My gp has said I'm over medicated now and wants to drop me from 150g of levothyroxine daily to 100g _150g alternative days my question is I went up in 25g alternative. so how comes I have to drop in 50g my last bloods are as follows
TSH
May 0.73
July 0.37
Aug 0.14 (0.35-3.5)
Ft3
May 5.4
Aug 5.1 (3.8-6.0)
T4
May 14.9
July 12.5 (7.5-21.1)
For some reason they didn't do Aug test.. Annoyed much..
Now in Nov last year
Vit D 106 (50.0-120.0)
Folate 358 (187-883.0)
Antibody 0.1 (. 00-1.0) I have requested these test more this year but always a fight to get them added..
Please if someone can tell me I can drop this medication like this as I scared to get into the position I was when my hypo started.. Doctor is requesting another test in 2 weeks to see how I fair on changing meds today
Thank you all
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chubi52
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It works fine for me (and this isn't the computer it was created on).
I suspect you could have something wrong with your configuration. For example, your computer/tablet/phone is trying to open a PDF using an app that can't open a PDF.
After reading many posts on this forum and the replies from the staff I think the amount of information that is proffered and the level of understanding that people need to decipher it is beyond most, especially as it is often mentioned that GP’s do not know enough about it.
I apologise, I was making a general comment on the amount of people self medicating and taking supplements given that the body I’d finely tuned and anything lacking or in excess can cause symptoms that can be misdiagnosed and lead to other treatments.
I looked at your first link and found it very useful but could not access your second on my device.
Remember it is meant as a quick look up - I know it is big but don't feel you are expected to read anything other than the little bit that is relevant.
First of all, it's important to know how much you're actually taking. Levothyroxine comes in micrograms (mcg) not grams (g), there are 1,000,000 micrograms in a gram so there's no way you'd be taking grams 😊
Reducing your Levo from 150mcg daily to alternating 100 and 150mcg means that you take an average of 125mcg daily, so it's a reduction of 25mcg not 50mcg.
Is the August test your latest one? If so why is he reducing your dose now? He should do current tests to base any dose change on, not go by old tests.
Your vitamin results are too old comment on, they should be tested annually.
Thank you for your reply, much appreciated. I did go up slowly 100mcg alternate 125mcg.. So was confused why I would not drop to 125mcg alternate 150mcg I really can't get my head around all this my brain is too fuzzy.. 😔
My GP has done exactly the same for no valid reason, I am within range with no bad symptoms.....I really do feel that gPs have been told to get people on lower Levothyroxine....only a hunch at the moment.
You are ONLY over-medicated when free T3 is over-range. Your GP can't possibly know if it is or not unless s/he tests it. And should test free T4 as well. Just testing TSH does not give you any info at all about your actual thyroid hormone levels
I wouldn't accept a reduction in meds until thyroid hormones are tested and shown to be over-range x
Thank you.. This is. Just one big balls up by the surgery.. First they told me bloods test were delayed by over a week for results, then I called on week 2 to be told they have gone somewhere else, then I call them up and request they send to my doctors.. 2 more weeks go by and still no results, so I phone Dr's and told they havnt got them yet.. ( you couldn't make this crao up) so more calls finally my surgery gets them via email and have been sent to my Dr's box who only comes in on Monday and Tuesday.. So that week I get a call to make an appointment for the results and discussion. Over 2 weeks wait for that.. Finally 18th Oct I get a call and an apology for my August bloods taken so long... Angry is an understatement..
For example my surgery uses an app called 'patient access' this allows you to register and then you can usually get to see your patient records and test results online, though the surgery decides how much you can see!
There are a number of different services that they can use, it just depends on the surgery and I think not all surgeries use them but it would be worthwhile asking.
It's been a revelation for me as I can get test results much quicker and so don't have to ask the reception for them.
I’ve been keeping a close eye on mine and keep meticulous records requesting lab printouts of results. Patient access records are incomplete and some stuff has disappeared or never been properly included in the first place.
