I’ve had some great advice on here before and hoping for more, please.
I’m having a pity party and need a plan to get back on track.
I started levothyroxine just over 2 years ago. For two years prior to that I was increasingly unwell but it took that long to convince GP to take me seriously and do blood test.
I think I have mild cognitive impairment. I can’t do the type of work I used to. Will that come back?
I feel I have been misled by health professionals. I have done the blood tests etc. Each time l ask here, then pass on your advice to GP who is always happy to do as you suggest, and they do blood tests and prescribe. Currently Vit D and folic acid. I feel improved for a while then go downhill. It’s a cycle. I tried to explain this. They said there is nothing sinister underlying.
I do take a multivitamin. I have explained this. I have also tried single vitamins. GP said not to do this. I have given up gluten.
Due to my current stats, I am not able to do all I should about learning about the vitamins.
This week I feel I will have to give up my professional job and find another type of work. I don’t know what would be suitable.
Prior to this I was a professional who powers through and never takes time off.
I am not coping with my home/garden/admin either. I tried taking time off and that’s better while I’m off but as soon as I go back to work it’s the same again.
Sorry for long moan. Very grateful for advice/suggestions. Thank you.
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Tired2022
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Ah I feel your pain. 18 months on ever increasing doses of levo and feeling worse than ever. Have you had any advice on your last blood tests? Have you had a full panel done?
I’m so sorry to hear that. I hope you can feel better soon.
I had blood tests done a few months ago. First the GP said ‘it’s not surprising you feel like this with so much on your plate’. So I beg for blood tests. Asked on here what was needed. It came back low folate and low Vit D.
The thing is I felt like this last Dec and was put on v high dose of abit D for month. Then maintenance dose and I felt better for a while.
When my test came back low, I asked what I am supposed to do if I take the maintenance dose but it’s not maintaining? Why is it not? They just said nothing sinister underlying. Here is a bigger dose Vit D. Run along!
I already cannot manage what used to be my daily life activities and have no capacity to get to grips with this.
I want to know whether this is my life now and I need to adapt or whether I need to fight and do more to restore myself and how/what. I’m feeling very down today. Sorry.
That's okay, I know exactly you feel. The best thing I did was take control myself. Get private (at home) blood tests and then supplement accordingly. Don't take the GPs word for you are fine! They told me my Ferritin wad fine at 22 (range starts at 21) and a million other things.
In terms of thyroid get yourself a full thyroid panel from somewhere like nedichecks or randox (offer on this weekend) so you know what your T4,T3, TSH are doing and then you can come back and ask for help with next steps. It sounds like you need to increase. What dose are you on?
I think I have not been taking it correctly though. I take it in the morning probably only 30 mins before breakfast.
She did my thyroid levels again. I’ll find them and post them. They are stable as memory serves. There are brief periods when I feel ok, but it seems so fragile and then something else is wrong. I guess that’s my thought. Is this the new normal? I will never feel well for long and now need to plan my life accordingly?
I'm in the same boat and I think it's because I don't convert t4 to t3 very well. You need to have t3 checked so you know the levels as this is the most important hormone. Have you tried taking your levo at bedtime? As long as it's at least 2 hours after food and away from other supplements. Many members prefer this and then you can eat as soon as you wake up
I think you need to get hold of actual results, not take GP's word for it. If you are anywhere in the range and the ranges are frequently very wide then Doctors will say you are fine.
They arent trained in nutrition or supplements and usually only prescribe measley doses for too short a time. I liken it to a bank account, if you only have £1 in an account its in range, ie not in the red but who wouldnt prefer to see £100 in there instead?
As hypos we need optimal amounts of ferritin, folate, vitamin D and B12, not just scraping along the bottom. Ditto your thyroid results. What your GP dismisses as fine and what they actually are can greatly vary. Also the NHS very often only tests TSH which is not adequate, we need TSH, FT4 and FT3 for a full picture.
You can sign up for the NHS app or request online medical record access via your surgery if you live in England. I think it might be different in other devolved nations like Wales though. And post your results so members can comment.
It’s dreadful to feel as you do. The mental anguish of not being able to do what you’ve always done is the worst sort of pain. Fortunately, I’d just retired from my very demanding professional job when thyroid cancer hit me. I then had to endure the rubbish comments of how it’s “the good cancer”.
It’s only the good cancer because the mortality rate is very low and that’s all that counts in the world of medicine. QoL is of no consequence
The same is true for anyone who suffers from thyroid disease. Doctors know very little about it and what they do know they don’t properly understand.
I can’t say that you shouldn’t bother to discuss any of this with your doctor. That would be improper and not in keeping with the spirit of this forum.
What I would say is listen to what is being said here. Look for commonalities in the comments.
There are many hundreds of active members here (not sure how many) whose collective experience and wisdom would put most medical schools to shame. There are many inactive or past members who no longer post because they feel better.
The more information you can share, the more help you’ll get. No one is qualified to advise but be certain that everyone will help and support.
