I started on 15mcg a day (3 x 5mcg) two weeks ago (16th April) added to my reduced T4 (now 125mcg was 150mcg). I felt like a new person for the first two weeks and was amazed at the energy and stamina I had. My depression also lifted and I felt great! However, yesterday I woke up feeling absolutely dreadful - tired, depressed, no energy. Today was a little better but still not as good as the last two weeks - still very tired and low energy and mood today.
Please can someone advise me - is this to be expected and I will have good and bad days, or do I need to take more T3, or is there something else I can do?
Any advice or comments would be geat plus any experiences from those who have just started T3 would be a great help
Best wishes
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Katkin1
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Hi ssarahstella - that's interesting, I have very bad indigestion too (I suffer from reflux) and this has got worse since starting T3. I wonder if that's the cause?
When I first started taking T3 (I reduced some of the T4 I was taking too) I felt much better for the first two weeks, then I crashed and felt worse than on T4 only.
Because of those first two weeks I felt that T3 was good for me but I wasn't getting enough of it. I then saw Dr Skinner and he prescribed more T3 along with the T4 I was on and then I felt better. The more I changed over T3 to T4 the better I felt (T3 isn't the right answer for everyone but it is for me).
What are your instincts when you listen to your own body? If you feel T3 is a big benefit then I would try and go for more T3. If you think that you were better on T4 only then you could go back to that and maybe have more of it??
T3 does help with depressive symptoms, it helped with mine and it's actually used in the NHS as an anti depressive in some regions.
I felt much better for the first two weeks of T3 than I did in 7 years of T4 only. My instincts tell me that I need more T3, and possibly/maybe less T4, but the endo I saw thought I would be fine now I am on 15mcg a day of T3 and 125mcg T4, and the dose would not need to be changed (I saw him privately). I think I might have a little go at a small increase of T3 tomorrow and see how I feel, but do I reduce my T4 at the same time do you know?
I've only just ended up on T3 only, I've been seeing a good NHS endo and asking to replace some of the T4 with T3, each time I do that I get more symptom relief. I'm basically doing it by presenting my reasoning for it and being polite but persistent!
I've not sorted out the dose completely yet, there's been a bit of a thing I've got to sort out with the endo I saw last (not my regular one). Hopefully it will all become "official" and then I can post her about it.
Very reassured by your story as I am two weeks into T3 only, having been on T4 (200mcg) as well. On 60mcg, up to 80 in two weeks if all well, fingers crossed because, like you, I am starting to feel a bit better. T4 seems not to have agreed with me, but will have to wait and see how I get on - there is always the option of adding in some NDT later.
The more I reduced levo and increased the T3 the better I felt.I then moved to T3 alone. I have now moved on to NDT and T3.
PS. when I was on T4/T3 I took 50mcg and 10mcg of T3. I think (not medically qualified) you may need to increase your T3.
This is an extract:
Dear Belinda: Thank for your inquiry. I understand that you have achieved wellness on Armour Thyroid, but fear that you might be denied continued treatment in the UK because your TSH level is undetectable.
Having a desirable TSH level when on supplementary treatment with thyroid hormone is a hot potato. Mainstream opinion advocates "restoring TSH levels to normal," irrespective of patients' response to the treatment needed to achieve this. This is a theoretical point of view, which, when confronted with the patient’s unsatisfactory response, very often proves to be wrong.
Our rationale for thyroid hormone replacement in autoimmune thyroid disease when the patient has symptoms of hypothyroidism is not to correct the hormone deficiency—the levels of circulating hormone, free T4 and free T3 are, usually appear normal. Rather, our intention with hormone supplementation is to mitigate autoimmune activity. Our hypothesis is that the TSH in this context is detrimental in promoting autoimmune activity. Therefore many (but not all) patients require a low level of TSH.
It is very unfortunate that patients requiring "suppressive" doses of thyroid hormone are denied adequate treatment. Patients are the best judges of their own health.
In the UK, there is one highly respected specialist, Dr. Anthony Toft, who advocates a flexible approach in managing treatment with thyroid hormone.[1] Fortunately, in Sweden where I practice, some clinical pathologists comment approvingly on a "suppressed" TSH that it is compatible with adequate supplementation.
I sincerely hope that you will be allowed the dose of thyroid hormone you require.
Thank you Shaws. Yes, I did wonder if I needed to increase my T3. I feel so sad that I have been given a short glimpse of what most people must feel like, only to have it taken away after a fortnight. I will email my endo to see if he approves of an increase, if not I will have to go it alone as many here have.
It was interesting to read the extract you posted - it says it all really doesn't it?
I'm surprised to see your T4 dosage has only been reduced by so little and the T3 replacement is so small. When I first started on T3 I had been taking 100mcg T4 daily and wasn't doing well on it at all. My endo halved this to 50mcg and added 30mcg/day (split into 3x 10mcg doses), with almost instant effect for the better. Since then my T4 has been reduced even further to just 37.5mcg/daily and my T3 is still the same and I feel fine on that. I seems to me that your doctor is frightened of cutting the T4 drastically and making up for it with the T3, perhaps so he can turn around and tell you 'I told you so...' before taking you off the T3 altogether. It sounds as though you would benefit from a redress of the balance between the T3 and T4 in favour of the T3 and I suggest you fight for that.
