Strange consultation this pm with ophthalmologist. no nearer in getting this sorted out

I received some up dated blood results today from Spire that are concerning me. I was led to believe that I had Graves eye Disease 2 yrs ago from my own GP who specializes in eye problems.After going through A/E a couple of weeks ago because of very bad eye and temple pain and photophobia, I was put on 60 mg of prednisolone as a starting dose and then was given a referral to the eye clinic 5 days later for an assessment of the problem. One of the blood tests that were done, was the TPO WHICH APPARENTLY " GOT LOST". My own GP repeated this test in readiness for todays appointment. The TPO came back negative so that was a relief. In the meantime, i went and had private bloods at Spire on the 3rd April 04 which included TSH, T4 AND FREE T3. Also thought that I would get my lipids checked the same time as these have never been checked. These are my results- TSH =1.380 ( normal range 0.270 to 4.200). Free T4=15.28 ( RANGE 12-22), FreeT3 =2.7 ( NORMAL RANGE 3.1 -6.8). My last results in February were TSH 0.07 AND T4 = 20.1. No T3 as NHS do not test for T3

. So it looks as if my T3 is lower than it should be. As I am feeling over replaced ie tremors, over heating, and unable to eat solid food due to the overwhelming heat when i try, I am now at a loss. I belong to a health authority that ignores T3 readings and this is my only clue as to whats wrong. My lipid profile reads =cholesterol 9.0 ( normal range 0.1 - 5.2) Trigycerides 2.37 mm/l ( 0.3 to 2.1 ref range) cholesterol /HDL

6.0 ( RANGE = 2.5 - 4.5 ). B12 is 390 ng/l ( range 191 -663).

I am very worried about my lipid levels but Ive been wondering whether the prednisolone that they gave me for my eyes has anything to do with these raised levels? Also, as I am feeling over replaced and was tempted earlier today to reduce my thyroxin to 75 instead of 75/100 alternate days, is this still a good idea as my T3 is low and not getting enough conversion from the levo? Im in a real pickle and would appreciate some advice and support due to all of this.

Also, The ophthalmologist didn't want to know ANYTHING about my past medical history or about the Quetiapine crash I had in January. He told me that he ONLY deals with eye problems and basically didn't want to know how all this came about!!! It was a horrible experience and he didn't even look at my blood tests that I took with me for him to see!!!!.Just threw them on the desk and said that this was nothing to do with him! I came away feeling like I had done something wrong just like a child and it was all my fault that I had wasted his time!!.I WAS SENT THERE VIA A/E IN THE FIRST PLACE! and not the other way around! I DIDN'T ASK TO BE PUT ON TO PREDNISOLONE with all it,s crap side effects. THEY DID! i DIDN'T ASK FOR AN MRI SCAN - THEY DID! Sorry to be such a moaning Minnie but i feel as if I just don't know which way to turn anymore More tears. More paranoia now. Lynne x

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22 Replies

  • What a horrible experience, no wonder you feel bad. The guy sounds a real jerk who needs to go to charm school and learn some decent patient skills.

    I had similar eye/ temple pain and the loveliest ever GP said she was going to put me on prednisolone until the blood test results came back saying ' it's what I would hope someone would do for my own mother if this happened to her'.

    I thought that was such a lovely and confidence inspiring thing to say. As it turned out The results were all fine and was able to stop the prednisolone only a few days after I started.

    Where were you seen?

  • Hi fruit and nut. I was seen yesterday for the the follow up from MRI that they wanted me to have in the eye clinic ( dr no 1 ) re eye pain!. Saw 3 doctors in all since my visit to A/E when they put me on the steroids.He was the last one and a registrar apparently He told me that there was no need for me to have been put on them in the first place as there is very little wrong with my eyes apart from some fatty deposits on the muscles inside!( This is great news and a relief). So iv'e been through all of this for absolutely nothing - the steroids, anxiety, MRI ( WHICH I PAID FOR MYSELF DUE TO 7 MONTH WAITING LIST).I did make sure that he knew this had all come about since I was prescribed and took Quetiapine for 6 -8 weeks but he seemed totally disinterested. He told me it MAY have been an infection, OR it MAY have been side effects of the Quetiapine, or who knows? Maybe we will never know, is what he said!! He also said, " the TPO got lost"! Fortunately, my I was with my Gp when he looked at pc to check results and noticed it had gone missing, and so he got another one organised for me, which was negative. I told the eye Dr this, and NOTHING was his reply. Didn't elaborate.. OMG! Also I don't know what to do about the low t3. Do you know much about how long T3 takes to get back to normal range? Its only slightly under at 2.7 but I am Sooo anxious to feel well again. My GPs are not that well read on this subject unfortunately and don't test T3 or T4 anyway. Sorry for going on and on and repeating what iv'e already written, but I am very scared that if anything goes very wrong again as in January, I don't know what I would do. Thanks for reply. Lynne.

