Hello, I am new to the site. I have been low thyroid for over 20 years now. I initially welcomed my diagnosis because I hoped that I would be able to lose the weight that I had gained uncharacteristically for me once I had my thyroxine levels ok, but that didn't happen. I found ThyroidUK and tried every which way to lose weight (I had been 10 stone 3 lbs size 12/14 for many years before suddenly starting to gain) but nothing worked for me.
I finally decided to forget trying, walk away and just forget it, because my head was just continually buzzing with how I might lose weight, why nothing was working, etc etc. It is mainly my weight which I can't take, the rest I can manage. I would see my GP questions, might it be, this, that or the other? Of course he got fed up with me, told me that with the rise of the dreaded internet, patients were too fond of trying to 'self-medic' themselves!
Eventually I realised that I was not going to lose weight, forget the many diets and slimming groups who I had spent a fortune on, forget Mr Atkins diet, it was never going to happen. I was thinking about it every hour of every day, becoming more and more distressed about it.
So, I walked away, took up hobbies which could take my mind off it. I still took my thyroxine and had regular blood tests etc, eventually I was on 200 mcg of Levothyroxine) but I tried hard to bury it.
In late 2011, I was 15 stones and size 22. I had gone through the menopause, which was horrendous. I tried HRT but gained 2 stones in around 3-4 weeks, so they stopped me trying that again and I had to just go it alone.
I woke up one morning and decided that I had to try again. I would just try it........gave myself a 1,200 calorie daily limit, weighed myself daily and weighed and recorded every ounce of food that passed my lips. No one was more astounded that this time it worked!
I have no idea why it worked, but I was delighted to be a size 12 again in August 2012.
When I was the same weight at the beginning of 2013, I hit the sales and bought myself new clothes. They were not in use for long.
In mid 2013 I began to gain weight again. It was a relentlous, slow gain, no matter what I did. I might lose a pound here and there, but a day or so later it was back again plus ounces if not a pound?
Really, I did not blame my thyroid, because I was taking my thyroxine, being tested, asked the Dr why this might be happening and getting told that all I had to do was eat less calories than I used every day! Simples! No good telling people that I really was not over eating, no one believed me and I thought that if I tried explaining what I ate, showed them my growing pile of food diaries, they would probably think that I had written down some terrific unbelievable story for some reason or other and so deluding myself.
I became very depressed was put onto anti depressants. My weight reached 14 stones again and rising.
In November 2018 my husband and I split up.
In February I began to find a lot of hair on my hair brush, I put it down to the shock of my husband leaving, or my age (I will be 68 in June this year).
I began to lose weight, I had been going to weekly Yoga, Tai Chi and Pilates classes, plus watching my diet as usual. I got down to 12 stone 5 lbs in about July 2019, my belt had to have umpteen new holes made for the buckle, my waist reduced by 6 inches. I did not get further than 12 stone 5 lbs.
I started to gain once more. I puzzled what was I doing wrong (I have asked myself that thousands of times over the years which is one reason why I write everything down!)
Might it be something to do with Type 2 diabetes? My brother is type 1 diabetic, diagnosed in his 20's, his son is type 1 plus my grandson (both diagnosed at the age of 3 yrs) my mother is type 2, so was my father, though neither are/were overweight.
I bought a blood sugar monitor, might I have insulin resistance? My blood sugar never went below 5.3 in the morning, before eating or drinking. I only ever reached a high of 9. I talked to my brother about it, the consensous of opinion was that if anything I had low blood sugar. I eat pretty well low carb anyway, because I find that white refined bread, white rice, cakes chocolate, etc, all leave me with a raging thirst and that seems to me to point toward high blood sugar aka diabetes on the way. So I have mostly avoided such things for years, though I am no saint!
I joined a weight loss group on Facebook. The admin on the group turned out to be a GP.
I told my story, gave my family history, type 1 & 2 diabetes cousin with cealiac disease, asthma, eczema etc etc
The Admin Dr asked me if I had heard of Hashimoto's disease and no one had ever mentioned this to me. She edplwined what it was and said that with my family history of auto immune diseases, I could have that and that it was more common than I could imagine.
I went to find the ThyroidUk web site, joined again, talked to my celiac cousin about it - she was very interested of course, and my type 1 diabetic brother, (who also has leaukemia and has just had his stomach removed because of cancer)
Now you know why I am here, giving you all a lengthy story of doom & gloom.
Are blood tests for Hashimoto's readily available? I asked years ago to see an Endocrinologist but was refused, how likely might I be if I pluck up the courage to ask again? I don't know how I would cope with being told that I am a neurotic, post menopausal old idiot of a woman who spends too much time online again!
