Hypo symptoms, diagnosed as fibro?

Hi, I've never posted before but am at my wits end and you all seem very knowledgable especially compared with my GPs who are unhelpful as well as arrogant and dismissive. I'd really appreciate your help.

I was diagnosed as having fibro 3 years ago following about 7 years of complaining of feeling exhausted, freezing cold, weight gain, sore eyes, hair falling out, etc etc. I have arthritis and finally got referred to rheumatology who diagnosed the fibro as by the time I got to see them most of the arthritis swelling had gone.

I was also told by rheumy that my Vit D was low, my GP at the time said it was 'slightly low' (it was 42) and to buy 1000mg vit d tablets which I started taking but noticed no improvements.

I have worsening symptoms now along with painful joints so have started pestering the docs, they have run the usual cheap blood tests and told me I'm 'normal'. My vitD is still only 81 (80 -150) but that's 'normal' too according to them.

I paid for private bloods as GP wouldn't do any. Results:

Active B12 *>256.0 pmol/L 25.1 - 165.0

Folate (serum) 13.8 ug/L 4.6 - 18.7

FERRITIN 46 ug/L 13 - 150

TOTAL THYROXINE(T4) 92 nmol/L 59 - 154 THYROID STIMULATING HORMONE 3.08 mIU/L 0.27 - 4.2

FREE THYROXINE 16.4 pmol/l 12.0 - 22.0

FREE T3 5.3 pmol/L 3.1 - 6.8

Thyroglobulin Antibody 15.4 IU/mL 0-115(Negative)

Method used for Anti-Tg: Roche Modular Thyroid Peroxidase Antibodies 7.4 IU/mL 0 -34

As GP refuses to help me in any way, what do I do now? I am thinking of buying some thyroxine online?

Thanks in advance.

9 Replies

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  • Your ferritin is too low, but everything else looks OK - TSH is high considering the free T3 level - don't know what that means. 1000 iu vit D wouldn't do a lot to raise levels - with UK ranges you need to be aiming for mid 90s and up (but not over the top of the range).

    is your testosterone or blood glucose high?

    How is your adrenal function (cortisol) and gut health?

  • Welcome to our forum

    Unfortunately, for us, doctors are not well trained in the diagnosis of thyroid gland problems except to take note of the TSH level.They have no knowledge whatsoever of clinical symptoms. If our TSH doesn't rise to the appropriate point we will be diagnosed with anything other than hypothyroidism. In the USA with a TSH of 3 you would most probably medicated but in the UK it has to reach 10 but some GPs will medicate if it reaches 5. Fibromyalgia was only named about 10 years after the blood tests and levothyroxine were introduced as well as ME and CFS.

    We have to read and learn as much as possible in order to get well and I will give you a link for information. The first is by Dr Lowe who was an Adviser to Thyroiduk.org before his death two years ago. His website is now archived but some links within may not work but most of it does.

    thyroiduk.org.uk/tuk/relate...

    thyroiduk.org.uk/tuk/relate...

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

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

    Members who have any information re medication will send you a Private Message. A private message is sent by clicking on the person's name or photo and it takes you to a new page and click on message and it remains private between you and them or anyone you wish to add to it.

  • Thank you for the welcome and all the links! I have been researching do not believe the ME and fibro diagnosises docs are so keen to throw out. How comvenient, an illness with no treatment or cause which covers just about every hypothyroid symptom!

    My blood glucose was 5.4 fasting which concerned me as my Mum is type 2 diabetic.

    I'm now taking 5000iu Vitamin D capsules daily with a 3000iu spray in the hope of getting that up.

    Ferritin is tricky as I can't take anything with iron in as it gives me a terrible upset stomach, I've been taking floradix for the last 6 weeks or so and my hair loss has slowed down which is good, GP won't test that though as my blood count was 'normal'. I can't afford to keep buying the floradix.

    I've not had any hormone tests as I'm taking the pill due to suspected PCOS and strange you should mention gut health as I've been in tears the last 2 days as despite having cut out sugar, refunied carbs and processesed foods my stomach has bloated by 6 inches! I look pregnant.

    My Esr was at top of range in my NHS blood test and lymphocyctes were just above range but doctors said that doesn't matter.

    I have a cortisol blood test which I've not yet booked in for, to be honest the more I see the doctor the more frustrated and ill I feel!.

  • This is even stranger. I bet if you look on Thyroiduk.org and click on the hypo link you will see a symptoms list. You will probably find you have a few and this is another one. I don't have the link but have copied and pasted. You will find we have to educate ourselves in order to get better, by hook or by crook, as doctors don't appear to know much at all about clinical symptoms:-

    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]

  • Tsh is too high

    free t4 could be nearer 19

    free t3 currently ok

    ferritin must be over 70

    looks to me like your thyroid is failing but your symptoms seem to be more than i wouldcexpect

    if you going to self treat use NDT but also take iron plus vit c at least 4 hours apart from any thyroid meds

    hoewever i would immediately be checking that i do not use any aluminium or non stick coated cookware

    use only stainless steel, enamel,cast iron,or glass

  • Thanks for the advice. I do use nonstick pans, never given it a 2nd thought! What problems do they cause?

  • I never knew there was a link between thyroid and ovarians cysts, thank you for that info.

    My latest GP (I'm shopping round at the surgery to try and find a helpful one but not successful so far) told me to stop taking the pill so they could run bloods on my hormone levels, I think I do need to do that. I had assumed she was just going to tell me they were normal too but now you have a point.

    I do suffer with cysts so maybe that explains the bloating?

    Thank you for all your responses.x

  • I was diagnosed with fibromyalgia three years before Hashimotos. During that time my thyroid results were in range, but I had ALL the symptoms of hypo. When my results finally went out of range, antibody tests (not done before) showed Hashis. Went through levothyrox, then added T3 meds, but only when I managed to get on sufficient NDT did my fibro go away completely! I now take 4.5 grains of NP Thyroid. All together, took seven years. Start insisting now!

  • You may well suffer from Candida albicans, which is not uncommon for hypothyroid sufferers (as is Vitamin B12 - see e.g. the Pernicious Anaemia Society's website & Martyn Hooper's book - and D3 deficiency). Getting bloated and looking 6 months pregnant sounds like a sign of the 'die-off'/Herxheimer effect, i.e. your no sugar/no carb approach is starting to work.

    However, as I know from experience (and doctors such as Sarah Myhill confirm this) Candida cannot be eradicated by diet alone - You need to do the following:

    a) an antifungul to kill/weaken the Candida (see Dr. Myhill's website on Lufenuron and everything on Candida & Dysbiosis)

    b) a no-sugar diet (any sugar including lactose) to starve the yeast/fungus & also a yeast-free diet (essentially anything that's fermented including beer, wine, vinegar. Most ready-made foods have both - even stock cubes contain yeast)

    c) probiotics to build up you gut flora (which is central to your immune system) - start making Kefir with fresh Kefir grains.

    You may find my previous posts on gut health with links to very informative websites useful (just click on my name and they come up).

    A better approach for your problems would be to see an ecological/functional doctor such as Dr. Myhill or Dr. Peatfield who know about thyroid diagnosis & treatment such as Armour, and treat everything that's connected with that condition (incl. Candida, adrenal fatigue, Vitamin B12 & Vitamin D deficiency etc) or start self-treating - see their (and other) books and websites, details of which I have given in my previous posts. If you suffer from adrenal fatigue/insufficiency (see Dr. Wilson's book), you may benefit from adrenal support such as e.g. Nutri Advanced Adrenal Extra).

    I hope this helps.

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