This is my worst thing which won’t go away. It feels like someone has wrapped great big heavy fish around my legs with cling film (this is the best description I have, sorry 🤔). I sometimes have to really focus to get one foot in front of another as my legs are so heavy 😖 And sometimes when I’m done walking I feel like I’m just going to face plant the ground. Weak, dizzy, nauseous 🤢. I walk 2 hours a day (manic dog) an hour morning and an hour evening and it’s getting to be a burden (it used to be a stress buster and enjoyment). I can’t stop (manic dog).
Anyone else had fish legs and did they go??? And why are they even like this?
Ps...6 weeks on 75 Levo - blood test this coming Monday.
Just looking for some words of hope really I think please?
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Hi SlowDragon Thank you for your response. I'm really hoping the GP properly listens this next time. Blood tests done this morning (both NHS and private) with no Levo for 24 hours and fasting. GP appointment next Monday to discuss the results. She said last time that she would be 'reluctant' to up my dose from 75 to 100 as this is 'such a big jump'. Not quite sure why that's more of a jump than from 50 to 75. Sometimes I'm not sure if I am consulting with her or her ego, so I'm prepping with a list of symptoms in readiness. I'm also prepping with a list of questions...such as what are her thoughts about T3 medication and whether or not she supports patients who consult privately... I'm hoping these might be problematic for her! I am on a mix of 50 Teva and 25 Wockhardt at the moment. I was too scared last time to bring up any issue of brands, but also not sure if this is an issue for me. I'm really struggling to understand how I can experience worsening symptoms after 6 months of treatment - worse than even before I was diagnosed?
Frequently necessary to see thyroid specialist endocrinologist to get dose increased high enough
Suggest you print out guidelines on dose by weight in readiness to push for next dose increase
But see what results are like first
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
The positive is there are wonderful people on the site who all connect and help us.. I feel for you. Just taken my blood pressure from advice its up. I came when I was just sat on the sofa stood up to put clothes away and yes same as you. Hope you soon feel better. x
That's good to know because my legs are still a huge problem for me after all this time and now on 25 T3 as well as 125T4. T4 has never helped and so far the T3 isn't either! I get scared about my legs. Wondering if I will end up unable to walk.
I admit that it brings me low. But I don't understand the fish reference. Mine hurt a lot, feel like lead and are hard to drag around without exhaustion.
Sorry - it feels like large wet wobbly fish have been stuck to my legs (which used to have muscle tone!) and now I no longer recognise my legs either to look at or to move... gah!
Ah I see. Mine are like solid blocks. Heavy as lead, hard to move, liable to trip up on nothing and feel rock solid. It's horrible. Not that long ago I had great legs from lots of cycling and hooping plus swimming. I don't recognise these useless things either.
I have a picture from 18 months ago of me hiking in short shorts. It’s definitely a ‘good legs’ pic - muscle and tone. I wouldn’t go out on shorts now. Are you still trying to exercise? I keep thinking that maybe when the gym and pool opens I will go back and build more strength but then I realise that 2 hours walking (hills and everything) *should* result in tone and muscle, so not even sure now that the gym will help? And that’s if I can even move my legs enough anyway... like you they feel so heavy to move. How long have you been on T3?
Hi, no I don't exercise. If I try, even a short walk, I'm exhausted really quickly, my heart rate (controlled with beta blocker because of atrial fibrillation) gets much higher if I am exhausted, and my legs and feet will be agonising for a day or more. I run my own business, and there are quite a few physical elements to it, lifting and moving heavy stock around, I have to conserve everything I can to manage that. It's been extremely busy since Christmas, which has made me want to cry. I used to love my life. Now it's just exhausting and closed down. Lockdown has made no difference to me, I don't do anything or go anywhere but to work anyway.