Can anyone give me any advice? Go to see a GP, yes, I will do that of course.0, because I have no other option.
Thanks for hearing my story.
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BrynGlas
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Are blood tests for Hashimoto's readily available?
Yes. Your GP can arrange for Thyroid Peroxidase (TPO) antibodies to be tested if he feels so inclined. There is also another type - Thyroglobulin (Tg) which is not done at GP level, only tends to be done when an endocrinologist requests it. However, you can be negative for TPO but positive for Tg and that would still suggest Hashi's.
Then again, it's possible to have Hashi's and never have raised antibodies.
You can also do private tests and many of us here do that. It might be a good idea for you to get a full thyroid and vitamin panel as a first step to give you a complete picture. We have recommended labs that do fingerprick tests, they also do venous blood draw tests at extra cost:
Medichecks Thyroid Check ULTRAVIT medichecks.com/thyroid-func... You can use code THYROIDUK for a 10% discount on any test not on special offer
Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:
For the fingerprick test:
Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)
Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.
B12 - Blue Horizon does Total B12 which measures bound and unbound (active) B12 but doesn't give a separate result for each. Medichecks does Active B12.
Total B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Total B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)
Thank you SeasideSusie I appreciate your reply and advice. I have been wondering about the B12 issue, can't remember where I read about it now, but I have been researching vegetetarian diets so that will probably be when it lodged in my brain.
I was on a calcium and vitamin D supplement (prescribed) until fairly recently. I had to see the GP because I am still having regular hot flushes, night and day being drenched in sweat one minute and throwing clothes off, then freezing again inside 5 minutes. So GP a did thyroid check, reduced my thyroxine to 150mcg from 200 mcg and also took away my calcium and Vit D. I have never seen my levels, I have to fill forms in and god knows what to see them, it seems a lot of trouble for probably no gain if it is like any other test or whatever I have had has done.
He said that I didn't need such supplements as calcium and vit D and the less that I put into my body that wasn't necessary the better! I wasn't happy, but didn't argue - that never got me anywhere after all.
The reduction in thyroxine hasn't made any difference whatsoever to the hot flushes
I have cut out dairy now as well as high carbs, so I worry that I am going to make matters worse. I have severely reduced meat and poultry consumption, but still eating eggs and fish, prawns etc.
I take an Omega 3 supplement as well as a vitamin tab with iron daily.
I read on the web site that 'goiterous' vegetables such as kale, broccoli, cabbage, cauliflower etc should not be eaten but they are my faourite vegetables! ;-( Then I read that that only applies to the raw vegetables. Do I really need to cut down on my greens? I will if I have to, but not without grumbling a lot!
Was your calcium tested before your GP prescribed the calcium/Vit D supplement?
Dose changes of Levothyroxine should only be 25mcg at a time, never more.
I assume you are in England and signing up for online access for results. I am in Wales and we don't have that so I just ask for a print out of my results.
Are you taking a multivitamin with iron? Not a good idea. Multivitamins contain too little of anything to help low levels, tend to contain the cheapest, least absorbable, wrong form of ingredients. Also they tend to contain active ingredients that we should test for and only supplement if found to be deficient, eg calcium, iodine, iron. If they contain iron then that affects the absorption of everything else as iron needs to be taken 2 hours away from other supplements.
You don't need to cut down on your greens, cooked and in moderate amounts will be fine.
Some important information for us Hypos :
When doing thyroid tests we advise:
* early morning blood draw, no later than 9am
* overnight fast from evening meal/supper the night before
* water only to drink before blood draw
This is because it will give the highest possible TSH which is needed when we are looking for an increase in dose of Levo or to avoid a reduction in dose. TSH is highest early morning, can lower after eating and coffee affects TSH so it's possible that other caffeine containing drinks will too.
* last dose of Levo should be taken 24 hours before blood draw.
If you take Levo too. Lose to blood draw you get a false high FT4 and if you take it longer than 24 hours away then you get a false low FT4.
Also important generally is to take Levo on an empty stomach, one hour before or 2 hours after food, with a glass of water only and water only for one hour each side. It should be taken 2 hours away from other medication and supplements (some need 4 hours) otherwise absorption can be affected.
When you have test results, post them on the forum, along with their reference ranges, plus units of measurement for Vit D and B12, and members will comment.
Well SeasideSusie, I live near to Caernarfon, Gwynedd, but at the moment I am in Stoke staying with family. I have been here a lot since last February last year, caring for family.
I can get my repeat prescriptions no problem here, but will need to sign in as a temporary patient if I want to see a doctor here, either that or go home and I don't fancy the cold on my mountain at this time of the year to be honest.
I have emailed my surgery at home and asked for my last test results.
