Muscle fatigability

I'm just wondering if anyone else with hypothyroidism is experiencing muscle fatigability? I have been getting slowly ill over the past 10 years... the usual symptoms of crushing fatigue, brain fog, weight gain,, gut disorder, migraines etc.... but 4 weeks ago (before the fatigue made me pretty much house bound) whilst out on a walk with my partner and kids, my legs collapsed beneath me in fairly dramatic style. I've been reading up on the different types of muscle weakness, and the best description is 'fatigability' rather than muscle weakness.

The first, say, 50 steps are normal, then my leg muscles will start to feel woolly and fizzy and I know then I have a limited amount of steps before my legs collapse.

Rest helps. So, I can eat them be able to walk again as soon as a few hours later. I have started to feel marginally better after starting levo, but my middle symptoms remain the same.

My gut feeling is that it might be a 'co-condition' of some sort. Myasthenia Gravis fits the picture, apart from having no eye symptoms. I don't know if Adrenal fatigue might be causing it (undiagnosed as yet)

Any suggestions as to what the cause of this might be would be gratefully received, as its a distressing symptom and affecting our lives as a family greatly.

Thank you! Xxx

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  • Have you cut out wheat and, if poss, gluten? Have you also cut out refined sugars and carbs and colas?

    Getting your Vit D into 100-150 nmol and raising your ferritin a bit will, hopefully, provide some relief. And remember to drink water and herb tea.

  • Hey Londinium. Thanks for replying. I've never been able to tolerate wheat, so I've pretty much lead a gluten-free diet for the past 30 years. I did recently re-introduce Ryvita.... but will swap back to rice cakes again :O) I do eat carbs still - oats and rice are the only grains I can tolerate. I have been eating indian long-grain rice - coz I love it so much - but maybe I aught to bring back the brown rice again (which I also love) Oats are always whole oats.

    I've never been able to tolerate fizzy drinks at all - even water - must be the carbon - plus I'm allergic to sweeteners. So that's an easy one :O)

    Where I need to look more closely is SOYA - it is one of the mainstays of my diet - do, on the recommendation of one of our fellow forum members, I've started replacing oat or rice milk, and will try to cut down on my Tofutti cheese!

    I still need to work quite a bit on my Vit D and Ferritin levels, some way to go there, as was deficient. I'm finding it hard to get all these supplements down each day! Some make me feel very nauseous.

    Well, thank you again for taking the time to reply - I'm trying to wrtie everything down, as everyone is so helpful - it helps to build a true picture as to what is going on within my body. :O)

  • Hi,

    Soya, not good. Rice cakes, high in carbs. Wheat/gluten free, good - but try not to consume lots of other processed starches (like rice cakes) instead. You should be able to find Vit D drops to squirt onto oily/fatty food to aid absorption - e.g. avocado, nut butter, etc.

  • Thanks Londinium! hmmm - now to find a replacement for rice cakes! I have a very restricted diet due to the food sensitivities (Nuts/seeds are out), but also, as I am plant-based too.... but thanks for the pointers.... I feel re-energised! Ta :O)

  • Think we should go back to the beginning. Have you any recent bloods you can post with their ranges a d have you. Even tested for Vit D, B12, folate and ferritin? You may not be taking enough medication and if your vitamin and mineral are depleted they may not be giving your thyroid the help it needs to function well.

    So let's focus on the basics first as I may well be something relatively simple but giving you worrying and debilitating symptoms.

    A little gentle exercise is good but take it very slowly and certainly don't over do it. You need to be kind to yourself whilst hopefully improving on things.

    Medical students hear about what the thyroid does and a little on how it works but I don't think they see enough in their. clinical training years to fully understand how to treat it or are told it is easily helped by adding Levo. That's a very sweeping statement and for some of us it's not as simple as that.