I started T3 in November. It's a rough ride. It drastically lowered my T4 and is taking it's time raising itself. It has reduced my TSH a bit though, as part of my issues has been a TSH reluctant to reduce by much, even with T4 over range. My last test results in February gave me:
TSH - 1.76 (0.27 - 4.2)
FT4 - 16.3 (12 - 22) = 43%
FT3 - 4.63 (3.1 - 6.8) = 41.35%
Based on those I kept my Levo at 125mcg and increased my T3 by 5mcg to 25mcg a day. Over the following couple of weeks I developed intense soreness/pain in my hands and arms and shoulders and back of neck. I could no longer pick things up from the floor with my left hand! It hurt too much and I had no strength. So this weekend I increased my Levo to 150mcg. I know we are supposed to do one thing at a time but I gave the T3 a couple of weeks on it's own first. I couldn't loose the strength in my hands. And although I feel really tired, sleepy tired which is unusual for me, at the moment, that pain has subsided already and I can grip and lift with my left hand again. So god knows what that was all about! Now I have to wait the 6 weeks and retest, which is about right as I have an endo appointment a few weeks later and so need to get a raft of test results done and sent to him in advance of that.
I don't understand why nothing makes me feel better. But I'm also juggling HRT and I think that has dropped low again too. Review of that tomorrow!
Well it's really good to hear that it can get better SlowDragon ! Thank you! I think that's what I need to hear, because I can't imagine this going on for the rest of my life. Did it get better on just Levo?
Aww 🥰 feel for you with the legs I’ve not experienced that but I do experience the blood sugar drops - not nice!!
I believe we are similar in that we are increasing dose from 50mcg, as I’ve been on this dose such a long time I wasn’t comfortable jumping to 75 so I increased by 12.5, I’ve had bloods today and then will speak to Endo and no doubt go to 75. After being on Levo so long I’m happy to take the slow road for slow improvements, I guess I’m nervous of going jittery with a 25mcg increase!
2 hours walking per day is so great though and hopefully your results will highlight an area you can tweak and get your legs comfortable very soon, 🤞
So much amazing support on here so you are not alone, feet up and rest evenings may help a little xx
Has your GP investigated the blood sugar problems you have? If not he needs to I am diabetic and know only too well the problem of blood sugar levels dropping too low. Perhaps you need to ensure they have been checking HbA1c , in addition you need to tell them this happens to you. Take care
I had 'heavy legs' in early days - improved with getting dosing increased. At that stage I couldn't walk to the end of the road and back (about 100 yards each way). Hopefully yours will improve as you raise your dose. Can you reduce your 2 hours walking a day or find someone else to help with that?
Hi @Anthea55 thank you for your words of hope! Today was a really miserable snails crawl. I'm hoping GP will listen as a symptom and agree a dose increase. I have a very good friend who is a dog walker and we have recently agreed she take Clive (manic dog) one day a week for me so I can just work and not fit in walks beginning and end of the day. Really helps (but I feel a bit guilty and a bit of a failure at the same time but I'm working on that)
Don't 'feel a bit guilty and a bit of a failure'. Just be glad that you have good friends. Friends are pleased to help and you can help her another time when you are feeling better.Hope your chat to doctor was helpful.
I have noticed a fair amount of info on ear problems with thyroid. Just made me wonder as you wrote ‘Weak, dizzy, nauseous’. Wonder if anyone has experienced any thing? I suffer nausea and defo have ear issue in my right ear. 🤷♀️ Thought I’d mention it as your symptoms sound very much like vertigo sort of thing which also seems common. Fingers crossed you manage to increase your levo and that helps. Really hope you feel better soon. x.
Hi Yeswithasmile Funny you mention the ear thing. Last summer, before I was diagnosed, I actually became worried I was losing my hearing...I was putting the TV volume up and couldn't hear in crowded rooms. That went away quite quickly after being put on Levo...think it might be a hypo thing? I did some research and 'overproduction of ear wax' is a symptom...have you had your ears checked?
Yes. Mine are fine. Nothing they can see. It’s not a hearing thing it is a constant itch. Like a gnat bite. There’s nothing there though so I’m just loopy 🙄. In your case though I have read research on menieres and auto immune ear probs. It might be worth you getting it checked. You do have a blood test this week though so maybe they’ll raise your levo? It’s such a shame it all takes so long isn’t it?! I so wish it were a case of one size fits all! Fingers crossed you are feeling a bit better this week x.
