Some advice from anyone who's been on T3 only (or multiple autoimmune issues) - confusing problem

Hey guys, I can normally work out the next best step to take but am a little stuck as nothing particularly making much sense. really sorry for essay but a little complicated!

A quick (as possible) brief history. Ill since a child, hashis since teens and muultiple other issues (diagnosed sleep disorder similar to narcolepsy, constantly aneamic, stomach, phompholyx, etc etc etc). By early thirties, could no longer get out of bed at all and was about to start insulin for late onset type1 diabeties and my adrenal glands were failing and had brown marks everywhere etc.

Gave up gluten and pretty much everything dissappeared, diabeties completely reversed and adrenals seemed to recover, brown patches faded, stopped conking out if got stressed although not been retested recently to double check. Since been diagnosed as something same as coeliac but not coeliac as diagnostically different and they don't have a name for it - long story! Daughter also diagnosed so genetic.

I've been on T3 only thyroid replacement for nearly 15 years as can't convert T4. Was on 60 mcg per day and thyroid test always the same and stable for at least seven years. After going Gf, had to drop to 40mcg.

Always had exceptionally high heart rate even before thyroid issues (even when tsh in hundreds and nearing thyroid coma) always above 120 with low blood pressure. Went up to 140-150 in spring and couldn't get a t3 blood test at the time so dropped to 30mcg, no effect on heart rate but tsh climbed to forty something in six weeks and felt hypothyroid. went back up to 40. Treatment for severe vit d treatment two weeks later, heart went down to 70-80 - first time in life and now stable so weirdly life long fast heart rate due to lifelong vit d deficiency lol!! - who'd have guessed lol

I don't produce any T4 at all, even if tsh goes up to 40/50 or higher - still no recordable T4.

still have a few issues with b12, vit d, ameania, ferritin etc but under management. Can normally tell what is wrong with all issues mentioned above depending on symptoms

Have started having new set of symptoms I've never had before, feeling toxic immediately after taking T3, huge memory issues, high temps, weight loss, needed to urinate more frequently and was getting incredibly thirsty, no sex drive at all alongside tiredness which happens with everything lol. saw endo consultant and he agreed that I was showing clear physical signs of hyper - ultra responsive reflexes (normally the opposite), trouble getting to sleep, sweating palms and shakes which are always worse after taking t3 and we agreed to try 30 again. We were going blind as no test results at appointment but did some after appointment and results indicate the opposit and should increase dose but haven't seen him since - will do at end of december. Thought I'd continue with 30 anyway as really did feel toxic? Optician also thought my new eye issues were due to the meds as well (enlarged pupils)

Some things have got better, can sleep at a more appropriate time, strange pains I was getting in my heels and various other places that suddenly went away and don't feel toxic and a slither of sex drive returned and improved period, not so thirsty. However.... I can tell I'm becoming a little hypo again in some regards which doesn't make sense?? And on top of this... I'm really not feeling as bad as I should or would normally if this low and I don't seemto be putting on weight like I normally do when low - I did the first month but kind of stopped and gone back a little now. Plus i'm not getting the headaches I normally get when low. Although not feeling great, am strangely really coping okayish with very low levels of thyroid of any kind???

Test results before dropping to 30 were T4 - none (or unrecordable), T3 - 6.9 (3.8-6.0), tsh - 3.80 (0.35-5.0) so like I said, looked like I should really up than lower!

Something else is clearly going on and the only things I can come up with is that taking into account the feeling of tocxicity I was experiencing, maybe there are problems with taking t3 and having no T4 in system for that many years and maybe it's the t3 the problem rather than me being hyper. Maybe some parts of your body need T4??? And I really don't understand how I'm still functioning at these low levels.

Or is there something else entirely that's the problem and this is alleviated if hypo and running slow???

Obviously the memory could be caused by low b12 but this is being looked into and it's still in range - just can't get it up naturally or higher than this. It might be best to get adrenals checked again also but I'm not exactly popping up with brown patches or getting irritable or falling into coma like sleep if get angry like last time so unlikely. I'm a little aneamic although just low ferritin this time, fbc all better than usual but I am really struggling to take the iron replacement unlike before as reacting far more than usual and feeling vomity if take.

I've rechecked my sugar levels, and these are better than normal and bringing sugar levels down very quickly even after huge sugar loaded pig out.

Is there anything else someone here can come up with as I'm totally flummoxed for once or has anyone else had anything similar????

I have all the tests of pretty much everything lol so just ask if you think anything particular would help or if there's something you have an inkling of?

THank you so much if you took the time to read, jus looking for any clues to be honest :o)

56 Replies

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  • You listed "huge memory issues, high temps, weight loss, needed to urinate more frequently and was getting incredibly thirsty, no sex drive at all alongside tiredness which happens with everything lol." These are all hyper signs, confirmed by your hyper reflexes. Loss of memory is a common hyper symptom--ask anyone with Graves'! I have no short-term memory when my T3 is too high. You may find this post interesting: tiredthyroid.com/blog/2012/...

    You also asked if the body needs T4, and the answer is yes, there are T4 receptors. tiredthyroid.com/blog/2015/...

