I haven't been here in a long time but still struggled to get through each day but managed to get one my feet at least.Now I have crashed back to how I was years ago.
After having excess amount of stress last year I could feel myself slipping back and then i caught the coughing / viral thing just after christmas.
This is when my body gave up.
I have suffered with anxiety ever since I first ever took thyroxine after my thyroid was removed due to graves (how I wish I never agreed to this).
My body is again constantly in the flight or fight mode. Pacing the house Stomach pain, nausea. Gp wants me to go on antidepressants to calm down the anxiety which will stop the acid causing the nausea.
To look at my face you would instantly say am hypothyroid. I can't think straight, my body is literally shaking inside. No energy, aches and pains all over.
Here are my last results I know for some reason my tsh is a little low which they have said to reduce my levothyroxine to 75mg a day from originally 100mg 5 days and 75mg 2 days.
Tsh 0.20 (range 0.35 - 4.9)
T4 18.9 (range 9.1 - 17.6)
T3 4 (range 2.4 - 6)
Vitamin d 56 (range 50 - 200)
Serum folate 5.2 (range 3.1 - 20.0)
B12 216 (range 187 - 883.0)
Gp does not believe any of my symptoms are due to vitamins being low and said if I wanted to I could go to Holland and barret.
Thank you in advance
Fionna
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Fionna
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GPs get no training in vitamins & nutrition so I would take whatever they say with a pinch of salt.
Your B12 level is terribly low. Do you eat red meat and eggs? For sure a lot of your symptoms will be as a result of that low B12 level.
What time of day do you take your thyroid tests? Highest TSH is at 9am or earlier.
When was last dose of Levo before this test?
Always test at 9am or earlier, fast before test, stop biotin supplement 4-7 days before.
Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150. Most people need a minimum of 3,000iu per day.grassrootshealth.net/projec...
Hi,Thank you for your reply. My last blood test was in the afternoon. As it was the earlest blood test i could get. I think I took my thyroxine before in the morning. I was an absolute wreak and all I can remember was walking like an old woman. Even to sit down took me ages as it hurt so much and I had to get someone to take me as I wasn't even safe walking.
I will get someone to look at what dose of vitamins I need. Unfortunately when am like this my brain just doesn't function which then adds to the anxiety.
B12 - do you have symptoms of B12 deficiency? The reference range for B12 is very wide and cut off point too low. theb12society.com/signs-and...
If you do then you should discuss this with your doctor for further tests for Pernicious Anaemia.
If not, then start with a methyl B12 sublingual spray or lozenge for a week, then add a good B complex. Once you run out of the separate B12 just continue with the B complex.
So ask them to restest in the morning and allow 24hrs between last dose of Levo & test. Your blood results will look quite different. Refuse to change dose if they suggest that until you retest.
As GlowCoach has outlined, your priority is to optimise key thyroid vitamins. Many GPs focus on vitamins being ‘normal’/ ‘within range’, yet this can be far from OPTIMAL where you feel most well. I managed to turn my health around by following advice on improving vitamins from SlowDragon & others on this forum.
Rather than pop into Holland and Barret for advice, do take time to read through links provided by GlowCoach & others. Remember, members here have a wealth of experience in thyroid conditions. Don’t try to take everything in at once- I understand that this can be daunting when you feel unwell.
Regarding anxiety- this has been the worst symptom of having a thyroid condition for me. It is always worse if my thyroid levels &/or key vitamins are not optimal.
For your next thyroid blood draw, try to follow the following advice:
a)complete thyroid blood tests early morning (preferably before 9am)
b) drink only water before the blood draw
C) ensure your last dose of Levothyroxine is 24 hours before the test (ie take your daily Levo AFTER the blood draw).
