REALLY REALLY SCARED

Hi in a nutshell 5 years ago picked up TSH high end of scale don't know what it was. No symptoms felt fine. Two years ago back docs really bad symptoms depression, weigh gain told underactive thyroid. On thyroxine one year referred to useless Endo was a professor but of Diabetes. Took me off thyroxin and monitoring. Loads tests done, bloods sent to Birmingham etc nothing in writing but told verbally everything ok. Had pituitary scan came back mishapen pituitary but ok. Seen Endo Dec and went onto computer screen and no results there. Did not know where they had gone but must be ok if he had telephoned and said so previously.

Changed Endo lots bloods done creatine and electrolytes, liver and bone profile, FT4, thyroid antibodies, thyroid function test. Don't have results but told some of the hormones are dangerously high. I show results of under and over active thyroid. Told either seriously I'll or it's just thyroid trouble. Started talking of tumours liver, kidneys, lungs. Some hormones high and presenting as results ou see when people have tumours. Told I am in good hands and will be thoroughly looked after. Managed to speak to one of the secretaries who told me she has worked at hospital number of years and nothing jumps out at her TSH is 12 but she has seen it be 100. Now have letter to have bloods done again to check results same and to have ultrasound on thyroid next week. Does anyone know what could be going on? I have asked for copy of blood results but they seem loath to give them

9 Replies

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  • Hi First of all you need the Free T3 test as that may show a different picture. Have you had an ultra sound of the thyroid? H I am assuming you have the nuclear and CT scan of the PTH? If the Q. E. huge hospital and quite separate dept. for diabetes, I think it is not even on the same floor. You should be under a really good general Endo. I have autoimmune diabetes and hashimoto autoimmune Hypo) and other things that my Endo looks after, very well indeed.

    Are you seeing Prof. . F at the Q.E? If so she is considered brilliant by patients and other consultants too.Graves , autoimmune, can cause swings in thyroid from Hypo to hyper.Where ever you had bloods done, ask for copies with ranges, receptionist at GP and secretary to consultant at hospital If any question about liver or kidney you should have had scans, especially liver cannot be diagnosed on blood results alone, LFT`s. Liver is a funny and good organ , not like other things Also weekly repeats of U`s and E`s ( kidney function) and LFt`s ( liver function). Have you had an MRI, ultra sound, CT san if they think wide spread tumours? What tests have you had.

    If Q. E. I see a wonderful hepatologist there, that is just liver, nothing else. Also there, I see, one of the top nephrologists ( Renal;) .Actually I see lots of there consultants. If seeing 2 or more consultants there , then they always discuss everything with each other and you. They believe in everything being told to the patient, and do so., even suspicions.If you want to reply , click on "reply to this" under my post, or if want to discuss docs names etc then send me a PM, click on my name. Names not allowed on open site any way would not be right to put them.

    I hope this helps.

    Best wishes,

    Jackie

  • I see you have had a pituitary scan - that would be my first thought but if they have definitely said it's not pituitary related, then you have to believe them. Misshapen sounds odd though. Hashimotos is the most likely form of autoimmune to give the hypo-hyper swings.

    TSH of 12 is not a trivial matter, at that level it could make you feel very ill, even though some may have that level and not feel ill, if my TSH were up to 12 I would likely be bedridden.

    If your blood has come back with high 'tumour' markers they will likely do a scan, but if they are actually 'inflammation' markers they will then do a test for tumour markers. In autoimmune disease there are times when the blood tests give misleading results. Last year my husband, who has another autimmune disease, Psoriasis, had odd blood results and ended up in the local Macmillan ward having tests for Leukaemia and bone cancer, but it proved negative, yet they were convinced that something was happening.

    Considering that they have already terrified you with incomplete information, they really have no reason to hold back the blood test results, is it your GP or the hospital who have been reluctant to give you the results? Perhaps it's worth being insistent.

    Jackie has told you a lot about the hospital, I don't know about that being in a different area altogether.

    I do hope that you can get something positive soon.

    Marie XXX

  • It is your legal right to have those blood test results under the Freedom of Information Act. But sometimes they like to maintain the mystery and the illusion that the patient is too stupid to understand their own results. Insist on getting them. You need to understand your results (we can help you) and keep your own records so that they can't give you the run-around as they seem to be doing at the moment.

    I agree, a TSH of 12 is probably what's making you ill (means that the actual thyroid hormones are low) and you should already be on thyroid hormone replacement.

    Hugs, Grey

  • Hi, Chickens. So sorry to hear of what must be a total nightmare for you. You do what Greygoose is advising - get the damn blood test result...turn your fear into fight. Like she said, you have the absolute right to a copy of your blood test and you can post them here.

    The thyroid is the engine for all the other systems of the body, so if yours is rocking and rolling, everything else will be too. The word tumour is enough to give anyone the horrors, but don't let your mind run away with you - they just don't know.

