I lost my trust to doctors, what should I do now, please help... (25/female)

[Cofy]

Hi everyone! I am very very confused. The latest endoc I visited said I have PCOS according to my LH and FSH levels. My gynecologist said I don't have such problem. But this endoc says the LH bigger than the FSH means I am PCOS.

My LH is 7.51, and my FSH is 6.11 . According to every article I found online, it says LH/FSH should be bigger than 2-3 to say that this person has PCOS. My ratio is nearly 1.23 !

I don't believe what this endoc said. The last 4 mounths are the only months in my life I have experienced irregular and missed periods. I am not takimg the PCOS medication he gave me. I insisted on searching my pituitary functions and reason behing why my thyroid levels are low - but somehow doctors react agressive to such offers. I still believe the complaints I have are because of my low thyroid hormones. But I am so scared of self-medicating as all the endocs were very very sure about I don't need a thyroid medication. After some of your's answers to my earlier post (it was about pituitary tests), I looked up the other test results I have from last 1 year. I saw that I have Growth Hormone test result, maybe this takes me somewhere;

--- test date 07.09.2017

IGF-1(CLIA) 181 (range 107-367)

Growth Hormone (CLIA) 5.49 (range 0-8.00)

T3 1.80 (range 0.80-2.00)




--- test from 10 days ago

FT3 3.60 (range 3.10-6.80)

FT4 13.90 (range 12.00-22.00)

T3 0.75 (range 0.80-2.00)

T4 6.02 (range 5.10-14.10

TSH 1.30 (range 0.30-4.00)

Doctors said these results are okay, my thyroid is doing fine (they just told me to keep testing in every once in a while). But I have low thyroid function symptoms, and what I know is these hormones are optimal when they are above their midranges.

I read that if RT3 is higher than 15 (in another source it says 12) it is not a good sign. My result from around 2-3 months ago is


RT3 18 (range 10-24)

By the way I have hypoglycemia due to insulin resistance -even though I exercise very well regularly- and I am on metformin for last 2 months. I haven't seen its good or bad affect yet. I was hoping that to be my miracle symptom healer but obviously it is not. I believe this is because my only problem is not the insulin resistance. The latest endoc said my insulin resistance is due to the PCOS-but as I said, what he claims is unbelievable.

Please help me! I am very desperate and tired of searching this, reading articles and visiting doctors. What should I do now?

[shaws]

PCOS can also be connected to hypothyroidism and taking thyroid hormone replacement can resolve it. I don't have a link but I will detail below the copy I have. We do definitely know that menstrual cycles can be affected as well as monthly loss can be severe due to undiagnosed/undermedicated hypothyroidism. Many can have ops which may have been unnecessary. The following are clinical symptoms and you'll probably have more than a few. I think you will enjoy sending the following excerpt to that particular endocrinologist:-

thyroiduk.org.uk/tuk/about_...

Excerpt:

Copy re Polycystick Ovary Syndrome:

Multiple Ovarian Cysts as a Major Symptom of Hypothyroidism

The case I describe below is of importance to women with polycystic ovaries. If they have evidence, such as a high TSH, that conventional clinicians accept as evidence of hypothyroidism, they may fair well. But the TSH is not a valid gauge of a woman's tissue thyroid status. Because of this, she may fair best by adopting self-directed care. At any rate, for women with ovarian cysts, this case is one of extreme importance.

In 2008, doctors at the gynaecology department in Gunma, Japan reported the case of a 21-year-old women with primary hypothyroidism. Her doctor referred her to they onecology department because she had abdominal pain and her abdomen was distended up to the level of her navel.

At the gynaecology clinic she underwent an abdominal ultrasound and CT scan. These imaging procedures showed multiple cysts on both her right and her left ovary.

The woman's cholesterol level and liver function were increased. She also had a high level of the muscle enzyme (creatine phosphokinase) that's often high in hypothyroidism.

Blood testing also showed that the woman had primary hypothyroidism from autoimmune thyroiditis.

It is noteworthy that the young woman's ovarian cysts completely disappeared soon after she began thyroid hormone therapy. Other researchers have reported girls with

primary hypothyroidism whose main health problems were ovarian cysts or precocious puberty. But this appears to be the first case in which a young adult female had ovarian cysts that resulted from autoimmune-induced hypothyroidism.

