Hi to all, I have been taking levo for 2years started in Oct 2019 25mg every other day. March 2020 increased to daily, Oct 2020 increased to 50mg.
Jan 2020, I had issue. with sinusitis also clear mucus cough, given antibiotics this as continued to were I have in total had 13 courses of antibiotics, to date.
Thinking back the sinus & cough etc only started after I had been levo for 2 months, I also noticed joint pain getting worse,
So I have not taken levo for 6 days, presently the sinuses appear better no mucus or cough.
Question, as anyone else had issues like this, also any advice appreciated
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Harlech
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Harlech it is more likely that you were on too low a dose of levothyroxine and they were hypo symptoms. 50mcg is a starter dose. When we start levo the thyroid often reduces it's production. The starter dose is often not enough to make up for the reduced production so we get more symptomatic.Also antibiotics affect the absorption of levo and can make us more hypo.
It is common to feel better when stopping levo.
The other option is an allergy to one of the fillers in the brand of levo. Try a different brand.
Teva & mercury were a mix for a few months, the later months its been accord. My gp will not increase, due to in range. I do wonder whether its allergy related so going to speak with the pharmacist. I would take the levo about 1-2 hrs before getting up & then I would start coughing all mucus stuck in my throat to point I felt I was choking this would carry on though out the day, taut muscle back, legs, were walking is difficult. The last 20 months have been awful. That's why I stopped the levo for now, as I have no alternative at present.Thank you for your reply
Your blood tests from march show that you are undermedicated.Unfortunately GPS do not understand that in range is not the same as optimal. Size 5 is a normal shoe size but would not fit if you were a normal size 7 , it's the same for thyroid hormones.
Dr's phone calls are OK for somethings, I am trying to get a face to face 1, but I have to wait 1 month, then a Dr phones me if they then think its necessary I will then be given an appointment.When they know what I want the appointment for there's good chance I get rejected.
Hi, can I ask if you were relatively fit and pain free before starting Levo? The reason I ask is because I am suffering badly with stiff muscles too, especially in my back thigh and calf muscles. We have just got back from 5 days on the Isle of Coll where there is nothing to do apart from walking and to continue throughout the day, I had to take ibuprofen and paracetamol to dull the pain. It’s there all of the time and I find that sitting exacerbates it. I too suffer with sinus problems but I’ve had it for years, I can’t believe that your GP has given you so many courses of antibiotics!! I try the natural route, of rinse, it doesn’t get rid of it altogether but it certainly relieves the pressure.
Hi. I was fit & able I moved house on my own which included some alterations, did a lot of the decorating myself. At times walked in & out of the town. My first issue started with me feeling cold all the time having to wear layers of clothing , then as time went on joint pain, can't walk that far, anxiety loss of confidence eye issue keratitis etc. In other words it's like being a totally different person.
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
Levothyroxine doesn’t top up failing thyroid, it replaces it, hence why once you start on levothyroxine, almost everyone will need to increase dose upwards
Starting on 25mcg on alternate days was extraordinary
Dairy or lactose intolerance is extremely common with autoimmune thyroid disease
Have you tried dairy free diet
Which brand of levothyroxine are you currently taking
Do you always get same brand
Only Teva and Aristo are lactose free levothyroxine tablets
Hi I am female age 73 9st 2lbs i was a couple yrs ago 8 &1/2 stone. The gp will not listen, tried endo, same answer in range. Lactose intolerance I don't think I am due to dairy doesn't appear to bother me in anyway. I have thought about possible allergy ?. I know covid as made things difficult, I have sent 3 blue horizon blood tests to the gp last 1 was May, they are being ignored as I was requested to go for blood test in Sept. due to it being I hadn't had 1 done for a year. . (My answer was yes I have, I have sent in blood test.)
As I put in my reply to Lalatoot I have stopped levo at present as I was feel unwell due to mucus throat, coughing, taut muscles, joint pain, & coldness.
At the beginning of Sept. I put a post up about high b12 levels got the print out from the surgery its
>2000. (200 - 900)
Your reply appreciated
In my case it was certainly the fact that it was not so much what was in the levothyroxine, how much I took, when I took it, what foods I ate or didn't eat not what vitamins or similar I took......it was the fact that the hormones I did actually need were deliberately not included in Levothyroxine tablets. I believed the doctors for 8 years then started on NDT and will NEVER take Levothyroxine ever again and will NEVER trust any doctor ever again.Not saying this that similar action would improve your health but everybody should be aware that doctors do not always behave in favour of the patient even when they are fully aware of the consequences.