  • Hey Silverfox, thank you for your interest. I am a bit desperate, as I am doing this entirely alone. I haven't included tests which were done back in 2012... but they show a setady increasing of abnormality of thyroid results (still in nhs ranges of course! frustratingly)

    Please don't feel you have to read through all this. I know it's pretty tiring trawling through tests/signs and symptoms! But I am SO grateful that you have offered to help :O)

    The only recent test my GP would agree to do was a cortisol test:

    26/01/2017:

    Serum Cortisol = 555nmol/L (AFTER 30 minute cortisol test)

    Serum Cortisol = 428 nmol/L ((BASELINE cortisol Level)

    Serum Magnesium Level = 0.8nmol (0.7 - 1)

    Serum inorganic phosphate = 1.02nmol/L (0.8 - 1.4)

    (I read that cortisol can give a false high reading when you have a Vitamin D deficiency??? (which I have - but levels coming up)

    ***I have copied in links below to the other two sets of tests. One NHS one taken November 2016. The other a Blue Horizon one taken a few weeks ago. if you paste and copy into your search bar, it aught to work (I hope:O)

    I have been ill all my adult life since I was 14 (now 53) Diagnosed with ME/FM/IBS/Food sensitivities/Migraine/depression/anxiety/PTSD after trying to offer first aid at an horrific fatal accident in my 20's.... all of which (apart from the PTSD) I am now calling into question, as I have been working as an ME specialist practitioner for 13 years, and have successfully helped sufferers to help themselves back to health.... so, I am convinced that my current situation is very different from this, after having 3 great years of health before a slow decline over past 10 years with, what I believe is Hashimoto's (despite anitbody levels being normal - which could be down to me following a strict GF/dairy-free diet on and off all my life??

    The reason why I suspect an autoimmune component, alongside the fact that 80-90% of Hypo sufferers are, is that both my children have vitiligo and I have had horrendous gut problems since I was 14.

    after watching the Thyroid Secret last night, I am beginning to compile a 'picture' - I was 45 when I got pregnant with my daughter. I was severely ill throughout (needing 16 hospital admissions due to dehydration and lack of food intake). Then needed a caesarean due to an existing heart condition) Then straight into looking after her without any family help. I had/have my partner, but he's the main bread-winner. In the programme it talked about triggers for Hashi's and adrenal exhaustion, one of them being pregnancy in older women. add that to my heart condition/Hyperemesis/surgery and high stress levels since then = desperate ill-health.

    drive.google.com/open?id=0B...

    drive.google.com/open?id=0B...

    As the sufferers in the programme say, it is like being in the wild west, a confused frontier town! I am having to do all my own research due to no GP support. tbh, I do prefer it that way. I have taken full control of my health, but it would be so much easier if I knew of a sympathetic MD. Isn't that the song we are all singing :O) Wish it was easier for all of us. Thanks so Much, once more xxx

  • I agree with the above and would definitely get the extra blood tests Vit D, B12, folate and ferritin.

    I'm not as bad as you but it does now take me a while to get over any walk or my regular 45 minute horse riding lesson on a Sunday. It can take me 3 or 4 days before my aches and pains subside - then i do another activity and back to pain again!

    I had to ask my doctor for the extra tests (especially as my thyroid tests were all good), they came back and my vit D was well below range so now on supplements for 3 months before another test. My Ferritin was just in range (low end) and B12 also low (both dire as others have said on here), although my doctor was not concerned about that! I will challenge again at my next check up.

    Hope you can get things sorted and start your recovery, it will be a battle (especially with your GP) but persevere - I am!

