Thyroidectomy 10 years ago due to large multi modular toxic goitre compressing on windpipe,
Have been prescribed 150 micro levothyroxine since than and have been generally ok
My TSH has always been suppressed but I have never felt over medicated after recent test results GP has reduced me to 125 micro and my TSH has now gone lower again have now been referred to
Endocrinologist but can any one explain why this would happen
Here are my latest results and all the ranges are the same
July 7th TSH 0.07 (0.35-5.5) Reduced to 125 micro levothyroxine
T4 .15 (9-23)
T3. 4.1. (3.5-6.5)
Mar 31st. Taking 150 micro levothyroxine
TSH. 0.20. T4 18. T3 3.5
mar 8th taking 150 micro levothyroxine
TSH only tested 0.06
why has TSH gone down when I’m taking less levothyroxine please help me to understand
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Tatty10
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If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with themand their families and carers or guardian. "
when did you last see your endocrinologist? I’m wondering if your endo is a diabetes specialist rather than a thyroid specialist (many are). I’m very surprised your Levo dose was lowered as your FT3 is very low in the range.
hi I last saw an endo more than 9 years ago, I now have a telephone assessment with an endo in 3 months time, it’s my gp who is instigating the levo reduction, taking no notice of my reluctance to and ignoring the fact that I feel ok.
I would refuse lowering on TSH alone, as FT3 and FT4 are within range (and FT3 extremely low in range). Ask GP (in first instance) to test key thyroid vitamins (ferritin, folate, B12 and vitamin D).
yes I tried reasoning with my gp even to the point of crying but they would not budge I will try to get an appointment to get the blood test for ferritin folate b12 and vit d but don’t hold a lot of hope.
if GP refuses vitamin tests, you can look to do this privately, as many members (myself included) do.
You could ‘gamble’ and say to your GP that you will follow their advice to reduce if the endocrinologist agrees with their opinion (🤞the endo will disagree), but until the appointment you are not going to adjust downwards.
Alternatively, I’d look to change to a more enlightened GP practice/ look to see a private endocrinologist (supportive of combination treatment). I too am a poor converter and have hugely benefited from the addition of some Liothyronine to my Levothyroxine to raise FT3.
After I had my thyroid removed I came home with a letter from the professor surgeon stating that my TSH should always be supressed also one was sent to my GP. I never have any problems with my low TSH because when I move I always show the letter to the new GP.
They cannot argue with a top professor surgeon. Can't you source your own Levo and go back to 150 that would keep you feeling well. I notice on your profile page you had a Porcelain Gallbladder, rare too. I also had one back in 2006 when mine was removed. It was explained to me that it was caused by very low Vitamins D levels. It causes the calcium to build you in different places including the soft tissues. Mine were all shaped like tiny rugby balls. I hope that you find answers. MY TSH is around 0.05 so low but here in France they don't appear to worry too much about that.
hi thanks for the info, I can source some levo but scared to in case they lower my dose even more, wish I could ask for the same letter you have, I’ve also had a bowel resection done 2 years ago for stage 1 bowel cancer and just don’t want any more hassle in my life
I agree with you trying to keep out of trouble if we can. I couldn't go through the agro of pleading with the GP or Endos so I started myself on Thyroid s which I have been on for years now. I do visit the GP once every five months for a prescription of Levo plus T3 but I never use it. NDT is banned here in France so I keep quiet. I hope you stay well and good luck.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 times more powerful than T4.
T4 - Levothyroxine is basically inert and a storage hormone that needs to be converted in your liver / gut into T3 the active hormone that runs all our bodily functions and responsible for the synchronisation of both physical, mental, emotional, psychological and spiritual well being, our inner central heating system and our metabolism.
The TSH once on any form of thyroid hormone replacement is the least reliable measure of anything and since you haven't a thyroid - what is the Thyroid Stimulating Hormone meant to be stimulating anyway - ?
Your Hypothalamus-Pituitary-Thyroid feedback loop - the HPT axis - on which the TSH reading relies on working is now a very unreliable measure of anything as this loop is now not complete, as there is no thyroid, and not the closed circuit as nature intended.