This ensures highest TSH reading and offers consistent results. (Please note, this is a patient-to-patient tip)
Thank you. I will get my friend to look at this tomorrow and work out what I need as on top of everything my eyesight goes, blurry. I am struggling with my GP as she is convinced that it is my body's anxiety/depression causing all this and thinks antidepressants is the way to go and I have been having this fight for years as in my eyes antidepressants is just putting a plaster over something and not getting to the cause but unfortunately am not in a good place to fight my corner without thinking straight or bursting into tears 😢. I knew my body was declining last year . I had started hrt and my anxiety was getting worse and I asked the nurse does it cause it and she said no but as my mum had not long died they put it down to that but now am reading it can sometimes effect levothyroxine. I stopped it at the beginning of this year as when I put the gel on my arm I felt like my body shut down for a bit, hard to explain but it wasn't making me feel good.
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You havent answered if you eat red meat or not?
Suggest you try a different GP about the B12 level. They should be taking symptoms into consideration. You could also post on the Pernicious Anaemia forum here on HU. That is if you do eat red meat.
Hi, Sorry I thought I was pressing the button below but the way I am at the moment who knows.
Yes I do eat red meat but not often, once a week maybe.
What is dawning on me more was I thought it was all to do with levothyroxine but my anxiety, confusion/brain fog is really bad with my blurry eyesight, fatigue, back pain, ear fulness, that it could be my b12. I do suffer from svt episodes. It can happen out the blue watching tv. Heart consultant said its a faulty node and he will just ablat it but I said no thank you as I was still ill trying to take thyroxine.
At the end of last year I lost a day. I was convinced it was Friday when it was Saturday. I was in the supermarket and couldn't believe how busy it was for a Friday afternoon (it was actually Saturday). Things on the tv didn't make sense but I still believed it was Friday as my brain just couldn't work it out. Sunday i had lunch booked with my aunty but I got a call from her saying where was I (because I thought it was then Saturday). I actually broke down and cried. Now people will say it's easily done and laugh and yes I agree it can happen to the best of us but I knew it was something more even thinking is this the beginning of dementia.
When you say see another gp, are you suggesting to go private? As I couldn't see a different one at my surgery as they will sing from the same song sheet. I have spoken to my local pharmacist and she is happy to give me her friends number who she goes to and pays to have her b12 injections.
I really do appreciate all the advice you have taken the time to give me.
If GP isnt paying you any attention then many people buy their own B12 injections. If you aren't eating much red meat then it may jusy be that either you could eat more but also you need a good high dose supplement. You may well absorb a supplement OK.
Get your friend to read what I have suggested above tomorrow and get going on that ASAP.
Your thyroid results although not optimal wouldnt necessarily point towards the symptoms you have so try the B12 route for now.
Gosh you poor thing, sounds just like me. My body gave up after getting Pneumonia and months of stress. When I tested my cortisol it was very low and I definitely had symptoms of this. Constant anxiety and fight/flight feelings, just awful. I think eventually it pushed me into a full 'break down' and I was in bed for months. However, I think a lot of this was my own doing by catastrophising but at the time I couldn't think straight, I thought I was dying. What helped was, time..probably more than you want to think. Take off all responsibility that you can and focus on calming your nervous system so your body can start to heal. There are so many resources to help with this online and in books. Anxiety meds may help in the short term, I wish I had tried them, it might have sped up my recovery. Feel better soon
HiAn endocrinologist has tested cortisol in the past (even when i was poorly before) and it always comes back normal. I started hrt June last year. I didn't feel much difference but felt more anxiety. I stopped it this year rightly or wrongly as when I put the gel on I felt my brain fog got worse. My health was declining at the time so it might not have been the hrt. I am now looking into having b12 injections and supplementing my vitamin d.
If it was a saliva cortisol test that is great. Although like with thyroid tests, assuming what they say is normal, and what is good, may differ significantly.
As you will understand from your thyroid tests, free cortisol ( saliva measures this) can be very different to total cortisol ( in blood).
