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Avatar universal

Going hyper on both Levo and Synthroid...WHAT TO DO???

Hi everyone.  I have posted one other time on this site.  I have had a terrible time tolerating Synthroid, Generic Levo, Armour you name it.
My beginning labs as of May 2013.  This was when I started treatment.
Ft3- 2.8  (1.8-4.6)
Ft4- 0.87 (0.9-1.7)
TSH- 6.27 (.27-4.2)

I started treatment and eventually worked my way up to 45mg Armour.  I had many symptoms of sensitivity ie. severe calf muscle tightness which led to bilateral plantar fasciitis (miserable), insomnia, jittery and the most disturbing heart arrhythmia. Stuck it out for labs draws which were drawn on 8-49-13.  My doctor instructed me to take my meds, all of them 3 hours prior to labs. I know...  I normally took 15mg 3xdaily with my last one at 1:00 pm.
These were my labs:
Ft3- 4.2
Ft4- 0.87
TSH- 1.47
I requested that just a whiff of T4 be added and the answer was "your labs are perfect  plus Armour has T4".  "Your Ft3 is the most important, Ft4 is merely storage".  "But I feel TERRIBLE....worse than when I started"!  He said see you back in 3 months. He is an Armour ONLY doctor I guess.  I stopped the armour and symptoms calmed down.

I went to my internist and was started on Synthroid 25mg. only no more Armour. My blood pressure shot up 30 points and again I had arrhythmia.  There is a family history of atrial fibrillation and stroke both sides. I'm 64. I stopped immediately for one week and symptoms calmed down.  My doctor then said to start back on Synthroid 12.5mg and keep an eye on your BP and heart rate.  I'm at that point now:

QUESTIONS:
Should I divide the Synthroid in 1/4th...6.2mg to start maybe?  Would that do any good?
How about alternating days?
What do you suggest!!!

Some additional info.  I had my heart thoroughly checked out last year.  Sound as a dollar.  I exercise regularly and even ran a 5k last year.  There is also extensive family history of hypothyroidism all are successfully treated.
I have an Endocrine appointment Dec. 2nd, 2013.  Finally, I know I need treatment and I want it!  Over the past 4 months my rosacea has cleared, nails are much better, eyebrows are starting to re-sprout.  All good things.
Thank you reading this very long post.  I promised myself it would be short.
22 Responses
649848 tn?1534633700
COMMUNITY LEADER
First off, I'd like to clarify something --- it doesn't take 6 weeks for T4 med to convert to FT3... it takes 4-6 weeks for T4 med to reach its full potential in your blood; if you convert adequately, some conversion starts right away, though FT3 levels may continue to climb even after FT4 levels are adequate.

There are people who are extremely sensitive to meds; we have a couple members on the forum now, who are pretty much like you.  You're right that starting low and going slow is the best way to overcome this. It's pretty obvious that you don't need Armour, with as much T3 as it has.

If you can get the 25 mcg pills split evenly into quarters (no easy task), there's no reason why you can't start at 6.25 mcg/day. 6.25 mcg will not suppress your TSH; nor will it alleviate hypo symptoms, but it will, at least, allow your body to adjust to the med.  Stay with that for a couple weeks, then you can increase to the 12.5 mcg; hopefully, in a couple more weeks or so, you could increase to 25 mcg.  You don't have to stay at each dosage for a full 6 weeks; your thyroid hormone levels aren't likely to change much on either 6.25 mcg or 12.5 mcg. The only thing you will be doing is giving your body time to adjust. Of course, you will need to discuss this course, of action with your doctor, but I see no reason why she wouldn't agree.

It's true that often when starting/changing a med, increasing a dosage, etc, that symptoms will worsen for a short time, or even new ones may appear.  Your irregular heart rate could also be caused by being hypo, or since you're afraid of the medication, now, it could be caused by anxiety, which is also not unusual.  

