Had TT June 22. Was started on 150mg Levo. Felt absolutely awful, couldn’t function. Had bloods done in Nov 22 and was found to be overmedicated (tsh 0.10 (0.27-4.2) and ft4 18.8 (12-22), so dropped to 150/125mg per day. Initially, for first couple months was better than I was (still felt really awful). Bloods done again 8 wks later and tsh 0.13/t4 20.2. (Did a medichecks one that was tsh 0.14/t3 4.2 and ft4 19.9)
Dose dropped again to 125mg per day and 2 weeks after felt as bad as I did on 150mg per day. It’s been 8 weeks and just had bloods done. NHS tsh/t4 only, waiting for update on new numbers and a phonecall apointment from ENT consultant (who is dealing with all this since TT. No GP involvement or been referred to an endo)
The last 8 weeks have been awful. I feel drunk, no energy at all, dizzy, can’t think straight, I struggle to function and am out of breath. I am asleep every chance I get or I can’t get up from the sofa. I push myself for one small task a day, then that’s my lot. If it’s a big task then I’m done for days.
My question is, for my consultant appt next week, what should I ask or be expecting wrt dosing? I know I don’t have my new blood numbers yet but based on previous blood results should I try for more or less levo? If my bloods are relatively the same as previously and they drop my dose again I’m so scared I won’t be able to get up out of bed at all!
My last vit checks were
Ferritin 40.4ug/L (10.0-291)
VitD - 77.8
Folate - 18.33.
B12 - 327 (211-911)
I’m also on HRT and nurse said iron was a bit low so have started taking a spray this week.
Can anyone advise where I go from here with regards to dosage, consultant and trying to sort myself out?
TIA. I appreciate all your help. 🙏🏼
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PurpleKitty111
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Hi. Thanks for replying. I’ve been taking 100 Accord and 25 Mercury. It’s been same brand for last 2 months. Prior was 25 Teva for 2 weeks. Was 150 Accord before that
Blood draw was about 8am and 24 hours since last Levo
Im taking Better you vit spray D3 3000 & iron & K2. Liquid B12 3000 ug, Biotin (that was stopped before blood draw) Folate 400ug, Magnesium glycinate and a couple of brazil nuts a day.
First thing to ask is are you doing your thyroid test as we advise:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day.
In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:
If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Certain foods may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw. If taking NDT or T3 then last dose should be 8-12 hours before blood draw, split dose and adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 3-7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
biotin use can result in falsely high levels of T4 and T3 and falsely low levels of TSH
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
Also, do you take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.
The problem is that your doctor is only testing TSH and FT4 and appears to be adjusting dose on TSH alone. This is wrong. To get a full picture of your thyroid status you need the full thyroid panel - TSH, FT4 and FT3 - unfortunately the FT3 is rarely included. We need FT3 testing because T3 is the active hormone which every cell in our bodies need. T4 has to convert to T3 and we can't know if it's converting well enough if we don't test FT3 at the same time as FT4.
Dose adjustment by TSH doesn't take into account our thyroid status. TSH is a pituitary hormone not a thyroid hormone.
Did a medichecks one that was tsh 0.14/t3 4.2 and ft4 19.9
(We always need reference ranges with all test results, ranges vary from lab to lab; however, I do know Medichecks ranges).
Here is your biggest clue as to why you are symptomatic.
FT4: 19.9 (12-22) = 79% through range
FT3: 4.2 (3.1-6.8) = 29.73% through range
You have a decent level of FT4 but a pitiful level of FT3, you are not converting T4 to T3 very well and it's the low T3 that is causing symptoms.
We need optimal nutrient levels for thyroid hormone to work properly and good conversion to take place.
My last vit checks were
Ferritin 40.4ug/L (10.0-291)
VitD - 77.8
Folate - 18.33.
B12 - 327 (211-911)
When was this test actually done?