I had very weak legs. As time went by I just got worse and worse. I was on 75mcg Levothyroxine which on my bloods took me to the top of the T4 range so I was on correct amount of Levothyroxine. My TSH was abnormal. My T3 was never checked by my GP back then. I was given an increase with Levothyroxine to 100mcg a day even though it was already at the highest point needed on 75mcg. I didn’t know or realise this at the time. Within a few weeks on 100mcg I collapsed and have face planted the ground many times or slid down walls. I didn’t faint I just couldn’t get off the floor. This happened several times. I couldn’t hold a knife and fork at one point. I was admitted to hospital where they found my cortisol to be very low. I was given a synacthen test but that came back ok. They just sent me home without a diagnosis. I still continued to have the weak legs but now my arms and rest of my body also effected. I couldn’t walk to the end of my short road or down my garden. I was in a mess and could only lay flat for months. GP had no clue what was wrong with me and offered no help. I found this forum and was advised to go private. I was scared thinking it would cost £1000’s. I was wrong it doesn’t, all I paid in total was £650 to get treated. I was diagnosed within two consultations as a very poor converter of Levothyroxine T4 to active T3. The NHS point blank refused to put me on a T3 trial even though my life had come to a halt after working full time. I went on a private 3 month trial of liothyronine T3 plus T4 Levothyroxine. Oh boy my legs came back within days. I could walk. I could walk anywhere. I felt energised. I felt brilliant. All I needed was the T3 Liothyronine medication added. This was 2 years ago now. I go walking briskly twice a day every day now. I put on loads of weight being unable to move. I’ve now lost more than 4st and feel 20 years younger. I also did the DIO2 gene test through Regenerus Laboratories which is promoted on here at a cost of £165 which includes test plus a qualified person to interpret the result. Mine was positive, I have this faulty gene. You should do this test if you haven’t already. I now know what is wrong with me and why it’s wrong. For me I need to understand the reasons behind to explain it to myself. Your legs issues sound very similar to mine. I also had nausea like you, mine was due to too low cortisol. My cortisol is now good after starting T3 prior it was always too low. T3 boosts just about everything in your body to where it should be when in correct dose. Low cortisol causes nausea.
If you want my private only Endocrinologist’s details please just private message me. He is well respected and is the most senior Endo in the U.K.
I continue to feel well and happy.
Have you checked your vitamins also. B12, ferritin, folate and vit D.
I found I also needed B12 and ferritin now on a regular basis.
I had two dogs who where full of life like yours. Often walking them I’d feel a bit faint half way through our walks. It was the conversion of Levothyroxine to active T3 starting to fail. It just got worse over the years. I was diagnosed with Hashimotos in 2008 and struggled through to 2019. Now with T3 added I am full of energy and feel robbed of 11 years of a half life.
Oh and your TSH should never be above 2.5. It should be around 1.00. Anything above 2.5 is hypo and you’ll need further treatment ie T3 if your T4 is at the top of T4 range on current dosage. My private only Endocrinologist explained to me that the NHS’s range is too wide. TSH needs to be below 2.5!!
Many people think 50 or 75mcg Levothyroxine is too low. But you need to check where your bloods are before upping anything. If 75mcg or 50mcg gets you to the top then you certainly don’t need an increase or your TSH will get suppressed. Too much isn’t always good.
And to the imaginative Josephineinamachine - this is extremely helpful information. Another fish-bound heavy legs sufferer here but no nausea. On 75 Levo too and TSH under 1 last time. But, how, in this Covid crisis, do I dare ask my GP for my overdue annual test, plus the one for my kidney function? I am interested in the T3 conversion and it seems a good idea to do that private test. £650 is, however, not affordable for me. I don't suppose the gene test would address the conversion issue. Are there any tests you can do at home, and even if they showed poor conversion, would the NHS prescribe T3? Thank you.
I wrote a message to my GP (there’s a link on their webpage). I listed all my issues. She text me 3 days later and asked me to book a blood test. Then a day after that we had a phone conversation. It’s not ideal, but I was glad I wrote to her first as the phone call was 6 mins long and I would never have got everything sorted in that time.Maybe this is worth a try for you? This way you don’t have to plead with the receptionist to get a phone appointment with a GP for you.
