Desperately sticky situation and how to respond re T3 and multi-disciplinary mtg

[Guest guest]

Hi allI have not been on the forum for quite some time as I have been without internet communication since well before Christmas. I also was feeling much improved healthwise and preoccupied with dealing with urgent matters which I had been unable to attend to previously, due to ill health.I am back self medicating on my original dose of 150mcg Cynomel but am still trying to shake some symptoms remaining from lowering my dose.Please could our TPA experts and members offer me advice on how to respond to my endo. He is a lovely man but in the shackles of the RCP et al. You may have to start from the bottom as his very rushed email (hence the typos) is in response to my email. I was extremely ill when writing to him which is why it took three days as my brain was barely functioning... so please forgive my repetitiveness. I feel I may have touched a nerve in some of the things I said or links I attached.Thank you to all who manage to trawl through this.My TFTs are:(I took no T3 for 24hrs before the test ) May on 125mcg T3 (I had run out of T3 and hadn't taken any medication for about one week before the test and was very ill when I saw him !)TSH <0.05 (0.3-4.2)fT3 2.0 (2.5-5.7)September on 125mcg T3TSH given as 'suppressed'fT3 4.0 (2.5-5.7) December on 150mcg T3TSH <0.05 (0.3-4.2)fT3 3.4 (2.5-5.7)LoveJacquie----------------------25.1.12Thank you for your recent e-mailI will post a copy of the tests here as requestedregarding the change in symptoms you mention and the role of TSH and free T3 as markers of this:Free T4 was the blood test we mentioned that would be done automatically when thyroid function is tested which is the level that was not needed in view of the T3 therapy that you are taking, TSh does have a role in this and is the brians response to circulating and intracellular F4 and T3 levels, the blood brain barrier allows certain hormone across and these levels enter the cells in the pituitary which then secretes TSh in response to that, so using TSH as a morker of this is a valid test. [i'm confused?] As discussed we would aim to have a TSh detectable and ideally with in the lower half of the normal reference range as most data suggests that complete suppression of TSh is not ideal and may be associated with side effects form thyroid hormone replacement therapy.We do therefore need to try and reduce your total T3 dose, i note s commnt that you are on a high dose of T3 and his other comments regarding intracellular signalling and pathway changes. Overall howveer there is a limnit for how much risk we can run by over ttreating and your recent blood test ssuggest that is where we are running things, or more toward sthat than i am comfortable withWe have discussed your case and the recent e-mail with the references and data you mention in this e-mail at out Multi-Disciplinary Endcorinology and Biochemistry meeting here earlier this week and the consensus from that would agree that we are over doing the T3 replacement slightkly based on your recent blood etsts and need to try and weean this down, if the symptoms are worse with the canges we made to date we can do this weaning down a little more slowly, but our aim should eb to rerduce this as much as we can to reduce the risk to you from this replacwe3emnt regimen as well as getting the symptoms as well controllede as we can [how is this possible without making me severely ill?]i will drop a note to your GP regarding the T3 trherapy and prescriptions and if you decide that coming to see us here at Chelsea and Westminsetr is too dificult i am happy for them to refer you to a duifferent specialist team and if so let me know who and wheer and i will forward them copies of all relevant information they would need to help speed that up.Regarding the other test and options, i will send forms and details through to you once your notes come throught to me re what we can do regarding these, as for referrals through to different in house teams, unfortuantely our Trust and local PCT do not allow tertiary referrals for anything unless your GP agrees and arranges that, politics i am afraid,I will drop a note to GP and post out results as requested ----------------------------------------From: Jacquie Friday, 20 January 2012 Dear Dr SApologies for the length of this email. I started taking 100mcg/d T3 on Wednesday 11.01.12. It's been more than a week now and my fibromyalgia has returned and I am feeling hypothyroid again. Last night was the first time I left my home to go to the local shop three blocks away and my legs were so weak and heavy that I battled to make it back home. I had to keep stopping to take a break before attempting to walk a few more steps. This was how I was before being on ANY thyroid medication - my legs were so weak that they would buckle unexpectedly under me. The paranoia I felt then when crossing the road, in case my legs would buckle unexpectedly in the middle of the road, has returned. I had many falls (some rendering me