  • Thanks so much - a very encouraging reply! Yes, it takes stamina and determination doesn't it!!! I've decided to go it alone, as even if I try to find a different GP, I feel they will still be confined by NHS 'rules'. and tbh I'm fed up with 'em! I've had long-term illness of 39 years (the hypo Sxs starting about 10 years ago)

    I'm sorry to hear that your Vit D and ferritin so low - I wish you, well a recovery - was going to say a speedy recovery but I understand, like you say, that it can take a bit of a while to get the levels up again :O) But let's hope you start to feel the benefit soon :O)

    But yes, keep ploughing on! The best over-all advice from the Thyroid Secret Programmes is to take responsibility for your own health - take control. I've always felt that's important - but never thought I'd be thrown into such a maelstrom of information (and mis-information) re the humble Thyroid and treatment approaches! It's like a full-time job doing all the necessary research!

    Take Care, look after yourself, sending lots of love xxx

  • I have Graves' disease so I'm not Hypo ... but many of us experience the same symptoms .. as soon as I'd taken Carbimazole to stop my immune system attacking my thyroid .. I started on a regime of supplementing with vitamins and minerals as I was still suffering pain in joints and muscles ...

    Please google these supplements to make sure that you know how they work and see if you could benefit from them

    Of course it would be ideal to know if you have deficiencies in them first ..

    Google .. for example ..

    Magnesium deficiency / Thyroid disease ...

    You will know if you have the symptoms..

    I took

    Potassium ..... a deficiency can cause awful neuropathy

    Magnesium

    B12

    B1

    B Complex

    D3

    Selenium

    Zinc and

    Copper

    Acidophilus 40 billion

    And ... a few others ..

    They have all helped me become Euthyroid ... and I'm hoping I can stay that was with my supplementing ... as I was offered Nothing from the NHS .

    Good Luck

    Luv mx🌹

  • Hey Madge, that's so helpful. I got into supplementing again last September after getting advice from a nutritionist. I have since added others which I have read are beneficial for Thyroid problems. I hadn't realised Potassium levels can go down when you're on thyroid meds, so I've just bought that. I need to get some Selenium and some copper, but have the rest.

    I tried to start on Pre and Pro-biotics a few months ago, but had a terrible reaction and felt really ill (stomach/gut pain) for a few days following. I'm confused by that, as I was expecting the opposite response. I might need to re-visit that?

    If you don't mind, would you tell me more about your journey from medication to supplementing alone (if that's what you do). I was just talking to my partner, about a plan of action, as I would like to try a more Functional Medicine approach, and look at how I can adjust life-style and supplementation etc.... but I started Levo about 4 weeks ago, and I was thinking maybe I aught to carry on until my levels stabilise at the same time as supplementing with vits/mins until I can start to wean off the levo. Just wondered, although I realise you have Graves, how you did it.

    Thanks again for replying. I'm sorry you are a fellow 'go-it aloner' :0( criminal really.... och, don't get me started. feel so angry though about the thousands who are suffering needlessly. I hope life is ok for you just now? Sending all my love xxx

  • Is your thyroid condition Auto Immune? i.e Hashimotos?

  • I've not clarified that yet. My feeling is it is Hashi's.... what was comforting was hearing that 40-50% of hypo sufferers with low antibody results DO actually have Hashi's, so I am taking that and running with it, as it will help me treat my terrible food intolerances too.

    Am I right in thinking that if my children have an autoimmune disorder, then It means they inherited that from me/means that I have that propensity too?

    Thanks so much for taking the time to reply Riannabri!! Hope your day is going well :O)

  • I have hashi's TgAb's in 1000's over the years got so disabled and had no idea what was wrong, last Monday it was confirmed I have the Big 3 which is Lupus/Sjrogens, Hughes thats is running along my hashis - I went to the London Bridge Lupus Centre and saw Prof Hughes and Dr Lanham - It now explains why I am so unwell

  • Oh Riannabri! I am so sorry to hear that. That must be a lot to take in all at once. I'm glad that you found someone to diagnose the problems, but SO sorry it took so long!

    When you feel up to it, I'd be interested in hearing what your symptoms are for Lupus and Sjrogens, and how many years you had these symptoms. It must have been a really confused picture for you... must still feel that way. Have they given you a treatment plan yet.

