Hi, I have hypothyroidism which was diagnosed three years ago and am currently on Levothyroxine 100mg daily. My memory has improved to a more normal level but I wake up every morning barely able to open my eyes and in work I am able to function, but I lack sharpness and feel detached, almost like I am underwater for want of a better analogy. This maybe causing what is becoming more and more severe anxiety which seems to be manifesting in obsessive behaviour etc. I have had a vitamin test with Blue Horizon which showed insufficient vitamin D which I have taken a loading dose for and now a daily 4000 iu spray for and also take daily sublingual Vitamin B12 after three injections in September last year as I was deficient. My test results are below. If anyone has any advice I would really really appreciate it.
Vitamin D (25 OH) L 33 nmol/L 50-200
Magnesium 0.97 nmol/L 0.66 - 0.99
CRP 1.25 1.25 mg/L <5.0
Ferritin 119.00 ug/L 30-400
Serum Folate 14.00 nmol/L 8.83 -60.8
Active B12 80 pmol/L 37.5 - 150
TSH 1.25 mIU/L 0.27 - 4.20
Free T4 20.3 pmol/L 12.0 a 22.0
Free T3 4.3 pmol/L 3.1-6.8
T4 Total 91.1 nmol/L 66-181
Anti- Thyroglobulin Abs 16 IU/mL <115
Anti- Thyroidperoxidase abs 145.0 IU/mL <34
Cortisol (Random) 240 nmol/L 73.8-507.0
thank you
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Seej71
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Increased anxiety has been the hardest thyroid symptom to manage for me. I have seen a steady improvement since slowly adding T3 to my Levothyroxine dose (as I’m a poor converter) taking magnesium daily (I find dosing early evening helps me relax), being gluten free & practising mindfulness, Pilates and journalling (ie writing positive thoughts).
I need my thyroid medication & key vitamins to be optimal and if I need to make adjustments (either increase or decrease) I do this super slowly as my anxiety levels can flare.
Plus you please edit your post to add ranges (in brackets after results) as these can vary between laboratories. We need this to work out your percentages through the range. I’m assuming your FT4 is at the top of the range and FT3 much lower, indicating conversion issues.
Sorry to hear that you suffer from anxiety too, it’s probably the thing that affects me most. I have amended my post with the ranges. Sorry I hadn’t realised that they must vary so greatly between labs. I haven’t really known about conversion issues so would be interesting to see if I need T3. I will definitely try magnesium at night and the mindfulness but I may succumb to taking Sertraline which I have been prescribed but have tried to avoid. I am virtually dairy free apart from milk in coffee but may now try gluten free too. It’s surprising how many additional things to adjust on top of the Levothyroxine.
High thyroid antibodies indicate Hashimotos and many with this condition (myself included) benefit from a GF diet. You could choose to have a coeliac test prior to commencing a 2-3 month trial. I’m not coeliac but am certainly gluten intolerant. You say you have a sensitive stomach, so this may benefit you. Being GF 100% eliminated my previous gastritis issues (& lowered thyroid antibodies- although they are still over range!)
Optimising key thyroid vitamins is so important to both your physical and mental health, so keep working on these. I managed not to take anti depressants by working to improve vitamins and optimising thyroid levels, but fully understand that these may be needed in addition, to lower your anxiety levels.
I only achieved optimal thyroid levels by taking a small amount of Liothyronine alongside Levo, as my conversion is poor. Looking at your levels, FT4 is near the top, yet FT3 is low in the range.
In the first instance, alongside improving key vitamins, you could try to increase Levo by 25mcg and see if this raises your FT3 higher. However, for me, having FT4 at the very top of the range made my anxiety levels spike. When making adjustments, I like to do this super slowly as I find this can also make anxiety worse (eg increasing by 12.5mcg alternate days at first, building to 25mcg). You may want to try this slow and steady approach.
Have you ever seen an endocrinologist? Only a endo can authorise a trial of T3 (Liothyronine)… and not all endos are supportive of this, even when conversion issues are evident.
I think the way I feel I will definitely look at trying the gluten free diet and the coeliac test to rule it out.
Hopefully I can optimise the vitamin levels so that I won’t take medication for long, but I think I need them now after trying to resist them for years unfortunately.
I will have to look for an endocrinologist to see about T3.
