Turner's Syndrome

[MommaBear]

My 15 year ol daughter has Turner's syndrome and has zero ovary function. (Other dx is epilepsy, hashimotos thyroid and hashimotos encephalopathy which caused brain damage)

She was on estradial patches a couple years for breast development until insurance changed brands and every Sunday she would put on a new patch she would have a seizure. And she gained 30lbs in a couple months. So I stopped the patch. The Dr's got the original brand back but she gained even more weight when we started back up. So I stopped that.

The next step is to start dosing progesterone to start her period and give her a dose of bone density to protect from osteoporosis at age 20.

Being cognitively impaired (she's around the mentality of a 2nd grader) I don't like the idea of having to deal with periods and she isn't keen on the idea either. So the endocrinologist says 'oh we will just put her on the depo shot to stop her period.'

I'm not keen on this method or the endocrine system of care. And I don't agree with things like the deposit shot as I have several friends and family who reacted badly to it.

Any thoughts among you all here on a different course to help her get the hormones her body needs?

I study and practice herbalism and know that red clover gives a good spectrum of the estrogen hormones In balance. And with all the estrogens in our life I'm not too worried about that one. I'm needing to understand progesterone dosing and at what level is needed for health. And if we can dose progesterone without having to deal with periods? She naturally would not go thru puberty (some girls do but hit menopause by early 20's)

 

[tara]

It looks like you have a complex set of issues to deal with. I don't know enough to answer our question. But I know progesterone can have somewhat differing effects on different people depending on timing and dosage. There is a thread discussing progesterone as contraceptive - not saying you should use it this way, but it might give some more ideas of what can go on with progesterone. Progest-E For Contraception

Thisis how it looks to me, but I'm not sure I've got it all right, so maybe someone more knowledgable can fill in. Apparently the body sees very high levels of progesterone as a signal indicating pregnancy, and will not initiate another pregnancy in those circumstances. I think it may be sudden drops in progesterone that trigger menstruation. Some women take continuous progesterone and it stops menstruation. In this situation, stopping progesterone supplement for 5 days or so a month can allow menstruation to occur, and stopping it for more than 2 wks per month can allow the cycle to continue to ovulation and allow pregnancy. Some of us can take progesterone continuously and have regular menstrual cycles. Missing doses can trigger menstruation for me. Dosage is probably important and probably varies a bit from woman to woman.

 

[MommaBear]

Thx for your reply! So is there a certain amount that is necessary for health and balance?

 

[tara]

So is there a certain amount that is necessary for health and balance?

The ratio between estrogen and progesterone is apparently important.

Along with whatever other good sources of information you have, if you haven't yet read Peat's articles on estrogen and progesterone, I'd recommend them - you can find them here:
Ray Peat

 

[MommaBear]

Yes! I am reading those articles as I find the time. my youngest two are a handful

 

[Giraffe]

Other dx is epilepsy, hashimotos thyroid and hashimotos encephalopathy which caused brain damage

Is your daughter getting thyroid supplements? Do you have thyroid lab tests?

 

[MommaBear]

She is on desiccated thyroid. I quit the endocrinologist for her hashimotos because labs don't tell the picture. Plus the fact I came across info about hashimotos encephalitis and approached the Dr about it because my daughter was exhibitin stroke symptoms. The Dr told me it did not exist and her thyroid was fine on synthroid.

I watched my daughter decline in function and cognition for two yrs. She disappeared. Her IQ went from 80 to 43. Then she went status epilepticus and the neurologist said we were at the last resort... to shut off her brain and try to restart it. I had to decide the next morning. Thankfully the team came in and said they wanted a last ditch effort to treat her for a rare thing called 'hashimotos encephalitis '. OMG I nearly kissed the doc and said YES! It exists? He assured me it existed because they found treatments work. Crazy huh. We had months of therapy to get her walking and talking and functioning again.

I started her on desiccated thyroid and her seizures are less and less, especially since we stopped the estrogen patches.

So long story short.... I do not believe labs are accurate to tell thyroid function. And I have a hard time trusting doctors anymore.

My docs always stopped my thyroid med because my tsh went to .001 and my symptoms were still severe hypothyroid with high incidences of heart palps and panic attacks.

Since I took it into my own hands and increased my dose quickly and high enough, I was able to not suffer heart palps or panic but only rarely. And when I do, I know to take another desiccated thyroid and the palps stop.

 

[MommaBear]

Wow.. I just read the growth hormone article... my daughter was on growth hormone since around age 7 when dx with Turner's Syndrome to help her grow. I wonder if everything is opposite with turners girls? They typically have low/no hgh production, low estrogen and progesterone, early osteoperosis, and shorter lifespan.

 

[Giraffe]

So sorry for your daughter. It's a lot you and your family have to go through.

