Please may I pick your brains

Here are my latest blood tests and I could really do with some help from the great minds who visit this page, all help and pointers gratefully received.

In November I was contacted and told my blood results were pointing towards me developing a full blown autoimminue disorder, there results were;

1. my immunoglobs IgG were raised to 16.0 GPLU/ml the range is 0.50- 9.90 GPLU/ml

2. my IgM level was 0.8 MPLU/ml the range IS 0.80- 9.90 MPLU/ML

3. My TSH was 0.15mu/l the range isn 9.0019.00pmol/L

4. My Free T4 is 13.8 pmol?l range is 09.00 - 1900pmol/L

5. My proaction was 179mu/l the range is 109.00 - 557.00 mu/L

Today my bloods came back with the following;

6. My IgA is now 3.13 g/L, the range is 0.80-2.80g/L

7. My TSH is 015 mu/L range 0.40-4.900mu/L

8. My free T4 is 13.8 pmol/L the range is 9.00-10.00pmol/l

I am currently under the Rhuemetology clinic at the Queen Elizabeth Birmingham and Doctor Patels M.E clinic at the George Elliot, Nuneton.

I was lucky enough to see Doctor Skinner, an amazing man who offered to treat me with levo thyroxine, the one drug bar the progesterone only pill to benefit my health.

Thanks for taking time to read this xxx

18 Replies

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  • Hi Lettie, I am picking your brains!! I suffer RA plus borderline under active thyroid. I am getting worse all the time with both conditions. How do you get on at QE rheumy. I have been thinking of asking to transfer there from Shropshire, but the distance is far so I need encouragement to make the move. Maybe you could advise me.

    We who suffer auto immune spectrum disease have such a lot to put up with and have to persevere so much to get proper help. I think you and I have a lot in common with our problems. Maybe you could tell me what you think. Lynda x

  • Jockety theres some new immune altering drugs for RA that are supposed to be really good

    you need to start making a big fuss and tell them you want to be treated with them and not things like gold injections , methotrexate ,etc which are so damaging

  • Professor Simon Bowman heads up the Q.E clinic. Bowman is the top Rhuemy in the Midlands and has some National standing. This means he is involved in plenty of research and trials. The Q.E has loads of parking and on site facilities to make a trip to Brum easier. It is a huge clinic with lots of registrars. Prof Bowman is thorough, he seems to focus on the more unusual and less straight forward, like House but without the madness ( I think). I will warn you though, he is not dynamic in the slightest, everything he does is slow and considered, when you feel very unwell this can be frustrating but Immune Disorders are complex and it cannot help to be under the care of one of the top doctors nationally ?. Good luck and keep in touch x

  • Hi Lettie, thanks for the information re. QE. How long did you have to wait for your first appointment? I have very complicated issues so maybe this could be a good place for a referral. Only downside is the distance, when you are in such pain it's daunting, but might be worth it. Lynda x

  • As you have RA - have you had your thyroid Anti-bodies checked - Anti-TPO and Anti-Tg. Auto-immune issues often go hand-in-hand. You can have completely in range thyroid readings but still have the anti-bodies. Without them being tested how would they know ?

    I have Hashi's and Crohns....

  • Hi marz, I feel completely abandoned by rheumy and endo (he says he does not need to see me again). I have been running at borderline for about 10 yrs now. Last year my GP tested me again and said defo running as under active so put me on low dose thyroxine, 25mg. He referred me to endo who disagreed and took me off thyroxine. I am still exhausted, putting on weight and nowhere to turn to. I was diagnosed with empty sella approx. 7 yrs ago, (pituitary gland disappeared) . As far as I know I have not had the tests you mention. As I said, I feel abandoned. Lyn x

  • Please ensure you have your Thyroid Anti-bodies tested - that is the first step - then when you have the results post them here. Gluten free diet ? VitD B12 Ferritin Folate Iron - all these test results need to be HIGH in their ranges. Auto-immune issues - like RA often start with the gut and its less than optimal health. Check out Dr Tom O'Bryan and The Gluten Summit - it took place on-line before Christmas - a follow-up at the end of this month. If you are serious about your health then do listen. Professor Yeheudi Schoenfeld is a speaker on Auto-Immune issues - that is his speciality in Israel.

    If you are without a Pituitary Gland - then surely that warrants VERY special treatment. Can you post your last Thyroid blood tests and the ranges - then someone can give you more help and support. Think we have hijacked another post - many apologies to Lettie999......