I am taking HRT too and, as you say, am feeling anxiety all of a sudden which i deduce is due to hormone changes. But my approach is to try to get all the hormones to reasonable levels ( but takes a long time and not there yet) and hope that sorts it out. No right answer unfortunately.
Hi Fiona I have b12 deficiency and Been on injections for years. Your GP is clearly clueless about b12 deficiency. Not acceptable to expect you to sort this. You clearly have neurological symptoms. I would refer your GP to the NICE guidelines March 2024. Which says 200-300 they should treat if you have neurological symptoms and refer you to neurology.. Your GP should be running some additional tests as well to check for PA - one being Intrinisic Factor the other Homeocystine . The latter rises in low B12. Intrinsic Factor only picks up 50% of PA but if positive it's definitive, if negative it doesn't mean you don't have it.
The blood tests should be run before starting b12 treatment.
B12 deficiency is quite common in Hypothyroidism. Folate is commonly low.
You are exhibiting many of thr symptoms associated with B12 deficiency including blurred vision. Is there any history in your family of it? Here are the NICE Guidelines March 2024. I'd email them to the practise manager to express your concerns and ask to be seen again.
Thank you for advice. My GP really won't entertain anything to do with my vitamins. Last time when I was actually deficient she prescribed d2. It took ages to get the right loading dose of d3 prescribed. I think the only was I can do this is doing it myself with supplements.
I doubt it will make any difference seeing a different GP at the practice as they will only look at my previous GP notes. Another GP will see that my GP just gave advice to supplement vitamins if I wanted to as she thinks my levels are ok. I have been sat here thinking when I had my thyroid removed in 2011 and was started on thyroxine. I was complaining of tiredness, ear fulness. I was scared to get on an escalator, I had a holiday booked to the maldives but I wasn't excited. It was like a part of me had died. The endo just said I had an underlying depression which I then just broke down in floods of tears as he wasn't listening.
That's shocking. So sorry to gear what your endo said.
I've tried different GPs and they do have differing opinions. If you take the NICE guidelines and point out what it says for your range.....ut hopefully will help.
It's obviously up to you but I've sadly always had to fight hard to get treatment for all my chronic conditions. Please don't give up.
Hi Fiona, The advice from wavy lines is excellent. Many of us with hypothyroidism develop b12 deficiency and the symptoms are quite similar. I will send you a link to an excellent video made by a GP who specialises is b12 deficiency. I think you'll see quite a difference in approach to that of your GP.
I too thought I had the onset of dementia and this when I started my research into my own health - some 10 years after having had RAI thyroid ablation for Graves Disease.
I first realised Graves is an Auto Immune disease and as such there is no cure - all that happens by removing the thyroid gland is that the ' life threatening ' end worst symptoms of Graves are gone - and then you are primary hypothyroid and with Graves Disease.
Graves is poorly understood with every persons symptoms being unique to them - but we do know that stress and anxiety are common ' triggers ' and you have had a lot going as well as having lost your Mum.
From these blood test results it is evident that you are not converting well the T4 into T3 -
We generally feel best when the T4 is towards the top quadrant of its range at around 80% with the T3 coming in at around 75% through its range.
Put another way - the accepted conversion ratio when on T4 only medication is said to be -
1 / 3.50-4.50 - T3/T4 - with most people feeling at their best when they come in this ratio at 4 or under -
so if I divide your T4 result by your T3 - I get your conversion ratio coming in at 4.72 - showing you slightly wide of the centre - but not dire ( mine was at 5.50 ) :
T4 Levothyroxine is the first line treatment we are all put and T4 is a pro-hormone that the body needs to breakdown and convert into T3 in the liver and the brain needs an awful lot of T3 to function well -
In order for T4 to convert well into T3 - we do need to maintain optimal levels of ferritin, folate, B12 and vitamin D -
I now aim to maintain my ferritin at 100 - folate at 20 - ative B12 125 ( serum B12 500++ ) and vitamin D up at around 125.