She is on desiccated thyroid. I quit the endocrinologist for her hashimotos because labs don't tell the picture. Plus the fact I came across info about hashimotos encephalitis and approached the Dr about it because my daughter was exhibitin stroke symptoms. The Dr told me it did not exist and her thyroid was fine on synthroid.

I have never heard about Turner's syndrome before you posted here. I searched pubmed a bit (just started). It looks like bad liver function is quite common in TS. The liver is the main place where T4 is converted to T3 (the active form). With a sluggish liver the person on T4-only treatment (synthroid) is likely to be even worse off. Synthroid suppresses the TSH, so less T3 is coming from the thyroid gland, and the excess T4 gets cornverted to rT3 which interferes with T3.

I started her on desiccated thyroid and her seizures are less and less, especially since we stopped the estrogen patches.

This was a good move to start her on desiccated thyroid. Desiccated thyroid has a ratio 4 : 1 (T4 : T3). You could try if she's doing even better with a little extra T3 (which is hard to come by, unfortunately).

May I ask what effect the estradiol patches had on your daughter before the problems started when you had to switch to the other product? You mentioned they were used to initiate breast development. Were there any positive or negative effects you noted with the patches?

So long story short.... I do not believe labs are accurate to tell thyroid function. And I have a hard time trusting doctors anymore.

I'd like you to read these two posts and the two interview transcripts that Mittir has linked.

Hashimoto's (Autoimmune diseases) and Peat Protocol
Thyroid questions and theories....

If you have current lab tests, I think it wouldn't hurt to post them here.

 

[Giraffe]

This study has been published last month:

Selenium Status in Patients with Turner Syndrome: a Biochemical Assessment Related with Body Composition. - PubMed - NCBI

The patients with larger waist circumference, body fat percentage, body mass index, and waist-height ratio showed lower glutathione peroxidase enzyme activity (p = 0.023). The present study shows that most patients with TS are deficient in selenium and that those with a greater accumulation of body fat have a lower GPx activity.

Check here for more information about selenium.

 

[Giraffe]

Wow.. I just read the growth hormone article... my daughter was on growth hormone since around age 7 when dx with Turner's Syndrome to help her grow. I wonder if everything is opposite with turners girls? They typically have low/no hgh production, low estrogen and progesterone, early osteoperosis, and shorter lifespan.

Having read a little more about Turner's syndrome I started to wonder if the poor girls aren't just born terribly hypothyroid. I wondered if their levels of growth hormone are actually determined or if the alleged lack of growth hormone is just another medical myth. I found this article on pubmed:

Recombinant human growth hormone in the treatment of Turner syndrome

The growth impairment in the majority of TS individuals therefore, is not due to GH deficiency although a small minority of TS girls may manifest classic GH deficiency (abnormal GH concentrations after pharmacologic provocation) in addition to their abnormal karyotype.

Despite the fact that GH deficiency is not usually present in TS, the GH – insulin-like growth factor (IGF) – IGF binding protein (IGFBP) axis is disturbed.

Treatment of the short stature in TS has been historically based on psychosocial issues since it is not evident that there is an advantageous organic health benefit by being taller with TS.

The results of studies comparing final adult height with vs. without treatment seem inconclusive.

The author thinks that the patients got estrogen treatment too late, but it's actually progesterone what the Turner girls are missing.

Also, whole body and lumbar spine BMD [bone mineral density] in adult TS patients who received only hGH therapy without hormone replacement therapy (HRT) with estradiol until the age of 17 showed decreased BMD which was not improved with HRT during adulthood since normal peak bone mass in these patients was never attained because of the delay in HRT (Suganuma et al 2003).

 

[MommaBear]

Thx! Interesting study. She usually takes selenium, 200mcg a day. I wonder if milk thistle seed would help glutathione levels.

May I ask what effect the estradiol patches had on your daughter before the problems started when you had to switch to the other product? You mentioned they were used to initiate breast development. Were there any positive or negative effects you noted with the patches?

The first 6 months of the patch were fine. The doses were miniscule. She was still recovering from status epilepsy and was on enough drugs to tranquilize an elephant for nearly 9 months aND she lost her appetite to the point of 'failure to thrive'.

After The patch increased and the brand changed and off all seizure meds, she increased appetite like crazy, gaiming weight like crazy. We stopped the patch for 4 months and she lost 10 pounds. BUT gained it back and more when we started the patch back up another month, so I am reluctant to continue . She has struggled being overweight, exhausted and hungry for the past year. I encouraged the protein and good fats and saw no improvement. I'm now upping her sugar intake and rearranging our diet to peating for everyone.

 

[Giraffe]

Growth-hormone Deficiency in Iatrogenic Hypothyroidism

Not directly related to Turner syndrome, but I found this case study quite interesting.