They sent me a form to print out (no printer here though) and so I need to send them an sae so that they can send me the form, for me to sign and send it back to them asking for my results, along with another sae which they will use to send me last results!...........Hopefully that is!! Theyvare nothing if not in thec21st century it sometimes feels.
Ok, I hear you about the multivitamins, I will stop those.
I have never been asked to fast for a thyroid test and never had blood taken for them before lunchtime I don't think. I have certainly never been asked to fast before a blood test. The nurses double up as reception staff and I don't think that blood tests are done during surgery times. I have often wondered how I would go on if I wanted a fasting blood sugar test! I have had one of those before, about 30 years ago because of crippling headaches in early morning which they said were caused by low blood sugar and I was to eat the minute I woke up in future!
That has eased a lot over the years, though I can still get terrible headaches if my BM goes through the floor. Now I have my BM monitor I can check that.
Yes, thyroxine taken in the morning on an empty stomach, other meds taken between 8 and 10 pm I suppose.
You're about an hour so north of me, I take it you're in the Betsi Cadwaladr University Health Board area like I am. It was put into Special Measures in 2015 and still no improvement in 2019. Of course, GP surgeries vary, mine's nothing to write home about!
If you don't think you've had all those tests listed above done by your surgery, and you definitely won't have had TG antibodies tested, probably not TPO antibodies tested, and possibly not the vitamins tested, then I would seriously consider the private test mentioned.
Yes I am in the Betsi Cadwaladr range. I have never been near a hospital for my thyroid though, only for my epilepsy and I had to raise Caine to get that done! I rejected the Neurologist who was available at the Bangor hospital, because I discovered that he had a terrible reputation and I insisted that I be referred to the Walton Centre in Liverpool. I wasn't popular with the local health board because I complained loudly, put it all into the local newspapers etc The Neurology department was poor. I had joined the local Epilepsy group who told me of the complaints they had made and the deplorable state of the department. Complaints were ignored apparently.
It was worth the treck (I had no driving licence at the time because I had started having fits again) it was a long journey on the train and a long walk to Fazackerly (spelling?) after I got off the train. But I got the treatment that I needed and shortly after that the Walton Centre started a 'satellite' clinic at Ysbwty Gwynedd which I can go to now when I need to.
If I have to, I am willing to go the same mile for thyroid patients, though I could do without the aggravation.
I have an idea of how to go about it now, after the Neurology thing. I don't know why patients have to go to such lengths when they have legitimate illnesses that are only going to get worse. I need to bone up again on low thyroid issues first though, because I have forgotten what I used to know and things have changed, hopefully, since I was last in the zone about thyroid problems.
I will email the Practice Manager at home too, to ask what blood tests are available on the NHS. If we need them, they should be done and that is all there is to it. It would be a start at least. I have no idea exactly what blood tests would have been done for me, but I suspect just the basic one - T4, it would be nice to be wrong though.
"I have never been near a hospital for my thyroid though"
I would advise keep keeping it that way as far as BCUHB is concerned. I saw an endo in Bangor back in 2002 and he made me very ill, I had to give up working in my own business and be looked after for 2 years, all because he wanted my suppressed TSH range regardless of where my FT4 and FT3 were.
I have recently made a formal complaint about a consultant in another department there but it came to nothing, they cover their backs and, of course, what I complained about I had "perceived" as the consultant had a different recollection of what happened.
If you've just had the one basic thyroid test done at your surgery it will be TSH.
Yes SeasideSusie, I get the same picture when I think of Betsi Cadwaldr. One of my elderly neighbours was ill and admitted to Ysbwty Gwynedd, he had fallem trying to get a Ram out of his garden. He was in dreadful pain and pretty poorly, he kept being sent to A&E and I was forever rushing off there to fetching him home again, & staff telling me that it was all in his mind. He became pretty much incontinant too. A week or so later he had an appointment at the hospital and he disappeared. He didn't come home, the hospital had no idea where he was either., police couldn't help.
After 4 weeks, he turned up at home again.
He told me that he had been to outpatients to discuss test results that day and when they they finished with him - telling him that nothing untoward had come up on his scan again - he left to go and wait for an ambulance home. He said that suddenly the 2 doctors who he had just seen came screeching around the corner and told him that he couldn't go home but had to go to the Royal Stoke hospital (it was called the City General when I lived here) for an operation because he had broken vertebrae in his spine!!!
You couldn't make it up!! Was he a lucky man, still going and is well over 80 now.
Next time you need to go to the hospital, you could do with an 'escort', they wouldn't be able to tell lies then. If you are stuck for an escort I would be willing, if I was home.
Just been looking back at your message SeasideSusie, so go with the Medichecks then do you think? I have already registered with them. £29 for the full thing I think.
