Since first being diagnosed hypothyroid, my TSH has generally been low. One consultant thought that taking me off completely would sort it out. I was ill for months, lost hair and took a long time to recover. I'm not keen on 'reducing' my dose while my energy levels are okay. Today my doc wants to lower the dose. He said that remaining on the same dose of Levo would risk Thyroid cancer. I stated that my T4 was fine but he said NHS doesn't look at T4/T3 and the best indicator is TSH.
In case you're wondering, the red on the chart indicates weight gain. I'm struggling with this.
What do you all think of this 'TSH is the only thing to look at'?
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Gerry1969
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I’m not surprised! Mine told me I’d get bulgy eyes if I didn’t reduce my dose.
It’s really quite scary what’s happening. There are so few doctors who understand how things work if you take levothyroxine for a thyroid that no longer works.
It’s good that you keep such detailed records as I think you can demonstrate that reducing your dose would make things worse not better. TSH isn’t actually a thyroid hormone test. Your FT4 isn’t over-range and they haven’t even bothered testing T3.
Well it helped when I reeled off the result pattern and consequences of removing Levo. The Doc backpedaled from, "no I'm not prescribing 100" to "okay, I will prescribe it but you can get cancer". I think with my TSH shooting so high so quickly, without Levo 100, there's a predicable risk I'll be seriously ill.
Tell him you do not give consent to a dose change unless he can definitively prove that the dose you are currently taking is having an adverse health effect. That's always been my rebuttal.
It amazes me how drs can say the most stupid things and still breathe! Where do they get this claptrap from?! If we're not pulling our hair out due to their stupid comments, it's falling out from poor medical care!
Your high thyroid antibodies confirms autoimmune thyroid disease aka Hashimoto’s
What vitamin supplements are you taking
When were vitamin D, folate and B12 last tested
Previous post shows ferritin looked ok
Have you had full iron panel test and/or CRP test for inflammation
Are you taking T3 alongside Levo?
If yes …how much
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)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
I had a recent annual review but when I asked if it covered B12 they said no. They won't do it unless something else shows up to require it. Not sure what that means.
You doc is kind of right, high fT4 levels are associated with many cancers. This is a reason to give a little T3, so that fT4 is kept at lower levels. A recent study doi.org/10.3803/EnM.2023.1815 shows that giving TSH suppressive doses of levothyroxine after thyroid cancer increases the risk of other cancers. Out of the frying pan into the fire. More reason to prescribe liothyronine.I'm sure your doctor isn't aware of this research so either he is stupid or lying. You might want to ask him why do they prescribe high doses of levothyroxine thyroid cancer patients, if it causes thyroid cancer?
It would be a good idea to see if you are OK on a lower dose, just to double check. It does look like your TSH goes very low when you have moderate hormone levels, suggesting your pituitary is underperforming.
I'd press to get your pituitary checked, it doesn't look like full on central hypothyroidism but your TSH looks too low for associated fT3, fT4 levels.
Can you help me out with how to 'word' my request? I don't know enough about pituitary to be convincing and I think I'm going to have to be pretty persuasive with this lot.
It does seem a good idea to write a letter with your table perhaps simplified and without the colouring (so they don't think it is about weight). Point out that from 2016 your TSH hasn't adequately responded to low thyroid hormones. Ask for an appointment to discuss getting a referral to an endocrinologist - they might give you a referral rather than having to give you an appointment.
Check out the Stop the Madness website. Janie Bowthorpe explains why focussing on TSH only is plain wrong. My TSH is always incredibly low and I’m on Levo and Erfa and have been for 19 years.
The reason I remained undiagnosed and suffering for almost two decades was because the NHS is fixated on TSH alone. I have central hypothyroidism (something wrong at pituitary or hypothalamus level not thyroid gland) so my condition was totally missed as TSH is always normal despite FT4 dropping through the range.
I was diagnosed as having somatisation (all in your head) and this is still on my medical record despite the reason for all my signs and symptoms having been recently diagnosed.
This fixation on TSH alone is causing great harm, not only for people who are receiving treatment but also for those who remain undiagnosed and untreated, of which I believe there are many. Perhaps some misdiagnosed with chronic fatigue syndrome, somatization etc. could have central hypothyroidism? I think the fixation on TSH means that central hypothyroidism is seen as rare but that this is only because it is rarely diagnosed.
My monitoring now that I am on Levothyroxine is already causing problems as the NHS laboratory will only test FT4 and FT3 if TSH is abnormal. My TSH at present is normal but it's necessary to see where my FT4 and FT3 are due to my central hypothyroidism. (FT4 8.8% most recently with TSH 0.7 - done privately of course). Explaining why testing TSH alone is a waste of time is like hitting your head against a brick wall!
Until medical training on thyroid conditions improves the harm caused by focusing on TSH alone will only continue with all its attendant suffering and frustration.
Your GP is a liar ! Don't trust GP and stick to the dose that makes you feel well. You can refuse and also ask where it days that long term use of levothyroxine at the dose you are taking causes thyroid cancer ?! Because if that was true all of us would be having a diagnosis of thyroid cancer !! :/ Did you make sure you had an early morning blood test ? Fast before the test and no levothyroxine for 20 to 24 hours before the test ?? 🤔
I got an 8.30am blood test. I didn't take my Levo until after.
I've dropped off a letter saying I don't consent to having my meds changed without knowing why my results are unusual and that I don't want to use the 'try it and see' method as it takes months to recover.
Putting aside all the nonsense your Gp is spouting and ignoring the TSH which is the least useful marker of all, what your excellent spreadsheet clearly shows that you are generally a poor converter from T4 to T3 and could probably do with adding T3 rather than more levo especially that your T3 has never been anywhere near optimal and no wonder you are gaining weight.
Presumably TPO antibodies are over range when tested in Aug 2021
This confirms cause of your hypothyroidism is autoimmune thyroid disease
ESSENTIAL to test vitamin D, folate, B12 and ferritin at least annually
What vitamin supplements are you taking?
Have you had coeliac blood test too?
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
Thanks for all the info. I did a food intolerance test a while ago. I'm not gluten intolerant. Dairy came up as a problem. I use replacement milk alternatives now.
The only way to absolutely know if you are gluten intolerant is to try it
Dairy free - are you avoiding all dairy, checking ingredients lists etc. No butter, cheese etc
if dairy intolerant you likely to need lactose free levothyroxine
Is your levothyroxine lactose free?
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Vencamil is lactose free and mannitol free. originally only available as 100mcg only, but 25mcg and 50mcg tablets became available Sept 2024
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Very Low TSH but higher T4 + how to add in T3:
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T4 unchanging on Levothyroxine - is this normal?
Help Interpreting Results Please - Normal TSH, Low T4
Low T3 Low T4 and very Low TSH
