Having extreme hyper symptoms but labs not showing it...

[Velise9]

I am having extreme symptoms after being stable on my med for years. I have hyper like symptoms, but my doctor says the levels look okay. I had to switch from Westhroid to Naturethroid and have gradually felt worse. I have had hypo/hashimotos for 20 years, synthroid did not help for many years. Found westhroid 6 years ago and have been amazing until it went away and the RLC lab has done something different to it. :(

Symptoms include: blood pressure and pulse spiked on first few days, but have since been normal despite feeling awful still, heaviness in legs/arms/hands, pressure in chest (feel like it catches at times to get a breath), lightheadedness, nausea, tremors, feel amped up, no appetite. The symptoms wax and wane in their severity, but usually last for several hours. I will feel semi-normal for brief periods, but most of the day I am miserable.

I have had the chest pressure and amped up feeling before (usually at night), but most of the others are new or are way more severe.

TSH was .04 (usually around .3-.4 and I felt good there.. doctor seems to think the FT's don't indicate hyper however)

FT4 was 1.1
FT3 was 3.5
Antibodies up to 94 from being steady in the 60's for the last few years

Any insight would be much appreciated. I have missed a week of work and have gone to the doctors three times! I see another new doctor tomorrow (of course I am between doctors when this happens, so trying out a new one I have wanted to see tomorrow) and any extra insight from fellow thyroid sufferers would be very helpful.

[telus2]

Do you have hashimotos and your thyroid still like me?
I had an overactive thyroid and I had the radioactive drink that killed it.

How high are spikes to indicate AFIB?
When it starts it can easy be 110 - 150 bpm, then gradually tapers off to maybe 90-100 but spikes back to 110-120 if you move around. Goes lower than 90 when sleeping. If you do some exercise it can easily spike to 150-170. Cardiologist says try to stay under 180.

Did your AFIB wake you up?
Sometimes, if it starts up thru the night.

When I had these symptoms years ago, I had stress ekgs and wore a halter and they found nothing?
Exactly the same with me. But if you do not have AFIB when they run the test, then they won't see anything; you will look perfectly normal. Same would happen now if you did not have AFIb when they run the test. My AFIB came for short periods and went away for long periods over the years. But now I'm having it around 50% of days. Sounds like you could be having a lot now, so a 24 hour Holter Monitor test would see it.

And is it possible the AFIB is secondary to the thyroid stuff?
It is possible. Too little or too much thyroid hormone can cause AFIB. And correcting the thyroid hormones stops it sometimes. But you need to be taking your NDT not just for your heart, thyroid affects everything in your body.

TSH is super low though, which is weird if I were hypo.
Nope, not weird. Your TSH is very low because you are taking NDT. This is characteristic of NDT, it drives your TSH low even with lowish doses because it contains T3. Your very low TSH does not mean you are hyperthyroid.

Wondering if I wasn't absorbing NDT very well, which could make sense to be hypo?
I think it is more likely that the dose is too low, and the effect has finally caught up with you. I can only tell you what I would do.  Naturethroid was working good, so I'd start by trying a little more. Simply going to 2 1/2 grains would gives 95 mcg T4 + 23 mcg T3 which would make a big difference and would probably put your fT4 and fT3 in a good spot.

She is recommending Tirosint?
Tirosint is like Synthroid, it is T4 only. The problem is that if you have to crank up the T4 to above normal in order to get your fT3 to a good level, then your Reverse T3 will surely be above normal -which is not desirable - and that is a whole other story.

I'd get a heart monitor and record your bpm for a few days so that you get to know what is normal and what isn't. Keep a diary of when you feel normal or not, then compare it to your bpm. Keep track of how many hours per day your bpm is obviously not normal. You may find it increasing if you don't start something soon.

I find that I can usually stop the AFIB by going for a really brisk walk or more often I go out for a run. This gets my heart rate up and my heart flips back into normal rhythm. It can take anywhere from 3 to 30 minutes of exercise. Getting on an elliptical machine will work too.

[telus2]

Velise,
With your symptoms, especially heart palpitations, rapid rate, nervousness, anxiety, or panic attacks, it is possible that you are having atrial fibrillation (AFIB). I get AFIB and a lot of the symptoms you describe are similar to what I have felt: pulse spikes, lightheadedness, feel amped up, symptoms wax and wane in their severity,  usually last for several hours, feel normal sometimes.

You could give yourself a self-test if you or a family member has a sports watch (such as a garmin, or a fitbit will work) that monitors your heart rate. Record your heart rate for a few hours or for a whole day and at the same time write down notes of how you feel as you go. Then download a heart rate graph to your computer.  Hopefully you will see periods when your rate is pretty normal; AFIB will show up as periods of obviously high, irregular and erratic heart beat.

Your dose of 2 grains Naturethroid (which contains 76 mcg T4 and 18 mcg T3) is not a particularly high dose. If you search for what is the average dose of NDT (natural desiccated thyroid) you will see answers like 2 -4 grains, so you can see that you are at the rock bottom end. For comparison I was definitely hypothyroid on 73 T4 + 17 T3 and also on 87 T4 + 15 T3. In addition, your lab results are not high, so I don't think you are hyperthyroid.

