Under active thyroid and Painful joints
Hi I am 63 and had RAI 3. I am now under active... - Thyroid UK
Hi I am 63 and had RAI 3. I am now under active. The problem I have is joint pain in hips knees and feet. Any help with pain
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Noisettey
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My joint pain and stiffness has all gone now my Ft3 level has improved.
Have you blood test results so we can see if we can suggest something to help.
Free t4 21. TSH <0.05. I’m on alternate 125/150
It is the Free T3 result that you need along with the other 2. I suffered for 4 years and could barely walk. Because the doctor started testing FT3 I could see that it was too low compared with FT4. In other words my body was not processing the FT4 efficiently.
Adding a small dose of liothyronie to levo solved that.
You sound like me @lalatoot. The pain in my legs and feet and the general weakness of those limbs, means I can barely walk these days. I've gone from strong and fit to sofa surfer with no leg strength, a lot of foot pain and joints that give way without warning on steps and stairs so I have to cling onto rails all the time. When I stand up from a chair I can't straighten right up, and I have to stretch my thigh muscles to get there. It's so weird.
I have the Dio2 gene defect affecting my conversion. I am going to start adding T3 to Levo shortly. I hope it works. I've tried it before and not got on well.
Start on a low dose and increase slowly. It worked for me.
How long before your leg symptoms resolved? And when you say low, what dose did you start on?
I started on 5mcg per day and built up to 20mcg but the balance ov levo and lio was wrong - I am now on 125mcg levo and 10mcg lio. It has taken me a year to get almost symptom free.
Hi FancyPants54 I'm so sorry that your going through terrible symptoms that are so very debilitating. I heard that many on T4 only and that are not good converters T4 to T3 that adding some T3 is very helpful. Nutrients like vitamin "D" magnesium B12 Iron if you test low are also very important and helpful too. Quecetin and fish oils are very good for anti inflammatory purposes.
Wishing you Well-being very soon.
Lalatoot it's great that a small dose of direct T3 helped resolve your aches and pain. How much T3 did you add and how long did it take you to resolve your achy symptoms?
Initially I built up to 20mcg per day over 3 months. It has taken a year of adjusting does for me to feel strong and for all the aches to go.
I am no longer on 20mcg but on 10mcg per day.
Thank you for your kind response. It's great that advocate for yourself and feeling out what dose T3 works for you and what does not. Journalling your symptoms is very helpful to help determine your T3 dose that works best for you.
My problem has been the T4 dose strangely enough. The endo insisted on reducing it by 50mcg even though it was only 60% through range. So I slowly worked my way to her dose of 50mcg levo and 20mcg T3.
When I am low on FT4 I have throat and voice problems. I lost my voice completely. So I have been increasing my levo dose and consequently reducing my lio dose since February.
SlowDragonAdministrator
Just testing TSH and Ft4 is completely inadequate, but frequently all that NHS will test
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 as we get older and especially on levothyroxine
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)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
What vitamin supplements are you currently taking
Come back with new post once you get full results
Ok thank you
Great Detailed information . Very valuable Thank You SlowDragon.
Hi. Had my tests back. Ft3 they won’t do again as done in Feb - 4.7.
Vitamin D 66 no range;
Folate 3.9 (2.6-17.3);
Ferritin 30 (10-420)
Magnesium .85 (0.7-10)
B12 213 (220-700) Been given b12 tablets 50mg one a day!
How much levothyroxine are you currently taking
Do you always get same brand of levothyroxine
Was blood test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
What are your most recent TSH and Ft4 results
What was range of Ft3 result in Feb 4.7 looks low
Essential to test TSH, Ft4 and Ft3 together
cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Vitamins are all too low and especially B12
B12 213 (220-700)
Been given b12 tablets 50mg one a day!
Folate 3.9 (2.6-17.3)
B12 is below range.
Has GP done full testing for Pernicious Anaemia?
Why were you not started on B12 injections?
Marz or shaws may pop along to comment on EXTREMELY Low B12
Recommend you ask advice on PAS Healthunlocked
Folate is far too low
As you have B12 supplements/injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
chriskresser.com/folate-vs-...
B vitamins best taken after breakfast
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
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
With such low B12 seems likely you really need B12 injections
But if GP won’t agree taking a B12 supplement and a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
B12 sublingual lozenges cytoplan.co.uk/vitamins/vit...
Ferritin 30 (10-420)
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
List of iron rich foods
Links about iron and ferritin
irondisorders.org/Websites/...
drhedberg.com/ferritin-hypo...
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.
Never supplement iron without doing full iron panel test for anaemia first. It’s possible to have low ferritin and high iron
Vitamin D 66 no range
are you in U.K.?
Vitamin D measurement should be nmol?
Magnesium .85 (0.7-10)
Are you currently taking any vitamin D or magnesium?