Did it stop the heavy legs? Coos I've been researching online and medical papers say taking T3 if you are shown not to be converting it is not the answer. Several said that. It's unbelievably complicated what factors affect the conversion. Stress, liver condition, all sorts, and that taking selenium and magnesium (which I already Do) also help provide the enzymes which enable the production of T3.
If you test positive for the Dio2 genetic defect your body isn't producing the enzyme needed to convert T4 to T3. Therefore you need some T3 or you stay sick. The co-factors for conversion are talked about here all the time. B12, Ferritin, Folate, Vitamin D. You need all those. But with the Dio2 genetic defect they still won't solve the issue.
But, if you are genetically incapable of the conversion, would you not have had symptoms all your life? I'd like views on that if you or others care to reply. Thanks.
It depends. Some things are cast in stone, some not. Our bodies change as we age, especially women during menopause which is when so many of us succumb to hypothyroidism. A general deterioration just makes different things come to the fore. Personally I think now that I have had some more minor issues with it all along, but not all the time.
FancyPants54 Trill and McPammy I think I've had a range of issues over the past 5 or 6 years which seemed unconnected to anything and generally put down to being meno or post-meno. Looking back I think these were signs and symptoms of developing Hashis. The symptoms I have now are a bit more classic though - weight gain, cold and a bit miserable - and also fish legs (which finally stumped me but did result in a diagnosis). Never considered Hashis before. I can't believe how relieved I was to get a diagnosis now. Only 6 months ago and my response was 'phew, well at least I can get better'. Little did I know then...!
The Dio2 test costs around £160. McPammy spent £650 in total for 2 x private endo appointments, this test and a private 3 month trial of T3. And her Dio2 test results got her T3 on the NHS via an NHS endo. GPs won't prescribe though and mine didn't even read the results, just handed them back and said he didn't understand it so I go privately now too.
No. It's Regenerous Labs. I can't remember the details. Start a new post about the Dio2 Regenerus test and one of the much more experienced people will give you the details you need. That's what I did.
Hi Mcpammy really interested in what you have said ,i have bashed my head for years with doctors over these issues and got nowhere, as many others will know. I am hypothyroid and on 175 levo a day. Whilst i believe this to be the correct dosage i really dont feel well a lot of the time and wonder if i would be better on t3,t4 combo . I am interested in going private like you as i just dont have the time or energy to battle with my gp which is wrong but unfortunately a fact. Could you pass me the details of your private endo please. I am also interested in the DI02teast but know little about it. Any help would be gratefully appreciated.
First step BEFORE considering seeing any thyroid specialist endocrinologist.....
We ALWAYS need FULL thyroid and vitamin testing done BEFORE booking any consultation
Important to get vitamins tested and supplement to optimal levels before considering adding T3
If you have Hashimoto’s, frequently necessary to be absolutely strictly gluten free.....getting coeliac blood test done before trying strictly gluten free diet for minimum 3-6 months.
If gluten free diet helps this also suggests likely to need addition of T3 prescribed alongside levothyroxine
Hi your symptoms sound familiar. I have recently become hypothyroid and I don’t think I convert well. I would be interested to have the name of your Endo if you would be happy to share it privately. Thank you Marian
Thank you @McPammy! I've just seen your pm as well. Absolutely massively appreciate your post and the info. I may very well need to do the gene test. I'm going to see what the results are of the bloods taken today. I think I understand then that without being able to convert to T3 then increasing T4 will only end up in worsening hypo symptoms? X
I read your interesting reply..... could I ask how much t4 and t3 you take? And also did you feel any side effects early on? Lastly what dose you felt optimum on? Thanks I’m advance x.
I take 75mcg Levothyroxine which gets me to the top of my T4 blood tests without leaving any hours from dose taking to blood draw. I also take 5mcg T3 twice a day which also takes me to the top limit of my blood ranges for T3 again without leaving hours between my dose and blood draw. If I leave say 16hrs my level drops to about 50% through the ranges.
