Thyroid hormone resistance

[Betty41]

Anyone been diagnosed or treated for this condition?

[shaws Administrator]

I doubt that any of our Professionals are aware of such a condition. Dr Lowe (deceased) had resistance himself and also treated patients who had it. This is a link which might be helpful.

web.archive.org/web/2010103...

The current professionals seem only to take notice of the TSH and not patients' continuing symptoms.

[helvella Administrator]

I think it's Hidden  who is our resident best informed member.

[helvella Administrator in reply to helvella]

Talking to myself again!

Sandy12 has responded to numerous posters here over the years with a particular area of experience. Now I have just been informed that Sandy12 has put all their research into a book:

Impaired Sensitivity to Thyroid Hormone (Thyroid Hormone Resistance): A Cause of Fibromyalgia, Chronic Fatigue, Mental Health Issues and Many Other Conditions

amazon.co.uk/Impaired-Sensi...

I have not read it so can make no comment on its content. This is by way of information - and is not an endorsement or advertisement.

[Tinx71 in reply to helvella]

Hi,

 I bought Sandy12´s book the other day as I was looking for answers. It´s got everything you need to know about thyroid resistance backed up by all the studies linked to the end of each chapter.

 It didn´t answer all my questions as I have been experimenting with T3 for the past year and the only blood test results I have are with taking T3 so my TSH is suppressed.

 I wish I knew to have asked my UK doctors at the time about blood test results, I felt well then and hated "wasting time" so I´d just tell them I´m fine (I was on 200mcg T4) and say see you in 6 months.... my troubles began when I moved to London and they insisted that 200mcg was going to kill me so reduced eventually to 125mcg and since then everything has gone crazy

Hope this helps?!?!

Tina

[Rachel_81]

Hi,

My endo diagnosed me with thyroid resistance, you can search for my older posts to read about it.

Abreviated version is I had sudden weight gain after over a decade same weight, had swollen face, arms (top part), almost absent period, terrible constipation (was dependent on dulcolax), memory loss and fog, headaches (every day), dry skin, brittle hair, chronic anemia, nausea, cold feet/hands, bluish skin etc. could go on and on.

My endo (I live in Portugal) suspected that these were hypo symptoms, but my TSH was only 2 something (can't remember). She tried to rule anything else out, did ultrasounds (for PCOS), blood work, etc. Trialed me on Levothyroxine and slowly increased, slight hyper symptoms till I adjusted at each level. Started improving after a couple increases, bloodwork every 6 weeks, she has my TSH suppressed and T3 and T4 at top of the range, seems happy with diagnoses. I am very happy, on levothyroxine and T3 (112mcg and 25mcg), face isnt puffy, hemoglobin is now 12, headaches stopped last December (I am 34 and had them since early teens), constipation is gone (go once a day!!), dont feel so cold and sluggish, can remember shopping lists, my schedule, periods still hit and miss, hair is starting to feel shiny at the roots (think it might be getting lighter?), knees are pink instead of bluish, rarely get nausea. I also notice my mood is more even and feel happier, sleep a whole lot better, deep restful sleep.

She offered genetic testing but said that only some of the genetic causes are known, also worried about genetic testing because the genetic info can be used by the lab as it sees fit. I am happy with my diagnosis because for me it's as simple as, felt like my life was not worth much to feeling normal, happy and active, I guess for me that is proof enough.

The endo says she has only had 3 patients with thyroid resistance, and counts me as third, she is in her 50s. All 3 had dramatic improvement in life quality.

Hope this helps!

Rachel

[Rachel_81 in reply to Rachel_81]

Forgot to add, my doctor calls it peripheral resistance to thyroid hormone.

As in, you have a normal amount of hormone but your cells cannot use it as effectively as they should.

[Rachel_81]

Another thing I forgot (sorry, trying to do two things at once), I used to feel jumpy, hyper-vigilant, I remember feeling pressure on my chest and my heart would race at the slightest stress. I nowadays have a higher resting heart rate (was 59 is 76), but I feel calm, I don't get my heart pounding in my chest at the slightest effort, I am less hyper-vigilant than before going on medication.

I expected to feel more "wound up" with medication, this was one of my concerns, as it was exhausting being like that, but the opposite is true, I am much more relaxed generally now, I don't feel emotionally overwhelmed, tearful or nervous.