I started 3/4 grain Erfa about 6 weeks ago and I feel it is not agreeing with me, Ive felt flushed, panicky and awful muscle cramps in my back. The plus side is that my skin is clearer and I don't feel so tired. My dr has suggested adding some T3 to the Erfa which I will do and perhaps start with a small dose first.
My question is if I wanted to go back to Levo and try adding T3 what is the best way to do this whilst on Erfa. I was on 25/50mcgs levo prior to starting Erfa and my T3 was under range which is why I've started on it, I liked the idea of one tablet with both T3 and T4 but I'm thinking I can have more control of the T3 by taking it separately.
My dr is happy for me to do this and said its trial and error what will suit me, I'm not due an appointment for a few weeks and I don't think I can carry on feeling like this. my blood results prior to Erfa were:
TSH 2.1 (.35-4.5) TSH seems to range from 1.1 to 2.6 in the past
freeT4 17.2 (11-26)
free T3 3.5 (3.9-6.8)
post Erfa results taken morning before meds)
TSH 1.25 (.27-4.2)
Free T3 3.9 (3.1-6.8)
free T4 12 (12-22)
Also had a test that was lost in the post but turned up out of the blue and the free T3 was 5, Free T4 13.4 and TSH was 0.8 taken about 6 hours after Erfa.
Any advice would be appreciated.
thanks very much
RG
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Runnergirl
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All my vitamins B12, folate, iron and vitamin D were tested and were fine, don’t have the results but mid to top range as they have been low in the past, I also tested positive to adrenal antibody and anti mitochondrial antibody this time which is being investigated, Dr thinks because of the Hashis I seem to develop the antibodies to other things but not the diseases, I’ve also had coeliac antibodies in the past which have disappeared but I’ve been advised to go gluten free to stop the other antibodies attacking. I may need to be referred on but they will discuss plan when I see them again.
Whilst on the levo I could be feeling quite well and suddenly have a slump, that’s when I took the first blood test as I felt hypo and I was right. That’s how it’s been on levo intermittent slumps of energy then feeling well. I’m also in menopause it appears so I’ve upped my HRT dose this week!
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
If, once levothyroxine dose is high enough, (or as high as you can tolerate) if Ft3 remains low, then adding small doses of T3 alongside levothyroxine often necessary
Some people prefer NDT, but some people find it has too much Ft3 in relation to T4
Liquid levothyroxine is often better tolerated that tablets, but is expensive
Which brands of levothyroxine tablets have you tried
I just wonder if you have given NDT a long enough trial ?
First and foremost ferritin, folate, B12 and vitamin D need to be at optimal levels for any thyroid hormone replacement to work well :
Are you monitoring your blood pressure and temperature daily and has anything changed ?
I started on 1/2 grain NDT and each week thereafter increased by 1/4 grains with the intention of getting to 2 grains whereupon I was going to let this dose bed in for 6-8 weeks and then have a blood test so see if my T3 and T4 has moved at all from my bench numbers.
I got to 1 +3/4 grains and found myself a little hyper for me, so dropped back down to the previous weeks dose of 1 + 1/2 grains
After 6 weeks on this dose my blood tests showed a TSH at 00.01 - this is usual for me with a T4 at 20% through range and a T3 at 7.86 so slightly over range though I had no signs of hyperthyroidism.
I have stayed on this dose as I feel very well and know that if I need to see a doctor I shall wait a full 24 hour cycle between dose and blood test to allay any unnecessary comments.
You treat NDT to the relief of symptoms and not a blood test result and would think you probably need a dose increase as you still have symptoms, with this treatment option.
True NDT has a fixed ratio of T3/T4 and some people add back in a little T3 or T4 but this is when they are very close to their sweet spot. NDT takes time to build up in the body and do not think you have given it a long enough trial yet to draw any conclusions.
I'm with Graves post RAI thyroid ablation in 2005 and failing to acquire any treatment options other than T4 through my NHS service I now manage my lingering Graves, thyroid eye disease and hypothyroidism with NDT and prefer this option to synthetic dosing with with T3 - Liothyronine and T4 - Levothyroxine.
Thanks for your reply and yes I am guilty of not giving it long enough, I think the panic yesterday and today scared me, but I’m determined to keep at it this time. Now I have evidence my T3 tends to slip below range I need to give it a better shot. My BP and temp have been fine apart from these hot flushes which may be due to the menopause but worse after the medication.
Well yes, but the other issue to bear in mind is your Hashimoto's diagnosis.
As I understand things, when your immune system decides to attack your thyroid is the target and you are then liable to experience hyper swings during this transient phase.
I read of people with Hashimoto's feeling a " swing coming on " drop down their daily dose of thyroid hormone replacement to try and offset and reduce the severity of this attack.
With every attack your thyroid may well recover but at a slightly reduced capacity and you may find yourself needing a larger doses of thyroid hormone replacement to compensate as this destructive AI disease takes it course.
I read most people seem to need about 2-3 grains, but there again, we are all different, but I do think the better able you are to convert the T4 into T3 the less medication you should need.
NDT was the successful treatment for hypothyroidism for over 100 years before the blood test, ranges and guidelines were even thought of, and the doctor would simply carve off a little bit of pig thyroid gland for the patient to chew on, if that little bit worked, so be it, that was the patients dose, if the patient still had symptoms a slightly larger nugget was dispensed, so forth and so on, until the miracle happened.
Mind you, years ago the soil was rich in nutrients and we ate and lived very different lives.
Just a side line, if you enjoy running, you will need more T3 than someone whose exercise regime isn't as robust ; you need petrol in the tank before you go anywhere, but if you in 4th gear you will be using a lot more fuel - T3 - than someone in the slow lane.
You'll both get there, with a good MOT and service however !!!
You might like to look at the Elaine Moore Graves Disease Foundation website because Elaine has now done much research into AI thyroid diseases and has many suggestions on how to try and reduce this component of the disease which mainstream medical tend to ignore once you have a diagnosis, as they don't know and haven't any answers anyway.
It must be so difficult as consistency is so important when building up thyroid hormones and this disease can throw a big spanner in the works, throwing all your hard work out the window, with you having to build up core strength and confidence all over again.
I went back to synthetics after trying natural desiccated for seven months, couldn't quite make it fit and after recalls called it quits. Looking back on it I needed to add some extra Levo or T3 to it. The clear skin is missed. When switching back I stayed on the Levo for 4 weeks to level out and it was challenging. After that I started adding small amounts of T3. Trying to add the T3 before I was stable on the Levo made it difficult to differentiate the symptoms of low T4 or T3 or too much. From your previous results on Levo you were not taking enough. I'm not a health professional but if you want to try a Levo/T3 combo you'll have to find the right amount of Levo as your base to get started. Start with 50mcg for 6 weeks, then test. You may need to increase to 75mcg for 6 weeks, then test. If you start climbing to the top of T4 and you're still tired and T3 is not optimal then would be a good time to start adding T3. Going through the increases of Levo and waiting the full 6 weeks can be challenging and you have to tough out the symptoms. This was my experience. Best wishes.
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T3 taken away, looking for a new source please :)
Adding T3 to Levo
How Do I interpret test results when taking T3?
Help interpreting bloods please! Taking T3, I thought TSH would go down if anything?
