Hi I've recently joined and very interested to see so many interesting posts.
I wanted to ask if others with no thyroid are on such a low dose of Levothyroxine.
In 2014 following a thyroidectomy I was started on 150mg and have been reduced steadily down and am now on 50mg as my TSH each time reduces to abnormal - and did this before I had an extremely large multinodular goitre removed (had grown into chest cavity). My tiredness has increased each time and recently I have started to wake with headaches, dizziness and real difficulty in motivating. My appetite is much reduced and I'm losing weight, taking no exercise (no energy) and have pins and needles (strong) in both hands and up arms, a tingle has started in my feet too. I have it confirmed that this is not indicative of diabetes in any form as blood results are good, my heart is also good and strong. I take liquid Vit D, B complex and Fish Oil plus bloodpressure meds (Felodopin 10mg) and sleep really well as given a CPAP machine after thyroidectomy.
I take my levo in the morning and am worried that this is not the right drug for me. I know alternatives are expensive and the NHS is predisposed to avoiding expense. Any advice or insight gratefully received.
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CernCrystal
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50mcgs Levo is really just a STARTER dose so yes is very low for someone with no thyroid. Sounds like you are being dosed by your TSH which is not always a reliable way although the NHS thinks it is.
First thing to do is get a printed copy of your last results from GP reception which you are legally entitled to. If you are in England you can get the NHS app and some surgeries can give access to test results on that if you ask reception. Post results here when you have them.
Have you had vitamin levels checked lately? If not get tests for ferritin, folate, B12 & D3. Hypo people have low stomach acid and cant absorb vitamins well.
Have your sleep clinic checked your CPAP machine is set at the correct settings? Whats your average AHI?
Thank you - I have additional bloods booked on Monday so will check, the Dr has looked for diabetes and this time I understand Coeliacs which I'm sure I don't have. I joined the EMIS system so can see my recent results which are all normal apart from creatinine and haemoglobin which are both abnormal (higher). TSH on 50mcg is now normal. But I'm not!
Will do - thanks Jaydee, just got a meeting starting soon but will find and put on - they are all listed individually. So lucky I can work from home! I've also just emailed the Sleep people about the CPAP as I haven't had a review since Covid started. My oxygen levels on 12th Dec were good though - 98% and I suspect the machine is still working well for me but good to check as Dr can use that as excuse not to proceed. Overwhelmed by kind responses - thank you so much. Feel really held, not alone and can let my son (Aspergers and is terrified by what he sees happening) that there is a way forward.
There are apps for some of the cpap machines depending what make yours is. Mine is a Resmed and I can check each day how mask fit is and if ahi is good.
Also, you should be getting a new mask at least annually.
Love my CPAP - it is a phillips repirinator (or something). I didn't sign up for the online app as they take your date and use it and you have to agree - not annonymous which I felt uncomfortable with as they wouldn't say the 3rd parties they share it with. But will explore others - I hadn't realise there were others. I do get a mask every year - even tried the foamy one one year (present from Papa as I arrived for respite care week without the mask! Amazon delivered same day!) but they don't last long. Very comfortable though. Can't believe how many people get them, hate them and don't use them. Lifeline and sleep is so good now.
Hi results so far: NOt sure how useful but will get more hopefully by end of week.
In Nov 22 my TSH was : 0.22 (range 0.27-4.2) and Serum free T4 20.5 (range 12-22)
Consequently my Levo was reduced from 75 mcg down to 50 mcg
On 6th Feb my TSH was retested: 0.82
All other tests she did were within range except:
serum creatinine 90 (range 45-84)
haemoglobin estimation 152 (range 120 – 150)
but T3 and T4 not tested and vitamins not done. She has requested further tests for Monday but for the life of me I cannot remember what they are for – suspect vitamins and coeliac.
What time of day was your blood test and did you take Levo AFTER the test that day? Recommend leaving 24hrs before blood draw and do test fasting at 9am when TSH is highest.
Those results on the face of it aren't bad, BUT we really need to see your FT3 which is the active hormone that will actually give you some energy. The NHS rarely agree to test this so members of this group buy private tests to see th results that they need. Monitor my Health is the cheapest if you're OK with finger prick tests and Thyroid UK offer a discount code.
If GP doesn't test your vitamins this week and or you need a blood draw then Medichecks are pretty good, same with discount code. You need ferritin, folate, B12 & D3 results with ranges.
Thanks so much Jaydee. Tests are when ever they offer - so hard to get appts. Mondays is noon. Will fast for levo and vitamin supplements as advised. Can I let you know new results when I get them? Thanks so much.
Tell them you have work and can only do 9am, wait for the right time. GPs dose by TSH so its really important your test is done at the right time when TSH is highest.
Just start a new post when you get the results, I'm here every day. Ask on Monday if they can add the vitamin ones.
