Hi, about a year ago while on 150mcg daily I experienced tiredness,joint and muscle pain,headaches,ear pain.My GP dropped my dose to 100mg and up until two weeks ago all was well but suddenly all the above mentioned symptoms have returned with a vengeance along with diarrhoea/constipation, trouble sleeping and just generally feeling unwell.Had bloods done on Tuesday and was surprised when ringing the surgery for results to find that levels were normal.I always take the meds first thing, at least an hour before eating /drinking.Maybe coincidental but am usually given 3 months meds at a time and was about 2 weeks into the final box when I started getting the symptoms.Could there be slight diff in the packs?I don’t always pick my meds up from same pharmacy, could that also be an issue?
Would like to hear from anyone else with similar experience.Any advice would be greatly appreciated.Many thanks in advance.
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What are the blood results that are being described as “normal”? Do you have a copy of them?
My guess is that you have a GP who believes that having results within the laboratory reference range means everything is fine—that’s often not the way it goes.
See if you can get a print off of the results. If in the UK you can ask your doctor’s receptionist to do that for you—or you may have access to your health records through an app?
Many thanks for the reply Jazzw.No I don’t have a copy of my results.I think I will have to start getting print offs though.In my ignorance I just assumed when told that levels were normal that everything was fine and dandy.I did feel at the time though that my drop in dosage from 150 down to 100 was quite a big one.
It's no recommended to add or drop Levo by more than 25mcg at a time. I think you really need to get hold of your bloods. In range doesn't mean optimal.
It was. And yes—please get them. I know we should be able to trust that our doctors will treat us appropriately but so many of them hardly even know the basics about hypothyroidism.
Jazzw is so right, do phone or email your GP & ask for a print out of all your thyroid blood tests (with ranges- as labs can vary).
What GPS say is ‘within range’ may not be ‘optimal’. So many members here would be very poorly indeed if they didn’t monitor their own health and thyroid levels. If your GP won’t test Ft3 and Ft4, I’d suggest looking to do this privately (as many members do).
Strongly recommend getting full Thyroid and vitamin testing done
To drop dose levothyroxine by such a large amount is verging on sadistic
Even 25mcg drop per day is frequently far too sudden
You are legally entitled to printed copies of your blood test results and ranges.
Suggest you get hold of copies of your results when on 150mcg levothyroxine
Just testing TSH is completely inadequate
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
It is vital that you are dosed and monitored on your T3and T4 blood tests results and not a TSH though fully understand that in primary care a TSH might be the only test run with maybe a T4 once in a while :
Once on any form of thyroid hormone replacement the TSH seen in isolation says nothing, especially the longer you are on the medication and especially since you have had RAI thyroid ablation for Graves and/ or do not possess a thyroid !!!
Your HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop that the TSH relies on is broken as your thyroid is not there any longer to complete this loop.
We generally feel at our best when out T4 is in the top quadrant of the range as this should, in theory, convert to good level of T3 and it is T3 that runs the body - not T4 - Levothyroxine.
T4 - Levothyroxine is a pro hormone, a storage hormone and needs to be converted by the body into T3 the active hormone said to be around 4 times more powerful than T4 :
Your ability to convert the T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D - and inflammation and any physiological stress ( emotional or physical ) or dieting, depression and ageing will also negatively effect T4 to T3 conversion.
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.
A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin + a measure of T3 said to be at around 10 mcg + a measure of T4 said to be at around 100 mcg.
Some people can get by with T4 only :
Some people find that they feel better adding back in that little bit of T3 you lost when their thyroid was disabled - making a T3/t4 combo of medications :
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 was used successfully for over 100 years and the original treatment for hypothyroidism, and derived from pig thyroids, dried and ground down into tablets referred to as grains and which contains all the same known hormones as that of the human thyroid gland.
Graves Disease is an auto immune disease and as such for life, there is no cure.
All that has happened is that you have been flipped from hyperthyroid to hypothyroid which is said to be better treated in primary care.
I deeply egret having had RAI thyroid ablation for my Graves back in 2005 and believe this toxic substance should be removed as a treatment option for Graves Disease - details on my profile page - if interested.
When I was beginning to investigate my problems back in 2017 I learned something that surprised me and that was all the Levo meds were made by one of 2 manufacturers in China no matter what the brand name was. Just what I learned.
