Hi everyone, I hope someone can help me. I have ME and I'm used to feeling run down and exhausted, but since last October, I have felt the worst I have ever felt in my life. Every day is a struggle and I'm always drained. It was around this time my bloods started showing irregularities: slightly high platelets, TSH literally just outside the normal parameters, consistently high CRP and now borderline autoimmune results. I feel as though my life has just been a roundabout of repeat blood tests. Saw GP today (new GP as I've recently moved house) who said because my T4 wasn't outside the normal parameters yet, no treatment, the borderline autoimmune can be seen in healthy people and she's just to quick to blame this on my ME and send me off to struggle for another three months until next blood test repeat. I feel utterly let down and I don't know what to do to help myself. I honestly don't think I can struggle on another three months like this? Has anyone else had similar problems and can suggest anything I can do to help myself?
Thanks for reading.
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ladylou_uk
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I'm sorry you're feeling so ill. Unfortunately, your story is far too common. Being told what isn't wrong, instead of what is.
Can you post your TSH, FT4 & FT3 and antibodies results with lab ref ranges? It's hard to comment sensibly without this basic information. If you've had ferritin, vitD, B12 and folate tested post these too.
I'm awaiting copies of my bloods in the mail (the tests were done at my previous GP, I've just recently moved house), so once I get these I will let you know! Apparently my TSH was around 5.35 and T4 was 10 - don't have a note of T3 as yet, but once I get copies of results, will let you know! Thanks for the reply
Gosh it's really hard to move house at the best of times, but especially if you're feeling poorly. Get as much rest as you can while you're waiting for the results to come back, eat well and whatever exercise you can manage (without making yourself worse) will help. Good luck.
I kind of thought that myself, they were just trying to get rid of me with ME diagnosis...
I will chase up the copies of results with former GP practise this week, trying to give them time to appear.
I thought the results defo indicated hypothyroid, yet this GP refuses to do anything until the results get worse! She told me the ranges for the TSH were up to 5 and I was only slightly over and T4 9-21 so only slightly low, but from doing my research tonight, this really isn't the case. I do want to fight it and be properly treated, I so hope you can help me once I get these results up.
Although my situation was entirely different, my results at time of diagnosis were similar to yours - TSH only just over range, FT4 near bottom of range. TSH had been going up over a long time so GP did start me on levothyroxine - and numerous issues started to resolve.
Although it is important not to throw levothyroxine at anyone who, maybe transiently, has a very slightly high TSH, but not treating until you get worse is abject nonsense. Imagine being told "your appendicitis isn't quite bad enough to be treated", "Your leg isn't quite broken enough", ...
Exactly Rod! That last bit "your leg isn't quite broken enough" - that is exactly how ridiculous it seems to me. I was crying in GP office today, telling her I literally could not go on feeling like this and she basically told me "it's probably just a bad patch of your ME" - totally disheartened when I left. It's not a coincidence that my bloods started showing this when I started to feel worse, I wish they would see that! Thank you for your reply.
I feel for you too ladylou. I had to take someone to the docs with me to vouch for the fact that i am usually a capable, competent person and not a gibbering wreck!
Before the TSH blood tests came into being, in around the late 60's 70's, we were diagnosed only by the clinical symptoms which trainee doctors had been taught and dosed with natural thyroid medications until our symptoms went and we were well.
About ten years later 3 new 'diseases' were finally named, ME, CFS, and fibromyalgia. Patients had been sent to Dr Skinner (who died a few months ago) a Virologist and he was asked to see patients with mysterious ailments and he could tell on first sight that most of them had thyroid gland problems and not the above 'new' diseases. He was taught as a medical student how to diagnose us without blood tests. He was so upset by the BTA guidelines that he set up a World Thyroid Register to try to change guidelines.
The manufacturer's of the TSH blood tests of which doctors now base their diagnosis, I would like to know how much money has been made for these tests, including T4, and T3.
Thank you. It's lovely to know I'm not alone. I feel as though they just think I'm a hypochondriac, when all I really want is my life back!
As Clutter says - get those vit/mineral tests too - you CAN help yourself with these - unfortunately underlying deficiencies/low results are often ignored - why? It was suggested I too had ME/CFS after half my thyroid out - co-incidence!
I refused that diagnosis - as many can't get past that & it gets the blame for everything! (I'm not saying it doesn't exist just that thyroid trouble has the same symptoms!) Another one is 'depression', docs know just the right questions to put us off guard & bang - antidepressants (but cause not looked into!). Take this pill & go away!
My personal view only - they have a limited choice - so CAN diagnose ME/CFS/depression when blood tests are 'within range' or 'slightly out' but wait until you're WAY out before treating Thyroid problems. (clinical i.e. blood tests, signs & symptoms? not quite sure about that - evidence!... sigh...)
Just wondered if you are able to go private? There are some really good docs on the Thyroid UK list who will be willing to treat your symptoms rather than your blood test results. It's a shame we are forced to go down this route considering how much we all pay the NHS! But worth it if it gets us better.
Oh Spareribs, I can totally resonate with everything you say, GPs just wanted to label me depressed, then eventually ME, they don't want to do the investigations! Take this pill and go away is defo what I've experienced. Will get a hold of the mineral tests if I have had them...
Lisabax, I'm really seriously considering going private. I've got the list from Thyroid UK and will have a look at it today!
My husband went to new GP to try and get copy of my bloods for me (gave him letter saying I authorised him to get them that I signed and gave him passport to show I am who I say I am) and they refused to give him them due to "confidentiality". I'm too exhausted to go down there myself. Old GP have, so far, ignored my request for copies of bloods so chasing them up this afternoon. Feeling completely let down by the NHS. Tried to ask to speak to a different GP today and was told I couldn't until Thurs as the unhelpful GP I saw yesterday is on triage until then! Trying not to get angry, but very difficult...
Even tho I am not brave enough to do the same, insist your GP sends you to the endo. For years I have suffered, my GP said he tested me for thyroid but my endo said he could not have! So my GP lied to me....I went private as soon as I found a nodule in my neck, can't afford it but, I have really suffered for years and years and my GP, the nurse just not interested. So having a scan on Thursday, have all the symptoms, nodule, itching skin, gritty eyes, sick to my stomach, high cholesterol, hi blood pressure, all of it, and you would think my GP would want to know what is wrong. Anyway honey I know how you feel. You have the right to see a specialist....you will feel better as soon as you see him or her. Honest. It is almost comforting well sorta. X x
Thanks honey, so sorry to hear about all the palaver with you. Good luck with your scan and I hope it all goes well! Speaking to a different GP Thursday afternoon and going to tell them if they cant do anything for me, then they need to refer me. Will let you know how it goes! xx
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at my wits end
Newbie seeking Thyroid help
At my wits end! Any advice would be much appreciated.
