Hello there, I wonder if I can get some treatment and test result advice. I had three months of hyperthyroidism in early 2017 caused by thyroiditis. After a bit of a struggle to get a diagnosis and a referral down the psychiatric route I became hypothyroid and I finally was diagnosed in Oct 2017. At this time my nutrition tests were fine and TPO was negative. I’ve been trying to get back to health on levothyroxine with advice and support from this site. I considered a private endo appointment last summer and got some great advice from Shaws but in the end I was offered an appointment with the same endo in Oct of this year on the nhs. I was feeling much clearer headed and no fatigue on 137.5 micrograms of levo but was a bit jittery so agreed to try a reduction and agreed if I still couldn’t get back to health after that I would do a trial levo and T3.
When I last wrote in November I was feeling pretty good but my TSH was 0.08 on 131mg levo. My GP agreed I could stick to this dose as I felt the best I have but eventually I began to feel hyper and couldn’t tolerate it. So I tried a drop to 125.
This week I was still feeling jittery and my results came back as
TSH 0.08 (0.3 to 5) identical to six weeks ago
T4 lab didn’t do it – was 20.6 six weeks ago range 12 to 22
T3 5.5 (3.1 to 6.8) identical to six weeks ago
GP also asked for a TPO antibody test which for the first time came back positive.
264, cut off less than 100.
I saw a locum endo this week who was a bit monosyllabic. He said the plan in my notes was to try T3 at this point if I still wasn’t coping with levo. So he prescribed a six month trial of 75 mg levo and a month of ten mg T3 then increasing to 20 mg T3. I was in and out in five minutes because he was basically following the plan agreed in my notes with the permanent endo so didn’t get to ask anything. Can anyone advise if this sounds like the right treatment dose for T3 and if I should just drop my levo to 75 from 125 and start taking T3 right away or do I need to phase the reduction. I know it’s a good thing to get T3 on the NHS and I hope it helps with me improve further but I’m a bit scared of dropping my levo as I felt so awful before.
Also does anyone know why I’ve gone from 0 TPO antibodies last year to 264 this week? Does it mean I have hashimotos? My thyroid basically got wrecked by a severe autoimmune reaction to a vaccine that caused sudden onset subacute thyroiditis (with a hyper phase) followed by a crash in to permanent hypothyroidism so the cause wasn’t originally hashimotos.
Sounds like it was Hashi's to me. That's how Hashi's works. It starts with a hyper phase, and there are likely to be other 'hyper' swings in the future. Antibodies fluctuate all the time, so no surprise that the first test was negative and now it's positive.
I think your dosing is a bit drastic. If it were me, I would want to start by reducing the levo by 25 mcg, and adding in 5 mcg T3, both at the same time. Two weeks later, I would reduce by another 25 mcg levo and add in another 5 mcg T3. Then leave the levo where it is, and increase to 15 mcg two weeks later. And two weeks after that, go up to 20 mcg T3. Then hold for six weeks and retest. I think that would be gentler on your body.
Yes, it means you have Hashimotos so it is good idea to try reducing antibodies to lessen the risk of future auto-immune attacks and reduce any present inflammation. Thyroid antibody levels fluctuate depending on numerous factors such as what we consume, general well being, environment issues, etc ...
With regard to thyroid hormone replacement, ranges look related to the "free", in which case you have enough FT4 but also FT3. You are a good converter on Levo alone, so “jittery” could be down to low iron or low cortisol.
Have you had iron tested ? If not be mindful that introducing T3 with a risk of low iron could make you feel even more jittery. Also, be careful not to go over range in T3 which risks bringing a whole host of other unwanted conditions.
A common protocol would be to reduce your Levo as your T4 levels are optimum and introduce T3 in 5mcg weekly increments. Take T3 with your Levo and only increase if you feel ok. Members and myself have reported experiencing inner heat and a headache which lifted after a few days when first introducing T3.
You are lucky to get T3 on the NHS but if I had your results, I would be looking at ways to get existing thyroid hormones working as there is already enough. I am very sceptical that adding T3 to your Levo is your answer to achieving well-being.
Thanks for the reply, that was my thinking too, I seem to get to high end of the t4 and t3 ranges on about 120 mg of Levo but could never shake off brain fog and dizziness, fatigue and muscle pain goes at about 100. I couldn’t tolerate 125 at first as it sent me hypo but this eased. It’s been really hard to find the sweet spot. I was tempted to see how I do on 115 Levo and concentrate on lifestyle and nutrition. I notice alcohol sends my t3 crashing so if I drink it’s hard to get stable.
I agree with Radd. It really needs FT4 and FT3 tested together to see how well (or not) you do convert. And it needs Vit D, B12, folate and ferritin testing before starting T3 if you need it.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
You can possibly help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. Optimal nutrient levels are needed for any thyroid hormone to work, to finding out your levels for nutrients and FT4/FT3 before doing anything else is a good idea.
Thanks for the reply. I’m in good range on b12, d, folate and ferritin. My last t4 was about six weeks ago and was 20 (12-22). This converts to about 5.5 t3. At this level I feel hyper. I do think you are right in that I don’t seem an obvious candidate for T3. I can get pain and fatigue free on about 100mg Levo but need more to get some relief from brain fog and zombie head but by 125 I’m beginning to feel hypo. Feel stuck!
Vit D - 125nmol/L according to the Vit D Council, and 100-150nmol/L according to the Vit D Society.