The researchers cautioned clinicians: "To avoid inadvertent surgery to remove an ovarian tumor, it is essential that a patient with multiple ovarian cysts and hypothyroidism be properly managed, as the simple replacement of a thyroid hormone could resolve the ovarian cysts."[1]

Reference:

1. Kubota, K., Itho, M., Kishi, H., et al.: Primary hypothyroidism presenting as

multiple ovarian cysts in an adult woman: a case report. Gynecol. Endocrinol.,

24(10):586-589, 2008.

+++++++++++++++

Both your FT4 and FT3 are too low and the following is a chart from TUK which you will find interestig. It might be worth sending Endo a copy of both as he needs educating as the majority of doctors and endos seem to be behind the times with the result that many women remain undiagnosed or treated for something they do not have..

thyroiduk.org.uk/tuk/testin...

[Cofy in reply to shaws]

I can't thank you enough for all these informations.

I have a list of endocrinologists to send these! Unfortunatelly I cannot trust them anymore even if I can convince them that I have a thyroid problem. I may have a pituarity problem too considering my TSH is not high where my T3 and T4 are this low. So probably I need a more detailed research, maybe additional tests. But I don't trust in the knowledge of the doctors here in my country anymore. 2 of the Endos I've visited are famous with their thyroid experiences, they have books and one of them even show up on TV programs about health dor thyroid disorders! This is funny actually. Is it possible for you to recommend me a doctor, literally anywhere in the world. I can try to travel because I am so desperate and health means everything.

[shaws in reply to Cofy]

Without good health life can become desperate. The people you have seen so far aren't knowledgeable in all possibilities and unfortunately Dr Lowe who suggested this and provided the link above died through an accident.

He was also an Adviser to Thyroiduk.org.uk.

An example of new syndromes which didn't exist before blood tests were introduced for diagnosing. He stated that CFS, Fibro and CFS were really due to thyroid hormone deficiencies but because the blood tests didn't relate these three new diseases were named after blood tests were introduced plus new medications.

In contrast, Dr Holtorf advocates a controversial six step plan that involves the treatment of hormone imbalances, mitochondrial dysfunction, sleep disturbances, and chronic infections.[25]

en.wikipedia.org/wiki/Kent_...

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

This is a French doctor below who also treats hormonal problems.

dailymail.co.uk/health/arti...

Your results and agree with other members that you have a problem with your thyroid gland as your results show:-

FT3 3.60 (range 3.10-6.80)

FT4 13.90 (range 12.00-22.00)

Both are at the bottom of the range when they should be at the top. Without T3 which is the only active hormone required in our billions of T3 receptor cells will make you feel awful. Read the following.

thyroiduk.org.uk/tuk/testin...

[Cofy in reply to shaws]

I went to my Endo who found that I have my İnsulin Resistance/Hypoglycemia. And I showed him my recent test results, told him about what you have written, the articles you have sent, and what I reas online. He went crazy, increased the volume of his voice and got so so angry. It was funny actually. He said every medicine is a poison and he didn't want to give me poison where thinks I don't need. He insists my results are ok, low-normal is still okay (!)... He explained that normal TSH means my other hormones are functioning enough and well, bu drawing. He said I am obsessed with this thyroid issue. And he think late and missed periods may happen to every women. He didn't question that insulin resistance medication is not helping me. He told me to send him the articles I have found. I will collect everything I have properly and send him. But I will also reach to Dr. Lowe for his advice as per your recommendation. Thank you for everything Shaws. Feels great to have a support here. These doc's would make me question my mental health if I didn't have your and other members' advices and thoughts.

[shaws in reply to Cofy]

Thyroid hormones are NOT medicine nor poison. They are replacement hormones which run our whole metabolism from head to toe and if deficient, we get clinical symptoms. You will tick off more than two I believe. His behaviour shows that he has only read or listened to what Endos are told, whereas we have practical experience about how low thyroid hormones affect our whole body - not just one part.

Unfortunately for us Dr Lowe died through a fall about 3 years ago but fortunately his website, although archived, still has good info.

[Cofy in reply to shaws]

I realized Dr Lowe died when I tried reaching him. I looked up to more info from his website; and I also researched more about my lab results, read more articles.