I seem to not need big doses of either Levothyroxine or Liothyronine to make me feel optimal. Some people need much higher doses. It must be all about our own individual make ups
and endocrine systems. We are all different. It all about calculating how much takes you to the top of your ranges then compensating with additional T4 or T3 medications. However, if I go the gym on a regular basis I do need to increase my T3 dose to 5mcg three times a day. Currently I’m not going the gym and twice a day is sufficient for me. It’s about ensuring you don’t go over T4 or T3 ranges and trying to keep your TSH within range if you can I believe. After all this is how we work naturally.
Keep it simple and keep within ranges if you possibly can.
Ahh thanks for that. I take 75 mcg levo and 2 x 5mcg t3. It’s early days for me on t3 so I don’t know what my bloods are. My t4 was running at 50 odd % through the range on 100mcg levo so it’ll be interesting to see what my bloods are. May I ask what you tsh was/is? And I’m sorry to interrogate you ( ! ) but you obviously feel better for t3 but I’m assuming it was the trial dose that worked for you? Thanks in advance x.
My latest TSH was 0.63 (0.35-5.50). My T4 was 11.4 (7.86-14.4) and my T3 was 4.8 (3.7-6.0). I hadn’t taken any medication for 16hrs before my test. I feel good on these results as when I take my medication the results would have increased to just below the top of each range. I know this as I’ve also done the tests without leaving any time from taking my medication well about 2 hrs. I wanted to know what it’d be when it spiked.
I have the same thing; so totally understand where you are coming from. For me it is totally random. Some days I'm fine and can walk 2 hours no problem. Other days I can barely make it to the end of the driveway (I don't live in a mansion so my driveway is not very long). I blame it on my low T3. In summer I seem to have fewer episodes of it then in winter. No idea why, really. Both my T4 and T3 go up slightly in summer but not significantly. But maybe even a little bit makes all the difference. I hope that an increase in your dose will bring you relief.
I take 5000 units a day throughout the year because, for whatever reason, being in the summer sun makes no difference in my D levels. It is a valid thought, though, and starting to fill my D storage after being very depleted made a difference, but not for the leg issue. I have broken my shoulder, my kneecap, my wrist, my arm and had to have my face stitched up because my legs do funny things from one moment to the next. Totally unexpected quite often. Sometimes I can feel it coming and think I still have time and then.......bam!........kissing the ground. The irony is that I love walking, always have, but now I get increasingly more afraid of doing it and definitely try not to by myself.
That's horrid buddy99 that you feel afraid of walking now. And also that you've had all of those injuries. Sending you a big hug (I know it's not particularly helpful, but the best I can do with my limited understanding of anything right now) x Take care
Thank you, Josephineinmachine, I really appreciate your kindness and empathy. We're all in the same boat here with some boats leaking more than others. Being supported makes a big difference for morale. It keeps me going when I just want to pack it in. So thanks again.
Thyroid hormone levels naturally dip in winter. Those on T3 only usually have to increase dose in winter and reduce it in summer. Native people (can't remember where) used to eat animal thyroid in spring to increase their metabolism to improve conception rates.
I too have suffered years of varying levels of leg grief, it’s horrid. I have also suffered from varicose veins since I was 16. Had some veins stripped but others just pop instead so have accepted they are what they are and keep them covered. I learnt some years ago that I need to keep my thyroid levels decent to ease leg pain. Over the years GPs have prescribed several things but not yet found a miracle cure. For me keeping my thyroid stable plus walking is essential.
I note you have feelings that there is a drop in blood sugar levels. I am diabetic and bizarrely it is when my blood sugar is high, I get the symptoms you describe as a blood sugar crash. When my blood sugars are low it’s a far more significant reaction and I need immediately to deal with the problem. If you have Hashimotos then you are more prone to other autoimmune conditions. Ask you GP to check your HbA1c as you are having this problem. It really is important to get this checked out.
I had the weak legs thing come on 15 months after I had Radio Iodine for Graves. Got so bad I had to buy a walking thing with a seat and then got a mobility scooter. Even then I couldn't stand in a queue in a shop so progressed to wheelchair. They added in T3 and some of my symptoms improved straight away but the weakness didn't. My vitamin D was 7 and we don't know how long it had been that low. They have put it down to osteomalacia and unless they catch it early enough isn't reversible. I would definitely make sure they test for that. Good luck.
