I have been taking levothyroxine since the start of November 2023 following months of me saying that there was something wrong with me.
I looked back over bloods that had been taken and found an anti-thyroid peroxidase antibody report with the results 141.63 (0.0-24.9) that no-one had discussed with me. I questioned it and they informed me I had hashimoto's thyroiditis and this had not be mentioned before so they ran T4 and TSH tests (Oct 23) which had the following results:
T4 14.4 (12.0-22.0) Borderline
TSH 6.36 (0.27-4.2) Slightly raised
So at the start of November the doctor put me on 25mg of Levothyroxine.
When they did my bloods again 3 months (Jan 24) later the results were:
T4 13.9 (11.0-22.0) New range
TSH 2.76 (0.27-4.2)
They didn't change my medication dose and stated my blood results are 'normal'
I am having bloods every 3 months so not due them again until the start of April but my fatigue is ridiculous in the mornings at the moment and muscle ache by the end of the day is not fun.
I think my question is should I push for bloods earlier or just give the medication a chance?
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Crazylegs16
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Make an appointment with GP and push to get next dose increase to 50mcg now
50mcg is the standard STARTER dose
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
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
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
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
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.
Request GP test vitamin levels and coeliac blood test now
Your TSH has reduced because you are taking levothyroxine and your pituitary is no longer pushing so hard for your thyroid gland to perform. Unfortunately as a consequence, your FT 4 has reduced and that’s why you feel so awful.
As you have been advised above, what you need is an increase in Levo to 50 mcg and then another test in 6 weeks. Suggest you put the results on here.
If doctor difficult suggest you emphasise symptoms and ask for a trial increase and point out that plenty of room in TSH range.
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten.
Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
This is very interesting to me. I'm in a similar situation. Started with a TSH of 6.5 and T4 of 11.2. I'm on 50mcg levo but honestly feeling the same/worse since being on it for 6 weeks.
Repeat bloods show my TSH has gone down to 2.2 so GP said all normal and no dosage change, but they didn't test my T4! I asked if T4 had gone up and GP said "well they don't test for it now you're on levothyroxine, but it will have gone up" 🙄
But yours has gone down so maybe mine has too. I'm getting private bloods done to see what's going on.
You are underdosed, simple as. If the GP says about the ranges again, ask him his shoe size. Adult shoe range is 2 to 14. If he is size 10, how would he feel walking around in size 3? That is what he is doing to you. It might just make him think!
It can take a while to find the right dose for you, but he is delaying this process. Tell him you would like to "trial" the normal STARTER dose. Good luck.
Well managed to get a phone appointment this morning of which the doctor (different one than I have been seeing since being put on the meds) informs me everyone is feeling tired at the moment! I discussed my symptoms and levels and could I have my medication increased and he didn't feel it was necessary because my last bloods were 'normal'
He discussed various things with me like do I snore! and my BMI and then finally agreed to running bloods.
I asked what he had requested and he informed me that it was
TSH, Vit D, B12 and Iron.
When I questioned why he was not doing my T4 or even T3 he said they were not needed to see how I was. Armed with all the information you lovely peeps provided me with didn't make the slightest difference.
Off the phone I sat and cried then called the receptionist back to book in my bloods.
21st March is the earliest they can be done because he had not put them down as urgent. 4 whole more weeks of feeling this rubbish.
Gosh I'm so sorry. "Everyone is feeling tired at the moment" ???? This makes me so angry. Such gaslighting. They really do believe we're just being dramatic don't they? If they could live one day in the shoes of an undermedicated hypothyroid patient...!
Do you have the means to go private? I can recommend an excellent Dr if you can who does everything via video chat so you can see her from anywhere. She told me she "doesn't care what TSH is doing because its largely irrelevant". She has a few weeks wait for appointments but if you'd like me to give details you can PM x
Didn't accept it so contacted the doctors for a second opinion today and managed to get my bloods moved forward to the 4th March. Only a small win but I fought the battle just a little bit.
I saw my NHS GP recently who - when I said I was feeling so tired I was sleeping 16 hours a day and not leaving my house - asked me how much exercise I was doing. When I said "None, I'm physically incapable"..... told me I should start exercising.... and drinking chamomile tea or having a bath before bed......
But my TSH is ~nOrMaL~ so I got sent on my way.
Thank god for private doctors who actually have a clue.
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Confused - why are my antibodies still so high?
so tired….
So tired... 
So tired I feel sick !!!!
