My mom has Grave's disease and had a total thyroidectormy about 2 years ago. For the past 2 years, her TSH has mostly been in the mid range, borderline low T3, and normal T4.
The last few weeks, she is having symptoms of atrial fibrillation and fluctuating blood pressure (just like symptoms she had few years ago with hyperthroidism before total thyroidectomy).
Some numbers here from past couple of months ...
Oct 15th -
TSH 2.36 (0.34 - 4.82)
T4 Free 16.3 (10.0 - 20.0)
T3 Free 3.3 (3.5 - 6.5)
November 19th - (different lab than Oct 15)
TSH 3.79 (0.27 - 4.20)
T4 Free 22.6 (12.0 - 22.0)
T3 Free Not tested
--> Dec 1 to Dec 3 - reduced Synthorid dose 50% (75mcg normally) due to frequent episodes of atrial fibrillation
Dec 3rd -
(same lab as Oct 15th)
TSH 0.04 (0.34 - 4.82)
T4 Free 16.9 (10.0 - 20.0)
T3 Free 6.4 (3.5 - 6.5)
Any insights and help would be greatly appreciated! We are waiting to hear from endo.
Thanks!!!
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looklane
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I do not know about AF but when I've looked back at your old posts I have seen you mention that you mum has/had an adrenal nodule. I wondered if that has ever been checked? Would it be possible that maybe it could be the adrenal nodule affecting her blood pressure and that it could have caused some of the palpitations?
I hope you find some answers and wish you and your mum well.
Thank you for your reply, Shellian! We did the 24-hr urine test for the adrenal nodule and doesn't seem to find anything. I do think though there's something more than thyroid.
I had total TT this may I also have graves when I was tested in Sep my diagnosis of hyperthiyroidism my TSH was suppressed at 0.5 and my T3 was 24.2 that indicated overactive thyroid (hyperthiyroidism) looks like she could have a suppressed TSH mine was 0.5 suppressed some lovely people on her will be able to give you more insite in to the blood results but obviously somethings not right with you mother if she's having problems with atria fibrillation,,,I did have that when I was hyper and was given beta blockers...but keep an eye on her go by her symptoms...my synthoid has been reduced from 175mcg in increments of 25mcg but I feel no better..if she's not coping to good and gets any worse go to A&E I know just how she's feeling like many on here will
Looklane, there's something strange going on here with this set of results. All three sets of results are quite different, almost like they're different people on very different doses with different thyroid problems.
October is classic very undermedicated. TSH raised, freeT4 midrange (lower than most people need), freeT3 extremely low.
To be clear, more 'ideal' results on thyroid hormone are TSH at the bottom of the range, maybe completely suppressed, freeT4 when taking Levo needs to be high in range and can even be over the top. The most important part is that freeT3 should be in the top third of the range. Your mum's was very low, so I'd expect her to be pretty ill on those results.
Then in November, there's a big change. TSH is even higher, but freeT4 is now high in range. Usually a high freeT4 like that would push down TSH. In unusual circumstances it doesn't, one possible explanation could be that TSH is slow to move, while freeT4 is very quick. So if that freeT4 had surged up quickly the TSH might not have had time to catch up. Another possibility is that freeT3 was still low at the time, which can sometimes keep TSH high.
Now we get to December and it's a complete change again. TSH is now suppressed, freeT4 back to it's low level, and then freeT3 high in range. A lot of people would be very happy with these medicated results, but for some the freeT3 may be a bit high. Many people who have had Graves actually need high-ish levels because their body got a bit desensitised when they were hyper.
I'm assuming from your post she was on the same dose the whole time except maybe skipping some doses before the December measure? If she was on a variety of different doses this might all be completely expected so ignore what I'm saying. If she was on the same dose the whole time then this is extremely unexpected. These differences between the results are huge.
My first thought is, whenever seeing something surprising that it may be a error at the lab or elsewhere. In this case you do have surprising symptoms at the same time which suggests these results are reflecting something really happening, but I'd still check everything out.
The first thing to answer is, was everything done correctly? Is she taking her dose properly every single day on an empty stomach, fasting for two hours before and one hour after the tablet? Were all three tests taken under identical conditions, at the earliest possible time 24 hours after her last dose? Is she taking any other medications or foods that interfere with thyroid hormone or with the test results? Biotin is the big one for disrupting the testing machine, a B vitamin that's often in multivitamins. Tons of things can interfere with absorbing hormone and you should probably look up every other medication and supplement she takes.
Once you've ruled out all those forms of errors you'll still want to know why your mum is getting these symptoms. In October she was very undermedicated, so almost all symptoms are expected. Heart problems are quite common, atrial fibrillation is associated with being overmedicated, but almost every thyroid symptom can cross over between both hypo and hyper. If she'd been on that dose for the whole two years, it would store up all kinds of problems.