I have emailed them too, but of course I didn't do that until Friday night, so I knew that I wouldn't have a reply until tomorrow at the eraliest.
I just want to get as much info as possible at once, but I won't have to get out at the crack of dawn either if I go for the whole lot with Medicheck!
That's my recommendation if you want full thyroid and vitamin panel.
£29 for the full thing I think.
No. You can get TSH/FT4/FT3 only done for £29 with MonitorMyHealth - see SlowDragon's reply, she's the one who has mentioned that.
The full thyroid/vitamin panel with Medichecks is £99 normal price, sometimes on offer at £79 on the occasional Thursday, otherwise you can use the 10% code I mentioned in my reply above.
Remember to do the test under the correct conditions which I put in my original reply above.
I was thinking the same thing as I read your story: Hashi's! Been there, done that. BUT, at the same time, I think you have a conversion problem. Most Hashi's people do. How often do you have a blood test? Does your doctor ever test your FT3. What does he test: TSH only? Have you ever asked for a print-out of your results?
Of course he says to eat less and exercise more, they all do. They know nothing about nutrition. They shouldn't really be giving dietary advice because they do learn about it in med school. I cannot tell you all the daft advice I've been given over the years! Like cutting out every trace of fat and living on boiled carrots and rice! Good job I ignored that, or I'd be dead by now!
Are you still only eating 1200 calories a day? That could be part of the problem. You need calories to convert, you should be eating more like 2000 calories a day.
But, anyway, if you have any of your blood test results, post them on here with the ranges, and let's have a look. If you haven't, ask at reception for a print-out - if you live in the UK, it's your legal right to have a copy. Then we can really get down to sorting this out.
Hi Greygoose. I have no idea what tests they do on my blood, I gave up asking many years ago, because I was told that I was on the thyroxine dose that I needed to get my levels up to normal and that was it.
And when I was so determined to get myself sorted out, as I said in my Newbie post, I just got nowhere, the doctor's thought I was neurotic and spent too much time online.
I let it all drop to save my sanity, because I got nowhere at all except more depressed. That is why I never thought about my thyroid when I started to gain weight, feel the cold, lose hair again etc It was my last thought.
I know that when I was on Thyroid Uk before, I went to see a private Dr who worked with Thyroid Uk if I remember rightly? He would go to different areas of the UK I believe, and see members who were having problems. I think I went to Wrexham to see him, but I may have the area wrong, I don't know.
I remember that he did the reflex test for cortisone, am I remembering that rightly? Anyway, I was positive for that adrenal test, if that is the right way of describing it. It is a very long time ago and I have forgotten what I could have spouted then chapter and verse, because I couldn't cope with it all. He did advise me to go down the Atkins diet route and I remember how shocked I was to hear a Dr advising that diet. It didn't help though, because I had tried Atkins many times, I could get into ketosis, but I lost a pound/gained a pound just like I have described earlier and that is still happening.
Anyway, I told my then GP about my consultation and the adrenal result (too much cortisone/too little cortisone?) but he would have none of that whatsoever and again accused me of taking too much notice of such rubbish, or something like that.
I have no idea what the relevance of the adrenal issue now though, it has all been of no use at all to me, must go see if I can find it later.
I don't have much idea of what you call 'conversion'? Of calories?
I am not eating 1,200 calories I don't think. I have got sick of working it all out to be honest. I still weigh and record everything, but can't be bothered to get my book out to work out the calories at the moment. I have really bad headaches if I go too low in my blood sugar, and I can't stand to be hungry. I have stopped dairy, meat and poultry and high carbs I have avoided for years. That's where I am at the moment, but I am still going up and down
I am very open to advice though, as well as willing to try anything (once or twice) and thank you for your reply.
OK, well, things have changed, and now the law says that you are entitled to your results - with ranges - and that your doctor cannot refuse to give them to you. If he does, there are steps you can take to force him to give them to you. But, don't ask him. Ask his receptionist. You're more likely to get what you want from her. And, don't stand any old nonsense from her! Just remind her that she's breaking the law if she refuses.
Without your results, we cannot possibly advise. It would just be guessing, and that's not good. But, one thing I will tell you and that is that your weight-gain is unlikely to be fat. Therefore, no sort of diet is going to help. It's water. And, very difficult to get rid of. But, impossible unless you are optimally medicated. And, we can't know if you're optimally medicated without seeing your blood test results.
Have you ever considered having private blood tests done? The NHS will never test everything you need testing, anyway - especially with an ignorant lump like your GP! With private testing you can get the full picture:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin
because low nutrients can make it difficult to lose weight, too.
I don't have much idea of what you call 'conversion'? Of calories?
