In 2016 I was found to have had an abnormal thyroid function - my TSH was raised to 6.77 and a Free T4 of 13.9. After being put on 50mcg of Levothyroxine I lost a lot of weight.
Since then the weight has come back very slowly. I really struggle with losing weight. I saw a private doctor in London who told me I had subclinical hypothyroidism and so the weight gain would not be to do with that. Is this true? She told me I was clinically euthyroid.
I had tests done in Jan 2020 and my TSH level was 1.26. Could anyone please comment on this?
I have been left in the dark by my private doctor who has not contacted me after stating she would. I would like to know once and for all if I have serious hypothyroidism and if it is impossible for me to lose weight.
I would appreciate any comment.
Thank you
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Cepayne98
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It's possible - but difficult - to lose weight if you're hypo. You need your meds to be optimised, your key nutrients to be good and your free T3 to be nice and high. And then, obv, to eat sensibly - good fresh-cooked meals. Don't do diet shakes which are usually soy-based (no good if you're hypo)
Do you have full blood results (and ranges) to share - just TSH isn't really enough
I'd recommend you get full testing done - TSH, free T3, free T4, thyroid antibodies, ferritn, folate, vit D and B12. You will see posts here about private testing and Medichecks usually has discounts on a Thursday. SeasideSusie has posted (as replies to other posts) how best to do a home blood test - if you click on her profile page and look at her replies you will find them there.
As regards actually losing weight, some people have found the 5:2 works. I have been doing the Intermittent Fasting thing for nearly two years - where you eat all your calories within a restricted time window, in my case, between midday and 7pm. It's now a way of life rather than a diet as such. And it keeps my weight stable.
Low calorie diets aren't a good idea, as your T3 needs calories to work properly. But really, it's about eating sensibly; stopping the "empty calories" - booze, fizzy drinks, crisps, biscuits etc; and maximising those key nutrients.
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
Do you have Hashimoto’s?
Ask GP to test vitamin levels and antibodies if not been tested yet
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 as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Standard starter dose of levothyroxine is 50mcg (unless over 65 years old).
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
Low vitamin levels frequently results in low TSH
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
An optimally healthy TSH should be around 1 or under. You may have sub-clinical hypothyroidism now but it will get worse in the years to come. My TSH was also around the same level as yours (2.55) when I was around your age (21) and my FT4 was slightly low, my FT3 was near the lower end limit. It was obvious to any genuinely educated person on thyroid issues that I was a poor converter of T4 to T3 and was clearly hypo. I even had some pretty severe symptoms.
About 10 years later, my TSH was 6.27 and both my Free T4 and Free T3 levels were below the lower-end range limit. Symptoms had gotten considerably worse by then.
The first thing you need to know is that it's very hard to find a doctor that knows anything about thyroid. And, they don't like diagnosing it and they don't like treating it because they feel out of their depth. You were actually very lucky to get a diagnosis of hypo with a TSH of 6.77, because although that's over-range, the majority of NHS doctors like to wait until it gets to over 10 before they will diagnose. Who was it diagnosed you? The private doctor? Was the private doctor a GP or an endo? Just because a doctor is private, doesn't mean they know any more about anything than an NHS doctor - sometimes they know less!
I saw a private doctor in London who told me I had subclinical hypothyroidism and so the weight gain would not be to do with that. Is this true? She told me I was clinically euthyroid.
'Subclinical' is a term they usually use to fob patients off - they don't even use the term correctly. Was she referring to your blood test results at the time of diagnosis? Because a TSH of 6.77 is not subclinical, it is hypo. You are hypo when your TSH gets to 3. As for euthyroid, that would be a TSH of around 1 and FT4/3 around mid-range. BUT if your results looked like that, it was only because you were taking levo. Had you stopped the levo, your TSH would have risen and your Frees dropped. So, technically, that's not euthyroid. And, once you are hypo, you're probably going to need a lower TSH and higher Frees to be well, than a euthyroid person would. As for the weight-gain, if you put it on when you were hypo, and it was water-retention (mucin) rather than fat, then that would be very difficult to lose even when you do get your level optimised. So, she was totally wrong about that. But, her level of education in the subject did not permit her to understand all that.
I had tests done in Jan 2020 and my TSH level was 1.26. Could anyone please comment on this?
When in 2020? 1.26 could still be too high for you. But, a TSH reading on its own is meaningless. The three readings need to be considered together to see what's going on. TSH, FT4 and FT3. And, if you have a doctor that is dosing by the TSH, it's very unlikely that you will ever get completely well. The most important number is the FT3. Are you still only taking 50 mcg levo? If so, then the odds are very high that you are still under-medicated.
I have been left in the dark by my private doctor
I doubt you have been deliberately left in the dark, it's just that she doesn't know enough about thyroid to enlighten you. And, she's really not worth paying for. Why not cut your loses and find someone who actually knows something about it?
"I saw a private doctor in London who told me I had subclinical hypothyroidism and so the weight gain would not be to do with that"
HA!!!!! Of course weight gain is to do with it! I still felt unwell when my TSH was just under 3 from a maximum of just under 6.
I hate the term "Subclinical". Especially when you have very "Clinical" symptoms. You most likely need an increase in thyroxine, 50mcg is just a starting dose for most people. Most of us eventually need between 1-200 mcg.
Do you know what kind of hypothyroidism you have? The most common is the autoimmune form, often known as Hashimoto's, (meaning that your own immune system mistakenly attacks your thyroid).
