So sick of being HYPOTHYROID SICK ! HELP !

[molly121]

I was sick last September through last Fall with low Thyroid symptoms and put on 50 mcg generic Synthroid - I had fatigue, was sleepy, blurred vision, low blood pressure, sore leg muscles, low back pain....  Because of some confusion with one of my doctors, which is too long to go into, I was taken off the medication. The doctor said to see in 4 weeks how my labs were, to see if I should go back on the medication again. Within 10 days - I started feeling lousy again.....

So instead of waiting the 4 weeks to get labs done,  they then didn't want to wait and ordered them . And my numbers were not good and had  showed that I definitely had Low Thyroid !  :  TSH  4.08,  Free T4   0.61,  and Free T3   2.0  .    Between my readings and my symptoms, they thought I did need to be back on the Synthroid again and I was once again put back on the generic Synthroid 50 mcg.   I WAS RELIEVED, but hated that I had to start from scratch again and WAIT to feel better...........  Anyway, 4 weeks later after being back on the generic Synthroid, and unlike BEFORE, I did NOT feel BETTER this time around !!! ...   I was scheduled to go in 6 weeks later for labs after being on the drug again - but felt so sick, they wanted me in sooner - and that was at 4 weeks. Btw, the tingling had gotten a little worse and TURNED TO NUMBNESS in my hands and arms and legs. And it's become ATROCIOUS !   My labs came back and were  at 4 weeks after being on the  50 mcg generic Synthroid : TSH 0.55 , Free T4 1.06, and Free T3   2.4 .  .....  My Endocrinologist  looked at my tests and blew me off and said my feeling so TERRIBLE, "It's not Thyroid," "Something else is wrong with you"....but told me to keep taking the medicine... And as far as the T3 reading being LOW, he kept going "uh....uh..." as far as that....and then as though it being LOW didn't matter. ???  

So my NEUROLOGIST who I doctor with for migraines then did the dreaded EMG test, which was as PAINFUL as torture at times when the needles came out, for the numbness and diagnosed sensory nerve damage with Peripheral Neuropathy and because my Endocrinologist said it WASN'T THYROID, my NEUROLOGIST ordered BLOOD WORK like mad to find the cause.  Within a week's time, I gave up 15 VIALS OF BLOOD !!! My tests are NEGATIVE for those tests - for OTHER Immune Diseases AND Cancer.   I have been SCARED to DEATH during all this... So, I went BACK to my ENDOCRINOLOGIST and informed him about getting all these tests and being "exasperated" and that I believe it is STILL my HYPOTHYROID !!!  I had read about Cytomel and since it is synthetic T3 and I had been low in T3,  I thought of asking the him about putting me on this drug - as the weakness in my legs gets so bad that some days I can barely walk and the neuropathy in my arms and legs was getting worse with day by day. I am only 57 and don't want to be an invalid.... My Endo doc is getting ready to soon retire and and set in his ways and I spoke to him on the phone - he talked down Cytomel, saying that they did a paper on it in the 90s on it - that it doesn't work for some people, and some people like it and then it stops working for them, but he'd be "willing" to try it on me...

So he told me to keep on taking the generic Synthroid I was on - 50 mcg in the morning of that  and 5 mcg of generic Cytomel at the same time and 5 mcg generic Cytomel at night.  Well, I got it filled on Thursday and was only able to take 1 of 2 doses of the generic Cytomel - the night dose.  I took everything I was suppose to on Friday - but only the 1 dose of the generic Cytomel and Synthroid on Saturday, because I started feeling SICK  as HELL and was having side effects, such as Nausea, Nervousness, Stomach Cramps, Palpitations, Shoulder Pain Squeezing, Night Sweats, and Hot Flashes.......I've been truly sick for 2 days... I don't know WHAT to do now. Can some DR. out there HELP ?  Haven't taken ANY Thyroid pills since yesterday as I want to let my system de-load.  I want my LIFE back. And my Tests to be in the Optimal place - not just what they consider "normal" - which is HOW "wide" ?  You can't split a 5mcg  generic Cytomel pill either ....  PLEASE, SOMEONE HELP !  Cause my Neurologist NEXT wants to do CT scans for Cancer ????   I still think it's my Thyroid.

[Barb135]

How long were you on the 50 mcg levo?  

There are no "side effects" to levothyroxine because it's the same as your body would produce; however, different manufacturers use different fillers/binders, which sometimes "do" cause side effects.......

You said "Endocrinologist diagnosed 2 thyroid nodules via ultrasound - indicated potentially cancerous. FNB revealed inflammation"... inflammation/swelling can be seen from the ultra sound; did the FNB suggest cancer?  

What "Blood results went from 7+ in October to 5+ in January."?  Are these TSH results? and are you being treated on the basis of TSH only?  