I believe that my lab results and symptoms are linked to Sick Euthyroid Syndrome - I guess it's also called as Low T3 Syndrome. I had anorexia when I was very young, between my ages 12-15. Than I had binge eating, a depression. Everything became better later on, I have healthier eating habbits comparing to other women around my age since I was 18; but I know calorie restriction history may cause low T3 as body tries to save energy; and leads body yo Sick Euthyroid. I also have Chronic Cystitis, I use medication to keep myself away from it every once in a while as doctors couldn't find the reason why I get bacteria (faught with it for 5 years, 10 different docs, no explanation or solution - I have a bas medical fortune). It is like, bacterias come from nowhere, it just happens. What I am trying to say, that also puts a lot of pressure and causes a big stress. And this is a possible reason of Low T3, too.

What confuses me, I read many sources say that Sick Euthyroid does not treated via thyroid replacement of with Armour, etc. They say, the underlying health problem should be healed.

emedicine.medscape.com/arti...

I got over my eating disorders a looong ago. My cystitis is uncurable, and under control for last 2 years, so does not cause any pressure since for a long time. I don't know what type of approach to my thyroid levels would be right.

[shaws in reply to Cofy]

It is very difficult for you as things seem to overlap. I think many doctors now treat a 'symptom' and not the whole person i.e. to try to get to the root of the problem.

I am not medically qualified but If a young Japanese woman with multiple PCOS is cured by thyroid hormones (she wasn't diagnosed as hypo as far as I know) but going by clinical symptoms. This is an excerpt:

Multiple Ovarian Cysts as

a Major Symptom of Hypothyroidism

The case I describe below is of importance to women with polycystic ovaries. If

they have evidence, such as a high TSH, that conventional clinicians accept as evidence of hypothyroidism, they may fair well. But the TSH is not a valid gauge of a woman's tissue thyroid status. Because of this, she may fair best by adopting self-directedcare. At any rate, for women with ovarian cysts, this case is one of extreme importance.

In 2008, doctors at the gynecology department in Gunma, Japan reported the case of a 21-year-old women with primary hypothyroidism. Her doctor referred her to the gynecology department because she had abdominal pain and her abdomen was distended up to the level of her navel.

At the gynecology clinic she underwent an abdominal ultrasound and CT scan. These

imaging procedures showed multiple cysts on both her right and her left ovary.

The woman's cholesterol level and liver function were increased. She also had a

high level of the muscle enzyme (creatine phosphokinase) that's often high in hypothyroidism.

Blood testing also showed that the woman had primary hypothyroidism from autoimmune It is noteworthy that the young woman's ovarian cysts completely disappeared soon after she began thyroid hormone therapy. Other researchers have reported girls with primary hypothyroidism whose main health problems were ovarian cysts or precocious puberty. But this appears to be the first case in which a young adult female had ovarian cysts that resulted from autoimmune-induced hypothyroidism.

The researchers cautioned clinicians: "To avoid inadvertent surgery to remove an

ovarian tumor, it is essential that a patient with multiple ovarian cysts and hypothyroidism be properly managed, as the simple replacement of a thyroid hormone could resolve the ovarian cysts."[1]

Reference:

1. Kubota, K., Itho, M., Kishi, H., et al.: Primary hypothyroidism presenting as

multiple ovarian cysts in an adult woman: a case report. Gynecol. Endocrinol.,

24(10):586-589, 2008.

[fibrolinda]

You're supposed to meet two out of three diagnostic criteria before being diagnosed with PCOS, do you? Here's link to NHS guidance nhs.uk/conditions/polycysti... I would refuse diagnosis unless you do and demand a scan

[Cofy in reply to fibrolinda]

I only have irregular periods out of these 3 criteria - and this is something new. I visit gynecologist regularly and scans always show healthy ovaries. The last scan was just 12 days ago, when my period 22 days late. Everything was fine. I am sure now that PCOS is definatelly not my problem.

[SlowDragon Administrator]

Have you had thyroid antibodies tested yet as advised in previous posts

Tried strictly gluten free diet

Gluten is linked to Hashimoto's and PCOS

Plus essential to get vitamins at good levels

Post results and ranges and members can advise