Hi,After I 'd lost 5 stone from 16st to 11st. Last year..Have been on Thyroxine meds for at least 15y Then Gp informed me blood test results show my Thyroxine not working Increased to 175mg Then 6mths later..still not working...and I suffered,could not find a clear space,Brain fog.My skin went dry I started to age.My weight all piled back on and it continues to increase despite a lot of effort & food restrictions to try and stop it,the wieght makes everything harder.It returned so fast...but it's an odd appearance , almost like lwearing a fat suit...filled wiv slosh ..its heavy and its a lot like water retention...
I wondered if my Gp could refer me to an endometrist ? As it seems like my body tissues are full of fluid...Its hard to explain its not solid fat..Just heavy but sloshy !! Its not like Fat that I used to have b4 I lost 5 stone..This has all been aquired very quickly whilst my thyroid wasn't working... You can see on the photo this huge mass around my knee ! Something that I've never ,ever ,had b4.. It's making life painful..I'm currently doing 800 cals a day ...In an attempt to rid myself of this ...Anyone experience rapid weight gain..like this wiv Throud meds not working.
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FabBabs
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I'm sorry you're having such a miserable time. I for one find it impossible to lose weight unless BOTH free T4 and free T3 are nice and high in range. So the first question is, do you have any recent blood results you can post? [plus related lab ranges as these vary from lab to lab]
These are quite likely to show that you have never actually had free T3 tested ... which is another reason for getting your historic blood results - ie so you can see just how little has been tested.
If you have an amenable GP it's also worth trying to get key nutrients testing - ferritin, folate, vit D and B12 - as your levo works best when these are good - but for may of us hypos key nutrients need supplementing. I've had some success with my GP by saying that these are the tests recommended by Thyroid UK.
ALWAYS have an early morning, fasting blood test, with a 24 gap from your previous dose of levo (take the next dose straight afterwards) and to get the most from your levo always take it on an empty stomach, just with water, a good hour before or 2 hours after eating or drinking anything else
Hi thats a good plan..as I do not have the previous results where my Gp informed me the Thyroxine wasn't working...but My Gp asked me to write to her...So I can add some of these details...As they actually shoved me on Thyroxine years ago and simply increased the dose up to 175mg..I've had no 'real care' for this...but I've suffered all the classic symptoms despite the increased dose...I've got a feeling the increased dose is affecting my eyes...I'm seeing black spots ,and I can sometimes feel a pressure building in that area...watering etc...Anyway its time I took some sort of control of this as Throxine alone isn't helping...I cant believe how quick this puffy wieght attached to me..It really isn't a womens best friend is it.?
I shall request another test and see what results I have...I suppose they might have my previous ones...Interesting to see. ? Thanks for making a way forward 4 me.
Hi I'm so silly,Endocrinoligist of course...I think the other endo. Is something to do with fibroids...Oh goodness ,Thanks for pointing out 'cos I dont think I can change it.
Please do get your results and ranges, because I would love to know what she means by " blood test results show my Thyroxine not working" I've never heard that before. But, it's a hormone, not a drug, it can't not work. It's just not doing what you want it to do. And, my guess is that your body isn't converting the T4 you're taking (levo: a storage hormone) to the active hormone, T3. It happens to a lot of us. But, you can only know if you have the FT4 and the FT3 tested at the same time.
Do ring the receptionist and ask her to print-out a copy of your last results, they will still have them in their records. And, every time you have any sort of blood test, always, always as for a print-out - it's your legal right to have one.
Babs When we are not correctly medicated our body collects fluid which is what has happened to you. We need calories to convert the T4 that we take into the T3 that every cell in the body uses. by being on a restrictive diet you are probably making things worse and giving your body fewer T3 hormones to work with.
Thanks for that info,I truly have been caught in a vicious dieting circle...to lose 5 stone from 16st -11st from dieting alone...As I have some awful pain to deal with,so I couldn't mobilise to excercise...Then to see it flood back in such a short time is horrible...I done a keto diet which isn't just cals its low Carb....I've been doing portion control, a tiny bowl of what I considered nutricious..Never over indulged,a slither of cake at Birthdays.Yet it didn't matter what I ate .Every mouthful just seemed to shove itself somewhere.Right down to love handles everywhere !!!
On my knees,on my arms...Weight just keeps piling on .I went up to 17stone...No clothes fite and it is hellish to try and haul it around...Some people can carry it but I cant...