    I wish you all the very best, and send all my love.... thanks again for replying, especially given how ill you must be feeling right now. xxx

  • You may be on too low a dose of thyroid hormones. I suggest a new blood test and ask for a Full Thyroid Function test as, after ten years, I think it is warrented. However some labs don't know all that is requested if the TSH is 'in range;.

    Ask for TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Also B12, Vit D, iron, ferritin and folate as we can be deficient which also causes syptoms.

    The test should be the very earliest possible, fasting (you can drink water) and allow 24 hour gap between last dose of thyroid hormones (levothyroxine) and the test and take afterwards.

    Get a print-out of your results from the surgery with the ranges (these are important) and put on a new post for comments.

    This is from a past post and I believe that you may not have sufficient T3 being converted and it is T3 that is the Active hormone which is needed in all of the receptor cells. Levo is T4 only and it's job is to convert to T3 so we need an optimum of levothyroxine, not just a dose to be 'in range'.

    healthunlocked.com/thyroidu...

    If you prefer you can have a private blood test and I'll give you links. Most are home tests:-

    thyroiduk.org.uk/tuk/index....

    thyroiduk.org.uk/tuk/testin...

  • Thanks Shaws. Helpful as always :O) I've just put up my test results, so they're in a reply to SilverFox.

    I have onlyjust gone up to 50mcg of Levo a week ago. But my question is this: Should I also be taking a low does of T3, as this is where my problems seem to be. BH flagged up problems with T3/RT3. I'm nervous of self-medicating with T3, after hearing of the side-effects on The Thyroid Secret. I know you cannot offer me guidance on self-medicating, but what dose to most people introduce when they're on Levothyroxine?

    Is it possible that my T3/RT3 will self correct on Levo alone?

    Sorry, I feel so aware I've got a load of questions... just hope it's not too much. Don't want to put people out too much! :O)

    Thanks again Shaws xxx

  • I don't know about the Thyroid Secret but I can vouch for T3 and that's because I'm fit and well on it.

    50mcg of T4 will not give you much T3 at all. Normal doses of NDT used to be around 200 to 400mcg.

    RT3 is a normal phenomenom I believe when we take T4

    Excerpt:

    Conversion of T4 to T3 and Reverse-T3: A Summary

    The thyroid gland secretes mostly T4 and very little T3. Most of the T3 that drives cell metabolism is produced by action of the enzyme named 5'-deiodinase, which converts T4 to T3. (We pronounce the "5'-" as "five-prime.") Without this conversion of T4 to T3, cells have too little T3 to maintain normal metabolism; metabolism then slows down. T3, therefore, is the metabolically active thyroid hormone. For the most part, T4 is metabolically inactive. T4 "drives" metabolism only after the deiodinase enzyme converts it to T3.

    Another enzyme called 5-deiodinase continually converts some T4 to reverse-T3. Reverse-T3 does not stimulate metabolism. It is produced as a way to help clear some T4 from the body.

    web.archive.org/web/2010103...

    50mcg of T4 is so low I doubt you'd feel much of an improvement yet. I'd increase your dose about every six weeks until your symptoms resolve. If they don't then you can think about adding T3. (Remember I'm not medically qualified).

  • omg Shaws..Thank you SO much! That has just saved me many hours of research and deliberation. Really good to understand more fully what's going on!

    You've also confirmed my proposed plan of action, which was to keep on with Levo for a while yet - see if symptoms improve. Thank you. You cannot know what a help you have been since I joined the forum. A voice of reason and calm. Thanks :O)

  • meant to say - I had my RT3 levels taken before embarking on Levo. Not sure if unusual for levels to be high without meds? xxx