  • Sorry, I don't know much about T3 other than if it is low maybe you are not converting from at4 to T3 very well. Have a look at this little video, it explains it very well

    I take quite a lot of extra vitamins - Vit D, B12 because that was very low and I have a family history so I wanted mine to be higher, an A-Z multivitamin, 2 Redoxon slow release Vit C with zinc - I was advised by my pharmacist to take it when I was taking Carbimazole, I also take five Brazil nuts every day for magnesium/ selenium and I take CoQ10 too but I'm about to try ubiquinol instead and see how that goes. I rattle but I feel pretty good. Watch the little video though - I was interested to see that most of what I take was mentioned.

  • Thanks. Lynne x

  • Sorry fruit+nut. Just noticed that you asked me where I was seen and not when. I was seen at NHS hospital -Royal Glamorgan in South Wales. X

  • No problem - you are on the other side off the country from me.

  • Your t3 is very low so that means that you need more thyroxine, or if you are not converting your t4 to t3 you would need to take t3. I am underactive and can't stand the heat either. Upping your thyroxine will also reduce your cholesterol. The symptoms you are having can be either over or under active. Sorry I don't know anything about prednisolone or the eyes.

  • Hi, I had big problems with my inner thermostat before I was diagnosed hypo, and for a time afterwards too. I was uber hot all the time, and the sweat used to run down my face (I'd never had that in my life, not even during the menopause!) I couldn't wear winter woolies because I was so hot, it was a frustrating and uncomfortable time. Once I'd been on levo for a while it mostly sorted itself out. Have a read, particularly the 'Energy, Heat, and Metabolism' paragraph -

  • Thanks for all your replies and links to all above. Just spoke to my GP who has told me to ignore T3 reading! Only TSH matters and that is within range, so not to adjust anything. TPO NEG. Says all down to YES.....YOUV'E ALL GUESSED....DEPRESSION. Will start a good vitamin replacement. Think I will change my name to Dr Death!. Lynne x

  • Also, read up on the great cholesterol con! A leading researcher at Harvard Medical School found that women don't benefit from taking statins at all, nor do men over 69 who haven't already had a heart attack.

  • Thanks sazzyb. Do you have a link? X

  • Hi nezzykins, the study was in the BMJ (John Abramson from Harvard medical school)

    Also, an article in the Mail a few years ago

    Also worth a read:


  • Depression! My goodness why did none of us think of depression, how could we have missed it. Doh!

    (Just in case anyone thinks I have totally lost it - that's sarcasm )

  • :-D

  • Hi fruit and nut. Yes!! That ole chestnut again - depression hehehehe. X

  • I wonder if reverse psychology would work and we all went in saying we were all totally depressed would we then be told were not depressed it is our thyroids that are causing the problems?

  • Lol. Yes fruitandnut! They would have to build a lot of psychiatric hospitals to accomodate us! X

  • Nezzykins you might offer to loan your GP any of the books most of us here have read, to update his knowledge. ...... Or possibly change doctors :-)

  • Yes I leant my GP books on Lyme Disease and other things.

    He said I harassed him. He lost my notes.

    And removed me from the practice:

    He sent the police to my house.

    I was returned to the practice a year later.

    I was registered with another member of the practice.

    Who said there was no record of my Lyme Disease:

    The doctor did not tell his partner I had Lyme and he had treated me the previous year. He even told me his brother had Lyme Disease as he was a game keeper.

    I complained to the NHS Ombusman they did nothing.

    I am starting another complaint.

    I don't think they read only what the drug companies and the government tell them.

    The NHS hospital managers have told threatened doctors if they say their patients have problems with electropollution.


  • Hi hypnoteq. I think it would be pointless to aggravate them by giving them books to read as I believe I would be struck off as carolr was ( next post). No Drs in this health authority use anything other than tsh for thyroid management in the community so where would that leave me. Honestly, its a lost cause. I think its to do with saving money - budgets etc? Who has the power to override this practice I would like to know. Lynne x

  • Nessykins,

    If it's the NHS you have gone to if

    it's the NHS complaints procedure. Private the Healthcare commission may help.

    Loosing notes that's a good one.

    My NHS GP notes went missing.

    Between 2006 and 2009.


  • Hi carol. Hmmmm, notes went missing eh? DOH yet again? This little sweet empathic angel of an ophthamologist was Nhs. TBH with you, I would be putting in complaints left right and centre for every Dr. I see if I went down the road of complaints procedures. Just haven't got the strength to fight them anymore, and the stress it would cause me, especially as I am supposed to stay away from stress as much as is possible. I have even considered moving from this area to a place where the whole thyroid panel is considered, but this seems few and far between from what I have read on the forum. Ta for reply. Hope you are keeping well. Lynne x

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