Thank you Helvella - really interesting, and echoes the problems with generic prescribing - particularly that most doses and clinical trials have been done on men - or where women used, the data amalgamated and not separated by sex. I feel awful so something is seriously wrong and dosing should not be reliant on Free TSH. I can definitely use that! So many lovely and kind people on here. Cannot believe I had 7 replies within an hour!
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calcitonin + plus a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 times more powerful than T4 :
Without a thyroid it is essential that you are dosed and monitored on your Free T3 and your Free T4 readings and not on a TSH reading seen in isolation which I'm afraid is all you are likely to get in primary care and I afraid you may need to pay for the appropriate blood tests and become your own best advocate.
The thyroid is a major gland and responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
When your metabolism is slowed down too much your body will struggle to function and you will have little or no appetite, low stomach acid and extracting key nutrients through your food will be difficult and your core strength vitamins and minerals, those of ferritin, folate, B12 and vitamin D will not be compromised and compounding your health issues even further.
Thyroid UK the charity who supports this forum - thyroiduk.org - have a page on their website detailing private companies who can run a full thyroid panel for you which can include the vitamins and minerals - I believe Blue Horizon and Medichecls offer a nurse home visit ' extra ' and between them cover the country and I find this the least stressful way of arranging my yearly thyroid panel.
If taking any supplements leave these off for around a week before the blood test appointment and arrange this for as early as possible in the morning.
Fast over night and just take water until after the blood draw and then take your daily dose of T4 thereby leaving around a 24 hour window from last dose of T4 to blood draw.
Do you take any other prescription medications and do you take your T4 as instructed on the PIL - on an empty stomach, with a full glass of water and wait fo around an hour before eating or drinking anything?
When with the results we can explain everything and advise on your next best steps back to better thyroid health care.
I very much doubt that you are ' possible hypothyroidism ' and think it's likely that you are very definitely hypothyroid and many of your disabling symptoms will be alleviated once you are optimally medicated and looked after.
Thanks so much for all this - yes I take levo in the morning (other drugs and supplements at night) and leave 30 mins before my cup of tea. Will leave for 60 as you suggest to see if that improves things. I will look at having private tests too, once I understand all the complexities (and have saved up). My Dr is getting me blood tests for vitamins (will check which ones) on Monday and I will again challenge to see if I can see an endocrinologist as I've never seen one and my body had strange results long before thyroid removed. Having seen several mentions the B vitamins I was interested to see that all my symptoms match advanced B12 deficiency - which is interesting as I take it every other day - and eat a good diet, although not a lot at mo as no apetite. Thanks once again for your support. Everyone is so kind on here.
Thanks SlowDragon - After obvious problems with bread (and flour based items) I've cut it out of my diet as much as possible which has been lovely for all around me!! Interestingly I checked the vitamins people mentioned - hadn't occurred to me that this could be something as simple as a vitamin deficiency as I feel so unwell - and I match all the symptoms for B12 deficiency. Will def get that checked out. I will adjust how they do the tests - as you recommend thank you and ensure they are testing for all those vitamins on Monday. Gosh can't tell you how supported I feel now. Thank you!!
Gluten free diet needs to be absolutely strictly gluten free to be effective
Watch out for cross contamination
Don’t share butter, jams, cutting boards etc
Read ALL labels
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
Similarly perhaps in few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
Hi thanks for replying - not sure if these make sense. These are the results I have so far.
In Nov 22 my TSH was : 0.22 (range 0.27-4.2) and Serum free T4 20.5 (range 12-22)
Consequently my Levo was reduced from 75 mcg down to 50 mcg
On 6th Feb my TSH was retested: 0.82
All other tests she did were within range except:
serum creatinine 90 (range 45-84)
haemoglobin estimation 152 (range 120 – 150)
but T3 and T4 not tested and vitamins not done. She has requested further tests for Monday but for the life of me I cannot remember what they are for – suspect vitamins and coeliac.
TSH abnormal. I'm challenging to get it redone with T4 and T3, plus at the right time of day (not noon) and with Biotin fasting (as per NHS advice). Dr calling this afternoon - fingers crossed. If no joy will pay for private tests and then get them to review. This site is a revelation, so much good info. Now realising how complex our systems are too. Lovely to have this support out there.
My doctor always thinks my TSH is abnormal but I don't agree and if T4 and T3 are in range, plus you are asymptomatic, then don't mess with the dose.Karen
possibly a bit too late if GP has already you rung today .. but this will come in useful to argue for your dose to be put back up to 75mcg despite TSH being 0.22 when previously on 75mcg healthunlocked.com/thyroidu....
Thanks for this - she has agreed to redo TSH (and T4 and T3 if surgery agree to it) next Monday morning at 7:30am which will allow me to instigate appropriate drug fasting in advance. Following the test (on current 50mcg) she has also agreed to prescribe me an additional 25mcg of Levo to take on alternate days thus increasing my dose to approx 62.5. It is like squeezing water from a stone! I just want to get back to driving and living my best life so that I can support those that rely on me! Thanks for support!
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