You said "Started on .25 Synthroid every other day for 2 weeks, then every day. Horrible heart palpitations, sweating at night.  Test results 4 weeks later were near 4."  Again, is this only TSH?  Do you have any Free T3 or Free T4 results, with reference ranges, to post?  Have you been tested for thyroid antibodies?

[molly121]

I had posted my "Last" tests with the scales that are considered "normal" above in the reply that starts out "  Actually, those ones I mentioned where the Endocrinologist blew off "........  So you can see them there. IT is in the 2nd BOX where I have written on this forum, so it should be easy to find......

I went into "overdose" on the 5th day of taking the 75 mcg pill of generic Synthroid. I felt like a BRAND NEW PERSON only the day before when I got out of bed....lol

I must re-explain.  I should not have said more....... I wasn't taking ANY B12 prior to the test that showed I had a low B12 .......... It was only after I got the level of 361 that my Neurologist saw my blood work from my current GP when I showed it to him that he said I was borderline and said I needed to increase it and to take the B12 pills or 1000 mcg/day.  Thank God he did, cause no one else did. Not even my GP, lol. My Vitamin D was 31 - and Normal started at 30.... I take 1000 IU a day of that now too. My GP did tell me to do that.

[val92az]

My thyroid function has been just at the borderline of hypo for several years. Four years ago, when I was feeling particularly tired and stressed and the symptoms were worse, my internist started me on the .50 levothyroxine.  Shortly thereafter, I had vision and vertigo problems which no-one associated with the medication. After extensive testing and follow-up, my ENT physician concluded it had been a virus.  Because of further side effects from the medication, physician changed dosage to .25 Synthroid. My energy level was better - however gained weight and bloated - to a new dress size.  I'm a devoted runner and exerciser - and eat a very healthy diet. Forgot my pills on a trip - weight dropped off within a week.  Still borderline hypo but negligible. Last spring & summer, dropped from 119 to 112 with no changes in diet or exercise routine. In fall, health deteriorated - full signs of hypo, except for weight gain.  Endocrinologist diagnosed 2 thyroid nodules via ultrasound - indicated potentially cancerous. FNB revealed inflammation. Was to start on .50 Synthroid, but opted to get 2nd opinion from another endocrinologist 2 weeks after diagnosis.  Ultrasound revealed NO nodules.  Blood results went from 7+ in October to 5+ in January. Started on .25 Synthroid every other day for 2 weeks, then every day. Horrible heart palpitations, sweating at night.  Test results 4 weeks later were near 4.  Have gained weight - primarily in upper body and stomach - nearly 2 inches in waist.  Heart palpitations have stopped but now occasional crushing feeling in chest.  What's the answer?

[Barb135]

In order to make this easier for all of us, could you please post your blood test results, along with the reference ranges listed beside each test on your lab report.  "Normal" doesn't really mean anything to most of us, because we see people who are "normal" and feel like crap every day

How long did it take you to go into "OVERDOSE" when you were switched from 50 mcg to 75 mcg?  

You said your B12 was 361, but after taking 1000 mcg "more" your level went up to 700+- how much were you taking before, and in what form (pill/shot)?  

Your vitamin D level was "1 point over the normal range" - was that 1 point over the low end of the range, or 1 point over the high end?  

[molly121]

Well, I'm still feeling a "fullness" in the chest yet and muscle pain in my shoulders - and the last dose I took was a whole 5 mcg  of it, besides a 50 mcg of the generic Synthroid  with it on Saturday close to noon. I didn't take the night time dose - was afraid I might explode or something, ha ha.  And I took NOTHING Thyroid pill related on Sunday. And today yet I haven't taken anything, but as I said, am still having a "fullness" in the chest and on and off again pain in my shoulders...   Do you think I should take my generic Synthroid and then wait till my "side effects" disappear ALTOGETHER and try whatever splits BEST to a HALF a generic Cytomel pill once a day THEN ???

[goolarra]

Here's what my friend said:

"Correct - I'm on generic........ correct that I take 5 mcg, but I do not split it (I did when I took 10 mcg/day, but I got my pills in 5 mcg, so just took 2 of them); now, I just take it at a time of day that works for me; hold on though, let me go check it out!!  --------------------------- okay, I'm back - I did split one of my generics (with a pill splitter) - it's doable, but did leave some "powder" (not a whole lot) so you'd have to decide whether to take the powder with the first dose or the second, or skip it........"

Maybe it takes some practice?  Also, you might try to get one good half and toss the rest.

I think it's really important for you to only take 2.5 mcg at a time.  Cytomel is very fast-acting and quickly neutralized by your body if not used promptly, so a small dose twice a day has a much different and usually much more beneficial effect than one larger dose.  One large dose is going to give you a buzz followed by a crash.