Same here. Legs like lead...especially going up a hill. And feeling so weak if I didn't eat something I'd faint. Doc said it's connected to my underactive thyroid. Then he left practice. I'm on T3 now and don't get that now although still have some symptoms. Good luck.
Thank you Marymary7 I think T3 may possibly be where I'm heading in the future - unless a Levo increase does the trick. The more I read, though, the more doubtful I am about Levo! Take care x
This was definitely a symptom for me before I discovered my B12 levels were really low. Since being on injections for B12 this has disappeared, and I’m now able to go for walks.
Yes to the fish legs, loving this description, mine were all flappy, and as a teacher, totally useless for being on my feet all day. I found this such a difficult one to describe to people! Walking home from work, I honestly could have fallen asleep while walking. I used support tights, which helped a little. I don't know for sure, but taking the vit d seemed to help this symptom. Now I'm on 125 Levo, this seems to be better on the whole. Keep going with the bloodtests until you feel better. It does get better!
Thank you GrowingVeg ! I also teach. I'm really actually grateful for online teaching at the moment because I have learned to teach sitting down (which was a bit tricky to start with). I'm now worried about being on my feet all day when we go back (am working in a uni so still online for a while). Thank you for the hope though and yes to the 'flappy legs' description! Where has my muscle gone???😳
I have had these symptoms and more. And nothing helps. And I’m always searching for answers. I found an article from the Mayo Clinic on amyloidosis. I have every symptom. I made an appointment with my doctor for April 7 to talk to her about this disease which can go undiagnosed for years because the symptoms are attributed to more common problems. It is not curable but I want to know anyway. You need a urine analysis and a blood test. I’ll post after my appointment.
I wish you good days. I know how heavy legs and the fatigue it brings can feel.
Oh my gosh I HEAR you on this. This is one of the symptoms I hate the most. Its so awful. Getting taken out by this condition and finding that exercise you once loved is now causing such pain.
I went on holiday with my partner two months after being diagnosed and I was popping ibroprufen and paracetamol to get through the day. We did a gentle 5 min walk to a shop to have a mooch and I had to hold on to him the whole way there and then in the shop I had to hold on to something the whole time otherwise I really was just going to collapse onto the floor. I am 28 years old and I felt 100.
That was what took me to this community and basically started me on the journey of looking at what I could do to help using diet and lifestyle, whereas the GP was just like "we just need to get your meds right".
Well that's all very well but
A. It takes ages sometimes to do that and your quality of life is suffering in the meantime and
B. It doesn't treat the root cause of the problem - do you have hashimotos?- if you do then your immune system might attack your thyroid again and then you have to go through the whole rigmarole again.
Now the thing that helped lose this symptom was this:
- you have to rest. Your body is not lying when it screams out that it needs this. We shouldn't push past this. Not very helpful if you have to take the dog out and no one can do it for you but I had to mention it.
- it might be worth trying Dr.Wentz's diet recommendations. I'm not medically trained and there are people on here who know way more about all this than me but when I first got diagnosed I found all of this to be ALOT. And I just need a one thing at a time approach.
1. I got started on levo and I absorbed the fact that i was aiming for this to bring the blood tests "in range" so it was replacing what my body wasn't producing.
2. I was forced to slow down. I stopped walking for two hours a day and rested.
3. I changed my diet. I noticed the difference in a day. No joke for me it was like my body was like THANK YOU, FINALLY!
There are 3 diets. I started with the first one. Within two weeks I was like OK cool. This is it. And once I was in range I felt completly normal again. Like I was never sick. The trouble is then I started to feel invincible and I would drink too much or get lax on the gluten front and I'd end up really sick again and my levo wouldnt absorb, so then I was out of range and its a whole mess.
Now before you cut out gluten, I had a blood test but they did it amongst the ones they were doing to find a diagnosis and it came back negative (probably cuz they didn't tell me they were going to do it and I hadn't eaten much gluten cuz I was on a diet trying to lose weight). But when I described how my symptoms had changed after cutting it out following on from this they wanted to refer me for an endescopy. You have to eat gluten for like 5|6 weeks and I wasn't going to do that now I was free of the symptoms, and also the longer you go without it the more sensitive you get. Now honestly a scraping of marmite (I've made this mistake) makes me feel like my bones are lava and my muscles lead and my eyes swell up and droop and my brain stops working and yeah... it's bad times haha.