Ferritin is very low, it's suggested that ferritin be half way through it's range but I've also read that the optimal ferritin level for thyroid function is 90-110ug/L. This definitely needs improving but you should have a full iron panel done to see if you are iron defcient and need iron tablets or just low in ferritin. Iron panel consists of
Serum iron
Total Iron Binding Capacity
Saturation percentage
Ferritin
Vit D is recommended to be 100-150nmol/L by the Vit D Council, Vit D Society and Grassroots Health so you could also work on improving this. You might want to check out a recent post that I wrote about Vit D and supplementing:
and you can check out the link to how to work out the dose you need to increase your current level to the recommended level.
Your current level of 77.8nmol/L = 31.12ng/ml
B12 is low. Presumably unit of measurement if ng/L or pg/ml (both the same). According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Check to see if you have any signs of B12 deficiency, some people with a level in the 300s have been found to need B12 injections:
I was aware that vitamin levels may be low after vits blood test in Aug 22, so I started supplementing. There’s not much difference in the November bloods.
Vitamin bloods done 25/11/22
Serum C <4 mg/L (0.0 - 9.0)
Serum ferritin level 40.4ug/L (10.0-291.0)
Serum vitD level 77.8nmol/l
Serum Folate level 18.33 (>4.12)
Serum Vitamin B12 327.0 ng/L (211.0-911.0)
Thyroid labs by NHS done 16/1/23
TSH 0.13 (0.27-4.2)
FT4 20.2 (12-22)
MediChecks labs done 15/1/23 (for ft3)
TSH 0.14 (0.27-4.2)
FT4 19.9 (12-22)
FT3 4.2 (3.1-6.8)
All bloods taken around 8-9am, before food, empty stomach, 24 hrs after last levo dose, biotin and B12 stopped for 10 days prior and levo taken after blood test as per tips picked up on forums.
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
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 methyl folate supplement and continue separate B12
thank you SlowDragon. There is a lot to digest here so I will start researching again. The brain fog only permits certain amounts going in, add to that my job and I’m trying to sort my Dads health, I’m in brain overload!
Thank you for taking the time. I’ll start researching your recommendations for supplements and a referral to endo from GP.
Goodness you have been messed about haven’t you. Your symptoms sound awful, we’ll done for getting on with advocating for yourself.
You have great advice above, my contribution is to say take your time, everything you add, adjust and change takes time for the body to settle. We all want to tweak and fiddle but it’s a fools game, sticking with a dose for 6-8-10 weeks can make such a difference to how it feels in week 1-2-4 etc.
Ignore TSH
Your Levo dose should sort your FT4 whichever dose makes you feel least worst.
Vitamins, I followed SD advice and introduced one per fortnight, sorting folate, B12, D were life changing and most significant for me ferritin had a big effect.
Then 18 months on I’ve trialled a tiny dose of T3, this has helped (but wouldn’t have if I hadn’t done the steps above).
On ferritin/iron, chase that up, I’ve done a lot of reading on it recently as I struggle to maintain (fibroids) I learned that tea, coffee and chocolate/ cocoa (even herbal teas with high tanins) with a meal or within an hour of taking an iron supplement reduces its absorption by 39-80% in most people tested.
Good luck planning and monitoring, send us updates 🤗
Thank you for replying. You have no idea!! It’s been absolute hell since my TT and trying to find help or understanding has been ludicrous. I definitely didn’t know about the chocolate. 😬🤦🏻♀️😢
I did wonder whether the supplements I was taking were enough or right.
Can I ask what you take and brands? The choice seems to be huge and with different doses it’s a bit of a minefield.
Bear in mind these have been recommended here for me, based on my blood test results. It might not be the right thing or the right dose for you. But I find it useful to compare with others and then work out what to do.
Thorne Basic B Complex (1 a day except for a few days before blood tests because it contains biotin) uk.iherb.com/pr/thorne-basi...
