I posted in April about a decrease in medication and most who replied thought I shouldn’t have had a decrease because my blood tests where in range. I was taking at that time of blood test 150/125mg alternative days, I was asked to stop the 50mg and take 125mg daily and retest in 8-12 weeks, just a reminder my blood results in April 2021 :
Target for T4 treatment is usually TSH within reference range
!Serum TSH level 0 . 07 miu / L ( 0.34- 5.44
I was told by my GP on the 22/7/21 to reduce my meds further as they say am over medicated, which I have but last week, I was soooo tired,I was falling asleep in the day, I went to my friends for tea and as she talking to me I could feel my eyes closing so I ended cutting the visit short and I’ve just not got any energy, the tiredness is affecting my mental state, I get confused, I use to be organised and now I can’t seem to be organised with anything, my body aches and I’ve started getting a feeling of a tight band around my chest. I’ve made an app with GP for Wednesday morning, I know they will only tell me to get more tests done and they will probably be in range.
I think I need to be referred back to my endocrinologist but don’t know how that works today with this pandemic. I know I can’t carry on being this tired.
Chris
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Do you always get same brand levothyroxine at each prescription
ALWAYS test thyroid levels as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Is this how you did your test
Are you still taking prednisone?
Prednisone lowers TSH
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
What vitamin supplements are you currently taking
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
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 all relevant vitamins
The first test I had I did eat and drink because it was an afternoon blood test, the last blood test I had, I had nothing before the test.
Unfortunately I don’t always have the same brand as the chemist say they only get what the manufacturer gives them, even tho I have Mercury Pharma on my prescription, I rang round other local chemist and they too did not have that brand in stock so I am on Teva which makes me sweat but no one seems to care if the brand doesn’t suit you or not. It’s almost like you have to put up and shut up or they disbelieve that you have problems with certain brands.
I take vitamin b12 and Vit D.
Looks like I will have to do private test as I know my GP will refuse to do any of the tests you recommended.
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.
I rang round other local chemist and they too did not have that brand in stock so I am on Teva which makes me sweat but no one seems to care if the brand doesn’t suit you or not
Small independent pharmacies are often more helpful
Oh my, it’s a minefield when they change the name, I mean I getvacswollen throat on Activas and yet I could be given Accord or Northstar and wouldn’t know that I would be very unwell 😱😱
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Hi , The MHRA recently said that patients should remain , where possible on the same brand of levothyroxine especially if that brand suits them. If this is not possible the should be retested after being on a change of brand after 8 weeks, if you tell the doctor that you will need repeat tests after 8 weeks they may specify the brand you need at each prescription . See the link below.
My GP has put it on the prescription for mercury Pharma but when I went the chemist (next to GP surgery) they said they only had Teva and that they only get given what their suppliers bring in. I did phone around local chemist but not had it in stock and because I needed them the next day I had no choice and just knew I would have a bad 3 months 🤦♀️
Easy to say after the event, but you could have asked the pharmacy if they would give you an emergency supply of a few tablets of whatever they had - rather than the entire three-month supply. That might have opened up a window to find what you wanted.
That's awful. I think some of the pharmacies are too idle to source different brands of levo, as SlowDragon says the smaller pharmacies are often better than the big chains, my pharmacy go out of their way to get me Mercury Pharma every time.My mum recently had a very bad reaction to Teva, in the end we changed her dispensing pharmacy because they delivered the wrong medication on 3 occasions and were most unapologetic, they even said that she'd be better off taking the teva than taking nothing, that was the final straw because they obviously had no regard to an anaphyltic reaction. Good luck getting sorted out.
You are ONLY over-medicated when free T3 goes over-range - and to know if that is the case, they're going to have to test it ... I'd go back to the GP and say that you are uncomfortable that you are now showing serious signs of being under-medicated and you don't want to endanger your health* so you NEED your previous level of levo restoring please. But if s/he's not comfortable doing that, you are very happy for them to test your free T3 which will show (a) if you're actually over-medicated and (b) a good enough converter
* I suspect you aren't actually endangering your health, but (a) they won't know either and (b) you're not feeling good enough - which is reason enough to make a fuss. I only got free T3 tested (and then lio prescribed) when I started using emotive language like this when I was in the same position, which clearly got them a bit worried - and refusing to lower my dose of levo once I'd started feeling unwell, despite being told I was over-medicated too. Since I finally had free T3 tested and got the lio I've been feeling great - so it IS worth making a bit of a fuss
Thanks Fushia-pinkI am deffo going to take that stance with my GP, I am fed up with them not listening to me, I don’t feel like am functioning at all, I have at least in the last week, forgotten a couple arrangements I’ve made, which has been embarrassing and they have all been in days of one another.
