how can I get a diagnosis?

Hi all, I haven't written on this community before but think I may have a thyroid issue. My problem is that my GP seems to be checking everything but FT levels despite my mentioned my concerns to her, she made some light-hearted joke about another patient trying to self-diagnose. How I am sick of health professionals who think they know more than their patients. Sometimes they do, some medics are superb, but I have always found they are the ones who are willing to take the lead from their patients.

My current symptoms are massive oedema in both legs and every day so that I am in discomfort all the time and pain some of the time, depression diagnosed, fibromyalgia diagnosed and masses of other joint problems, recent hair thinning, voice cracking so I can suddenly no longer sing in tune, brittle nails so they break easily, a general feeling of being unwell, sore feet, puffy hands, carpel tunnel symptoms that have been investigated and are not due to carpel tunnel, permanently puffy hands and weakening grip, dizziness and a general feeling of weakness at times, feeling 10 years older than I am - I am 63, - what else can I say. I feel dreadful. Does anyone have any ideas please? If it sounds like a thyroid problem then what kind of consultant would I see privately in order to get a diagnoses as quickly as possible so that I can get on with my life? I really will appreciate any advice and support. Suex

8 Replies

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  • Hi Sue, first of all, do you have any figures at all from the blood tests you have had? If you have any results - with ranges if possible, then put them on here and you will get some more useful advice. If you are borderline (by the guidelines the doctor is using, that is) than there are things you can do to possibly get a diagnosis. For example, having your thyroid function blood test as early in the morning as possible means you will be testing when the TSH is at its highest. That can make a big difference. If you want to see a private consultant, then you will find some information here:

    thyroiduk.org.uk/tuk/diagno...

    (you can either copy and paste into your browser or highlight, right-click and select 'go to...')

    Look forward to hearing from you again soo with results if possible,

    Marie XX

  • Hi, the problem is getting my GP to do a blood test - she did a simple FT test last year and because that was normal she is starting with every other possibility, meanwhile I am feeling worse and worse and now I have problems sitting because my legs swell so quickly and remain swollen then problems walking because of that! Help.

  • The normal range for the standard thyroid test (TSH) is very wide and is based on a mostly healthy population, not hypothyroid patients. There is also evidence that shows that TSH doesn't correlate with thyroid hormone levels in hypothyroid patients anyway.

    In other countries they treat for hypothyroidism when TSH goes above 3. In this country it has to be above 10! Some doctors will treat before that, if they know what they are doing. If your doctor is this arrogant, you may be better seeing someone else.

    Please ask your surgery for a copy of your last thyroid function test. Just ask for the number over the phone. If it is above 2, you probably are beginning to develop a thyroid problem.

    There are other possible reasons for your symptoms but I agree that thyroid is the most likely.

    Just as some more information if your GP is being particularly argumentative; TSH can appear normal due to being artificially lowered because of a vitamin B12 deficiency. It interrupts normal communication between the hypothalamus and your pituitary gland. Your hypothalamus is responsible for telling your pituitary to release more TSH (thyroid stimulating hormone) when your body doesn't have enough. If that command isn't getting through, your pituitary doesn't know to increase production and you end up with a seemingly normal TSH (thyroid function test).

    I hope that helps a little. If you get hold of your result, post it on a question and we will be able to let you know if it is good enough :)

  • Hi Carolyn, as hard as I've tried I cant find any info on the net about;

    "TSH can appear normal due to being artificially lowered because of a vitamin B12 deficiency.".

    I would like some scientific info to show my doc. Could you point me to some please ?

  • Sorry Marie, many thanks for the link for diagnosis - I will follow that up. Suex

  • No need for sorry, you are going through hell and it is frustrating. I suspect that, initially, if you can manage it, see Dr S. That may be a bit of a wait - he is such a popular man! - but the first step will be the list of practitioners - did you see the contact option? Louise will send the list to you. You can email her also on:

    louisewarvill@thyroid.org.uk

    Hope this helps.

    Marie XX

  • I don't know if this will work for you, but if my doctors try to refuse a test I immediately say "I don't mind paying for it". This usually shames them into it. Of course, if yours don't give in, maybe they will accept your offer to pay and do the test for you. At least then you will get it done and come back here and post your results.

  • I think you need an urgent appointment to see someone who knows what he/she is doing. If you email louise.warvill@thyroiduk.org she can give you info on NHS Endos/Private doctors. I am not medically qualified but your clinical symptoms to me seem quite severe.

    These are a couple of links.

    web.archive.org/web/2010122...

    web.archive.org/web/2010122...

    web.archive.org/web/2006082...

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

    extract

    MYXOEDEMA

    Myxoedema is the medical term for severe hypothyroidism.

    Mucopolysaccharides – Gel-Like Substance.

    Myx = mucin (gel-like) - Oedema = swelling.

    The body makes mucopolysaccharides in normal quantities. When the thyroid is malfunctioning, they are mass-produced. Hence the bloated look that patients sometimes have. These mucopolysaccharides infiltrate into all the connective tissues and cause many problems i.e. joint pains and muscular pains.

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