I am a 61 year old male initially diagnosed in July 2020 with autoimmune thyroidism (Hashimoto’s). I consulted my GP following a private blood test (Thriva, June 2020) taken to check my liver function and vitamin D level (out of range liver function tests ALT - 110 (10-50), GGT - 255 (10-71) since 2014 due to a progressive increased sensitivity to alcohol despite modest and reducing alcohol intake (currently <1 unit per week to keep GGT just within range).
Coincidentally the Thriva blood test package included thyroid function tests - I was surprised when the results came back out of range with a recommendation to consult my GP:
TSH - 11.03 (0.27-4.2)
FT4 - 10.3 (12-22)
Iron – 22.1 (10-30)
Ferritin – 60 (30-400)
25 OH Vitamin D – 92 (75-175)
After a brief telephone call to my GP she ordered an NHS blood test (July 2020):
TSH - 9.12 (0.55-4.78)
FT4 - 11 (9.0-22.7)
Thyroid TPO Ab - 838 (0-60)
She was initially a bit hesitant to start me on levothyroxine, since my FT4 was within range. So I described my symptoms (feeling cold, stiff and aching joints - mainly legs and the fact that general fatigue/weariness had persuaded me to retire from full time work in 2019) – this changed her mind. I was started on 50 mcg levothyroxine in July 2020 with a repeat blood test in 4 mths. Out of interest and partly prompted by reading the guidance on this forum I had a Medicheck thyroid blood test in early Sept 2020:
TSH - 2.97 (0.27-4.2)
FT3 - 4.71 (3.1-6.8)
FT4 - 13.7 (12-22)
NHS 4mth blood test result (Oct 2020) results were similar but didn’t include FT3:
TSH - 2.77 (0.55-4.78)
FT4 - 14.0 (9.0-22.7)
Telephone call with GP to discuss results - results in range, no need to do any more. Hang on! - I described continued stiffness and quite debilitating knee pain (Baker’s cyst on one knee) and trigger finger in my middle fingers, still feeling cold (I generally run at 36.3C, but as low as 35.8C when sedentary), and since Aug 2020 tinnitus in both ears. My resting heart rate is in the low 50’s and as low as 43 bpm when watching TV in the evening (and struggling to concentrate but no other noticeable effects). I am fairly active with a range of interests but certainly not an athlete! I quoted the British Thyroid Foundation advice (thanks to this very helpful forum) that many patients feel best when T4 is in upper part of range / TSH is in lower part – so can I aim for that? GP agreed and increased Levothyroxine to 75mcg, and ordered X rays of my knee and hands.
My knee issue has now spread to both knees and I feel so stiff that walking is initially painful. During my daily walks I do loosen up but still very sore and knees feel weak. The pain seems to spread beyond the knee joints into the muscle and soft tissue below the knees, so I am not sure if its tendonitis rather than joint related - this might fit in with the trigger finger issue? Hopefully my GP will be able to get a better picture of what is happening when the X-rays come back. I previously consulted a different GP in Aug 2019 about the knee pain when it was particularly bad (no recollection of any injury that may have caused it) - he ruled out arthritis (although he confirmed some age related joint wear), and gave me a standard knee exercise sheet.
My reading around the topic has revealed a lot of evidence for musculoskeletal issues caused by hypothyroidism, although at present I don’t think my GP thinks the two are related.
My question to this forum is have other people experienced this and how long should I wait before exploring other causes? And should I wait until my FT4 is higher (and what should I aim for?), and if so how long for hypothyroid musculoskeletal issues to resolve? I can cope with the tinnitus, feeling cold and I am usually motivated enough to ignore the tiredness, but I am most concerned about the pain when walking (which I enjoy doing). I don’t want to spend the remaining 20-30 years of my life hobbling and avoiding hills!
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Bloods should be retested 6-8 weeks after EACH DOSE INCREASE
Levothyroxine doesn’t “top up” failing thyroid it replaces it, so it’s important to increase levothyroxine dose upwards in 25mcg steps until on, or around 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.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
Thank goodness your GP increased to 75mcg. I went through three increases. Each time the specialist asked how I felt until I reported back that I felt normal. However, what I thought was normal for several years was actually poor conversion and left me paddling above water to stay afloat. It's important to go through at least a few increases of Levothyoxine to ascertain your body's ability to to convert the Levothyroxine into optimal amounts of T3. I read of people sitting on a low dose for too long and then claim it's not working and yes you have to tough out the symptoms and it may be agonizing at times. The aches and pains, joint stiffness and much more is down to low thyroid hormone. It can be disabling. I got the run around with the xrays and even sent to a chiropractor, put on steroids, and physical therapy when all I needed was my T3 levels raised. All a Doctor can do is look at the numbers on reference ranges but optimal thyroid levels are individual to each person so only you will know when you get there.
