Hello. I posted recently about chest pains. Turns out it was my acid reflux causing the issues. I’m still working on how to manage this without PPI’s . However my latest blood test results my TSH was suppressed and my GP has asked me to reduce my dosage from 125mg to 100mg. I do feel less anxious on 100 mg but now with my follow up results giving a TSH from 0.01 now to 0.07 they have said it’s going in the right direction but has asked me to reduce my dosage again. I don’t have a thyroid and I thought 100 was the starting dose. Should I be resistant to do this because I don’t have a lot of Hypo symptoms.. or has anyone without a thyroid been on a lower than 100 dose.
Any advice on this?
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Bettle7
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Dose adjustment should not be made based on just testing TSH, it is not a thyroid hormone it is a signal from the pituitary to the thyroid to make hormone when it detects there is not enough. The thyroid hormones are FT4 and FT3 and these are the tests that are important and what the decision to adjust dose should be based on. FT3 is the most important test as this measures the active hormone that is available for the cells to use (T4 is a storage hormone and needs to convert to T3 which is the active hormone that every cell in our bodies need).
In your situation I would refuse a further reduction until TSH, FT4 and FT3 have all been tested at the same time.
Show the following to your doctor in support:
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, wrote the following in Pulse magazine (the professional magazine for doctors):
“The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This ‘exogenous subclinical hyperthyroidism ’ is not dangerous as long as serum T3 is unequivocally normal.”
You can obtain a copy of the article by emailing Dionne at ThyroidUK, print it and highlight Question 6 to show your GP.
Thanks so much for your response. I will use this to support not reducing. When I change doses or even brands I notice the differences in how my muscles ache, headaches or brain fog or concentration so I’m not in a rush to do anything different now that I’m feeling 85% normal.
I had partial removal and after being on a full replacement dose for 10 years my thyroid no longer produces hormone so I'm sensitive to any changes in potency or dose changes. I encountered this problem with my GP wanting to lower my Levo because my FT4 was over range, however my TSH was still over 1 so I didn't get the TSH talk but he came to the conclusion that I was on too much hormone. I had to explain to him that when he lowers my hormone that I can't get out of bed, work or do simple hygiene like brushing my teeth. No one knows how much hormone you need except for you, not that doctor, so absolutely refuse if you feel fine on 125mcg. Also, you could try 125mcg on 5 or 6 days and 100mcg on 1 or 2 days. When you don't have a thyroid or functioning thyroid then every little bit counts. I've just learned after 10 years of struggling that you need more hormone during the cold months.
Thanks. I will experiment with the alternate doses slowly as I notice the differences until I settle into a routine for over a month. But I do feel more energetic on higher doses. Oh I never thought of different doses depending on the weather. Why do we need more in colder months?
It's something to look out for if you feel sluggish in the winter. 🤗 I'm a petite and thin woman so I take 88mcg with a few days on 100mcg. The rest of my thyroid does not produce hormone so this is a full replacement dose for me but I would imagine the average person with no thyroid will need more, which is why your GP shouldn't be reducing your dose if it makes you feel poorly. Best wishes and recovery.
Thanks I will keep this in mind (memory permitting- lol). Best wishes on your journey as well. It’s amazing the struggles that we go through just because of our thyroid’s.
Thanks so much I didn’t realise low and high stomach acid had the same symptoms. I will look into the Kefir and probiotics/prebiotic and all the links mentioned to read up about this.
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
T4 and T3 levels are personal but I've always felt the most functional when my FT4 is at 25 which gives me the highest FT3. If you feel a little anxiety on 125mcg daily then you might feel better alternating.
Thanks.. it really is trial and error to see what works. On my lower dose without alternating im more forgetful but higher doses less fatigue and brain fog but a bit more anxious so yes it’s about getting the right balance. Have a lovely weekend
I don’t have a thyroid now and I’m on 75mcg snd I know I need to be increased but my endo is insisting that I leave it a while longer, however I feel differently but I don’t want to antagonise him, which is always a consideration. If he doesn’t increase it for my next appointment I may be looking elsewhere for a consultant.
I’ve been on 75 for around 4 months now and I have to say I do feel slightly better but I know that if I could have 100 I would improve. My hair is still coming out in handfuls, muscles ache, and nails are really ridged but I have recently started back at the gym, 3 months ago I struggled to even think about doing that. I go first thing in the morning and I do have to push myself but I do feel better after it, however I could sleep for Britain in the afternoons but I am slowly taking in more vitamins. B12, iron, vit C and D, folate will be my next supplement.
Yeah on the lower dose I’m more sluggish and have a lot of muscle pain and brain fog. when I do my 10k steps it takes a while to recover. When I’m on 125 though I do get more anxious but I’m energetic.. well done on going back to the gym. I haven’t supplemented with vitamins for a while as my levels are normal but will do a check on my levels soon.. let me know if you ever change doses.. or you are okay on this dose.
I think I need an increase as I’m very tired all of the time apart from about an hour after the gym, I do feel energised. I’m hoping for an increase after my next appointment in August
A long time ago, a GP "diagnosed" silent reflux (I think it was trendy at the time) and prescribed Gaviscon. I still experience a dull pressure around the heart, lasting a fortnight or so, once or twice a year. It recurred with COVID-19.
