Hi, I’m new to the forum, thank you for sharing it has given me hope in finding my way through with what am starting to believe what might be a problem with my Levothyroxine medication
I had full thyroid removal in June of 20014 and had another return operation in 2015 to remove infected lymph nodes from my neck
I won’t bother to go into the ins and outs of the challenges relating to the healing process for me but I would like to share and ask for any insight to my current situation.
Over the past year, what started of as what I thought was just an ache in my groin, and was passed of as just a lymph node blocked - was advised to massage it - then my over time the ache has spread, my back aches it feels like I have bad sciatica now. I’ve been back to the doctors with the pain, it’s deep in my limbs mainly on the one side. iv had hip xrays, general wear and tear for a woman my age apparently- I’m 64. I’ve been prescribed codiene and naproxen
I walk like a robot, I can hardly describe the shinanaganas I go through to get clothes on in the morning- if I even bother to change.
Could my 150mcg of Levothyroxine be a contributory factor. I’ve tried, massage and acupuncture I’m desperate to find a way forward
I’m not a negative person, I love life and would really appreciate some insight .
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dandiliontilt
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Yes it could be. You can have poor conversion of levothyroxine into active Ft3 and/or low vitamin levels
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
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 reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have low Ft3
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?
Do you always get same brand of levothyroxine
Are you currently taking any vitamin supplements?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of where TSH is) ...important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
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
Are you currently taking Teva?
Teva, Aristo and Glenmark are the only lactose free 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
This morning I have signed myself up for my full medical records.
Contacted my doctor for full, as you mention blood tests.
I also contacted my consultant, as he advised that I should always go to him for the bloods. So he is sending me a full blood request form. Which I should receive within a couple of days, I’ll go along to the hospital to have them taken all ready for a consultation on 9th October.
Thank you for your support, I’m inspired by the thought of regaining at least some of my old self. I can’t tell you how helpful you’ve been.
The dept taking bloods open at 8 so I’ll be there for then.
I’ve just looked and my levothyroxine it by the manufacturer tevo. I have not started them yet and have others I can use first. I’ll try to avoid using them altogether I really don’t want to be feeling any worse.
Please can you add the ranges on results (figures in brackets after each result)
And do you have a Ft4 result
Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?
I’ve just had a thought. I am having to use naproxen for last for days and today also. Will this be a problem when it comes to my thyroid tests.
I have received the relevant paperwork from the hospital for the blood tests it’s asking for a full blood count and a couple of other things that I can’t read.
This medicine may affect certain lab tests. Tell all of your health care providers and lab workers that you take this medicine (naproxen tablets and capsules).
Never supplement iron without doing full iron panel test for anaemia first
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Will need to test TSH, Ft4 and Ft3 together privately
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).
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
GP should test for PA before starting on B12 injections
Many hypothyroid patients have low B12 and folate....but not PA
But need to test to rule out PA first before starting on any B vitamins
GP should also prescribe folic acid supplements for low folate (shouldn’t start these until 48 hours after first B12 injection)
But once you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. Better than just folic acid
This can help keep all B vitamins in balance and will help maintain B12 levels between injections too
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
I really cannot understand why you have not been properly monitored after having your thyroid removed. The thyroid is the powerhouse of the body and affects so many functions of your body. One of the first signs I had that there was something wrong was my hair falling out and my nails lifting off their beds. I showed this to my doctor and his response was I was going through the menopause I was 47 at the time and I actually did not go through the menopause until I was 55. I was then back and forward to my surgery for over 2 years until a new GP spotted my TSH was 0.002 and I had a goiter and that was only because I asked him after asking Elaine Moore for advice on her site. By that time I looked and felt very ill and if it wasn't for support sites like this one and in the US I would have probably ended up dead. Sorry if I sound negative but I hear stories like yours over and over again and I really do not know why so many people without a thyroid or who have thyroid disease are treated this way.
Can I just add that a fully functioning working thyroid would be supporting you daily basis with approximately 100 T4 + 10 T3 plus trace elements of T1. T2 and calcitonin.
T4 is branded as synthetic Levothyroxine and T3 is branded as synthetic Liothyronine.
T4 is a storage hormone and needs to be converted by your body into T3 which is the active hormone that the body runs on, and is said to be about 4 times more powerful than T4.
Your conversion of T4 into T3 can be compromised if you vitamins and minerals are not maintained at optimal levels and you may need to supplement ferritin, folate, B12 and vitamin D yourself as though they maybe in the NHS range thereby considered acceptable, but not good enough for you to regain optimal health.
Conversion may also be compromised as we age, if suffering other illness, chronic pain, depression, to name but a few, but at least we can start to shore up our core strength which was where I started when I found this amazing forum a few years ago in my late 60's.
The thyroid is a major gland responsible for full body synchronisation, and your boy's engine, and the controller of your mental, physical, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
It is essential that you are dosed and monitored on your T3 and T4 blood test results and not a TSH result as your feedback loop is now broken as you do not have a thyroid gland.
This quick fix, cheaper single blood test, doesn't give full enough information as it is the relationship between your T3 and T4 levels that needs to be monitored with the intention being to find both T3 and T4 balanced with both hormones being in the upper quadrant of their ranges at a level acceptable to the patient that restores well being and good health.
It does seem in primary care that the TSH seems to be the only blood test and so you may need to pay privately to have these crucial blood tests undertaken. There are full details of so much information on the Thyroid uk website, the charity who support this forum and you will learn much by just reading up there, and on other people's posts on this forum.
It's a massive learning curve, but you can turn so much around for yourself if faced against the proverbial brick wall and you'll receive help and support from other forum members who have been through similar situations.
I'm with Graves Disease and following RAI thyroid ablation in 2005 became extremely unwell some 8 years later, and having been referred to as a conundrum by my doctor, found myself on here looking for answers - which I found - and am now so much better, it beggars belief.
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