The thing is it is good to get a diagnosis if you can because you get more support from the NHS that way. I wish they had let me know they wanted to test that and to eat x amount of gluten in preparation for it, after which I could have cut it out. As it was I found out after I had cut out gluten that they had done this test. So yeah if they haven't tested for it yet and you think you might have eaten enough gluten for it to show up on the test or would be willing to, it might be worth asking them. You could do this quiz to see if it might apply:
Most of it went over my head but I worked through the paleo diet and the AIP diet after glutening myself 3 times in one month and triggering a nasty flare. It helped me massively along with another step up of levo. Felt back to normal.
5. I read it again and understood more this time.
6. I finally accepted that I would have to pay for some private testing as my GP just wouldn't test the full thyroid panel or the nutrients we are often deficient in.
7. I used this community for the godsend they are and finally understood their answers a bit more.
8. With their help I started to supplement as well.
9. I now feel so good I was able to start running again and it felt GREAT! I still cut out gluten, dairy and soy and stay within my units for alcohol. If I ever have a flare I go straight back to the GP to ask for blood tests sooner (once in range they don't ask you to come back every 6 weeks) so I can get levo up if needed and I go onto Dr. Wentzs paleo diet again moving onto AIP diet if needed.
Everyone's bodies are different but I think the idea is you remove foods that are commonly reactive. You can then see if you can reintroduce them one at a time and see how you go. She explains more but it's like every 4 days you can bring in another thing and you watch for the 4 days to see if you have any symptoms. You kinda need to know what to look out for cuz its mad what you get used to. But by the time you're reintroducing things you shouldn't have any symptoms so it's more apparent when they come back.
Anyway sorry for blabbering on but hopefully some of it is useful to you 😊
Thank you @Flowerpot108! Really appreciate. I'm trying everything with my diet now - probably too much at once. I've given up soya milk (can you imagine I was drinking a litre a day for 5 years on the advice of a GP?). I've started drinking hemp milk now because it's meant to have anti-inflammatory properties. I'm eating turmeric 'something' every day. Lots of water (often with fresh lemon). No gluten (been gluten free for years) but do have cheese...am trying to come to terms with possibly having to give up cheese. I've been looking at Paleo and the AIP diet and figuring out what I can add/take away. I don't drink now. Last time I had a drink I got very, very sick! I gave up smoking 2 years ago. I have got Hashis and with the help of this lovely forum I now take all of the vitamins and supplements. I will now buy that book!! thank you! x
Its naff I feel for you. I was stood doing the ironing today and my legs wobbled like jelly. Me and hubby not fit I talked to our Labrador told her she's the last one standing. We are both less then sixty in fact the dogs fitter and older. Ha ha.
I feel that...I rescued Clive (manic dog) I think just before Hashi really took hold. Within weeks of getting him I was exhausted and started having difficulties walking. Rotten luck with that. Thought I had the 'rescue dog blues' but a year on diagnosed... At least he seems happy with his lot!
Our daughter has a collie they are very active dogs they want to go out in all weathers. Our lab is happy staying in if I feel not up to it she is so loving. I think that its good to have a dog because I need to get out fresh air sunshine exercise no matter how naff I feel. This hypo business is strange what it does to the body. I had my covid jab this morning wasn't too nervous but you would think so looking at my jelly shaking legs Felt I had to explain to someone who looked concerned for me.
I'd avoid Teva - whilst it works for some I just found it too weird. Not sure if I had your leg thing but my legs were so awful - I'd go out for a walk and wonder how I would be able to put one foot in front of the other to get home- I couldn't bear one to rest on the other in bed so had to put pillows between them and just general pain everywhere! Getting my levels up has cured that now - still got other symptoms but my legs are tons better.
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Being supported makes a big difference for morale. It keeps me going when I just want to pack it in. So thanks again.
Does this sound like Lyme?
Should I feel well?? 
Do these sound like too much adrenaline symptoms? 
Do i need to see my GP?