  • Hi Chilean-6

    Your post stood out to me because that was exactly one of my many horrid symptoms of Hypothroidism. I went to my GP so many times approximately 9 times in one year saying my legs just didn't want to work. It was as if I had lead weights strapped around my legs. I was literally dragging my self around. In the morning it was such an effort to get out of bed and get my legs to work. I play golf and struggled to walk around the course. I even had to stop playing 18 holes and could only manage 5 or 6 holes. I was struggling to keep up with my husband on an easy short walk. I would sleep 3/4 hours every day, in the afternoon. I was taking 175mcg of Levothyroxinea day. I was finally given an appointment with my local hospital (I think my GP got fed up with me keep moaning to her and my levels not being right). The Endocrinologist prescribed Liothyronine a T3 treatment. It has made a huge difference to my health. Its a long process to get the balance right. At the moment I am on 25mcg of levothyroxine (T4) a day along with 40mcg of Liothyronine (T3) a day. I have been on this combination for a year and still I think need a little bit more fine tunning. All the advice on this forum helped me educate myself about Hypothroidism and what to ask for from my GP.

    I wish you lots of luck 🌹 Don't give up. Keep going to your GP and letting them know that you are still not well. If possible take your husband with you I did, it really made a difference.

  • Hi Reschy, Oh my! You have been through it! I can't believe your Doctor took so long to recognise that you needed T3!!!!!! Arrrrrgh. It's bad enough that you had to put up with such debilitating symptoms, but then to have an incompetent doctor as well!! So sorry you struggled with your muscle weakness for so long.

    What you've written is of great interest to me, I've been researching the possibility of taking T3 (blood tests showed this as a problem area). Wasn't sure whether to wait to see if Levo works on its own without taking T3.... but I'm now wondering, from what you've said and the research I've done so far, if muscle weakness and/or fatigability is a particular manifestation of T3/RT3 irregularities? I am keen to get my legs working again, as life is doubly restrictive (Fatigue and Muscle fatigability). Did you have any side effects taking T3?

    Thank you for your help! and yes, If I do decide to give my GP one more chance, I'll take my partner with me (Not that it helped much last time unfortunately.... but at least I feel supported and she sees the impact this is having on the family)

    Sending much love xxx

  • Hi Cuileann-6

    Thank you for your reply. My Endo introduced the T3 medication at a very low dose to start with, along with follow up appointments including blood test to check my levels. An increase was made but only a low increase. I did have an increase in my T3 medication but was a little overdosed. I had an irregular heart beat and a thumping heart during this time too. I also lost weight. With a slight decrease in meds the irregular heart beat and thumping went and my heart rhythm returned to normal. I was informed that introducing T3 would be a very slow process to get the correct level. I split the dose of both meds through out the day. I take one 20mcg tablet of T3 in the morning. I take my 25mcg of Levo at midday and a further 20mcg of T3 in mid afternoon. Having the meds spaced out during the day works best for me. Hope this has helped.

    Take care xx

  • Very helpful, thank you! Just at that point of deciding whether to go down the combi route or stay on levo for a while longer. Thanks again..... super uber helpful!

  • I was diagnosed with FM, but don't ache or suffer such fatigue since self-medicating with THs.

    Shaws has posted frequent links to Dr Lowe's website, that I've found useful. He used T3 to treat FM. It worked for me with respect to the extreme fatigue & flu-like aches, though I'm still a wreck from physical trauma.

    I've also found supplementing with sublingual B12 to help. I was low, despite a high intake from food.

  • Thanks so much Leverette! I will certainly take a look at Dr Lowe's website! I am desperate to find a practitioner able to get the right balance and dose of Levo and T3 (should I decide to give it a go) Was it he who helped you with your dosage? or cold you recommend a doctor/practitioner who is knowledgeable in this area? I might put that up as a general question, as I really feel I'm at the point where I need some input.

    I'm glad you had success treating your FM.That's good news, However, it still sounds like you are struggling. I hope things improve for you, and that you are getting plenty of support. All my love xxx

  • You're welcome!

    I self-medicate, so the information helped indirectly. I picked up a lot from reading posts & links from here. There is information on the TUK website, & articles Dr Lowe's written linking FM to undiagnosed hypothyroidism. The American NAH is also very informative, as are the thyroid blogs you could sign up to.

