So recently tsh was 4.43 range 0.35 - 4.94, so doctor said your thyroid is back to normal, I argued that I was still at the upper end of the range and convinced this was causing my low mood and anxiety. I asked for more levothyroxine but he declined, I still argued with him and he did more bloods and agreed if my levels came back around the same he would humour me and allow an increase, but new bloods came back at around 3.54 which he says are perfect and won't be doing anything just leaving me at my current dose 75mcgs a day. Still waiting to see an endo since December even privately. My b12 was 159 range 150 to 440, I started supplement with a spray of 1200mg a day but my b12 showed back down to 120 which doctor still didn't bat an eyelid. Also my vitamin D is still the same at 39 which is insufficient. He said just keep taking the 800 iu a day, which did nothing for me before. I'm just going round in circles, I really think my low mood is to do with all this. Also supplementing with selenium and zinc. Anybody have a similar experience with low mood or depression with in range tsh levels?
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It's not even so much your TSH but your FT3 the active hormone that the NHS doesn't even test.
Have you tried asking a different more helpful doctor at the same practice?
Your TSH needs to be at or just under 1 for most people to feel well.
What has happened about your very low B12 results? Are you vegan or vegetarian?
You had some very good advice here about your vitamin levels. You will have to take charge of at least you vit D and buy it yourself along with K2. healthunlocked.com/thyroidu...
Yes I keep telling him my tsh is too high, he was checking T3 at the start but then stopped, I feel he just doesn't know anything about it and just reverts back to tsh is best! He never saw that my b12 was low at all. I took it upon myself to supplement as he wouldn't entertain it, I am not vegan or vegetarian. Yes I did receive good advice, for some reason b12 has dropped since supplementing. Oh its like never ending.
Far from it! Your thyroid will never be 'normal' again. You have hypothyroidism. Thyroids don't regenerate, and the only reason your TSH has come back into the stupid range is because you're taking levo. But, to feel well, you need to take enough of it to feel well. And your TSH is saying you aren't taking enough.
A 'normal' - or euthyroid (i.e. no thyroid problems) - is around 1, no higher than 2 and at 3 you are hypo. And for most hypo people it isn't good enough to just back the TSH back to euthyroid levels, they usually need it lower. So, at 3.54 you are still hypo. Were both these tests done early morning, after fasting over-night?
The brain needs a lot of thyroid hormone - T3 - or you can have a lot of brain-related symptoms like depression, anxiety, etc. But, it's isn't the TSH itself causing those problems, it doesn't cause any symptoms. It's the low T3. And, when T3 is low, your TSH is high. That's the way it works. This doctor obviously knows next to nothing about thyroid!
Was your B12 test an active test or serum? Because that's a very strange range.
Oh greygoose, I wish you were my doctor, he is such a good gp but all this thyroid stuff just goes over his head. He looks at me like I've 2 heads when I talk about it, he thinks the low moods and anxiety are nothing to do with my thyroid and more phycological so he sent me to a phycologist which isn't really helping. I refuse to go on anti depressants. And of course he stopped checking t3 because my thyroid is perfect now! Yes tsh first thing in morning and meds 24hrs before. I so nearly had him for an increase and then the bloody tsh dropped! B12 was serum 120 checked again range is 120 - 650
OK, so your B12 is really low, and your doctor should be testing you for Pernicious Anemia - except that you're already taking B12 so I don't know how that would work. I would suggest you ask the question on the Pernicious Anemia forum:
If GP won’t test then you will need to self supplement a GOOD QUALITY B12 and……after 2 weeks add a separate vitamin B complex
If GP agrees to B12 injections…..start Vitamin B complex 2 weeks after first B12 injection
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a start a separate vitamin B Complex after 2 weeks
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow Methyl folate 400mcg) and continue separate B12
Hi SlowDragon, nope not vegetarian or vegan, he won't test for pa as he says my b12 is fine! It's very hard to change your gp in Ireland. I'm waiting to see an endo privately since December, gp says they might not see me for a long time because my levels are perfect! I'm taking brand Eltroxin.