At some point, you will have to stay on a dosage of medication, because you will be too hypo without it. When you don't have adequate thyroid hormones, your adrenals kick in to take up the slack.  If you go without the thyroid hormones for too long, you tax your adrenals, which could then become insufficient and not be able to handle their other duties.  Adrenal insufficiency is much worse than hypothyroidism.  I lived on an adrenaline "high" for several years, and it's really hard to come down from that, even after the stressor is gone.  I think I'm almost there, but I do still have some pounding in my heart, at times, etc.

Do you have Hashimoto's?
Avatar universal
Sorry...I had a typo on the second lab draw listed it was 8-29-13 not 8-49-13.  Also might I add I'm nervous about going to the 12.5 mg Synthroid and would like to go even lower for maybe a week.  That's why I asked that question.  I want for this to be successful.  I really do.  From what I've read here "low and slow is the way to go".  Thanks
Avatar universal
Just a thought.  Have you been tested for ferritin.  The reason I ask is that low ferritin levels are reported to result in some unexpected reactions when starting or increasing thyroid meds.  Following are quotes from 3 different sources of information on ferriitin.

""I  frequent another board where the role of iron in the metabolism of thyroid hormone is discussed. Along with selenium, iodine, L-tyrosine, zinc and other vitamins/minerals/amino acids, iron plays an important role in the conversion of the less inactive T4 form of thyroid hormone to the more bio-active T3 form.

I've seen iron discussed a bit on this board but not so much about ferritin . I thought you might be interested in what I found. Ferritin levels often begin dropping before serum iron levels become critically low or before full-blown anemia becomes apparent.

Many hypothyroid patients find that having good ferritin levels improves their use of thyroid hormone (their own body's or supplemented). The range of 70-90 is quoted as optimal for hypothyroid patients. Someone on another board asked me if I knew of any research she could show her doctor to support this. He wanted her to stop supplementing iron when she raised her ferritin from 17 to 44.

Here's some of the research I found that suggests a minimal ferritin
range of 50-70 and an optimal range for hypothyroid treatment of 70-90. I have read that in Dr. Gillespie's book, "You're Not Crazy, It's Your Hormones", she advises a ferritin level of around 100. I haven't read her book, so I can't confirm the research basis for her recommendation, but the experience of many hypothyroid patient certainly bear her out.

Improving ferritin levels can be beneficial for both reducing or eliminating hair loss & unexplained fatigue. Both of those are also frequently associated with hypothyroidism."

Also.

"Low ferritin can cause negative reaction like palpitations, nervousness, and anxiety in someone starting thyroid hormone replacement.  Someone described it like being shot out of a cannon.  It is therefore imperative that ferritin not be at the bottom of the range before starting thyroid hormone medication."

And last.

"Iron deficiency is shown to significantly reduce T4 to T3 conversion, increase reverse T3 levels, and block the thermogenic (metabolism boosting) properties of thyroid hormone (238-242). Thus, iron deficiency, as indicated by an iron saturation below 25 or a ferritin below 70, will result in diminished intracellular T3 levels. Additionally, T4 should not be considered adequate thyroid replacement if iron deficiency is present (238,239,241,242)."




Avatar universal
For me to low of a thyroid medication caused worse symptoms than no medication at all. It was severe muscle cramps all over my body-to name one.

Which 45 mg of Armour is a little amount.  Also the Synthroid.  


Your Free T3 was high on the Armour blood test because the T3 was still in your system.  We need 12 hours (to be safe) between meds and blood draws.  We take them in the car after the blood test.

All of your lab tests show you are still hypo. Our bodies need some time to adjust, and it isn't always fun.  Even with each dosage increase we will have some symptoms that subside with time.  

Either med didn't have enough time for raises.  It can take a few months to get to where you need. When beginning Armour (which I love and take so I am biased towards it) You begin at 60 mg split twice during the day.  I don't mean splitting the pill, as it would fall apart, 30 mg twice a day.  Then in two weeks go to 90 mg...keep this up every two weeks until you get to 120 mg (2 grains) Stay there for 6 weeks and restest without taking your medication before the test.  

Your Free T3 needs to be in the high range and your Free T4 needs to be in mid-range.  But, watch your numbers, get copies of every blood test, and find YOUR perfect spot. Ignore your TSH, as should your doctor.