    Before taking any THs I did the Barnes basal body temperature test as part of confirming my symptoms were caused by secondary hypothyroidism, & topped up my nutrients. I then started with 1/4 grain of NDT & increased fortnightly till I felt better, & added T3 after about a year, also slowly. I use a return of "FM" symptoms to judge whether I'm undermedicated. Things have improved a lot with regard to my hormones. The other stuff's not related, but thanks!

    Hope you can find enough information on here to help you get better, too!

    Mel x

  • When I am due to have my B12 jab, I tend to get achy joints and muscles. Sometimes, in my arms, I feel that my arms will not support anything I lift and are quite stiff and almost have a mind of their own. A bit like the feeling you get when you sleep in a draft lol.

    If you haven't already, I would ask them to check your ferritin levels and vitamin d levels. Just to make sure you are not deficient - B12, anaemia and vitamin D deficiency go hand in hand sometimes with thyroid conditions and have similar symptoms. Also have a your thyroid checked too.

    Take care :)

  • Hey JOLLYDOLLY :O) it's helpful to know what your B12def symptoms are. I think there is a B12 def component, but I have been self injecting for 5 months and symptoms have worsened. I am deficient in Vit D and Ferritin, so I have a ways to go yet. I'm just eager to treat the muscle fatigue.... as I am starting to feel a little better on Levo fatigue-wise, but my legs are still giving me problems. Patience, is required, I guess!!! V.Difficult!

    All the best to you, sending you lots of love xxx

  • Yes I used to go for a walk and had to keep stopping & sit down, my legs felt like they had turned to jelly. Now I can walk for hours, although I do struggle up inclines (still overweight), I have sorted my vitamins and trying to optimise thyroid medication.

    All good suggestions above - post your last thyroid test results along with vitamin D, B12 & folate, ferritin/iron, for folk to help. J :D

  • Thanks J!Yes, everyone is so helpful. I don't know how I coped before I was sent this way!! I'd probably be totally insane by now!

    Take Care, lots of love xxx

  • Yes!!!! I have Hashimotos (untreated) and I get this in my upper thighs, and upper arms, not many have described it as "fizzing" , but I have asked this, and I was surprised to find someone who says the same

  • That's interesting to know, thanks. Hope you're doing ok at the moment. Sending love xxx

  • Low B12 might be the answer. When mine was undiagnosed I was getting weaker and weaker, my balance was off, and I got pins and needles, numbness, and found my thought processes were becoming very foggy. I never actually collapsed, but felt I could have done.

  • Thanks for replying Mariliz, it's really funny you should say that coz my balance is not great either....I can just veer off to the side really quickly, yet, I don't feel dizzy, my knees haven't given way or anything. I get Vertigo with migraine,is but that feels totally different - like being on a boat on the sea.... this happens so fast, then I self correct just as quickly.

    I have just talked to someone who said that her B12 deficiency symptoms didn't start to improve until she changed from Methyl to Hydroxy!! I know! so strange. She is very qualified in this area too as a practitioner, so that was very interesting to me, as I have been using Methyl, I've switched to Hydroxy and I'm hoping this, alongside treating the other deficiencies and thyroid, will bring my body into harmony.

    Thanks again for taking the time to reply. Take Care of yourself xxx

  • I kept hitting door frames or bumping into the wall when visiting the bathroom at night! Hope you get your issues sorted? Xx

  • oh dear..... sounds familiar though.I've not gone careering into anything yet, as I seem to 'auto-correct'!!!! ha ha - my 9 year old finds it funny! not in an unkind way though :O) she keeps me sane - great sens of humour lol

    thanks for your kindness Mariliz xxx

  • I also think fizzing is a good description. I get the feeling in my head most frequently.

