My first post here - and am new to this (finding a bit overwhelming, desperate and lonely in this - also hope this is not too rambling).
I was diagnosed as being hypothyroid some years ago. Most recently I was feeling fine with a low level of Levo (25 mg) and and allergy research natural glandular allergyresearchgroup.com/th... and supported by a doctor at my GP practise who also had qualification in functional medicine. She had also done a fuller blood test and said that my F3 levels were low at the time - so F4 to F3 conversion was an issue ( Spring 2019). This improved with the medication she recommended. Unfortunately she left the practise.
The beginning of 2021 I was running and practising yoga regularly and felt great. Another GP at the surgery phoned me in January 2021 in a panic (and panicked me) to tell me my TSH levels were off the scale. Told me to come off natural glandular and increase Levo to 100 mg. Since then (and after TSH levels only being measured) GPs and NHS endo have advised steady rises of Levo (as TSH still too high) and since mid July am on 150 mg per day. I have been feeling terrible for sometime since change in medication and now feel considerably worse. Feel I have been over prescribed Levo (exhausted/tired all the time, break out in sweats, diarrhoea). Through information on here - I have now asked for TSH, F4 and F3 blood test - waiting for results. Am thinking in meantime to reduce Levo to 100 mg as I feel so bad. Wondered what your thoughts might be on this and above. (Don't have current levels of TSH - but will be asking for print out of all past blood tests)
Once results have come through I am going to ask for private endo referral. I am just about to move surgeries (moved out of London) - and looking for referral in Berkshire (have seen endo on Thyroid UK list who has prescribed T3) - but any other recommendations welcome. But am also looking for knowledgeable and sympathetic GP in Windsor/Maidenhead Berkshire area so might help with my choice of surgery if possible. If anyone can pm me about this and anyone who has had an appointment with Berkshire endo on Thyroid UK list or has another recommendation.
Thank you
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pebblesh
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This is a bit strange, because on 25 mcg levo, you can't have had much T4 to convert (it's FT4 and FT3 - Free T4 and Free T3 - by the way). But difficult to make any meaningful comments without blood test results.
This improved with the medication she recommended.
You're talking about the natural glandular, here? Or the levo? Or did she give you something else?
Another GP at the surgery phoned me in January 2021 in a panic (and panicked me) to tell me my TSH levels were off the scale.
Off the scale high or off the scale low?
Told me to come off natural glandular and increase Levo to 100 mg.
From 25 to 100 in one go? That was wrong!
Since then (and after TSH levels only being measured) GPs and NHS endo have advised steady rises of Levo (as TSH still too high) and since mid July am on 150 mg per day. I have been feeling terrible for sometime since change in medication and now feel considerably worse.
Just because doctors advise something, doesn't mean you have to do it. Seems to me that you've had time to constat that this treatment isn't working for you. So, why haven't you tried reducing your levo again - slowly, this time - and reinstating the glandular? You don't need doctors' permission to do that. It's your body, your health and your life.
But, this is a classic example of why dosing by the TSH is wrong. There are too many variables, and the feed-back loop is compromised once you start taking thyroid hormone replacement (levo). I look forward to seeing your latest blood test results - results AND ranges - for a better idea of what is going on.
Thank you for your reply so quickly (makes me feel better to know that there is support out there). I realise now need to have all my old blood tests so going to get those - and then re-post. It is amazing to think about how I see now uninformed I have been in all this - but rushed GP phone calls we are now having also do not help!
Felt better with reduction in Levo and with use of natural glandular.
TSH was off the scale too high.
I am going to try reducing to 100 mg at this point but nervous to introduce other things without advice - hence wanting to get sympathetic and knowledgeable endo/gp advice. But I think this is the direction I would be going in.
But you won't get knowledgeable endo/GP advice because neither of them know enough about it. The majority of doctors know next to nothing about the thyroid because they just don't spend the time learning about it in med school. This is born out by the fact that they found it advisable to tell you to stop the glandular. If it was helping you, there was no reason to stop it, but I don't suppose they knew what it was. And, as you know it helped you, why are you reluctant to take it again.
There could be other reasons for your TSH being high. But, as they didn't test the actual thyroid hormones, they wouldn't have a clue!
Yes I can see that they do not know much....so I am trying to educate myself. I am fine to go back on something that will help me - but wanted to do that with knowledgable endo/gp if possible so that amounts are correct/balanced. Also the natural glandular does not seem to be available at the moment - so I would need to use something else in any event.
Ah, I see. That complicates things. But, even the most knowledgeable doctor wouldn't know the correct balance off the top of his head. That has to be found by trial and error.
Great advice as always greygoose. The patient is the judge and jury how thyroid meds are working for them not the labs . I love the scenerio with shoe sizing the other day a member of the forum made. So True.
There is a problem with using thyroid glandulars. Since they aren't prescribed and can just be bought over the counter or online they can't or don't or aren't allowed to declare a hormone content. (To be honest, I'm not sure which.)
Some glandulars have no hormone at all. Some do but the amount is unknown. Some people do well on glandulars some do very, very badly.
Your doctor was a fool to suggest you take a glandular. Instead you should have had your Levo increased by 25mcg, then wait 6 - 8 weeks to test your thyroid, then added another 25mcg, wait another 6 - 8 weeks for another test, and keep on doing this - add 25mcg, wait, then test - until your levels are where you feel well and your results look reasonable.