Utiger et al. (1962) found impairment of growth hormone response to insulin-induced hypoglycaemia in two out of five patients wth hypothyroidism, and they and Iwatsubo et al., Root et al., and Brauman and Corvilain showed that the abnormality may be corrected by treating the hypothyroisdism (Harrison et al., 1968).

We report a case of iodide-induced hypothyroidism and dwarfism because on correction of the hypothyroidism at the age of 24 years not only was the growth hormone response to hypoglycaemia restored but the patient grew 23 cm in height and developed puberty.

This boy was on meds since the age of 7 years. At age 11 he was found to have a goiter, but was "clinically" euthyroid. At age 24 he was referred to hospital with signs of hypothyroidism. The meds were discontinued. A couple of months later "all features of hypothyroidism had remitted". Puberty developped at the age of 26. By the age of 28 he had grown 23 cm in height.

 

[MommaBear]

Interesting research!.. some good things to digest a bit here.

hashimotos was diagnosed around age 7 (the only symptom she exhihited was retarded brain function but within normal lower limits but she also had lead poisoning when her kidney went nephrotic and she had to go on chemo drugs which depleted her calcium). so not sure which caused her problems or maybe it was a perfect storm type incident.

Her initial pediatrician did some unique tests and said her cells were low on nutrients and especially the B's.

She has regained a lot since starting on higher doses of thyroid and progesterone, pregnelone , haidut's b complex , k2, a, d, e...
I did drink soy shakes while pregnant with her and figured the soy did the damage.

SO you are thinking maybe low Progesterone during pregnancy caused her chromosomes to mess up and develop turner's syndrome? (an x is missing which is supposedly the cause for ovary failure, short stature, horseshoe kidneys, bone deformities, and other typical turner issues?).. I was told hashimotos thyroid is common, potential for other autoimmune problems and diabetes...not sure if type 1 or 2 is typical (I learned type 2 is directly related to low thyroid).

I emailed Dr Peat. this is his response...
The supplements you mention should be helpful. Having some seafood once a week will usually maintain selenium in the long run. Do you check her temperature and pulse rate to see how she responds to the thyroid? Has she had tests for vitamin D, TSH, progesterone, cortisol, prolactin? How was her ovary function determined? My impression is that giving the syndrome a name generally keeps doctors from investigating the actual situation. Every type of tissue can produce estrogen, so absence of ovaries doesn’t create an estrogen deficiency, but it’s likely to produce a progesterone deficiency. Good thyroid function can allow some progesterone to be produced by the adrenals, skin, and brain, if there’s enough cholesterol and vitamin A, even if ovaries aren’t functioning. Progesterone is likely to improve her brain function; the natural cycling of progesterone helps to maintain its restorative effects.

 

[Giraffe]

SO you are thinking maybe low Progesterone during pregnancy caused her chromosomes to mess up and develop turner's syndrome?

I think that hypothyroidism and low progesterone go together. A lot of the symptoms described for Turner's syndrome are symptoms of hypothyroidism. I think that Peat is right, when he suspects that "giving the syndrome a name generally keeps doctors from investigating the actual situation." Some of the Turner's girls develop puberty and get pregnant later without having had any hormone treatment.

 

[burtlancast]

Regarding the IQ problem, you should look into the work of Henry Turkel:

" Turkel clearly demonstrated that one of the ‘worst’ genetic defects - trisomy, leading to Down syndrome - could be modified though what is largely a nutritional program with moderately high-dose supplements. The program never corrected the basic genetic defects in Down syndrome, of course, but it did correct much of the collateral biochemical consequences, leading to improvements in cognition, physical health, and appearance. Turkel was probably the first to show that nutrition could improve genetic programming, and that genetic predeterminism was limited.” (Jack Challem)"

It works for trisomy, but as well for the other chromosomial syndromes affecting IQ.
http://www.doctoryourself.com/turkel.html

 

[MommaBear]

I had read that a few years ago! ^^I believe she used vit c to increase intelligence... i just bought more vit c the other day. After High use it seems to hurt our bellies so we stop every so often.

the thing I didn't do back then was the hormones and enough thyroid. plus eating. she was on so many med at one point that her appetite was gone for a few years. she was hospitalized later for failure to thrive so I'm at the refeeding stage with her (and myself) . the 50# gain Is horrible to deal with but I'm believing the healing will happen ! she is slowly improving her humor for now! just can't get her motivated to do anything but play with her toys and color. making her sit outside is so mean! lol. but we are roadschooling in an RV to stimulate everyones' brains.

For myself.. I'm pretty sure untreated low thyroid reduced my intelligence too. since treating it properly my depression, memory loss and brain fog are gone. I went thru my whole adulthood wondering why I lost so much! pieces are starting to fall into place now!

Thank you for your research and thoughts! helps me to know Im on the right path!