Gimel is right, before increasing on any thyroid hormone other vitamins need to be in order.  Not just in their lab range. You will still feel terrible.


I think with Synthroid you mean mcg not mg. Synthetic is measured in mcg and NDT, such as Armour are measured in mg.  Doesn't mean it is a whole lot more medication.  60 mg of Armour has 38 mcg T4 and 9 mcg T3. Also Synthroid is a T4 medication that takes six weeks for the T4 to convert to T3, which T3 is the hormone your body uses.  Armiour has the readily available T3 and that is why we split our meds up-to feel the affects of T3 all day.  

So in conclusion you are not going hyper...you are still really hypo.

Avatar universal
Can you be more specific about the heart arrhythmia?  Are you feeling your heart flutter at different times? Does it feel like it slows down to the point it stops?  Or start pounding really hard for a few moments?

I don't ask because I know anything about it. I was just curious because every now and again I feel that.  I know for me it is nothing to worry about, since my doctor made me wear a heart monitor because of a confusing sleep study report.  34 bpm to 212 bpm.

I wouldn't play around with the meds day to day.  

Remember it takes time to get our right dose and we will have symptoms come and go and even new ones pop up.  

3 months was a long time to go back and check your blood test.  When first starting meds you needed rechecked in 6 weeks.  If there is a change then you check in 6 weeks again, then in 3 months if you have stayed on the same dosage.  After you find your spot you go as needed or in a year.

Sounds like even though your internist is open to trying anything...there is not a lot of info to back it up.  He/she is missing some basic information that can leave you feeling sick.
Avatar universal
Sorry, one more thought. What was your blood pressure to begin with?

Being hypo I had really low blood pressure. Since it had been that way for years my doctor claimed that it was my "normal".  After beginning treatment my blood pressure is finally around the normal you hear about 120/80.  So my blood pressure did go higher than 30 points. But a good thing for me!

My heart rate was around 50 beats per minute. When I finally found a good thyroid doctor she looked at all my past numbers and asked, Do you get light headed?  FINALLY I had an answer for one of my symptoms!

Having a pulse/ox around is handy. Just to know what is going on.
Avatar universal
Thank you both for your replies.  Stufftie...my blood pressure is normally  124/66  on 5-10mgs lisinopril.  My irregular heartbeat shows up on my blood pressure monitor (it's a good one) plus my husband, an Anesthesiologist, did a manual check of my pulse and said he could feel what could be either PAC's or PVC's or a little of both but not over the top severe.  The thing is, this is all new with the addition of the thyroid hormones. I am very afraid to increase my meds because of family history, and my own symtoms.
Gimel...thank you for all of the information on Ferritin.  My most recent tests showed my Ferritin to be 90.4   (13-300).  This was tested in July.  What do you think?
Avatar universal
Ferritin level is good.
Avatar universal
thank you Gimel.  I wish it were otherwise at least I would have a direction to go.  My first question...Do you think taking 6.2mcg of Synthroid is even worth trying with the hope of increasing to 12.5mcg.  My doctor said "why bother even with the 12.5mcg.  If you need it you need it.  Your body might not even need it".
Avatar universal
Back in May, when you first started on meds, what symptoms did you have at the time that prompted thyroid testing?  
Avatar universal
Back in May my symptoms were fatigue, bad flaky skin getting progressively worse, lots of afternoon naps, brittle nails and hair, losing eyebrows, foggy brain.  The GYN nurse practitioner who has seen me annually for years has kept an eye on my thyroid saying it was low and that I needed to do something about it.  In 2010 she referred me to a NP who treats a lot of thyroid.  He agreed that I needed to get treatment.  I tried both Armour and Synthroid back then but was very sensitive so I stopped treatment.  My labs were better at that time...TSH 4.1 I think.  
Also, this is no surprise as many family members are hypo.  Mainly first cousins.  Mom was borderline.
It takes pediatric doses for me as a rule for most problems.  A tiny bit does the job, generally.
Avatar universal
Off to a wedding back in a few hours.  
Avatar universal
Hi Gimel....I'm back was wondering if you had a chance to look over my recent post.
Avatar universal
Just to throw in my 2c here, I don't see why you can't start out with 12.5mcg (or 6.2mcg if you feel you are really that sensitive). The most important thing will be to stay at that dose for 6 weeks so you can let it reach max potential before retesting and slowly dosing up if necessary. A little medication is definitely better than nothing, despite what your doctor says. Your body does need something, obviously.

