Diasastrous visit to local Endo

[Guest guest]

Apologies in advance for the ultra long post, congratulations if you manage to get to the end in one sitting and without needing a nap in the middle!Well I had the appointment with an Endo at the local hospital the week before last. After keeping me waiting for two hours after my appointment time I finally got in to see him and his first words to me were "I saw you in 2007 and you're here now complaining about the same things you were then too." Me - total confusion, I have racked my brains and really can't remember going to see this guy. I don't even recall ever being referred to an Endo previously. I knew then it was a waste of time trying to put across my point and to be honest I was too busy thinking about how on earth could I have forgotten this that it was difficult to even think coherently or remember the things I wanted to say.He then asked if I had followed up with the GP what he had suggested last time I was there.........that I could try combination treatment with T4 and T3 but he wouldn't recommend it. Did you? Surely I would have remembered something as big as that? Surely I would have gone to the GP and asked for it then? Not that I recall. I really can't believe that he would say that to me and I never followed it up.He handed me something he had printed out for me, there is a link at the bottom of it that shows where it is published online which I have shared so you can see how it was a total waste of my time even going to see this man: http://www.uptodate.com/contents/treatment-of-hypothyroidism?source=search_result & search=hypothyroidism+treatment & selectedTitle=1~150He said that my TSH is `slightly' suppressed and that he wants me to reduce my Thyroxine from 150mcg to 125 mcg but that all my other results are fine. He also said that the TSH test tells you everything about the levels of thyroid - T4, T3 everything and that my results show that I have plenty of them all and there is nothing wrong with me.He has also said that I need to look to other avenues to explain my symptoms (symptoms that he didn't want to hear about - he cut me off before I could tell him them) instead of trying to blame the thyroid. Seemingly when I went to see him last time they tested for other causes for my exhaustion (it is this one symptom they latch on to and ignore the rest). The tests he ordered were:Thyroid AntibodiesAfternoon CortisolViral titres including:sackieEB virusBorrelia Serology (Lyme disease), because of where I lived at the time, although I have since found the lab did not carry out this test and the consultant did not follow it up.I did manage to tell him that I feel like I am being strangled and he felt my neck and will send me for a scan of my thyroid – I had this scan on Tuesday and the radiologist said to me that he could see straight away why I am Hyperthyroid and suffering from symptoms. He then said that when I had the RAI treatment that "they did a right number on you" and gave me far too high a dose. Seemingly I have so little thyroid left that he struggled to find it at all. I don't know what the implications of this are and despite googling haven't managed to find much at all.So, armed with the knowledge that he said he would write to the GP and say that I could try combination treatment, although he wouldn't recommend it, I had an appointment yesterday. I came away in tears because the GP refused point blank to prescribe T3 and said that according to the letter from the Endo he doesn't want me to have T3. The exact words in the letter were: "We did once again discuss the possibility of combination treatment with Free T3 and Free T4 and I have strongly recommended against this." Not quite what he said to me during my appointment. When I told the GP of the actual words that were said to me by the Endo he didn't believe me and is going to write to the Endo for clarification. The GP said he can only prescribe me T3 if a consultant says so and the consultant says no.The GP then turned round and said there is nothing wrong with your thyroid; you need to stop looking to the thyroid for the cause of your symptoms and look elsewhere. OK I said; test me for other things to rule them out. He then said I have been tested for everything I could possibly be tested for, referring to the list above, meaning sackie, EB virus and Lyme Disease. So that is that. I asked what my Ferritin level was now as I have been taking the Ferrous Sulphate since the beginning of September when my level was 4 ng/ml. He said the level was 19. I asked him what the range was and he said 24. As I didn't have my previous results with me and no specs so I couldn't read the screen I knew that didn't sound quite right but couldn't argue with him. Looking at my results from the last time the ranges are: 24 – 240 If menstruating and 30 – 480 not menstruating. Well I am not menstruating but he didn't even ask me that. I also realised that they will be quite happy getting me to 24, the lowest part of the range then discontinuing the Ferrous Sulphate.I also got a print out of the results from the thyroid antibodies test and they are as follows: ThyroidPerixodase IgG (TPO) Antibodies. TPO Antibody: <0.01 IU/ml(Normal Range: 0 – 100).The result is NEGATIVE: Interpretation: <60 Negative, 60 – 100 Equivocal, >100 POSITIVE. I asked for print-outs of the Endo's letter from 2007 and from this visit and have posted them here (I'm not sure if there are issues with me doing this but if there are we can remove them) and would be very interested in hearing your comments regarding what he has said:24.07.2007 Letter from Dr H.Problem: Post radio-iodine hypothyroidismChronic fatigueThank you for referring this lady to the Endocrine Clinic where I saw her on the 24thof July. As you will know she received radio-iodine in 1994 for what appears at the time to have been thyrotoxic Grave's disease. She was intolerant of anti-thyroid drugs and for this reason she proceeded to radio-iodine. She developed post radio-iodine hypothyroidism fairly quickly thereafter and was commenced on Thyroxine in the conventional way.For several years she complains of feeling constantly tired, tending to gain weight and she has noticed that her concentration and memory are both particularly poor. Over the past year or so, having considered a variety of other