what I did was took more meds then when I went back for retesting could say “well I felt so bad I decided to experiment to see if additional meds helped - and I can confirm that they have and look my levels are all still in range. Statistically speaking most are well within that range but individuals naturally may need to be in a specific place in that range or slightly outside it even to be well - as you know, Doctor, these statistically derived ranges are only correct for 80% of the population of course… and the aim here is to make me as symptom free as possibly not to get me to a certain number…” (yes I do lecture my docs but do it nicely as if I am trying to help! Lol)
you can source Levo and lio fairly cheaply and readily I believe but I actually just made sure I reordered meds a bit sooner - it’s only a few extra pills. Don’t know what you’re on but don’t obviously add in tons extra but say 25 extra Levo or 5 extra lio.
I suggest to take a private test for the DIO2 genetic mutation which may indicate insufficient conversion of T4 to T3. Regenerus Labs in the UK arrange the test.
I have been where you are, terrible, terrible depression and anxiety, honestly I didn't want to be here. I have given up going to my GP they are useless regarding thyroid issues. Thanks to the advice on this site I have been working on getting my vitamin levels up and have been self medicating with some NDT alongside my levo. I pay for my own blood tests through medichecks. I am slowly improving, I'm not great but much better than I was. It's been a hard journey. (I've also recently started HRT as I'm peri which has been making things worse) hoping for better days for you x
A TSH above 2.5 is too high and you’ll have hypo symptoms. My private only endocrinologist explained this to me. Best TSH place to be is around 1.00. Your GP is just looking at NHS ranges which are set too wide. Gp’s know nothing about thyroid conditions. They aren’t trained in it. They just follow ranges. You need to see a private only endocrinologist ( no NHS involvement). I keep my TSH around 1.00 and my T4 and T3 levels are usually midway without ingesting my meds before the blood draw. The only way you’re going to feel better is by taking more thyroxine. Do it slowly. Check your T3 levels also. Do it privately through monitor my health then take copies to your GP and endocrinologist. Get those copies scanned onto your NHS file.
They haven't a clue, I'm in Ireland so it seems we are pretty much the same as the UK, its like please stop blaming your thyroid, your just a bit depressed, your levels are perfect!
Your doctor is incompetent- if you need Levothyroxine and have hypothyroidism you need a full replacement dose - unless of course you are a teeny tiny person weighing about 2 1/2 stone then you will be fine.
There is a pinned post NHS and NICE guidelines the useful bits - have a read and if you click on my face it will take you to my profile and especially my bio. I too was put on 25ug and made very ill.
When you feel you are ready start a fresh post but the advice above is gold - this forum literally saved my life. 🤗
Low vit D levels made a huge difference to my mood.
I was at 37 nmol/L ( TSH within range), doctor prescribed 40.000 iU per week. I’m at 80nmol/L now, so not quite there yet. But my mood has improved so much. Which happened after 2-4 weeks. I cried the first time I played music and actually FELT the joy. Instead of thinking this is/ should be fun. I also feel less overwhelmed, no feelings of doom and so much more energy.
I’m surprised. I believe there’s clear advice on vit D deficiency and treatment. I have not heard it before where a doctor resisted treating it. If your levels are still low, it should be clear supplements are not high enough.
If they don’t listen, I would consider asking another doctor.
I’m not sure about brand of doctor. Sorry. Now I take d3 from Holland and Barrett.
He just says that I'm at 39 and I should be on 50, so just keeping taking the 800 a day, which is funny because November he checked it and I was 38 and supplementing since then and its only changed but one but he's not worried about it! I'm going to have to starting taking more myself.
What a charlatan!!!!!! With a TSH that high of course you'll be feeling low.
According to a letter I received that was from an NHS endocrinologist to my GP when I was first diagnosed, the goal of thyroid hormone replacement is to normalise symptoms and bring TSH below 2 and for some people much lower than that. He has not done that, so yes, you are under-treated. 75mcg is a very low dose for most people – it's one step up from the starter dose.
I know it's so frustrating, I just don't know what to say to him anymore, I'm in Ireland and I'm waiting to see en endo privately since December. Also terrified he will have the same views at my gp just can't win.