Great advice about seeing to get my Levo increased and upping it in increments.
It’s amazing that when the doctor told me I had hypo he was quite blase and said that he would prescribe Levo and everything would return to normal. It’s only when things are still not right that you look further and realise how complicated a subject it is.
Thank you so much for your help it has given me a lot to think about and hopefully I can start to improve things
Ask your GP for coeliac test and take this whilst still consuming gluten (ie before commencing GF trial)
Although adequate dosage with Levothyroxine optimises thyroid levels in most people with hypothyroidism, some members (myself included) require the addition of Liothyronine to alleviate conversion issues.
A list of thyroid -friendly endos (NHS and private) can be requested by contacting TUK:
You could also start a new post asking for endo recommendations (supportive of T3) in your area. Replies to this need to be via private message to adhere to forum guidelines of not openly discussing practitioners.
Do keep posting if you have any further questions/ require clarification or advice. We are a friendly & supportive group and are here to help 🦋
Hi GREENcard, I think the brand is Mercury but I seem to have a different brand every other time. I don’t think I have had any anxiety from one particular brand but some have made me more fatigued. It’s good that you identified the cause and can avoid it going forward.
No you’re right, the doctor is always late in getting my prescription to the pharmacy even though I have given them the request a week before. I have been just been taking what they have given me (I have had to miss a dose twice before) but I need to ask for one brand that has worked best before.
Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
Can you add the reference range for the thyroid tests? These are important as they vary between labs.
Your TSH is above 1 and most people feel well when their TSH is at or just under 1 so you probably have room for an increase in Levo.
Are you vegan or vegetarian? Just curious as to the reason for deficient B12.
We usually suggest a B complex for both B12 & folate. It helps keep all the B's in balance as they work together. Aim for around 20 folate.
B complex suggestions: Slightly cheaper options with inactive B6:
Well done getting on top of the vit D. Are you also taking vit K2 to help it go to your bones?
Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the 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 falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Thanks for your reply Jaydee. I have updated my profile and added the ranges to the results. Sorry I should have put them in.
I will go back to the doctor about having a retest for a higher dose. I am not vegetarian or vegan so I am not sure why my B12 is down but my red blood cell distribution width was above the maximum range too. I am practically dairy free apart from milk in coffee so going gluten free is definitely something I will look at. My wife has been saying I should because I have a sensitive stomach. Thank you for the advice and links about B complex and K2, which I didn’t know about. I will look for those. I wish the doctors provided more advice but I suppose they are spread so thinly.
Make sure when you retest you leave the 24hrs between last dose and test.
Free T4 (fT4) 20.3 pmol/L (12 - 22) 83.0%
Free T3 (fT3) 4.3 pmol/L (3.1 - 6.8) 32.4%
Your FT3 is on the low side. It needs to be around 70%. Definitely try for an increase but in time you may need to add some T3.
If you eat a reasonable amount of red meat and your B12 was deficient then you may have pernicious anaemia and need injections for life. Injections work in a different way to tablets and sublinguals and you may be better off with injections.
Thanks, I don’t eat a lot of red meat as I eat mainly chicken so I could increase that. I think going back to having b12 injections may be the way forward as I think I eat enough red meat not to be deficient.
I will request a new blood test with the doctor and will look for an endocrinologist too.
Thank you so much for all your help and advice, I didn’t know where to start.
Unless there was a dietary or pharmaceutical reason for your b12 deficiency then it won't go away but simply come back again along with symptoms- of which anxiety is classic as are blood cell abnormalities, Generally blood tests are not a good idea once you've established a b12 deficiency because the result should be very high if your effectively treating it and worse a poorly informed doctor might erroneously announce you have been magically cured. Such a cure being analogous to taking thyroid medication and the doctor thinking your now well forever.
The PA forum on health unlocked is the best source of information re b12.
To be honest I didn’t ask my gp about it and I only found out they were low when I requested the results for a private gp who was of no help whatsoever.
I will definitely post on the PA society forum because I think that my anxiety and fatigue may well be linked and I am not feeling any better since the sublingual daily supplement.
Hi Seej71 Just wondering if you drink a lot of coffee as you mention it in your post, and if this might be contributing to your intense anxiety feelings. I find I am very sensitive now to anything like that and don't drink much coffee at all. A very occasional glass of wine just sends me to sleep so I no longer bother. Being hypo changes your body's reaction to a lot of things.
