I was diagnosed around a year ago with hypothyroidism after weeks and weeks of dieting and exercising like mad with no results. I was dieting to get in shape for a knee replacement. My GP did blood tests which she described my thyroid as being “in my boots”.
I started on 50mcg daily and after a few blood tests and meds titration I am now on 125mcg daily and still feel the same as I did a year ago. I eat healthy and am quite active but still find it difficult to shift even 1lb! It’s soul destroying!
My last TSH was 0.49. The attached results was where I started a year ago.
I have done a lot of research and spoken to lots of people (I work in specialist haematology) and discovered that not everyone responds to t4 alone so decided to add some t3 into the mix. The first lot I got were fakes, I know that for certain now. The last lot I was more trusting of but 4 weeks down the line I’m still feeling no different and I’m in despair. I want my knee replacement but it’s never going to happen unless I get my weight down and despite all my efforts I’m not getting any results.
Can anyone advise please?
Many thanks
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Peril1504
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T3 is not a magic bullet, and it's not a weight-loss drug. And you have to take enough of it for it to do anything. So, if anyone is going to be able to help you, we need numbers:
- last blood test results: what FT3 tested? What were the results and the range?
- did you get FT4 and FT3 tested at the same time before adding T3? If so: results and the range.
- is your doctor dosing by the TSH? If so, the chances of you ever getting well are very slim - it's absolutely the wrong thing to do.
- how much T3 are you taking?
Some people do need to take T3 with their levo (T4) but some people are just under-medicated on levo - especially if doctor is dosing by the TSH. The TSH is absolutely not going to tell him/her if you're on the right dose. It's only going to tell you if the pituitary is satisfied with the dose (TSH is a pituitary hormone, not a thyroid hormone) but the rest of the body can remain hypo. Doctors don't understand that, I'm afraid.
Hi and thank you for replying. The only recent thyroid result I have was the one I posted in my original post. It was the only result that had previously been out of range so it was the only result added to my patient access app. My GP only prescribes on TSH and FT4. (My previous FT4 was within range ) They have never once tested for my T3 result.
I’m currently taking 50mcg of Tiromel daily.
The results below were the ones that put my FT4 level into the reference range. They didn’t test for that in my most recent test (or at least they didn’t add it to my NHS app) as they already knew it was within range.
I’m thinking of asking for onward referral to am endocrinologist as after reading on sites like this one, I know that GP’s aren’t really that clued up on hypothyroidism other than the prescribing of levothyroxine.
Endos aren't that clued-up either! The majority are diabetes specialists.
50 mcg T3 is a lot for someone also taking 125 mcg levo! How much did you start on? And how fast did you increase? Could be that you've well over-shot your sweet-spot, and too much thyroid hormone is as bad as too little.
I know the NHS rarely tests FT3, but you should have done it privately before starting T3. It's foolhardy to start it without testing first, you have no base-line, no idea how well you convert.
As to your results, if these blighters are trying to get round the Data Protection Act - or whatever it's called, the one that makes it a legal right for you to have YOUR results - by cherry-picking the results they put on-line. call their bluff and ask for a print-out - it is your legal right to have one and they cannot refuse. If they try, there are measures you can take to force them, and I'm sure they don't want that kind of unpleasantness, do they?
Where do I go for a private t3 result please? Is it something I can just google or is there a recommended place to go?
I started on 25mcg t3 daily for 3 weeks and have recently increased to 50mcg daily.
What worries me about your response is if endo’s are no better than GP’s then where on earth do we go for help?
Something I possibly should add is that I had a gastric bypass around 20 years ago and still can’t eat a lot so should not be the weight I am at the moment. It’s soul destroying 🥺
But, you don't want just T3, you want full thyroid testing:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin
The TSH, FT4 and FT3 need to be interpreted in conjunction with each other, you do not get the full picture by just looking at one of them.
If you've had a gastric bypass, on top of being hypo, then you are bound to be low in nutrients. And low nutrients are going to cause a lot of symptoms. Plus the thyroid hormone you're taking will not 'work' correctly with low nutrients.
I started on 25mcg t3 daily for 3 weeks and have recently increased to 50mcg daily.
Sorry, but that is insane. What is normally recommended is starting on 6.5 mcg, and increasing by 6.5 mcg every six weeks until you get to one full tablet, and then holding for six weeks and retesting. I'm not surprised it's not helping, your body has not had time to adjust to it and start using it correctly. You are probably very over-medicated by now. Most people only need about 15 - 20 mcg T3 when taking levo.
What worries me about your response is if endo’s are no better than GP’s then where on earth do we go for help?