  • THanks will take a look - yes, thanks, I think you confirm what I was thinking but I just don't get it. I have no t4 in my system and haven't done for years but now i'm so low on t3, i really can't understand how I could be hyper lol. Where do I go from here, I can't convert t4, I seem to be hving problems with t3, can't afford to get ndt which may not make a bleeding difference anyway if I can't take either??? Ah - this is going to be a difficult one to solve me thinks lol!

    I'll read through and see if I can see anything to help :-)

  • You said you recently addressed a Vitamin D deficiency. Maybe you can tolerate T4 or NDT now.

    Each organ/tissue needs a different amount of T4 and/or T3. Obviously lack of T4 isn't life-threatening, or all the people on T3-only wouldn't be here. But I firmly believe they are missing something if they truly have no T4. Is their hair different? Can they perform basic math like addition and subtraction? Many on T3-only do have some T4 that they produce themselves, so very few truly have zero T4.

  • I just thought, that is actually really interesting about the math issues, as when I was near thyroid coma after being left severely low for nearly five years, it was my language that failed and forgot all my vocab which I basically had to re-learn again. Work even stopped me answering the phone as couldn't remember the word hello and I would just stutter ummmmm lol??? My maths was completely unaffected. This time it is my maths suffering but not my language lol! hmmm

  • Yes, I thought that as questioned whether nature wouldn't have just let us make t3 directly in not for a reason lol! On this basis, I decided to take a little t4 when I was pregnant in case the baby needed it for some reason so had it in the back of my mind. Most my issues have been addressed and my autoimmunity has reduced since going gluten free so it's worth trying t4 again I suppose. Attempts at correcting anything before GF failed miserably and everything was low - just had never actually tested vit d for some reason lol!!!

    My T4 results always come back as outside reference range and no amount given but I suppose I could have been producing a very small amount that is lower than recorded and then maybe now body is functioning and can actually absorb meds of any kind, maybe the t3 level is stopping this????? if that makes sense lol.

    Many thanks for the link, I'd actually come across that a few years back but didn't make a note of it and have been looking for it ever since as knew it had more info on t3 than most.

    Thanks again :-)

  • Oh and it seems to be my short term memory that is a problem, people say I've done things/ said things and I just can't remember and I'm normally one of those people who remember every second of every day going back to 1 years old! lol! yeah and my maths is definately going a little lala - I do accounting at the moment never mind higher math and it's taking me twice as long as usual so that's wondeful lol!

  • Do you have up to date results for antibodies, iron, ferritin, folate, B12, vit D? Don't accept that "in range" is necessarily optimal.

    What is your diet like? Do you eat well?

    Do you take time each day for rest and relaxation?

  • Yes, i eat pretty healthily - maybe some days, I need to increase the amount I eat but otherwise okay. Crave sugar with t3 but has reduced since lowered dose. With all the issues I have such as you mentioned, I used something called chronometer which tracks every single vitamin and trace mineral in diet just in case and it was all okay, some days a little low on foods containing iron and folate but over longer period, mostly fine. THe only thing that didn't make any sense was B12 as I get huges amounts of this in my diet and 2/3 times the amount required but still b12 levels still dropping.

    I've had a little trouble focusing my mind on one thing so can't seem to truly relax like before but not through lack of trying lol! I'm a single mum but only work three days a week and sometimes a little more from home so not too bad tbh!

    We don't accept "in range" to be acceptable but I've been worse as always struggled to keep these levels up medicated or not but I am trying to get them to go up to higher range. Some things have shown improvement.

    Last results in october were:

    In regards to iron:

    red blood count: 4.62 (3.8-5.8)

    heamoglobin concentration: 136 (120-160)

    Above two show improvement from historical tests but always drop when tsh low??)

    heamatocrit 0.41 (0.35-0.45)

    Ferritin: 14 (12-250) = on treatment at present.

    B12: 321 (130-800) - keeps dropping last two years from 417 are looking into further at next appointment anway as should be absorbing more now.

    Folate: 8.5 (4-20) - has improved without treatment was deficient before GF, 6ish a little after.

    Vit D - 51 (30-300). self medicating as haven't seen him to discuss result, will prob medicate me anyway as would prefer to be higher. previously around 30.

    Haven't had my antibodies checked since the coeliac stuff first dealt with but showed massive improvement at the time - can't remember result though as three years ago but Serum C reactive protein now measures at <1mg so mass improvements there. Was likely to get antibodies rechecked at next appointment anyway.

  • Have you been tested for pernicious anaemia?

    nhs.uk/Conditions/Anaemia-v...

    Can I ask what your diagnosis of something "similar to celiac" is?

  • No not yet, but it's only been a year and a bit since the gluten trials stopped and I've so much reversal of so many issues, I think they wanted to wait and see what happened and what was left after trying to get levels back up in other areas. It is only becoming clear now that B12 is not budging and getting worse. On the other hand - other possible indicators of pernicious aneamia are improving, heamoglobin has gone up, my blood cells that were on the larger end have become smaller and my folate has gone up unaided albeit not quite enough lol! I suppose it might still be worth doing an intrinsic factor test anyway maybe?