unconscious) before I had the courage to increase my dose of T3 to my dose of 150mcg/d. This had been the best thing I could ever have done for if I hadn't I would have still been bedridden. My headaches/migraines have also returned. I am also so lethargic that I have not left my bed since Friday 13th when I had just enough energy and strength to finish putting up the top fitting venetian blind in the spare room (it took three days). I have tried to put up the last venetian blind in my bedroom but my arms are too weak to lift the drill above my head, or even the blinds to install them. My back pain has worsened and I have difficulty speaking loudly when under stress hence when on the phone to someone they are constantly saying 'pardon, can you please repeat that'. My night sweats and sweating during the day has also returned (this was one of my worse symptoms besides muscle weakness, chest pains, migraines and lethargy before starting ANY thyroid hormone). The sweating, when exerting myself, never did go away completely but at least I wasn't drenched in sweat constantly and my night sweats had gone away completely. I had to do 'strenuous' work such as mowing the lawn, putting up blinds, housework, carrying shopping, etc for these sweats to return. Now these sweats happen when just lying in bed which I have been unable to leave for the past week. Today I am feeling incredibly weaker and lethargic with low cognitive/brain function and concentration. My mood is so low that I cannot stop the tears from pure grief, frustration and desperation. Since cutting my dose from 150mcg T3/d to 100mcg T3/d I have felt myself degenerate quickly, and all the effort I put in to being able to do things that urgently need doing, I can no longer do. Even then it was a struggle and I would need much rest to regenerate before I could carry on. Even if it took three or four days to do something it was still an achievement as I was not lying in bed all day every day and still had the energy to bath and take care of myself, which I have been unable to do this past week. I have no motivation anymore except debilitating fatigue and pain and my future looks bleaker than ever. My brain has slowed down so much that I find it difficult expressing myself succinctly when speaking and writing, so please forgive this lengthy email. On the higher dose of T3 I had positive thoughts and honestly felt I could see the light at the end of the tunnel, but now on the lower dose I cannot do the simplest things and am in constant pain. My panic attacks and mood swings (I get so angry and frustrated I just don't know myself anymore) have increased significantly. I used to have incredible self control and patience but now find it difficult to contain myself. I was never openly emotional and now I find it almost impossible to control my emotions. My laptop was returned to me yesterday from repairs but they have still not fixed some of the faults and I have this unreasonable fear to pick up the phone to Toshiba to explain this. I would have been able to handle this a few weeks back when my levels of T3 were higher in my cells. Your letter mentions that you wanted my TSH raised to the lower level of the reference range but my TSH does not tell you how much T3 there is in my cells. I have attached a link to 's site as I do not feel well enough to find all the scientific evidence although there is some scientific references in his book which I understood that you had read… http://recoveringwitht3.com/blog/thyroid-blood-tests-part-2-test-results-patients-t3-only and http://recoveringwitht3.com/blog/thyroid-blood-tests-part-3-physiological-thyroid-hormone-replacement I also forgot to mention 's response to me regarding my 150mcg dose of T3 and the fact that I was still not 100% despite supplementing with 1 Vitafem Plus (by Simply Supplements), 300mg Co Enzyme Q10, 200mcg Magnesium, 400mcg Selenium, 10,000iu D3, 1000mg Omega Fish Oil, 1000mcg B12, 2000mg Vit C, 400mcg Folate, 15mcg Zinc with Copper and 2 Co-Strong Multi B Vitamins each day. I also requested more science to give to you which shows that when on T3 only, one's TSH would be very suppressed. 's response was such: "The book has medical research references specifically on main key points like this. There are endocrinology textbooks that are recognised as classics that even state that this will happen. Read through and the references will be obvious. One of the things you also need to consider is the necessary requirements for T3 or any thyroid hormone to have any real effect. This will also hit you in the face as you read through. The mitochondria need to be producing sufficient cellular energy for thyroid hormone to regulate cell function correctly. There are many factors involved in this but B vitamins and a sufficient supply of glucose to the cells are probably two of the most important considerations. Glucose can't enter the cells unless there is enough insulin and dietary intake of food AND sufficient cortisol to work with the insulin. The book covers all of this and