Six week ago, my thyroxine was suddenly dropped from 125mg to 75mg. I was totally unaware until I went to collect my new prescription.
This resulted in my being extremely ill, to the point that I had no energy and my joints were very painful, amongst other symptoms, such as immediate weight gain. After a consultation with my doctor, it has been raised to 100 mg.
This is still not enough to bring me back to ‘normal’ health, which still isn’t great! There is no way that they will put me back on my original healthy dose and I’m at a loss as to what to do, to be feel better again.
I’m 77 and I was diagnosed with an underactive thyroid at 35.
Written by
Dordor16
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With a high - but in range - FT4 and a low - but not suppressed - TSH, I can see why a small adjustment might be considered. But only from 125 to 112.5 (or something like that).
A 40% reduction is quite simply incompetence, ignorance, and looks to be very uncaring.
Sometimes changing make has no obvious impact. But other times it can make a real difference.
So that you know what is potentially available, I've linked my UK medicines document below.
helvella - Thyroid Hormone Medicines - UK
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, Dictionary of Medicines and Devices (dm+d), etc. PLUS how to write prescriptions in Appendix F.
Also includes links for anti-thyroid medicines (but not product details).
Adjustments should be by 25mcg at a time. Wrong of practice to drop so much & not discuss with you.
Had you had a recent blood test? GP may be assuming you are over replaced, but it depends on what was tested. You may not have a complete picture.
You are entitled to blood test results, many set up online access or obtain printed copies with lab ranges, usually easiest to ask reception. Say you want to keep a record of results if they were to ask why.
After a consultation with my doctor, it has been raised to 100 mg.
Retest 6-8 weeks after being on this dose
Do you always get same brand
When were vitamin D, folate, ferritin and B12 last tested
What vitamin supplements are you taking
In future NEVER agree to dose reduction unless had FULL thyroid and vitamin testing
If FT3 is not over range you’re not over medicated
Just testing TSH and Ft4 is completely inadequate
Suggest you test vitamin levels NOW
Low vitamin levels tend to lower TSH
what vitamin supplements are you taking
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)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
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 them and their families and carers or guardian. "
Never agree to reducing by more than 25mcg per day
Even that is huge reduction
More manageable (if necessary) is reducing by 12.5mcg daily
I got the prescription reduction of levo. about 8 weeks ago completely contrary to what was to quote the GP, at a face to face appointment the day before, that we had ‘agreed to disagree’. Fortunately only a reduction of 75 from 100 mcg, and I take privateT3 too…but even so this made my fibromyalgia pain and stiffness much worse, altered my blood glucose levels necessitating a 10% increase in insulins, made me constipated etc etc. After the retest when the TSH had only risen by 0.01 to 0.03 he got the receptionist to tell me the new prescription was for 50 mcg levo., but I have reinstated the 100 mcg, and written a letter explicitly saying why I want a 100 mcg prescription of levo. …have a phone consultation next Wednesday. Not that I have much more to say that was not in the letter, so presumably it will be him ‘talking’ to (at) me! I am now about 2.5 weeks back on the 100 dose, and yesterday had to reduce the insulin by 10% as was getting ‘hypos’, pain/stiffness till there… GPs should listen to his patients with decades of experience of what hypothyroidism does to us and realise a ‘trial 6-8 weeks’ is not that but at least 12-16 weeks ie a whole season to recover, I am hoping in my 70s too that it is that quick! Incidentally when I was in diagnosis stage I had very high TgAb, not TPO, only been retesting those as a Medichecks package say the last decade and never seen my antibodies raised again, so interesting to see your TPO raised. If my Gp refuses to return the 100 levo. dosing I think I will look at private sourcing it, it won’t be expensive as T3!
This is utterly rediculous...and you weren't even consulted as is supposed to happen
This is dosing by TSH which is not a reliable marker....yet those idiots play fast and loose with dosing on that basis
How you feel is the most important criteria.....but try saying that to a TSH obsessed medic who probably has had only scant thyroid education in med school
FT3 is the most important result followed by FT4....again medics don't understand this.
For good health every cell in the body must be flooded with T3 by way of an adequate and constant supply.
Do they understand that T3 does not become active until it reaches the nuclei of the cells and attaches to various T3 receptors....I doubt it!
How can they judge thyroid levels with what is a TSH/pituitary test.
OK, TSH measures the level of hormones in the serum....but there it's value ends. It does not measure the levels of FT4 and FT3 which individually are important as a guide to what may be adequate, or deficient or too high.
