1) What is the best way to reduce my t4, given that I'm pretty sure I've gone hyper (after a bout of what felt like hypo symptoms)? Every time I try to reduce I get anxiety and oedema.
2) Could someone have a look at my test results alongside how I was feeling at the time? The second test had to be done on short notice, so I had already taken my t4 the night before and t3 that morning, which I think would account for some of the raised results - ?
I'm on 112.5mcg t4 and (up to) 20 mcg t3 (my heart has begun racing so I sometimes don't take the full t3 dose). I also take omegas, a multivitamin, b complex, two sachets of Spatone and 5000IU vit d.
April: After a few years of feeling rubbish due to Hashi's, my doctor decided to add in 10mcg t3. I was already on 150 t4 and my test results were good but I felt awful. I was advised not to reduce t4 at this stage. Within a week or two of starting the t3, my oedema disappeared and I began to have a bit more stamina. T3 was raised gradually, eventually taking 25mcg by July-ish, and at some stage the t4 was reduced to 125.
Apr-Aug (test results below): Felt really well, most symptoms resolved, taking 10 t3 rising eventually to 25.
28 May 2013
TSH .006 (.450-4.5)
T4 13.6 (4.5-12)
T3 160 (71-180)
FT3 4.4 (2.0-4.4)
TPO 280 (0-34)
TgAb 46 (0-40)
DHEA 117 (31-701)
Pregnenolone 59 (no range)
Sept-late Oct (test results below): Felt ideal, muscle strength greatly improved, started run/walking daily, eventually 3-6 miles a day (alternating running/walking throughout). Bowels a bit loose, a little trouble 'shutting off' at night but mostly symptom-free. Occasional heart-pounding, pulse 80-85bpm, but when I tried to reduce t4 I had terrible anxiety and oedema returned. Note that I had to have the following test on short notice so I had taken both t4 the night before and t3 in the morning. Based on these results I was asked to reduce t4 gradually to 100 by Jan.
1 Oct 2013
TSH .005 (.450-4.5)
T4 8.5 (4.5-12)
T3 211 (71-180)
FT3 5.7 (2.0-4.4)
TPO 301 (0-34)
TgAb 21.1 (0-40)
DHEA 162 (31-701)
Pregnenolone 88 (no range)
Mid-late Oct-mid Nov: Return of exhaustion, constipation, no longer running or getting much exercise, had a bout of terrible agoraphobia during which I left the house alone twice in two weeks. I was meant to be reducing my t4 but all my hypo symptoms had returned so I just maintained the dose.
Taking T3 just before your test will have skewed TSH, T3 & FT3 results. If you felt well on 125 mcg T4 reduce the T3 instead. T3 is approx 4.22 times more active than T4 and your current dose may be too much for you, particularly if your absorption & conversion has improved due to your vitamin supplementation.
Have you tested low for vitD? Too much can be as bad as too little. I was very deficient <10 and was prescribed 40,000u daily for 7 days and 2,000u daily for 3 months and will be retested in 3 months.
Yes, it was unfortunate that I found out on the Friday that the only doctor's appointment I could get was on the Monday, so I had to get the tests done Friday afternoon after I'd taken my meds. Bad timing.
It's hard to say if I felt well on 125 t4. I felt well for about six months on 125 t4 + 10-25 t3, and then I felt a tiny bit hyper, then hypo, and now hyper again. I never felt well on t4 alone.
About two weeks ago I reduced the t3 from 25 to 20 and the t4 from 125 to 112.5 and I feel more hyper than ever, which is so confusing. I've also had to switch from my usual Cynomel to Mercury Pharma t3, which seems to make my heart pound in even small amounts. You could be spot on with the supplements. I had taken a break from the dozen pills or so I was taking every day because I was tired of the nausea, but I got liquid vitamins and perhaps they're changing how my body processes the meds.
The vit d was recommended by my doctor. Like you, I was severely deficient (10) last year and took a loading dose for three months (I think mine was 15,000 daily for three months?). I only managed to raise my levels to around 50, then got disgusted and stopped taking it altogether, had a holiday in the sunshine and next time I was tested it was 100!