    I think what you're describing is basically what I'd call fatigue, although it may be slightly different. I find that I can do most small activities once if I want to, but will then be more weak and probably not able to do it again, and if it was something large maybe not be able to do anything else for days or weeks. Usually the onset of the fatigue is not immediate. So as you're saying, you can manage the first 50 steps, but then the tiredness starts to set in.

    It's been very rare for me that I get an actual collapse, but I think I am pushing myself far less than you. If I have just one knee collapse a tiny bit, I'll immediately start to rest. I find that rest does help. For example if a friend visits and does all my meals, I will find I have more energy than I'm used to. The way I manage my life is to spend many days in bed in exchange for a few days of doing more. I believe others do it differently and push themselves more, at the risk of big crashes.

  • Yeah, fizzing is a strange sensation! it can be quite alarming can't it. Are you on o treatment yourself? I hope you have found something which is helping you. It's so debilitating.

    Take Care, sending love xxx

  • Yes, I'm on treatment and now self treat. I'm a long way from being well, but a lot better than when I started four years ago.

    It can take a long time to get thyroid replacement tailored to you. I think if your completely lucky and everything works perfectly first time it couls be a few months. But a year is more likely, and if you start to find more complex things wrong it can be ongoing, and it more like a case of fixing one thing and getting a step of improvement, then on to the next thing.

    I do think it's worth persevering with Levothyroxine, as if you can make it work for you you'll have the easiest life, it's completely supported by the NHS, but the others aren't so you'll have to constantly fight or self-medicate.

  • thanks.... I shall persevere! Sorry it took you 4 years though. Like you say, it's a bit like treating one thing only for another symptom to be uncovered. It only struck me this morning this morning that I already have a diagnoses of 'Dry Eyes' from my opthalmologist, and have just lost a tooth after a failed bridge. Both things, as you'll know may suggest Sjogren's. Will need to test more I guess. I feel only when I have proof in the form of definitive tests will I approach my GP again. But I am totally prepared to do this on my own.

    Thanks again Silveravocado! Here's wishing you the best of health, Love xxx

  • I think low T3 could be a possible cause of your problem. The other option is anaemia - there are several different kinds depending on what is deficient, and you can have more than one kind at the same time. Low nutrients generally could also be a factor.

    In order to find out how to improve your health you really need a set of test results for nutrients and thyroid.

  • Thanks Humanbean! That's helpful. My T3 ratio is low 11.22 (>15) and my RT3 is high 25.0 (10-24)

    I am still not sure what T3 ratio means - so much reading! and also trying to research if I aught to be introducing T3 too. So what U said confirms what I've read so far about the symptom side of things.

    Thank you! :O)

  • I am still not sure what T3 ratio means

    I think it means that you have too little Free T3 and/or too much Reverse T3.

    I had this problem as well, a few years ago. My FT3/rT3 ratio was about 8. I took T3-only to eliminate my Reverse T3. I have tried NDT since then, also NDT + T3, and T3-only again.

    T3-only is my preferred treatment.

  • Interesting... hmmmm. Food for thought there. What dose of T3 did/do you take? (if I may ask that question - but don't worry I will be getting medical advice before embarking on any changes)

    Also, what brand do you take? Do you buy privately? where from? sorry - lots of questions! Im in two minds, you see..... on the one hand, I could continue, as I had planned to continue on levo and see what happens, but I also have this nagging gut feeling that my T3/RT3 is to blame for of my symptom most of my symptoms.

    Will need to consider this. Because, although I am patient by nature (most of the time!) I have also spent my whole adult life ill, with one thing or another (10 years of which were in a wheelchair). so, I don't feel I want to spend months, maybe a year to find that I have not responded well to T4 alone.

    Well, thank you for your invaluable input Humanbean - you're an absolute star!!!! :O)

  • I was extremely ill when I took T3-only for the first time. I was also a total novice at everything to do with the thyroid.