I dont know how to normalise my eating now ??
At a painful 17 I started the keto again...The calories are mainly protien...Think I'm at 16 and a half now...
I feel i've got to get my Meds working...is there a different thyroxine to try ?
Apparently my cholesterol raised I had a mssge from health centre telling me to try mediteranean diet..Yet When I had gallstones I was told the opposite...lowfat ,no dairy diet, just crisp things like raw carrots etc..
I just dont know anymore I truly dont..
Why do they say when you're prescribed Thyroxine "you should lose weight now !?
Thank you for that info ,it is much clearer now ,I must get my meds and T3 levels correct b4 dieting ,because despite some sort of success wiv the keto diet,alot of it was processed keto products wiv lots of hidden nasties..Not true food ..The problem when you end keto Normal food becomes dangerous an apple is deemed too many carbs, as is a carrot, I would never of considered a carrot salad a fattening thing but after Keto it is..and your carbs intake will turn to fat, how I flick that switch back I dont know ? but getting that T3 flowing is key...Thanks for helping me understand...
Being on very low calorie diet will significantly affect (in bad way) how you convert levothyroxine (Ft4) into active hormone (ft3)
Do you always get same brand of levothyroxine
Which brand
What vitamin supplements are you currently taking
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
When on T3, day before test, split dose into three smaller doses roughly equal 8 hour intervals. Taking last dose T3 at roughly 8-12 hours before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue
Thankyou Thankyou,Obviously at first glance,I couldn't grasp everything...but I did understand it is a very clear plan for my first actions..to attempt to support myself through this illness...I've had such a low level of care over this issue...but I must get a grip...because I certainly dont want a yr like last year...I simply could not find a clear space because of the brain fog...and dy skin...awful when you feel ,too tired to bother to exfoliate and take care of oneself...Which I used to do religiously..Always had rituals to take care of my skin...Then last year I went through a period where I felt too exhausted to brush my hair...Just dreadful, I'm sure it was this thyroid thing dragging me down..
So thank you again I shall note everything down...and see How I fare..
Sounds as horrible as it looks !! Have you ever come across any treatment that targets it ?Years ago I had a book that swore Bodybrushing was the sure fired way to eliminate "cellulite " I cant tell if it worked because back then I was very active and even fit...could of been anything that kept it off..
Theres a definite chance it could be Mucin...I 've been wondering if my Lymph glands have called it a day ?along with my thyroid...
Interested to know what you've been told about mucin.?
Someone on here recommended treatment with NAC and its cofactor Vit C...I have started this recently, but Im not expecting fast results. I think it may me longish term. The worst for me is the collection in my feet/ankles which is really uncomfortable.
Thats interesting,because my elder sister was dignosed Hyper and they actually obliterated her thyroid gland with Lasers and radio active stuff...I cant quite recall the correct term for it..Then she was placed on Thyroxine for life..She's always been treated privately, she's never mentioned T3 to me ,and I have no idea how her body would convert it...if her thyroid has been radio actively incinerated ?Then I was diagnosed , then her daughter was diagnosed too... so it's definitly run in the family..They might be on to something ...
Aaw! Really, Love handles on the knees too... Thats what I've decided to call them...My body has really changed since this agonising trapped bunch of nerves in my lower spine...I have to contort and sit oddly in an attempt to alleviate the pain...and because I'm not walking any more..My behind sticks out a mile ! It actually looks like I'm sticking it out on purpose...which I am , to alleviate the pain...but goodness me..People get shocked when they havn't seen me 4 a while.I may post the other leg later , cos It's definitely different...I thought it was (my calf) bigger because of my back probs...but I read a little snippet somewhere about the calf muscle in one leg swelling 'cos of the thyroid....Have you ever heard that or experienced it...
My thyroid was removed 11 years ago, I ballooned up by 6 stone in 2 years eeeek. I have lost most the weight, I was covered in blubber, it isn't fat, it's mucin, it's dimply if pressed like cellulite ugh. Once on t3 I lost it all over except my legs, they feel heavy and swollen all the time. I am hoping it goes eventually, I walk and garden so not sitting all day but it's ugly and depressing, everything is ankle length now. My calves are fat like my knees so both of mine are swollen!