The other problem is that your starting dose of 25mcg was absurd too. Doctors can start adults on a 50mcg dose, or can base dose on weight as long as the patient is not suffering from heart problems or is not elderly. In those cases the starting dose would be 25mcg but it is not intended to stay there - it can and should be raised even with heart disease or with being elderly.
You definitely need to see all your blood tests results and reference ranges to try and find out what your doctor was doing with all these dose changes and on what basis.
Please note that Levo is made by several manufacturers. Some people do well on brand A and B but do badly on brand C, and it is up to us to keep records of the brands we are using until such time as we find one we do well on.
It is common for people to do badly on Teva, although for some people who are lactose intolerant they are wonderful.
Nothing about thyroid hormone treatment should be rushed. It takes time for the body to adapt to changes. But allowing a suitable gap between dose changes and not increasing dose in too big a jump people's bodies do adapt and can start to feel better.
Please note that for Levo (which is synthetic T4) to "work" it must be converted in the body to T3. If your conversion is poor and your T3 is low then you will feel terrible. One factor in getting the best conversion is having optimal levels of some of the nutrients involved in thyroid physiology. Ask your doctor to test your vitamin B12, folate, vitamin D and ferritin, then get the results and post them on here and ask for feedback. If improving nutrients doesn't help then you most likely need to have some T3 added to your Levo dose.
Thank you also for the information. I don't believe I am lactose intolerant - so I might ask for one of the brands that is not Teva or similar. I will get the vitamin tests done as you suggest and post. My feeling from previous advice is that my conversion to T3 is poor - but I will have to wait until my blood tests to come in next week to know better. I am feeling so awful at the moment that I was hoping to be able to make changes that would start to make me feel better now. At the moment I do not know if I would be able to go back to work in September after my summer break - and that would be very problematic for me.
First step is to get full thyroid and vitamin testing done after minimum 6-8 weeks on constant unchanging dose and brand of levothyroxine
Do you always get same brand levothyroxine at each prescription
If you were over medicated, you would only reduce dose very slowly, usually only by maximum of 25mcg, often smaller reduction
Many people find different brands of levothyroxine are not interchangeable, so it could be brand upsetting you.
Which brand of levothyroxine are you currently taking?
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 at least annually
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
What vitamin supplements are you currently taking, if any
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
I will get the full thyroid test done and vitamins after I have had NHS test results (I doubt if they would do that also at this stage - so will go for private one).
I have been on a mixture of Teva, Northstar and accord (majority of my prescription seems to be Teva). Is there one that is more recommended or is it individual? And how do I make sure that I only have one particular brand. Is that with the GP or pharmacy?
I am currently on no supplements/vitamins as GP told me to come off everything else apart from Levo. With the first GP I spoke about - I was taking Selenium, Vitamin D3 2000 IU 500mg (1x per week), Magnesium and Zinc. When I asked NHS endo about Selenium - he said I was better off eating Brazil nuts.
Many people find Levothyroxine brands are not interchangeable.
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
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
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
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Lastly……Brazil nuts only contain selenium if grown on selenium rich soil…..will usually say on packet
Thank you so much for the information. I will look at carefully and digest all the advice. I may need to think about taking Levothyroxine at night time - as I get up very early anyway for work - it would be difficult to take it I hour before having breakfast. I will also look into which brand is best - I guess this might be trial and error. Not sure at the moment. But really useful to have the information so I can have it to discuss with medical advice.
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).
Thank you. Sounds like really good advice. I have to try to be patient in the meantime and I can see that my hypothyroidism journey may be a much slower one than I had hoped. But I guess it is the getting there that is the most important and learning on the way. It does seem a minefield though - and the fact that it is difficult to get good advice/support from a doctor certainly does not help.
If you were to look at levothyroxine dosing by weight, the recommendation - and it’s only that, we’re all different - is 1.6 x body weight in kg. So, I weigh 57kg which is 91 mcg levo… and was on 100 mcg. As a fellow poor converter, they should probably have tried me on more, but there we go! Just thought it could help you to get a feel whilst you wait for your test results.
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"
The dose of levothyroxine (LT4) should be individualized on the basis of clinical response and thyroid function test (TFT) results. Treatment must be monitored regularly to determine an adequate dose and to avoid both under- and over-treatment.
The NICE clinical guideline recommends:
Consider starting LT4 at a dosage of 1.6 micrograms per kilogram of bodyweight per day (rounded to the nearest 25 micrograms) for adults under 65 years of age with primary hypothyroidism and no history of cardiovascular disease.
Consider starting LT4 at a dosage of 25–50 micrograms per day with titration for adults aged 65 years and over, and adults with a history of cardiovascular disease.
The British National Formulary (BNF) recommends:
For adults aged 18–49 years — initially 50–100 micrograms once daily; adjusted in steps of 25–50 micrograms every 3–4 weeks, adjusted according to response; maintenance 100–200 micrograms once daily.
For adults aged 50 years and over, with cardiovascular disease, or severe hypothyroidism — initially 25 micrograms once daily; adjusted in steps of 25 micrograms every 4 weeks, adjusted according to response; maintenance 50–200 micrograms once daily.
One of the things the doc should have considered, is the "full replacement dose" of levo, estimated to be 1.5-1.7mcg/kg body weight. Since you are active, I assume you are not overweight, in which case 150mcg is an overdose. Overdosing levo doesn't necessarily result in hiking FT3 to where it needs to be, and depending on your health history, can cause nasty side-effects. Suggest you reduce levo to your full-replacement dose while you are waiting for test results. Ultimately lowering levo and adding in a bit of T3, could be your best bet.
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