    I think you might find this link more informative than me :

    rt3-adrenals.org/reverse_t3...

    or this website, which is old and ugly, and not updated any more as far as I know, but still has some useful information in it.

    thyroidrt3.com/

  • Thanks Humanbean, I shall look into both of those links. it'll help me decide my next move. you've been so helpful. thanks :O)

  • I KNOW high cortisol causes muscle wasting thus weakness etc.....are you taking any kind of disgested aid supplements to address digestion so your body will break down the food and you will absorb the vitamins nutrients from food....that is important........but with digestive issues it means low in all kinds of other things too like iron, d3, b12, b complex needed to take with b12, and omega 3s..common to have low stomach acid with thyroid issues....which causes the lack of digestion and lack of nutrient......I don't have time to read all the post but staying away from all sugar and eating whole foods helps with cortisol, and taking lots o vitamin c like c ester and making sure you get all your b vitamins, address digestion and move a little as much as you can but notover doing it which is bad for cortisol,....bec If not addressed...then that can turn into other problems from lack of nutrients and muscle wasting...

  • Wow, thanks jacrjacr. That's so kind - something to bear in mind. I guess it all starts with the gut, and I know I have terrible absorbtion issues there. Difficult to know what to do first. I shall digest (Ha) what you have written, Lots in there. Thank You. :O)

  • don't feel alone..i didn't take it seriously either and didn't connect the dots for a while and saw myself muscle wasting and weakness that came on over a period of a few years and then I realized....constaptated a lot = bad digestion, tested for cortisol by saliva 4 times a day and it was elevated, and realized I was low in other things as a result also so energy etc down the tubes.....so I now have several digestive supplements...some hci with pepsin with enzymes for meals with protein, some enzymes for non protein meals, take vitamin c 1000 two to 3 times a day, b12 2500 a day the meth form that dissolves under the tongue, b complex, d3 with k2 5000 daily, omega 3 fish oil, flaxseed oil, q10 two times a day the water solutible kind, green powder organic drinks to help get more nutrition in body, iron glunate for low normal ferritin 2-3 times a week, also can take braggs apple cidar vinegar 2 tbsp. with a little water and drink with a straw b4 meals to help with digestion, take a real lemon and squeeze into a cup of water and drink first thing in the mornings, make myself eat breakfast daily, and make sure you get photophenyols in your diet like berries etc or a supplement...avoid like the plague-soy, wheatgrass, and gogi berries...bec they are not good for you....long story documentary from a dr....and get out in the sunshine daily if possible....

    this is after several drs and lots of reading and realizing I had to do something major....bec energy kept going downhill.....have been on this 6mths and still trying to get it all under control....

    learning to not sweat the small stuff, and let things go and concentrate on the important things in the life we have control over, and let the rest go...

  • thanks.... I'm sorry you're having to go through such an arduous ordeal. But so helpful to know what you are taking in the way of supplements. Some suggestions I have not tried yet. I need to get more organised with the supplement taking... Knowing what is best taken with what - so your reply was so helpful. I particularly like the vinegar and the lemon suggestion. I've just bought some cider vinegar co-incidentally.

    Thank you for sharing your hard-won advice. So very generous of you! I hope your path becomes easier. Take Care and thanks again. Sweet Dreams :O)

  • There are some really great suggestions in the replies, but this is just a shot in the dark, but are you on statins??

    They can cause terrible muscle issues.

  • Hi Bob1Kat..... nope, not on statins - but I appreciate you asking me - any help gratefully received..... it's like trying to do a very complex jigsaw isn't it!? Thanks again :O)

  • Just thought I'd add an uo-date to this post of mine from 2 months ago. I found an explanation for the muscle fatigue/weakness. I got very ill shortly after this post. Seen the neurology team at Western General, and have a provisional diagnosis of Functional Neurological Disorder. Thought it might be helpful for others who may have similar symptoms. There is a website written by Dr Stone: neurosymptoms.org

    x x x

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