Thyroid UK
90,415 members104,777 posts

Finally Endo is listening

I agreed to the Grand Experiment of reducing thyroxine dose to 128 mcg per day (I got her to write the script for 150 mcg tablets but skipped one per week to get to average of 128 mcg). This started mid August 2017. By October I was losing hair like crazy. I went from pony tail to rat tail and removed a couple of wig's worth from the bathtub plughole. Recently there's no hair but I am half bald so there's not much more to lose. (I told her maybe I should shave my head that way there's no hair all over the place.) I was not having any urge to have a bowel movement so basically my colon had to be stuffed full before it started peristaltic movements... once a week! I told her good thing I eat a LOT of vegetables or I would have been having to do manual extraction of concrete balls.

Skin dried out, energy went down the tubes, had to sleep 10 hours out of every 24..... etc. etc. I already posted this stuff over here last week. I need to post it here to organize my brain.

January 8th blood was drawn. I did not take thyroxine on January 7th (as per skip one dose per week) and took it after the blood draw on January 8th, 9 a.m. Since then I've been taking 150 mcg T4 7 days per week but I did not volunteer that information. It took a couple of weeks and it has made a big difference. Good thing too because I wouldn't have been able to advocate for myself today.

January 8th: TSH was 0.24 (range up to 3.0) fT4 was 16 (range up to 24) and fT3 was 3.2 (range up to 6.8... I think bottom of range is 2.9) Definitely not 'stellar' (her favourite word). On 150 mcg per day the TSH was 0.02 and fT4 was 22. (she didn't get fT3 done those times.)

I have maintained for quite some time that my pituitary is cr*pped out. LH and FSH are both low as if I am not post menopausal. I use 2/3 dose of HRT transdermal cream and that is the dose that keeps the hot flashes at bay. So it's not a full dose and LH + FSH shouldn't be as low as they are. Morning cortisol has been just above Addison's (as she put it then, 'not stellar'.) (Back in the early 1980s prolactin was high but ended up normal in range once I started taking thyroxine.)

What I did not tell her today because I forgot is I pee like a race horse. I drink, pee, drink, pee. It's as if nothing stays in the body. Hemoglobin was 153. I have not been eating any red meat for 2 years now. I think it's just dehydration. It's been up to 162 in the past and when I'm still as hydrated as I can get it's 147. As far as I'm concerned it's the posterior pituitary not doing its job. Mild diabetes insipidus. A couple years ago ferritin was high so that's why I stopped eating red meat. Liver function tests are normal. Phew. It's not because the liver is pooched that ferritin is high.

She agreed to put me back up to 150 mcg. Yay.

She filled out a lab requisition for a bunch of hormone tests including ACTH and cortisol and LH, FSH, estrogen and whatnot. She wants me to get this done SOON! That's the 'boo' part.

Big problem. A couple of years ago after finding out my cortisol was in the dumpster I asked another doctor to help me out. I take 5 mg of prednisone every day. When I told this to the endo she freaked out so since then I don't admit to it. I have terrible arthritic horrible pain in my back. A herniated disc is pushing on the spinal cord and the arthritis at that location is more bad than the rest of the back which isn't good either. I made a deal with this other doctor: when my thyroid hormone replacement dose is ideal, I am working on building muscles to support my back and maybe then the pain will stop or be reduced and I can stop the prednisone.

Having agreed to the Grand Experiment (which I knew would be a ridiculous failure), my pain was as if I'd been beaten by a baseball bat. U.K. citizens please google images. ;) I had been working out for several months with a rowing machine I bought plus working in the allotment a couple of hours several days per week. I was feeling good and stronger but in October I noticed that I was getting really tired later in the day after working out. I had to stop the rowing machine exercise because there's choices: either try to do my job or exercise. Can't do both. By 2 p.m. I was clock watching and dreading that I still had three hours left in the work day. I still walk up many flights of stairs every day but I can't do more than that. Benefit of this is no low back instability and heart rate was 65, blood pressure was 135/71.... a bit weird. With the lower number at 71, the higher one should be about 125. A balanced blood pressure with the higher number at 135 should be 80. So that's off.

Well, now I need to wean off the prednisone don't I? I can't go in a week to get all these blood tests done or cortisol will be artificially off. Cortisol will be artificially low until the adrenals kick in and do whatever pathetic job they are capable of doing. I told her I'll get the bloodwork done later next month.

It seems she's somewhat accepting that the pituitary isn't doing much of anything. TSH was 1.0 in 2012 (range up to 3.0) when I was on 112 mcg T4 and fT3 was below range and I didn't want to live anymore. But she wants to check if it's really totally pooped out.

If any of this helps anyone then that's good. We have to keep on keeping on until someone listens. At least she's listening after all these years of fooling around with various doses of T3 and T4. T3 doesn't work for me. It ramps up the fT3 to over 5.0 and my body just isn't used to that. But clearly fT3 of 3.2 is dire.

Just thought I'd give an update and to keep my sanity. Thanks for reading. Input is welcome.

5 Replies

What a 'grand' experiment. You were a good sport to go along with that. Hope you get all sorted out!

1 like

Hi gabkad so sorry that you have not been too good lately. You are one of the ones that seem good at giving advice to others, but it is amazing how confusing it can be when we are having problems ourselves. I hope it all resolves for you. Take care when coming off Prednisone. I think greygoose is knowledgeable about this.

1 like

Thank j_bee. It's a 'continuing education program'. Life, that is. ;) Maybe I should go donate blood except I'm not sure I can. I think they've lifted the 'mad cow disease' (lived in England during that time) prohibition.


I just checked Canada Blood Services and I can't donate blood. So much for living in England back in 1983 - 1984. :(




You may also like...