I think what has happened is that the 2 grains of NDT was kind of a so-so, slightly sub-normal dose that kept you near normal for many years, but as you have got older, you need something better than a sub-normal dose. Something else that could tip you over to clearly hypothyroid is if you forget to leave long enough time between taking your pill in the morning and eating breakfast - food interferes with absorption of the meds, so your already sub-par dose becomes lower yet (this was a mistake I made).

But you probably are asking isn't AFIB a sign of hyperthyroid. Yes, it is but it is also caused by hypothyroidism - you can find lots of cases if you search, but it seems like that fact is little known among doctors.

So what to do? If you were a bit hypothyroid, then stopping the Naturethroid isn't going to solve anything, in fact it would likely make things worse. I would start taking it again and work with your doctor to try a bit more. Don't go overboard, that won't help. Make sure to avoid food and drink for an hour after taking the NDT. With your heart symptoms, your doctor should have sent you for an electrocardiogram (EKG) by now. If not, ask him to; and try to do it when your heart is racing. If the report comes back indicating AFIB, tell your doctor to refer you to a cardiologist.

A cardiologist may prescribe beta-blockers to keep your heart rate from going too high, but some beta-blockers interfere with thyroid hormones. The cardiologist I see recommends Metoprolol because it has the least effect on thyroid.

[Velise9]

Good points. My tsh is super low though, which is weird if I were hypo. I know frees are more indicative, but seems odd. How high are spikes to indicate AFIB? When I had these symptoms years ago, I had stress ekgs and wore a halter and they found nothing. I seem to be sensitive to heart like effects from fluctuations in my meds. My doc did give me a beta blocker, but nervous to take as my pulse is very low and besides a few spikes at night, my pulse is as well. This is all since I switched to naturethroid from westhroid, so wondering if I wasnt absorbing it as well, which could make sense to be hypo. I just dont have many hypo symptoms, or they seem to fluctuate from hyper and hypo. I assumed when this happened years ago that it was a flare of the hashis- spurting out more hormones or something. I really hope my current docs can figure it out. She is recommending Tirosint to try when she decides to start t4, may be soon. Did your AFIB wake you up out of sleep? Like a heart roll feeling that keeps you from sleeping once you start to fall asleep? And is it possible the AFIB is secondary to the thyroid stuff, so treating that first before using meds to bandaid symptoms? New to all of this. Thanks for your reply! Do you have hashimotos and your thyroid still like me?

[gimel]

It would take a while for the reduced dose to affect your Free T4 levels, but more importantly, T3 has a half life of less than a day, so a 3 day stoppage of 2 grains of NatureThroid should have had some noticeable effect, if it were hyperthyroidism you are dealing with.    The range for a morning serum cortisol test is so broad that being in the lower part of the range can often cause issues.  Same for  saliva cortisol ranges.  

[Velise9]

She is testing my thyroid labs again and blood cortisol, just because the results are quicker (my symptoms are so extreme). She recommended tirosint  since I have hashis, but I am nervous about losing the t3 after being okay on Westhroid for so long. I just don't get why I could be tanking so hard and why it is taking so long for symptoms to pass. I am still taking nothing and feeling defeated about the trial and error of thyroid meds again. She also prescribed beta blockers for when I am really extreme with tremors. I haven't been sleeping and she thinks it may help. I am nervous about taking them too, since I worry they will impact my thyroid or adrenal levels. Any advice?

[gimel]

Red_Star mentioned the possibility of your symptoms being related to hyperthyroidism due to Hashi's.  When you look at the following list of symptoms typical of hyperthyroidism, there are some that you have mentioned, but a number of others not in this list.

Anxiety
Mood swings
Nervousness or irritability
Fatigue
Muscle weakness (in particular, the upper arms and thighs, making it difficult to lift heavy items or climb stairs)
Hand tremors
Rapid heart rate
Heart palpitations
Irregular heartbeat (atrial fibrillation)
An intolerance for hot weather
Increased sweating
Weight loss despite a normal or increased appetite, although some people with an overactive thyroid do gain weight due to the increase in appetite
Thinning hair
Swelling around the eyes or within the whites of the eyes (only seen in people with Graves' disease)
A goiter, which is an enlarged thyroid that may cause the neck to look swollen.

I think you might be surprised to learn that the symptoms you recognized all were in the last half of the list I previously posted.  Those symptoms all relate to hypocortisolism.    Hypocortisolism is a common problem with people with hypothyroidsim, especially among women.  So I suggest that at your appointment tomorrow you bring this up and ask that in addition to tests for Free T4,  Free T3, TSH, and Vitamin D, B12 and ferritin, you should be tested for cortisol.  For cortisol the best test is saliva cortisol (free cortisol) done at different times of the day.  Doctors usually will only order morning serum cortisol, which is Total cortisol and not nearly as revealing as the Free  cortisol tests.  Take what you can persuade the doctor to do.  If needed you can always order online a test kit for the saliva cortisol tests (costs about $135).  