How long have you been off meds?

The side effects of Cytomel don't usually last for 3-4 days.  It only stays in your system for around 5 hours, which is why you have to take it more than once a day.

[molly121]

I almost always take the Zoloft at night, before going to bed. The generic Synthroid I take many  HOURS and HOURS before I take ANYTHING else..........

[molly121]

Timeline:
January 2009 :  Dry Eye develops - Eye Dr. says Lacrimal Gland has stopped functioning

June 2009 -  First Tingling feeling in Foot when walking our dog, Pain starts in both hips -
                       later diagnosed as Hip Bursitis of unknown cause

September 2010 - Symptoms start up of Fatigue, Low Blood Pressure, Sleepiness, Pain in
                                legs that prevent walking too far, going up steps - worse sometimes       than others , had been having night sweats & hot flashes off and on for years, blurred vision..........

January 2011 - Tingling becomes now more NUMBNESS and SPREADS....


Oh, get this. I had a call into my Endocrinologist today - who did NOT call me back, and so I called again...... I JUST spoke to him : He BLEW off the symptoms I started to list with the side effects I experienced from the generic Cytomel over the weekend (did he think I was making them UP ???)  - as he "gave me a LOW DOSE", he kept repeating, and I needed a HIGHER dose to feel badly and have a side effect ???  I was taking the generic 50 mcg Synthroid in the morning and generic 5 mcg Cytomel twice a day.... With the pharmacist saying it would take me 3-4 days AFTER the last generic Cytomel NOT to have side effects any longer....gee,  if it takes THAT long to stop having side effects - I guess you could feel something from it, no ??    

Anyway, he says for me to go back to BOTH again, with only taking the generic Cytomel 5 mcg ONCE a day ......   Now - do I WAIT till I stop having ALL these sick feelings yet ???  My shoulders STILL bothers me and my stomach still gets in knots .

[goolarra]

Thyroid peroxidase antibodies (TPOab) and thyroglobulin antibodies (TGab) are the two antibodies they test to see if you have Hashi's.  Since yours were both negative, you most likely do not have Hashi's.  Sometimes thyroid dysfunction is from indeterminate cause.

I've got a question in to a friend of mine about how she splits her generic Cytomel...I'll get back to you when she tells me her secrets!  I know they're really tiny.

Zoloft can interact with thyroid meds and make them much less effective in your body.  Are you careful to take them well away from each other?  Have you discussed this possible interaction with your doctor?  Your depression might very well be being caused by your hypothyroidism...it's one of the major symptoms.  All the other symptoms you mention could very well have been the beginning of hypo.

Iron should be listed as iron, and ferritin is a form of iron.  So, you probably have not been tested.

[molly121]

I had a Depression problem for years before this, and take Zoloft for OCD and then Depression which came later....The past few years, NOTHING seem to make the Depression problem better, even though I've been on the Zoloft for the other at a higher dose for OCD for many years.  I am guessing the Thyroid problem is part of that.  Also, around 2 years ago this time, I suddenly got Dry Eye, and my GP then did a TSH on me and it was 3.48..... and my B12 was 617.   Some months later, when I noticed some tingling in my foot when I would walk, but 15 months BEFORE this BIG ILLNESS drop like a BOMB on me, I developed PAINFUL pain on both sides of my HIPS when I would walk...they diagnosed it as Bursitis...and I was in AGONY.  Could all of this have been the beginning of the HYPOTHYROIDISM ???

[molly121]

  When all this started with me,  back in the Fall, I had gone to a GP who had put me on generic Synthroid 25 mcg for 2 weeks after a low T4 reading on blood work, then 50 mcg, then a month later I was no better, and he put me on 75 mcg - where I went into OVERDOSE.  I was as jittery as all get out and my heart was pounding like a marching band drum. Called his office andthe girl there said she'd pass on the message -  the bum didn't even call me back !!!  Called him the next day AGAIN and his secretary said to cut them in half for a few days and I might feel worse for a while.... Needless to say, I didn't go back to HIM again.... I actually started to feel BETTER about the 4th day of being on them, BEFORE my heart went out of control and I got all jittery - I felt like my OLD SELF AGAIN - How I did BEFORE I GOT SICK.... I did what he said and went down to the 35 mcg and then went back on the 50 mcg. But I lost faith in him  after this and he didn't care if I had a heart attack with my heart beating out of control that I had to pull out my tranquilizers, the bum....I was just doing what it said inside the sheet that came with the medication by calling him, for God's sake.