I used advice from these guys to get well - your TSH is too high for someone on Levothyroxine. Dosing by weight got me to a full therapeutic dose but my TSH will never agree with my thyroid hormone levels so I am accepting a risk, which at this stage, having read the low quality research these protocols are based on I consider negligible/ nonexistent compared to risks of being under medicated. This way at least I get to live a full life.
The Doctors would have happily under medicated me to satisfy their obsession with TSH. TSH is a pituitary hormone subject to interference, not a thyroid hormone. 🙄
On first scientific principles it is ludicrous to use an indirect measure to manage hypothyroidism. It has some use in diagnosis of autoimmune (Hashimoto’s) thyroiditis, but even then misses cases, but absolutely cannot be relied upon to treat hypothyroidism.
There are symptoms and two perfectly good thyroid hormones that can be measured to do this.
Click on my face and you can read my profiles which I wrote as a case study to help others.
Thank you very much, I'm at my witts end here, physically I am actually great but mentally I'm just not the same person. 2014 I was diagnosed and resting dose for about 5 years was 125 then down to 100, then got covid last year after that I went Hyper and was never the same again, now on 75mcg with depression and anxiety and they think I'm perfect!
All I can say is when you relaying how you feel don’t use the word ’feel’. It is a trigger to them to turn off. I discussed my symptoms in a very dispassionate way and discussed the history of symptoms, medication changes and blood tests with my assessment of what needed to be done to attain optimal rather than just being drop kicked into the range. Where you sit in the range is relevant and with Hashimoto’s you can have flare ups that lead to highs and lows of thyroid hormone levels. If you never have I would read round that a bit because it is highly unlikely the doctors you are dealing with are very well versed. 😊👍. I made some self advocacy posts that I did as an example.
Unfortunately your Endo will be of no help either. They all play by the same playbook which does not properly address hypothyroidism. I could go on and on about what to do to fix yourself but
**** the absolute BEST way for you to understand ALL that you need to know is to read either of two books (both would be better!): Stop the Thyroid Madness by Janie A Bowthorpe (US) and/or The Thyroid Patient’s Manual by Paul Robinson (UK).
They both explain extremely well how modern medicine is absolutely failing hypothyroid patients and how to REALLY treat it.
I followed their advice and fixed my son’s hyperthyroidism after more than 10 years of following his many doctors’ poor advice which only included treating with T4, which actually made his tiredness and depression WORSE!
The advice already given to your question is all very good but these books will put it all into perspective and help you understand the exact steps to follow to fix yourself.
Andy in the US
PS: Your B12 level is atrocious! Methylcobalamin is the best B12 to take as it is the best absorbed. Take 2500 to 5000mcg daily until your B12 level hits range high.
I am new to the thyroid forum but I've been a member of the B12 deficiency/pernicious anemia forum for about a year. I've learned a lot about B12 PA, but I'm just starting to learn about thyroid. The reason I'm commenting is because on the B12 forum a lot of them talk about having thyroid issues as well. We all inject B12 because we can't absorb it unless you're a vegetarian. That's a whole different story. But for most of us over on the B12 forum we can't absorb B12, taking it sublingually, so we have to get injections. If you're B12 is that low you have a serious B12 deficiency and that would definitely cause your depression anxiety, peripheral neuropathy, and a multitude of things that actually are shared with thyroid issues. You might want to traips on over to the pernicious anemia forum and see if you could ask a couple questions there. They're all very helpful very kind and have been lifesavers for me. But I would not be surprised if perhaps you had a B12 deficiency and maybe weren't able to absorb B12 in your gut. There's some tests that you can have run for that. One is an IFAB test that's an intrinsic factor antibody test. If you have antibodies then they've taken over your intrinsic factor protein and you can no longer absorb B12 so if I was you I would go and have some more test done for autoimmune B12 deficiency. You don't necessarily have to have full-blown pernicious anemia to be unable to absorb B12. Some of the tests you should have run are MMA, homocysteine, B12 and your folate which you already have, an MCV MPV and MCH those will tell you how big or small your red blood cells are and how many you have, etc.