I expect that you were a bit under dosed to start with and the change in brand may have reduced your FT4 and FT3 levels due to less absorption.  
T3 seems to stimulate some cortisol production, so could the med change have affected cortisol level?  Also, stopping the med for 3 days didn't seem to help, so that makes me less suspicious of hyperthyroidism.  So, having no other ideas,  I think it is worth checking your cortisol.

Please let us know how it goes with the doctor tomorrow and any new test results.  

[Velise9]

My doctor said she did not suspect adrenals. I had a salival cortisol test many years ago when I had similar symptoms (although milder) and they were all perfect. I am quite stumped. The doctor also mentioned that it would take awhile to feel better after reducing dose, esp if it had been too much for awhile. I will bring up the cortisol thing again with different doc today, no harm in asking. Thanks!

[Red_Star]

My labs showed a TSH of 6 and free T4 at 13 (10 - 20) pmol/L and I was VERY hyperthyroid. I had Hashitoxicosis due to Graves antibodies showing up.
Of interest, the lab tested thyroglobulin serum (not even requested lol) which came back high due to hyperthyroidism.

My doctor said she would prescribe anti thyroid medication but I said I would see if symptoms resolved first.
They did 2 months later. I have had both types of Hashitoxicosis. The leakage symptoms from active Hashimoto's thyroiditis are milder hyperthyroid symptoms in comparison.

[Velise9]

In your opinion do you think I could have induced a hyperthyroid state from my meds, despite my blood work? It is so odd that I feel so awful but labs aren’t that shocking. In the evenings, I feel so horrible it feels like I have been poisoned. Are you still on meds? I feel like I am just going to have to wait it out. I see a new doctor today for an opinion about being off of meds completely, as I have been supplementing  for 20 years.

[Red_Star]

I am on thyroxine. But due to toxic mould exposure which is messing with my immune system I get hyper on and off and have to stop thyroxine then restart. Last year I had a test done and was tested on the second day of being hyper and only the TSH had dropped but free levels hadn't been affected interesting enough.  

I've read thyroid hormone is one of narrow therapeutic index (NTI) drugs. So even switching between generic drugs and brand drugs can cause issues! From The Washington Post article - Drug expert explains how generics do and do not differ from brand-name drugs:

"Either a brand-name or generic NTI drug can work, but once you have identified a suitable version, it may not be advisable to switch back and forth, even between two generics, because the formulation characteristics might be different and affect the blood concentration."

[Velise9]

From your list I have had these, in addition to those I mentioned above:

Diarrhea or irritable bowel syndrome 
Frequent nausea 
Heart palpitations or rapid rate 
Nervousness, anxiety, or panic attacks 
Weight loss, can’t gain weight 
Difficulty falling asleep 
Difficulty staying asleep 
Frequent colds and other infections (have felt like I had every bug going around this year)
Low blood pressure, lightheadedness 

The tremors are the worst, they have been my whole body and quite strong.

TSH was .04 (.40-4.5)
FT4 was 1.1 (.8-1.8)
FT3 was 3.5 (2.3-4.2)
Antibodies up to 94 (<9)

I was taking two grains of Naturethroid, 1 in the morning, 1 in the early evening. After the switch to it (from westhroid when they stopped making it), I had mild hypo symptoms so started biting my pills in half. I seemed to stabilize, but have gradually felt worse and worse, with this horrible flare (call it this, not sure what to call it) as a result.

I have not been tested for ferritin, vit d, or cortisol in many years, but all have been okay in the best. I have supplemented iron and vit d and take vit d currently (as remembered).

[Jenn1302]

I had most of the symptoms that you mentioned above when my thyroid was swinging between hyper, hypo and normal. Have you been tested for Graves? Having both Graves and Hashimoto's can this too. Based on what I've heard people who have both conditions often experience odd hyper and hypo symptoms even when their labs are completely normal (except for the antibodies).

[gimel]

In trying to assess thyroid issues, the most important indicator is always symptoms.  So please review this list and tell us which ones you have.
  
 Fatigue
Aches and pains
Cold hands and feet
Decreased sweating
Need excessive sleep
Weight gain
Depression
Losing scalp hair
Dry skin
Mental slowness
Constipation
Diarrhea or irritable bowel syndrome
Frequent nausea
Heart palpitations or rapid rate
Nervousness, anxiety, or panic attacks
Weight loss, can’t gain weight
Excessive sweating
Difficulty falling asleep
Difficulty staying asleep
Hypoglycemia, must eat frequently
Frequent colds and other infections
Low blood pressure, lightheadedness
Low tolerance for stress, slow recovery
Salt cravings
Sugar cravings

Also,  please post the reference ranges shown on the lab report for those test results.   What thyroid med are you taking and what is the daily dosage?  Do you take it in one dose or split into two doses? How soon after the change in med did your symptoms start?  

If tested for cortisol, Vitamin D, or ferritin please post those results as well.

[Velise9]

I also wanted to add that the doctor I saw (more of a primary care doctor) has taken me off my medication all together as she was worried I was getting too much due to my symptoms. She says this is completely safe, but I worry about just stopping them cold turkey. Have been off of them for 3 days and symptoms aren't abating.