If he is not willing, I am going to ask to be referred back to my Endo, she was brilliant and thought outside the box, not like my GP who is scared to do that.
When i go to pick up my levothyroix if its not the brand i won't i refuse the presciption because once you have left the pharmacy they won't change it. Just a little tip. Do you know which brand that suits you? I can not take teva at all.
Best thing is always check before you even leave the counter.
I take the bag, and immediately open it while they are still there - saying something like "I always check ", and smiling.
If there is an issue, it can be resolved without having to put the medicines in the bin. If you walk away, even within the shop, they should not re-issue any medicine.
I do this too. Open the bag immediately and check it's not Teva, which was dreadful for me. I raised a yellow card on it because it gave me terrible nose bleeds. One for over 1hr that left me and the bathroom looking like I'd butchered something in there. GP didn't believe me, but pharmacist did and put it on their system for me.
I use a tiny pharmacy in a village. They go above and beyond to get what I need. Great service. It's part of a group called Knights Pharmacies.
Better still, get the pharmacist to open the bag and check before it leaves the counter and is handed to you. Then it has not officially been dispensed and collected.
I have just read that you had a total thyroidectomy so it's very likely you will need to take some T3 - synthetic Liothyronine alongside your T4 and that can currently only be prescribed by an endocrinologist.
A fully functioning working thyroid would be supporting you on a daily basis with T1. T2 and calcitonin plus a measure of T3 said to be at around 10mcg plus a measure of T4 said to be at around 100 mcg.
T4 is a storage hormone and needs to be converted by your body into T3 the active hormone that the body runs on : T3 is said to be around 4 times more powerful than T4 with the average person needing to utilise around 50 T3 daily just to function.
By not replacing your own T3 thyroid hormone you have in effect been down regulated by some 20% of your overall well being and overtime this will pull you down even further.
The thyroid is a major gland responsible for full body synchronisation including your mental, physical, psychological, emotional and spiritual wellbeing, your inner central heating system and your metabolism.
I seriously do not understand why when the thyroid produces and supports you daily with 5 known hormones it is seen acceptable to prescribe just 1 , and that one, an inert hormone that needs your body in tip top condition to be able to utilise well.
I found as soon as I introduced a little T3 it was as though my pilot light has been switched back to " on " and my brain and cognitive functions were the first noticeable areas of improvement in my thyroid health journey.
Some people can get by on T4 only, some people find T4 seems to stop working as well, at some point in time, some people need a little T3 alongside their T4, some people need to take T3 only and some people prefer to take Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland.
No thyroid hormone replacement work well until ferritin, folate, B12 and vitamin D are at optimal levels and you may need to supplement these yourself as you will likely be in the range, but not for someone who is hypothyroid and needing to convert the thyroid hormone replacement medication.
T3 is currently a bit of a post code lottery due to CCG's restricting it being prescribed due to inflated, unnecessary costs that the NHS has been charged.
There a bit of a stand off - but your health is at stake in all this stupidity and suggest you get the Thyroid UK list of friendly endos, both NHS and private, and be referred to someone who has the knowledge, and professional integrity to treat you with the respect and care you deserve.
I am with Graves post RAI thyroid ablation and now manage lingering Graves, thyroid eye disease and hypothyroidism. i was unable to be prescribed anything other than T4 through the NHS and so now I self medicate. I tried a T3/T4 combo and that worked and then I tried NDT and that was much easier to work and suited me better and I think more sensible as I'm replacing like with like.
Having just skipped through your previous posts, I see that you have had experience of taking both T3 and NDT and am now unsure why they haven't worked for you and am questioning how your trials of these treatment options were advised and monitored.
I was having a lot of palpitations and sweating while taking NDT and did not persevere with it till I got it right. As for T3 I only had it for a month from my Endo and my GP would not prescribe it, plus at the time of taking T3 I became unwell and in a lot of pain and I thought it was a reaction to taking T3 but I had nothing to do with that, I was diagnosed with Polymialgia and my Endo had discharged me. I wouldn’t know how to source T3 and how I would go about taking it without seeing my Endo again.
Can your Doctor write a DAW(dispense as written) on the script? If he/she does then the pharmacist must give you exactly what your doctor prescribed and nothing else.
Spoke with GP and they are going to send me for bloods, I have asked to test T3 she just went onto say that the TSH is a good guide, so I think I will only be getting the basic test AGAIN grrrrr!!! Got to pick up blood form tmrw.Thank you to everyone who responded to my post 🙏🏻
i have just written a reply to someone else on here... healthunlocked.com/thyroidu... take a look and read the links in it... it applies to you too. re consequences of GP lowering dose again.
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