Thanks for your reply. Good luck with your vit d! It can be a very long slow road.
I suppose there is nil chance of NHS prescribing 3 months in the carribbean (rhetorical). Fish, salad, beach & sunlounger would fix me up a treat I think. Could probably swing free accommodation with mate & contribute expenses
I felt awful going slightly over the top with t3. I reduced and eventually had to cut it out. That may not be your case however . And yes, a holiday by the sea in the warm is the very best! Except we have to come home again to the cold! I take my holiday in the winter rather than the summer.
Well, apparently I felt at my best when I was a little over, but I wonder if it kept rising and/or my vitamins kicked in and sent me far too high.
The funny thing is that where I went was cold - colder than here - but much sunnier, and the sunshine (or change in diet or something) must have helped, because I was able to make a huge improvement in my d levels despite actually taking no d, when I had previously been taking it in huge quantities and was only able bump it up a little. (But I wouldn't turn down a warm holiday in the sunshine if anyone was offering. )
I reduced my t4 again this morning and my heart rate is still high but I feel a bit more relaxed, so perhaps something is shifting.
Hi I know for certain if I have taken my Free T3, when been tricked into a thyroid test, ie without my knowledge, my FT3 is double exactly from my normal, my Endo agrees with this too.
Even so I would say, in my opinion, that your problems are that you have been overdosed. I think you are converting the T4 ot FT3 OK, and should only therefore be on that. I am a great advocate of T3, but not in this sort of case. I also think you probably did not ive the treatment long enough to work , how it as. This is why it should all be done very slowly, after each blood test.
.If it was me , I would stop the T3 and have another blood test in 4 weeks, TSH, T4 and Free T3. The antibodies etc will go along with the correct treatment, it does not effect what you do, so long as correct.
I was overdosed years ago by a private doc and was very ill indeed. Saw my new then, Endo, had to vastly reduce the drugs, did not believe her, miracle. My symptoms of Hypo were identical to Hyper, she says this is the case sometimes
The other important thing is the other autoimmune and hormonal diseases that go with thyroid, B12 + Foliates, needs to be high in range, with retests. Diabetes normal, hormonal vit D, treatment on a script after test for corrected calcium if needed, retests 4 months. Iron/feritin needs to be clearly in range, if treated, retest after 4 months to check the levels.,
The test for Caeliac disease is not reliable, if you think you may have it, try 6 weeks with no Gluten and see how you feel. It does not sound likely to me.
How are you feeling? I've been thinking about you.
That is v helpful re: test results after taking meds. I can stop worrying that my t3 has been sky-high all this time. I think you're right and even though my dose is lower something (change in brand or taking supplements) has made my t3 kick in with a vengeance and made me feel not just tired (like I did toward the end of taking Cynomel) but actively hyper. I did raise the t3 slowly and took four or five months to build up from 10 to 25 but we all know what an unpredictable thing this can be.
I felt terrible on t4 alone for almost two years - never more than a 10-20% improvement, mostly because I was no longer freezing all the time and the pain in my hands got a bit better - and only began to recover with the addition of t3, so I don't agree that t4 is the answer for me, even though my numbers looked good re: conversion (we all know how that story goes). But I agree that my current situation is not working and needs changing.
On the advice of my doctor I was strictly gf for a year (didn't feel better so I've been a little more 'casual' about it since and allow myself a 'real' beer) so I don't think that is a solution as such, though it is a great experiment as your investment is so little and the potential for improvement so great. Vit d was severely low but has been addressed and I've been tested for hypoparathyroidism, diabetes, etc.
Hi Thanks for your good wishes, I am a lost cause. I only mention being ill , if I think it may help people.Vit D is a hormone, so can make a huge difference, although do watch the corrected calcium does not go over range. You need the same D usually, even in the summer. A year is a long time, Levo stays in the system about 6 weeks andFT3 the same. Armour, works very quickly few days, and reaches optimum in about a week. Being cold is worse if you are Diabetic, so be sure to have an annual test, first symptom, autoimmune and hormonal.
