Hello I am new here. I was diagnosed with sub-clinical Hypothyroidism in 2015 during private fertility treatment although I only have test results from after I started taking 50mg of Levothyroxine daily (in 2015).
I have always suffered with tiredness, low energy, IBS and muscular pains but was particularly ill in 2018/19 with severe stomach pains following anti-biotics for a kidney infection. I had lots of investigations ( Gastroscophy/ Endoscopy which found some evidence of gastritis and an old healed ulcer. At no point did any doctor suggest looking further into my Thyroid. And they have always maintained that I was ‘normal’ Then in 2021 I started to feel really unwell, whilst I have always had low energy the exhaustion was another scale. I had lots of muscular aches, insomnia, sweating, sore tongue, thinning hair, memory problems, weight gain which I explained to my GP who felt it was gastro related and referred me to the hospital but 12 months later I was still awaiting an appointment and struggling with a busy job though I managed to not take any sick leave. After 12 months I was at my wits end so I made a private appointment to see a Gastro Consultant. He has diagnosed a Hiatus Hernia and Ulcer but upon doing blood tests said my thyroid was under-treated and wrote to my GP asking them to increase my Levo to 75mg and retest. I decided to book to see a private Endo as a result who says my Thyroid has never been optimised and she increased my Levo to 100mg. I am waiting the test results with the lab ranges but know my TSH was 5.48 when the Gastro did the blood test, this then improved to 2.39 on 75mg and subsequently improved to 0.86 on the current 100mg. My GP initially wrote to my Endo to say she didn’t know why I wanted to see an Endo as I was only mildly under-treated. I now feel much better in myself, more energetic, no muscular aches and am sleeping much better but my tongue is still very sore, I sweat profusely with just mild exertion and my ankles get very swollen. This was the case even on the 50mg. I have been reading on here about vitamins and minerals etc. my GP tested for B12 deficiency in 2021 but just told me verbally that I was not deficient. I have asked for the test results. I will post all my test results and lab ranges that I have below. Any thoughts or advise would be most welcome.
Thank you
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Katyf1
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B12 was tested in 2021 but I was told I wasn’t deficient. I have asked the GP for the test results and plan to have a private test now for b12, Folate and Vit D etc as you have suggested. Previously my tests have been done at any time of day and I have taken my Levo as usual but I have since noted testing as close as possible to 9am and taking last dose 24 hours before, stopping Biotin a few days before. Thanks for the feedback
blood test done by Gastro consultant in Feb was TSH 5.48 mU/L lab range 0.27- 4.20mu/L and T4 17.09 mol/L lab range 12-22 mmol/L . At the time I was on 50mg Levo and have been since 2015 with no adjustment. In March I was retested after increase to 75 mg of Levo and TSH was 2.39 mU/L then even more recently on 100mg of Levo TSH 0.86 mU/L. I have asked for the full details including T4 and lab ranges but know I do feel significantly better now. I will post the full results shortly. Also when I was ill in 2019 my results were TSH 6.27mu/L range 0.20 - 4.50 my/L and T4 12.9 pool/l range 7-17 pool/L on 50mg of Levo.
You have had very poor care, unfortunately far from unusual
Levothyroxine doesn’t top up failing thyroid…..it replaces it
So almost everyone on levothyroxine will need to be on full replacement dose
Bloods should be tested 6-8 weeks after each increase and dose levothyroxine increased until Ft4 at least in top 1/4 of range and Ft3 at least 60-70% through range…..and most importantly…..all symptoms improved
All four vitamins need testing at least annually and it’s frequently necessary on replacement thyroid hormones to supplement vitamin D, magnesium, vitamin B complex continuously to maintain optimal levels
Many people will initially need separate B12 BEFORE starting on vitamin B complex
Should then be able to slowly reduce then stop separate B12 and just take vitamin B complex…….Unless vegan or vegetarian then would likely need separate B12 at least 3-4 days week on top of daily vitamin B complex
Low iron/ferritin also extremely common
See what ferritin levels are as first step
If ferritin is low then need full iron panel test for anaemia before considering if going to need iron supplement
SlowDragon I just got a copy of my blood test for B12 and Folate from July 2021 serum B12 296ng/L. Range 145-910ng/L and Serum Folate was 4.8 if/L. Range 3 -20 ug/L. I will get a new test from medi checks or blue horizon. Any feedback on these older results would be appreciated the Folate is obviously towards the lower end of the range. Thank you
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex
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 folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
My GP initially wrote to my Endo to say she didn’t know why I wanted to see an Endo as I was only mildly under-treated.
thank you for all the helpful information I really appreciate it and will have a good read through it all and arrange the vitamin and mineral test. Thanks again
it does sound like you are under treated. Getting full set of tests done inc vits is best starting point then might need to see a new doc - is there not another one at your surgery who can better read results and realise the aim of treatment is to alleviate symptoms not to get you ‘in range’? The range as the doc will know only says 80% of people are happy in this range.
