I had a parathyroidectomy in January 2023 which resulted in me being hypothyroid (TSH 22.) I was put on 50mg levo which following quarterly blood tests was increased to 75mg in May and 100 mg in November. My blood test last week finally saw my TSH in normal range. It is 2.94 mU/L (range 0.35-5.5) and T4 is 16.6 pmol/L (range 10.5-21. ) Since summer I've experienced gradually increasing leg muscle pain. This started in my thighs & over the last 3 months has spread to my hips & knees & is painful. The pain wanders around my hips, legs & knees & is worse with walking. I'm now limping. I saw a physio recently who after examining me said my joints were fine & he thought it was my body reacting to becoming hypothyroid. However now I'm in normal range & the pain is not getting better I wonder if the brand of levo makes a difference? Initially I was on accord - admittedly only 50mg - but I felt fine. Since summer I have been on teva in increasing strengths. I asked the pharmacist if I could try another make but they said that's all they have. I am seeing my doctor on Wednesday to discuss the blood results & would welcome any experiences people have had about muscle pain & levo brands so that I'm informed when I speak to my doctor. Many thanks.
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Vivirose
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Is this your GPs pharmacy or can you shop around for a different brand?
Teva causes all manner of problems for some people due to the mannitol it contains so I would recommend trying a different brand such as Vencamil which is usually well tolerated.
Your doctor can specify Vencamil by choosing it in their online menu and searching for it by the name Vencamil. It only comes in 100mcg dose size.
If you are not tied to the pharmacy then perhaps try your local independent pharmacy who can order different brands in.
Your results now show that you are in range but your TSH is above 2 still. Most people feel well when their TSH is at or below 1. Insist on a 25mcg dose increase and make sure they don't give you Teva.
How are your key vitamin levels - ferritin, folate, B12 & D3?
Thanks so much for your advice. I can change pharmacy & will shop around. I’ve never been prescribed vencamil so will see who stocks it.
had a private blood test last July & my B12 was ok at 241 (range 145-569) Apart from my TSH being 8.25 the test flagged up my cortisol was high at 545 (no range given) ferritin was high at 164 (range 13- 150) . In a blood test in October my vitamin D was low so the doctor suggested I took a supplement.
The supplements I take are
3 drops of iodine in water when I take my levo pill in the morning
A teaspoon of biocare oesto intensive ( vit D3 K2 calcium & magnesium) in the afternoon
I take 100mg amlodipine in the evening for high blood pressure
Following your & other’s advice I will ask for a 25 mcg increase & for vencamil. Thank you
What was your Vit D result? Most people need a minimum of 3,000iu to achieve optimal levels. The supplemeent you are taking only contains 1,000iu. Suggest you retest and change supplement.
Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150.grassrootshealth.net/projec...
Its not recommended to supplement calcium unless under medical advice.
had a private blood test last July & my B12 was ok at 241 (range 145-569)
That result for B12 is far too low.
B12 - do you have symptoms of B12 deficiency? The reference range for B12 is very wide and cut off point too low. theb12society.com/signs-and...
If you do then you should discuss this with your doctor for further tests for Pernicious Anaemia.
If not, then start with a methyl B12 sublingual spray or lozenge for a week, then add a good B complex. Once you run out of the separate B12 just continue with the B complex.
Folate - aim for a level of 20. Recommend taking an active/methyl (should say on label) B complex which contains 400mcgs folate (also B12). Slightly cheaper options with inactive B6:
Thanks for all this comprehensive advice. I'll look at the links you have given me.
My GP agreed to run a Vit D test last October & the result read Serum total 25-hydroxy vitamin D level 37.8 nmol/l;
The guidelines that came with the test were below 30 nmol/L is deficient; 30 - 50 nmol/L: may be inadequate in some people.Above 50 nmol/L: is sufficient for almost the whole population.
I was advised to take iodine by my herbalist. She prescribes tinctures & teas for me mainly to help my BP & sluggish digestion. She recommended taking 3 drops of iodine when I take my levo pill as this would help its absorption.
Many thanks again for responding. Much appreciated.
If you want to take something to help Levo absorb then acorbic acid aka vit C would be better.
Vit D should be tested twice a year so time to retest your levels and likely need to buy a separate vit D3+ K2 to help it go to your bones. There's no sense taking a vitamin if you're not taking enough, hence testing.
You say in your bio: Blood test in Jan 24 indicates medication at right level TSH 2.94 and T4 16.6.
But the “right level” has less to do with being in range, as it does with your symptoms clearing up.
Further, once on Levo, we see that most people who feel better have a TSH around or under 1. Seeing your so high (in combo with your symptoms) is a flag that you are still undermedicated.
I think you are now on 100 mcg Levo. How much do you weigh? This may be pretty close to dosing guidelines (1.6 mcg per kilo body weight). Just a rough guideline, but good to know. Your FT4 is just a little more than half way through range, so you do have some room for a little increase.
But you also really need to know your Free T3. Free T4 needs to be converted to FT3 to be used, so it’s not unusual for FT4 to be in range whereas your FT3 is sub optimal and causing symptoms.