Conversion of T4 to T3. The levo you're taking is T4, which is basically the thyroid storage hormone. To be of any use, it needs to be converted (i.e. have on iodine atom removed) to the active thyroid hormone, T3. This is supposed to happen automatically, but we're not all very good at it. With the result that we have low levels of T3 no matter how much levo we take. And, it's low T3 that causes symptoms like weight-gain.
To know how well you convert, you need to have your FT4 and FT3 tested at the same time. But, the NHS will very rarely test the FT3, so we have to do it privately.
Welcome to our forum. I'd suggest you copy and paste your story into your Profile which only has your name at present. Members, in future will have your background to look at before responding and relieves you from answering similar questions.
Unexplained weight gain is one of the commonest queries and it is due to hypo (low) lowering our metabolism so that weight is easy to increase.
Hi, Shaws, I have been trying to add to my profile, but it doesn't seem to have worked and I only have a tablet here to use at the moment. I will try though.
Yes, I understand that it is likely to be my low thyroid which is causing the trouble and that is why I am looking for another test.
How much would it cost me to have a private blood test done, could you tell me please? I need to have it done if I can possibly afford it, because I have never been happy with the blood tests that I have had to date and I have rarely felt that all was well, since before I was diagnosed in the first place!
I forgot to say that I rarely eat bread, pasta anything with gluten really. If I want bread I have rye 'black' bread, but that is rare. I love bread of all types, but feel better without it.
If you do need to be gluten free....that does need to be absolutely strictly gluten free....absolutely no wheat, rye of barley
Eating as if coeliac...no shared butter, cutting mats, separate toaster for GF toast etc etc
It's EXTREMELY common for conversion to get worse after menopause or the longer we are on Levothyroxine
Low vitamins affect conversion too
Lower vitamin levels become more common as we age
Eg B12 levels drop significantly as we get older
Drenching night sweats is often linked to low B12 .
Last but not least ....stress is the enemy of thyroid problems .....
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 and thyroid antibodies
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
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, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
No, at home I seem to have different makes of levo every few weeks, same with my epilepsy medication, that is in a different type of packet every month it seems. I just assumed that this was a constantly changing search for the cheapest drugs! I hate it because I often get confused for a second or two when I have just opened a new box of whatever - which is a different colour to the box I emptied only yesterday!!!!
I never thought of that, but I can understand why you would need to have the same company's Levo each month. Since I have been mostly in Stoke for the last 11 months though, I have always had the same make of medication across the board.
I am having the 100 mcg and the 50mcg Levo from different sources here though, I know that, but same every month. I will see what companies they are tomorrow, I want to have a nice warm bath and read a chapter of my book before going to bed!
Rye bread, yes, I do eat it occasionally because it is more of a slow release/low GI item. I don't go for much of the instant high GI sugar rush foods because of the diabetes thing within my family, it does at least make me less likely to crash out an hour after eating. I have heard my cousin talking about gluten free bread etc, she is coeliac! LoL I will try not to bother. What about oat meal, is that ok to eat? I have not had oatmeal for years, but funnily enough I bought a large pack a couple of weeks ago. No point if it has gluten!
No, I have my Levatiracetam (for epilepsy) to take at night because they are supposed to make you drowsy and I can't miss them or I will have no driving licence! ;-( I used to take my vitamin D at night too, because of the problem with the clash with thyroxine.
I have 2 Nutriblends with milling heads that have never been used for any grain, so I could use one of those. But I really don't think that I will be milling oats just yet a wile.
The 100 mcg are Activa, the 50 mcg are indeed Teva! There will be hell to play surely if I start demanding Levo from a specific companies? I could talk to my pharmacist at home, but I am not at home and I don't think my GP would be amused one bit!
Have others had problems asking for different brands?
Until better data become available, I will continue to follow the AACE/ATA/TES recommendations on LT4 treatment in my practice. Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Maybe type your history in another area of your computer and then copy/paste it into your Profile.
Some advice - which you may already aware of:-
Blood draw has always to be at the very earliest, fasting (you can drink water) and miss out your early a.m. dose and take after blood draw. This will give you reasonable results. Also make sure you are well-hydrated a couple of days before and arms/hands are warm before drawing blood.
TSH is highest early a.m. and drops throughout the day. The the majority of doctors/GPs only look at the TSH result and pronounce their viewpoint.
The aim, for us the patient, is a TSH of 1 or lower : a Free T4 and Free T3 (the latter two are rarely tested) in the upper part of the ranges.
There are three labs that do home finger pin-prick blood tests and make sure you are well-hydrated a couple of days before so blood is easy to draw.
p.s. TSH is at its highest early a.m. and doctors seem only to look at this and considering it is from the pituitary gland - not thyroid gland - I don't know why they take more notice of this result than a FT4 or FT3.
