insulin/ pcos/leptin resistance: Hello, I am new... - Thyroid UK

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insulin/ pcos/leptin resistance

lavington profile image
21 Replies

Hello,

I am new on this website and will be grateful or any advice. My 18 year old daughter has pcos-polycystic ovary syndrome. She is seen by the endocrinologist every 6 months for blood tests. I have been requesting the consultant if it's possible for them to carry out insulin resistance tests since the past 3 years but no one gave me any positive reply to by request. Last month I decided to take things in my hand and booked with a private nutritionist who advised me to get my daughter tested for metabolic issues. The test was costly and done by a diagnostic laboratory. The results showed that she has insulin resistance and also leptin resistance. Her cholesterol levels are also high. I am getting worried as her belly is huge and that was one of the main reasons why I asked to get her tested for this as there is a strong link with pcos and insulin resistance. The nutritionist hasn't really given me a diet plan but just says that I need to eliminate sugar from her diet at all costs. I am at the end of my tether as I do not know what to do in order to address both these conditions. Are there any dietitians who can devise an appropriate diet plan so that I can get my daughter to lose the excess weight not only on the overall body but also her belly. I also make sure that she is active. She cannot do much as she has a learning disability and this makes things even more difficult. All I want is good health for her and to prevent diabetes. I am also getting her tested for a full thyroid function test which is being done privately. Thank you in advance .

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lavington
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21 Replies
Heloise profile image
Heloise

I applaud you for going forward because after twenty years I see the limitations of the medical system when it comes to these chronic, immune and hormonal conditions. There is a lot of help here when you get your test results. I think that teen girls have more testosterone than boys and it seems to be implicated in PCOS. David Clark has short videos that point out some of the facts. This is #18 but you can go to you tube and find #19. You'll see how many features are involved when hormones go awry. As for diets, a ketogenic or an autoimmune diet are easy to look up online.

youtube.com/watch?v=HPm-zg7...

lavington profile image
lavington in reply to Heloise

I will definitely watch videos by David Clark! I never heard of him, thank you for forwarding the video. I am looking into a modified ketogenic diet , thank you for your suggestions. It's so hard explaining to someone with a learning disability that she cannot have a treat every now and then. There are all sorts of chocolates and goodies beckoning to us at every nook and corner!

Heloise profile image
Heloise in reply to lavington

I would take baby steps, lavington. Get the really dark chocolate. These cravings are terrible and not her fault really. Try to find fats that she likes. Coconut and avocados are great. Does she eat salads? Buy some unfiltered apple cider vinegar and whenever possible use it. If she would actually take a teaspoon or two before meals it will help with insulin resistance. It blocks starch to some extent. She's probably lacking nutrients so use some enzymes to help with metabolization. Maybe a fruit smoothie and adding in some greens would make up for desserts. I hope you can conquer this.

lavington profile image
lavington in reply to Heloise

Thank you Heloise, I will keep you posed about the results! Apparently the lab has received the blood sample this morning and results will be out in 10 days or so. I just hope it's not Hypothyroidism. My heart just sinks. The Total Thyroid Screen test appears to be comprehensive, I am keeping my fingers crossed.

Heloise profile image
Heloise in reply to lavington

Very good, the ones mentioned by Slow Dragon are appropriate. I think you might be happier to find out it's a thyroid problem than the assortment of other issues she has because taking a hormone pill is far better than some of the pharmaceuticals being used these days. Progesterone is another possible support for her adrenals. There is a vast amount of research being done for autoimmune conditions so there is reason for hope. This is another man who has a real grasp of how the thyroid and adrenals work together if you have time. This man thinks you can health both.

youtube.com/watch?v=SDphVgA...

lavington profile image
lavington in reply to Heloise

Yeah Helouise, I just replied to Deeb about a book called Thyroid healing by Anthony Williams. It's got certain protocols that strengthen the thyroid gland. He is American though. I just basically research pcos and related conditions to anything about it health is in our hands.

lavington profile image
lavington in reply to Heloise

I will watch this, Have heard about this chap!

Heloise profile image
Heloise in reply to lavington

Take notes. He moves pretty fast. He has one on women's health...they are all terrific because he understands everything. You are a champ!

SlowDragon profile image
SlowDragonAdministrator

PCOS is often linked to Hashimoto's so definitely getting Thyroid tested is good plan

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. £99. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.

pcosdiva.com/2015/08/got-pc...

thepcosnutritionist.com/res...

lavington profile image
lavington in reply to SlowDragon

Just took a look at the pcos diva-fabulous-thanks Slowdragon. You are so right, none of the doctors, and that includes endocrinologists, bother carrying out the FT3 test. This morning I took my daughter to the hospital with my Genova Diagnostic kit for thyroid function and got it done privately. I paid 25 pounds for that and 150 for the test! Now I will wait for the nutritionist to get back to me with the results. I am not going to give up on my daughter. I am just a little concerned-I got the blood works done at 12.45pm! However my daughter was fasting. I just hope that this will not give a wrong reading. I am so worried now.

deeb696 profile image
deeb696

Hello Lavington,

Please excuse my long-winded personal history but it might be relevant!