We generally feel best when our T4 is in the top quadrant of the range as this should in theory convert to a decent level of T3 at around a 1/4 ratio - T3/T4.
Currently your T4 is at only 43% through the range with a T3 struggling at around 20% :
The previous results gives us a higher T4 at 64% through the range but your T3 is at 0 % :
In order for the T4 to be converted well in the body into T3 we do need optimal levels of ferritin, folate, B12 and vitamin D - so if your core strength vitamins and minerals are not maintained at optimal levels this could be compounding your health issues further.
Conversion of T4 into T3 can also be compromised by any physiological stress ( emotional or physical ) inflammation, depression, dieting and ageing - so a bit harder to control but worth mentioning.
Some people can get by on T4 monotherapy.
Some people find that T4 seems to stops working well for them at some point in time and find by adding in a little T3 they are able to restore T3/T4 hormonal balance and feel better.
Some people can't tolerate T4 and need to take T3 only - Liothyronine.
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as the thyroid and derived from pig thyroid, dried and ground down into tablets, referred to as grains.
Currently in primary care doctors can only prescribe T4 thyroid hormone replacement and you need to be assessed by an endocrinologist if you need the additional options.
I see you listed hyperthyroid on your bio - so are you diagnosed with Graves Disease ?
I was undiagnosed hypothyroid for over 3 years, the became very unwell and admitted to hospital with hyper symptoms then diagnosed with a multi modular toxic goitre so large it was compressing on my windpipe so after stabilising my thyroid they decided best treatment would be to have a Thyroidectomy then levo replacement
what I’m really struggling to understand is when I reduced levo, my TSH went even further down, my understanding was that it would go higher
We see this happen quite often, especially if reducing by such a large amount
TSH is made in pituitary. Pituitary needs good level of thyroid hormone
After dose reduction this often causes instability and drop in TSH
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
What vitamin supplements are you currently taking
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before test
Increasing number of members find it smoother/more tolerable to split levothyroxine as two smaller doses, half dose waking, half dose at bedtime.
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Teva upsets many people….but perhaps it suited you better
Are you on dairy free diet or suspect you might be dairy intolerant
Approximately 50% of Hashimoto’s patients find dairy free diet is beneficial
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
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
But for some people (usually if lactose intolerant) Teva is by far the best option
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
as long as TSH remains above 0.04 , studies in this post can be used to argue with GP /Endo's who want to reduce dose : healthunlocked.com/thyroidu... (useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk)
(there are links to lots of other useful post in there too, discussing the subject of Low TSH /Risk vs Quality of Life . It's well worth a read of all of them as there are some useful contributions buried in there which will really help you to form a better argument with GP about the risks as he sees them , and how they relate to YOUR choice about your quality of life. I was 'reduced to far' when i was previously feeing ok and it really messed me up .... had to have a row with GP to get him to very reluctantly agree to put it back up a bit... i basically said i understood and accepted 'the risks' ~ which he has now put on my notes ~ but that having tried the lower dose at his insistence , the 2nd reduction had left me so brain dead / chronically constipated that i would be putting it back up myself anyway.)
if GP is really insistent that the low TSH means you need to reduce dose again NOW ... then mention 'hysteresis' to them ... (this can lead to a long delay in TSH starting to move up again after it's been low ... therefore it's not advisable to keep reducing doses in quick succession due to low TSH when T4 / T3 levels are now ok. and first dose reduction has left you feeling less well than you were before .. much better for GP to wait much longer to see if TSH starts to rise after eg 6 mths , or even longer)
Explanation/ info about hysteresis is in this post (info starts at end of first reply and continues much further down ) : healthunlocked.com/thyroidu....
Hope some of this is useful . Basically , you've just got to get them to see that you do genuinely understand 'the risks' , but lower dose makes you unwell, higher dose allows you to have quality of life , and and so you accept the risks. and that you're not going to try to report them to the GMC for overmedication if you go on to get Atrial Fibrillation / have a stroke / or your bones crumble.
thanks tattybogle, our surgery are still not doing face to face appointments and I’m really not good at explaining all of this on the phone but I’m definitely sticking to my guns this time
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