    In regards to my diagnosis, more is written in a post below as to what they did but basically they really don't know what to call it - they said maybe have name in two years. They were reluctant to call it Non-coeliac gluten sensitvity as this is often discussed as being non immune mediated which is definately not the case in my situation as they have proved it affects all my immune issues greatly. For instance, blood test for tsh at beggining of each gluten trial -- 1-2, after six weeks of consuming gluten - it measured between 16.85 and 36.89 and took nearly three months after going back to GF to go back to nearer 1 - this was all without medication changes as they wanted to see what happened. I literally pop up in tiny blisters all over my hands and feet within 2-3 hours of eating it although blisters were a very late symptom in the last year or so before quitting gluten, just stomach issues as a kid and so on

  • Interesting. Gluten can have such profound adverse effects on the body and yet the medical profession don't believe there's any problem beyond celiac disease.

  • Yeah I know, i did come across some research published a couple of months ago that had found something and had ssome proof of an issue other than coeliac that was immune mediated. I will try and find it again - lord knows why I didn't book mark it lol!

  • I am on T3 only meds and have similar symptoms to yourself. I only feel better when my B12 is over range and my D3 is around 150. Are you taking supplements? Also, low potassium can make you feel crummy, worth getting it checked, you should be around 4.1 to feel ok!

    Also, an adrenal stress test with saliva samples is a good one to do to check your cortisol levels.

  • My potassium hovers around 3.8-3.9 so yeah I suppose could do with being a little higher - will get some supplements and see if help.

    My adrenals were failing just before going GF but seemed to recover quite quickly after and I''ve had none of the related symptoms return so nothing to hugely indicate these, I could always ask for a test to make sure. Yeah I'm on D3 at the mo and I know these perk me up somewhat so will make sure I keep taking until hit the higher levels this time. Thank you :o)

  • I'm taking 2000i.u of D3 daily you could go higher with GP's advice!

    Your potassium is low like mine but due to mine being in range (albeit at the bottom) i can't get slow release from my GP. I supplement with Electrolyte Stamina to feel better. If your potassium is below range then GP might prescribe slow release potassium to you.

    Also, your sodium levels need to be mid range.

    Hope this helps.

  • Ps. Magnesium helps us to absorb D3 so well worth taking

  • Thanks again, I am taking some left over 3,200 Vit D3 at the mo but will get another lot in a couple of weeks and keep going until get much higher, if doesn't seem to be working, will try the magnesium although I'm pretty certain i'm getting enough in my diet.

    Sodium is at 137 (133-146) - is this mid-range enough?

  • It's certainly within range.

  • Have you changed the brand of your meds? I did some digging around about 20+ years ago and found that different brands.can be different strengths. The medication has to be prepared within tolerances, the calue +/- a mall figure but each brand does not vary itself so if you were with a brand that happened to be the lowest level acceptable and then took a different one at the top and with only taking T3 it could make an appreciable increase in your dose.

  • Thank you, In regards to my meds, they've been the same brand for years - mercurypharma. It's always been easy for me to tell if I need dose before or need to take it a little earlier/later dependent on the activities but now, I feel I need it and start slowing down but then when take a dose, it feels toxic. I also forgot to mention that I was starting to feel quite nautious every evening til I dropped my dose too. I tried everything to do with meds, I tried splitting it up into smaller doses so four/five times a dayrather than 3 but nothing has really worked. THe morning one is aways okay and never feel hyper with this one so no problem there, it seems to be tthe later doses causing issues and getting gradually worse towards the evenings

  • Well thought itcwirth a mention as not many are aware of another reason why to stick to one brand. I suppose you could have a problem with one of the fillers. A new allergy can start up at any time. Try taking an antihistamine one hour before and see if that makes a difference. If it helps could well be a filler or change in fillers. If not may be a dose problem. If no one gets to the bottom of it then report if by sending in a yellow card. Think you can pick up details about that atcthe Pharmacist though in sure putting yellow card for medicines should bring it up.

  • Okay, will keep this in mind and give it a go - what is a yellow card and where do I get one - from the pharmacy? THanks :o)

  • See the Yellow Card scheme here:

    yellowcard.mhra.gov.uk/

  • Thank you :-)

  • Hi Saggyuk,

    I have been on T3 only for 5 + years. I have no thyroid and became very toxic on T4 only. Tried both together and found that my body was only happy with no T4 at all.

    From your results it looks as if you have plenty T3 in your system but your body is still asking for more. So, logically, it seems that not all of the T3 is available for you to use. The problem you have is finding out why that is.

    I also always have plenty T3 in my system and, although I can get my TSH down low (I need it suppressed) even with FT3 over the top of the range I have never had a TSH of 0. I don't know why that is, but I suspect my autoimmune system is at fault. I have never gone gluten free because I got tested for gluten intolerance and it came back negative.

    None of this is very helpful to you except that it is good to know there are other people out there who have similar puzzles to solve.

    Maybe we go through periods where, for instance, our livers struggle to run optimally and this causes the nausea, or our brains are swollen and this causes brain fog and depression. One main problem for us T3 users is that our hearts LOVE T3 and can easily get over excited when our 'other parts' are still struggling.

