Just diagnosed with pcos

I knows its not thyroid but I was hoping to get some advice. I have been suffering for the last 8 years almost on a daily basis with lots of symptoms. Distended painfull stomach,tinnitus,lightheaded,feeling sick (and sometimes sick) every morning,zero energy,can't concentrate, foggy head, sudden need for something sugary or fatty, sometimes can't eat for days I'm that swollen, Hair loss and thinning hair,pins and needles in hands and feet, shaking hands and feet, night sweats,anxiety,always tired! I'm 4,9 and 7 stone but look 9 months pregnant!

I have had scans blood tests and all clear untill I requested a test for the menopause as I hadn't had a period in over a year I'm 34 by the way. I have 2 children but sure this has to be something I had to ask, my results were low frolic acid slightly abnormal liver function test and polycystic ovary syndrome. I was in a strange way almost relieved that in all these years of going to the doctor ( and I'm sure he thinks I'm a hypochondriact) that I finally had an answer. Untill I said ok so what now and was shot down with well there is no treatment unless you want another child! Which I don't, I could have cried! He said all the other symptoms are unlikely to be related. I feel unwell all the time Can anyone shed any light on this before I book my place in the nuthouse! Thank you very much from a very miserable me :( x

21 Replies

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  • Have thyroid issues definitely been ruled out? If thyroid function tests were done, do you happen to know the results? It wouldn't be the first time someone's been misdiagnosed. Plus PCOS and Hashimoto's syndrome often go together. See: stopthethyroidmadness.com/p...

    If it definitely is 'just' PCOS, a place to start might be to try a lower carb diet. Google "PCOS and insulin resistance" for more info.

    So sorry you're feeling so awful. Stupid GP - you're just supposed to live like this?? Who'd be a woman, eh? ;)

  • A few years ago I met a woman who was suffering like you and I had a google linking thyroid with PCOS and a great deal came up. I think you are on the right track - follow your instincts and ask for the following tests :- TSH - FT4 - FT3 - Iron - Folate - Ferritin - B12 - VitD... - oh and the anti-bodies Anti-TPO and Anti-Tg.

    Docs are often ill informed around thyroid issues - or simply do not know - so please do not accept anything from your GP when they say Normal. Ensure you have copies of all your results and ranges.

    Many people will do their best to help.....

  • I've had some results of low creatinine and sodium elevated ferritin at 230 thyroid and blood sugars within normal range normal b12 ttg negative, normal full blood count urea and electrolytes no significant abnormalities

    I'm at a loss as to what this all means

  • Have you got copies of the results? If so post them all up with ranges. You would be surprised what other people can see in a full set of results - many things that are "in range" can still be suboptimal.

    You say you have low folate in your original post, this normally comes alongside low B12. You say he offered no treatment - did he not give you folic acid to correct your deficiency?

    H x

  • Thank you no I haven't got the copies I've asked for them though got to have a second round of bloods done too would high ferritin levels affect me? I have to pick up a prescription for folic acid will this make a difference to the way I'm feeling? Thank you for your help I appreciate it x

  • High ferritin could be a sign of inflammation in the body, rather than a sign of high iron levels. The only way to know is to have an iron panel done - serum iron, transferrin, % transferrin saturation etc. More info on iron tests here:

    labtestsonline.org.uk/under...

    You also get clues from the FBC (full blood count) which is why getting the full set of results is so important.

    Folate deficiency can make you feel very ill, it basically has many of the same symptoms as B12 deficiency. But people are usually deficient in both, they work together, so it is not usually a good idea to give folic acid without B12. Doctors have a warning to check B12 is OK before giving folic acid, but the problem is the B12 test is unreliable. That's why you must get copies of the results and post them. And have a look at this helpful link:

    b12deficiency.info/

    You say you are having some more bloods done, do you know when or what for? You need to know what they are testing and why, because if you start taking the folic acid beforehand it could affect some of the results.

    H x

  • Thanks for this I'm not sure he just said he was retesting ferritin and folate and some other stuff I've also seen an endocrinologist who is sending me for more hormone tests and amylase? I'll post all the results when I get them it's so blooming complicated :( thank you x

  • It's only complicated because doctors make it so, that's why you must ALWAYS get full copies of all your results and, I'm afraid, learn how to interpret them. x

  • Thank you you just trust they know what they are talking about don't you! But I will from now on definitely! I haven't got the appointment for my next bloods yet and waiting for the results of the others so I'll post when I get them thanks again it's mind boggling stuff

  • I would follow hampster1's advice above.....

  • A very good blog about PCOS on Hypothyroid Moms website by Dr. Fiona McCulloch ND in Canada. PR

    hypothyroidmom.com/pcos-and...

  • Hello, Sorry you are so miserable.xx

    A long shot, but it is happening to me - haemochromatosis - look on the haemochromatosis society website (www.etc) you mentioned your liver - do you have your test results - I would need some figures xx

  • Iv had thyroid and diabetes tests years ago all fine I can't go on diets as sometimes I can't eat for days or feel like eating at certain times I never overeat as I always feel full with a swollen tummy my liver the doc says I'm over doing it on drinking but I don't drink that much maybe sometimes to give myself a break from feeling so I'll but I work full time ( or try and scrape myself through the day) so don't go for it like many people do so I just don't know anymore I'm fed up thanks for your replies I do appreciate it xx

  • I was wandering wether to see an endocrinologist and if so what to ask for? There must be an answer surely x

  • I do not have the link to this info below, but you could give your GP a copy:

    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 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 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.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

  • There is definitely a link between pcos hypothyroidism and insulin resistance (the latter can lead to type 2diabetes).

    If your thyroid hasn't been checked it is certainly worth doing as well as fasting gluc for diabetes. You could also ask to go on the pill which is probably the only treatment they'll offer you like you said unless you want children when they would be able to give you the option of metformin(diabetes drug) if you would need to lose weight but if you weight 7st that is unlikely and/or ovarian drilling where they drill through all the little cysts to remove them but i dont think this is a permanent treatment there is always the chance they will come back.

    unfortunately your gp is right that there are not many treatments available, i believe low carb is meant to help as a diet for people with pcos

  • Thanks shaws that's very helpfull I'm going to speak and book an appointment with an endocrinologist today there has to be an answer to this no one should suffer like this I'm at my wits end how can hormones make you so Ill it's mind boggling thank you x

  • Hi Masiseymoo, I have both too. I was diagnosed with PCOS around the same time as Hashimoto's, after coming off the pill last year which I'd been on for a long time. I was hopeful that once I got my thyroid stable, it would sort the PCOS out. So far that hasn't happened, but I'm still trying to sort my thyroid out! I'm seeing a naturopath at the moment who has experienced of both conditions, she is very good. Let me know if it would help to know some of the things I'm doing, before I write loads of waffle! Emma x

  • Thank you yes anything can't make me feel any worse! I've just booked an appointment for next week with an endocrinologist who are trangely very eager to see me as I was a trail for growth hormone as a child not sure wether to be worried or pleased ;/

  • Inositol very good for pcos please read about it!

  • Please try inositol sounds like insulin resistance from your polysiistic ovaries I am taking it. Google inositol for pcos

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