Since early November, things seem to have gone off balance with me. I have been 'parked' on 50mg of Thyroxine, since 2020. I have asked for a rise several times and been refused.
Recent surge in symptons are growing in number and affecting me badly now. Lots of muscle and tendon pain all over, extreme fatigue on a daily basis, horrible anxiety....worse at night and bouts of depression where I cannot stop crying. Tinnitus too.
Also dry eyes, eczema, very dry skin, insomnia and a seemingly inability to handle any stress at all.
Took a private test with MMH a few days back. No Biotin for 5 days prior, test done early morning, no food or coffee prior, just water.
TSH was 2.88 (0.7-4.2)
FT4 was 19 (12-22)
T3 was 3.7 (3.1-6.8)
I am not sure what to make of this and would appreciate your thoughts. Many thanks.
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Topsy33
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50mcgs Levo is only a starter dose so no wonder you're struggling with multiple symptoms and I really hope things pick up for you soon.
When you take your blood tests are you doing so as recommended here?
Book test for 9am or earlier, last dose of Levo 24 hours before, fast drinking water only before the blood test.
This gives highest TSH and stable levels of T4 as opposed to measuring what you have just taken.
What supplements are you taking?
Our thyroid hormone only works well with OPTIMAL levels of vitamins.
What are your latest results for ferritin, folate, B12 & D3?
Your FT3 is far too low and TSH over 2 so you need an immediate dose increase of 25mcgs.
Have you tried asking different doctors at the same practice for a dose increase?
As thyroid patients we do need to become our own health advocates with GP’s and Endocrinologists. They get little training in how to make us feel well, instead relying on lab numbers on paper. Take some time to read up on your condition, learn and get your confidence up. This will stand you in good stead when discussing your condition and challenging things that medic say. Take printed medical papers with you evidencing what you are asking for, and also take someone along with you if you feel it would help.
Thank you Jaydee, Yes, I realise that my current dose is far too low. I also always follow the full protocol advised here when testing.... as I said in my posting.
Supplement wise, I take Igennus Super B Complex (1 and 1/2 tablets daily) and at a different part of the day, a natural food form Vitamin C.
Vitamin D, in any form, makes me feel very unwell indeed. I have tried all different sorts, including sprays but after a few days, I am forced to stop.
I do eat a decent diet. Lots of vegetables but also meat and plenty of white and oily fish, all home prepared and cooked.. I have been Gluten free for years but still have digestive issues, though digestive enzymes have help a lot.
I guess I need to get the B12, Ferritin and Folate and D3 tested. I will get that done and post results here.
My GP is adamant that he wont raise my dose says it will give me a heart attack.
I know it is nonsense. I have pointed out that I was a career academic researcher for decades and I can find no evidence of such matters in cases like mine but he just says he wont do it.
There is not much choice of surgeries where I live. it is all very rural and a small practice with a few part time doctors that come and go. I have never seen my GP face to face and I have lived here for 8 years. I see a nurse for annual blood tests... THS only of course.
I used to have an annual ultra sound on my Thyroid in my previous life before I retired because where I lived before were sufficiently concerned about the nature of the gland, including calcified areas and cysts. My current surgery agreed to one ultrasound six years ago. At that appointment, the hospital Doctor told me, he was concerned and would write to my GP recommending further investigation and possibly removal of part or all of it. I queried this with my current GP via phone, when upon he said he wont recommend that because there is no evidence in my annual testing that anything much is amiss!
I can be assertive. It is my default when dealing with this sort of situation but at the moment, I feel too exhausted to contemplate another round of patronising treatment that stresses me out and gets no where. I will get the vitamin testing done and start looking for a private option I think...
Once on thyroid hormone replacement the TSH needs to be under 2 and likely you will feel better when the TSH is under 1 and towards the bottom o the range.
The TSH should go down as the T4 is slowly increased by 25 mcg every 6-8 weeks after further blood tests and with your feeling a relief of symptoms.
We generally feel best once the pro-hormone T4 is up in the top quadrant of its range with the active hormone T3 tracking just behind at around 60/70% through its range.
No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optima levels -
I now aim for a ferritin at around 100- folate around 20 - active B12 75 ++ ( serum B12 500++ ) and vitamin D at around 100.
Is there another doctor at your surgery who might be more knowledgeable ?
There are many reasons for low conversion of T4 to T3 - some easier to understand and rectify than others :
We generally feel best once the T4 is up in the top quadrant of its range as then with good conversion the T3 tracks slightly behind at around 60/70 % through its range.
Conversion can be compromised by non optimal levels of the core strength vitamins and minerals - ferritin, folate, B12 and vitamin D :
Conversion of T4 into T3 can also be down regulated by inflammation, antibodies, any physiological stress ( emotional or physical ) depression, dieting and ageing.
It's complex but we can improve much for ourselves, though you may need to be your own best advocate, and you will come back from this and can improve your overall health and well being once diagnosed and with a prescription for thyroid hormone replacement.
P.S. Once you have rectified all of the above as necessary - if T4 monotherapy does not work well for there are two main other treatment options -
adding in a prescription for a little T3 thyroid hormone replacement - Liothyronine - thereby making a T3/T4 combo:
If you can't tolerate T4 at all - you will need to take T3 only :
or alternatively consider Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland - namely - trace elements of T1, T2 and calcitonin + a measure of T3 and a measure of T4 in each tablet - referred to as grains.
NDT was the original treatment for hypothyroidism and successfully used for over 100 years and derived from pig thyroids dried and ground down into grains - and on the back of which Big Pharma launched it's own synthetic T3 and T4 treatment options in the middle of the last century and then went about gaining market share.
test done early morning, no food or coffee prior, just water.
Was last dose Levo 24 hours before test
Have you had thyroid antibodies tested?
Request GP test vitamin D, folate, ferritin and B12 now
Or test privately
What vitamin supplements are you taking
Tinnitus - low B12
If GP refusing to increase dose you need to see recommended thyroid specialist
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Absolutely shocking that you have been on 50mcg starting dose since 2020 and that multiple requests for an increase have been refused.You must feel awful with T3 level as it is,just 16% through the range.Refuse to leave the doctors surgery until increase to 75mcg is agreed then retest in eight weeks.Really hope you see some progress soon.
If you can not get anywhere with them & will not change doctors maybe it is time to try NDT on your own. Since your symptoms are so awful. Of course it could be and probably is being so underdosed, but you still might take to NDT.
I am so very sorry that you are going through all that.
Also, just want to mention that I was exactly the same with vitamin D. For a time period I was able to get vitamin D injections to do myself & for whatever reason I did not suffer awful symptoms. I am in Canada and I got these vials from a naturopathic doctor. I have since stopped due to budget, but just wanted to put that out.
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