In the EU, USA and UK, the documentation (Patient Information Leaflets or equivalent) have to list the manufacturer(s).
We can see numerous locations - Brighton, Barnstaple, Wrecsam, Croatia, Germany, Spain, Italy, India, Russia, Belarus, Poland, Netherlands, Brazil, Canada, Switzerland, Greece, France, Turkey, Sweden, Japan, Bulgaria, Pakistan, Bangladesh, Philippines, Mexico, Finland, Ukraine, USA, Puerto Rico, Austria, and others.
By far the majority of those products have different formulations, different dosages, different physical tablets (size, shape, colour, markings), packaging, etc.
The idea that two manufacturers in China manufacture all these variations appears extremely unlikely to me. To the extent I think we can dismiss the idea of finished tablets being made only in China.
What we cannot readily identify is where the ingredients come from. Whether Active Pharmaceutical Ingredients or excipients.
However, I can find a list of companies that are claimed to be suppliers of Levothyroxine sodium API. How complete, how accurate, I cannot tell.
I respectfully disagree. The head quarters of the manufacturing company and where product is actually made are very often not the same location. Pharmacompass is located in New Delhi, India, the headquarters that is , but where product are made may not be the same. Like here in the U.S.A. we have soda brands and manufacturers who own them, but are bottled elsewhere by a bottler. Here in NE it is Polar who is a major bottler of too numerous to mention brands . Manufacturers contract out production of said product.
I suggest you complain to the MHRA and the FDA that all manufacturers' PILs are inaccurate and need to be corrected.
Pharmacompass is not a good source (and I acknowledged that) but there are few accessible sources for suppliers of APIs. It does identify API companies in several countries which at least to some extent tie up with what we know/are told. I did not point them out as suppliers - just a company that maintains lists.
The difference between the distributor/licence holder and manufacturer is taken into account. For example, in the UK, Advanz Pharma levothyroxine products are manufactured by a contract manufacturer called Custom Pharmaceuticals, in Brighton. We know they are a real company, with real factories. Wockhardt in the UK manufacture at their own plant in Wrecsam. There is no doubt whatsoever that it exists and is a real company.
I have listed by manufacturer location - not brand owner/distributor/licence holder.
I have found some more information and found UK-specific Levothyroxine sodium API manufacturing companies:
UK API 42785 ACTIVE PHARMA SUPPLIES LIMITED
ACTIVE PHARMA SUPPLIES LIMITED, UNIT 2, FORWARD INDUSTRIAL ESTATE, TALBOT ROAD, LEYLAND, PR25 2ZJ, UNITED KINGDOM
03/05/2022
UK API 24 COURTIN & WARNER LIMITED
COURTIN & WARNER LIMITED, UNIT F, MALLING BROOKS, BROOKS ROAD, LEWES, BN7 2QG, UNITED KINGDOM
08/04/2022
It would be interesting to know where it is said that there are only two manufacturers in the world?
Strength and Sympathy for you. If you felt better when you where dosing with 150 mcg T4. Except that you had experienced a few symptoms but otherwise your symptoms where resolved.I would try splitting the 150 mcg T4 weighing the larger portions in the AM either dosing in the afternoon with the remainder T4 or just before going to sleep.Your Dr lowering your dose from 150 mcg to 100 mcg dropping your dose by 50 mcg shows me that he does not know /understand how to dose thyroid patients. If he felt that you needed lowering your dose then the next step should have been lowering your dose to 137 mcg after six weeks if that was still not working then the next lower dose should have been 125 mcg T4 . If that dose after six weeks proved to still be high then going to 112 mcg T4 should have been tried. Lowering your dose from 150 mcg to 100 mcg was very irresponsible of your Dr. This Dr just set you up for thyroid dose failure. Which you now know yourself.
Go to your GP with your symptoms. How does GP propose to resolve them? That’s the GPs job. GP may prefer a higher dose for you than having to resolve all those symptoms another way. But stand firm - don’t accept a diagnosis of depression, or a prescription for anti- depressants. In future I’d suggest you never allow an adjustment of 50mcg. 25mcg is a big enough change. Think fine tuning a musical instrument, not topping a car engine up with oil 🙄
I don't know about ur results but graves patient post rai need much higher dose to feel good , usually just above the upper range of t4 , other than that no solution or pure T3
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