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Thyroid Disorders Community
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1053883 tn?1258036400

I need help HYPOTHYROID debilitating

7 Years ago I was told by a Dr that my Thyroid was as bad as a fish out of water.  I had gained 100lbs in 1year and couldn't function as a normal person anymore. I had not changed anything in my lifestyle at all (food intake or exercise) I had severe exhaustion to the point of getting out of breath just washing my hair in the shower (when I had enough energy to have one).  I was achy all over (flu like).  My hair was falling out, even in my  eyebrows.  My nails are so thin they HURT to touch them. My skin and hair is so dry no matter how much water I drink or lotion/conditioner  I use after sloughing like crazy.   My sex drive obviously died (went from 110% to 0%).  My skin on my wrists started to get very thick.  My wrists always hurt so bad that I couldn't bend them.  My memory went to almost gone.  I was put on Stratera which helped a tad, but I hated the side effects.  No matter if I get 6 or 13 hours of sleep, it feels like I've had less than 2 in a 24 hour period.  It could be 95 degrees and I can be freezing cold.  I even get heat flashes when I shouldn't either.  I have always been told that I have a very slow heart rate (like an athlete) but after I was put on Synthroid...I sometimes had palpitations.  I am 235lbs yet my blood pressure is great.  I clear my throat almost every 45 seconds and usually feel like something is pressing on my neck.  When I get sick, it takes so much longer to heal than ever before.  I used to get sick so rarely that I'd brag about it.  I now get a recurring bronchitis 2X's per year.  I have been told by many Dr's that my levels are within normal range.  (3 German Endocrinologists, & my General Dr.)  I am on welbutrin for my obvious depression.  My Levothyroxine sodium (synthroid) dose is 50mcg.  It does nothing for me.  My Grandmother on my Mom's side had her thyroid taken out in her 30's.  My Grandfather on my Dad's side took a small dose of synthroid in his later years after an operation on his thyroid.  

Here are my lab results....TSH  1.23
                                      FT4   0.97
                                 T3 Free  2.88

That is what the Dr calls "normal" while I am on the synthroid that I am on now.  

How is all of this possible?

I am completely disabled due to this.  I can't function as I need or want to.  I need help desperately.  I feel like I'm in a coma...I can only think of what I want to do..but not accomplish it.  



"A goal without a plan is only a wish"
14 Responses
Avatar universal
Heather!!!! GET A NEW DOCTOR!!!!

50 mcg is a beginner's dose. Get that Synthroid upped, and then upped again if you are still having symptoms.

This doctor is treating your numbers (and doing poorly at it I might add considering your low FT4 level) and not YOU!

For many hypos, we don't feel well unless our FT4/FT3 is on the HIGH end of normal. You have some room to go HIGHER!!!

TSH is a pituitary hormone and not as important as treating your FT4/FT3 levels.

Get to a new doc, DEMAND you get some more Synthroid, and once you have optimized your FT4 levels, if you still feel like doo doo, ask for some Cytomel (t3) to raise your threes.

Also, check your vitamin D and B12 levels. Get your thyroid ultrasound to see if you have a goiter getting in the way of your breathing. A gluten free/soy free diet also helps many hypos.

BTW - What is causing you to go hypo? Have the docs ever tested your TGab and Anti-TPO levels for Hashimoto's Disease? If so, this disease needs to be treated aggressively to get the best results.

Take care...
:) Tamra
734073 tn?1278896325
I second this! Your freet4 and freet3 are way to low! Get a new doctor ASAP! They should both line up in the upper 1/2 of their ranges. You are feeling bad because you have been being under treated for your thyroid condition. You have been left hypothyroid by your doctor and you are now, and have been, suffering the consequences for his lack of adequate care! Get the book, Overcoming Thyroid Disorders by Dr. David Brownstein (Amazon.com). It has really helped me to get a better grip on this. My daughter is 9 and was born without a thyroid gland! Also, my mother -n-law has been suffering for 4 years with many of the same symptoms as you. Just had all her levels checked, and her results look like yours. She began dessicated compounded about 10 days ago and is already feeling much better. My daughter is on Nature-throid (dessicated porcine and is doing very well). Be determined to reach your optimal health! You can do this! Good luck and God Bless!
649848 tn?1534633700
COMMUNITY LEADER
What are lab ranges for the FT4 and FT3?  Your labs may be in the "normal" range on the lab report, but apparently, that's NOT normal for you, as it would seem that you are under medicated.  I agree that you would most likely benefit from a different doctor.  I would never recommend cytomel, without knowing the range of that FT3 - you could already be toward the high end and it could make you hypER.  

One thing that we don't think of in relation to our weight is this:  with our reduced metabolism, we have to eat less and/or exercise more or we are going to gain weight.  By not changing our eating/exercise, our body isn't using what we eat quickly enough and it turns to fat.  Happened to me too.........

