Hello I am new the forum. Hope everyone is ok. I'm 56, have been taking levothyroxine 50mcg for 4 years. I have never felt brilliant on it but atm I am feeling quite poorly. I had covid in early Jan and was thinking my symptoms were due to long covid. I had a dr's appt and told him my symptoms are frequent strong palpitations, cough and wheeze, joint aches in leg joints and hands and fatigue. I had an ecg and some blood tests. I recieved the results by text which say I am borderline hypo and no mention of changing levo dose and to recheck in 8 week. Cholesterol had gone up from 6.1 to 7.5, despite healthy eating.. The ecg showed ectopics and slight prolonged qt. He put it down to anxiety. I have had occaissional palpitations in the past due to anxiety but nothing on the scale they are atm. I find that a lot of things get blamed on anxiety...but physically I really do not feel well atm. Anyway, the penny dropped with me that my problems are not long covid and more thyroid related and would explain other symptoms I am having. .. very dry eyes, dry mouth, nails splitting, unexplained weight gain and chronic insomnia. My BP has increased and my heart rate is lower. I have had niggly symptoms for about 6 months but put up with them. They dramatically worsened after covid infection..
TSH: 5.8
FREE T4: 14.2
Anyway basically I dont understand why he wants to wait 8 weeks to recheck bloods ..... the tsh isnt going to magically right itself. If I am already on levo and my tsh is rising ..then surely the dose needs putting up now. I am going to c all the doctors on monday and try and put my case forward but I know from past experience it will be difficult.
Apologies for the long winded post.
Any thoughts or advice would be appreciated.
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Juddie
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Your statement "I recieved the results by text which say I am borderline hypo and no mention of changing levo dose and to recheck in 8 week" puzzled me because if you are taking levothyroxine, you have been diagnosed as being hypothyroid.
50mcg of levothyroxine is a starting dose and you should have had increments of 25mcg until you felt much better and TSH was 1 or lower. Your Free T4 and Free T3 should be in the upper part of the ranges.
When getting a blood test for thyroid hormones, always get the earliest possible appointment - even if made weeks ahead. It is a fasting test and allow a gap of 24 hours between last dose of levo and the test and take afterwards. This gives the best results and always state the ranges. Labs differ in their machines and so might the results - ranges enable members to respond.
Also ask for B12, Vit D, iron, ferritin and folate to be checked and always get a print-out of your results.
TSH is too high - the aim is 1 or lower. (I doubt many doctors are aware of this). T4 too low and as it is supposed to convert to T3, I thinkthat it will also be low. It is T3 that is the 'active thyroid hormone' and our brain and heart have the most T3 receptor cells. Our body cannot function without T3.
I'd ask for an increase immediately given you are clearly under medicated. I'd then get a retest in six weeks. Actually I'd get tests done privately and include T3 then return to the doc better informed (read plenty here) with a good idea what you need before you go in. You do look like you've got a bit of a journey to go here (many of us have done or are doing the same).
The aim is really to alleviate your symptoms - and it's likely you'll need your T3 and t4 higher in range - and that your tsh will end up much lower.
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.
Bloods should be retested 6-8 weeks after EACH dose increase in levothyroxine
Dose is increased SLOWLY upwards in 25mcg steps until TSH is ALWAYS Under 2
Most people when adequately treated will have TSH well under one
Ft4 should be in top third of range and Ft3 at least 60% through range
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
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
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)
If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Wow...thankyou so, so much for that info. Hopefully I can get back on track now I armed with the knowledge.
I have been on my online gp surgery records to check previous test results etc.... and its clear....it's not been managed correctly.
Since 2019 my tsh tests have been around 4-5 and each time with the message no action required. Also I only had T4 test done on diagnosis in 2018 and then last week. I didnt question anything... just presumed the Gp's knew best..looking back most of the ailments I have seen the GP's about in last few years, correspond with thyroid issues... yet the connection wasnt recognised. I am kicking myself for not finding this forum sooner
The brand of levothyroxine is Teva, is there a problem with that brand?
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 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
Cholesterol had gone up from 6.1 to 7.5, despite healthy eating..
Cholesterol levels have nothing to do with what you eat. It's made in the liver, and is needed by your brain and all the cells in your body. And, your adrenals need it to make sex hormones.
High cholesterol levels are usually caused by low FT3 levels, because without T3 the body cannot process cholesterol correctly, and it builds up in the blood. But, it does not cause heart attacks or strokes. Do not let your doctor put you on statins - that is the last thing you need! When you are correctly treated for your hypo, and FT3 levels are optimal, your cholesterol level will go down.
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Hi Juddie, I'm so sorry that you've suffered for so long when you didn't need to...I did too.
I got my GP to increase Levo by quoting the NICE guidelines(1.6 x bodyweight)...but he actually wrote to a consultant to check he could do so!!!
Please get privately tested and learn about T4 and T3. It's really sad, but you may need to take control of your own medication ( based on private tests) and maybe even source medication yourself, as I and countless others do....BUT please read, read , read so that you are confident and knowledgeable before you begin that journey. It's taken me nearly 3 years to take control and feel well, because I was scared to go against the GP but many of us have done and advice from this forum will get you to a much better place, just go at your own pace and know that there will be light at the end of the tunnel! Xx
Hi, I would look into a gut cleansing diet asap, especially after covid. May need pre and probiotics for a few months. Eating well: what does it mean? Are you eating for a healthy thyroid? May also need T3 added. X
I got stuck on 50mcg Levo for ages, too. Eventually, to get past the receptionist who was refusing to pass on my request for a blood test I pointed out that the PIL in the Levo packet actually said retest blood in 6 weeks and I’d been waiting for the blood test for ten months.
I’m now on 100mcg and working out my arguments for my next increase. Last time I used ‘but I still have symptoms’ . I haven’t yet used ‘dosage by weight.’ Then there’s ‘well, if you can’t give me an increase and I’m still symptomatic you’d better refer me to an endo. ......Nine months waiting list? Well, I’d better have a TRIAL dose increase while I’m waiting”
Followed up /or proceeded by.....”why do you think I’m over medicated? What symptoms should I be showing if I’m over medicated? If I have an increase I’ll definitely cut back if I have any symptoms like that”
I’m just practicing my arguments here. I need weeks of gearing myself up to feel confident to use them. And they’ll have to be written down. Especially for a phone consultation.
Spoke to my Gp.....as expected, he doesnt really think my test results need acting on. However after much pushing, and trying to fight my corner, he has agreed to increase the levo to 75mcg . They wont test for T3 ir vitamins etc, so I have ordered the test from Medicheck. Have feeling this is all going to be a bit of a battle.
Make sure you get same brand levothyroxine at each prescription
What does prescription say
Teva is only brand that makes 75mcg tablets
As you want to avoid Teva you need 25mcg and 50mcg tablets
Or just 50mcg tablets and cut one in half to get 25mcg
Thyroid levels should be retested 6-8 weeks after EACH dose increase
Likely to need further increase in levothyroxine after next test
Getting all four vitamins tested and supplementing to optimal will help levothyroxine
Come back with new post once you get results
Only do test early Monday or Tuesday morning and then post back via tracked postal service
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
I sent bloods to Medicheck last Wednesday. No results as yet. I thought it be quicker than this, any idea how long it usually takes?I have been taking Teva brand all along so far.
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