B12 - because deficiencies begin to appear in the cerebrospinal fluid below 550pg/ml that would be the minimum for serum B12, but for brain and nervous system health (and prevention of disease in older adults) serum B12 levels should be maintained near or above 1000 pg/ml according to Sally Pacholok's book "Could it be B12?"
Folate - at least half way through range
Ferritin - half way through range (minimum of 70 for thyroid hormone to work)
If FT4 of 20 (12 to 22) and FT3 of 5.5 (3.1 to 6.8) were tested at the same time from the same blood draw, then FT4 is 80% through range and FT3 is 64% through range and your T4:T3 conversion rate is pretty good at 3.6 : 1 (between 3:1 and 4:1 is considered good conversion).
Yep, that’s my conversion rate on my last draw. If I try to boost B12, D, folate and iron is it best to supplement or try to do it with food? I’d be happy to add in more liver, oily fish etc
Vit D we can't make naturally in the winter so we draw on the store we made during the summer. So most people need to supplement during the winter, but the dose does depend on testing your level in November, then again around April to see we need to lower the dose.
I don't know how much folate rich food you'd need over and above what you normally eat to raise the level, again it depends on current level. Likewise B12.
If iron is below 70 but not right at the bottom of the range, eating liver, black pudding, liver pate, etc, should raise the level.
I wonder whether the jitteriness could in part be about magnesium deficiency. A lot of people can get a feeling of palpitations when deficient. I had that recently and have been taking magnesium after reading the ‘magnesium miracle ‘. Brain fog is common with deficiency too. It’s not straightforward which magnesium to use as some have a laxative effect and not easily absorbed but try a combination one. Magnesium theanate is supposed to help cognitive functioning for example. Could also try a regular Epsom salt bath too which ups magnesium levels and v calming too.
My endo suggested reducing from 125 to 100 Levothyroxine when I had a short trial of T3. He started me on 20 T3 straight away but split into 2 doses. I now take 100 Levothyroxine on 4 days and 75 on the other 3 days each week and take my 20 T3 all in one go with the Levothyroxine one hour before breakfast.
I’m feeling better than I’ve felt for years. Starting on 20 T3, rather than building up was a bit overwhelming at first. So many symptoms disappeared within days but I felt a bit spaced out, more alert than I’d been for so long was a bit of a shock.
Yes you have Hashimoto’s like myself. It’s the antibodies from the autoimmune disease (Hashimoto’s) that are causing your hypothyroidism. It’s considered sub clinical Hypothyroidism.
There is no cure - per my consultant endo, it just means it can cause more devastating effects for you systemically -like myself. Apparently Hashimoto’s is hereditary and the older you get the higher the antibodies can increase which I was told could mean more levo and possibly T3.
Hello Lisa, thanks for the reply. I didn't actually ask for T3 on the NHS, the endo I first saw was very nice and explained because I had an unusual presentation ( became suddenly ill with hyperthyroid symptoms within a few hours of a vaccination and then became hypothyroid with a TSH going from 2 to 16 within a few weeks) and because I couldn't tolerate levo after a year or so if trying they asked me to try levo for a few more months. When I still didn't get better and still couldn't tolerate a treatment dose of levo the locun said it was time to try a trial of T3. From reading other people's experiences I think I've had an easy ride with the NHS. My GP and endo have been very busy helpful. This might be because my condition was first diagnosed by an immunologist as my thyroiditis following a vaccine it's quite rare. I'd also had to see a neurologist and psychiatrist who. All three emphasised the need for me to be managed by an endo. I think the psychiatrist was tired of seeing me go round the bend each time my levo was increased. Hope that helps and hope you get the treatment and care you need.
Great lol, thx. Thankfully I’m under a great endo who I follow up with again in Feb after extensive blood tests, also may have celiac disease secondary to thyroid now but at least I’m in right place. My gp was uneducated and my physiatrist is fabulous x
Hello Kitten44, here's s reference. Not actually sure. What the implications are and it's a very small study but did make me wonder if my poor health on T4 was in part due to T4 provoking an autoimmune response and not simply poor conversion to T3. If that's true I'd expect to see a drop in TPO antibodies now my levo has been reduced and I'm on T3. I'll have a look to see if there's any research on the difference between inability to tolerate levo as a distinct problem to poor conversion.
Hidden As I read it -and I could be wrong - the study you have linked doesn't support your assertion that "levo can cause the body to produce tpo antibodies. Weird huh?" I read it, that the inference is that if you are antibody-positive you are likely to need a higher dose of Levothyroxine than if you are anti-body negative ie the presence of antibodies has an effect on your need for Levo, and not Levo having an effect on antibodies.
It's not clearly expressed in the abstract to be fair Hidden , but if you look at the full paper, the detail adds to the clarity of it. For instance:
"The degree of hypothyroidism is an important factor in determining the need for thyroid hormone replacement therapy. Residual thyroid tissue that functions is an important factor in determining the degree of hypothyroidism. Some studies have shown that the degree of damage in the thyroid tissue is associated with antibody titers. Antibody-negative autoimmune thyroiditis has a milder course, while the presence of TPOAb is associated with an increased risk of overt hypothyroidism.
From all these data we can expect that patients with higher antibody levels may need more hormone replacement."
That last bit is very clear. I'm amazed at how wrong I got it. I was over medicated on T4 and about to decrease T4 and start T3 when I posted. my thinking is clearer now but it's actually fascinating to see myself completely unable to properly grasp this. Makes me appreciate the cognitive impact of Hashimotos.
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