I suggest you look on here for recommendations as many feel High Street own brands mostly use chalk bulking agents and do not use A graded vitamins and minerals in their products.
Just for reference 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 - with T3 being around 4 times more powerful than T4.
There are basically 3 main treatment options when primary hypothyroid :
First off - it is essential that you are dosed and monitored on your Free T3 and Free T4 readings and not a TSH - without a thyroid your HPT axis had been down regulated making the TSH an unreliable measure of anything and secondly with Graves your TSH was and may well still be Hi jacked by your immune system circulating Graves antibodies which can wax and wane throughout your life.
The first treatment we are all prescribed is T4 monotherapy - the cheapest option.
Some find at some point in time they dont feel as well as they once did and that by adding in a little T3 - likely at a similar dose to that their thyroid once supported them with - they are able to restore their T3/T4 ratio and their health and well being is restored.
Others can't tolerate T4 and need to take T3 only - as you can live without T4 but you can't live without T3 - Liothyronine.
Whilst others find their restored better taking Natural Desiccated Thyroid which is the original treatment for hypothyroidism and contains all the same hormones as that found in the human thyroid gland - namely - trace elements of T1, T2 and calcitinin + a measure of T3 and a measure of T4 in each grain / tablet - and derived from pig thyroids, dried and ground down into a powder which is then made up into tablets or capsules to patient needs and used successfully for over 100 years.
I see you have already tried NDT through Dr Skinner - but it maybe it's worth looking at all treatment options again once you manage to build back these core strength vitamins and minerals and when you will then be best placed to know what suits you best.
Sadly currently your primary care doctor can only prescribe T4 with the 2nd line treatment option being anti depressants - and yes, many of us have been there and end up no better and just feel side lined and not listened to -
You will need a referral to endocrinology for any treatment option other than T4 - and NDT is now, I believe, black listed for new patients, and T3 a bit of a post code lottery - but of course if you can afford to privately all treatment options are available for you to try.
So. I've written a lot here, so just go one step at a time - there is a lot to take in and act upon
Hi,I have tried adding t3 back when I was like this years ago through another private endocrinologist it started to help a little but my body just couldn't cope and the anxiety and pain involved. I have been waiting 3 years for an NHS endo to trial me on t3 as I felt stronger in my body.
I saw this endo in January this year when I was declining and he just gave me 3 months worth of T3 to add to my levothyroxine. He said just add 20mg a day to my thyroxine. I did exactly this years ago and it made me very ill. In hindsight it was to big a dose to add each day. So I have 3 boxes of t3 just laying there.
I may be wrong but I feel now my body is nowhere strong enough to add the t3 until my vitamins are in the upper range.
To be totally honest I really don't know what to do but I am hoping doing vitamins first may start to help.
I'm sorry to write this but it reads as though this endocrinologist set you up to fail :
Everything will work better once your vitamins and minerals are optimal but I think as you have some T3 sitting there, it might make sense to start looking at introducing a small dose - what tablets do you have there ?
I take NDT as my experiment with self sourced T3 with T4 was not successful :
But others can advise as to to this - likely cutting these tablets down and starting off with just 2.50 mcg at any one time
They are 20mg tablets. Yes I think your right, he just wanted rid of me. I did everything he said, gluten free, hrt. Also between jumping through hoops for him I was diagnosed with cancer in my back passage. They have managed to catch it early and cut it out but I am convinced it was all caused by being poorly for so long.
So this January when I saw him, he just didn't seem interested. God you just need to look at my face and you can tell am hypothyroid.
Ok then - so hopefully these chop into 4 quite easily - and maybe you chop again -
Maybe get a pill cutter if you haven't already ?