Having test in 3mths for b12 so given tablets to see if they will help. I will get supplements and see what happens. I actually work in drs and had to persuade him to give me tablets!!
Recommend you ask on PASHealthunlocked
Having one autoimmune disease makes others more likely
Pernicious anaemia should be tested for
You shouldn't be prescribed B12 tablets before GP excludes that you do not have Pernicious Anaemia, which means our stomach is not capable of absorbing B12 from food or supplements so we need injections to keep B12 at an optimum level. This involves a blood test before you are given any B12 AT ALL.
P.A. is more serious than the majority of doctors seem to believe and we can develop a more serious illness if undiagnosed and lack of injections. P.A. is more than a low B12.
You need a special blood test for B12. My mother developed stomach cancer due to her GP telling her that blood test was now 'good' that she didn't need any more injections. Both my sister and I thought that was 'good' - little did we know.......
As suggested, go onto the Pernicious Anaemia site for advice. It is a serious condition if undiagnosed/untreated. If we have P.A. we cannot get B12 from food as our stomach cannot absorb it. We then go on to develop very unpleasant symptoms.
I have Hypothyroidism and Pernicious Anaemia and some other auotoimmune diseases.
Ft3 range was 3.5-6.5.
TSH 0.05.
FT4 21.0. (9-25)
I’m on 125/150 alternate for levothyroxine.
I always have same brand
No test for PA
Not taking any supplements except omega 3, H&B CBD capsules, and I was taking turmeric but found made sleep difficult. Should I stop CBD do you think with all the vitamins supplements
You need B12 injections as you are below range. Also Pernicous Anaemia should be ruled out. You have VERY poor absorption. Gut issues ?
Hello Noisettey
Do you have Graves Disease and the reason why you had RAI thyroid ablation ?
I too am with Graves and had RAI back in 2005 and became very unwell about 8 years later and manage lingering Graves symptoms, thyroid eye disease and hypothyroidism.
RAI is a slow burn and ultimately your thyroid is totally disabled and you become hypothyroid.
Primary hypothyroidism caused by RAI is more difficult to treat :
RAI is known to " trash " vitamins and minerals :
No thyroid hormone replacement works well if ferritin, folate, B12 and vitamin D are not maintained at optimal levels :
It is imperative that you are dosed and monitored on T3 and T4 blood tests results though it does seem that in primary care all you generally get is a TSH blood test result.
A fully function working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3 : T4- Levothyroxine is a storage hormone and needs to be converted by your body into T3 the active hormone that the body runs on. T3 is said to be about 3/4 times more powerful than T4 and read most people use about 50 T3 daily just to function.
Your own conversion of T4 into T3 can also be compromised by other underlaying health issues, ageing and any physiological stress ( emotional or physical ) to name just a few.
T3 - Liothyronine can be prescribed by an endocrinologist for a trial, should it be thought that you would benefit from this addition to your T4 :
The other option is Natural Desiccated Thyroid which was successfully used to treat hypothyroidism for over 100 years prior to the blood tests, ranges and introduction of Levothyroxine as the " preferred treatment option' : NDT is pig thyroid dried and ground down into tablets referred to as grains and your doctor can prescribe on a named patient only prescription but it does need approval by the CCG for additional funding as it costs more than Levothyroxine, and it seems very few medics go this route for their patients.
I found myself on this site looking for help a few years ago and there is much you can do for yourself, but you will have to become your own best advocate as Graves seems a poorly understood and badly treated autoimmune disease.
Your thyroid was the victim in all this and not the cause, as the cause is your immune system attacking your body, but now you haven't a thyroid the symptoms you may experience aren't considered life threatening and seem to be of no interest to the medical profession.
You might like to take a look at the Elaine Moore Graves Disease Foundation webstite - this lady also has Graves and went through RAI and finding no help with her continued symptoms started researching herself. She now has several books published plus a well researched and respected website and a world wide following.
Your Thyroid and How To Keep It Healthy is a book written by a doctor who has hypothyroidism. Barry Durrant-Peatfield writes in an easy to understand manner and we do need to know what we have lost in order to compensate, as best as we can, where we can.
I asked my doctor for NDT in around 2015 and was dismissed with some anti depessants.
I saw an endocrinologist in early 2018 - first one in over 10 years - but was refused a trial of T3 - Liothyronine.
I am now self medicating and buying my own thyroid hormone replacement and organise my own private blood tests yearly.
I'm a work in progress, as we all are, and it's a massive learning curve but thanks to a few books and for the most part this amazing forum, I've managed to turn things around for myself, and so can you.
Pannyannie, Great information and great suggestions. With my thyroid journey I learned that I *Must* advocate for myself . When I allowed my Dr's to dose me by labs only I was having all sorts of aches/pain. Once I advocated for myself and changed Dr's that's when I felt new found much needed relief with my symptoms. In my experiences over the years I found that Dr's really don't understand how to dose thyroid patients. Unfortunately.
