Hi just a quick question. I’ve posted before but not managed to fill in my profile yet. I had a partial Thyroidectomy in 1995. I’ve been on Thyroxine since then & been stable for years on 75mcgs.
Briefly I saw Endocrine last year & was informed I had been undermedicated for several years.I had a dose increase to 100mcg then again 8 weeks later to 125mcgs. My T3 was 3.2 at that time but went up to 3.4 then 3.7 in September last year so was discharged. I’ve had a few blood tests privately this year & although my TSH has lowered my T3 remains low & T4 often over range. I spoke to my GP & asked to be re referred but she asked me to write to them 🤷🏻♀️ I did but found this consultant had retired & another was leaving. My GP did a further TSH a few weeks ago & my TSH was 0.18 (0.27-4.2) She said to reduce my dose by 12.5mcgs & she would refer me back to Endocrine. I have had a private blood test today Results. T3 4.13 (0.27-4.2). T4 22.26 ( 12 -22). & TSH 0.14 (0.27-4.2). For the past week I just can’t stay awake. I’m sleeping till 11 or 12 daily & nodding off anywhere. Even at the hairdressers! I’ve also very off balance feeling like I’m falling over backwards. Could this be due to my levels?
Any help gratefully received.
Thanks in advance.
Written by
Otto11
To view profiles and participate in discussions please or .
Can you check the range for FT3 as you have posted it the same as TSH which can't be right.
When do you take your last Levo before the blood test?
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsly elevated result and your GP/Endo might change your dose incorrectly as a result.
What supplements are you taking?
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Thanks. I followed the protocol. Last dose yesterday morning. Test this morning just before 9am. T3 range (3.1-6.8) sorry brain dead! I’m just wondering if the levels are what’s causing my sleepiness. X
The GP stopped them during lockdown but Endocrinologist asked him to reinstate last May but after 2 doses he then said I could drop to 6 monthly. It will be next due in November.
Hi Jaydee. I don’t currently have an Endo as I was discharged last September after T 3 started to rise ( 3.2 to 3.7. He discharged me saying it was going in the right direction 🤷🏻♀️ a year later it hadn’t really changed.
I didn’t know I had low B12. After injection in May it was 722. Is it supposed to stay stable after injection & not drop? It was Endo that after my GP contacted him saying was it necessary every 3 months the Endocrinologist said every 6 months would be fine.
Thanks. I’m not vegetarian or vegan. I eat a normal diet. Sorry if that’s the wrong words. I had B12 injections from 2010 every 3 months. Our practice stopped giving them at lockdown but didn’t restart unless you had a diagnosis of Pernicious anaemia. My levels then halved by 2021 then halved again in 2023 which is when I saw an Endocrinologist. He asked my GP to reinstate but I never had a loading dose. I have all my levels written down but don’t currently have them with me as on holiday. I’m just querying why I’m suddenly so tired & wondered if it was the low TSH which my GP has just started to address. I’m hoping to see a new Endo soon having been referred but was already looking into going private so will look at the Thyroid Speilists. Thanks.
I think you need to post on the PA forum here on HealthUnlocked to get some advice about restarting your B12 jabs on a regular basis. I believe many peoples injections were stopped when they shouldn't have been and this will certainly be contributing to your tiredness.
Some very helpful links, with medical footnotes. Do not expect any doctor to understand b12 deficiency, not even a specialist. If they do wonderful but do not expect it.
You have an absorption issue. Unless that has been miraculously fixed, you need your injections.
Also, I have suffered immensely with sleepiness on levothyroxine only (never mattered if it was good labs or poor ones); to the point of narcolepsy-like moments. I could be in a text conversation & drop the phone and the conversation could be darn interesting and asleep I go like a flash! The person on the other end would be 'but you just texted'. It would be that extreme.
But you have been fine previously. So ???? Is it possible that they changed the manufacturer on you? Many know better than I about the high levels of t4 adding to that for you.
Thanks. I’m sorry you’re having sleepiness issues too. I will look at the links. My Thyroxine is the same brand. Accord for 100mgs & Mercury for 25mcgs. X
Hi thanks for your reply. I was taking B Complex ( Solgar) but stopped it a few months ago as my urine was bright yellow. I thought I would have a break. My last vitamin levels were done in May
B12 579 ( 189.900)
Folate 23.1 (>3.9)
Vit D 94 (30-100)
Ferritin 96 (30-260)
These are all improved from previously.
My GP said to retest thyroid in 6 weeks but it will no doubt only be TSH unless I can persuade her otherwise. She has referred me as urgent as she felt out of her depth. I’m hoping they will re test once I’m seen.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week
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
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
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
Post discussing how biotin can affect test results
Many (most?) thyroid patients need to supplement vitamin D, magnesium and B complex continuously to maintain optimal levels……some needs separate daily B12 as well.
