In a recent post I mentioned that I had been told to go off NDT and back on T4 only after suffering what looked like an epileptic seizure. FT3 levels were twice the normal upper limit so I admit I was most likely overmedicated (blood drawn 6 hours after taking the whole dose as I only took NDT once daily).
I have had new labs and just got the results; unfortunately, only the TSH was measured and it was still suppressed (<0.01). I guess it was a bit naïve to expect it to normalise after two weeks on T4 only, but now doctors want to test me for Grave's.
I did not even know it was possible to go from Hashimoto's to Grave's???
Seems highly unlikely, unless you've always had the two in tandem and the Hashi's was dominant. But, this is typical of the limited understanding of endos. They see a suppressed TSH and automatically think Grave's. No other possibilities cross their minds.
If you have Hashi's, the most likely scenario is that you had a Hashi's 'hyper' swing. Which would mean that the FT4/3 levels suddenly shot up. By 'twice the upper normal limit' I take it you mean your FT3 was about 12, which is typical of a 'hyper' swing, but not high enough to indicate Grave's.
But, then again, if you took your NDT only six hours before the blood draw, that would also have something to do with the high FT3. So, all in all, it's rather unlikely that the Grave's antibodies will come back positive.
Ah, ok. I was thinking of a reference range where the top level is 6.something. But, that would be very low for Grave's. I think he's just looking at the TSH, to be honest. It's a knee-jerk reaction.
I'm with Graves but drank RAI and now with thyroid eye disease and hypothyroidism.
I started self medicating with NDT and I tested just to see where my levels were, as I felt a whole lot better than being on monotherapy with Levothyroxine.
My T3 came in at 7.8 - I had no hyper symptoms, and am staying on the same dose.
I'm on Thyroid S and took my bloods 10 hours after the NDT - guessing had I waited a bit longer I'd have come in under 6.8 being the top of the range.
But then the ranges were initially designed to test people who were on Levothyroxine, so, think and hope, it's a red herring for you.
Does the doctor know you are taking NDT and that you took the NDT only 6 hours prior to blood draw ?
Well, I mentioned that I take NDT but said I take Armour as I didn't expect him to be happy about me ordering it without a prescription from Thailand...he'd never heard of Armour and had to look it up, then said there is no reason to take anything but levo.
However, this is simply not about developing hyper symptoms from too much NDT because I've been off NDT for two weeks now and should feel better as FT3 levels decrease quickly. But my symptoms remain. So I am now looking into alternative explanations (except Grave's).
I just finished reading the book "The paleo thyroid solution" by Elle Russ which contains a lot of interesting information. For instance, she writes that if, suddenly, you seem unable to handle anything with T4 in it, especially after doing fine on NDT for years, you should suspect rT3 dominance or rT3 hypothyroidism as she calls it.
The subject is controversial to say that least as some claim there is no such thing as rT3 dominance as rT3 is an inactive metabolite which does not compete with FT3 and does not block the action of the latter. Others, however, claim that rT3 dominance is very real and will basically keep you hypothyroid even if your free Ts are in range, for the very reason it blocks the action of free T3. rT3 is made from T4.
But am I hypo and not hyper given my recent symptoms...? To be honest, it's not an easy question and I have most of the symptoms the author calls "Hypothyroidism or rT3 hypothyroidism symptoms":
-weight gain (I've gained 20 kilograms in the past six months, mostly on my stomach and hips) and inability to lose weight no matter what you do;
- low energy;
-dry, cracked, itchy skin;
- hair loss;
- brain fog and forgetfulness;
- PCOS;
- weak, brittle, cracking & splitting fingernails (they really look awful and I've tried everything - from nourishing nail oil to supplements);
- high blood pressure;
- unhealthy cholesterol results (my HDL cholesterol is borderline low despite taking cod liver oil and the HDL/LDL ratio suboptimal),
- carb and sugar cravings;
- heart palpitations;
- exhausted and sore after exercise (I have given up running in favour or walking because of it);
-feeling overwhelmed by everyday tasks;
-puffy face;
-bloating;
-stomach fat;
-constant thirst and water won't quench (my friends and family tease me for always carrying a bottle of water with me wherever I go.
Another very bothering symptom but more linked to hyperthyroidism is intense sweating, especially when I sleep (most mornings I wake up drenched) and hot flushes during the day.
Elel Russ goes on to say the following about rT3: " The idea behind why T3-only successfully treats an rT3 problem is this: when T4 converts into rT3, the rT3 essentially blocks the T3 receptors, causing T3 to pool in the bloodstream, and then T3 cannot enter the cells to do its job. This is why people feel hypothyroid when they have a reverse T3 problem, even though they are taking T4 only or a T3/T4 combination medication. This is also why a free T3 test can look optimal, or even high on a lab result, even though the hypothyroid person is not getting the metabolic benefits of T3".
The author has successfully self-treated rT3 dominance using T3 only. There are other, less drastic ways of doing it, such as trying various supplements first to try to optimise T4 to T3 conversion, but she says for some, T3 only will be the only solution.