The pain was more on the right side and like pulsating but then recently it’s like upper under chest pain like uncomfortable feeling.. hardly any burning sensation but bloating feeling. So had a scan and waiting on my results on that.
Thanks. I was surprised at the time that my GP seemed so hooked on the reflux diagnosis. After over 20 years I've matched up with a consultant who seems to give a damn, and hope to get a scan before too long.
Hi Bettle I had my thyroid removed Oct 2018 and currently on 75mg and 100mg every 2nd morning I don't take vitamins until 4hrs after my eltroxin ...checking bloods in July..every 3 mths at the moment as I have a very thorough doctor..I will keep you posted on if they change it ..I do get joint pains and migraines ...migraines maybe 2 a month but apart from that I'm OK..hope this helps
Thanks for letting me know. When I tried splitting my doses throughout the day as I couldn’t tolerate Teva at that time I had lots of migraines and was always flush in my face but on higher doses the migraines stopped but I still get headaches every week but not every day. I’m now on a different brand that’s easier to tolerate. I guess you can be on a dose lower than 100 but it depends on how well you actually are feeling and your blood test results. When I had my surgery the doctors said 100 was a starting dose so I’m just surprised people without a thyroid can actually be on a lower dose and feel ok. That’s interesting. Thanks much
Your free T3 is not optimal, I've had a similar issue and was advised that T3 should be at least 60% through range yours is not. Since you are having symptoms it sounds like you have poor conversion. There are some wonderful Admins on here who may be able to help, vitamins and minerals need to be optimal to aid conversion. Unfortunately, for some, especially those of us without a thyroid, adding T3 is the answer, but that is not easy under current rules. Look at posts regarding vitamins and minerals, that is something you can work on straight away. You certainly don't need reduced meds!
Thanks Jones. Before the pandemic I was due to see a specialist but had one appointment and the others were cancelled due to COVID. I haven’t sourced T3 as I haven’t been brave enough to go on that journey by privately requesting this. I will do a medichecks test to recheck my T3 and start looking at my vitamin levels.. I actually thought these were fine but do you think these need to improve to help my T3 conversion?
They all need to be optimal, if you have had results post them and there are some wonderful, knowledgeable people that will help guide you. I rely on them myself. I'm waiting to have my next set of blood tests, so mine will be up soon. All the best.
I have replied to you before and can only repeat what I've said before.
What I can add is that the accepted conversion ratio when on T4 Levothyroxine only - is said to be 1 - 3.50 -4.50 T3/T4 with most people feeliing at their best when at around 4 or under.
So to find out how well you convert the T4 into T3 you simply divide your T3 into your T4 :
On 125 mcg T4 your T3 was 4.20 and your T4 26.70 so your conversion ratio is coming in at around 6.35 : please check these figures for me :
So this is way outsde the accepted conversion ratio and I would suggest you would benefit with a reduction in your T4 medication BUT WITH the introduction of a prescription for T3 :
T3 - Liothyronine is around 4 times more powerful than T4 and since you have " lost " your own natural thyroid hormone production. which is said to around 100 mcg T4 + 10 mcg T3 daily, adding in this small proportion of T3 will rebalance your thyroid hormones.
This will need to be sanctioned by an endocrinologist and suggest you email Thyroid UK, the charity who support this amazing forum and ask for the list of " sympathetic endo's and specialists " who will be more inclined to help you, as currently, in some parts of the country T3 isn't being prescribed.
Obviously if you can go privately, and cut through the red tape a little, this may see you better served more quickly, but please try and ensure that whoever you see, is an endocrinologist and prescribing and believing in more than just monotherapy with Levothyroxine.
Hi Pennyannie, thanks for your response. If you have responded before I can’t quiet remember.. Anyways I was meant to see an Endo before the pandemic but this was cancelled and then I was feeling more or less ok.. but recently a few issues. I guess I’m worried about introducing T3 if not under the guide of an Endo as it has taken me so long to feel ok. I have now reduced my dose to 100mg so I need to get retested in a few weeks to see my new results.. thanks for explaining the conversion and I will follow up on this.
OK then - you can read all your previous posts and replies if you wish :
Just go back to your profile page by pressing the icon in the top right hand corner of this screen - saying " More " and maybe press again for your profile page :
I know it's difficult remembering things when brain fogged, and i didn't realise we had this facility to look back, until well into my thyroid journey.
Exactly, there is little point doing it for yourself until you feel you can, and no one needs more stress. So think about asking for a referral to someone who we have had good feedback on and who will be able to help you.
I know it's difficult as we trust our doctors but it does seem that their hands are pretty much tied - 20 odd years ago both you and I would have been offered T3 in primary care by our own doctor.
T3 - Liothyronine has only been removed because of the NHS purchasing policy - in mainland Europe T3 is prescribed especially for thyroidectomy patients, and cost a fraction of the price that the NHS is paying.
It's not to do with Brexit but sourcing policies and we have raised a petition in Parliament challenging the NHS policy which has now moved up to the House of Lords and with the current Covid situation - I guess we are considered " small fry " :
There is more information on the Thyroid uk website should you wish to read further:
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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