Thanks again for all this information. So good of you to send & I really appreciate your time & help. I’ve just realised I put Folate as 23.1 when it’s actually 13.1. I’m so tired I’m making silly mistakes. I will look at all of the links over the weekend.
For the last 20 odd years your " half a thyroid " has been trying to do the work of a full thyroid and I would think the logical next step is to see a sympathetic thyroid specialist who can prescribe some T3 alongside your T4 prescription in order to restore your thyroid T3/T4 hormonal balance.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
Levothyroxine is basically inert and a storage hormone and needs to be converted by the body into T3 the active hormone that runs the body and said to be around 4 times more powerful than T4.
Conversion of T4 into T3 can be compromised - in a healthy thyroid gland - by non optimal vitamins and minerals, any physiological stress ( emotional or physical ) depression, dieting and ageing.
Seeing as you are trying to function on just half of your thyroid gland 's potential it's no wonder you are exhausted and struggling.
Thank you so much. It’s all a lot to take in & don’t understand why I was discharged a year ago after only 3 appointments if things were not right. I know I can be better than this but getting listened to by GP & Endocrinologist is so difficult. Thanks again for your time & help x
Once I had insisted on my doctor allowing me a T3 and T4 reading - which I had to pay the local hospital laboratory for myself - and then seeing the imbalance between my low T3 and too high a T4 - I was reluctantly referred to the endocrinology department at the hospital - and all in all - messed around for a further 18 months for 3 appointments -and during which time I knew I had organise a plan B.
I was refused both T3 and NDT by the hospital in early 2018 and decided to purchase my own additional thyroid hormones and haven't looked back and am much improved.
I'm afraid we all need to read up, become our own best advocates and do it for ourselves.
Barry Durrant-Peatfield's book - Your Thyroid and How to Keep It Healthy - is written by a doctor for and to enable patients to advocate for themselves and offers practical suggestions as to how to fix yourself.
When I joined this forum researching low ferritin in 2015 there were around 15 K members - last time I looked - around a week ago we had over 133 K - so I think that says it all - and thyroid health is down to the patient as the system doesn't seem to able to support us better.
Thank you for all that information. I feel like I’m up against a brick wall trying to get anyone to listen to me. As you say I will have to learn as much as possible. Everyone on this site are so very helpful. My issue is that I have lots of other health conditions & im scared that T3 could have the potential to interact with my other meds. Mainly my Epilepsy meds as I know even simple antibiotics cause less absorption of them. My brain is telling me that as it’s just replacing what isn’t there it should be ok. I’d just like confirmation of this. Maybe I could ask a Pharmacist as they are usually better with these things. I will also look up the book Thank you x
Hi Otto, not sure if this is helpful but I recently had fatigue and brainfog that was helped by B12 (under tongue drops) and eating liver for folate. PLus a levo increase. However I had to see the sleep clinic re my extreme tiredness. My consultant there was extremely helpful and revealed that some people can have an extreme reaction after eating carbs and he wondered if this had been triggered by me being undermedicated (I don't have a Thyroid) and Dr had mistakenly reduced my Levo to extremely low levels. Cutting out carbs as much as possible knocked it on the head and I am in a great place now.
Thanks. Glad you are feeling a lot better. It’s just the last 10 days or so that I literally can’t keep my eyes open. I always have Chronic Fatigue/ME for past 12 years after virus but this feels different. Just tired. My GP has asked me to lower my dose as TSH under range. As I’m having B12 injections I was concerned about a supplement of it too. I must admit my sleep is usually dreadful but atm it’s at least 12 hours every night plus afternoon nap! I have to admit I do love bread but don’t eat sliced. Only occasional sour dough. X
I feel you - and actually when I posted about the tiredness, a CFS person also advised on looking at carbs. Great that you're having the B12 injections - don't take more as it will just be expensive pee!!. As my stomach acid is not effective I need the folate too to make the B12 work. Has been a fascinating journey to see what works and what doesn't - we're all different. The women on here have been so great.
Thanks. Everyone on here are amazing & im so grateful for all their help & the time involved. Because I have RA & take medication I have Omeprazole which suppresses stomach acid so that could be part of the problem. My folate isn’t great but at 7.1 GP said it was totally fine! I wonder what his is?! X
Your "low TSH" has little bearing on how you feel (sleepy) but your low Free T3 has an enormous impact. Do push for complete testing which includes Free T4 and Free T3. (Along with the suggestions already made here.)
The TSH is the least important of all your readings with the most important reading being that of the T3 and needs to be around at least 50-60 % - through it's range and tracking behind your T4 reading by some 10/15% :
Yes thank you. I have got a list of private Endocrinologists from Thyroid UK so will probably go down that road as waiting much longer is just affecting my health even more.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
High cholesterol and low TSH
Endo consultation today for low TSH
Very low TSH and is T4 critical?
tsh too low on levo dose
Is this TSH and T4 too low?
