I have posted here before but in short....I developed symptoms of hypothyroidism after a very stressful period last year. All of my labs are within range but my doctor has agreed to a trial of T3. I am now on 180 mcg compounded T3 and there have been no positive changes. My main concern is myxedema, but also loss of muscle mass, fatigue, hair loss, poor memory and a bunch of others. I have read that once one is resistant to thyroid hormone it is hard to overcome.
I had an adrenal test done last year and urine and blood showed high cortisol, however saliva was all within range. My Vit D is suboptimal but I am taking 5000 IU per day (it is 75) and ferretin is 23 but am also supplementing with iron.
Does anyone have any insight into this?
Am I making the resistance worse by taking this dose?
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suzannai
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And what kind of iron supplements are you taking, at what dose and what frequency? And how long have you been supplementing? Iron can sometimes take a year or more to raise to healthy levels.
Yes I have and it was above the normal range. 700 or so. I supplement with 5000 mcg daily at least if not more sublingual and use to inject 5000 mcg twice per week.
suzannai, thyroid hormone resistance is tricky and not as well understood as endocrinology thinks it is.
Dr. Refetoff wrote his first paper in 1967 but they were looking primarily for genetic defects. They have identified about 170 or so genetic glitches so far, I'm sure there are many more. Some light reading.
sandy12 had posted about his experience with his son but I haven't seen him in about 4 months. His son didn't see any effect until 200mcg so it can vary considerably. I've talked with a young woman who needs 300mcg and at that dose also has to take beta blockers. She is very unusual to say the least. The fact that you are taking 180mcg of T3 and don't feel anything would seem to indicate some kind of glitch. This is some info from sandy12 about the major research center in the UK.
"The main centre in the UK for research into Reduced Sensitivity to Thyroid Hormone is at Cambridge Addenbrooke’s Hospital. Their Endocrine Laboratory is joint NHS/ Academic Department of Clinical Biochemistry and provides a full Clinical Biochemistry service to the hospital, and is part of the Cambridge University Clinical School. The department provides a comprehensive suite of biochemical and genetic tests for the investigation of unusual thyroid function tests including thyroid hormone resistance, familial dysalbuminaemic hyperthyroximaemia, ‘macro-TSH’, anti-thyroid antibodies and thyroid binding inhibitory immunoglobulin.
The Departments of Clinical Biochemistry and Endocrinology have been designated as a Supraregional (National) Assay Centre for the investigation of patients with unusual thyroid function tests and disorders. Addenbrooke’s provide care for patients with a wide array of endocrine disorders. Patients are seen in the Institute of Metabolic Science (IMS) in the new purpose-built Wolfson Diabetes and Endocrinology Clinic (IMS WDEC). This provides state-of-the-art facilities as well as close links with world-leading researchers, who undertake translational and clinical endocrine research within the IMS Metabolic Research Laboratories (IMS MRL)."
This is a tricky one to deal with and usually you don't find a lot of help. The fact that your endo is working with you is a good sign. PR
Thank you for this. I have corresponded with sandy on this months ago. For me all was well until a stressful event which triggered the symptoms, of which I have many but the tell-tale sign is the myxedema which points heavily to thyroid. 180 mcg is what I am taking but feel I may need to go higher while at the same time am looking into other things - progesterone, cortisol, heavy metals, pyrolle disorder (KPU), nutrient deficiencies. There is a glitch somewhere for sure. I have seen numerous endos and all discounted that I am hypo as labs were all normal but I did find a DO to prescribe T3. My main concern is whether or not this high of a dose will cause further resistance. Sadly, you are right, there is very little help in this area
suzannai, taking T3 should not cause resistance from everything I have read. The problem is usually getting enough T3 to overcome the resistance before the docs freak out. If you slowly titrate upward and listen to your body you should be OK. If you get hyper symptoms then reduce your dose. Checking all the other bases, nutrients and so forth, should help to eliminate contributing factors. Good luck to you. Let us know how you get on. PR
That is a relief to hear that I a not making things worse by taking more T3. I am at 180 but plan to increase it one pill which would take me to 225 mcg and see how I feel. I was able to tolerate the increases very easily. My HR has always been high (over the last year pre T3) so this is a useless way to monitor but I will rely on BP and temps. I will continue to check other things including pyrolle disorder which can cause low zinc which may be a culprit. Thanks again and I will let you know how I get on.
suzannai, I would suggest cutting the pill in half, at least, 45mcg is a big step. A 12.5mcg, or so, step at a time might be more reasonable. You might check Paul Robinson's site for info. PR
It is a capsule unfortunately so it is impossible to open. I am seeing my DO next week so will discuss with her a prescription for a smaller dose so that I can increase in smaller increments aswell as possibly some beta blockers just in case.
I originally was following Paul's protocol and purchased his book, however there was a nagging feeling that increasing in 2.5 mcg increments every few weeks was going to take me forever to get to a normal dose and had I done that I would still be at less than half the dose I am taking now.
I take my dose all at once - 180 mcg in the am but have also played with 90 mcg bid without any changes. To overcome resistance as I understand it based on Lowes work, one dose per day is the way to go.
I am also wondering about zinc and B6 if I am positive for pyrolle disorder and how this could play a role in the manifestation of hypo symptoms mainly facial edema, muscle loss.
suzannai, it is true Dr. Lowe took his dose (150mcg) all at once and that seemed to work just fine for him. The vast majority of people do better multi dosing, 3-5 times a day with 3 usually being the minimum. At a minimum of three you get better distribution without going way over what the body would normally handle. With you this may or may not be applicable. Paul Robinson's dosing regimen was for people who did not have thyroid hormone resistance, but a lot of what he writes about may still be useful such as the problems you can run into. Since you are already up to 180 I would titrate more slowly from here on out. Don't rush it, there is no point in doing harm to yourself. The problem is that there isn't a really good template to work from for this situation. Remember, there is no one size fits all. PR
Thanks PR. I feel no difference on this high of a dose and wonder again if I should split it. I decided on the one daily dose idea to get a sense of what my body is able to tolerate. Is it possible that I am just not absorbing?
suzannai, with thyroid hormone resistance it seems to be a case of getting enough to overcome the resistance. Sandy's child didn't get an effect until 200mcg. There is no way to tell what dose will work for you that I know of other than just slowly titrating up to the point where it works. Cleaning up your diet can be helpful and should have an effect, but to what extent I don't know.
The troubleshooting part of Paul's book can be helpful for various things to look at. I'm afraid there just isn't a lot written about dealing with thyroid hormone resistance. The link I gave you for Thyroid Manager will give you endocrinology's viewpoint. PR
I wonder if this is what they call on some sites "pooling" due to low iron or cortisol issues.
I am going to look into other things like nutrients, including iron, hormones, aswell as metals and see. There is a glitch somewhere along the road but yes, I does seem that most with resistance have to go above 200 mcg. Thanks again and be well.
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