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
All patients who are hypothyroid should have B12 tested
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
Patients with AITD have a high prevalence of B12 deficiency and particularly of pernicious anemia. The evaluation of B12 deficiency can be simplified by measuring fasting serum gastrin and, if elevated, referring the patient for gastroscopy.
Levothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.
I have been a regular blood donor for the last 40 years and in the last 10 years I have been rejected several times for having too low blood iron levels (threshold set for donor health reasons). So it does suggest I have had lowish iron levels for some time (which I have tried to correct through dietary improvements). Lately I have been taking a vitamin D and general vitamin and iron supplements but even with these my vitamin D level and iron levels are not especially good, although I was accepted at the last donation session I attended a couple of weeks ago. Having hypothyroidism / Hashimotos's is OK to donate blood apparently as long as your TSH is in range and under control!
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
Thank you - the reference to the NHS LT3 guidelines is really valuable - it provides me with an authoritative reference for optimum TSH range when being treated with levothyroxine which I can quote to my GP!
Unfortunately many GP’s think if you are only “a little bit hypothyroid “ you only need “a little bit of levothyroxine “
As soon as we start on levothyroxine the feed back mechanism means it’s almost always necessary to slowly increase dose upwards until on, or near, full replacement dose
Thank you for your detailed response, I think I need to follow your advice and look carefully at my iron and vitamin levels. Your point that levothyroxine is taken as a replacement rather than a top up is especially helpful. It also makes sense now why my resting pulse appeared to initially increase, then decrease, before recovering a bit (to a lower level) after starting/increasing levothyroxine (over periods of weeks). Now clear to me that as TSH decreases with LT4 therapy the thyroid does less and less, so bit of a one way street. I have also found out (Norwegian Nord-Trondelag population study paper) that the population mean (people without known thyroid disease or diabetes) TSH is around 1.5 with a 2.5% lower percentile of around 0.5. So the target values you mention make perfect sense - especially when considering that at full LT4 replacement the normal TSH control mechanism will no longer have any effect on the thyroid, so if the body asks for more it won't get any (nor can the LT3/LT4 ratio be altered, which judging by a lot of posts on here that seems to cause some people a lot of problems).
“According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”
“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”
TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.
Hence why we always recommend testing as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Numerous articles and research papers calling for reevaluation of thyroid testing and treatment
Unfortunately I’m at the start of my journey and still struggling to even get a prescription for any meds with my TSH at 13.31 and FT4 below range and my TPO antibodies at 1159.8 .... the only thing I can say is that the people on here are so helpful and will help you every step of the way, as they are doing for me too.
I too am really really struggling with pain in my joints and muscles mainly from hips right down to my joints in my toes, my knees and my muscles throughout, including my arms. I’m struggling to walk on a daily basis and have been in tears on the phone to my gp over this pandemic but they also don’t seem to see the connection. I’ve been tested for rheumatoid arthritis also and now as the results have come back negative they’re thinking it could still be arthritis but I strongly feel there’s a connection as I’ve only felt this way since my body has suffered and I insisted my thyroid was checked.
Wow, that is hard to believe you can’t get treatment with those levels. I stopped taking my thyroid meds for 3 1/2 weeks as an experiment. By the third week, I felt like my ankles were broken. My feet were also in pain along with numbness and tingling. It only took a few days of restarting the meds for the symptoms to disappear. I would be willing to bet that your symptoms are from low thyroid. I hope you will get the treatment you need. P.S. - I found that taking a combination of T4/T3 helped with the joint and muscle pain.
Ah that’s awful that you’ve had that experience but it does make me feel like there’s a light at the end of the tunnel once I get to speak to an endocrinologist (30th November telephone appointment booked) my GP recognised that there’s a clear cut case that I need meds but just will not prescribe me anything ! Honestly I couldn’t believe it and was in tears on the phone after being now almost unable to walk because of the pain since may and she’s now got 3 sets of lab results showing that I’m in need of medicating. I’ve had to ask to change GP and have put in a complaint too. I’m just praying that I get a good endo and that I can be more reliant on them than the GP who clearly just doesn’t understand.
I know that Nov 30 will seem like an eternity when you don’t feel well. Since you have elevated antibodies, it looks like you have Hashimoto’s which is autoimmune. GP might not have wanted to treat you because occasionally the thyroid recovers and returns to normal. In most cases however, there is permanent damage and treatment is necessary. Best wishes!
GGT - 255 (10-71) since 2014 due to a progressive increased sensitivity to alcohol despite modest and reducing alcohol intake (currently <1 unit per week to keep GGT just within range)
There are other causes of raised GGT besides alcohol. A diet high in carbs and sugar may also raise GGT, and could be causing liver inflammation and fatty liver.