That is the question we'd all like an answer to. Some people have managed to find a decent endo, but even so, you cannot just leave it up to the doctors and trust that he will do the best for you. You need to learn about your own disease and advocate for yourself. Many of us self-treat (I do) because we cannot find a doctor that knows even half what we know about thyroid. If you read my profile, you will see that I've seen a lot of doctors! And they were all pretty useless. And that is the case with most of us on here.
Of course, there are the lucky ones that do well on levo despite their doctors but doctors just don't learn very much about thyroid in med school. And that is the lamantable truth.
I imagine you had the gastric bypass because you couldn't lose weight? So, you were probably already hypo at that time, and had been for several years. But another thing that doctors don't understand is that hypo weight-gain has little to do with how much you eat nor how much you exercise. It is to do with low metabolism. And that can be made worse by dieting. You need calories to be able to convert T4 to T3, reduce calories and you get more hypo, and therefore put on more weight.
Besides, it's more likely to be water-retention than fat. And no amount of dieting will get rid of the water. Next you're going to ask me what will! And that's another question we would all like an answer to. But the sad truth is that there are a lot of questions around the thyroid and very few answers.
That said, getting on the right dose of the right form of thyroid hormone replacement will help. But, over-dosing will have the same effects as under-dosing and will not help you lose any sort of weight. Those with hyperthyroidism can also put on a lot of weight.
So, the priority for you should be to get all that testing done and then see what you need to do next. Post the results and ranges on here and there will be lots of help with understanding them and sorting out the problems they highlight.
Thank you. I will do all you recommend. I had the bypass because I couldn’t keep the weight off (personal past traumas) I had no trouble losing it so I don’t think I was hypo then.
Actually I had Graves’ disease around 2013 and I lost an incredible amount of weight before I went to the doc and found out what was wrong. I thought I was dying. My endo back then said he’d rarely seen results as high as mine and I was rushed to clinic as an emergency (it helps that I work with clinical haematologists). I had been stable from the graves right until last year and never had any trouble losing weight until that point.
No it didn’t just fizzle out. I was on carbimazole and levothyroxine for about a year and a half. My levels were normal so they decided on a trial off treatment. They said a percentage would stay normal, some would require radioactive iodine and some would need to be on meds for life. My levels stayed in the normal range off treatment so other than 6 monthly bloods that was it. I didn’t gain any weight for many years after that. It was only last year that I started having hypo symptoms, weight gain, dry skin, aversion to cold etc. That was 10 years ago and I have no idea if any antibody tests were done I’m afraid.
In that you have ended up hypo now I suggest that you never had Graves but a hyper phase in the early stages of Hashimoto's. people with Graves don't tend to go hypo.
Totally agree with Jaydee. It does not sound likely that you really had Graves'. But doctors think they know it all and don't need to do the necessary testing!
You really need to get hold of your medical records for as far back as possible. Your doctor won't like it, but if doctors were more efficient we wouldn't need to do things like that. Patients should be automatically given copies of their blood test results, as they are in France.
All of the research I’ve done though tells me that it’s very common for people who were hyper to then go hypo as it’s just another autoimmune disorder. I’ve had more than one autoimmune disorder over the years and my understanding is that certain people like myself are prone to them.
Yes, that's correct. But that's not Graves'. That's Hashimoto's Thyroiditis. Two totally different thyroid diseases, with totally different antibodies. Which is why antibodies should always be tested!
Personally, I don't think I would go back to the place that 'diagnosed' me without doing the proper testing. But, if you went to your GP, he would have to refer you to an endo because he can only test for Hashi's antibodies, not Graves' antibodies - for some weird unknown reason!
Graves' antibodies:
TRAB
TSI
Hashi's antibodies:
TPO antibodies
Tg antibodies.
Ideally they would all four be tested. But, given that you are now hypo, TPOab and TgAB are the most important.
I work for the same NHS trust that treated my Graves’ disease so i think they really really aren’t going to be happy lol. Should I go to them or my GP who originally diagnosed me?
Following gastric bypass you are very likely low in the vitamins. Add hypothyroidism and you most certainly will be low in B12, folate, ferritin and zinc. Also need selenium
If you follow greygoose advice that's the best plan. Blood tests, vitamin test etc.etc.
You sound as though you are in freefall, I was twice but following the advice on here is what made me well again. Most Endos are useless, anyway and a complete waste of money and effort.
I think its time you got some private tests run to find out exactly where you are at.
There are several reasons why someone might not feel better on Levo alone. They may have low or deficient vitamin levels which is very common as we get low stomach acid and cannot absorb vitamin well from our food.
We need OPTIMAL levels of ferritin, folate, B12 & d3 for our thyroid hormone to work well.
They may need a higher dose of levo or they may need a small amount of T3 in addition to Levo if they don't convert well.
Have you ever had your thyroid antibodies tested? The NHS will test TPO antobodies but privately you can also test Tg, Thyroglobulin antibodies.
Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
First step would be to get tests run privately for TSH, FT4 & FT3, thyroid antibodies, ferritin, folate & B12, D3.
Take note of the blood test protocol below and follow that for every test. There are packages that the blood testing companies offer and money off codes in this link. thyroiduk.org/help-and-supp...
There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Also, if your current TSH is 0.49 then you have fake tablets. We recommend beginning T3 cautiously at 5mcgs a day for a few weeks and then if all is well adding 10mcgs more. You may need to reduce your Levo when you add T3. Not something to be doing blind without blood tests.
I'd recommend waiting until you get your blood results for both thyroid & vitamins. Make a new post when you have them and members will comment. Take it from there.
So if you’re only on T3 you would expect TSH to be zero or there abouts
My last TSH was 0.49. The attached results was where I started a year ago.
Absolutely ESSENTIAL to test TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
nether Levothyroxine or T3 will “work” if vitamin levels are poor
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Thank you. I will look at getting some private tests done. My vitamin D level was low when I was first diagnosed so I was given loading dose vitamin d to take for a couple of weeks. I also take twice daily Adcal d3 due to previous gastric surgery and I need to take this for life. I also take a B vitamin supplement as I know that can help with thyroid trouble.
I’ve read a lot about this and know I have to take it first thing an hour before food or caffeine. I also stopped taking my PPI as I know that stomach acids are needed to break down the levo and PPI’s suppress those acids needed. It made no difference either.
I’m grateful to all the replies from everyone and there’s a lot to read. Hopefully I will get there in te end.
Take careful notice of your B12 level. The range is hopelessly wide. Anything under 500 is considered deficient by the B12 experts (not the NHS!) Having had a gastric bypass you will be very vulnerable to low B12 levels and it's needed for thyroid hormone to work well. You might be able to take oral B12 supplements, but with your stomach reduced you may not be producing intrinsic factor to extract the vitamin from food or tablets and might need injections of it.
I had B12 injections for a few years after pernicious anaemia after a hip replacement. A few years ago when I had a blood test the levels of B12 had gone back to normal so they took it off my repeat prescriptions
Sorry, I'm confused. Were you diagnosed with pernicious anaemia? If so, you need injections for life! They can't be stopped. You can't extract the B12 from food or oral supplements. Please go and talk to them about this. There is a great lack of understanding where B12 is concerned. If your blood results on injections were "good" that meant the injections were working and should have been continued. If you stop them the levels will fall again.
I think you need to make this a priority action. It could be messing with everything else.
This is from my health record. They said it was caused by blood loss after surgery and the injections I had for a while put my levels right so I didn’t need them any more.
Once you have started injections then blood results should be disregarded. I believe quite a few people had their injection stopped during the pandemic.
There is a PA group here on HealthUnlocked that I would recommend you go get some advise about how to get your B12 injections restarted.
Your ferritin there was below the range. What happened about that?
Sorry I didn’t reply about my ferritin. I was given ferrous fumarate but I couldn’t tolerate it. I tried reducing the dose right down but if gave me such an upset stomach I stopped it. I think I might ask if my GP might add ferritin and vitamin D to my test next week though the last time I asked for my vitamin D to be tested I was told that people in the UK are expected to have low vitamin D. I’m on twice daily Adcal D3 so should that be enough to keep my Vitamin D level up?
Many people don't tolerate the NHS iron. You could try and push GP for an iron infusion or theres a product many here have done well with and tolerated OK. Perhaps give that a try. Your ferritin was on the floor and won't be helping how you feel at all. Also you won;t be able to use your thyroid hormone properly.
That is very much on the low side. The B12 experts say we should aim for top of the range or over, not low down. Your folate level is good. Can you get the B12 retested now before starting on some supplements?
I’m going to speak to my GP as apparently after gastric bypass I should get B12 injections for life so I don’t see why it should have been stopped. I’m going to ask them. Fingers crossed.
She might have jumped right through that level to the area where you feel just the same as you did on too little hormone. I've done that. I think the conversion enzyme D3 plays a part here. It sees the excess and rapidly converts it to T2 which has no direct effect. It can overdo the conversion and leave you feeling as bad as ever.
A PA diagnosis means you cannot absorb b12 through your stomach. On top of which you had a gastric bypass. The only way you will get B12 into your system is through regular B12 injections. I'd go on B12d. Org and fill in their symptoms checker list. Neurological symptoms such as numbness, tingling, tremors, twitches, blurred or double vision etc should be treated with alternate day injections until symptoms resolve. It's important to get your B12 injections reinstated to aboid long term permenant damage.There is absolutely no need to test B12 once on jabs. Frequency of injections should be based on a level whereby you have no symptoms. Latter is a mute point and pmenty of people end up buying their own B13 Nd self injecting because the NHS won't inject frequently enough.
