I've been really struggling with my under active thyroid since I was 16 and I'm now 24 and things STILL seem to be getting worse.
I was put on levothyroxine from the age of around 17 as I was gaining weight extremely quickly and had severe hair loss. Blood tests confirmed that I had an under active thyroid. I started on 25mcg then soon moved up to 50mcg. I dedicated my life to losing weight and managed to lose 3 stone due to healthy eating and exercise whilst taking 50mcg of levothyroxine. I didn't notice much/ any difference from taking levothyroxine although my blood tests showed that I was now in the 'normal' level. I also often forgot to take my levothyroxine but the doctor said my levels were good. However as I had noticed no positive impact, I was then prescribed a higher dose of 100mcg. Initially I noticed no difference until over the course of around 10 months, I put on 2 stone!!! After being referred to a dietician and recording ALL my food and exercise everyday for over a month (I eat around 1,200 cals a day or less and run 5km four times a week) I was told my lifestyle is healthy and I should be losing 1-2lbs a week based on my diet and exercise, however I gained 3lbs within the month I was monitored.
THEN I clicked- my significant increase in weight gain only began when my dosage was increased to 100mcg! I stopped taking my levothyroxine completely as it was the ONLY thing which I had changed. I didn't take it for a month and then had a blood test (results below) I have now began to take 50mcg daily again but I am close to giving up, my symptoms are worse than ever and it seems no one will help me or even listen/ believe me.
I have begged to be referred to an endocrinologist but got rejected.
When I was taking 100mcg levothyroxine my levels were:
serum free T4 levels: 13.5 pmol/L
Serum TSH level: 1.46mu/L
After 1 month of not taking any levothyroxine my levels changed to:
Serum free T4: 14pmol/L
Serum TSH level: 6.72
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vida_sana
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Thank you for your reply. My vitamin D and iron is within range but I wasn't tested for ferritin or B12 which is annoying if it could be related. It's so frustrating that not one GP I've been to has ever offered me any information or advice! I feel like I'm teaching THEM every time! Yet I'm not able to see a specialist!
I've also not had my antibodies checked. Is that done through a blood test?
I've never heard of selenium supplements but I eat a healthy balanced diet.
Yes, I'm definitely getting the strong impression that I need to go private- at least with the blood tests to begin with, in order to get anywhere. Thank you for the recommendation and suggestions, they're very helpful!
You will soon learn that GP’s don’t know enough about thyroid issues and often Endocrinologist don’t.
Levothyroxine works for some, but not everyone.
I would definitely get those bloods test carried out privately.
Selenium helps the thyroid convert T4 to T3. I take 200mcg daily.
Some people are not successful with the finger prick tests, I haven’t done one, but a few people I know struggle with it.
I had a major phobia of needles, but since this thyroid journey I am so desperate to feel well, I don’t mind now.
Medi checks, offer blood draw walk in appointments in London (I have done this before) or you can pay an extra £25.00 to have your blood taken from a local hospital on there list.
If you phone them and tell them the postcode you live in, they will tell you the nearest hospital. This is what I do now.
Blue horizon offers home visits for blood draw, but can’t guarantee morning appointments, they also offer hospital blood draw, but there hospitals on offer were as not as local for me.
Results come directly to you and you can request a GP comments on your bloods.
If you post the results on here the experienced members will be able to see what’s happening.
Don’t take Levothyroxine the morning of blood draw, drink water only and no food. Book bloods before 9am.
Many people are forced to self medicate. I am now doing this, but, you must make sure vitamins are good first.
You would do better to put your effort into having a good bloods test first. Stay on the same medication keep it steady. A good test is a private one Blue Horizon Thyroid plus eleven, this test will tell you everything you need. Post your results with the ranges on this site for answers.
Don't forget to take the test first thing on an empty stomach, leave off Levo for 24 hours before the test.
I did exactly this and now self medicate and feel well, you can too. I never visit the doctor or Endos anymore I just use this site. I have no thyroid either.
Hi I was diagnosed 20 years ago with borderline Hypothyroidism and since then I have been keeping it reasonably under control by trying to avoid foods that harm the thyroid where possible and following a plant based diet. I thought I would go for a routine blood test to see if I was still on track recently and it showed I should be on medications. Feeling well I asked for a Thyroid Peroxidase Antibody test which I only found out about recently so I could make a educated decision what to do.
I found out I had Hashimoto's Thyroiditis which was a bit of a shock at first. Why they never tested me for this I assume because there is no cure and they treat it with the same medication as Hypothyroidism.
Having been busy researching it seems that I now need to consider removing gluten from my diet which isn't going to be easy, but I like cooking and will give it a go. I have also booked an appointment with a Nutritionist who I understand is knowledgeable in thyroid issues on the 23rd August so I will wait with baited breath to see if she can help. Her clinic also does blood tests which is a relief as my doctor seems reluctant to hand out blood test readily I assume because of the cost to their budget.