Hi Lulu sorry for the late reply been a busy weekend. Yes I think you are right with that and I do drink decaf at home but I will have to start bringing my jar to work with me where I probably drink more coffee. It’s worth the adjustments though but it’s hard on times on top of such a restrictive diet to avoid too much weight gain.
Impossible to say anything for certain without the ranges - they vary from lab to lab - but your B12 and FT3 would appear to be too low, and your TPO ab too high. Did you know you have Hashi's?
Thanks for the reply. I have updated with the ranges now. I didn’t really understand the results apart from the obvious vitamin D and the b12 being not that high considering I had had 3 injections in September as my gp blood test showed I was borderline deficient 287 with the range of 180 to 900ng/L. I didn’t really know what the TPO meant apart from it may have indicated I have Hashimoto’s.
It’s good to know from someone much more knowledgeable than myself confirms that it probably is that. I do mainly eat chicken with the occasional steak so I should increase that and may trial more b12 injections. I will look into increasing the FT3 too. Great advice thank you so much.
I recently started learning more about mould and mycotoxins and it’s mind blowing how badly people might be affected and the worst part it goes undiagnosed and practically ignored.
There are lots of mould studies for animals as it’s recognised problem in farming but practically no studies for humans. There are suggestions that its toxicity causes anxiety and even depression.
CFS is quite often attributed to environmental toxins.
I think that majority of our “mysterious” illnesses have biological nature. It’s not like our immune systems just go mad and start attacking own cells. They are fighting with something we just cannot detect yet.
hi Tucansun thanks for the post. I actually moved in to an old property about 3 years ago and there has been an ongoing battle with black mould which will be mostly resolved this year. I don’t know whether it has caused a lot of my problems as some were already pre existing but it probably has not helped. I have bought a couple of large purifiers which remove mould spores and other smaller contaminants. Hopefully any damage that may have been caused won’t be long lasting. I will fully read that article tonight.
I have never heard of them so I will do my research into them. I was going to buy a Uv-c disinfection machine but it seems quite dangerous if not used correctly. Thank you for your advice.
Hi molrom, I am definitely going to try that on top of the vitamin adjustments. I am glad that it helped with it and hopefully made it manageable enough to have a better quality of life.
You should have had more than three injections of B12, they should have been given every other day for at least two weeks and then you should have been offerred a 3 monthly injection ( which is often not enough) from then on. Anxiety very common with B12 deficiency. Perhaps post on the perncious anemia society forum for furthur advice on how to get better treatment.
To be honest I only started taking it because I saw it looked low and paid privately so I didn’t really know about loafing doses. I always feel with the doctor that I am bothering them or will be palmed off. I will ask on the pernicious anemia society forum thanks.
Your blood markers are pretty similar to mine and I too was diagnosed 3 years ago. In the lead up to diagnosis I started to get mild anxiety and developed OCD under stressful situations. I would actually turn the car around to make sure I'd locked the doors even though I was running late for work because i'd already had to check them 3 times!
I'd say this eased with Levothyroxine, but I've had to put the work in outside of the medication to really get back to myself. Medication is only one part of it and we need a massive amount of self care at this time.
I go to bed at 9pm despite the laughs, as it ensures I get quality sleep
I use an infrared sauna blanket twice a week
I make sure I get out and walk every day listening to a podcast or audiobook as this is my version of meditation
I try very hard not to overdo it and keep a work/life balance which isn't easy
I follow a gluten free diet although I slip up at times
I eat fermented foods and really keep my diet healthy to support my gut
It sounds like a lot, but once you're in a routine it just becomes a way of life that means you're looking after yourself
This has all helped a lot, but I'm now on 75mg instead of 50mg and this increase I have to say is what's made the biggest change with exercise intolerance and fatigue. However, I will be keeping everything else in place.
OCD can be terrible, my dad had an extreme case of it until he had anti depressants. I am glad that you have found ways of easing it.
I think I need a review of my Levo to see whether increasing it will help and am going to start trying gluten free. A friend swears by fermented food so that is something else to look at. My diet is very good really but if I can refine it more to feel better then it will be a small sacrifice.
I think I need to start walking more too to relax and I do go to bed too late.
Thanks a lot for your advice and am really glad you have been able to manage it.
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