I have tried Igennus B Complex but it didn't do anything for me, I did take the correct 2 tablets a day to match Thorne, but still, it wasn't right for me.
On those days before blood tests I take B12 and Folate separately otherwise I get my low B12 low folate symptoms of pins and needles and numb/tingly arms.
I've tried two different Vitamin D with K2 and my level rose faster with this one:
Horbach D3 with K2 (sunflower) oil drops, was on 4000iu (4 drops) but am now optimal so on a maintenance dose 2000iu (2 drops). Mine was from Amazon but I couldn't find a link this time, this is the same one from eBay ebay.co.uk/itm/155391182091...
My husband and daughter prefer this though - its a D3 with K2 oral spray, currently on BOGOF at H&B who I don't usually recommend, but BOGOF at £11 is a good deal its often £7-8 on Amazon etc. hollandandbarrett.com/shop/...
Magnesium, I have the Glycinate form as I tend toward loose bowels rather than constipated, folks the other way swear by the citrate form. I take 1 per day (half the dose on the bottle) this has fixed my daughters post exercise cramps. amazon.co.uk/Magnesium-iper...
I take selenium and zinc but haven't invested in testing these so on SD's advice have dropped down to a quarter tablet of both so I don't risk over doing it.
Zinc also H&B and contains copper - not sure I'd re order these though, again I quarter them, I seem to be quite sensitive to these. hollandandbarrett.com/shop/...
Ferritin - After repeated blood testing and iron panel results, I have self diagnosed Iron Deficiency without Anaemia (apparently very common and can make you feel just as bad as Anaemia but it doesn't get the attention). I take Optifer Alpha, Haem Iron, 1 per day as well as eating 200g liver per week either as a stir fry or I make pate, the liver does get a bit much (I vowed never to eat it as a child, gave me shivers of childhood horrors) but I've got over it and its quite nice with a bit of kale and a few shallots! I'm keen to replace with a tablet though, my next Haem Iron order will be from Three Arrows, as recommended by a few members here. Website is shocking but it seems to get the levels up faster and that is what I need. Other options I've looked at but not tried yet are Iron Biglycinate, I get a bit of IBS type tummy so I'm staying on the gentle side of iron. ( I should note: I have fibroids and take Transexamic Acid for heavy periods, this is the reason my ferritin won't rise, its a constant replenishing act, GP and Gynae department want me to have a mirena coil but I'm super sensitive to Progesterone and have enough of my own still, no requirement for contraception and a previous bad experience with HRT (and undiagnosed AI hypothyroid) gave me moderately severe depression and clinically severe anxiety (and fibroids). Thankfully MH now resolved with CBT and T4/T3 combo. Fibroids, not so much.
T3 - I have a private prescription from Roseway labs, an appointment is £30 and you speak to their pharmacist prescriber, fill out a form, send most recent private blood tests and discuss your symptoms. My first 12 week prescription cost £75, which is less than I've spent on all of the above and its really helped! I've read advice from the admins here that says you shouldn't do this before you have T4 and vitamins optimised - body can't make use of it till optimal.
Yep - I absolutely rattle if you shake me, I have a drawer full and had to buy a pill organiser, but I don't care, I feel SO much better.
Other things that have helped:
Betaine with Pepsin - a digestive aid that helps with the burping, belching, reflux, overly full feeling that comes with low stomach acid. naturesbest.co.uk/digestive...
Apple Cider Vinegar (with mother) - same as above, I have a dribble in my breakfast smoothie. (from all supermarkets Asda etc, Aldi had some this week)
L-Reuteri home made probiotic yoghurt (from reading book by Dr William Davis Supergut).
Realising I am better off without sugar, grains, alcohol, dairy, and soy, increased animal and vegetable/seed fats, increased protein and low carb not no carb.
thank you so, so much. It gives me a staring point. My diet is absolutely horrendous. It’s gotten worse since Xmas. No appetite and end up eating rubbish. It’s a vicious cycle that I really need to stop. Did slimming world a few years ago and keep trying to get back to that but being so fatigued I struggle to prep anything.