documents how I managed my treatment to balance all of this. I have seen the methods work well with others. Your T3 dosage appears quite high and although it may be correct it is also possible that something else is holding you back. The book should provide ideas that you may be able to discuss with your doctor and cause you to alter your treatment slightly. If there is some missing link then you may need to consider with your doctor whether cutting the T3 to a lower level might be advisable during the process of introducing any other treatment changes." He continues to say on this research http://www.ncbi.nlm.nih.gov/pubmed/21104580 which I do not understand as my brain is so tired now. "Insulin resistance will cause less glucose to flow into the cells and thus reduce ATP generation. It will hamper thyroid hormone activity in much the same way that actual diabetes or low cortisol can. Poor diet or digestive system issues can have exactly the same impact.Low glucose in the cells and then low ATP generation will tend to limit the processing of thyroid hormone within the tissues - simply because the T3 and T4 cannot be equally matched by sufficient ATP. So, the question might be "which is the chicken and which is the egg?" Does the insulin resistance cause the thyroid dysfunction or the thyroid dysfunction cause the insulin resistance or can they both occur?So, it can be something of a vicious circle until enough of the right types of thyroid hormones are present and even then the return to full health may be a long road once many areas of metabolism have been disrupted."I understood in our consultation that you understood that the TSH would be suppressed on my current therapy but that in order to get a fT3 reading, the laboratory would automatically do a TSH. As I understand it, the pituitary recognises that there is sufficient of the active thyroid hormone T3 being secreted by the thyroid gland so has no need to send out high levels of TSH to tell the gland to secrete more, hence showing a suppressed TSH. This is why I am confused why you would want to raise my TSH irrespective that my T3 will drop further, preventing less T3 to be absorbed into my cells in order for me to function and allowing my symptoms to return. I don't know if you have ever heard of The Spoon Theory. The term 'spoonie' is used worldwide, story here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ I have mentioned this because I have no spoons left and, like many with chronic conditions, my friends of 20+ years have deserted me [actually, I had to let them go because they just didn't understand] because I was left undiagnosed for so many years and unable to explain what was wrong with me and why I could no longer attend birthdays, outings or have any visitors. The only friends I have left are in other countries who I do not communicate with much anymore as I find it draining and too difficult. I am exhausted from battling against the odds all by myself for all these years, and now, in grave financial difficulties from being ill and bedbound for so many years, plus having to fund my own medication, I no longer have the funds to feed myself nutritionally or pay the bills. My Lower Disability Benefit Allowance has been reduced and does not cover my mortgage, and this disease continues to keep me housebound and a recluse, unable to help myself, or be that active, vibrant, funny, quick witted person I once was. I have been on a plethora of vitamins and minerals which have helped enormously (and cost a fortune) but these will soon run out and I won't be able to buy any more. A thyroid friend (diagnosed by Dr Gordon Skinner but her GPs refuse to take his diagnosis on board and so she too has to self medicate) has a friend in Turkey who would be willing to get me T3 for free, but as this medication is for life, I cannot see this as an option. I honestly feel, should I not be able to get the help I need, that I may be forced to let my medication run out and let this disease take its course. The GMC condone the use of Natural Desiccated Thyroid and T3 treatment. This can be read in Dr Skinners FtP Hearing here: http://www.tpa-uk.org.uk/skinner_rev4.pdf It also states: "In your evidence before the Panel, you confirmed that to your knowledge there were no formal guidelines as to the accepted procedure for medicating those patients with thyroid deficiency. You also commented that, although you do not disregard the biochemical evidence, you do not regard blood chemistry as absolutely indicative in diagnosis, and you feel it is imperative to take into account the clinical symptoms exhibited." And… "The Panel is impressed with the reflection you have shown and your evident immersion in your specialty, and has noted your ready awareness of views opposing yours in this field. The Panel is confident that you will continue this reflection in your future clinical work." A colleague of Dr Strange (my GP of 8+years who referred to my symptoms as 'functional' even though I was visibly ill) told me that my T3 would be continued to be