Gone from hypo to hyper?

For 12 years I have been taking synthetic thyroxine to treat hypothyroidism due to Hashimotos disease.

Recently I started having symptoms that turned out to be due to excess thyroxine. I had a thyroid ultrasound and my GP says for some unknown reason my thyroid has sprung to life and is producing more thyroxine than it used to.

She advised my to reduce my dose from 125 mcg to 100 but I still felt "hyper" with pounding heart and breathlessness. I dropped the does to 50mcg and had another blood test which showed everything within the normal range. I also had an ECG which showed no problems.

However, the pounding heart is getting worse if anything. Could my thyroid be producing even more thyroxine? My GP is dismissing it as "anxiety" but this is 24/7 and driving me mad, not to mention that I can't sleep and that it is more than a little bit scary. My blood pressure is also very high now when it has always been on the low side.

I don't want to keep badgering my GP but I'm possitive this is not "anxiety" or "stress". Any thoughts would be greatly appreciated.

[Super_sally888]

hi,

when was last test? What were your actual results (and the lab ranges)?Maybe need to repeat test already.
can you ask to be referred to an endocrinologist?
Your thyroid could be getting more active.
Maybe even need to stop meds and reevaluate in 6 weeks.
hope your doc could work with you.

[bibba]

Hi Sally,

My last test was 2 weeks ago (FreeT4 was 16.8 pmol/L (ref range 10.0 - 19.0) and TSH was 3.74 mIU/L (ref range 0.50 -4.00) - my doc doesn't test for T3 unless I insist!

I've been thinking about an endocrinologist too but there is a real shortage of doctors in general in my area and specialists in particular. There is only one endo and apparently several months wait to see him.

You're probably right - if I stop taking thyroxine completely for a time I can see if I "crash" or if the heart symptoms disappear.

Thanks for your advise.

[Barb135]

Your lab is using an outdated reference range for TSH.  The range should be 0.3-3.0, so at 3.74, you are over.  I think I'd insist on a Free T3 every time blood work is done.  I'm not sure I'd completely stop the med, it could make you worse.  

I, too, have the pounding heart beat, but everything checks out, except that an echocardiogram showed a leaky heart valve.  My cardiologist was not worried about it, just wants to check it again in a year, which is coming up in Jan.  I've been on blood pressure med for years and my blood pressure stays pretty good, so the doctors tell me there's nothing wrong with my heart.  

I have Hashi's too and am on 75 mcg levothyroxin (levothyroxine), alternating with 88 mcg + 5 mcg cytomel/day.  

[bibba]

Hi Barb,
Thankyou for your response. I assume you have mitral valve prolapse. I've been reading about that and the symptoms sound exactly like mine. Apparently it is not dangerous but can be annoying to live with.

I hope I'm not becoming a hypochondriac but my doctor doesn't seem to be taking me seriously and I find anything I say that indicates I've been researching my condition is dismissed.

My doctor told me to take Cymbalta (an antidepressant) for my "anxiety" but the side effects were too awful. She said my blood pressure would come down once my anxiety was under control. She refused to listen when I said I wasn't anxious or stressed about anything (except my thumping heart!)

I guess I'll have to go back and be more assertive in asking for the tests I want. Or maybe see another doctor.

[Smilerdeb]

I had the same problem as you last week.
Due to massive stress I also went a fraction hyper and I stopped my meds for 3 days. (look at my thyroid tracker).
Then I resumed them at 50mcg instead of 62.5mcg and start back on 62.5mcg tomorrow (Monday).
I was on the beta blockers for a few days to bring the heart rate down and the last 2 days have brilliant.
Before going back on the T4 meds...bloods were done again which showed the levels had come down.
Maybe thats what you need to do...get on a beta blocker for a couple of days..then see how your levels are.
Just remember that there is a bit of a 'lag' in levels when you decrease the meds.

[Barb135]

I'm not sure what my heart "condition" is - the cardiologist didn't say - just said one valve was leaking, but nothing serious at that time (Jan when I saw him) and that he wanted to do another echo in a year, then if it hasn't gotten worse, we will go every 2 years.  

I don't have the rapid heart rate most of the time, it just FEELS rapid, but when I check it, it's usually only in the 60's, maybe lower 70's unless I've been exercising.  The thing that bothers me is that it FEELS fast and it feels like it's pounding really hard.  