options she had become convinced the root cause of her symptoms are inadequate thyroid hormone replacement and to some degree this conviction has been reinforced by a variety of information that she has gleaned from the internet and in particular websites based in America.She is well informed over normal thyroid physiology and understands that Tri-iodothyronine is the active thyroid hormone and that in patients receiving Thyroxine exclusively, normal T3 levels are maintained by peripheral conversion of Thyroxine. I have explained to her that the pituitary thyroid hormone receptor is a receptor exclusively for T3 and that the maintenance of a normal TSH on Thyroxine replacement is therefore dependant on the conversion of T4 to T3.Her most recent thyroid function test taken on the 3rd of May do indeed show good thyroid hormone replacement with a Free T4 of 23.2 pmo/l and TSH 0.12 mlU/i which is in fact slightly below the quoted reference range. I would certainly concur with Mrs Mackay that we should be aiming to maintain her serum TSH at or below 1mlU/i and in this context I think this goal has been achieved.I have explained to her that the evidence does not support convincingly combination treatment with T4 and T3 though if she is very keen to try this it would be reasonable to substitute 20 mcg of Tri-iodothyronine for 25 mcg of her current Thyroxine. I will leave it to yourself and Mrs Mackay to decide whether she wishes to pursue this option though I suspect she will not.I have also pointed out that we need to consider other causes for her chronic fatigue and ill health, as, focusing on the thyroid, if it is not the true underlying cause and will not be productive.While she has no clinical features of hypoadrenalism it would be important to exclude this particularly as the initial cause of her thyroid disease was autoimmune. Given where she lives and her exposure to ticks, I think it would also be important to consider Lyme disease before ultimately making a diagnosis of likely chronic fatigue syndrome.To take matters forward I have repeated her Free T4, Total T3 and TSH together with thyroid antibodies, afternoon Cortisol, Viral titres including sackie, EB Virus and Borrelia serology. If her afternoon Cortisol is equivocal, I will recall her for a short Synacthen test.She in any event holds a two month review appointment.P.S.Test results 24thJulyFree T4 - 23.4pmol/lTSH – 0.28 mIU/lSerum Cortisol 213nmol/litre (Afternoon)*No reference ranges supplied18.10.2011 Letterfrom Dr H.Problem: Post radio-iodine hypothyroidismThank you for referring Mrs Mackay to the Endocrine Outpatient Clinic where I saw her on the 18th of October. I have in fact seen her about 4 years ago in 2007, with exactly the same problem and I enclose a copy of my letter dated 24thof July 2007, in case it is not available to you in her case notes. Essentially my comments today would be no different.Mrs Mackay has hypothyroidism dating back to around 1994 following radio-iodine and since then she has complained really persistently of feeling tired, forgetful and feels that she has persistent symptoms of thyroid under activity despite the fact that her thyroid function tests objectively would suggest adequate replacement. She has read quite extensively on the internet about thyroid replacement and is not entirely convinced that the serum TSH is a good marker of adequate replacement.I have once again gone over the principles of normal thyroid physiology and pointed out that as the pituitary only has receptors for T3, the presence of normal TSH would indicate the presence in the serum of sufficient Free T3 to inhibit TSH production and is therefore our best biochemical and physiological marker of the adequacy of thyroid hormone replacement.We did once again discuss the possibility of combination with Free T3 and Free T4 and I have strongly recommended against this. I have given her a print out from Up To Date, which contains a comprehensive evidence based review of the subject.In 2007 I considered other possibilities as to the aetiology of her chronic fatigue. Her short Synacthen test was normal; there was evidence of previous infection with sackie viruses which may be relevant; her EB virus serology was negative. I had intended to measure Borrelia serology, but in fact this was never reported by the laboratory and I have therefore sent a further sample today.As her TSH has recently been persistently slightly subnormal with Free T4 levels towards the upper limit of the normal range we have agreed it would be appropriate to reduce her Thyroxine to 125mcg daily. She will require a fresh supply of 25mcg tablets to facilitate this.Finally I have agreed to arrange a thyroid ultrasound scan as she complains of troublesome swelling from time to time in her throat, though there is nothing palpable.I will let you know the results of the outstanding investigations once they become available. I suspect it will not be necessary for me to see her again in the Outpatient Clinic.P.S. Test Results18th OctoberFree T4 – 22.8pmol/l (9-24)TSH – 0.02 mIU/l(0.34-5.4)My hopes for getting better through the NHS have been well and truly dashed and now all my hopes rest with Dr Skinner (appointment in 3 weeks and counting), in addition to the advice and guidance on this forum. My other half wants me to order T3 privately and start taken it myself but I am going to wait until I see Dr Skinner and see what he says to me. If Dr Skinner reiterates what the Endo and GP have said then I will accept that and try to get on with my life the best way I possibly can whilst feeling like this.Right now I actually feel like just dropping it all as I just don't have the energy or the will to deal with it any more, not to mention the capacity for remembering all the little ins and outs etc. It has taken me 6 hours just to put this post together; just as well I had the day off work as I now just want to sleep. I have never felt so low in my entire life. My other half would love for us to go out for a couple of drinks tonight as he has a rare day off tomorrow, which I used to enjoy doing so much, but now it's just too much effort (It's just the local so I don't even have to get dressed up) and I'll probably end up doing my usual Friday night party trick - asleep in front of the TV by 7pm. I'm only 45 years old for heaven's sake.Lynn