Levothyroxine is T4. T4 is an inactive hormone and has to convert to T3. T3 is the active thyroid hormone and is needed in the millions of T3 receptor cells in order for us to function and brain/heart contain the most T3 receptor cells.
Ask GP to test B12, Vit D, iron, ferritin and folate. Vit B12 and Vit D are prohormones and everything has to be optimal.
All the amount of dieting will not work if you have a underactive thyroid. How do I know this? Well I have been remission from Graves' disease for 6 months and have lost about a stone and a half without dieting. I don't think I have had a flat stomach like this since before I had my children and that is many moons ago. I am size 10 now and I am eating as much as I can because I don't want to be a size 8 which is too thin because I am 5.5" and I will look terrible.
You need to ask for all your blood tests since you started your treatment and then post them on here. I would not be surprised if you are undermedicated and that is why your weight is up and down and diets don't work.
Hi Lora7again, I know it can be impossible to lose weight, that is why I was so upset for so many years and gaining silly amounts.
But why suddenly can I start losing suddenly and so easily? I lost 3 stones in 2011 - 2012, the following year I started gaining again. I was 14 stones at the end of 2018, but up to around June, I got down to 12stone 5lb again until it the gains began again. I am 12 st 12lbs today.
I never experienced this swings and roundabout weight loss/gain before.
Omg, that is something that I have no chance of changing, I wouldn't try because I would lose my licence if I started to have fits again. Living alone on a mountain, 1,000 feet up, on a mountain track, 1/4 of a mile from a road or a neighbour, I can't do without my car.
I do know that because a relative of mine has epilepsy and has just lost 5 stone because he was very overweight I was just pointing out the medication does that. He has also lost most of his teeth because of the medication. You also have thyroid disease which could be adding to it.
Ohhhhh, the only good thing at the moment is that ai am not having fits, my heart sank at the thought that I might have to send my driving licence back to DVLA to try to stop my weight gain!
That's ok, everyone means well and I do appreciate your thoughts and contributions.
Hi, Bryn! I was hyperactive as a youngster never gaining. At 17 I was 78 pounds. Finally diagnosed and medicated I gained some weight. After my first born died from what I viewed as a consequence of taking the meds while pregnant, I refused to continue taking them. I had two more healthy babies, got divorced, and all was good for about 20 years when I began gaining weight rapidly. I was then diagnosed hypo and given synthroid which I am still on today at age 74. I stopped gaining weight but couldn’t lose an ounce until I joined LeanLine which is now defunct. Back then I was late 30’s. We ate regular food just limited potions and we had a check list. So much protein, fruit, vegetables. Starch, once we had checked all our allowed foods, we were done for the day. We had many “free” foods to have after we were checked for the day. I was losing 2-3 pounds a week, reached my goal of losing 50. It stayed off for 15 years. Then through life problems and stress it came back full force. I am trying to find my LeanLine book so I can share it here but no luck so far. You're not alone so hang in there. Actually going to look again today for the book, so wish me luck!
Ahh, Bonnie, it is nice of you to try to give me a shoulder to lean on, thank you I really appreciate it.
I have a 5:2 diet book somewhere and that has a similar way of organising daily allowances, I will have a look for it and review it again. I am trying vegetarian but with fish/eggs only, it allows more protein than carbs which I like really.
I feel better when I am not eating high carbohydrate foods, and I am continuing that way at the moment, keeping off the lentils/pulses etc because they are high carb too.
I wish it wasn't so flipping complicated and no one here understands lowthyroid and think that I am being silly and gaining weight just because I am eating too much, or because I am being lazy! When I am cream crackered I can understand them thinking that,
Oh thank you, vocalEK, it makes sense though doesn't it?
Keeping it simple. 1,000 calories would be fine for me. Because I haven't been eating high calories daily anyway I find that I become full very quickly.
Having said that, I was tempted today by a slice of raspberry cheesecake! It sat there and cried for me to eat it you know! And when it said I had probably not had any for well over a year, I caved totally, I deserved it, it told me...... HONEST IT DID!!!
Bryn, I don’t know if you’ve ever heard of Rutgers University but LeanLine was developed by two of their professors. It folded because the secretary/treasurer had absconded with their funds. There was a big scandal and it never returned. But it helped so many of us while they were active including two of my relatives.