My pcp blew it off too -- said it was only stress - did not offer antidepressant, which was fine with me because I would not have taken them anyway!!!  He also looks at me like I'm a hypochondriac and dismisses most of my complaints.  Because of his attitude, if not for his NP and my ENT, we would have missed the fact that I have Hashi's, we would have missed the leaky heart valve, we would have missed the polyps on my colon, he refused to run calcium & vitamin D tests, so I took it on myself to do the vitamin D --- yep, it's low, so that's another miss ---

oh, BTW - I am afraid that my luck is going to run out soon, so am kicking my current pcp to the curb - I've contacted another for an appt - they called me back on Friday, but called the wrong phone number, so I'll have to get with them again on Monday to set up an appt.  I can't take chances on anything else getting missed or "DISmissed", not to mention that I'm tired of his "beside abuse"...........

[TinaJene]

That's wierd I feel the same way.  I was hyperthyroid for so long that when I feel tachacardic my heart rate is usually only in the mid 70's.  It used to run in the high 90's and when it went high for the short periods of time it was like 117 or more.  Now that I'm maintained in the low 60's when ever it goes up just slightly i feel it bad.  Do you think the heart rate in the low 60's signifiies hypothyroid.

[Smilerdeb]

Barb

The TSH reference ranges are the new ones for Australia.
They used to be 0.50 - 5.5 !!!

Now they have cut them down to 4.0 being the higher end of the scale.
We also use pmol/L and MIU/L ranges which I think differ from some other countries.

Also sometimes Doctors err on the side of caution with people with heart disorders and tend to try and keep them borderline hypo (which some would hate) but which I do well at with the TSH.
My TSH at present is 3.48 and I feel great.
Although I must say I only look at the TSH when the other levels are out of whack which they were nearly 2 weeks ago.

Tina
I find I am better when my heartrate is around 60-70.
I was Graves & Hyper and my heartrate resting prior to RAI was 120 going up to 180 many times.
If my heartrate hits 100, I feel extremely hyper.

I think everyone has a 'comfort zone' and is different to some degree.
I'm just happy I'm alive! lol :)

[Smilerdeb]

Forgot to mention....
Prior to RAI, I lived 26 years with a heart rate that felt like I was sitting on a razor blade.
When I went hypo after RAI (5 weeks later) , I was so used to living like the 240 volts going through me that it took a while to 'adjust' to the slower heartrate.
I even said one day to my partner.."I cant find my pulse!".
Sounds stupid and crazy but it did happen to me.
Now I am used to having the lower hear rate , any fast heartrate puts me in a spin.

I thought I would mention this for all those Graves sufferers who have just recently had RAI or TT.
It does take some time to adjust , just as divorcing my thyroid did too lol.
I felt sad I had no thyroid and as silly as it sounds...took a while to 'accept'.

Acceptance plays a major role in thyroid issues.

[Barb135]

Deb - sorry about the confusion on reference ranges - keep forgetting Australia is different on some things than the US..  

I did not know I had any kind of heart issue when I was dx'd hypo/Hashi.  In fact, just prior to being dx'd hypo, my heart rate was so low, I was put into a 24 hr holter monitor to try to find out what was going on.  When I slept, my heart rate went way down into the low to mid 30's...........That's what freaked the NP at my pcp's office and she sent me to the cardiologist, who did the stress test and echocardiogram, which showed the leaky heart valve.  I later found out that being hypo not only causes the metabolism to tank, but the heart rate as well !!!  

I can't help wonder if I had just gotten so used to having the extremely low heart rate, that now it's in the "normal" range, it seems too fast/hard.........if that's the case, though, I would think I'd be getting used to it by now, as it's been going on for months.  I tried to discuss it with my pcp but, like so many other things, he simply brushed it off with the comment "there's nothing wrong with you" and left the room.  

My TSH is VERY low (0.03) and has been almost from the time I started taking thyroid med.  I don't worry that much about it because my Frees are still barely mid range.  I might be one of those who does better with my TSH suppressed more.  So far, that seems to be the case.  

[TinaJene]

I think the heart rate plays a big role in your metabolism and the functioning of your thyroid.  The low tsh is probably better to have slightly suppressed because it means higher functioning levels, better to be low than high.  I also heard a heart rate in the high 70's-low 80's is where some endo's like thier pt's.  I'm in the low 60's and hate it because I feel it means that I am still low, forget the lab numbers I want to feel better.  I miss my  fast-metabolism.