Alarm to medics!! TSH is suppressed....most likely the result of fairly high FT4.....they need to investigate further....but they just cut the dose with negative consequences.
Without comparison of FT4 and FT3 ( no T3 taken) we cannot readily judge the status of T4 to T3 conversion.
Do they even understand that we are all different with entirely different needs....it doesn't seem so.
So we are relegated to the level of (say) washing machines rolling of a production line, which all have to be calibrated to a set number/point
I often quote our late advisor diogenes/ Dr John Midgley....
For the moment mechanical thinking has traduced medical diagnosis.
Sorry this possibly isn't helping much to solve your problem but I'm becoming increasingly furious at the level of ignorance in the diagnoses and treatments of thyroid disease and we need to stand against what is basically making us ill
They need to justify reducing a dose and changing a treatment that has worked for decades....quoting TSH is not good enough. I doubt they can!
FT4 is approaching top of range but some need that level to achieve adequate FT3.....possibly your issue.
If they had the nous to also test FT3 they may find it is relatively low because your T4 to T3 conversion is impaired....but still high enough to keep symptoms at bay.
So.... they reduced your T4 and you became ill....you no longer had enough T4 in your system that could be converted to T3....so your FT3 dropped and reduced your body's ability to function.
A 40% reduction in dose is madness and as helvella says, quite simply incompetence, ignorance, and looks to be very uncaring.
If you still feel unwell after 6 weeks on 100mcg and after a test, then insist that they reinstate your original dose because they have no evidence to support a reduction....and they have failed to check your FT3 level
At our age we should not have to fight our corner (I'm 79) but I'm afraid this is 21st century health care.
As an aide memoire make a list of what you want to say /to ask the GP then follow the appointment with a detailed letter to go in your notes.....GP's recollections may vary!
Apologies for the rant but we really have to stand up against this nonsense....oh, and I'm aged 79!!
Thank you so much for message. It’s really appreciated. I will be making an appointment with my dr to discuss it. It’s taking me a long time to start getting well again, and it’s so frustrating that they made a big decision about my medical health without consulting me.
I went through the same sort of thing. I was doing brilliantly on 90 mgs of Armour, and then had labs done which showed a "suppressed TSH", so they dropped me to 75 mgs and I immediately became depressed, lethargic, couldn't give a hoot about the house being dirty. I just didn't have any motivation. I sat on my window seat and stared out the window. I put myself back on the 90's without telling my Endo's NP, and I'm going to go to my GP and explain that I need to be on the 90 mg dose, or somewhere between 75 and 90 in order to function. I'm on Endo #7, and I sure as heck do not feel like looking for another one because they are all cut from the same cloth!
They (doctors) just can’t help themselves from ‘meddling’. I can’t make up my mind whether the utter laziness of those who don’t meddle or the meddlers who delude themselves they are ‘helping’ are the worst.
Although it does not help us to know, does it? Both are disruptive. Just different.
I find it hard to understand how the powers that be can be so closed minded that they fail to recognise the absolute mess that they have landed thyroid patients in.
In all consciousness can they really be satisfied that following, what are basically ( flawed) but established beliefs, will result in better treatment than reliance on scientifically established facts.
Reform needs to start at undergrad level.....well that would put the cat amongst the pigeons in the establishment.
So, reform is blocked!.
Result...continuation of same old problems and mistakes. And suffering!
I gave up and now self medicate....but that's not the answer for everyone....
It’s too inconvenient for them to ‘do’ change. I am quite prepared to believe they are overworked and channelled into all this nonsense about thyroid treatment. Even if they start off interested they become less charmed along the way. I was just watching an item on the news yesterday about sexual harassment of junior doctors and medical students yesterday. Our NHS is such a ‘closed’ place to work, too many doctors and other staff have had complete freedom to run it whatever way they want. Its not a healthy atmosphere.
And if that is happening within their own ranks, what hope for (particularly but presumably not exclusively) female patients? That attitude will not stop at the consulting room door.
I only need to look at the public comments (particularly by so-called eminent endocrinologists) re: patients, to know how utterly cut-off from the rest of life’s realities these people are. Many have lost touch with the world outside their hierarchical world, where their word is king.
It is utter madness. Everything depends on the opinions of the top person and not necessarily based on up to date knowledge.
We don’t seem to have too many choices. We go on battling or we give in. Neither are that attractive from a patient point of view, especially when ill!
Keep going back and try different doctors. Tell them the symptoms have got worse since they dropped the dose. Ask why you weren't consulted? Just persist.
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