My only interest in seeing my records through patient access is to see if my records are more doctored than I am! 🤣
Yes I can imagine (and know personally) that patient access is not without its issues and limitations.
I just know in the past when I've had blood tests done the reception used to tell me to ring back in a week but now (for me anyway) some results are often available the same day.
But yes they did recently restrict my access to my historical thyroid blood results but before then it was really useful. ☺
Thank you.. Yes I am online with my doctors.. Its just these Aug results went missing and it took me over 9 weeks to locate and get a doctor to call me as she only got them via email..This is the first time my results went awol.. I don't expect it to happen again as I logged a complaint..
But there again, I saw the Dispatches last night on the NHS (watch it on catch-up if you haven't seen it) and it makes you realise that we're pretty lucky dealing with mere utter incompetence, rather than the horrors of criminally inept botched surgery the two people featured now have to live with x
Refuse to reduce dose levothyroxine until you have had full thyroid and vitamin testing
Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Do you always get same brand levothyroxine at each prescription
Exactly what vitamin supplements are you currently taking
Remember to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS
Only do private testing early Monday or Tuesday morning and then post back via tracked postal service
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Low vitamin levels common as we get older too
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 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
Once again thanks for replyMy eyes don't feel right have to keep wiping them.. My legs are still stiff even if I've rested for hours, nails break roots of hair sensitive, no hair growing under arms, ringing in my ears brain don't connect, but will add this is nothing to compared when I was first diagnosed.. Its been so long since I felt normal I've begun to think this is normal.
If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B is a recommended option that contains folate, but is large capsule. You can tip powder out if can’t swallow capsule
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
I have the weepy eyes too. Ugh it’s awful. I can blink the wetness away all day!!! The only time my eyes have ever been clear and dry is when I was on 15+mcg T3.
Lucky you! Getting your GP surgery to do regular thyroid bloods for you. I have to push for once every 12 months! GP'S panic if your TSH goes well under 1. And I am jealous of your FT3 mine was only 3.6 when last had my bloods done (private) with Medichecks. My GP wanted to reduce me down from 125mcg. My antibodies are up in the 100's too! Not that he'd know that, they're not interested in anything but TSH and old fashioned reference ranges. So I didnt get in touch, and guess what? My last prescription for 125mcg went through no problem!Have you considered some of your symptoms may be menopause related? And maybe low iron? Brittle fingernails for example. I've been through double whammy of hypo & menopause. Find magnesium supplement brilliant for a) good nights sleep and b) aching joints. Good luck!
Thank you for replyI do believe it might be menopause as I got hypo and the same time (operation to remove my ovaries) in June 2019 then after months of feeling crap was told hypo in Jan 2020.. Its such a fine balance just to feel normal. Yes I started magnesium in June this year and I do take b complex.. Once again thank you for your reply, I hope you have good health
There seems to be something going on with GPs and thyroid medication in the south east of England. I had mine increased from 100mcg to 125mcg at the start of the year, but my brother had his decreased from 150mcg to 75mcg and feels really unwell because of it. That seems such a huge drop in one go. He has absolutely no energy and is even looking around to see if he can buy some 25mcg to soften the drop. I think they must have been told to reassess all their Thyroid patients. He is already dealing with a great deal having a leaking aortic aneurysm following a failed repair, which is making him incredibly tired. He's getting no joy from the surgery. He's such a nice guy and I hate seeing him so low physically.
That is what I think, too many people suddenly having levy dose dropped for no good reason. All of a sudden, they want TSH tests done, when they just barely bothered before, even when I was unwell with thyroid symptoms. Had to negotiate with mine to soften the dose lowering. Last time they did it they read the results wrongly and dropped when they should have upped. I needed up in hospital. Really, they have not learnt their lesson from last time...repeat performance
I'm in the South East too and I was dropped from 100mcg to 75mcg with no follow-up bloods. My private blood test tells me that my TSH is now 5.67 and I'm not able to speak to anyone till next Monday about it (two weeks after my test) and it's the pharmacist, so I doubt they can actually do anything.
