Following the private blood tests I had done last week, some of the results are in, and I hoped someone could please advise if it is worth going back to the docs with this
( he has previously refused to do these tests, saying the NHS only tests TSH and I am on levothyroxine and there is nothing else they would do for me) but as I am really ill, I paid for a number of tests through medichecks, and one set were thyroid tests - results below;
Hi, I'm sure someone more knowledgeable will come along and comment, but I think your T3 could be improved by being nearer the top of the range, and so you could have an increase in your dose, I would think, but you could do with the TSH and free T4 results to be sure. As for the antibodies, since conventional medicine can't do anything about these, they tend to ignore them. There is a lot of advice in the complementary or integrative sector about reducing antibodies, particularly with dietary changes and supplements. I've found watching the thyroid sessions introduced by Sean Croxton sean@undergroundwellness.com really helpful.
my TSH is in the normal range as is my T4, I am, and have been on, levothyroxine for 15 years now, but for the last 3 or 4 years I have been feeling really unwell, and the last year has been a disaster, leaving me in constant pain, housebound, need a wheelchair to go anywhere etc etc.
I did find an article on hashimotos encephalopathy, that I have sent to my doc, along with the test results, but historically he has been reluctant to do anything.
For example it took a lot of arguing just to get me on B12 shots, which he has now stopped, not because I got better, I did not, but because he thought that I "must be full" by now. The same surgery that thought I was fine on serum B12 of 103 so let it get to 65 before doing anything about it, and only then because we badgered him into it with info from here about the NICE guidelines etc, and he said "but surely you could not have pernicious anemia", as i did not have macrocytosis (plonker!) .
That is the level of incompetence and disinterest I grapple with, so if I do go to see him, I need an idea of what he should be doing before I go, as he has no clue and needs herding in the right direction, and just getting dressed, let alone the military action needed to get me there causes me immense pain.
I have other blood test results coming, I have paid out nearly £2,000 to do these tests (which we cannot easily afford) as I am desperate to find out what is wrong with me, and the doc is doing nothing, but waiting on yet another MRI - but no clue as to what he is looking for in that MRI.
I'm so sorry that you are having so much trouble. How awful for you! I'm sure you've thought of changing doctors. Not all of them are so ignorant. They deserve a complaint to the GMC because it sounds like outright negligence. When you have the results of these tests are,you thinking of seeing someone privately for treatment? It might be that your GP still won't take any notice. If you're low in B12 you should have ongoing treatment. Another thing that can happen If you've been hypothyroid for some time, is that your adrenals may be struggling and need support. Also I'm sure you've seen from other posts on this site, vit D deficiency is likely as is deficiency in ferritin. I wish you the best of luck In getting to the bottom of is, and most importantly getting the right kind of help. LB
I have thought about changing practice, and discussed it here on HU, but it looks like it is a difficult and dangerous route. I tried just booking an appointment to register at two surgeries, and was grilled on the phone by reception and told by one reception in no uncertain terms that there was nothing htey could do for me and none of their doctors specialised in anything and I should speak to my own surgery if I had issues ( I made the mistake of asking if any of the doctors knew anything about pernicious anemia or thyroid disorders or perhaps fibromyalgia - which I am entitled to do)
I know that someone complained for me at my surgery and I think it was either my sister or one of the nurses who saw me for my B12 injections, becuase the week after both my sis and the nurse doing my injections said I should complain to the practice manager, my doctor called me, and was suspiciously helpful.
of course, now htat has faded into a dim memory, his endocrine doctor freind on a course told my doc, who explained this to me over the phone, that my sypmtoms cannot be B12 related, and therefore it must be something else, and that was the end of the help I got.
I was taken off the lsit for fibromyalgia testing, he took me off the B12 shots, and has not chased up the request fro a second opinion for a neurologist as he promised he would do, after the one I was sent to was a comlpete waste of space who had not even read my notes.
since my doc thinks he is now off the hook for negligence he has given up on me and resigned me to the waste paper basket - if I want any help - I have to pay for it myself.
we have thought of going to a private doctor, but the blood tests have cleaned us out - to go to a private doc for consultation at the spire is upwards of £1,500 per session - it is something we simply cannot afford.
Your elevated antibodies mean you have autoimmune disease (Hashimoto's). Treatment is thyroid replacement hormone. Your GP seems to be saying Levothyroxine or lump it but NHS GPs do prescribe T3 too although it can be a battle to get it. Have you ever felt well since being prescribed Levothyroxine?
You say your TSH and FT4 are normal but the range is broad so it would really help us to help you if you would post your results with ref ranges and how much T4 you're taking. If you're under medicated this may be why you feel very ill and making sure your medication is optimised will improve your symptoms.
Gluten-free and Paleo Diet are said to be beneficial in managing Hashi's.
sorry for the delay - I am sure I have posted these onthe site somewhere but could not find them, so apologise for the format - comes stright from an excel file and I know tis site does not like that, but am too tired to faff about editing it :
I do find I have a bit of a wheat intolerance - which sucketh, as I love cakes and bread ( well did, my appetite is almost all gone, and all foods taste rank now, upside - lost 2 stone in the last couple of months - downside, it is all muscle and boobs that have gone bye-bye - boo!!)
I find my stomach cramps up and swells like a football if I give in and eat proper bread, but it is nothing life threatening, not coeleac or anything - I have never been tested, but I have never gone into proper shock from a slice of chokky cake
The dificulty of course is the number of foods that contain wheat these days, from dry roasted peanuts to rice cripies breakfast cereal.
I have bought in a number of wheat free foods - and will have a google for paleo - sounds familar, I must have seen it somewhere else, but my brain is so soupy these days ..... who knows where
(ok - now have spied my Paleo paints accross the room - obviously not edible - must google paleo and be sure to add food )
this is AFTER swapping taking my pills with food as the doc told me 15 years ago to NOW (2 months ago) taking my pills with no food, just water and 4 hours away from iron or calcium ( hence taking them at night, 4 hours after dinner - and I have gone from 150mg / day (3 x 50mg tablets) to just 100mgg / day ( 2 x 50mg tablets) - I did a TSH test a month ago and the doc reduced my amount by 1/3 due to TSH levels changing - but I do not have the results for that test - I hardly go into the surgery now my B12 injections have stopped, so never see them to ask them for a copy!
Your TSH results don't indicate under medication and your private FT3 doesn't suggest a conversion problem. I became very ill on Levothyroxine and am only recovering with the addition of T3 which I originally bought on the internet but am now prescribed. PM me if you need online sources for T3 and NDT.
Has your B12 not been tested since your injection was stopped? This is the only way your GP will tell that your full up or not. I would press for repeat B12, folate, vitaminD and ferritin blood tests. If these are deficient and low in range you will feel very ill, including experiencing pain.
If your GP won't test these, check out Blue Horizon and Genova on thyroiduk.org If you can't afford the tests you can buy injectable B12 & folate from Germany and it isn't expensive. Contact pernicious-anaemia-society.... for advice and sources. You won't overdose on B12 as excess is excreted in urine. Vitamin D, supplements via Amazon and eBay aren't expensive. I wouldn't supplement ferritin/iron without knowing what your levels are, too much is as bad as too little.
Finally, a private doctor consultation can be obtained for around £150 for the initial consultation and half that for follow up consultations I believe. eMail louise.warvill@thyroiduk.org for a list of doctors and endocrinologists.
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