If you have not been tested for Hashimoto's, you should ask your doctor to let you get that done.  Hashimoto's is treated the same as hypothyroidism, but it's harder to control our levels and keep the symptoms at bay.  

If you had palpitations after you started on synthroid, they might have started you off too high.  It's best to ease up to your dosage gradually.  I was started out on 25 mcg synthroid, then increased by 25, each week until I reached 125.  I know some people are started out as low as 12.5 mcg.  You could ask for a trial dose of, say 66 mcg, then try to increase it by 12.5 every few weeks until you get to a level that eases your symptoms.  Always make sure you get labs done BEFORE attempting to increase your dosage and stay on a dose for approx 5-6 weeks before increasing it, since it takes that long to get the full effect of the dosage change.  

1053883 tn?1258036400
Went to the DR today!!  He was reluctant when I asked for extra blood work.  He said that those would narrow it down to "what" I have, like Hashi etc..but he could only treat the symptoms anyway.  

I was sooo mad!!  I'd like to know what I have regardless thank you!?  Sheesh!  

Then I told him that I feel like I'm just a dead person....then he said he will up my synthroid 50% for 6 weeks and see how I feel.  So I start tomorrow.  

I also have labs that will be back in 2 weeks.  I pray this works!!  

Thanks so much for the coaching!  (I'd be lost without you Tamra!!)  ; )

H  ; )
1052292 tn?1274457092
I'm sorry you are having such a hard time.  I just had to come off my meds for a month for an uptake scan and it's been a nightmare.  I've been back on them for 3 weeks now and my doctor says it will take a minimum of another 3 weeks before my levels stabilize again.  This has been a nightmare so I know how you feel.

She is referring me to an Endocrinologist but they said it will be November or December before I get to see him.  I sure hope he has some additional ideas that will help me to feel better and get back some of my energy.  

I wish you much luck and hope you feel better soon.  

Ronnell
Avatar universal
Oh my god Heather!! Reading your post made me cry. I have been having the same symptoms as you and being given the same answers as you! I am being treated by my GP who never gives me my actual numbers, and brushes me off when I try to explain how horrible I feel. I have requested a refferal to an Endo and was told I didn't need one!!?? At times I've almost convinced myself that it's all in my head and I'm going crazy!! I am depressed, cannot lose an ounce even though I'm breastfeeding! I have always been a small person (115-125lbs) Since having a baby I'm 156 and cannot lose an ounce no matter what. My hair falls out, my skin is oily & dry all at once. My sex drive doesn't exist anymore. I can barely keep my eyes open, I'm always exhausted. My eyes feel dry & gritty, I'm always coming down with colds etc, which turn into bronchitis AND I feel like I have alzheimers sometimes, because I forget everything ( my memory used to be incredible!!) I am incredibly moody too; always snapping on people. I am just so happy I found someone else out there who knows what it's like to feel like this. Thank you so much for posting! Please update me on how you feel after increasing your dose. :)

Jenn
649848 tn?1534633700
COMMUNITY LEADER
There are a lot of us who have "been there, done that" so we can sympathize with you as well.  

Jenn - you need to insist on a copy of your lab report each time blood work is done.  You are entitled to copies of your records.  

It sounds like you certainly have the symptoms of being hypo.  Have you tried getting in to see an endo without a referral?  There are some that will accept patients without referrals, but make sure you check with your insurance company to make sure THEY don't require it.  

I think I'd probably make one more attempt to get the pcp to give you a referral, and if he still refuses, find another doctor.  

You need to be tested for antibodies, as well as Free T3, Free T4 and TSH.  

Wishing all of you the best of luck.  
Avatar universal
After reading these posts I think this is what I've been suffering with for almost a year.  Before moving I was in perfect health, was able to run a mile in less than 4.30 sec, had a six pack, possessed endless energy and the list goes on and on.  Back in January of 2013 I moved into a new apartment; not sure what was in that environment but after about 6 months of living there my health deteriorated rapidly.  
My guess is one of three things happened; was exposed to black toxic mold, radiation or some other unknown toxin.  
Symptoms stage 1 was chronic fatigue, memory difficulty and difficulty sleeping.  Stage 2 started about 7 months of being in the apartment, in addition to stage one symptoms: headaches, blurry vision, disorientation, lack of appetite, increased chronic fatigue, equilibrium problems, and lack of libido.  Stage 3 was: min strokes, pain in joints and muscles, headaches, migraines- thought my head was going to explode.  After a few weeks of feeling terrible I was admitted to the ER; but here’s the thing after all the test the ER doctors did they said I was fine and to go home.  So, I went home and within 24 hours my symptoms had gotten worse.  After leaving my apartment for about two weeks I realized my symptoms has lessened in severity  so I moved out.  Health continued to improve until about three months afterwards, at this point whatever my body was fighting off ceased to do so—my metabolism, digestion, adrenals, thyroid, pituitary functions all seemed to slow or something just wasn’t working.  Gained 30 pounds within a month and started to see doctors and specialists, because of my suspicion of mold all individuals in traditional medicine had discounted my ideas and thoughts on the cause of going from perfectly healthy to severely impaired.   For the last year I’ve fought with doctors and specials, they have not known what to do or think of me.  