Aaw ! Isn't it ghastly My elder sisters thyroid was treated wiv radiovactive iodine which I think obliterated it...I'm not sure if it was removed ? She has a little scar there...it was a long time ago...Her daughter was diagnosed too. I have to get my t3 levels checked...it seems key to this wieght...Probs I used to wear leggings that had 14% or above of elastin in so it 's a bit like a compression garment...I think they help...definitely staved off water retention and flab...!! I live gardening by the way...once on midsummers day I looked out of my bedroom window and there wasn't an inch of the garden that didn't have a flower in full bloom ,as far as the eye could see...There fences bordering the garden were full of jasmine roses & honeysuckle...I had to move and now cant lift a thing...I thought of just throwing in some seeds but the sun never hits the front garden ever ! The backs got a lot of shade too...but I would plant fuschias and hydrangeas as they deal with the shade...A little sidetracked there !!
Yep I'm in long skirts too.My daughter always sez "why dont you wear this ?"? and the answers always a deppressing...because I have to cover my knees...etc...Oh well once upon a time all this blubber was deamed beautiful...Happy gardening take good care
Do you mean a 'Endocrinologist'? as an Endometrist deals with:-
Endometritis is inflammation of the inner lining of the uterus (endometrium). Symptoms may include fever, lower abdominal pain, and abnormal vaginal bleeding or discharge. It is the most common cause of infection after childbirth.
Yep ! Getting my endo's confused...I may be able to edit on my newer phone...This old one doesn't seem to have the ability...God forbid I dont have fibroids as well
This happened to me when I was in my 30's. I have always had a thyroid condition with no problems, never gained weight, but if I did, was able to lose it. Then when I was 32, my then GP decided that my medication dose was too high. Reduced it from 200 mcg to 75 mcg. I started swelling, gaining fluid. I had gyne problems, developed B12 deficiency and pernicious anaemia, iron anaemia. Finally, I had to go and see a gynaecologist, due to heavy periods, who told me that my thyroid was completely out of kilter, so referred me to her colleague who was a Endocrinologist (both in the private sector). By this time, I had gained a lot of weight, fluid mainly. To cut a long story short, I am now back on my original dose, plus T3 medication. Still fighting with the weight, but the swelling is now coming down.
My current GP will say the oedema is because of my weight, but it started with the thyroid medication, being changed, it has caused all sorts of problems. I used to suffer with cellulitis, never able to get shoes to fit, fragile skin, the list goes on. The oedema started in the ankles, initially in my left foot and leg. At the worst, I had it in both legs and stomach.
I agree, about the calories, 800 is far too low, 1200 is the lowest you should ever go. But you do need a full panel of tests done. I was lucky to be tested in the private sector due to a work medical insurance, I had at the time (medically retired now). The NHS kept fobbing me off and trying to get me off the T3 medication, due to the expense. However, I have stood my ground. Just starting on Keto and low carb. I feel so much better now.
Losing weight can lead to levothyroxine not being converted into t3. Same thing happened to me. Will go and look for the info i had about it and post it ..... x
Thank you...There's a lot to consider if embarking on a diet..Wieght gain in the case of people wiv thyroid issues isn't simply down to munching too many biscuits etc.. The hormones secreted by a healthy functioning thyroid gland are key to wieght control. Getting proper nutritional advice and understanding the blood test results are important. Things I didn't consider when I embarked on a Keto wieght loss programme..After keto a simple carrot us deemed as too many carbs and your body if its been deprived of carbs for so long is actually going to convert any carbs you eat to fat, It holds onto everthing...I havn't eaten a slice of bread, pasta,rice,potatoes or any traditional carbs in a yr and still managed to baloon to 17stone.. A stone heavier than I was at the start of my keto diet where I lost 5st..I think the research is definitely onto something...My mind is unable to assimilate all the analyctics of the research..but it was clear egnough to see the T3 production slows right down...I do need to see if I can obtain my blood test results and even see if I could be referred to an endocrinoligist....not the other endo I mentioned...Thats how kerfuddled I am ! Thanks again..
Yeah, the general idea from, well, everyone,is lose weight lose weight, but in the 20 years since i lost the weight and then put it back on, i have been on a permanent diet and spent a lot of time pointlessly exercising. I have been on t3 and ndt.... i lost a little last year when my folate was increased, but nothing else seems to have made any difference.
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Continued weight gain on thyroxine. How is this possible?
Just started Eltroxin
3 months since diagnosis, no weight loss. Reassure me!
Thyroid disorder and fibroids!
Has anybody else felt worse on Armour?