Do you have Hashimoto's?
Avatar universal
Taking a low dose of thyroid hormone suppresses your TSH, which is the signal your pituitary puts out to your thyroid, this results with even less thyroid hormone in your body.  In short, your pituitary will detect thyroid hormone in your system and put out less of a "signal" (TSH) for your thyroid to release it's hormones.

On that low of a dose I would rather not take any at all.

Even though being hypo, either by to low of medication or relying on your own thyroid, is a strain on your system.  Your body will use up other resources to try and maintain a balance.  So when you finally try to become optimal other system problems will have to be found and corrected.

I still believe it was a lot of changes in a short amount of time.  
It looks like 3 different medications in 3 months?  Is that right Napzzz?

When first beginning a thyroid hormone our body has to adjust and it is not fun.  Stick with it, follow your (if your lucky) "savvy" thyroid doctors orders, and you will feel better in the long run.

Most people aren't so lucky to have their hypothyroidism found so early.  Their symptoms become so horrible, it feels hopeless.  Also, most people aren't so lucky to have a doctor that is willing to run Free T testing and try several different types of thyroid hormone medication. It took me over 3 years to find a doctor like that.

Avatar universal
Since you are so "sensitive" to the medication It is quite possible that your hypothyroidism was temporary.  Viral, bacterial, or I have even heard to much iodine can reduce thyroid secretion temporarily.

Avatar universal
Thank you Barb, Stufftie and Ahmee for your replies.  Yes, I was on 3 different meds but for 4 months.  I was changed from Armour to generic levo after 3 months of sensitivity by my family doctor who then referred me to an internal medicine doctor.  This was due to concerns over irregular heart beats. I was only on the Levo for 9 days and the internal med. doctor switched me to 25mcg Synthroid because she doesn't like generic.  I've been off the Synthroid for 8 days because of the increased blood pressure and irregular heartbeat (again).  It only took about 6 days for this to go back to normal  bp 124/68.  Tomorrow morning I plan to start back on 6.2mcg Synthroid.  I know that I have switched meds a lot but this was ordered by physicians due to fairly severe symptoms.

Question: Do very many of you develop elevated blood pressure and irregular beats when adjusting to meds?  Is it something to be concerned about?  Maybe if it's normal and gets better, I won't be as worried..
Regarding Hashi's:  What tests are run to determine it? I don't know if I am or not but maybe Endo appt. on Dec 2 will find out.  Aren't I a little old for that...64?
Avatar universal
I found it very interesting how I would have a hypo symptom, and about a week or two into my increase it would fade and then go away, one of my syptoms was palpatations, and slow heart beat, and about 2 or so weeks ago my doctor increased my med and now I don't feel them anymore. I've had so many different syptoms that one by one as my meds were increased they dissapeared. But it wasn;'t overnight, it took awhile. Be patient, that's what i've learned, doesn't get fixed overnight, I've been working on getting myself level for over a year now, but i feel 100 times better then i did, thankgoodness, good luck
Avatar universal
Barb...I feel like the best route for me to take is the one you outlined above which gives my body time and a protocol to adjust to the hormone. I feel like I have been sub clinically hypothyroid for possibly 40 years.  The thyroid labs that I have only go back 13 years and ALL of these labs show TSH at 3.6 or above and Ft4 at the bottom of the scale or flagged as low.  Plus, back when I was in my 20's, I lost a lot of pregnancies...unexplained.  I lost 2 at 6.5 months and miscarried several times around 2-3 months.  Looking back, it was almost as if my body couldn't support a pregnancy.  I finally had a beautiful daughter but not without a struggle.  I again went into early labor at 6.5 months and was hospitalized at Medical College of Georgia.  The outstanding doctors there were ready and were able to suppress my labor.  She was born at 7.5 months...low birth weight.  To this date, she is small (very petite for our family) but has normal intelligence thankfully.  To my knowledge I wasn't tested for low thyroid.  If I was, it could be that the reference ranges were higher and it was felt that I was normal.  After researching thyroid problems, I feel like I may have had inadequate hormones back then. That plus my family history which I have been delving into. Several relatives were hypothyroid.