Giving up arguing with them I’ve tried to ignore the symptoms for the last year;  (in simplicity I’ve felt dead, not in the ground but like a zombie—have stayed away from family and friends even social events because of my weight gain) the symptoms are as  follows: cold and feet, extreme sensitivity to cold, hair loss, chronic fatigue, no libido what so ever, diminished muscle tone and strength, increased weight despite diet and exercise (truly it is depressing to eat so little and continue to gain weight), depression, lack of interest and desire in anything, trouble sleeping, dry skin (especially on my elbows), blurry vision, memory difficulties, high cholesterol, and IBS.  
Not sure how my doctors and physicians can miss this but getting frustrated with the lack of care I’m receiving.  Even looking over my tests for TSH have shown a dramatic increase.  
649848 tn?1534633700
COMMUNITY LEADER
Was your apartment ever tested for mold to determine if that's what you had? Doctor's can't treat you for something if they don't have evidence that you really have it. Mold issues would most likely cause respiratory issues, as well as some of those you mentioned.

We need to see what your thyroid function test results are... Have the doctors done Free T3 and Free T4, along with the inevitable TSH?  What about thyroid antibodies to determine if you have an autoimmune thyroid disease?  Thyroid ultrasound?  

You should never give up... we've had members who have gone through 10-12 doctors before they finally found one who would help.  Keep looking for someone who will help.  
Avatar universal
I was tested several times; my most recent rest results are T4 was 1.1, TSH was 1.73 and the free throxine was 0.85, FSH was 4.8.  I've seen dozens of doctors and specialists they seem to think nothing is wrong with me.  I played softball a few days ago and am barely able to move, the inflammation in my joints, muscles is terrible.   Hopefully this helps a bit, I just feel tired all the time and can't seem to lose weight regardless of diet and exercise.  
Avatar universal
My levels are as follows: T4 1.1
                                     T3 123.6
                                     TSH 1.73
                                     Free hyroxine 0.85
                                     FSH 4.8
                                     Luteizing hormone 1.7
                                     Thyroid Peroxidase (TPO) Ab 0.4
649848 tn?1534633700
COMMUNITY LEADER
We need to have the reference ranges from your lab report, since ranges vary lab to lab and have to come from your own report.  

Your FT4 may be low in the range, but that depends on the range on your lab report.  Unfortunately, your doctor ordered total T3 instead of Free T3, so we can't tell much from the T3, but the reference range might help us a little bit...

I see that you were tested for TPOab, but what about Thyroglobulin Antibodies (TgAb)... Both TPOab and TgAb are markers for Hashimoto's, so without them both, you can still be misdiagnosed...

Was your apartment ever tested for mold/mildew to determine if that could have been a factor in some of your symptoms?

I understand how you feel; many of us have been there, done that... with proper information, we'll try to help you get the treatment you may need.
Avatar universal
No, treatment alternative medicine and mold testing are out of my price range.  Just saw my endo and because of my test results from a few months ago he said he cannot help me.  Just felt like I was be talked down to about my diet, about my lack of exercise.  I have access to the lab ranges if those will help; my endo is sending me back to my GP and I'm just tried and worn out.  Still have a tough time when my doctor is telling me I'm fine and I feel like I;m a walking dead person.  


Antithyroglobulin Ab my score was 0.9   range was 0- 4.0
Thyroid Peroxidase (TPO) Ab         0.4  range was 0-9.0
Free T4                                         1.01 range was 0.53- 1.43
TSH                                              1.73  range was 0.30- 3.70
Triidothyronine T3                            123.6 range was 60.0 -181.0
9177591 tn?1488375650

Hello James, I have just come across your discussion regarding Thyroid blood test results and your awful symptoms. I am wondering how you are now since your last post which is dated 05 June 2015. Are you aware that low testosterone and low adrenals can cause most of your symptoms as well?

I felt terribly bad for you & am concerned that depression has caused you to withdraw from seeking help. I hope that's not the case & you are much better instead. If you receive this message, don't be a stranger. there are people who do care about others who are experiencing the same symptoms as themselves. I understand how frustrating it is when you're trying to get answers for an invisible illness. When Dr's can't find the answers they often accuse patients of imagining their symptoms. What anyone would get out of that I don't know. I believe you and if you need any support you can reply to this message & get the help you deserve.

Best wishes

Nic (Qld,Australia)

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649848 tn?1534633700
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