thank you JAmanda I won’t be seeing that GP again. She has been very dismissive. There are a couple of others, it’s a very small surgery so will try them or move surgery. Unfortunately, it was one of the other GPs who previously hasn’t picked this up either. Until I got the Private Endo I had never actually seen any test results I was just told everything was fine and didn’t think anything more about it, until the Gastro Consultant did the blood test in Feb 23 and I had a TSH of 5.48 ( full range etc in previous reply on my post. The Endo asked for my test results since 2015 and I can now see I three occasions when my TSH was quite a bit over the reference range and always high in the range. I feel a bit foolish for putting so much trust in my GPs at the surgery and not twigging sooner about my Thyroid, I think because from the outset they said I had a very mild condition. I really appreciate your reply. Thank you
I’ve read on here there’s no such thing as mild - if you got it you got it. Many have terrible symptoms on tsh only a little over range and some with massive tsh say they’re fine from what I’ve read here.
Doctors are a law unto themselves! I’ve got a new (worse) problem - severe asthma post covid and am so grateful to have private health cover. Still with this the only option is A&E.
good luck! I regularly test with Medichecks by the way - it’s maybe not the cheapest but I like it’s dashboard where you can track symptoms and levels etc - you still need to create your own spreadsheet to write comments to yourself. It’s a task! I was obsessed with getting levels high in ranges but not sure that did much - now I’m about 60% through ranges and feel alright. No yawning. Got energy - well until the vivid and the asthma. Think time on the thyroid meds and vits is the main thing. Improvement is just not quick.
yes that’s what I have been picking up on here. I have Asthma so feel your pain on that one too! Will be getting some tests with Medi Checks or Blue Horizon. Thank you
I have finally got my latest results back from Medichecks, following a few problems with a different provider and wondered if you had any further advice.
Vitamin B12 Active 114.0 pmol/L (range 37.5 to 188)
Ferritin was just over range at 162
To recap I had been having lots of problems with tiredness, painful muscles/joints, brain fog/ pins and needles in hands and pin prick feeling on legs, sore tongue and burning sensation in mouth
I had been on 50mg Levo since diagnosis in 2015
Following an appointment with a Gastro consultant he asked my GP to increase Levo to 75mg as TSH was slightly over range. I then saw an Endo who asked GP to increase my Levo to 100mg and to maintain me under 2.
Since the increase to 100mg I feel significantly better than before though I have continued to have sore mouth/ulcers, pins and needles and profuse sweating if I exercise by just gentle walking
Obviously I can see TSH is slightly above 2 which the Endo wants me to stay below and Vitamin D is very low so needs supplementing and I believe can cause mouth symptoms when deficient. I think Folate is also not optimal.
Any other advice would be gratefully received as my GP just kept telling me everything was normal and suggested my ailments were in my mind, until I got the support of the Gastro and Endo consultants and have also benefitted greatly from the advice on this forum. Though I feel a lot better than I did I still don’t feel 100% right.
Hi thanks for the reply. I have been on 100mg for four months now. Though the brand has changed When I was 75mg it was Teva, I was given extra 25mg which was Teva to make it 100mg and then about a month ago it changed to 100mg Accord.
My last test with Medichecks was done exactly as you advised, at 9am and last dose of Levo 24 hours before. I stopped taking all supplements a month ago to get a true picture of any difficiencies. Prior to that I had just started b12 sub lingual and vitamin D and folate but stopped
CRP is 9mg/L (range <3) and was also above range when my Gastro did his tests in February.
I stopped taking all supplements a month ago to get a true picture of any difficiencies. Prior to that I had just started b12 sub lingual and vitamin D and folate but stopped
In future only stop vitamin B complex 5-7 days before test
In week before blood test, when you stop vitamin B complex, consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Prior to that I had just started b12 sub lingual and vitamin D and folate but stopped
How much vitamin D were you taking
your Active B12 level is now over 70, you only need a daily vitamin B complex
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find only one tablet is 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
Thank you. I have the Thorne Basic B Conplex and Vitamin D supplements here and will start them again straight away.
I think I feel better on the Accord but my mouth is very sore with the burning and ulcers but I am putting that down to the Vitamin D level being low from what I’ve read.
The one thing I can’t seem to shake is the sweating which is quite severe even on the lowest doses of Levo and on both brands.
I will retest in another 4 weeks as I will have been on Accord for 8 weeks by then. My Endo suggested that I should stay below 2 for my TSH.
I will look into an ultra sound for my Thyroid.
I did do a full iron panel too with Medichecks and expect the results in the next 24 hours or so.
Thank you again for all your help it’s greatly appreciated!
oh I forgot to say I had a Coeliac test with the Gastro in Feb it was negative but I have started a Gluten free diet and have noticed my ankles are far less swollen but coincides with changing to Accord too. Will let going with the Gluten free diet.
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