However, as you are on medication I suggest that you research what foods you should limit or avoid its all available on the net because it could help you to eventually reduce the amount of thyroid medication you are given if you are cutting down on the foods that might trigger your antibodies to attack your thyroid.
Peanut is right Selenium is important and you should be able to get it from just eating 1 brazil nut daily. I have read that you shouldn't overdose on brazils though as they are rich in calories and there is a limit how much selenium you should take - no more than 2 brazils. Iodine is important too but in the right dose.I am lucky here in the UK our Vegan Society sell VEG1 which contains all the B12, D, Selenium anyone on a plant based diet needs.
So good information thanks a lot all what u say it happens to me the GP do nothing say keep levothyroxine and I have (hashimoto) from 2016 and they even don’t tell me
Yes I have educated true but 6 years make me so tired and sad when the dr tell u every thing is fain , normal, go to self help it make u confused in the end of the day am not dr and ull listen to them
Hi. I believe that all GP surgeries have Patient Access which is the system that ALL patients are entitled to join and it allows you to see and share your test results, book appointments etc. I set this up a few months ago. It involved picking up a form from the GP reception, filling it in and returning it to reception. It then took about 24 hrs to setup. I would recommend it as you can start to track your blood test results and go from there. I hope that this helps.
Not all the results get put on this patient access. Mine just came through and there is a lot missing. I will get my full results printed in order to get better answers. Others might have the same issue. I expect it will get better now that the GP’s systems are more computerised.
It was the same with me 20 years they have been telling me I was Hypothyroid it wasn't until I asked for the Thyroid Peroxidase test I found out that I have Hashimoto's it all new to me so working hard to find out what foods I now need to try to avoid to stop the antibodies destroying my thyroid further. My antibodies were 245 they should be below 5 u/Ml. I really don;t want to take their medications unless I have tried all else as I feel well surprisingly enough and if it wasn't for a routine blood test I wouldn't know I was in trouble. I have been following an organic plant based diet for 40 years and love cooking healthy food so think this has helped.
TSH and FT4 aren't the complete picture. You need FT3 testing at the same time to see if you are converting T4 to T3 well enough. Also you need Vit D, B12, Folate and Ferritin because optimal levels are needed for thyroid hormone to work properly.
If your GP can't get all these done for you then you can do what many of us do and that is a private test from one of our recommended labs, either fingerprick or venous blood draw.
Look at Medichecks Thyroid Check UltraVit or Blue Horizon Thyroid plus Eleven.
Post results, including reference ranges as they vary from lab to lab, and members will comment.
THANK YOU SO MUCH!!!! So I can get this tested by a fingerprick?? I have a phobia of blood tests, but of course they're essential which makes life difficult so being able to just have a finger prick instead would be LUXURY!
Thank you for all the info! I'm honestly shocked that no GP has ever provided me with as much info in almost 10 years, as what I have found on this site in about 10 minutes!!!! (No exaggeration!)
Right, I will get the ball rolling with getting these detailed tests done privately and will post my results as soon as I get them back! There is hope! Thank you again so much
Medichecks require 2 x microtainers each requiring 0.8ml blood. You need to prepare carefully so the blood flows well, if you do one ask on the forum for hints and tips.
Where in Manchester u do private blood test and how much cost? Do anyone do it?
Go online Blue Horizon they will help you with ordering the correctl test. I have mine done at the hospital. I only test once a year now.
The only time in my life that I put on weight was after my thyroid was removed and after only 7/8 months I had put on 10 lbs. Now I take NDT my health is good and my weight perfect. I am 72 years old.
I've had exactly the same problems with Levo and am currently not taking any.
I've been diagnosed with Hashimotos which is causing under active but i flatly refuse to take Levo again even though doctors say its not that causing the problems.
I never felt so bad in my life and i think it's totally messed me up as now I can't lose weight & feel awful.
I'm seeing a private Endo and trying hard to get NDT but he's not giving in - Yet!
Your TSH is high so you do need something, maybe ask your doctor for NDT, you might get lucky.
These grains (tablets) usually come from porcine (pig) thyroid, hence the Natural and they have the whole range of thyroid hormones that the body needs - T1, T2, T3, T4 etc. NDT has been around for over a hundred years, but like with T3, it almost impossible to try and get prescribed.
Hi, I asked two separate doctors for NDT and both said no way. My referral to an endo was rejected too so I'm literally just back at square 1.
I'm sorry that you're having the same issues! I have the exact same thoughts; I think levothyroxine has messed me up too because no matter how hard I try, I literally cannot lose weight- in fact I am steadily gaining! My Mum says I 'just' need to exercise every day (I'm currently exercising 4 times a week- 5km run and sit ups) and she said I should cut down my food even more (I'm eating 1,200 cals a day- the dietician said that's the minimum and I shouldn't go below.) It's so frustrating when people just don't understand.
Oh, I'm surprised the private endo is saying no to NDT, what do they say the reason is?