Do you have any other symptoms? Hypothyroidism has a huge number of possible symptoms because the thyroid helps to control the working of almost every cell in the body.
This is a really good forum with some very knowledgeable and helpful people. Stick around, read and ask questions. Also study the Thyroid UK website, again a lot of advice and information.
After my thyroid was removed I gained 6 stone in 2 years, I kept a food dairy and my Dr didn't believe I could gain that much weight unless I was stuffing my face with pie and chips twice a day. I was sent to nhs dietician who said do not exceed 1000 calories, then she said 800 calories a day.
A friend who was type 1 diabetic told me about keto diet and he list a lot of weight. Nothing else worked so I gave it a go. I won't say it's easy as I'm not a big meat eater, I lost the 6 stone in 2 years. Never hungry I keep between 20-30 gms of carbs a day, however last summer I relaxed it to 50-70 carbs day, I became re addicted to bread and I gained 10kg in 5 months, gutted but I know it will come off when I get strict again. There is a good low carb group on health unlocked. X
1000 to 800 calories a day is below the lowest starting limit of 1200 calories a day which is usually only advised by nutritionists/dietitian under certain extreme circumstances. They prefer to start around the 1400 calorie mark.
Your dietitian was literally causing more damage to your metabolism and your body’s ability to effectively absorb thyroid hormone medication. Literally starvation, and starving oneself can have adverse effects. It will make our bodies hold onto fat and water even more and your metabolism slows down and your digestive/constipation issues increase, etc.
As for bread (and carbs in general), it’s really hard for me to give that up, too 😭 but I am pretty sure it’s the gluten that causes the drastic weight gain because it messes up our guts, giving us leaky gut and poor digestion/water retention.
LOL I know, I told her she had no idea what she was talking about. I am an ex sports woman who has been interested in nutrition since the early 80's. I had always been very strong and 8-9 stone, so such a massive weight gain was hard for me to cope with (physically and mentally) what makes me laugh is that dietitian is paid a jolly good salary by us tax payers. She had no idea about weight gain/thyroid connection, gluten sensitivity, menopause, metabolic syndrome/refined carbs, just calories in and calories out (even that she could not work out resting metabolic rate) usual NHS rubbish.
Those are usually the emotions we go through with idiotic nutritionists/doctors, lol.
*edit: by the way, when I was on a good batch of Nature-throid NDT before reformulation (in my early twenties), I was consuming about 2000 to 2500 calories a day, with moderate regular exercise, and was still able to lose excess weight and maintain a healthy one. Just goes to show how effectively a good thyroid medication can help. I didn’t have any hyper symptoms, my metabolism/digestion/body was just functioning optimally.
Thank you so much for replying to my post. I did not expect any replies so this is great!
When I was first diagnosed it was by my GP in 2016. I took Levothyroxine and lost a fair bit of weight within the next 5 months or so.
My mum has done a great amount of research on this condition and has always stressed that there is not a huge amount of help by the NHS and other things need to be treated.
In my test results in January this year, I was found to have a Vitamin D deficiency which I have been medicated for and actually feel a huge difference in my energy levels.
I had ferritin tested and this was 40 ug/L
I have ordered the test on the website suggested to me earlier in this post which covers all of the other things that need to be tested ie T3 T4 b12 antibodies etc.
I am hoping because I lost Weight before I will be able to again. I haven’t had the BEST diet and lifestyle in the last year so I want to pursue with that. But it will be great to see what the results come up with.
If ok, I will post my results when they come back in this thread.
Another note, I have never been told I have hashimoto’s. My symptoms have been awful until recently where I have been exercising a lot and eating better. I don’t feel that tired anymore and never have brain fog. I have dry skin but have always had that.
Does anyone have any suggestions for any brilliant specialists that I can book an appointment with once these results come back? To be able to move to the next stage!
Did you actually have an antibody test to comfirm you have Hashimoto’s? There are other causes. I would ask your GP receptionist for your results that confirm this. My trust in them has waned for good reason sadly.
I put on 20 kgs and had all sorts of other ailments before diagnosis 18 mnths ago and when I was then described as ‘subclinical’. So that term I think is cruel. I have lost most of the weight now but on equivalent of more than 150 Levo so I was actually fully Hypo.
Your nutrition has to be really good and I supplement a lot. Its great youre having the above tests and then you can post on here for advise again.
My heart goes out to you, being so young. I wish you all the best x
As far as I understand it, unexplained weight gain can be a symptoms of hypothyroidism. Unfortunately, the medical professionals seem to think it is because too much food is eaten.
Hypo - means low and thyroidism means a problem with the thyroid gland. So hypo-thyroidism.
If we aren't given a sufficient dose of thyroid hormone replacements, weight can be gained, but weight gain is then blamed upon the patient and that it is the patients' fault.
The majority of medical personnel assume it is because we eat too much as they have no knowledge about the purpose of thyroid hormones.
Once-upon-a-time we were all diagnosed upon our clinical symptoms alone (NHS wouldn't spend as much on blood tests if that was still the case). We were then given a trial of NDT (natural thyroid hormones). These have now been withdrawn from being prescribed due to misinformation by the British Thyroid Association, despite it being the only replacement since 1892 onwards and not many patients seemed to recover. Probably because it contained all of the hormones a healthy gland would have.
If it is good enough for Mrs Clinton and Oprah Winfrey???
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