Actually, they did an FSH test and a Thyroid AB Group, which consisted of THYROGLOBULIN AB & THYROID PEROXIDASE AB  - which were negative & ruled out those things when I went to the first Endocriniologist right after New Year's. So Hashimoto's is all that is left. It certainly ruled the Pituatary out and the other thing, which my Thyo brain prevents me from remembering... Which antibody test for Hashimoto's did you mean ? As I guess they were testing to see if other things were out of wack first.  Those are the only tests I have had ever had for Thyroid besides the Free T3 and Free T4 and TSH . My Neurologist ran a whole battery of autoimmune tests though that came back negative for everything ELSE though...lol.  My B12 was initially 361, which my Neurologist said was Borderline, and should be better and told me to take 1000 mcg more, which after a month put me up to over 700. My Vitamin D level was 1 point over the normal range, so I take 1000 IU for that a day. My iron ? I have no seen that listed on my tests as "iron", lol, and looked and looked and can not see it as anything else as well. I would think it would be " ferrous" maybe, but I don't see that as well ??  No one even questioned that, ??  Or tested for it then.??

This Endocrinologist I have really doesn't like Cytomel - I can tell.... Telling me how there was a paper on it in the "90's" ???  Then how it doesn't work for some people and how others it works, then stops working ??  BUT, HE'D BE WILLING TO "TRY" IT ON ME ??? , lol.  He's planning to retire in a couple years and I think he's probably set in his ways....  

I tried splitting the 5 mcg of the generic Cytomel with a pill splitter - I have one with a razor blade in it. But it made a DIASTER of it and ruined the pill and could not take it as half and half....not even one side was "half".  They are so darn TINY....

Any light you can shed - please fire away. I think my husband thinks I'm nuts and as I said - he thinks I want to be my OWN doctor, when I just want the MADDNESS to END !   He also thinks I'm LAZY too.  What can I do here with support like that ?  I have no one else to talk to...

[goolarra]

There's a lot going on here, so let me hit a couple of points, then you can hit me up side the head if I miss anything!

Your last labs show that your are still very hypo.  FT4 is still below midrange, which is the target for FT4.  FT3, as you pointed out, is below range, and, yes it DOES matter...it matters VERY much because FT3 levels correlate best with sympttoms.  With your FT4 still low, that might self-correct once your FT4 level comes up a bit.

Your doctor didn't give you very good advice on how to take the Cytomel (he probably doesn't know that much about it).  First off, many people start out at half the recommended dose (5 mcg TOTAL per day) until they get used to it.  Yes, you can split the pills...get yourself one of those pill splitters with the little razor blade in it.  I know many people who split 5 mcg pills into 2.5 mcg doses.  Most people take half the daily dose in the morning with their Synthroid.  The second half is usually in the afternoon, but most people (depending on schedule, of course) avoid taking it after about 3:00 pm because it can interfere with sleep if taken later.  If you tolerate 5 mcg total per day, you can think about increasing if symptoms still remain.

Have you had B-12 tested?  I think this might be especially important in your case because of the tingling and numbness.  Other deficiencies that sometimes accompany hypo are vitamin D, iron, ferritin and selenium.

Do you know the cause of your hypo?  Have you had antibody tests for Hashi's?

I agree with you that your thyroid condition has not been corrected adequately.  Until that happens, you might be putting yourself through a lot of unnecessary testing.  You need a new doctor...this one will keep you sick.

  

[molly121]

    Actually, those ones I mentioned where the Endocrinologist blew off my  Low Free T3  result WERE the last Blood Tests I had after being back on the 50 mcg of Synthroid for 4 weeks. I had not felt any better and some things were getting WORSE - like the minor tingling I had now changed to BIG TIME NUMBNESS !  I'll repeat what those test levels were again :
TSH  - 0.55  (scale of 0.27 - 4.2),  Free T4 - 1.06  (scale of (0.7 - 1.7 ), and Free T3 - 2.4  (scale of 2.6 - 4.4).   Even 3 weeks, later after getting the horrible EMG test done with my Neurologist, being the human pin cussion as I had 15 vials of blood drained out of me for blood tests and had to worry that one of the tests might say CANCER !!, my symptoms were getting progressively worse. I want to get off this CRAZY TRAIN.  I want to be able to walk again without getting tired and my legs hurting, stop feeling cold all the time, no more brain fog, be able to REMEMBER again and not think I'm getting DEMENTIA ???, have no more NUMBNESS and worry about nerve damage ... It's ruining my marriage and as when you have a husband who thinks I READ too much about THYROID on the computer and am DOCTORING myself - when I want answers and am willing to try what the treatment it out there  ?  I am living in Hell in more ways than ONE.  

Please, someone, pull me OFF this CRAZY TRAIN !

[FTB4]

Could you post your last Free T3, Free T4 and tsh including the reference ranges provided with them? This way members can look them over and can comment and advise.
Welcome to the Thyroid Forum and good luck. FTB4