QUESTION....If a person has been subclinically hypothyroid for 30-40 years how do they EVER replenish their hormones and how does the body even know what that should be? Aren't the receptors a little damaged after so long?  Are people ever BORN subclinical and just stay under the radar?  You seem to have done a ton of research on this subject. Thank you for all of your help.
649848 tn?1534633700
COMMUNITY LEADER
It's very possible that you've been hypo for a lot of years.  Now that I know what I know about hypothyroidism, I believe I had Hashimoto's since I was in my late 20's/early 30's, as I used to swing back and forth (hyper/hypo), with long periods of "normal" in between.  I, too, had trouble getting pregnant and carrying my 2 babies, but, fortunately, I didn't miscarry.  My menstrual cycle was always a mess and I ended up having a hysterectomy at age 46, because of it. I wasn't diagnosed with hypothyroidism until age 58, and Hashimoto's nearly a year later.

Even if one has been hypo for many years, thyroid replacement will bring levels back to what's right for you; you just have to stay on them.  Your body will know when your levels are right. No, your receptors won't be damaged.  You'd be surprised how quickly your body can adjust.  

If you've been hypo for a long time, chances are your adrenals kicked in, somewhat, to take up the slack... this could cause you to be extra sensitive to the med.  You might want to run this by your doctor, since adrenal function should be adequate before thyroid treatment, though you're still going to have to stay on a thyroid med.

"Do very many of you develop elevated blood pressure and irregular beats when adjusting to meds?  Is it something to be concerned about?  Maybe if it's normal and gets better, I won't be as worried.."

Yes, many of us do. It's true that your palpitations could actually be caused by being hypo.  I had them, along with rapid heart rate, horrible pounding in my chest,  blood pressure issues, etc, but all that diminished as my levels came up to where I need them, though as I mentioned above, I do still have some pounding in my chest, which is an anxiety issue stemming from a long term personal issue.  If it would put your mind at ease, you might ask your doctor for a full heart work up, if you haven't already had one.

It really IS perfectly normal for these things to be happening.  As has been stated, it's not unusual for symptoms to worsen or for new ones to appear when starting/changing thyroid med/dosage.

Of course, you made the med changes with your doctors' approval; they were reacting to your reaction, which judging from your statement quoted above, seems to be some anxiety/fear, at this point.

I doubt if you were born subclinical, but it's possible that you have been for a while... I'm sure I was.

It's probably a good idea, if you can split the pills evenly, into 4 quarters, to start out low and increase slowly.  Bear in mind that this isn't going to do anything as far as bringing your levels or alleviating symptoms; you're going to have to get to a therapeutic dose for that to happen.

You're never too old to be diagnosed with Hashimoto's; if you were really hypo all those years, chances are, you've had Hashimoto's and didn't know it. Hashimoto's is the most common cause of hypothyroidism in the developed world and it's not unusual for symptoms to be present, long before blood tests indicate an issue.

There are 2 antibody tests you need to diagnose Hashimoto's.  Those are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAB).  You need them both to definitely confirm/rule out Hashimoto's, because some people have only TPOab, some have only TgAB and still others have both.  Testing for only one, could result in misdiagnosis.

All of that said, it's best to forget about what we think might have happened in the past, and move on to wellness, which IS achievable.  :-)
Avatar universal
Thank you for Barb for your thoughts and for sharing your experiences. I will re-read your post many times I'm sure. All of the information you provide is helpful...very helpful.  I feel so much smarter!
Avatar universal
I was wondering how this worked out for you. I have a very similar experience.
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