Welcome to the site BrysnGlas u couldn't have come to a better site I'm also a newbie from before Christmas. I have hypothyroidism also hashimoto thyroiditis my gp did both tests. I've been so unlucky with my endocrinologist no interest in hashimoto also I have major hair loss major fatigue and massive weight gain I've gone from all my life 9st to 9st 4 to 14 9lbs as I type. Perhaps we can learn together. I'm still fighting with my gp for print out of my results it seem u can get them so easy in England but I keep getting refused. I'm on 175 mg eltroxin. Hope u feel better soon. Hope we all do
Hi, thank you for your message, I do appreciate you taking the time to get in touch.
So you can maybe understand my absolute horror to be just huge, I will never be able to accept it. I might be elderly, I can fope with thinning/lost hair and I have learned yo live with the exhaustion and depression, but being a size 22 again fills me with dread.
So you are quite recently diagnosed are you? Where do you live? I live in North Wales, but I am staying in Stoke at the moment because my mother has been ill for most of the last year and I can't drive backwards and forwards from home because I often get snowed in at this time of year. So I am staying here for the moment.
If you are having trouble with your endocrinologist, then the local health board should arrange for you to see someone else? I mean Hashimoto's has been diagnosed, I can't see why you shouldn't get another opinion.
I had a similar problem finding a decent neurologist (for my epilepsy) when I moved to Wales from Stoke. I found out about how good the Walton Centre in Liverpool was and I forced the local health board to let me go there, because I knew what a waste of space the local man was and wasn't willing to see such a duffer who had had more complaints about him than I could have imagined. ThyroidUk should be able to let you know of a good one as near as possible to you.
I don't see why we should be paying for private blood tests either, there are so many people around with particularly low thyroid, these days. I only know of one who is hyperthyroid. I am going to fight for my tests and not give up this time, I am determined. But it is difficult to keep on fighting to try to get what is your legal right isn't it? Who has the time, patience and ENERGY to take on that sort of fight willingly? We can do without it.
I have had no print out of my results ever either, in Wales, where I was diagnosed 24 years ago I think it was now.
I have to give my local surgery a call tomorrow because they want me to fill in a form to give my permission to go into my files before they can email them to me! More time and effort wasted!
Yes please, I would love to keep in touch, my email is:-
<redacted email >, that might make it easier to keep in touch, I didn't even know that there was a PMessage facility on this group! LoL
I noticed that Marz had replied and suggested you remove your email address. I just jumped in and removed it. Then you posted about your change not going through!
LoL You are too efficient woman! I couldn't work out why I could delete the words. Thought it might have something to do with using a tablet rather than a pc or laptop
I don't know how to answer that one!!!! Though it doesn't matter to me what you are, everyone on here who are interested in helping me are definately the best!
I never thought of refreshing the page but I will do that in future.
Not going to give any advice but your treatment is no surprise. It seems to be that no matter what age or stage of life we are still being treated as neurotic - pre, post or just menstrual - or pre, post or just menopausal. You’d think the days of treating women as hysterics were relegated to the past, but apparently not. Fact is the majority of thyroid patients are women, the majority of doctors men, though thankfully the latter is changing.
All good health begins in the bowel. If the bacteria is out of balance it triggers autoimmune diseases. Anyone who has been subscribed antibiotics will have their gut flora destroyed. A man was cured of Cdiff infection which did not respond to any treatment....antibiotics so the doctors gave him a fecal transplant from his wife. It worked and he was cured. 6 months later he went back to his GP and complained that he has gained so much weight and is not eating the same unhealthy food his wife eats.....his wife was also overweight. This case triggered the idea that our gut bacteria is what keeps us slim. I take Konjac capsules which fill me up so I don't eat too much but the added benefit is that the Konjac root encourages the growth if good bacteria. Try taking inulin to encourage your own gut bacteria to grow and kefir which is a milk with good bacteria. Saurakrut and Kimchi or any fermented foods also help. Plus good gut bacteria helps they body fight infection.
I seemed to have been on antibiotics practically from when they were introduced - I was born June 30th 1952 - I had lots of tonsillitis and penicillin until my tonsills were removed when I was around 10 years.
My 3 children and 1 of my grandchildren had the same problems with tonsills, though only my grandson had to have his tonsills removed.
Haven't had to have antibiotics for many years now thank goodness and as, over the years I have been made aware of the problems which antibiotics can bring, I have tried to rectify the 'gut' problems. I have used live yogurts and such over the years to see if that worked, but it didn't change anything for me.
After trying such potential ideas/diets over the years, I gave it up and saved my money, but still ate live natural yogurt, and still will, though at the moment, since before Christmas, I am not taking any dairy because I wanted to see if that might improve things............ so far it hasn't.