Humans can't live without protein and fat, and the body and brain need both, but they can live without carbs (although eliminating carbs entirely is probably not a good thing to do, particularly when you have thyroid problems).
If you want some advice on healthy eating I like this website :
Optimal for iron is (21 - 24) with the reference range you've provided and yours is already optimal but does have a little bit of wiggle room to go a bit higher, up to 24 maximum.
But your ferritin (iron stores) is very poor. Optimal for most people is mid-range or a bit higher, approx (215 - 300) for the range you've been given. You might even be able to go higher than 300 since you are male.
The problem with iron is that supplementing to improve ferritin may push serum iron up far too high. The two things aren't independent and unless you've supplemented iron before you won't know how your body will react to supplementing. Your iron may stay reasonably optimal while ferritin rises (which is what you want to happen given your current results), but it is also possible that your ferritin might stay low while your serum iron shoots up, or they might both shoot up.
This link explains some of the problems that could happen :
If you are prepared to experiment and pay for regular iron testing (at least for the first few months) then you could supplement iron and see what happens. If any results start to shoot up then you should stop supplementing. If your results do what you want then you could reduce testing frequency. Just remember that iron is poisonous in overdose.
This is the best iron panel I know of that can be done with a finger-prick sample and without involving doctors :
Obviously if you can get your doctor to do an iron panel for you it would cost nothing, but the likelihood is that they would only do a Ferritin test or a Full Blood Count. But you never know - it is worth asking.
If you get more iron results post them in a new thread and ask for feedback.
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You need a vitamin B12 and folate result - they are often low in people with thyroid disease.
Vitamin B12 testing comes in two forms. There is serum vitamin B12 and there is Active Vitamin B12. The Active test is the better of the two tests, but the NHS still just does serum Vitamin B12 testing as far as I know.
There are differences of opinion about optimal for serum Vitamin B12 :
1) Above 500 ng/L
or
2) Top half of range
or
3) Top of range
or
4) Up to 1000 ng/L
For Active Vitamin B12 optimal is over 100 pmol/L up to the top of range.
Personally I keep my vitamin B12 very high - well over 1000 ng/L. It isn't poisonous.
You should find the links on this page helpful on the subject of B12 :
Folate - Optimal for folate is upper half of the reference range. If the reference range has no upper limit go for a level of about 15 - 20 ug/L or 20 - 30 ug/L. A link that is well worth reading on the subject of folate :
If you ever want to check your vitamin D level then you can use this link to work out what you should be supplementing (if you need to supplement - and most of us with thyroid disease do) :
There are co-factors required to make the most out of vitamin D in the body. Search the forum for info on magnesium and vitamin K2.
Magnesium is particularly important for muscle health.
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Have you been tested for autoimmune thyroid disease, also known as Hashimoto's Thyroiditis, also known to patients as Hashi's? There is another condition called Ord's Thyroiditis as well, but he rarely gets a mention in any modern literature.
90% of cases of hypothyroidism in the UK are believed to be caused by Hashi's (or possibly Ord's but nobody ever mentions him).
If you have autoimmune thyroid disease then it increases the chances that you have rheumatoid arthritis. Once a person has one autoimmune disease they are much more likely to get another and possibly another and another...
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One thing I haven't asked...
Are you taking any other prescribed drugs? And for what conditions?
Always give up iron supplementing for 5 - 7 days before testing anything iron-related.
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There is also an issue with testing anything at all if you have been taking supplements which contain biotin. B Complex tablets usually contain biotin. It can cause problems with distorting results of testing, and should be stopped for 5 - 7 days before doing any testing.
Really grateful for your advice. There is a lot to digest but I think you have raised a valid point about iron and ferritin levels. I do take vitamin D and other supplements but no other medication (my wife is in charge of the supplements so I will find out exactly what!). I mentioned in a reply to Slow Dragon that over the last 10 years or so I have been rejected a few times for blood donation on account of low blood iron (they do a simple screening test before donation, but they do stress the threshold is quite high).
I should have mentioned perhaps that I eat a low carb diet and BMI=21, so my high liver GGT is less likely to be due to diet related fatty liver disease. GGT did reduce as soon as I backed off on alcohol 6 years ago but it seems to be a moving target and I am now practically tee-total but GGT only just in range. I am aware that there is some scientific evidence that low thyroid function can also cause poor liver function.
I found that no matter how much Levothyroxine I was on, or how close to the lowest range my TSH was, I continued to have joint pain, muscle pain and cramps. I finally switched to Armour thyroid (NDT) which contains T3 as well as T4. I no longer have those symptoms with this form of medication. I’ve suffered from hypothyroidism since 2001 and I’m also the same age as you. At one point I switched back to levothyroxine and the joint and muscle pain came back. I believe some people need both T3 and T4. This might be something to discuss with your doctor. There is also a synthetic form of T3 that can be taken with levothyroxine. Hope this helps!
