you need to supplement iron.  Of course, thyroid meds will make a lot of the symptoms go away, but anemia can also mimic thyroid symptoms, so without treating everything, you will never get well.

I'm glad to hear that you've found a different doctor. One who refuses to treat anemia will keep you ill for a very long time.
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1756321_tn?1377771734
I've been anaemic on and off for decades. That mean thyroid! :)  

Thyroid Sexy facebook page has some interesting info about hypothyroidism...

"People with hypothyroidism can become anemic because of hypothermia. Most red blood cells are made in the bone marrow located in the proximal portion of the long bones of the body, because that is where temperature is highest. However, when body temperature drops, even these areas have difficulty producing red blood cells, even in the presence of sufficient iron and vitamins. On examination, the red blood cells are found to be normal in size, shape and hemoglobin concentration. There simply are not enough of them. Anemia contributes to fatigue."
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649848_tn?1357751184
Not familiar with "Thyroid Sexy", but I took a sneak peak on FB; doesn't seem a whole lot different from what we have here..

I'll have to research the idea of becoming anemic from hypothermia...... there are different types of anemia and if each one isn't treated adequately, the patient will not get well, because thyroid hormone does not contain either B-12 or iron......
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