Thank you for your reply. I haven’t seen an endo since RAI and yes I have Graves. I find the problem is I do have osteoarthritis in one foot and knees so drs say that is problem. But I thk there’s more to it. I get horrendous pain in my hip. Can’t walk for a day next day it’s gone. Feet are a problem as well and I end up walking like a 90 year old. I’m on Levothyroxine, Amitryptline supposedly for pain!! HRT, CBD capsules and Turmeric and usually either paracetamols or Ibruofen for headaches. In other words I rattle. I wd just like one day without pain😔
Low Ft3 can cause terrible bone and foot pain
Come back with new post once you get results
Hey there
I totally understand as I've had similar issues, but I have to say, that when I'd built up my vitamins, minerals and adrenals, I felt better but then when I added T3 to my T4 I was so much better.
I was suffering with severe reduced cognitive function as well as the aches, pains and walking around feeling as though I was with constant "flu, and virtually housebound.
Please get the blood tests as suggested as then you'll receive informed detailed opinion about what you can do to alleviate some symptoms and also start to read up and learn how to work, hopefully with your doctor at getting a trial of T3 if your results show low T3 and or poor conversion.
P.S. Just to say if you want to reply to someone in particular you need to press on the reply button under their post, and then you'll see come up " in reply to " ........ :
They then get notified that you have replied so will come back in to reply to you.
Start a new post with the ranges and results as posts tend to have only a few days " life " as due to the volume of posts to be answered the admins generally " don't look back " when they have already answered, and deal with each new post as a new question.
So just give a brief recap, and they will look back should they see it as necessary.
Hi
I’ve suffered really badly with this. In all my joints and muscles for over two years since the treatment. The only thing that keeps me going is daily yoga practice first thing while waiting for my levothyroxine to go down. I use an online yoga school With on demand classes. Some days it hurts but it’s worth it because walking more than a mile is too exhausting and painful. I also take magnesium., B12, Q10 etc. I’ve started taking organic liquid clean extracted turmeric which really helps but very expensive. I think it’s worth it though. Some days I have to sleep for a couple of hours in the afternoon and some days i am ok. No particular reason I can think of.
I hope you are able to manage your symptoms long term. I am sure everyone is different.
Hey there,
I've also read in Elaine Moore's first book Graves Disease - A Practical Guide - that RAI treatment, can induce symptoms similar to that of fibromyalgia and, or, also, symptoms similar to that of Sjogren's Syndrome.
Hey there again
Just thinking " treatment " and " therapy " are generally used in association with RAI - maybe if the terminology were changed to " disablement " we wouldn't feel so aggrieved ?
I am beginning to think that this 'treatment' is of the same order as lobotomy and ECT both of which I regard as deliberate violation.
For any joint pain applying Magnesium lotion direct to the painful joint can be very effective. My mum uses it a lot for her arthritis now. Low B12 is very commonly a cause of balance issues and 'wobbly' sensations. Really low B12 over time can cause permanent nerve damage, so it's vital to get this checked along with your t3 and vitamin D tests.
My mum, daughter and I use topical magnesium lotion for back pain, arthritic hands and knees, leg cramps, stiff neck, period pain and even anxiety. My daughter and I rarely take painkillers now and mum's been able to cut down.
I had a total Thyroidectomy followed by RAI almost 30 years ago and have been on various combinations of T3 and T4 over the years. Joint pains started when on T4 only and stabilised now on T4 200mg and T3 5mcg daily. Also take Calcium, Magnesium, VitD and Multivit daily. My kidneys / liver cant seem to tolerate anti-inflammatories and causes swollen ankles etc. Also use topical Magnesium for joint and tendon pain. Low carb grain free diet, yoga and low impact exercise when pain free helps a lot.
The best thing I have found for pain is Palmitoylethanolamide. It's a newer supplement that is not widely known. There are actually 2 different supplements nicknamed PEA so make sure you get the right one as they aren't both for pain.
Hi, I had the same problem after having RAI, I was found to be deficient in Vit D and Ferritin which GP corrected but I continued to have pain in legs, knees and feet and I could hardly walk on getting out of bed in the morning. I did a little research on line and started to take magnesium and zinc as well as continuing with Vit D ( I have been advised by GP to take Vit D indefinitely) I also take Vit B complex and I now have no more problems and I can continue you walk briskly daily which I struggled to do before . So you may want to try this to see if it helps you. Before having RAI, I had never been deficient in any vitamins or minerals so it seems too much of a coincidence to start now. I was also very tired and the endo who discharged me from the clinic said my thyroid levels were fine and to discuss my health issues with the GP as it seemed I may have chronic fatigue. On taking the vitamins and minerals I vastly improved. My T4 and T3 levels were fine so the endo didn't want to know, I was lucky my GP did tests for Vit D and ferratin. I sorted the rest myself. Good luck!
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