    I don't believe you can overdose on vitamin D though, so if nothing else, at least you can keep that level high with supplements without worry.

    Good luck with it all.

  • Hiya, thank you, My t3 has historically been between 8-9 and for years this was stable with a tsh of 0.3 and 0.9/1.1 so it's just low for me rather than in general. I never felt toxic on t4, just didn't do anything and tsh continued to climb no matter how much I took.

    I also test negative for coeliac and gluten intolerance under traditional blood testing and endoscopy but I've completely reversed addisons and diabeties by coming off it and I instantly had to drop my t3 levels from 60 (which I had been on for 10 years) to 40. I had come across some credible medical research that had been done that suggested could be realted to gluten and I had to give it go as was going to have to give up full care of my daughter. All my other diagnosed problems cleared up too. My thyroid is too damaged I imagine and no life has been spotted yet lol and also trouble getting the vit side optimal but otherwise a completely different person- I can hold down a job and stay awake all day unlike before.

    Because of this, they put me through 4 gluten trials and measured all my blood test results before and after each one and also saw skin specialist who monitored my pomholyx and did skin biopsy's ect. It was quite clear that the source of all my autoimmunity has been caused by gluten and I react massively to gluten in all areas of my body .THey have now diagnosed me with something the same symptom wise as coeliac but diagnostically different and they don't really have a name for it. They have also diagnosed my daughter with the same. A couple of other members of my family have now also been told to quit gluten from seperate medical institutions. I did find some research published a couple of months ago that they have possibly now got more evidence for something like coeliac but different - such as proof that it involves part of the innate immune system which deals with bacteria and found some possible diagnostic and genetic markers, and possibly they found damage elsewhere in the stomach areas - If you are still feeling crappy, it's definately worth giving gluten free a shot anyway as you simply have nothing to lose! If I had listened to the doctors and their test results, I would been miserable in bed right now with my daughter living elsewhere!

    THank you though, I will try and look into why I might not be able to utilise t3, it feels toxic in my blood though, like when I've drunk to much sugary alcohol, i feel it in my veins which hurt lol!

  • The name for it is "non-celiac gluten intolerance".

  • Oh and just to state corrrectly, my t4 results was <0.1 (7-20) outside ref range

  • I'm on slow path having gone to T3 only. last time results showed hardly readable T4. This was a change so now on 25mg of Levo with T3 as endo said we'd previously been relying on some T4. ((Very slow journey. endo trying all combos to get best possible outcome on nhs. if not enough, last step is NDT which I see as being next step :-/ )

    All best, hope you get some help soon. x

  • Yes, I think I'm going to ask to try some t4 when I see him at the end of the month and see if it helps. Do the NHS ever prescribe NDT?

    Thank you :o)

  • Gosh, you've had and have a lot to deal with - all my sympathy. Fascinating about the gluten response.

    I am unable to add anything to the other posts, except that I've recently had a 23andMe DNA analysis for the health part. It has shown some complicated things about my health, that I would otherwise still be in the dark about. As you have other family members with issues, it may be worth trying? You don't need a medical person to refer you, (just order the kit online), but you may however, need a medical person to help you understand the results.

    Good luck.

    Mary

  • Hello Mary

    Yes, I have heard about them but just assumed it was a statistical probability thing and prob not really show you much as an individual as was under the impression they were still far from mapping the genome extensively. I did look online if anything related with blood type as I'm O - neg like most the woman in my family and found a few little things involving immunity that were interesting and possibly relevent but nothing truly convincing or medically probable. What kind of things did yours come up with out of curiosity, if you don't mind me asking?

    It is interesting, I am already aware that my family on both sides have autoimmunity or genetic issues - thyroid/diabeties, asthma, eczema etc on my mums side (they all could do with going GF to be honest lol) but on the plus side, they seem to also have hugely powerful immune systems when it comes to cancer, healing, bugs and illnesses ect (which I've also inherited). But my other side has some dire and horrific genetic things to be honest, It appears I've missed the worst of them fortunately but on the not so horrific side, they also have autoimmune kidney disease and such and they are definately not immune to bugs nor super healers lol!

    If I ever have money to burn, I may do out of pure curiosity but I can't see that happening any time soon lol!

    Thank you :o)

  • Mutations concerning vit D, B12 cycle and some detoxification issues. Waiting for Dr appointment to discuss fully, so can't tell you any more at present.

    Mary

  • Medicine is an experimental science. When was the last time you tried taking any T4 at all? I had problems converting for years, was on T3-only for over a year (at 0.82mcg/kg body weight). Now increasing T4, doing ok at T3+T4=10+88. My doc encouraged me to get back on T3+T4 from T3-only, because that is the "usual" way the body operates; the "normal" body likes T4. From my low (the point at which I went off gluten), it took me 9 years of trial-and-error nutritional supplementation and food changes, to get back to the point where my body seems to be functioning well.

    Sounds like you have non-celiac gluten intolerance. Which is every bit as serious as full celiac, but medicine likes to treat "celiac" and "gluten intolerance" as two separate entities.