I’ve got a lot to read, learn and do after posting this. I’ve not reached the dead end I thought I had.
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 said to be around 4 times more powerful than T4.
T4 - Levothyroxine is basically inert and a storage hormone which is converted by your body into T3 and the active hormone that runs the body and it is too low a T3 for you that is causing all these issues.
Without a thyroid - it is essential that you are dosed and monitored on your Free T3 and your free T4 results and we generally feel at our best when our T4 is in the top quadrant of the range as this should in theory convert to a decent level of T3 around the mid 5's.
The accepted conversion ratio when on T4 monotherapy is said to be 1 / 3.50 - 4.50 T3/T4 -
If we look at your Medicheck reading - and divide your T4 - 19,90 by your T3 - 4.20 - your conversion ratio is coming in at 4.74 - and showing poor conversion of T4 to T3.
Conversion of T4 into T3 can be compromised by low levels of core strengh vitamins and minerals - and everywhere I researched suggested ferritin needed to be over 70 for any thyroid hormone replacement to work well.
I now aim to maintain my core strength vitamins and minerals of ferritin at around 100 - folate around 20 - active B12 75++ ( serum B12 500++ ) and vitamin D at around 100:
Some people can get by on T4 monotherapy :
Some people find that T4 seems not to work as well as it once did and can rectify this by adding in a little T3 - Liothyronine - especially since having lost one's own thyroid - and restore hormonal balance with a combo prescription of T3 ad T4 prescriptions.
Some people can't tolerate T4 and need to take T3 only :
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormone as the thyroid gland and derived from pig thyroids dried and ground don into tablet referred to as grains.
Currently yor doctor can only prescribe T4 - so you will need a referral to an endocrinologist to sanction any treatment option other than T4 monotherapy - though 20 odd years ago your doctor had all the options in his tool box to treat with if health and well being were not restored well on T4 monotherapy.
Currently it is a bit of a post code lottery regarding getting a new prescription for T3 - Liothyronine - and can be seen to be based more on ICB financial constraints than medical need.
Many of us have ben forced to self medicate just as we have been forced to un our own blood tests as the NHS is reluctant to even test Free T3 and Free T4 levels together to even see or acknowledge the obvious thyroid hormonal imbalance
Hi Pennyannie. Thanks for replying. From what I have been reading here and on the thyroid forums, I’ve seen the nightmare of obtaining T3.
Since my TT in June 22 I have been having 3-4 monthly phonecall appointments with one of my surgeons. He has been dealing with dose changes. My next phonecall appointment is on 13th and was waiting to see what they were going to do next before I go to GP for endo referral. I’m limited to how much I can do privately so going via NHS first. Thank you for your conversion. I will try learn more about them.
Well yes of course, that is totally understandable and what we all start off doing as we believe the system is there to resolve one's health and well being.
i hope you find you have a knowledgeable, sympathetic team of medics to support you through, but if you meet that brick wall, too many times, and can't see a way forward we can help navigate you through.
Thyroid UK- the charity who support this forum - hold a list of patient to patient recommended endos and thyroid specialists, both NHS and private - so maybe contact admin at thyroiduk.org after the weekend and get the list as I believe you are allowed a second opinion and can be referred to a specialist of your choice.
There might be someone on the list within a sensible distance from you, for a face to face appointment if you prefer this to a video consultation.
You can also ask forum members for opinion on anyone you think you might like to see - just ask in a new question and the replies will be by Private Message - the paper plane icon above will light up - for private replies as we are not allowed to talk openly about any person.
thanks again SlowDragon. I’m never sure when to do a Medichecks check to check T3. I’ll do the advanced one next time so I can see vits results too. In the meantime I’ll research what supplements to change/take and see if I can improve the results.
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