Could you start with your latest blood results? Blood tests don’t tell us how you feel as this isn’t a numbers game - but they are a start 😉
I feel for you. I no longer work doing what I loved so much. I think mine is a mixture of things. The first one definitely perimenopause and now I'm post menopause, and secondly not being on optimal thyroid medication dose. I've had memory issues since I was 38, that was the start of things going wrong. I've had early onset dementia ruled out thankfully.You say you are not taking your t4 correctly, that can have a massive impact so definitely take an hour away from your morning cuppa and breakfast.
If you are in your 40's and not looked into perimenopause then I would read up.
sparkly Your post has prompted me to remind members that they mustn’t put down every sign and symptom to thyroid issues.
I know that it’s tempting to make assumptions and keep tinkering with hormones, vitamins etc - but sometimes it just leads to other non-endocrine issues being missed
Thank you. I am sorry that you have had to give up the work you loved, I hope you have found something else that makes you fulfilled.
I have looked at some perimenopause/menopause information. I thought I was menopausal because of my symptoms before I had the thyroid diagnosis. Like I developed tennis elbow and joint pain as well as fatigue and brain fog, but these have all improved when I have been able to get the thyroid and vitamins back in range. When they come back, that's when I go to the GP again. I don't know how to unpick it or who to see about it.
I'm sure I could get HRT if I wanted, but it seemed better to optimise the thyroid and vitamins and then see what's left. However, this approach isn't really working for me at present.
First of all, never ever take nutritional advice from a doctor. They know nothing about it. They don't learn about it in med school and it's not their job. But, as they think they know everything about everything - except whatever is wrong with you - they feel free to dish out advice like gurus.
Did you GP tell you to take the multi-vit? It really is the wrong thing to take. If it contains iodine it could be that that is making you feel unwell. And, if it contains iron, that will block absorption of most of the other ingredients. And so many other things wrong with multis, it's just throwing money down the drain.
Currently Vit D and folic acid. I feel improved for a while then go downhill.
Well, that does't surprise me. Taking Vit D without magnesium is going to deplete your magnesium and make you feel worse. Nothing is going to help unless you take the cofactors with it. Magnesium is needed to convert vit D to the form that your body can use. So, you would have been ok on it until the magnesium ran out. What's more, low magnesium will make you feel bad. You also need to take vit K2-MK7 with vit D.
Folic acid is synthetic folate and not well absorbed by the body. You would do better with methylfolate.
Falate works with B12 so have you had your B12 tested? What were the results? In fact, all the Bs work together so just taking one isolated B vit is not going to do much for you. You'd be better off with a B complex.
They said there is nothing sinister underlying.
Well, that's a good get out for doing nothing! I don't suppose there is anything sinister but there has to be something wrong. And it's supposed to be their job to find out what and fix it.
Your underlying problem, as I see it, is that you're hypo and never been properly tested, so they have no idea what is actually wrong. Just testing TSH tells you nothing at all. But, being hypo will cause low stomach acid, meaning you have trouble digesting your food and absorbing nutrients.
So they could:
a) test your FT4 at least, ideally FT3 as well
b) get you on the correct dose so that you're no-longer hypo
c) mug up on how to effectively treat nutritional deficiencies
d) prescribe the correct form on nutrients.
Although, to be honest, you're probably better off dealing with the last two points yourself because they're never going to learb.
And you'd probably do better if you got a full thyroid panel done privately, because they're never going to do that, either. You want:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin.
Zinc as well if possible;
I feel improved for a while then go downhill. It’s a cycle.
Is this true with levo, too? If so, that's perfectly normal, and it just means you are ready for the next increase in dose.
You don't have to learn everything about vitamins by heart. That is not the most important. The most important is knowing where to find answers when you need them. So, when you have questions about nutrition, ask here and then you will always have the answers to hand in your profile:
Thanks so much. I have put my NHS blood results below.
I am needle phobic and I have had EMDR to be able to do the blood tests in clinic. I can't imagine doing a DIY blood test. Getting blood tests done are a massive deal for me and if I have them privately, I won't be able to interpret the results. Do you think a private GP would be a good way forward?
Depends on the private GP. They don't necessarily know any more than and NHS GP.
You don't have to take your own blood for a private test. There are places you can go to get it taken for you. And it doesn't matter if you can't interpret the results. We can do it for you.
So, are you still on a gluten-free diet? Is it helping? Never mind what was what in your old life, it's what's happening now that counts.
I think you're over complicating things with the single supplements. There are just three things to remember:
- Most supplements should be taken at least two hours away from thyroid hormone
- Iron, calcium, magnesium and vit D should be taken at least four hours away from thyroid hormone
- Iron should be taken at least two hours away from everything else except vit C (because of its blocking action), and it is vital to take vit C with iron to help with absorption.
Apart from that, you can take what you like with what you like. But when you take a multi-vit, everything is taken together, so how is that supposed to help? You don't absorb anything much except iron. And if it contains calcium, the iron and the calcium will bind together and you won't absorb the iron, either!