  • No need to apologise! I am learning a lot here, thank you

  • Hi Jockety, I too live in Shropshire and yesterday I went to QE rheumy and I have to say for me they were not helpful in the slightest I haven't been diagnosed with RA although a GP at the begining of last year put me on steroids which eradicated all my joint pain so he believed I had sero negative RA, however the rheumys won't have a bar of this and tell me that I won't ever get a diagnoses of what is wrong with me! How they think thats acceptable when I have been incapacitated for the last 4 years is completely beyond me but that is the situation I am in at moment. Feel free to message any time you like always good to talk to people who are in similar situations. I too have auto immune thyroid issues.

    Sheryl. x

  • Lettie

    As your TSh is low but so too is your free t4 i would suggest you are hypothyroid thanks to Central Hypothyroid

    have they even thought of that scenario

    too many doctors and endos cant be bothered to think or test for it as they assume its rare

  • Thanks for you reply, I was worried that my Endo will suggest my TSH was low because I am on Levo ? It was Dr Skinner who put me on Levo and I suspect my Endo doesn't agree. I have never heard of Central Hypothyroid until I read your response. My final appointment with my Endo is soon as I was referred to an M.E clinic he runs, I am now trying to find a good private Endo in the West Midlands, thyroid U.K. Have none listed. Thank you once again.

  • Hi can you tell me how the progesterone only pill helped you, as I have just stopped taking it on my doctors advice to see if that is causing my symptoms. I have also been told I have cfs / ME! Thanks.

  • I am obviously have no medical training what so ever, this is just my experience. Every so often I get a flu like illness (no snot or cough), my joints are stiff and sore (especially my sacroiliac), my muscles have no power, a high temp, mouth ulcers, hair loss, exhaustion, I would produce breast milk, my brain goes slow, numbness, tingling the same as everyone with a thyroid or auto immune disorder on here suffers, I also was found to have Hughes Syndrome.

    My Doctors told me it was depression. I noticed that my periods often triggered a flare up and I also felt I had a problem with too high a levels of oestrogen, I had PMS, spent the fortnight prior to a period depressed and had other monthly symptoms too gross to mention. My doctor would not agree to test my hormones so i asked to be prescribed Cerazette which is progesterone only. Almost instantly my depression was gone, the frequency of my flu like flare ups lessoned too, the only other drug to have had such an effect has been Levothyroixne, Doctors have suggested that this is a 'placebo' effect but I was also on an immune suppressant and this made no difference what so ever. Before the Cerazette I did allow the GP to convince me to try a different pill with contained oestrogen and it turned me into a depressed, poorly nightmare. I considered the coil but felt I needed the extra progesterone to counter balance my oestrogen levels.

    My doctor too suggested CPS/M.E during the initial phase of trying to be diagnosed, I was not willing to accept this as I believe that CFS/ME are a symptom not a cause.

    Hope this helps and sorry if I have bored you.

  • You didn't bore me at all...it's good to hear other stories. I don't believe I have cfs/ ME either, but nobody seems to be listening. X

  • Post a question on this site detailing all of your symptoms and the good people on here will recommend which blood tests you should ask your GP for, once you have had them done post your results ( and the ranges) and you will get pointed in the right direction for specialists, treatments and questions to ask your doctor. It's really helpful, I have found that you have to go to the GP with a mindset of not asking for help but telling them what you would like. Good luck

  • Thanks. Had blood tests done through Blue a horizon last week and off to see GP tomorrow :-) x

  • Fingers crossed, if you feel comfortable doing it post your results in a question on here, there are some very clever people who can help.

  • I know too many women (in many countries) who have been diagnosed with CFS/ME, some for over 20 years, only to finally find out after years/decades of suffering from debilitating symptoms (extreme fatigue, painful joints, thyroid problems, allergies, autoimmune etc) that they've got lyme disease and one or more of its co-infections, and also EBV, CMV that have reactivated (rather than staying dormant viruses in their body). For over 10 years I though I'd got Rheumatoid or reactive arthritis and thyroid problems, although doctors said ''no'' but didn't come up with anything either, and as symptoms were cyclical (coming and going, changing ''site'') I linked it to hormones being a woman - do check UK LDA website for more info, just in case. Unfortunately, like with "thyroid maddness" there is lots of controversy around lyme - i.e. difficult to diagnose (no blood test good enough to say you definitely don't have it) and get proper treatment. Medical 'establishments' around the world are in denial and saying it is rare and easy to treat, truth is the opposite, unfortunately. I'm not trying to do scaremongering or imply that everything is lyme, but certain symptoms ''alert'' me to urge people to check that out also. Kind regards.

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