Joint pain is absolutely a hypo symptom. It’s always a good idea to optimize thyroid hormones first as we find so many things are caused by it.
There may indeed be other causes, but no doubt the under-treated hypo is a contributor.
Thanks for your advice. I weigh 58.5kg so that would be 93.6 so I suspect my doctor may say 100 mcg is sufficient. I will argue for an increase & for my FT3 to be tested.
What is the range for the FT4? If it's 12-22 as we often see on here (ranges vary from lab to lab) your FT4 is only 46.00% through the range, which is much too low. Should be about 75% through. Which is why your TSH is still too high, even though it's in-range. So, even though a lot of people don't get on with Teve, it's more than likely that your leg pain is down to being under-medicated. You need a 25 mcg increase in levo, and your FT3 tested.
OK, so 60% through the range, but could still be higher. And, if you're a poor converter, your FT3 will be low, and it's low T3 that causes symptoms - which is why you need it tested.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg. - with T3 said to be around 4 times more powerful than T4 :
T4 - Levothyroxine is a pro-hormone that needs to be converted in your body into T3 the active hormone that runs all your bodily functions from your physical ability through to your emotional, mental, psychological and spiritual well being, your inner central heating system and your metabolism.
No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal levels -
so it might be sensible to ask for your ferritin, folate, B12 and vitamin D run and we can advise on these results and ranges as just being in the NHS range somewhere is not ok - and some NHS ranges are too wide to even be sensible.
Conversion can also be down regulated by inflammation, antibodies, any physiological stress ( emotional or physical ) depression, dieting and ageing - so worth mentioning - but not so easily resolved.
We generally feel best when the T4 is up in the top quadrant of its range with the T3 tracking just behind at around 60/70 % through it's range and your TSH should be at least under 2 and probably when optimally medicated under 1 and down towards the bottom of its range.
Without a thyroid it is essential that you are dosed and monitored on your Free T3 and Free T4 readings -
though fully understand in primary care doctors seem unable to order T3 testing and just go by a TSH - which once on thyroid hormone replacement is not a true representation of anything and why very many forum members are forced into running their own thyroid blood tests.
Some people can get by on T4 monotherapy - Levothyroxine.
Some find T4 seems to top working as well as it once did and that by adding in a little T3 - Liothyronine - making a T3/ T4 combo they are able to restore hormonal balance.
Others can't tolerate and need o take T3 only :
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids, dried and ground down into tablets, referred to as grains.
You might like to start reading around on Thyroid UK - the charity which supports this forum - thyroiduk.org where here is much more information and a page listing Private blood testing companies if your doctor is unable to help you and advice on how to prepare for a full thyroid blood test.
Thanks for all the information. I haven't had to manage my health before & feel I'm at a start of a journey! I will definitely do more reading as you suggest. Based on what you & others say I think the way forward when speaking to my GP on Wednesday is to ask for retests of FT3 at least & preferably also ferratin & Vits D & B12. Plus an increase in levo to 125mcg & change of brand. I'm not sure how receptive the GP will be. I never 'see' the same GP & my consultations have always been via telephone. However my surgery has just restarted face to face routine appointments & I will be seeing a GP in person on Wednesday - first time since 2020. Many thanks again.
I know - I started my thyroid journey back in around 2016 - it can be daunting as we are programmed to believe and accept that the doctor knows best and if we don't feel better tend to blame ourselves.
All you can do is ask about the blood tests that we need to have to help you better understand where you are and what you can do to help yourself back to better thyroid health.
I've just read you are taking iodine drops - which are not recommended when hypothyroid as we are getting the essential iodine by taking thyroid hormone replacement.
Is this Amlodipine a new drug for you ?
I don't take Levothyroxine any more but there are many who can't tolerate certain brands - so this is a genuine problem and you can specify a brand on the prescription once you know which suits you best.
Thanks Pennymarie, I've been on amlodipine for 2 years. It was 50mg but has been upped to 100mg this month because my blood pressure has gone up. Thanks for the advice about iodine.
Probably still hypo. My knees used to swell before and when on low dose of 50mcg . I'm fine now on 125mcg . Well until it starts losing effect and need another increase that is.
I fully sympathise with you Vivirose about leg stiffness/pain which had been increasing slowly for months for me and I had no idea it was a symptom of being hypothyroid. My TSH was 17 in 2019 on a health screen check but, as I thought I was symptom free, my GP said to just test at regular intervals then lockdown came! I was eventually started on 50 mcg in 2022 and a short while after increasing to 75 mcg I suddenly lost muscle strength in both legs and for several months had to walk slowly feeling as if my legs would give way and I would tip forward. It also coincided with my 4th Covid vaccine and I did think that might have also been a contributing factor. It felt as if the stiffness from waist to knees had dissolved rather like a limp piece of material once some starch has been washed out. I was referred for physio as my left hip flared up badly with bursitis and I still cannot lie on that side. Everything is gradually settling down and my NHS physio and a private chiropractor have both confirmed it is most likely thyroid related.
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Think I've made a mistake!!
New member with lots of questions about levo and NDT