I'm not the right person to advise how to start titrating synthetic T3 when taking T4 :
Your T4 was over range in the above results though I think you took your T4 before the blood draw - so we really need acyrate T3/t4 readings and maybe you need to reduce down your T4 dose as we need to ' leave some space ' when introducing T3 :
Ok then - but if I divide your T4 reading by your T3 reading I'm getting your conversion is now coming in at 4.80 - so pretty much where it was on the other set of results -
with the next logical step to drop a little T4 and add a little T3 - to slowly start to increase your metabolism and be able to extract key nutrients through your food -
though your vitamins and minerals are already too low and need immediate supplementing just to get you back to square 1 :
Sorry to read this - glad it's sorted but would think physically, psychologically, mentally and emotionally this another blow to your overall health well being and it will take time for your body to recover from this - and ' bouncing back ' is not your experience.
Problem i have gp are using results without t3 and she wants another in 5 weeks time. Adding t3 now would not give an accurate result from my last one to see what my body is doing while I increase my vitamins 🙁
Yes - doctors in primary care rarely get a T3 blood test result even when it's known the patient is prescribed and taking T3 and why we end up arranging our own private blood tests and monitoring ourselves.
Doctors in primary care tend to work just from TSH results which when you haven't a thyroid and with Graves a totally misleading reading -
and once of any form of thyroid hormone replacement - we need to see a T3 and T4 from the same blood draw - to at least try and recognise and understand if there is a conversion issue -
and what next to check for - eg - non optimal levels of ferritin, folate, B12 and vitamin D - which again - doctors rarely get taught - and just telling someone with hypothyroidism just to eat more greens, or, this that or the other - is futile,
as the issue is one of too low a level of metabolism to enable to body to extract key nutrients through food and too low a level of metabolism - to utilise, absorb and convert the T4 thyroid hormone into T3 the active hormone that runs the body's metabolism.
Just a thought - do you take the T4 on it's own with water - on an empty stomach and wait around an hour before eating or drinking anything ?
Yes I do most of the time I take in the morning on an empty stomach. I am being really careful now making sure vitamins are taken 4 hoirs away from the thyroxine x
Yes and any iron tablets need to be taken well away 4 hours ++ from anything else -
I now take my B's and vitamin D + K2 ( MK7 - to direct the vitamin D towards bones and teeth rather than heart and arteries ) after my main protein rich meal of the day taken at around noon/1.00pm daily.
hi Fiona, sound similar to me and it’s pure suffering so I really feel for you. Mornings especially I feel cliff edge stuff, heart racing so bad and no energy. I developed thyroid issues after covid and after my last covid July 24 I have not regained my health YET🙏🏻. I have only started armour thyroid jan this year and there’s some light and await my blood testing soon to see what’s happening. I have raised MCH MCV, type of b12 anemia? but I have been taking b complex for years so my results not reliable , now waiting on PA test to come back. What did really pull me up was an IV of b12, folate and other vitamins it was great but after 2 weeks I’m slipping again so clinic said to top up until we can spread it out. Maybe this is something you can look into? My mood lifted, my headaches reduced, bit more energy and my heart calmed, she said covid and thyroid has prob left me depleted. This is just my experience. Best wishes x
Hugs to you, I know you said you would have a friend read this and hold your hand through next steps.
I agree with everyone else on your FT3 and B12.
And I wanted to emphasize how important sufficient ferritin is.
Low ferritin alone can cause a surprising number of debilitating symptoms, and if added to your low b12 and low ft3 - it can cause a lot of dysfunction.
The first step would be to include ferritin on your next blood test.
At that point, if you (or your friend reading this) needs any specifics on treating iron issues, just come back here and ask.
You have a few steps to tackle before you give up! We have all at some point felt as if we were dying… low thyroid and its complications when untreated can do that.
There is hope. Hang in there, it’s all you can do of course for the time being. But it can get better when your b22, ft3 and possibly iron/ferritin optimize.
Lean in this forum as you need to, we are here for you whenever you need.
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Help - Levothyroxine dosage dilemma 
Would love help
Help understanding bloods please. TSH jumped from 10.75 to 4.00 in 8 days. How???
Help please ... 
