Hi, hope someone can help because I'm feeling really lost at the moment.
I started on a 50mcg dose and was on that for about 3/4 months - felt much better but still sluggish/depressed etc. so I went back and my TSH was at 5.8 so GP prescribed a higher dose (no idea what the first result before starting 50mcg was).
I've been taking 75mcg (Teva brand) for about 8 months now and have felt awful. My skin is dry and constantly itchy, I'm still gaining weight, I can barely think straight because of the brain fog and most days I'm horribly depressed. The best way I can describe it is it feels like I've been switched off.
On top of this, I've not had a period in almost 10 months. I had a period about 3 weeks after starting the 50mcg (after about 6 months of not having one), but nothing since then.
I've told all this to my GP, but she's adamant that my TSH is within normal range (it was 2.1 when last tested) so won't up my dose. Instead she's referring me to gynecology - which is going to take about 18 weeks due to covid.
This week I ran out of the 75mcg and couldn't get to the chemist to refill my prescription, but I still had a few 50mcg pills left so I started taking two a day. I only had enough to do a few days, so hasn't done much for the weight gain etc, but for the first time in ages I feel awake and happy! Really dreading tomorrow when I have to start the 75's again.
Just wondered what everyone's experience was with 'negotiating' a higher dose when the TSH is in normal range?
Do you think the brand is making a difference? I felt my symptoms get worse when I moved from the 50mcg to 75mcg last year but put it to the back of my mind. I've read some storied about Teva now, and think it might be a factor.
I'm really worried about my periods. I was hoping to start a family in the next couple of years. If anyone has had their period stop for months or years and is able to share advice (or even just encouragement) I'd really appreciate it.
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AnnieD4
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Can you try and get more blood tests done rather than just TSH?
Your GP will test TSH because that's what she has been told is important and, to be fair, it's a useful initial diagnosis tool -but it doesn't go much further than that. You also need to see what your actual thyroid hormones are doing - so that means testing free T4 and ideally free T3 as well. You want these nice and high in range - at least 2/3 through their respective ranges. Most of us need TSH to be less than 2 once on thyroid meds - so being "in range" is nowhere near good enough once you are taking medication.
If she's amenable, it's also worth testing antibodies - high antibodies will mean that the cause of your hypothyroidism is Hashimoto's - the biggest single cause - and also key nutrients - ferritin, folate, vit D and B12, not least because for us hypos these are often poor and need supplementing. I've had some success with my GP by saying that these are the tests recommended by Thyroid UK.
If she plain refuses, you can get a private test just of TSH , free T4 and free T3 quite cheaply.
Always have an early morning, fasting blood test (when TSH is highest), 24 hours from your previous dose of levo.
Many people find Levothyroxine brands are not interchangeable.
Request new prescription for 50mcg and 100mcg tablets
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, Aristo and Glenmark are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Note Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Has GP tested thyroid antibodies and vitamin D, folate, ferritin and B12
guidelines on dose levothyroxine by weight can be helpful in pushing GP to increase dose levothyroxine
Even if we 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.
I called my doctor today and spoke to a student (who has hypo herself) and explained all of your points. She was in agreement and said we could raise the dose slightly and book a blood test in 6-8 weeks to see what was going on.
She didn't seem to agree that the brand will make a big difference, but she did mention that I can easily get a different brand of 100mcg if I think it'll help.
She then called back after speaking to my actual doctor and said she wouldn't sign off on the new prescription because having the levels too high would be risky for my bone density, and so I should 'keep an eye on things' and book another blood test in March...
I don't know where the sudden worry for my bone density has come from. Personally I'm much more worried about the symptoms I'm actually having.
I have had the vit D, ferritin, folate and B12 tested - all my doctor would say is that the levels were 'normal'. I'm in Scotland so can't see my results online like I've seen a few people on here see.
I've ordered a finger prick test from medichecks, will find out what's going on and then ask for a new doctor.
Thank you again - I've been finding this all so overwhelming and you've really helped lay things out 🙂
You are legally entitled to printed copies of your blood test results and ranges.
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.
In summary, patients on long-term T4 with either an increased serum TSH (>4 mU/liter) or a suppressed TSH (<0.03 mU/liter) have an increased risk of cardiovascular disease, dysrhythmias, and fractures when compared with patients with a TSH within the laboratory reference range. Patients with a low, but not suppressed, TSH (0.04–0.4 mU/liter) had no increased risk of these outcomes in this study.
Was last test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?
Yeah, had it first thing in the morning and delayed my next dose until after the test.
I've been taking Vit D, calcium and magnesium every afternoon (more than 4 hours after levo) for about 4 months. I had my iron, calcium and vit D tested and they were all fine apparently. Are there any other supplements you'd recommend?
So you've been taking 100 instead of 75 and are feeling better..? You need to persuade you doctor to support you to give you sufficient meds to try to manage your symptoms as per NICE guidelines. If they are resistant ask for a referral to an Endo as again I think it's in NICE guidelines that you should be referred if symptoms persist. And in the meantime! get private tests for T3 t4 and tsh so you have a good picture of where you are. You'll then have proof you're not over range anywhere so that might help convince doc. Lol lots to do but its all about experimenting and learning for me.
Lots and lots of learning lol this is beginning to feel like a second job!
I had an absolutely horrible call to the doctor today. I'm gonna speak to a different one and ask for a referral to endo if he can't help either. I've also ordered a private test so we'll see what that says
guidelines on dose levothyroxine by weight can help to get dose increased
Even if we 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 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.
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