Have you considered taking the DIO2 gene test. This will determine if you are very poor at converting T4 Levothyroxine to active T3 naturally. T3 is so so important to our wellbeing.
I had years of muscular skeletal issues on Levothyroxine alone. I’ve since been diagnosed as a poor converter T4 to active T3 by blood tests and a positive DIO2 gene test.
I’m now on T3 medication plus Levothyroxine T4. Oh boy what a difference T3 medication has made to my life. From literally grinding to a halt and having to leave my brilliant job to now walking 10 miles with ease and punching the air all the way.
If you decide to have the test you can get it through Regenerus Laboratories as promoted on here. I paid about £165 for the test plus a trained person to call me and interpret the result. As mine was positive I sent a copy to my GP who scanned it onto my NHS file 12 months or so ago. I now get T3 medication off the NHS. Although I did go private initially.
I’ve never felt as fit and agile in about 20 years. It could be your answer also. I’m 62 and my symptoms went really bad when I was 59. I spent over year being unable to walk or sit up. Now with T3 I feel alive and 20 years younger.
Try and get your t4 and t3 75% up through the ranges. TSH for me to feel well has to be between 0.2-0.6 and anything higher makes me ill. If i was TSH 2.97 i would be flat out on the sofa all day! So you probably need to increase your levothyroxine.
I had global joint pain for 5 years solid before i managed to get Celebrex - a COX-2 inhibitor - and it changed my life. Having hashimoto’s (like you do!) causes an attack on tendons in particular causing trigger points and inflammation. Its like a global arthritis basically. All part of the fun of Hashimoto’s!!
Dont let them give you gabipentin or pregabalin- they are vile and addictive. If they force you to try them first (they are cheap! say no more) then just tell tell them they made you vomit and then get Celebrex.
I’m similar age and had to deal with all this for last 6 years and only just getting the hang of it and it’s almost never perfect. But here’s what I learned..... lab range is not your healthy range, the lab is far too wide to be anything other than indicative of a direction over time. But, as a snaphot particularly without all three of TSH FT3 & FT4 it tells you almost nothing of use to manage your condition. Your best starting target for blood levels is probably your healthy peer group normals which are much more commonly tsh 1.0, ft4 14-16 ft3 4.5-4.8 so your likely optimum is around these but you need to monitor all three to make reliable judgments about each of them individually, plus, of course, your signs and symptoms being better or worse in relation to observed blood levels and replacement doses. In my experience resting pulse is a great indicator of thyroid status and mine does like yours so I know if my ft3 in particular is too low if daytime resting drops below 50 and sleeping less than 45. Overall cardio fitness has a bearing of course but the heart is very sensitive to ft3! Your test results on medication suggest that t4 is still too low but that you convert it to t3 quite well so may never need t3 replacement, lucky you. However, even your lower reported TSH levels are more than double normal healthy even though your GP is judging them ‘in range’ - taken with your physical symptoms and clearly lower range ft4 compared to your healthy peer group, your body is most likely still asking for more t4. The other potentially confounding factor is the thyroidal effects on male sex hormone balance, over active TSH codes lead to increased prolactin and almost any therapeutic dose of levothyroxine can increase SHBG from the liver which mops up free testosterone. The net effect of both of those is significantly reduced free testosterone -possibly to deficiency. That can cause many similar to hypothyroid and therefore confusing symptoms. First step though, get your thyroid stable with repeat blood tests every 6-8 weeks and symptom diary. Initially aim for tsh 1.0 ft3 4.6-4.8 ft4 15-16..... that said time of day and the labs testing range may deliver slightly different results so always let your symptoms be your guide. TSH over 2 is not normal whatever they try to tell you. It may be ok for you but it’s unlikely and not common in completely healthy individuals (most common is 1.0 average is 1.8 and it can be double at 2am what it is at 2pm because of the natural normal circadian rythym).
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
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 (or in middle of night)
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
Hi davephoto, i had exactly same symptoms, starte taking curcumin 4000 from good health naturally over 18months ago! Pain and stiffness have got much better and lumps in palm for trigger finger have stopped growing. They are real good for inflamation so well worth a try! Hope you feel better soon.
I'll just throw this out there for what it's worth. I was struggling with muscular aches, especially in my shoulders. I began supplementing with magnesium and that helped a bit. But recently, I began taking Actif Super Ubiquinol CoQ10, 200 mg and now the pain is almost fully gone.
Hi Dave
Do consider cycling as it's non-impact and you should be ok?
Lots of runners have come over to my sport of cycling, after knee and hip pains.
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