- I was diagnosed with hypothyroidism in March 2024 (TSH 8.8milliunit/L; thyroid peroxidase antibodies 889IU/L). My TSH reduced to 4mU/L on 50mcg levothyroxine once a day. As we’re trying to conceive, we needed it to be less than 2.5mU/L.
- GP increase my dose to 100mcg levo & my TSH reduced to 0.09mU/L
- Dose reduced to 75mcg levo & TSH dropped to 0.02mU/L
- GP moved me back down to 50mcg levo, TSH increased to 11mU/L
- Levo was then increased to 75mcg & 6 weeks later my TSH was 74mU/L (8am test). This was retested 2 days later at 5pm, and my TSH was 40mU/L. The following day at 5pm, TSH was 35mU/L (GP wanted to see if it was a lab error)
I take my levothyroxine at 1 hour before food & caffeine, and the only supplements I’m on are vitamin D & folate which are both taken at night.
I’m currently being managed through my GP. Coeliac blood test was negative 2 weeks ago. I’ve been referred to an endocrinologist, however I’m not sure what the waiting time will be.
I’m back on 100mcg levo with bloods planned for 6 weeks time.
Any thoughts very welcome!
Written by
B1uberry
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Just checking that you only drink water in the 1 hour after taking Levo and dont take anything else at the same time?
It might just be that you have Hashimoto's and your levels are swinging as you are in the early stages of the disease. This is quite common.
Even though your coeliac blood test was negative its still worth trialling a strictly gluten free diet. Some people also benefit from removing dairy from their diet.
What were your vitamin levels that were tested? Do you have results for ferritin & B12?
WE need optimal vitamin levels for our thyroid hormone to work well.
How much vit D do you take?
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Thanks for the response. Apologies I’ve only just found this website today, so I’m just researching previous posts / profile etc.
Take my levo with water.
B12 was 440ng/L (RR 160-800)
At time of my most recent bloods, I was on 40ug vitamin D tablets once a day - now I’m on 5000IU D3 (125mcg) softgels
I’m reading about brand on here and I haven’t kept track of this - I’ll do some research on this forum and discuss it with my GP. It sounds like different brands suit different individuals
I'm assuming you're on prescribed folic acid. Once that finishes you will need to buy your own supplement otherwise yoru level will simply slowly fall back to where it was initially.
Optimal serum B12 is 500++ so you would benefit from a B12 supplement. You could start with a sublingual or spray, then once the folic acid prescription is finished switch to a B complex which contains both B12 & folate + all the other B's to help keep them balanced.
Your doctor is causing many of your problems by making changes to dose that are far too big, testing far too soon, and she is dosing by TSH.
50mcg --> 100 --> 75 --> 50 --> 75 --> 100
Since you've mentioned the time of day for some of your tests I'm assuming that you are aware that time of day affects TSH.
Please get your blood draws done by 8 - 9am, and refuse testing if a doctor wants a blood draw done much later in the day. It would also be worth sticking to the same time of day for the test if you can achieve that. (Receptionists making the bookings can be awkward about giving people the time they want, in my experience.)
And I really don't know what your doctor hopes to achieve by testing 2 days and then 1 day after a dose change. Thyroid hormones take several weeks to settle after a dose change.
In the early days of treating hypothyroidism we would suggest no changes in dose greater than 25mcg per day in either direction.
When things appear to be settling down and the patient is beginning to feel better we would usually suggest dose changes be no more than 12.5mcg per day in either direction.
Biotin supplements can distort test results for almost anything and everything. If dose of biotin is fairly small then stop taking it for 1 - 2 days before a blood draw. If you are taking a high dose stop taking biotin for 5 - 7 days before blood draw. Be aware that B Complex supplements usually contain biotin.
Oh, one other thing... Doctors often imply in some of their consultations with patients with thyroid disease that thyroid hormones are dangerous, and they tend to panic and flap about very low TSH. Thyroid hormones are not dangerous, at least at "normal" levels of thyroid hormones. People have tried to commit suicide with Levothyroxine and have never succeeded even with enormous doses.
I asked the GP about timing of tests 3 times and they said it didn’t matter - I’ll know going forward, thank you.
The GP had wanted to drop me initially from 75 to 25 & I had to have a consult with a different GP as I was worried this would be too big a jump (as I suspect 50 —> 100 was too big).
Between my TSH being 74/ 40/ 35 over 3 days, my GP didn’t actually change my dosage - I suspect he was trying to see if there was a lab error. But as you mentioned, timings of the tests weren’t consistent either.
My folate is prescribed by the GP.
Definitely managed by a GP, but I’ve not consistently been treated by the same doctor - and all seem to have different opinions!
From reading this forum, I need to research brands and request a specific one.
Doctors seem to be under the impression that TSH is the same 24 hours a day. But it very clearly isn't! We suggest 8am - 9am for testing because it is the time of day when TSH is at its highest.