    What is your T3 dosage pattern? I was on five 12.5mcg doses of T3 daily, while on T3-only, to avoid huge blood swings in T3/FT3. If you think you need to be on 40mcg T3, I would encourage you to do it in at least 4 doses if you are not already. I know from recent experience that having FT3 over the top of range, has symptoms you don't appreciate are there until you drop the dose sufficiently to get in-range.

    While you are on T3-only, I would not pay any attention to TSH. Just get your FT3 level when you are having a difficult time. Try to keep that FT3 between 50% and 100% up in range.

    Do you have any idea what your adrenals are doing? Proper adrenal level & rhythm is needed to utilize T3 properly. Perhaps you should have a 5-sample saliva test, which you could supplement with a 24-hour urine cortisol test.

    BTW gluten intolerance lowered my protein digestion capability, so I use free essential amino acids for a boost. You could check your total blood protein, you need at least 6.5 g/dl. I also found amino acids have a lot to do with helping my adrenals shut up at night. Taking the free amino acids is like a sleeping pill, but without side-effects.

    Are you sure you are not experiencing other autoimmunity besides Hashi's? (Did your TPO and TG antibodies go down close to zero?) If you're not sure about whether you have something else going on autoimmunity-wise, you might want to take a look at Dr. Tom O'Bryan's video on Youtube about "The Autoimmunity Fix".

  • Hi there Eddie, I've been on full dose T3 since 2004 (I think) and have only taken a little T4 when I was pregnant in 2010 just in case as didn't want to leave it to chance. I normally take them three times a day so used to be 20-20-20, then after GF, 20-10-10 and now 3x10. I always was quite stable. I did try four times but I used to have a sleep disorder (that apparently couldn't be cured!) and found the later dose exacerbated it but I no longer have a problem getting to sleep now nor waking up (at least not much lol). Since having these issues more recently, I have tried to split it to four again to see if helps but didn't seem to make a difference and made me go to bed later. Plus it's tricky getting a fourth one in when being treated for iron alongside.

    I am going to try T4 again as i feel like i'm missing something. my T3 levels were always 8-9 without symptoms but I suppose a lot would have changed now that I am more alive lol!

    Do you mean get my T3 tested when feeling high?

    I haven't had my adrenals re-tested since first GF three years ago. They were failing but I had a lot obvious symptoms and these symptoms haven't returned at all so no real reason to think this is still a problem. I could prob get the basic test done again but simply can't afford private ones at the mo.

    Not looked into protein much in past but only test I have is the serum total protein level which is 73 g/L (61-79) - is this what you mean?? Don't really understand this one so have no idea what this means tbh lol. I like the sound of natural sleeping pills ;-)

    I was obviously having other autoimmune issues before GF as was diagnosed with type 1 diabeties and adrenals etc (plus sjorgens and sleep disorder possible autoimmune etc) but these literally all cleared up/reversed when went GF. I know my thyroid antibodies had reduced dramatically but I wasn't really paying attention and don't have these to hand as was too busy jumping up and down thinking "i'm fixed" lol. I'm still multple times better than I used to be -in fact humungously better just not quite as good as first :o). I will see about gettings things retested if possible. Sugar level control is better than good? What I do know is that my serum C reactive protein used to be really high but is now <1mg so this kind of indicates real low level of inflammation. I will take a look at the video.

  • Many thanks also :-)

  • In my case, I always test FT3 when I know it's going to be high (a few hours after I take my once-daily 10mcg dose), or when I *feel* like it might be high.

    Don't know what to say about your reaction to T3. I suspect it is related to something nutritional, or the way your other hormones are behaving. Which minerals are you supplementing? I'm guessing the StopTheThyroidMadness folks would say the T3 you take is pooling.

  • You might consider an autoimmune Paleo Diet. Could be other grains, soya, or dairy complicating matters.

    You could have intestinal parasites, candida, or a bad balance of bacteria in your gut without many intestinal symptoms. The Food Intolerance Bible by Anthony Hayne has dome self quizzes and treatment options. Or a DNA stool test might be useful, preferably one that suggested treatments for problems it finds. And have SiG-A tested - lack of it compromised your microbiome and immune system.

    Vitamin D should be over 150 - UK or over 60 - US. It's a hormone needed for many biological processes. The nutrients you're low on point to a gluten/digestive issue as a start. Vitamin K2 is important with it.

    B12 should be over 800. Folate should be 50-70% of range. B6 could be low, too, causing fatigue as hemoglobin can't be made to properly carry oxygen. B2 is related to these, and it's needed for production of energy in your mitochondria. Could be just your digestion. Could be genetic. 23andme with interpretation has been quite useful to my family - we need more Bs than most people, or bad things happen as Phase 2 detox is blocked.

    So, you may indeed be toxic due to inadequate methylation which uses the Bs. A heavy metal test would help identify toxicity which can block biochemical pathways and energy production. Provoked urine is best, or given your many issues it may be most efficient to do a Genova Diagnostics NutrEval test - their website has a sample test.

    Then, it might be helpful to test for c. pneumoniae if the above doesn't help. It is notorious for running down B12... I'm currently needing 8mg a day to stave off fatigue, which is a huge amount. It's a nasty bug linked to MS. Alzheimer's, CFS, and arteriosclerosis. It invades your cells, has 3 life cycle phases and requires multiple strategies to kill off all of them and can be relatively asymptomatic and hard to text for if chronic rather than acute.