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
I already know my ferritin is really low as I had a Thriva test last week and it’s 10ug/L, but I know the reasons for it and it should start to come back up. My VitD is also on the low side of normal at 55nmol, so work to do there. I get a different brand of Levo every time I go to the chemist but at the moment it’s Teva. Apologies, I have Covid at the moment, so no energy to type.
" Doctor is requesting another test in 2 weeks to see how I fair on changing meds today" Retesting thyroid bloods after just 2 weeks on a reduced dose is rather pointless , it's too soon fro the TSH to have responded to the lower dose, (and barely long enough for the fT4 to show the new level)
It's also too soon to know how you'll actually end up feeling on the lower dose .
To allow TSH time to change in response to lower dose you need about 6 weeks on new dose .
To know how you'll feel, you need at least 6 weeks and probably more like 8-12 weeks.
I'm not sure you needed a reduction, but it might be worth trying a very small one .. i did recently find my calf muscles get very tight and stiff when i increased my dose by 12.5mcg and dropping by 12.5mcg again fixed it quite quickly.
but i agree with you .. 125/150 (137.5mcg) alternate might be a better idea than 100/150 (125mcg) .... your TSH isn't that low at 0.14 ,although it did look to be falling gradually over that last few months which could be a clue that the 150mcg dose was a smidge too high for you .
A few years ago my then GP said that older people ( I was about 68 then) didn't need as much thyroxine!???? I had been on 125mcgs for at least 15 years & I felt well. I have taken thyroxine since I was about 40 & at one time I was on 200mcgs a day. An endocrinologist told me they didn't go on levels but on the individual person. At that time they said that I had had a pituitary tumour which was now scar tissue, thyroxine was gradually reduced later as it caused a toxic effect on my liver, I was taking 150mcgs after that. This was reduced to 125mcgs about 15 years ago. Then my then GP wanted to reduce it to 100mcgs a day. I began to have more muscle stiffness in my legs and was very sluggish & tired. I changed my GP who put me on 125mcgs every other day and I saw an endocrinologist who checked all my levels. I am still on this dose but I am now feeling very old (I'm 74 now) I have gained weight because I don't go walking any more ( I also have arthritis in both knees).
I found it very interesting reading that some people who were hypothyroid suffered from a constant chronic cough, allergies, wheezing, sinus trouble and postnasal drip - that describes me too, all since my dose was reduced. I'm seriously thinking of getting a private appointment with a good endocrinologist (Cheshire area) if anyone can recommend someone. I recently had to ask GP for a thyroid blood test, I hadn't had one for 2 years, obviously missed through lockdown. I don't know any of my levels , I haven't heard anything about my latest blood tests. Any ideas please?
Unfortunately at 74, (I am a couple of years behind you) you are written off, everything is down to being old, and you are invisible to the NHS (and bus queues etc!). At our age, we were taught to be polite, not push, never make a fuss. That does not work any more, you have to push, make a fuss, wear purple, and demand people see you.
I suspect you are underdosed. Phone and ask for the results. They are your results, and they have to, by law, give them to you. Then post them here and we can help further.
When I phone for mine, I get "oh, you are that one!" and I agree that I am that one. You can almost hear the receptionist go red!
First step is to get FULL thyroid and vitamin testing done privately
Especially as with pituitary issues TSH is irrelevant
Do you always get same brand levothyroxine at each prescription
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Low vitamin levels common as we get older too
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 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
My doctor reduced my thyroxine.. Said it was a trial... Almost 3years ago.. I have been fighting for it to be put back up ever since.. I started losing hair again, putting weight on and unable to lose it.. Struggling with joint aches and fatigue.. Very depressed.. I have written and pleaded. Pointed out it was supposed to be a trial, and as it did not suit me, to be put back as it was.
I am still fighting..
Just be very cautious and sure that you agree with your doctor andbuf they suggest a trial period.. Get it in writing.. I wish that I had.
Get FULL Thyroid And vitamin testing done ….privately if necessary
Come back with new post once you get results
Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Low vitamin levels extremely common when under medicated
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12
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 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 TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue too
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