I am also new to this website and wished that it existed years ago when I was diagnosed with PCOS and it was relatively unknown (or maybe not talked about a lot) and no help was forthcoming. I've always had it but it didn't have a name until I got diagnosed with it at age 37. I was told I'd likely need IVF to have a baby, wasn't my top priority and I know thats not your concern, but that made me look into alternatives. At the time (1999) research was revealing a strong correlation between insulin resistance and PCOS. I had been on the contraceptive pill by that time for 9 years, for convenience but also to manage no/irregular periods and it really did help with the hirsutism, acne, headaches and mood swings. I had always been a healthy eater and was overweight by about 15 pounds, a stone...but that was enough to make my symptoms worse. So, reduced carbs and exercise moderately (walked everywhere, eschewed a car and took the Tube). I only lost about 7 pounds but that was enough to enable me to get pregnant. Again, not your concern at the moment but it was a really amazing example of how weight management can have a surprising effect. You are so very good to keep her as active as possible, it's hard motivating teens. Your nutritionist should be able to make a diet plan for you, isn't that one of the roles of a nutritionist ? If she can't help there is a wealth of information online that will help you with specific diets relating to PCOS. No matter what else, diet will be the biggest factor in feeling and being better.

health.harvard.edu/diseases...

pcosdietsupport.com/the-bes...

I have a 16 year old daughter who, because of me, has a 50% chance of having polycystic ovaries and she likes her Nutella! Here is a link to a page relating directly to young women with PCOS and if you follow on to 'Managing symptoms' at the bottom of the article you will find good general advice.

endocrineweb.com/conditions...

It might also be really helpful for you and your daughter to speak with a therapist to deal with all the stress and emotion this kind of thing can cause. Life is hard as a young person these days and having the emotional skills to deal with this life-long challenge will help her understand her role in looking after herself.

I hope this helped a little; it's really tough but you are on top of it all and doing all the right things! Your daughter is lucky to have you in her corner.

D

lavington profile image
lavington in reply to deeb696

Thank you so much for such a comprehensive email. There is so little that doctors tell us about this condition. The test that We got done today is the from the Genova Diagnostics Lab . A test that will diagnose any issues related to the thyroid. The first test was from the Regenerus laboratories and was the Metabolomic test I am really worried at the moment as the last thing i want is issues with her thyroid, I already have so much on my plate :-(. I am also planning on booking with a therapist regarding my daughter's stress levels. I have other issues with her as well-she has a habit of rummaging the cupboards when i am upstairs busy with household work. She will eat up any chocolates or even plain sugar that she comes across. I have stopped buying all the nice stuff due to this. At one point she was a massive 89 kilos till I 'educated' myself about her condition and brought her weight down to 70 kilos. However, the weight has been creeping up since the past htree years and now I realise it is all due to the Insulin resistance. I m also trying to look into the Keto diet. We are our own doctors, it's so sad. Thanks again for your reply-much appreciated!

deeb696 profile image
deeb696

freelancedietitians.org/cli...

Dear Lavington, I just found this link ...it might provide some answers for you.

D

lavington profile image
lavington in reply to deeb696

Thank you so much!! I will take a look at the link, your help is much appreciated!

deeb696 profile image
deeb696

My heart goes out to you, Lavington; you are quite right about being our own doctors. I believe GP's have our best health uppermost in their minds but they can't know everything and it's up to us to take charge and get 2nd, 3rd opinions. As well as having pcos, I am also 7 weeks into hypothyroid meds, and feeling WORSE not better this the reason I signed up to healthunlocked...I am going to tough it out until my next blood tests, though, and re-evalute whether or not to seek another GP or endocrinologist.

My interest into Metformin (glucophage) as a possible treatment for myself (instead of/in addtion to levothyroxine) was piqued when I searched for information about your daughters condition. But if your daughter is diagnosed as having hypothyroidism this might be the answer you need; it is very possible it is the reason she has PCOS in the first place . I found this extremely interesting article on this subject and I wonder what came first; hypothyroidism or PCOS??

place.hypothyroidmom.com/pcos-and...

I hope you find some relief with the results of your daughters' tests!