My surgery receptionists tell me that time is unimportant for thyroid testing and refuse to give me a morning blood draw, they always insist on giving me an afternoon test when TSH is at its lowest. I don't use the NHS for anything to do with my thyroid as a result.
I'd ask for an antibodies test. If you have Hashimotos, it's auto immune. Essentially your body is absorbing your thyroid so your results will be up and down. But the downward trend on TSH will be up as eventually the thyroid will stop producing. You'll be under active, then overactive but the trend is under active e.g high TSH.
I find I'm better when my TSH is under 1, its also important to look at the conversion to T4, T3. We don't need the TSH, that's what our bodies use to convert to what we actually need. I'm really confused at your results, as this seems really high but maybe you're using a different system of measurement?
I found the best person in my practice was a nurse practitioner who had actually taken specific training around thyroid
Hello, welcome. How are you feeling? Hope not too bad. I was a sobbing exhausted jibbering wreck at the start.
Your TSH levels could just be "wonky" ....TSH comes from pituitary gland. TSH is supposed to move slowly?
Even if it is T4 and T3 being released as thyroid glands are dying (hashi swing) I am surprised TSH is moving so "violently"
Your results do look odd. I am not suprised your doctor retested so quickly. For fine tuning the time off day does matter but this is far from fine tuning.
Test T3 levels and T4 levels. These are actual thyroid hormones. Ask doctor to do urgently if they have not done already.
You can get home blood test on amazon for next day delivery.(Randox) Sample Monday morning and post in and have results mid week for less than £30.
I was on biotin, it did mot move my results this much. I read up on it.
I have autoimmune underactive and have been pretty well once I got above 100mg after a few months. My TSH was 79 at start.
I cannot tolerate gluten but did not show on blood test. Surprised if it would not swing your TSH though. Have you got brain capacity to trial gluten free?
A lot of people on here are the 10 to 15%who are not well on just T4/levo. Reading this forum scared me at first until I understood most are OK. This is a great place to learn about worst cases.
Good luck. If you can through the brain fog let us know how you get on.
Rest and let your body recover, it takes time once you have thyroid hormones for things to repair.
Hello, thank you for your kind response. Honestly, I feel rubbish. I work shifts & in a busy profession, so I thought the brain fog was work-related. But I have definitely felt worse the last 4 weeks - I didn’t even think to put it down to my thyroid, I just thought it was work-related.
My thyroid was diagnosed following blood tests as we are struggling to conceive - so the TSH at 74mU/L (and then 40 & 35) has been a blow - especially because prior to starting levo my TSH was 8.8mU/L & 6.28mU/L (two blood tests were takin 1 month apart prior to starting levo).
I just don’t understand why I have increased so much. And equally, in June/ July 24 I was on 100mcg levo my TSH was 0.09mU/L, dose reduced to 75mcg & TSH reduced to 0.02mU/L. I’ve updated my results so far in my bio.
I have intermittently had T4 & T3 blood results after asking my GP - not at every TSH blood test but at some. I’m going to try to push for an NHS endocrinologist referral, especially with the effect on fertility, however I have a private consult end of Nov - the sustainability of private treatment may be hard financially.
Good you have T4 and T3 registering. I was below 3 on T4 for quite a while. Only ever privately done T3.
I wonder if levo has given energy to your body to finish of your thyroid which then releases T4 and T3. Doctor dropped dose but then it stopped and you are starting to level out?
A bit over range on T4 for a short time is not bad.
I never went private but sorted out plans in case. What I learn on here has stopped me wanting to see an Endo. You can ask for feedback by private message on here for whoever you are seeing.
I’m going to try to push for an NHS endocrinologist referral, especially with the effect on fertility, however I have a private consult end of Nov -
NHS referral typically is at least a year’s wait
Most endocrinologists are diabetes specialists
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 so that might eventually transfer to NHS
Evaluation at another laboratory showed normal levels of TSH, raising the possibility of interfering substances. TSH levels were normalised with the addition of mouse serum to the patient's sample, confirming the presence of human anti‐mouse antibodies as the interfering substance in the TSH assay.
You also need vitamin D, B12 and ferritin levels tested
Now you have had coeliac blood test you can trial strictly gluten free diet for at least 3-6 months
You need to pay attention to brand of levothyroxine
Many thyroid patients find different brands are not interchangeable
Which brand are you currently taking
Food intolerances
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
As your coeliac test is negative you can immediately go on strictly gluten free diet
Trying gluten free diet for 3-6 months. If no noticeable improvement retest TPO antibodies….see if reducing
You could reintroduce gluten and see if symptoms get worse
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
Hi I had something similar happening related to the anti bodies. I saw an endocrinologist who recommended to dose by weight @ 1.6 mcg per kilogram of weight. I’ve been good since then. Endo wrote to GP to say ignore TSH when testing and stick to the formula.
I’ve had GPs try to reduce since with drastic effects so I just whip out my endo letter now and say no I’m not reducing
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How long until results are stable?
Levo increase
Abnormal Test Results 
Please can you look at my results and advise?
T3 taken away, looking for a new source please :)
