Hello. I’ve had hypothyroidism for 19 years and it goes rogue every few years. My last results read
Serum TSH Level 9.07
Serum Free T4 Level 22.5
Vitamin B12 2362
I’m on 150mcg thyroxine week days and 175mcg Saturday and Sundays. Am not taking any supplements and vitamin B12 been over 2000 for years with no explanation. I’m sick of feeling rubbish. I’m just looking into seeing someone privately who can maybe help me with thyroid, menopause and vitamin b12 but hope someone on here might help me too?
Many thanks and sorry if this question comes up lots, I’ve searched but can’t find much.
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Princesspeach128
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Thank you for your reply. I’ve felt fairly rubbish for years. I keep going back to doctors saying I could just lie down in traffic and go to sleep during the day I’m so tired and I struggle to remember my own name some days. I’ve been referred to endocrinologist a couple times and just told it’s all fine and shove off basically.
My vitamin b12 was investigated a few years ago and just came back with a response of “don’t know, don’t worry about it, it can’t be serious or I wouldn’t still be here”.
My vitamin b12 was investigated a few years ago and just came back with a response of “don’t know, don’t worry about it, it can’t be serious or I wouldn’t still be here”.
Good grief! Can’t believe a medic would say such a thing to someone - but then again, why am I not surprised? OMG - the stories on here about what has been said to patients never ceases to amaze me! 🤸🏿♀️🥛
Im severely malnourished due to Sibo and gut issues and my gp told me oh your just skinny the wanted to give me anti depressants and sign me up to the gym I'm afraid they don't know very much .Ive just been in hospital and the consultant registrar said hes got to be kidding your 5 st 12🙄
Get a copy of your blood test results from the endocrinologist, they will almost certainly include fT3. The doctors response is reckless (against GMC rules), there can be causes of excess B12 but I don't have knowledge in this area. It might be worthwhile getting a private blood test for TSH, fT3, fT4. It's not worth spending money on other things such as antibodies but if they are included at minimal cost there's no harm in getting them.
Thank you. I’ve booked myself in for Friday. Looks like a good guy and hopefully will shed some light on what my body is playing at and get me back on track (although I feel like i derailed many years ago so hope it won’t take as long to turn things around).
Thank you for your help. It’s mucn appreciated. I’ll report back with anything helpful.
your post sounds just like my life. i have been treated the exact same. i get my results today and then i am going to take the advice on here and go privately
Hi. I too have had Hashimotos for over a decade my levels would go off kilter every year and generally never felt like I use to. I had to keep lowering my Levothyroxine dose from 125mcg daily down to 75mcg daily over the years as my TSH was always too high.
My GP never checked my T3 in 12 years. Last year I had it checked for first time. It was low. I went private and it’s been confirmed that I’m not converting T4 to T3 very well. After a long struggle and horrible year with my health my private Endocrinologist prescribed me Liothyronine T3. I received it last week already I feel a huge difference. I will have some fine tuning but so far it’s improved my life dramatically.
I’d suggest you get yours checked ask your GP first. If your T4 is at or over the top of the range and your TSH is still too high then it’s more than likely that you have low T3. T4 is just stored in your body waiting to be converted to T3 which is the only active hormone to give you energy. It’s worth checking your cortisol too. As low cortisol can make you very tired. This should be done at 9am. Cortisol and thyroid are closely linked. When my T4 was too high my cortisol was very low.
Sorry I can’t comment on high B12. I had low B12 now on 3 monthly injections. My levels have gone up from 132 to 1500 on injections. I asked if this was ok atvthis high level. My GP told me not to worry about it being high as it’s water based and your body gets rid of what it doesn’t need. Do you eat lots of meat like liver? It might be your diet. It’s not like iron when that’s too high that not good. Worth also checking ferritin, Folate and D. These should be checked as standard.
Please get your T3 checked.
Hope you get sorted. It can take a while to get everything checked and rebalance.