Seems to me you have been very poorly treated and it's time to take charge so you can get well.
Thank you. I’m starting to think you are right. I’m going to get back in touch with my GP and see if I can get them restarted. If not, I will buy myself and inject. I’ve injected tinzaparin in the past and am not worried about a little subcut injection.
No problem. If you have a problem with GP refer them to the NICE B12 guidelines. I'm three years on and cintinue to inject B12 everyday. But Bs work together so it's advisable to take Basic B Complex like Thorne's Basic B which also contains Folate. This ensure max usage of the B12 & keeps everything balanced.you eill have to buy it yourself though. My GPs nurse supplies me with needles and syringes. The B12, vials are on my repeat prescription.
I'm appalled your GP stopped them. Ignorant and negligent. Not long ago I had a GP who wanted to test my B12 & I said no to it. Explained to her why..... Had to repeat because she was most insistsnt but she backed off in the ebd. Had to be firm though! So you have all my sympathy.
Good Luck. Pleasent but firm. Point out you have been formerly diagnosed with PA and can't understand why your B12 jabs were stopped as they are needed for life. If you don't have neurological symptoms they eill probably repeat the loading of two week then only give a B12 injection every 2-3, months. Many find this woefully inadequate. It's important to know that the number of injections set are not based on any scientific body of evidence! It was an arbitory decision. I assume to save money.
Result! They have agreed I should be on b12 for life. I’ve got to have a blood test but not until 31st October. It’s not to decide whether I need it or not but to decide whether I need a loading dose first as she has agreed it should never have been stopped. It might not be perfect but it’s a start. If I need more then I will self administer but I will see how this goes. Thanks for your help 😊
Great news.... But they should be guided by symptoms not B12 blood test. Well done u. 👍👏👏 I'd resist the blood test and ask for the loading period. Any excess B12 is excreted out. Did you feel fine on the injection regime you had before?
3yrs? Wow!! That's awful!! Loading dose period for sure... Do u have any symptoms of B12d?I think she's asked for blood test because they are so reliant on blood tests. They don't seem to be taught about patient presentation, looking out for signs symptoms these days, like old school doctors were.
I think there's a pinned post on the vitamin B basic brands. I think there's 3 recommended brands I use the Thorne's Basic B. You can get it online. iherb often has it. Mine came from an online uk pharmacy. Shop around with Google, price can vary. There's usually 90 in a bottle of Thorne's.
My Serum B12 is 228 ng/L which is apparently ‘normal’ meltdown at the GPs yesterday! I’ve got a phonecall this afternoon! Will recite NICE guidelines to them about being borderline deficient.❤️ good luck Peril1504 btw I have a gastric band (11 years ago)..
Good luck for your phone call. My GP was surprisingly agreeable with my request as I was prepared to do battle. I had a vertical stomach staple together with a bowel bypass over 20 years ago. It’s weird how they have me on Adcal d3 which is for life after gastric bypass but yet they overlooked the B12. Hopefully we both get sorted out. Keep us posted.
Just wanted to reach out and send you a big hug. Your story sounds like mine. It’s a minefield and you don’t know where to turn. Thank goodness for the experts on here who give their advice for free 🙏
I’m due to see my first Endo next week, I hope he’s a decent one 🙈
Good luck with the endo. If I don’t really get anywhere I might ask for referral. I know most of them don’t seem much good but I work in a well known trust where a lot of the doctors are the best in their field though I’ve no idea about the endos here. I might have a chat with them before deciding if it’s worth getting referred here. Best of luck with yours. I really need to get something sorted as I’m sick of feeling rubbish when it’s not of my own doing. I eat healthy and sensibly and don’t really drink much so there’s no reason for how rubbish I feel. I wonder if I can carry on working to retirement age when it’s a struggle to get out of bed on a daily basis and I’ve still 6 years to go 😞
Glad you can check the endos out carefully many are not thyroid specislist but diabetes and know no more than a GP. So be careful. Many are anti T3 products/, use and believe TSH rules. Thyroid Uk have a list of thyroid friendly docs but they still need checking out carefully.
I’ve had the same problem, nothing worked until I joined a well established slimming group. I have dropped a stone so far and have lost 8 inches from my waist.
Hi. I already follow a low fat/low carb/high protein diet but until I get my system running as it should then nothing is going to help me lose weight. I’ve had weight problems all my life and what I’m doing with regards to weight loss but at the moment it’s not working. Hopefully once all my levels are correct then the weight should come off in due course.
I wonder if anyone can answer this for me please? I read that selenium is important for thyroid function so I have bought some high dose from Amazon. I also take a vitamin and mineral complex every day which says has 100%RDA selenium so have I wasted my money? It’s just a supermarket supplement I take.
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