I was blaming everything on my pernicious anemia, then I asked the question here about the numbers for my TSH and everybody agreed that I'm struggling with my thyroid and that I needed to have more testing done, which I just had done today, so I'm waiting for those results. But I was blaming my peripheral neuropathy on B12 strictly, so I'm very hopeful that if they'll give me thyroid meds that maybe it will help my feet and my legs.
Your B12 is very low and that's going to cause some pretty horrendous symptoms piled on top of the ones you probably have because of your thyroid issues, and you're probably very miserable. I'm really sorry about that. But there is hope. Good luck to you.
I have read that sublingual B12 (like sublingual Methylcobalamin I mentioned in my earlier post) bypasses the gut and is absorbed straight into the bloodstream under the tongue. Is that not correct?
In order for B12 to be absorbed it has to bind to a protein called intrinsic factor. Your parietal cells in your upper gut create intrinsic factor, and when those are damaged as mine are you no longer make intrinsic factor. So when you eat meat or animal by-products or take B12 supplements, a healthy persons intrinsic factor protein will bind to the B12 and it will carry it down into the lower ilium of your gut to be absorbed. If you don't have intrinsic factor to carry that B12 down to your ilium then you can't absorb B12. I believe it's 1.8% of the sublingual B12 that is taken can be absorbed. Methyl cobalamin B12 is the best one to get and a lot of people say that you can take lozenges or drops or even sprays. But it's my understanding, and you could double check on the pernicious anemia forum that only 1.8% of that can get absorbed. So we all inject. The people who take it sublingually also inject they just take the sublingual to try and get through in between injections. It's very complicated just like the thyroid issue is and they often run together. In fact I am one of those people who have both now. So I'm struggling with what illness is causing what symptoms because they overlap. Or are they both causing the same symptoms? I don't know. Hypothyroidism is all new to me.
If you're not a vegetarian and your B12 is as low as it is, then you need to do some further testing to find out why you're not absorbing B12. It's very important. B12 makes your very DNA, it makes red blood cells that carry oxygen to every cell in your body, and it keeps the myelination on your nerves healthy. Without B12, demyelination starts and pain starts to happen everywhere especially in the feet and hands and lower legs. Low B12 causes depression, it causes anxiety insomnia, a fogginess in the brain, untreated for decades, it can lead to dementia and worse, it's a very serious issue and a lot of people with thyroid issues have it. I would go over to the B12 forum and ask the question about sublingual absorption. There's a member on there named Technoid they're very well trained in nutrition, they could really help you and probably will. Let them know your thyroid issues, because many many of them have the same issue, many of them have hashimoto's, so they're very well versed in B12 and thyroid so they can really help you over there. I believe the 1.8% absorption is accurate, but no harm in double checking.
A very important thing to remember before you get any testing done to get the intrinsic factor test and other B12 tests like MMA and homocysteine and all that you really should not have any B12 supplements in your body. If you only take sublingual B12, I think two weeks without B12 would be enough to refrain from taking it before tests. If somebody's injecting B12 that would be much longer. Taking B12 supplements before an intrinsic factor test will make it inaccurate and that's a very important test.
Great response! This is for my son. He had very low B12 and started sublingual methylcobalamin which raised his B12 to range high so he apparently doesn’t have an intrinsic factor problem. He does have hypothyroidism 5very poor T4 to T3 conversion) and straight T3 has helped immensely.
Thank you. I'm very glad you found it helpful. I'm just finding out I have hypothyroidism. So it is all new to me. But I've had it a very long time. I'm a little worried about permanent nerve damage in my feet.
Good luck to your son I sure hope that everything works out for him. It's important that he keeps his B12 up. Everyday. Keep in mind if he takes sublingual B12 and after a few months, if it's B12 still isn't up high enough he might be having an absorption problem. Just keep an eye on it. Good luck to you.
Have you considered getting a new doctor? Is he/she doing a full thyroid panel? Tsh can show normal for years while you have raging thyroiditis. Tsh alone is only good for monitoring your condition after it has been thoroughly
Yes lower mood, more pendulum swings, higher weight now which brings me around the loop again. I used to be taking 175mcg and that was great. I had more energy and I could easily fit into size 10 and even size 8 which further kept my self esteem high and my depression low. Now I take 100mcg.
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