Yes, I eat saurkraut and kim chi (thanks to Michael Mosley) because I tried it and like it, and I have taken Konjak too. I didn't think the Konjak worked for me though. I have also tried keffir with no improvement in my life that I could feel/see, am a life member of Weight Watchers, have joined Slimming World 4 times now. Only to be told last time I went, that I must have lied in my daily diary entries because if I had actually eaten what I had written in my diary, I could not have gained an ounce! I have even bought my own blood sugar monitor and track it regularly, so I know that I don't have high blood sugar, no hope there then!
I can promise you that I generally do not over eat, though I have on occasions given up and had a day or 2 of giving up trying, but I always return to watching my diet and recording everything, because if I don't I will for sure gain weight. So I carry on trying and hoping that something, some time, might work.
I am thought of as a bit of a nut case in my family because they all think that I am stuffing food that I should not eat down my throat! How else can I keep gaining? I am not making it up. Well who but an 'idiot' or possibly someone with an eating disorder would lie to myself about what I eat?
I will be 68 in June this year. I can look back and see where things started to go wrong for me, how many times things seemed to improve, how many times things changed back again, different problems appeared, things that worked and I lost multiple stones (I had to work on it, it didn't disappear overnight) changed and no longer worked!
I can honestly say that I cannot see anything has changed except that at the moment I have my epilepsy under control, thank the Lord.
That is an awfully long time of trying everything and anything just in case it might work. I have spent a?lot of time searching for answers, finding what I thought seemed to be 'it', only to find that it was most definately not the answer.
I spent time, effort, money that I could not afford and nothing improved so far but my epilepsy. But I still have a glimmer of hope somewhere.
I just don't really see anything improving. I have had my spirits raised may times over the years, but sooner or later things changed again and I was back to square one.
I have been told that I am doing it wrong, do this and it will work, exercise and you will see a difference, see to your 'gut' and it will work, stop being idle, stop stuffing your face and you will lose weight... etc etc
I have honestly tried everything that I have ome across, often multiple times.
Over 40 years is a long time to have been experimenting to find something that allows me to lose weight, if there is a glimmer of hope I try it, because I can't know whether or not it will work for me unless I try, can I?
Nothing has changed my weight gain in a regular and sustainable way and I do exercise, I try to walk a couple of miles every other day if the weather is clement, I do yoga, tai chi and Pilates - at home now because I can't afford to pay £6 for each class - £18 weekly? Not on a state pension.
But I am still here and still open to new possibilties, but I can't see any light on my horizon. This is even the second time I have joined ThyroidUk to try again. So I will still try.
Sorry, I am ranting again. Time for an hour's walk before I waste the day sitting here feeling sorry for myself.
Best wishes to all and thanks for your suggestions, I do appreciate it.
You mentioned your balance in another thread. Do you know your B12 level ? I once read their is a connection between low B12 and epilepsy. Also the brain has more receptors for T3 than any other part of the body , so knowing your FT3 level is key. T4/Levo is inactive in the body. T3 is ACTIVE and needed in every cell of the body ... Ruling out Hashimotos is important.
Not yet I don't no, but my results for last 5 - 20 odd years are hopefully going to be arriving from my Dr's next week, then my plan is to get everything checked, beginning with GP and whatever he will allow me to have tested and then private testing after that.
Do I Marz? It is only outwardly I think then, inside I am a quivering wreck trying to do what I feel I have to do, but continually doing the wrong things, or nothing at all.
I gave up trying to sort my thyroid out years ago when I got nowhere and had to drop it all to save my sanity.
Hopefully I will find my backbone now - around 24 years after diagnosis - because I feel that everything is getting worse and I am beginning to want to bang my head against a brick wall.
I was advised too to have thyroid antibodies checked ( before Christmas) and can't do that without everything else can I, really?
I am torn between wanting to see the results and being terrified that everything will come back normal and then my family would be pleased - they all think I'm crackers!!
I wouldn't worry about your family and their thoughts - time to work on your good self.
If you can afford the FULL Thyroid Testing with Medichecks I would go for it - they have Special Offers on Thursday. Your GP tests are unlikely to include FT3 and BOTH anti-bodies - Medichecks do cover everything. A great investment enabling you to move forward with the right information.
Am sure you know that if you click onto someone's username you can read their Bio - if they have done one ! Only takes a couple of minutes ! So yes many of us have had quite a journey .... 🥰
I didn't know about the name clicking, no, but then I haven't been able to complete putting in my info, don't know whether it is because I don't have access to a computer or laptop here, only my tablet, so that hasn't worked for me.
If I worried about what any of my family think I'd have even less quality of life than I do now!
Do Medichecks do the complete thyroid, vitamin and trace elements at the same time? If so, can you give me an idea of cost? I know that the complete Thyroid is about £29 isn't it?
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The Neurology department was poor. I had joined the local Epilepsy group who told me of the complaints they had made and the deplorable state of the department. Complaints were ignored apparently.
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