    Adrenals, sex hormones, and thyroid will all be impacted by the above. I suspect you have multiple issues, so taking them on one by one, patiently over time, is the path to health. Or you could get uterine cancer, followed by CFS, like me, due to years of simmering problems as you describe.

    Best wishes on your journey.

  • Thank you Learner1.Yeah I've kind of been putting off further dietry stuff like paleo diets and elimination diets lol.I love my food. Gluten was easy peasy and had no concerns nor problems as pizza always made me feel like crap anyway but dairy - eeek! other stuff doesn't seem to make me obviously react and I have no eczema or bad skin any more. Well I know sugar doesn't agree with me greatly but t3 makes me crave it but this has reduced since dropping my dose. And yes, I need to reduce my tea intake but it's a hard habit to break as used to be the only thing to keep me half functional if I wasn't falling asleep on or under my desk lol!

    I know the vit D helps as the more I take the more I perk up so am going to make sure I hit high numbers this time. Apart from some of the things I mentioned earlier, my dietry intake of most things like k2 was sufficient, but as you mention, I could be having additional digestive issues.

    I was malnourished for most my life as used to eat so little as was never hungry as had stomach and digestive issues since a little girl - When I GF, it was the first time I had ever experienced hunger lol! I was hoping most things would improve. My folate has increased slowly etc but I think I will spend the next two months really trying to get vit d and b12 high and if it doesn't work, I will have to start looking at what the cause of this is and rule out many of the things you mention one by one.

    I've already had everything - the list of things I've been diagnosed with is astronomical including CFS lol. All much better now so I'm positive that most things can be worked on and to be honest, just staying awake all day and being able to get to work on time is a something I could never have hoped for so I'm reasonably happy with this. Although, annoyingly, no matter how ill i've been, or how bad my results are even when I had no thyroid in my system at all before meds, nothing has ever affected my sex drive before and it's really bugging me :-/ lol!

    THanks again, I will certainly look at all your suggestions :o)

  • You're welcome!

    I wouldn't underestimate the food and gut pieces. Get the book I mentioned and work your way through it.

    RE your libido, go through your hormones with a fine tooth comb. I have the utmost respect for what each one does individually. After surgically induced menopause, I am making nothing well and take pregenenolone, progesterone, DHEA, testosterone, estriol, and hydrocortisone, in addition to T3 and T4. I find that DHEA and testosterone help the most with libido. (B6 can help orgasms, too, e.g. you won't if you're deficient.)

    Best wishes...

  • Amazing that your vitamin D solved the heartrate problem. I understand that every cell in your body needs T3 and vitamin D making them very specifically important.

    Others have mentioned T4 and there are T4 receptors but there are plenty of us on T3 only with very little thyroid gland existing but I don't know if it still produces anything.

    Are you going by your TSH thinking you need an increase? But with a FT3 of 6.9 and all the hyper symptoms, you must be overmedicated.

    You certainly have had many challenges with autoimmunity. Have you heard of LDN or thought about trying it? But your B12 issue may still be impacting everything. You didn't mention folate which can determine how well your B12 works. It should be high in range.

    It's too complicated for me but if your brain is working well, perhaps these might help. nahypothyroidism.org/deiodi...

  • Hiya Heloise

    I just assumed with a T4 level of "<0.1 outside reference range" meant I was not producing any T4 and when I have been very hypo with tsh of fifty+, this

    never changes so figured I have no function left. But these are just assumptions. I have since dropped a dose since the last test so my tsh is like to be higher now and I can feel I'm hypo but other things (the newer hyper symptoms) have got better.

    I'm also only assuming from historical blood tests where my T3 has always been 8-9 for hypo symptoms to dissappear which I had always been told that this is okay where I have no T4 but a lot has changed since going GF three years ago and TOtally GF after all the gluten trials a year and a bit ago. I had already dropped from 60 mcg of T3 (dose that stopped my tsh from climbing historically) to 40 mcg, within months of going GF. I tried dropping a dose earlier in the year to 30mcg T3 but my tsh went to 16.85 and felt awful so went back up to 40. I'm not feeling quite so bad on 30 again this time but I definately am starting to feel quite hypo too.

    I hadn't heard of LDN but I'm not as concerned about autoimmunity now where my immune system seems to have stopped but I will look at it if I continue to have problems.

    I had mentioned my folate a little further down in a another post and this is currently 8.5 which is still low but is has climbed from under range to 6.4 a year agoand now 8.5. THis has increased without any supplemets or treatment and it's going in the right direction albeit slowly lol!

    Haha, my brain's a little gone tonight but I will that info at the weekend and read up on it so thanks :o)

  • Okay so I read this and makes sense, so basically the inflammation, raised CRP and chronic aneamia would explain why I could not convert T4 previously and why I needed higher dose than normal to counteract symptoms in muscles/reflex etc so now these issues are resolved to a greater or lesser degree, that is why I am now possibly having hyper symptoms and have had to reduce dose so much and there's a good chance that I can convert now and well worth a try with the T4 - I am definately trying this at the end of the month.