Hi Zephyrbear. My doctor wouldn't give me T3 at all without the approval of an endocrinologist, who I saw privately (one she recommended) and she is being guided by the endo - she has not prescribed T3 to anyone before! The endo has said that I should be OK on the dose I am on now and he is happy to see me again but I probably won't need to. However, he has said I can email him which I have just done, but he is not in the office until 3 May. The "I told you so" certainly rang bells in my head. Although he has given me a trial, it was quite easy to get it from him and I wonder if the next step will be to tell me it is not working? I see another fight on my hands.
Thanks so much for your input - I will keep this in mind when I start the battle!
Hi ..im glad you started to feel better on t3/4 combo. I started my combo in dec, starting on very low doses, building up slowly. Im now on 50 mcg levo (reduced from 100mcg) and 50mcg t3 which I am self medicating under the care of Dr P.
I too felt better initially but did have a crash like you did...I think...you are either not on enough t3 or your adrenals are weak and unable to support the increase of thyroid med . This is a common thing. I just went downhill...increasing fatigue, low temps, low bp, low basal pulse but some cardiac issues too. I wrote to Dr P and he strongly advised increasing adrenal support in the way of nutri adrenal xtra. Since then things have stabilised however I feel I now need an increase in t3...im getting more tired again, joints are sore, my temps are on the low side. Im certainly getting there and am much brighter mentally but im still a way off.
I have listed some things for consideration.........
What were your ft4/ ft3 test results like? My ft4 were high and my ft3 were at the bottom of the range which showed a conversion issue
How did you feel on t4 only?..i felt toxic and remained symptomatic
Why not try a small increase? Monitor your vital signs closely over the day. BP pulse temps , also make a note of symptoms, niggles, improvements etc. This will help you decide what is causing which problem, adrenals or thyroid. If you try and it works you then have evidence to support an increase with your endos 'permission'. :/
Very importantly....Have you had your adrenals tested? If they are fatigued...this will affect how well your thyroid meds are tolerated as you need strong adrenal support to support any increases in t3.
Is your t4 creating problems with RT3? This is why Dr P dropped my t4 to only 50 mcg. RT3 creates issues with the t3 receptor cells and why some folk go on to t3 alone.
Is your b12, vit d, ferritin all at a good level within the range? All these if low will cause issues too
Its all a bit of trial and error, trying to discover what is causing what. If I were you (and its up to you of course) but my plan would be
>to post up your last couple of blood results for folk to comment on
>to take an 24 hour saliva cortisol test to find out id adrenals are an issue, if you can afford it
>to start monitoring vital signs carefully through the day
>to try a small increase in t3, if ok with no bad side effects, try another, if not stay at your current level
>to discuss with gp/endo re t4...perhaps consider a reduction??
>to ensure a good selection of supplements are taken for any b12, vit d, ferritin ,adrenal issues (these should be tested for first)
>Try and read plenty and don't over do it when ur feeling better....its early days yet.
Although i cant advocate it....Ive had to take my own health into my own hands because I just cannot stay like this for the rest of my life. Its still taking time and is often frustrating but I feel I know what im doing, though I do get lost on occasions and my new gp seems supportive to a point. I haven't seen one who has' scolded' me for self medicating yet. Can they really blame us for trying everything? If id followed my gp's advice to the letter id have been in my grave long ago.
Good luck, trust your instincts and listen to you body carefully.. Sorry this has been a long comment...if I can help at all, I will. Like this forum,The STTM t3 group on facebook are great as are the STTM adrenal group too
B12 and vit d are much improved, your ferritin could do with being higher..between 70-90, (its about the same as mine) Are you taking iron? Your thyroid peroxidase is high but I would have to do a bit of reading before I made any comments on that.....it would do me good to do so!
Looking at your thyroid results...to my quite untrained eye...it looks like the addition of t3 may be a good idea. Your ft3 should be higher in the range and as your ft4 is at a good level I would 'suspect' a conversion issue and the fact that you have felt better on t3 may confirm this. But be careful on how much you ramp up your t3. I only raise a dose by 6.25mcg each time. I am cautious as I get cardiac issues if too much ie fast hr. you wud also be in danger of a crash...gently does it...remember it is 4 times more potent than t4. Try raising one dose by 5mcg for 2-3 days, if ok raise a second and so on but keep track of your vitals.
Your cortisol result is a bit random by itself as cortisol fluctuates through the day ...a 24 hour saliva test is much more accurate ...well worth doing though
hope this helps a bit. Paul Robinsons book and STTM book are a good investment x x
Thank you so much. You raise some very good points, especially about taking it slowly - I was keen to 'get that feeling back' and may have increased too much if you hadn't have mentioned this again (I did know it but forgot about it). However did you manage to increase your dose by 6.25mcg ie how did you cut the tablets?
Yes, I was surprised at only one cortisol test but didn't like to push as my doctor had done loads of blood tests for me at my request.
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