    Her's the thing. You had a highly active thyroid five years ago, according to the blood test signpost of a high-ish TSH. Then after 3 years you had symptoms of weight gain and depression etc - those are symptoms of an underactive thyroid. If you had too much thyroxine - or T4, which is the starter hormone - sloshing around your bloodstream for those intervening 3 years (and you don't know really that it wasn't much longer) then your body probably converted the T4 (the hormone secreted by your thyroid) to reverse T3 - which blocks the uptake of the useful thyroid hormone T3 into your cells (T3 is the thyroid hormone used by the cells which is made from the T4) .

    This means that you have lots of T4 in your blood but none in your tissues. It can give strange readings on blood tests, bugger up your other systems, look like you are overactive on those tests when really you feel so bad because you are functionally underactive.

    Hope this makes sense - but the thing is, we can help ourselves. You need to SLOWLY work through this and, know this. Your body is programmed to heal. You can help it.

    With love and light to you - keep us posted of your footsteps to health - we'll all help.

    Steph. xxx

  • +1 on the thrust of the above C. It's tough when you are ill and could really use being minded, and it's different for everybody - but that's often when we have to take responsibility as best we can for boning up on the topic and steadily and determinedly working our way through the medical and life mazes.

    We're learning lessons/teaching life lessons to others and to ourselves - all at once.

    Given the range of possible issues mentioned it's probably best to get to a doctor who knows what he/she is doing, and that cares. My experience over many years suggests that it's much like any other professional/trade services scenario. At one polarity there's the good and caring, with the lousy at the other - with a great swathe of in between jobsworths of various shades who if you get lucky may help, but tend to be heavily influenced by fear, self interest, prejudices and the like.

    It's not as simple as getting to a good doc, and kicking back. You do your best, and then try a few steps. See how it went and change tack if needed. Even with a good guy it works best as a co-operative partnership where your instinct and input are as important as anybody else's. Run from the guys that don't want it. There's something very magical about it all if we can get it right - help (in the form of seeming random events) does often seem to materialise when we need it, but we have to keep on putting our best foot forward.

    I was quite ill over the many years while I was hypo (and repeatedly told my bloods were normal), but my TSH never got that high. Probably because my thyroid was making reasonable amounts of hormone but due to other issues unable to convert it to T3 to use it. The free T3 test sounds advisable - as well as some broader screening.

    Don't panic at the mutterings about tumours. You never know (either way), but my experience again was that I was told of possible adrenal, kidney, and liver tumours at different stages. They eventually found months later that I had a greatly enlarged thyroid (last place they looked despite hypothyroid symptoms writ in letters 40ft high - how they missed it i've no idea given the symptoms and the size) which did turn out to contain an encapsulated tumour, but a thyroidectomy (thyroid removal in 2005) and work on replacement (hormone) later and these days i'm in pretty good shape.

    The hospital never told me they had decided that the other suspected tumours were in fact a re-growth of spleen tissue following ann accident years before - it took my demanding a consultation with another doctor months later and several weeks after they has clearly lost interest to get some answers.

    Hope this helps, and doesn't have the opposite effect. :) .........

    ian

  • Thank you all for yor comments. I have verbally asked for a copy of my blood tests but was told they would have to ask the consultant. I have put it in writing that I want them. I have a letter from previous Endo with bloods taken in January the results were free t4 19.8, free T3 6.5 and TSH 12.31. Urine free cortisol was normal at 30 Nmol/24 hr. these are only results i have ever been given.

    I was always told my thyroid was underactivebut but when taken off thyroxine I was over active. First 6 weeks on thyroxin felt so much better then increased dose and symptoms back again. Brain fog was awful whilst on it when I stopped it brain fog first thing in morning disappeared.

    This site is such a blessing. I honestly thought the way I felt was one of those things just how you felt with the illness. Then I found this site and I had a gut feeling about the professor I thought he is out of his depth here, after all his speciality is diabetes not thyroid. I have been reading on here and researching and I thought not good enough I am changing Endo. And I did. Thank you

  • Just a tip, Chickens, make sure you always get the ranges, because the numbers aren't much good without out them - except for the TSH and yours was much too high there. But for the others, every lab has its own ranges so you can't interpret the numbers without them.

    Hugs, Grey

  • Access to your NHS records (Data protection Act 1998)

    nhs.uk/chq/pages/1309.aspx

    OK you only want your blood test results, not full records, but they are Your data. J x

  • Hi Chickens, as a patient, you have the right to see all or any of your medical records and can request copies at any time. As spareribs says the right to access records is contained in the Data Protection Act 1998 .

    If dealing with your GP, I normally ring reception to ask for copies of my blood tests. If dealing with a hospital consultant it is best to put your request in writing (as you have done) and address the letter to the medical records department of the hospital in question. They deal with all requests from and on behalf of patients. They have to get the consultant's signature before releasing copies to you but this is just routine and they cannot refuse to supply them.

    Of course if the records have been lost you will need repeat tests.

    Best of luck, M

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