Very Unwell

Hi evrybody, its been a while since i was last on this site. I have Hypothyroidism, and am taking NDT 100mg daily. After 4 years of ill health and trying many thyroid meds I am still not going any place health wise. My last thyroid function tests of late have all come back at what has been classed as normal levels so the Dr sent me on to see a Specialist for another diognosis as I was still chronically tired and unwell. Granted its acknowleged that i do in fact have an Underactive thyroid which is being managed with NDT. I have now been told that I am in fact suffering from, "Chronic Fatigue Syndrome " and also Fibromyalgia. I have been told that there is no cure for this and will have it until I die. I have no quality of life and was wondering if anybody else here knows anything about this terrible disease. I do understand that it affects the Adrenal glands and that i am infact burnt out. Sorry about the spelling but its effecting my Cognitive function at times. Thankyou all so much xx

13 Replies

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  • Hi, sorry you are feeling so unwell. Do have your latest blood test results so we can maybe try and work out what's going on? Have you had tests for things like Vit B12, Vit D and Ferritin? Any thyroid medication will only work to it's best capacity if everything else is optimal too so I would guess that there is some deficiency somewhere. x

  • Fibromyalgia and CFS are not diseases, they are syndroms. Syndroms are bunches of symptoms. Symptoms are caused by something - my guess is that your hypo is not as well managed as your doctor likes to think! That's usually the case, because doctors know nothing about thyroid - which is why they invented two new conditions called Fibromyalgia and CFS - with no blood test to prove you have it, no treatment and no cure - to explain the remaining symptoms of under-treated hypo patients.

    Do you have a copy of your latest labs? If so, post them on here, with the ranges, and let's have a look.

  • Hi Greygoose, thankyou for answering my email so quickly i really do appreciate that. T4: 11.6 Normal ref range ( 10.0 -19.0 TSH; 0.03 Normal ref range ( 0.50 -4.00 T3: 5.7 Normal ref range ( 3.5 -6.5 ) . Thankyou

  • Well, they're in range, but that doesn't mean they're right for you. Your FT3 - the important number - could be higher. It's only just over-mid range. Some people need it over the top of the range to feel well. We're all different, and can't all be expected to fit into what doctors consider a 'normal' range. An increase in dose might help enormously. Have you had your antibodies tested?

  • Hi greygoose, thankyou for that advice as I was thinking of increasing it just to see if it made any difference, so will do this and see how i go. Again, thank you xx

  • You're welcome. :)

  • T3 is the active thyroid hormone which controls the metabolism and therefore the symptoms. Your Free T3 is in the top part of the normal range so you should not have hypothyroid symptoms.

    As you are still having what appear to be hypothyroid symptoms, one possible cause is a genetic condition commonly known as Thyroid Hormone Resistance. It causes hypothyroid symptoms and requires very high T3 levels in the body to overcome the resistance.

    It is a common cause of CFS and Fibromyalgia.

  • I see from previous posts that you are in Australia

    Have you had levels of B12, folate, ferritin and vitamin D checked? These normally need to be right at top of the range for our thyroid hormones to be able to work (common for them to be rock bottom)

    Did you have thyroid removed due to Grave's? If so perhaps going gluten free might help?

    Best advice is to read as much as you can.

    Vitamin and minerals levels are very important, but standard medical thinking, doesn't at the moment seem to recognise this.

    You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, leaky gut and gluten connection to autoimmune Hashimoto's & Grave's too.

    drgominak.com/vitamin-d-hor...

    vitamindcouncil.org/tag/aut...

    chriskresser.com/the-gluten...

  • Hi Slow Dragon, my Dr has told me that these are all at normal levels. I am not taking a B12 supplement though, only a B complex. Will try the B12 and check out the sites you have listed.

    Thank you so much also for your help X

  • " normal" is not a result, it is an opinion.

    Ask for the actual figures, including ranges (figures in brackets after each result)

    Many of us have been told the results are "normal" but find improvement getting vitamin levels higher.

    Gluten free may give significant improvement too.

  • Hi Slow Dragon, I am eating Gluten free as I am Cealiac, also Lactose intolerant to name a few. Will try and get the results. Thankyou x

  • Then if coeliac & lactose intolerant pretty likely to be low in nutrients......magnesium perhaps too

  • Hello, there. I'm sorry you are feeling so bad, and failing to get any helpful advice from your doctor. Unfortunately, I suspect, many , if not most, doctors' understanding of what actually occurs when one is Hypothyroid is very, very limited, and as they tend to base everything they do on flawed blood testing protocols, which assume everyone is exactly the same, so their optimum blood results should also be the same, the problem is made even worse for those of us who are their patients. With regard to your symptoms, however, having had similar experiences myself, I wonder whether you might be suffering from a nutritional deficiency? If you are both Gluten & Lactose intolerant, then I imagine your diet is severely limited, and this must be having a serious effect on your energy levels and overall health. I was anorexic for several years, and after my "recovery" (not initiated or supported by the medics) , I maintained the habit of long periods of fasting between meals, which, has, I believe, contributed to my current health issues in a major way. I have only recently begun to follow a more regular eating regime and balanced diet, which is already helping a great deal with the symptoms attributed to "Fibromyalgia". I would recommend talking with a dietician, after keeping a food and symptoms diary for a few weeks, in order to establish what improvements, if any, need to be made to your current food intake. And, of course, as others have said, blood tests to establish if you are deficient in B12 and Magnesium, among other things (Folic acid for instance) would also be helpful, as these deficiencies are so common among those whose Thyroid Gland is damaged/diseased. I hope this advice is of some use, and I look forward to hearing how you get on.

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