    Thanks for the references :o)

  • I hope it works out, Saggy. You will take some T3 I hope. T4 alone may not work well.

  • I've been on T3 only for well over ten years and have had no T4 in my system so no worries about that. I'm becoming hypothyroid at 30mcg of t3 but showing toxicity and hyper symptoms at 40mcg so only mean to start adding t4 instead of going back up to 40mcg t3 - but thanks for the warning Heloise :o)

  • IRON RELATED (and you need all four, NOT just ferritin)

    FERRITIN: Measures your levels of storage iron, which can be chronically low in hypothyroid patients, but it’s important to see if serum iron and % saturation are also low. Because high heavy metals can also tank ferritin, which iron and % sat are good or high–that’s due to the MTHFR mutation. If the latter mutation and iron and % sat are low, that means the iron is not being broken down for use, putting us in a low iron state!

    Optimally, females shoot for 70-90 with ferritin at the minimum (Janie’s is 80 when her iron is good); men tend to be slightly above 100. But we DO NOT TREAT FERRITIN. We treat iron and % saturation, and over time, the ferritin moves up by itself.

    If your ferritin is much higher along with less than optimal iron, it can point to INFLAMMATION, patients have noticed–the latter causes iron to be thrust into storage and inflammation is common with thyroid patients for a variety of reasons. In less common cases, higher ferritin can be from liver disease, alcoholism, diabetes, asthma, or some types of cancer.

    If ferritin is high along with a high % Sat and Serum iron, you may have hemochromatosis,

    We learned that we should be off all iron for at least 12 hours before testing to see what supplementation is doing for us, but 5 days to see your true iron levels.

    NOTE: REMEMBER…patients report discovering that having high heavy metals can push their ferritin low, while their other iron labs are good or higher. That is why we learned never to go JUST by ferritin!! It’s about all four iron labs.

    SERUM IRON (also called just Iron or Total iron): Measures the small amount of your circulating iron which is bound by the transferrin. You are looking for ‘close to’ 110 for women, upper 130’s for men, based on what we’ve seen on hundreds of lab results. European or Australian lab ranges are something like this 7-27, and optimal is in the lower-to-mid 20s at the least for women and higher for men. If you are considerably higher than optimal, you could have the MTHFR mutation which will need testing and treatment. The MTHFR mutation also drives the ferritin low with normal or high iron is many of us, we’ve noted. If all four iron labs are high (serum iron, % saturation, TIBC and ferritin, you may have the genetic hemochromatosis and you can ask your doctor for testing for that.

    PERCENT % SATURATION of IRON: Measures your serum iron divided by your TIBC. Women want to be “close to” 35% (or .35 for Canadian ranges), we have discovered, and men go from 38% to 40-45%. Like all iron labs, you should be off all iron for at least 12 hours before testing to see how your supplementation is doing, or up to 5 days to see what your natural levels are. The latter may be best. NOTE: % Saturation can look falsely good or high if your TIBC is too low!!

    TIBC (Total iron binding capacity): measures whether a protein called transferrin, produced by the liver, is enough to carry iron in the blood. Used to determine anemia or low body iron. If your result is high in the range and in the absence of chronic disease, you may be anemic. With healthy amounts of iron, this test will be low in the range—about 1/4th above the bottom number in the range provided.

    OTHER

    B-12: Measures an essential vitamin, B12, which can be low in hypothyroid patients due to low stomach acid. We noticed repeatedly that an optimal B12 lab result is in the upper part of the range, such as the upper quarter at least. It is NOT optimal to simply be “in range”. For example, if your range is similar to 180-900, a healthy level appears to be 800 or higher. In the 500-800 range, you can benefit from taking B12 lozenges, specifically Methylcobalamin. The exception to the latter for some may be if they have both an MTHFR and COMT mutation–the methyl version of B12 can sometimes send out B12 levels way too high.

    It has been shown in studies that patients with labs under 350 are likely to have symptoms, which means the deficiency is very serious and has gone on for a few years undetected. Lab ranges are much too low for B12…in Japan the bottom of the range is 500. The urine test Urinary Methylmalonic Acid, also called the UMMA, can be added since it is a very sensitive detection and if high, will reveal a true B12 deficiency.

    FOLATE: Also sometimes called “folic acid”, this is a b-vitamin which can be low in hypothyroid patients. Folate is important for prenatal development, as well as your blood cell health. Folate works with B12 in the use and creation of proteins. It’s “folate” thats needed instead of “folic acid”, especially if you have MTHFR. We don’t start too high, as for some of us, it can start the methylation process too strongly. Standard range is 3-17, so optimal would be at least the top third of that, we have noted. Higher for MTHFR.

  • yes, I don't think I've ever had the other three iron tests. i suppose it would be good to get them done considering my ongoing problems with it but sometimes I think that's it's just a case that I never get any of them high enough but I certainly eat enough in my food for the most part. Same goes for B12, this one just keeps getting lower although I've never had treatment for this yet and again, I just kept thinking maybe everything will work better if I can just get them all at the right amount to begin with!