prescribed as an Acute medication for the rest of my life and I must request this in writing every month. Should I fail to do so in time, I will not receive my T3! I am not a child and this added stress is unnecessary and yet to fight this I need to be on sufficient T3 and have further investigations as to why I continue to stay ill and am unable to live a normal life. I have read and heard that high cortisol levels affect absorption of thyroid hormone in the cells. I doubt the results of the 24hr Urine Steroid Profiles which were done previously have changed much but if you could test me further I would be eternally grateful. I feel that long term stress on my adrenals may also have something to do with me not getting well and I would be grateful to have this investigated. The slightest pressure, stress, bad news, altercations, wrongdoings, etc endured, sends me over the edge for weeks/months and I find it difficult to recover and an extraordinary fear sets in. My body and brain seize functioning and I feel I cannot deal with people so I shut myself off. There is also the question of my gut and if there is something wrong there which is preventing my T3 from working properly. I would be grateful if you could help with getting this investigated also as my GPs will not do so unless I have a referral. I thought it important to mention, in the event that you were not aware, that when going through my emails yesterday I had received one from Dr C Lowe's wife, informing me that Dr Lowe had died suddenly on January 9, 2012 due to complications following a head injury. Here is his wife's tribute to him http://bit.ly/y3zjF0 . I was in shock and am still totally devastated as he really understood thyroid patients and was not afraid to voice what many patients are aware regarding the connection of the TSH, the pharmaceutical companies and T4 only therapy http://www.drlowe.com/ and http://www.drlowe.com/geninfo/activism.htm. He was a pioneer and more than a specialist in thyroid disease, especially his research on cellular thyroid hormone resistance, fibromyalgia and their connection. He helped many thyroid patients suffering from a difficult thyroid condition and is a great loss to all those he has helped. He helped me to understand my condition better so I was able to help myself despite incredible opposition from those who were supposed to be diagnosing me by my symptoms, instead of my laboratory results. He was one of a handful of doctors who understood that the TSH is not a 'Gold Standard' test and becomes redundant when on T3 only. Please read this. I am so tired so hope this is the right link re TSH suppression. http://www.drlowe.com/frf/t4replacement/critique2.htm#Dangers of T3 and http://www.drlowe.com/jcl/comentry/t3dangerous.htm#Reply_to_Anti-T3_Doctor Sunday, 22 January 2012 I'm no longer able to wake up at 4.15am to take my first dose, or at 9.15am since being on the lower dose of T3. I now sleep right through three alarms which are set for these times and only wake around 11.30am, and by the time I have had a cup of tea, I have no energy left to bathe, eat etc and can do little more than stay in bed. Yesterday, Saturday, I had to go the post office to send an urgent registered letter, but because I woke so late, I had to miss my tea and throw something on quickly before setting off for the bus stop. Half way there I started suffering chest pains and when reaching the bus stop, they were so bad I had to return home. The pain was more significant on the left and middle side of my chest. I have already had one stroke when on T4 and these chest pains only stopped when I was on sufficient T3. I am deeply concerned that the lack of sufficient thyroid hormone in my cells will lead to another stroke. For all of the above reasons, I have no choice but to increase my dose urgently as I cannot remain bedridden and allow myself to become increasingly debilitated. I am also deeply concerned that I will not be able to make the trip to Chelsea and Westminster Hospital (or any hospital) the longer I am on this protocol as I will be too weak to do the trip. Before I do, please would you let me know if you wish me to have a blood test done whilst I am still on the NHS 100mcg T3/d with the form you sent me? I have some extra NHS T3 which I shall use to experiment on which dose I feel best on as this is slightly weaker than the Cynomel I am used to. The extra NHS T3 I have will not last long so I would be grateful if you could let me know if you would consider increasing the dose and do further investigations suggested above, or any others, in order to get to the route of the problem of why I can only function on high doses of T3, and why I continue to remain unwell even though I feel so much better on these high doses? I would also appreciate a print out of the tests done with Dr Htay and yourself – I will pay for these if required. I can collect these when I come in for the blood test, or anytime, if it's too much trouble to have them posted to me. I look forward to hearing from you with urgency.