Sincerely,

D

lavington profile image
lavington in reply to deeb696

Deeb, have you read Anthony Williams book-Thyroid Healing? He is also known as the Medical medium. Please do buy it as the reviews are good. I bought it a week ago and some of his tips appear to be really beneficial for all those with Thyroid problems. It's all about sharing information at the end of the day-good luck!

lavington profile image
lavington in reply to deeb696

My daughter is on Glucophage as well. One tablet twice a day.

deeb696 profile image
deeb696

Thank you, Lavington, I will get that book...I haven’t read any yet just tons of stuff on the net. I would be grateful for your opinion;

I didn’t feel bad at all before I went on thyroxine, sometimes tired but better as I’m nearing menopause. I’m diligent about when and how to take it (my doctor had to look that up when I went back to ask if this is really how one is supposed to feel). I can’t wear my contact lenses anymore, even with eye drops because one morning I woke up and they were bloodshot and dry, my new normal ☹️? Had a blood test last autumn, my TSH came back as 6.5, didn’t see doc for ages as he was away ( his mum was seriously ill, he was taking time off), next tests this spring came back as TSH 5.75. No other markers except for antibodies which were less than 0.90. So no Hashimoto’s ? I’m 56, active, got a BMI in the healthy range , slightly elevated cholesterol and BP, no family history and swelling/ nodules, doc checked. I had few complaints; didn’t feel cold, no constipation, no brain fog. Yes, all the usual stuff that goes with near- menopause but not debilitating. Now I feel crap; so tired I can lie down and nap at any time of day, diarrhoea, and the dry and red eyes, and a sensation of being outside my own body. So, I reckon he’s giving thyroxine as prophylactic treatment because it often evolves into chronic hypothyroidism. I really would like all the markers tested but I live in France and they do love dispensing their meds here! There’s no ‘wait and see’ attitude either....

Am I nuts? Impatient? I will tough it out til my next blood test early May but after 3 years of other medical issues ( ruptured Achilles, op on the meniscus of knee) I’m fed up with me!

Thoughts? Thank you for listening!

D

lavington profile image
lavington in reply to deeb696

I am just waiting for my daughter's tests! Quite nervous about them as well. I completely understand how you feel, hang in there. I would still suggest getting tested again-however get a proper diagnostic test that provides a thorough analysis or thyroid hormone metabolism which includes central thyroid gland regulation and activity, thyroid production and secretion, thyroid autoimmunity. Has your doctor carried out the reverse T3 test?

lavington profile image
lavington

Hi Deeb, I am no expert but because of my daughter's condition I do try to read as much as possible about pcos, thyroid function, insulin /leptin resistance, cholesterol function etc because they are all connected. Firstly-dry eyes are definitely due to hormone changes due to peri menopause , the menopause or simply because of hay fever or seasonal allergies. I suffer from dry eyes due to allergies. I tried very many eye drops before finding the one that suited me beautifully. It's called Lumecare gel and is available from Amazon. The other thing that I do for my dry eyes is take Buckthorn oil capsules. These are also available from Amazon. Buckthorn is known for relieving dry eyes and I found immense relief from taking these regularly so please do try them.

According to what my daughter's functional medicine doctor told me, you normally tend to feel cold, lethargic and very tired almost most of the time if you are hypothyroid. I also know that reference ranges from tests done by a 'normal' doctor are very different from the reference ranges of diagnostic tests such as the one from Genova. Your doctor probably tested your TSH, levels of T4, antibodies, free T4. However, it is VERY important to get tested for T3 as well which most doctors don't. The reference ranges are higher as well. I will give you an example about the Genova that I got done for my daughter on Monday. Their reference ranges are given below:

Reference range for Total Thyroxine-77-150

TSH--1.0----2.0

Free T4--12---20

Free T3--3.4--6.0

Free T4: Free T3 ratio--.0---5.0

Your TSH is quite high. Please do buy Anthony Williams (The medical medium) book. Read the testimonials on Amazon.com and also Amazon.co.uk. He has 3,404 reviews on Amazon.com and 421 on the UK one. Also go through the website of Dr Izabella Wentz, she is known as the thyroid pharmacist and suffers from thyroid issues herself.

Lastly-if your finances permit-book yourself with a functional medicine doctor who will carry out the right tests and will give you a proper diagnosis. Think about the reference ranges! Higher readings are considered acceptable but may cause a huge upheaval in the body. All the tests come out as 'normal' due to these' acceptable' levels. Other tests would give a totally different reading. Your health is in your own hands and as far as I am concerned, these conditions are reversible provided YOU are ready to take your health into your own hands ! Stop suffering alone and stop feeling sorry for yourself. Do something about it, be proactive! Apologies if i have offended anyone-I am just a mum to a daughter whom I love dearly.

deeb696 profile image
deeb696 in reply to lavington

Lavington, thank you for all that and certainly no offence taken!

If I am not happy with my gp’s decision after I have my next bloodtest or if he refuses ( only because it’s not generally done ) to do more extensive blood tests then I will ask to see a specialist.

Until then I’ll be diligent about how and when I take my meds. I do take Vitabiotics Women’s Multivitamins for over 50’s but reading on various threads I might need to speak to the endocrinologist about that as well.

Many thanks again fir your sound advice

D

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