From April to Aug, my FT3 hovered around 7 (ref. 3.9 to 6.7) and FT4 was around 17 (ref 12 - 22). I didn't notice any symptoms at the time. I was on 150mg of ERFA thyroid.
In Sept, my FT3 was 7.27 and FT4 was 18.1, and I started having some symptoms: trouble falling asleep, feeling very spacey, tight muscles, couldn't stop my brain from going round and round, dizziness. I reduced my ERFA to 142.5mg (one-quarter of a 15mg pill) on Sept 9.
Just got my last set of results. My FT3 is now 4.49 and my FT4 is now 14.3. Both are now too low in my opinion, and I still don't feel well. I guess my questions are: how can such a small drop in NDT make such a huge difference? It feels as if I have both hyper and hypo symptoms depending on the time of day. Is that possible? I think I should go back up to 150mg but i just don't know...
Any thoughts on what I should do?
Also, has anyone tried desiccated PLUS a little synthetic, and did that work?
Thanks!
eve
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I've only had antibodies tested once, and they were just slightly over, so I would say yes I probably have Hashi's.
One correction - I took 1/4 less of 30 mg pill, not 15 mg - still 142.5mg total.
Due to the ERFA shortage in Canada, I had to use stock that was about 1 year old for about a month, so was wondering whether that could have affected potency and test results. According to my pharmacist, it could, so I should probably disregard those last blood results. Anyone have any insight into loss of potency over a year and how much that would affect results?
Clearly 150 pushes me over the upper limit for FT3. Should I disregard the last results? Do I reduce a bit and see what happens? Should I add a tiny bit of synthetic, and how much seems reasonable?
Quite a bit has been written on here about the potency of out-of-date medication, and the conclusion is that just one year out-of-date would not affect it.
I would think that you can put the difference in results down to your Hashi's, pure and simple.
Thanks greygoose. If we assume the difference is not due to potency but rather is due to Hashi's, what should I do about it? Go back up to 150mg?
The only other thing I can possibly think of is that I did take one of my 30 mg doses quite close to mealtime for the last few weeks or so. Could that have this much of an effect?
How close is close? If you're talking about taking your tablet with coffee, then yes, it would have an effect. But taking it say half an hour before a meal, probably not much. It's actually unquantifiable, and may have had a slight effect, but more likely to be down to the Hashi's.
I'm talking about taking 30mg of 150mg right before a meal - within 15 min I would say.
At 150mg my bloods were over reference range and I also had symptoms, which is why I reduced to 142.5. It seems counter-intuitive to go back up to 150mg.
Frankly, now it feels as if I have both hypo and hyper symptoms, which is definitely no fun!
Except that those were obviously not your normal circulating levels. You'd more than likely had some sort of Hashi's 'hyper' swing, thyroid hormone being dumped into the blood by the dying thyroid cells. Now that's over and your levels are back to what is normal for you. And you are under-medicated. It's not counter-intuitive if you know how Hashi's works.
Another question. I thought a Hashi's flare would mean my FT3 and FT4 would increase, not decrease. Is that incorrect?
They did. Now they've gone back to 'normal'. The Frees don't stay high for long.
And taking just one of your doses 15 mins before a meal would have so little effect it wouldn't be noticed.
That's all I can tell you. And, if it were me, I'd go back to 150 and see what happens.
Thanks greygoose. Still trying to understand about the Hashi's flare. Are you saying I was having a Hashi's flare for the six months my bloods were elevated, and that now the flare is over and that's why the drop in my numbers?
A little background. I was undiagnosed for 16 years and dreadfully ill during that time with no medication. I have been on thyroid meds for approximately 17 years after that.
Can you have a Hashi's flare 35 years after the thyroid problems started? I would have thought they would be over by now. Is that incorrect?
I am suggesting that, yes. I see no other possible cause.
No-one can tell you how long it takes for your thyroid to be killed off - and it's probably different for everyone. For myself, I'm pretty sure I have been hypo since I was about 8 years old. I was diagnosed hypo/Hashi's at 55. How long I'd had Hashi's, I've no idea because no thyroid tests were ever done until I was 55. But, knowing what I know now, I can pinpoint what ever obviously 'hyper' swings in my life. The last one was at the age of 50 - a massive one, lasted ages. I lost so much weight and my hair grew really thick. It started to tail off about 3 years later, the weight creeping on, the hair falling out. But, when I was diagnosed, my TSH was only about 13, I believe. It's all so totally unpredictable.
When I was 61, I was told my thyroid was now completely dead - but even that wasn't true, because when about 8 years later, I stopped my thyroid hormone replacement completely (for reasons I won't go into) my thyroid stepped up and kept me alive for six months. Not something I would recommend anyone doing, but sometimes you do crazy things in life. And I really wasn't thinking straight at that point.
So, what I'm saying is, you can't predict anything, or take anything for granted with Hashi's. To really know what was going on you'd have to have so many blood tests, it wouldn't be practicable. So, what I'm suggesting is, you try putting your dose back up to 150 and see what happens. Do you feel any better? Do you feel any worse? Can you hold it for six weeks and get retested? It's not as if you're committing yourself to anything. You can put the dose down again just as easily as you put it up. And, it is not logical to think that reducing by such a small amount would affect your results by so much. So, take the most logical solution, put it up again, and wait and see…
Thank you for sharing greygoose. I've also tried and done many different things, some of which I wonder now what I was thinking when I did them!
Right now taking 135mg per day, I feel hypo in the morning but definitely feel quite hyper in the afternoon (after my third 30mg dose). Then things more or less settle down for the evening. How long does it usually take for things to settle down at a dosing change?
Your number for your t3 should lie on the upper third of the range and T 4 just needs a store to be able to convert to high t 3 and you will be in trouble
Thanks carlaFedUP. I have heard that as well. I was mostly wondering about the reason for the big drop in FT3 and FT4 from such a small change in meds.
I've got my latest thyroid results today, which suggest to me the supply I was using had lost quite a lot of potency. Both times were tested around 7am, about 12 hours after my last dosage the night before.
Results on Oct 22 were (taking 142.5mg for 6 weeks, 3 weeks of which was the old supply):
FT3 was 4.49 (ref. 3.9 to 6.7)
FT4 was14.3 (ref 12 - 22)
Today's results (taking 135mg for 3 weeks):
FT3: 6.79 (ref. 3.9 to 6.7)
FT4: 17.20 (ref 12 - 22)
I'm feeling a bit better, but still not good at all. I would assume the roller coaster of being over for around 8 months (FT3 hovering just over 7 from April to late Sept) and then dropping so low, and now back up to a decent FT3 has been really hard on my body. My FT3 is now just over the top. Do I stick with 135mg or reduce a bit more?
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