Thanks very much for your reply. Now I’ve woken up to this I don’t know where my brain was at that I hadn’t pursued this years ago! Too distracted with life I suppose. You’ve given me great hope that you feel an improvement on Lyothyronine (will google) in just a week!
I like your “these should be checked as standard” comment.
Nearly choked on my breakfast laughing.
Could you send a message to all GPs as mine don’t do any, except folate and ferritin if you complain of severe fatigue, and even then they don’t say there’s an issue even if it’s only 0.1 inside the reference range.
I’m not mocking you, your comments are great, along with this forum. ☺️
My GP’s never did anything besides T4 and TSH for 11 years.
I didn’t know how poor my vitamins were until last year. They’ve now all been sorted.
If it wasn’t for this forum I’d have no idea how important they all are.
I’d suggest all on here should have a list and take it to their GP’s. They shouldn’t refuse blood tests. I think they’re inexpensive and a good means to evaluate what’s going on or not. Or patients will just keep going to see them when it could possibly be sorted a lot sooner. No wonder the NHS is in a mess. In business you would never get this service.
I’m guessing T3 is hard to request and get done as they will not give a patient T3 medication anymore unless you’re at deaths door. I had to go private. And even though my private professor says I need T3 I’ve just had a letter from NHS Endocrinologist saying I don’t. I’ve just started taking T3 and I feel so so much better.
I’m with you and understsnd what you say. My sister who’s had thyroid cancer has a terrible time with her GP to get tests done. She’s never had T3 tested her T4 is sky high as she has to keep TSH at zero. She is always knackered too. It’s a crime I believe how they treat some patients. It makes my blood boil.
I just wish they’d believe us more. Instead they just get rid of you. I read that the NHS has the widest TSH range in the world.
To keep us out of hospital, out of GP surgery’s and no medication. But in fact when finally diagnosed the symptoms are so bad you have to visit more often.
Again it makes my blood boil.
Sorry rant over.
I’ve had such a bad year and it could’ve all been avoided if they’d given me T3 medication a year ago.
I had very low vitD. Once it was optimised (to at least 80) my migraines were less frequent and less severe. I’ve spent months in bed with migraines over the last 9 years. Such a waste and very frustrating that I might have been able to prevent some from happening.
Well, I know how to help myself more now. I’m also keeping an eye on my daughter.
I too have a little T3 added since last June. It has also added to me feeling a lot better. (Private endo too).
I just hope many more people get the info and help they need to recover/greatly improve. ☺️
I remember over 10 years ago I was given vitamin b12 injections for severe migraines. It didn’t make any difference other than giving me really bad palpitations so they stopped. Have no idea if this is a throwback from then?
I’m so glad you’re feeling much better. That’s great news.
Is it that Endocrinologist are all unsympathetic. Every one I’ve seen expect one privately has been rubbish. I could have done and actually did do better at diagnosis myself. I knew a year ago I needed T3 and my bloods proved it. But they would not entertain it. Why? Only cost. I’m absolutely certain that if T3 was the same price as T4 on NHS we’d all get it no problem if we needed it.
44 years I’ve paid into the NHS this is the first year I’ve really needed them and they’ve let me down so badly I don’t know where I would begin to explain.
Thank goodness for this forum and the people whi administrate it and the people who post and reply.
I'm sure it's all down to cost as well. It annoys me that prescriptions for thyroid medication are free as I think this is why they refuse to acknowledge thyroid disease until it's more severe. Why not just make people pay for the prescriptions instead of refusing to treat people?
Exactly! Any alternative is better than being told a blank no when there is an answer to the problem.
I understnd that GPs perhaps don’t really know the nuances of tweaking the meds but when you’re bad enough to be referred to a consultant and that endo just sends you off telling you there is nothing wrong with you then it’s tantamount to neglect.
Yes. My sister was unwell for some time. She was sent to see an Endocrinologist. He said she was suffering from depression. She was not. She was very similar to me who has Hashimotos. She was very upset with the Endocrinologist and left travelling home in tears wondering how on earth can she convince a dr she is ill.