    My brains really not working tonight and I still have a lot to do but I will definately try and make more sense of all you've mentioned and look it up later but many thanks for all the info :o)

  • Sorry Saggy, I think you really need to supplement rather than wait and see if you will get into optimal ranges by food alone. I don't think any of that is going to happen. All that T3 is obviously not working for you and probably can't when everything else is off. Your body is always attempting to heal but it needs at a least a few basic elements for it to do so. Your adrenals need a lot of magnesium when under stress....also vitamin c which your body cannot make so you would need to eat tons of whatever contains it.

    Without enough folate I think your 12 just gets stored in the liver. You also need selenium and if you like brazil nuts that might help.

    Lab equipment only goes to 0.1 from my understanding but wonder how accurate that would be.

    I know it's hard when you can't get the proper medical help and in no shape to do it yourself. You've had some really good responses though.

  • Hiya, yes sorry if confused the matter, We've been waiting to see what happened for a while because of the dramatic reversal of so many diseases/issues and my body has repaired so many other things already, example my bones were really really bad but latest dexa scan shows completely healed and normal if not better for my age - and without any medication or supplements aprt from iron treatment and vit d more recently. It is only now, that that I'm left with these other things I need to sort as they are not improving regardless of diet and some people have mentioned I shouldn't until I have tests for pernicious aneamia etc but I think I want to get these all up high using supplements to give my body half a chance. I have never got them all up at the same time and think this might help?

    Ha! I gave up on the medical institution a long time ago, it is only myself that has gotten me this far. If I'd have listened to them and taken all the horrific meds they wanted me on, I think I would be dead by now! To be fair though, my endo whom I've had since the beginning has really supported me since he saw the difference in my health since I took control (and slapped a load of medical research in front of him, even if some of it was on rats lol)- he was the one who pushed for the gluten trials as gastro wern't interested anymore as tested negative for coeliac but needed a diagnosis for my daughter as she's the same as me but people refused to stop giving her gluten like her dad/school. He wrote to others and forced all the trials and tests. I also now have a GP who pretty much does whatever I ask even over the phone as trusts I am probably right - but this is why I have to be careful about what I ask for as don't want him to start questioning whether he should or not lol!

  • It's quite a journey you are on. I'm glad you have a support system and I know wanting to help your daughter must be a great motivator. It's really unfortunate that genetic modification has entered the system along with so many toxins. Lots of damage to children from vaccinations as well. I guess we all have to live in a bubble. I'm glad you have made so much progress and continue to put the puzzle pieces together.

    This man has the same values for healing and is brilliant.

    When you have time, it will be worth it. I've watched and learned from many of his videos.

  • . Ferritin (iron storage) levels must be monitored for the following reason:

    Once vitamin B12 has been administered, the increase in red cell production will increase the demand on iron

    stores and, therefore, it is important to monitor – and correct – any signs of iron deficiency.

    You need to learn as much as you can about this condition because most doctors are not forthcoming

    with information regarding PA/B12 Deficiency. You can read more on PA at the following links below:

    nhlbi.nih.gov/health/health...

    emedicine.medscape.com/arti...

    patient.co.uk/doctor/Pernic...

  • Okay, that makes sense, so basically, I f I do start getting treatment for B12, I'm likely to start using iron up more and will need to keep eye on it. As mentioned, I'm currently on treatment for iron anyway, do you think it would be best to wait until ferritin is higher before B12 treatment or do you mean, just need to make sure this is checked etc. My ferritin is only at 14 as it is.

    Ahhh so much new stuff to learn lol. I know lots about other areas but not this lol!

  • If you are treating with iron as well, I would go ahead with B12. I think the PA (pernicious anemia) site would be a good place to ask about that. There are different types of B12 and different ways of administering it. It's really important because there can be so many neurological problems without enough B12.

    This man has hundreds of videos on you tube and very smart. Here is a bit of what he does.

  • THank you,Yep will do regarding B12. all interetesting - my immune system was always very hyper, never really got ill in my life. Had whooping cough when 3yrs old but then never got ill again apart from flue once when pregnant and heal rediculously quick it actually freaks out many medical people lol. Just had all the autoimmune stuff. I have caught a few things this year surprisingly but I've been thinking that's a good thing as maybe indicates immune system maybe more "normal" now which is what I want lol! He mentions jabs but I don't think I had many of mine - probably some of the early year ones. I try eating as near nature as possible now but know I have to work on it more :o)

  • Ive taken T3 only for 14 years. What age are you? Are you menopausal? Some of your symptoms concur with menopause. It's difficult isn't it and you just want to feel well. Interestingly I eliminated dairy from my diet and am far less anxious (feel very calm). I'm already gluten free too like you. A trial of dairy free for just a month might help. I also, like you, take vitamin D supplement despite having an excellent and varied diet. Good luck and hang on in there, you will get better. You know your own body best. Collette xx

  • Hello Liverbird. Yes I have considered this but I think I'm too young ( I hope lol). I'm only 36 but then again, I have had period every 21 days for years and I know I release more than one egg each period so don't know if these factors can bring it forward as such lol! I'll keep my fingers crossed that this isn't the case! Hmm dairy would be so hard though lol - I will if all else fails, promise. Thank you Collete :o)

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