I have sourced T3 online but not found the courage yet to try it. What I will do is to stop T4 cold turkey as it has not made me feel any better. There are two ways of adding T3: waiting for a week or so for T4 levels to decline, or wait until the first hypo symptoms appear.
The advantage of the T3 only protocol is that people with an rT3 problem usually notice results very fast if T3 only was indeed what they needed in the first place.
This is the second time in a short period of time that I've read that FT3 levels can indeed be HIGH in people with rT3 issues (the second person to state this is Dr. Westin Childs). Most other sources state that high rT3 levels will result in LOW FT3, and for a long time I dismissed rT3 dominance in my case for that reason.
I think it would be worth trying T3 only as it's obvious T4 only is not doing anything for me. If high FT3 levels were my only problem, I would feel better by now.
Yes, I had my reverse T3 tested and in August 2017 with Medichecks it came in over at 29 in a range of 10-24 giving a ratio 11.09 in a range of 15.0 -75.0.
Considering I have Graves and drank RAI, and wasn't converting effectively the T4 I was being prescribed I can see it acts as a sort of " safety net " for where surplus T4 gets " dumped " much like how an overflow pipe would work in a water cistern. - that's my understanding, anyway. ??
So the question is the relevance of reverse T3 in the conversion of T4 to T3 , and I think there are valid discussions in both the positive and negative camps, and the main jury, the Nhs, do not acknowledge it's effect of slowing down metabolism.
Paul Robinson has written much about his success treating and recovering with T3, and I think it comes down to the individual, and understand anything is worth a try.
Since I'm now on NDT the level of my dose of T4 has reduced by 50% so I think if I check out my reverse T3 again, I suspect it will have reduced accordingly, and possibly my ability to convert T4 to T3 will have also increased and maybe in time I'll be able to titrate my NDT a smidgeon.
I just know I felt so much better immediately when I dropped some T4 and added T3 and similarly when I switched over to NDT.
I know what you mean! And I hope I'll be able some day to go back on NDT, especially since T4 only does not seem to be what I need. It seems it takes anything between 8-12 weeks to clear excess rT3, so I should know soon enough if T3 only is what I need or not. I sincerely hope so, because neither NDT nor T4 are working for me right now, and I have taken both for years without problems. Well, I felt better on NDT than T4 only, but never nearly as bad on T4 only as I'm feeling right now.
Yes, i realise that's possible. The only labs I've ever had apart from TSH, fT4 and occasionally fT3 have been anti-TPO and anti-thyroglobuline. They've always been out of range, BTW. One doctor tried suppressing the TSH to around 0.05 to calm antibody activity down, but that never made any difference.
No doctor has ever mentioned this possibility before.
Also, since I've lived with this condition for over 20 years, would Grave's not have manifested itself before if indeed I suffered from both...?
I’m not a dr I can’t answer that.. all I know is my experience and my aunties.. they all go high and low .. my Aunty D who has graves had the radioactive iodine but she still yo yo’s. Its hell on Earth. One of my aunties my Aunty C went from a size 16 to a size 6/8 she was that poorly with it.. my Aunty D she’s on thyroxine at the moment but she goes from being bigger to smaller.. plays hell with your mental health and fatigue.. I had a letter saying that Graves’ disease caused my hyperthyroidism. Then I was told afterwards by one guy is was thyroiditis. It’s gonna happen all over again. Currently it’s going underactive .. it’s a funny thing to hope.. but I hope that the thyroid guy was right and that my thyroid has been destroyed and will need more and more meds over time and then the Graves can’t make it go overactive I suppose ??
When I went over active I had sweats at night, fast heart beat, dizziness, weakness, increased appetite. I also got autoimmune hives for a year with no break. I was having allergic reactions to all sorts of stuff, my hands would shake and my mental health went down the pan.
I couldn’t think straight like I had a stroke, my memory was really bad.. the fatigue and pain overwhelms you.. I also get vertigo aswell..
then after started to go underactive I’ve had chronic fatigue symptoms, pain like widespread pain. And I haven’t fully recovered. I’ve got constant fatigue and anxiety now with pain. My thyroid is normal but it’s low and TSH is higher.. so it’s just been hell.. for last 3-4 yrs.. I gained a stone and lost 2 when I was hyper. I don’t wish hyper thyroid on anyone it’s the worst of the two..
Thanks for your input! Yes, it was tested at the same time and doesn't look to bad to me: 9.1 mg/dL (ref 8.4-10.2). Or should it be a little higher...not sure what optimal calcium levels look like...?
One thing that has really dropped is my B12 levels: a year ago, they were 870 pg/mL (ref 189-883), three weeks ago they were 372. I realise they are suboptimal and that this causes all sorts of issues in hypothyroid people, but am not sure how to bring them up...I've been taking a vitamin B complex where all the vitamins are said to be either 100% of RDI so this drastic drop in B12 levels really came as a surprise to me.
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