Hi. Have always taken the levo a good hour more like 2hrs away from food or tea /coffee any vit's at around 6pm as I had read about this on the forum. As mentioned I seem to have issues after 2 months, thinking the dosage wasn't enough even with increases I got worse. Its either an allergy or I can't tolerate t4?
If you had an allergy to the fillers in levo, of which the acacia in both Teva and Mercury might have been suspected here, you would have noticed it almost instantly, within days, if not hours. Firstly, you are, and have been, undermedicated, and an increase in dosage is necessary. Secondly, all those courses if antibiotics will have played havoc with your body, your gut biome in particular, causing many problems. If you have ongoing sinus issues, they could have several causes including overuse or incorrect use of antibiotics, sinus deviation and post-nasal drip. Allergies could be another reason, either from food or the environment. I appreciate that referrals and specialist testing have been put on the back-burner since Covid, but I think you should now press your GP to investigate further, as you do not want to repeat the antibiotic route. Vitamins and minerals should be optimal to support your general health, too. I am afraid that a GP does not have to acknowledge or act on any private results, but perhaps they could be encouraged to repeat your NHS testing and prescribe according to NICE guidelines. Just a word of advice about coming off levo: it has a long half-life, some remaining in your system for quite some time, so any instant relief is likely to be a placebo effect. In addition, this hormone replacement is needed throughout your body, and being without it can be harmful, so I would discuss all your concerns with your GP as soon as possible.
Firstly thank you for your replyRef. to antibiotics I don't want anymore, sinus, throat, mucus & coughing started 2 month after I been on levo, at first I thought I just had sinus / possible chest infection. this as now been ongoing problem for 20 months. At this moment I can only think possible the levo, as nothing else as changed.
I do have a phone call appointment at the end of the month with the same gp who prescribed the levo, when I explain things to her, I think she will stop the levo.
I’d go to Medichecks or another good private testing place and order a test of your tsh t3 and t4. I’m certain you’ll find you’re under medicated - you may have numbers in range but your symptoms tell you it’s not enough meds for you. Honestly, it’s easy to think it’s an allergic reaction and it is in a way as your body is reacting - buts it’s your body saying ‘thanks for the levo but could I have a bit more?’
Hi ref. Blue horizon private blood tests I have had a few done this year January, March, & May, copies were sent to surgery & addressed to the gp that prescribed the levo, also letter stating they were to be added to my medical records. I do know that she received them.May results
Have you considered that it may be an allergy that may have just materialised? I have similar issue of having to clear my throat, sometimes it comes on after eating or having an hot or cold drink, something seems to cause a post nasal drip type of illness. I take 150mgms of levo daily. Maybe as someone has said might be caused by levo causing you to react to certain foodstuffs. May be an idea to keep a food diary even if you are not getting it so much now as you may decide to start taking levo again and you can use it to test whether it is a food allergy whatever the cause.
Hi Harlech I have been taking Levo since 2013 and currently on 125mcg. I have been suffering with terrible joint pain at night. I informed my go about 2 years ago and she said I possible had fibromyalgia. I realised that the pain usually started in the middle of the night a couple of hours after taking my levothyroxine at around midnight - 2am. Got so fed up with not sleeping I decided not to take my Levo (I know this is not recommended but I was desperate to find out what was causing it) for three nights as thought this was triggering the muscle pain. Amazingly the pain stopped. Obviously had to restart the medication as have no alternative but pleased to know it’s not fibromyalgia. Just wish I could come off this medication totally. I take Levo without acacia in which does seem to help a little. Definitely worth looking at the fillers within the medication.
Hi. I was just going to start a post. I stopped the levo on the 12th of this month, I wish I had done it many months ago, the muscle tautness is better, I cannot comment about the cough which presently I don't have but unfortunately last Friday I was back on antibiotics again (now 14th in 21 months). Today had a phone call with the gp who prescribed the levo, she is changing the levo from tablet to LIQUID, I am not in receipt of this medication at the moment & know nothing about it.
Some to anyone who as any advice ref. to liquid thyroxine it would be appreciated.
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