She changed hospital and Endocrinologist. They found a lump and a fine needle aspiration and revealed thyroid cancer!! Within 2 weeks it was removed.
That Endocrinologist from the first hospital should have been struck off. She didn’t complain as she’s shy. I would have put in a serious complaint if it was me.
Oh my god that’s terrifying! Your poor poor sister. I’m glad she moved and I’m glad it was found and treated in time.
I’m sure she was too shocked and distracted to bother complaining and totally understandable and yes this is outrageous she was dismissed and totally diagnosed.
I hope she starts to feel better in her recovery soon.
So agree and never had any checks myself except the usual 2 if I’m lucky, so when I got real unwell about 8 years ago doctors had no idea ! So called it M.E, I only just realised from the good peeps here that my thyroid is more than likely to blame, doctor not interested! If I spend what energy I have complaining then I’m a trouble maker, can’t win or get well, so on the private road. 19 years on thyroxine
I used to come on this site lots but sort of got lost in all the detail and lost the will to fight going to GPs armed with info but not really getting very far. It’s not that the GPs weren’t good GPs just illinformed on thyroid funciotns it think.
I’m the same, 19 years and yes it’s way way too long to waste feeling rubbish. I’m off to a nutritionist next week too. I’ve finally realised if I don’t take some control no one else will. It’s very hard though and to muster the energy as well as the funds for all this is another thing.
Good luck to you and hope you find the right private one.
Same here and I just want my doctor to learn with me but he seems happy to be ignorant to my needs and keeps giving me another pill for something I don’t have 🤷♀️😏 at least I am learning now so thanks
I think they don’t like us to know more but we will because WE are the unwell ones
🧚♂️
Hello there, sorry to hear you are struggling. I'm Not a medic but that TSH and T4 combo suggests something needs investigating. From my very limited knowledge to get high TSH and high T4 and still feel tired you would either have to be skipping your levo for a few weeks then taking loads just before the test (not likely I think) or the T4 from the Levo isn't converting to T3 so your TSH stays high or you are resistant to thyroid hormones and the Levo simply isn't doing is job. Either way you need an endo to review and come up with a plan as it doesn't look like the usual test profile of someone with hypothyroidism responding well to levo. Not sure what elevated B12 signifies.
Hello many thanks for your reply. Yes I take my levothyroxine every day, I miss the odd day from time to time if I’ve run out of the house, come home and gone to bed forgetting but that’s rare. Feels like my body has been conspiring against me for years and yes from researching on here does sound like I’m just not converting as I should.
Hello. From the little I can glean from online looks like I maybe pooling large levels of vitamin b12 but not actually shoving them round my body to be useful and so still having deficiency symptoms despite having way too much. I do find it concerning that large levels are serious indicators for serious conditions so to just dismiss it when you’re not (maybe yet) showing the usual signs isn’t really good enough. It seems it’s a fairly untapped information base. Loads on line if deficiient and only scary conditions if high or else nothing.
I will report back here when I find anything helpful.
My B12 is over the limit too for no good reason. I only took a small amount multivitamin supplement for a few weeks and had stopped for several weeks before the blood test. Would love to know why as it is worrying me. It also showed a possible stage 2 kidney disease, so I don't know if that's connected. I hope it's not the case, but as it was a medichecks test I haven't been given a lot of info, just to stop supplementing if I was. (Not that I would expect anything more from my GP surgery as they tend to dismiss everything until it's at critical stage).
Just wondering about your high B12. Do you have any relevant blood tests - especially FBC (full blood count) and kidney and liver function?
If you had anything really serious it should show up abnormalities there.
If you've had it for years it isn't likely to be anything major, but to dismiss it with a "Don't know" is ridiculous when you are feeling so ill.
High TSH and T4 seems very strange, can't help there I'm afraid. But that should be properly investigated too.
Hope it gets sorted. Can you try a different doctor?
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