But, make it simple for yourself. From your results below I see that your folate is verylow, and your B12 is high. Your B12 is high because your folate is low - as I said, they work together. I would suggest you take a B complex with all the Bs in it PLUS a methylfolate supplement. You can take that at the same time as your vit D and magnesium - do you have a form of vit D supplement that includes vit K2? If not, you'll have to get the K2 separately. Is your vit D in a pill or an oil-filled capsule?
So, just concentrate on those for the time being, get those levels up. Your ferritin looks good, but we also need to see and inflammation marker - CRP or something. Because high levels of inflammation will give you a false high ferritin result.
So, the September results are pretty useless as far as thyroid goes. Just knowing that your TSH is 1.03 tells you nothing. So, you're completely in the dark about your thyroid status, but 100 mcg levo is not a high dose, you probably need another increase.
Do you realise you have Hashi's? Do you know what that involves?
As for the GP that laughed at you! You should have reported him to the practice manager for unprofessional behaviour. Doctors are not supposed to laugh at their patients! That is so rude!!!
But, no, I doubt if you have dementia, you just have idiot doctors who aren't treating your hypo correctly. As you have Hashi's, you are probably a poor converter, so your FT3 is probably low. The brain needs lots of T3, and without it, all sorts of brain-related symptoms will appear. But as the FT3 is rarely tested, doctors wouldn't know about that. Which is why we have to get proactive. It doesn't matter that you don't understand your blood test results - why should you? It's not your job. And those whose job it is know nothing about it. But we know, and we're always here to help you. You just have to ask.
<5? How much < than 5? I do wish the wouldn't do that. It might be 0 or it might be 4.9, both are below 5, but the former would be a much better result than the latter. So, that doesn't tell us much.
Don't like the sound of your 'energy' supplement. Sounds like Barrocca and that's rubbish! It won't give you any energy if your thyroid hormones are low. That's not how it works. So, yes, best to stop that.
I'm not well up on vit D, so I would suggest your write a new post giving your dose, and the blood test result and ask if you're taking enough, because as I said, you can't trust doctors where nutrition is concerned.
Thank you. That's so helpful. I will write my blood results below.
The main problem I have is that before my diagnosis, I lived a healthy lifestyle and had no health problems, naturally slim. I did not realise how much I took it for granted. I never took vitamins as I felt you should get them from your diet. Never needed weight loss diet and never believed in "faddy" gluten free diets unless you were celiac or something. So I'm on a massive learning curve when my brain and concentration won't work.
I was converted when a gluten free diet unexpectedly cleared my brain fog (but still not back to baseline). I did try taking single vitamins, but it got so complicated. Some x hours before food, some x hours after food, some should be taken together, some should be taken apart. I gave up and took the multivitamin.
In view of other causes, I am 50. I am from a family who still had babies when in their 40s so when they did the blood test for menopause hormones, I came out as not menopausal. I think all my issues started when I had my first mirena coil in Oct 2019. Things got worse and worse from there.
When I had my bloods taken in Feb 2024, I was on 75mcg Levo and this was increased to 100 in April 2024.
My most recent blood tests from September 2024 are:
Total 250H Vitamin D 18.5 nmol/L; 25OH Vitamin D <25 nmol/L is consistent with deficiency.
I started Levo 75 in Nov 2022.
I'm really sorry. I just look at these and get bamboozled because I can see if something is in range or not, but I don't know what any of it actually means or how it links together.
In 2022, I told the GP that I thought I had dementia and he literally laughed at me. I had reminders on my phone throughout the day like "7am have breakfast" or I couldn't get off the sofa.
I don't have any reminders on my phone now but I'm holding on to my job with the tips of my fingernails and so I need to find some kind of solution (to get better or to look for other work).
Thank you if you have read this far and I am so grateful for all the support. The NHS web page just seems to say take the levo and carry on with your old life as if nothing has happened.
The NHS and tbh other health care systems dont view hypo as serious,because for them its not. They dole out these little white pills ( albeit sometimes begrudgingly), give us a blood test a few weeks or months later and once our TSH is in range then rejoice!
You are healed. If you go back complaining of weight gain, fatigue, brain fog, depression, anxiety or just not feeling yourself they dismiss us as hypochondriacs, or tell us we need antidepressants. Or blame our age. It could never be because for some Levothyroxine isnt working or they arent on enough of it, or their nutrients are low.
And unfortunately there must be many hypo patients out there wondering why, in spite of being on Levo and told by their GP that their results are " fine", they still feel like poo. And many will just resign themselves to feeling that way. Its not until they join forums like this that they realise it doesnt have to be like that.
Thank you. I really hope it doesn't have to be like this.
They offered me sertraline at first (I wasn't depressed) and I had to ASK for a blood test for thyroid (it runs in my family and the penny dropped for me one day). Then it took me several months to actually get the blood test done as I was so bad with blood tests. I will do all the blood tests now, if it will get it sorted out.
I’m not going to ‘pick’ on everything as that will drain your concentration. There’s a few thing to pick on though
Has your ‘laughing doctor’ picked up your high ferritin? Are you taking iron as a supplement? High ferritin is an inflammation marker as well as an indicator of iron overload (Haemochromatosis)
Symptoms are various but fatigue is predominant symptom - with brain fog and confusion also on quite a long list
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