Then in November, loads of extra T4 was in her body. Thinking it through my biggest guess would be that she took her tablet a few hours before the blood draw. But if she didn't, there's a big question of how that hormone got into her body. She's had a total thyroidectomy and if she was taking a stable dose of tablets it's a huge mystery. Its possible her thyroid is growing back, that's a thing that can happen and I believe happened to me during my treatment.
Then in December it's even more strange, because T4 has returned to normal and she's got loads of extra T3. Because she's not taking any T3 at all this couldn't be explained by a tablet mishap or even a problem with e.g. her body clearing the hormone and it building up. I don't know enough about Grave's to comment, but my concern might be that something very unusual has happened like a piece of thyroid has grown back and it's still being stimulated by Graves antibodies. It's possible that is more common than it sounds, as thyroid tissue does grow back, and it's particularly stimulated to do so by the very high TSH she's had, and Grave's antibodies are still in the body once the thyroid is gone.
The amount of freeT3 she has is not currently at overmedicated levels, many people on replacement hormone like their levels this high. But the very quick increase will have given her body a big shock and could definitely explain overactive type symptoms.
In your position I'd want a retest ASAP, and to be questioning doctors about regrown thyroid tissue. A doctor may say that's impossible, but they know very little about thyroid.
Again, I don't know as much about Grave's, so it's possible there is another explanation there. But a person who is supposed to have no thyroid at all suddenly having extra hormone in their body should be impossible, so it needs a substantial explanation.
Thank you for the detailed reply, SilverAvocado. My mom's Synthroid does has not changed for the past few months (except in early December when she had the severe afib episode) . We had a chat with the endo and came to 2 possibilities. (1) Effect of the herbal medication that she is taking since early October (to mid-Nov). (2) The thyroid tissue has grown back. The endo has ordered an ultrasound for next week so we hope to find out more then and also to re-do the blood work next week. Currently, she stopped the Synthroid as instructed by the endo, the past couple days, she did feel better (most of her symptoms have become very mild). I wonder if anyone has fluctuating blood pressure experience with thyroid problems? The endo does not think that the bp issue is due to the thyroid. It also seems like she is more symptomatic in the evening and middle of the night.
Anyway, the doctor did say it's very strange too .....
Is the herbal medication specifically for thyroid?
There are several thyroid glandulars going around. These are made of dessicated thyroid tissue from pigs or cows. They claim to be just supplements in order to avoid being categorized legally as medication. However they can contain substantial amounts of thyroid hormone, and some on the forum take them instead of Levothyroxine or NDT because they really are strong enough to replace our tablets.
Some of the brand names are: Metavive, Thyro-gold, others I've forgotten, and there will certainly be others. Check any ingredients for glandulars or thyroid tissue.
Another possibility I hadn't thought of before is that sometimes when people manage to make a big change to improve their health it effectively increases their thyroid hormone dose. Things like giving up gluten, improving vitamin deficiencies, or just improving overall diet by a big step.
Her herbal medication is not specifically for thyroid; however, we don't know what herbs are there. My mom is also taking supplements like vitamin D and Bilberry ... i guess we'll need to wait for the ultrasound and see ... fingers crossed. Thanks again for your insights, SilverAvocado!
Hi- not sure I have any advice but I do have experience as it sounds exactly like my symptoms. I have been having thyroid/ adrenal issues for the past 5 years and it wasn;t until I was at the GP for an infection that he tested my BP and it was 160/110 - twice. I went back and it was 143/86 so I bought a BP monitor and did it twice a day for a week. I had bizarre readins from completely normal to 120/100, 109/90, 135/80 but it also picked up an irregular heartbeat. I get palpitations and feel a flutter quite often. Also, I can feel when my blood pressure is up - I know you shouldn't be able to but when I'm hyper - shaky, warm, talking a 100 miles an hour my BP is 120/100.
GP ordered an ECG for some reason it wouldn't analyse it. This happened previously and the only way they could get it to work is if I stopped breathing! Apparently there are some arrhythmias that disappear when you stop breathing. No one seemed concerned and just assumed I was odd. That ECG did state - abnormal repolarisation but as usual no one has told me what it means.
I've just recently had blood tests back with low TSH - 0.31, high FT3 and 'normal'/ low T4.I am not sure what this means but perhaps hyperthyroid but then I fluctuate with symptoms between being manically hyper to horribly hypo.
Not sure any of that helps but I do hope your mum feels better. The AFib isn't nice, my dad had it and they stopped his heart then restarted it and he's been fine ever since (he was in France and was treated significantly quicker than here).
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