Interested in the timing - started when you were 16. I don't know whether there are other aspects of endocrine system(s) that could be involved - anyone else have thoughts on this? As, for instance, menopause can have an effect on weight gain. A d we've l heard of "puppy fat", which tends to go away in later years. Hope you find an answer.
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
just TSH and FT4 are completely inadequate
What were the actual results for Vitamin D and folate?
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 money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Is this how you did the test?
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's Extremely important to get TPO and TG thyroid antibodies tested at least once .
I've been on everything since Armour was reformulated but, same thing, constant weight gain. 68 pounds to be exact. I do see an endocrinologist but he has no idea whats going on. When my dose increases, so does my weight. I have been hypothyroid for 40 years and I've never had any problems with weight. I have always been at 110 pounds and now am between 170 and 175. I am so fed up with thyroid medication I have stopped taking it completely. If I start to lose weight, I will never go back to taking it. I've been on 5 grains Armour thyroid per day. I think you need both T3 and T4 as it sounds like you don't convert. Try natural porcine thyroid that has both t3 and t4.
I stopped taking it completely too, in the hope that I would lose weight but I didn't. After my blood test showed that I need to be taking something, I've started taking 50mcg levo again (less than the 100mcg I was taking during my 2 stone weight gain in 10 months) so far I have gained a few pounds over a month...whilst eating 1,200 cals a day and exercising often...there's clearly something not right.- WHERE IS THE FAT/ WEIGHT COMING FROM???
I'm not a great expert but have learnt lots in this forum. Apparently the weight we gain when hypothyroid isn't necessarily just normal fat - it something called mucin which we don't lose until we are properly medicated - and that means the painstaking and slow process of working out which medication suits us (levothyroxine, or NDT, or T3, or some combination of these), getting vits and mins optimal (not just in range), and making dietary changes to help improve out gut function and immune responses. In the meantime, eating too little can actually hinder our bodies' efforts to convert the T4 (thyroxine) to the active hormone T3 - and if we don't have enough T3, we won't be well. So a strict calorie counted diet may actually make it less likely that we lose weight, as it has a negative impact on our thyroid health. Instead of calorie counting, I am using Michael Moseley's Clever Guts Diet including drinking kefir and feel much better for it - and am hopeful that once I get my meds right, this way of eating will also help me lose weight. Others advocate paleo or keto diets; again, it's a matter of experimenting to see what works for you. Good luck.
Oh, and too much exercising can also use up too much of our precious T3, so the advice I've read on this forum is to stick to moderate exercise until we're optimally medicated.
Oh wow, this is new information to me but it makes sense!!! I'm glad actually as it was really tiring me out and demotivating me beyond belief! It's not maintainable or normal to live like this so I hope I can ease off and live more 'normally'!
You need to get full blood tests. Especially FT3 and both TPO and TG antibodies and all four vitamins
It's most common when hypothyroid to have it caused by autoimmune thyroid disease then vitamins are very very likely too low and very high percentage of us with Hashimoto's find strictly gluten free diet helps enormously or is essential.
Already tried that!! I went from 500 calories a day down to nothing more than water flavored with unsweetened flavoring. Still not one single pound lost. I did that for a week. I think they are putting fat retention in the thyroid medication these days because that is all I am reading lately, is how unhappy hypothyroid patients are. Something has changed and it's killing all of us suffering from hypothyroidism!!
Hi, I also took Levo for a year though had so many symptoms that after a year of treatment, I was bed bound. The Dr said I was fine and it must be depression, usual story as I realise now. I had gained weight and was very unhappy about my health as it wasn't depression. Because I didn't feel any better,the Endo instructed the Dr to stop prescribing Levo and just test in a year. After that, I got worse and worse with no thyroid help for further 9 years. No one tested my vitamins or told me that no thyroid medication at all will mean I go downhill. Went for years like this then last year reached rock bottom and despite eating small amounts, had gained 2.5 stone. In November, I tried NDT from Functional Dr and within one week I had sensation in my fingers and toes and began to warm up. Fast forward 8 months, I am now dealing with gut issues, low vitamins, oestrogen dominance and low cortisol and it is complex but I have lost 2 stone, have soft skin, no constipation, strong nails and new hair growth on my scalp. If I had listened to Drs and Endocrinologists, I believe I would now be dead but I am alive through my own hard work, research, lovely support groups and great books written by thyroid experts.
My advice would be take control yourself, find your own triggers and deficiencies, learn lots and bit by bit, you'll get there! Good luck!
UPDATE: I went to see a dermatologist about my thin hair and he said he will refer me to an endocrinologist...so fingers crossed, second time lucky they will actually accept the referral and we can get the ball rolling! I also requested a blood test to tests for the specific things you guys mentioned so hopefully I can get that done too!
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I have a phobia of blood tests, but of course they're essential which makes life difficult so being able to just have a finger prick instead would be LUXURY! 
Medichecks Results Interpretation help
support if possible
Still having symptoms of hypothyroidism despite medication - any advice?
Please help, I don't know what to do!
TSH and T4 levels