I cannot remember did you see an Endo? I really think you should, thyroid is so complicated. Funnily enough I saw my Endo today, not about thyroid, but she was saying exactly that and the miracle of T3.However, do choose your own Endo, not the GP`s choice, and an Endo not a private doc.You should becoming stable now, if on the correct treatment.
Yes, I see an endo recommended by someone here (though apparently the person who recommended them does not see them any more, hmm). Endo is fine (respectful etc) but conservative, happy to raise my t4 when gp wanted me on a tiny dose, but wanted me to 'wait and see' (seemingly indefinitely) when I'd been on sufficient t4 for a long time. I saw a private doc and that's where the t3 came from. Neither is an ideal relationship; I don't have full confidence in either.
My experience w t3 gave me a lot of hope but was so disappointing when it came to an end.
Hi I have to say if it was me, from all that I have experienced, that the Endo was very sensible. Thyroid doses take an age to get right meds very powerful, small increase and re test after 6 weeks is the ideal. Then to bring in the T3, but all the ;proper tests first.
People have different views on their Endo,, some think nice is good, good more important, but nice a bonus., I always think the most essential thing in any consultant is to really listen and take notice with how the patient thinks and feels, and blood tests in consideration. All my present consultants including Endo do that. However, I have had some terrible consultants in the past.
If you are not happy with the Endo, personally I would give him another change by e mailing him etc, as I suggest, do not give secs messages, not trained and always get it wrong! Then if he is not what you want, find another one, yourself and ask for a new referral.
I honestly would see an Endo and get it looked at, as I am sure, for one that one thing you are overdosed, and also that something else autoimmune, hormonal, is involved, Only an Endo with their huge knowledge on so much of their body, oseoporosis, heart, all glands, hormones etc, and electrolytes, Diabetes and others is ,I believe the only one who can help you. However, they must be good, and listen, ie Mine says, I know my body best, better than bloods or any doc, she actually believes that.
As your TSH is so low, T4 is never going to do you any good. As per my PM, I suggest you stop all T4 but continue with just T3, then you will need to wait about 4 weeks while that all clears from your system. Unfortunately once taking just T3 blood test are absolutely useless as they are so dependent on when you take the medication. You then need to judge how you feel to see how much T3 you need but only increase it very slowly eg 5 to 10 mcg at a time and then wait at least 4 weeks to see how you feel before any more changes. You will also need to split the T3 into small doses and take that regularly throughout the day.
Thank you for your reply and pm Heather. I have some hoops to jump through before my next blood test/endo appt (v mindful that I don't want frighten the horses by turning up with a whole new unsanctioned regimen) and I'm still waiting for my new order of Cynomel (the MP t3 is pants) but your theory gives me hope. I have ordered Paul's book. x
Yes, the change to MP t3 could absolutely have exacerbated things, though I was not feeling well before the change. I never had a problem with the Cynomel making my heart pound at each dose, and this is definitely an issue now. My v kind pharmacist always puts my brand of t4 aside for me, so that is still the same.
I've been tested (neg) for coeliac and I followed a strict gf diet for a year (now I'm a bit more relaxed about it) on my doctor's recommendation (no improvement sadly). I wondered why I had such a hard time w vit d (absorption issues?) but apparently this is very usual so perhaps just par for the course and not a gut issue. I can go back to being v strict with gluten and see if there is an improvement, but it never made me feel any better and in fact when I was feeling v well I had relaxed my diet considerably so I was actually eating gluten and feeling brilliant.
But these are all great suggestions - so many things to go wrong!
Oops, was that meant for me or maybe someone else? My calcium levels were fine. Or do you mean the effect that t3 can have on bones? I'm taking two sachets of Spatone to keep my iron levels good (I know it doesn't work for everyone but I have had good results after struggling with anaemia for years) as well as the other supplements above in op.
I spoke to my doctor about ndt and was told my antibody levels were too high and that I could try it when they're down. My mother takes Armour and it made a tremendous difference to her well being.
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