Levothyroxine side affects: I have for the last... - Thyroid UK

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Levothyroxine side affects

I have for the last 4-6 months really struggled with joint pain to the extent that I was in tears. I’ve just read that one of the rare side effects of Levo is: limp or walk favoring one leg

pain in the hip or knee

I have both, been drs numerous times had bloods for RA, bone cancer and gout - nothing! and given naproxen and now amitryptiline. It just seems to be getting worse. I am on 125mg daily after RAI 2 years ago.

Is anyone else suffering from this

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How long have you been on Levo - longer than you've had the joint pain?

Did the pain come on after a change of brand of Levo or are you still on the same brand?

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I’ve been on levo since my RAI. I don’t know if they’ve changed brands I have a feeling they have. I used to get a serious pain in one place for couple of days then disappear. The aches have been really bad for about 6 months but getting worse

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What brand are you using now?

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Actavis

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Also mercury before that

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If you are taking a 100mcg tablet and a 25mcg tablet, what is the brand of the 25mcg one, Actavis don't make a 25mcg one.

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MA holder TEVA and Mercury

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Have you noticed these side effects when using a particular brand?

Teva brand has caused serious side effects for many members. It's a lactose free brand and they use Mannitol which no other brand uses, and it's possible that it's the Mannitol causing the side effects.

However, if you can't pin it down to the Teva brand you may be reacting to any of the fillers in any of the brands so check them out here

thyroiduk.org/tuk/treatment...

Once you find you do well on one particular brand, it's best to stick to that brand and not chop and change. If your pharmacy gives different brands then ask for them to supply only what suits you. Check your pharmacy bag before leaving and hand back what doesn't suit you. If necessary ask for your prescription back and ring round other pharmacies to see who can dispense the brand you want.

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I will check that thank you. I work in drs so can keep eye on my script (we have pharmacy attached)

It’s a good job you asked me to check because I had actually got 2 x 100 packs out so had 200 this morning. Funnily enough I don’t ache so much tonight!!!!

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I had actually got 2 x 100 packs out so had 200 this morning. Funnily enough I don’t ache so much tonight!!!!

Ah! I wonder if you are undermedicated?

What are your latest results for

TSH

FT4

FT3

Also joint pain can be caused by low Vit D level so always advised here is to check

Vit D

B12

Folate

Ferritin

All nutrient levels need to be optimal (not just "in range") for thyroid hormone to work properly.

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I thk maybe psychological!! Ive has bloods done this week so no results yet. Last ones in May were TSH 0.35 (.30-5.0) and ft4 21 (9.00-25.0) t3 last done in November 3.80 (3.50-6.50).

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FT3 is far too low

FT3 needs to be at least above 5, if not higher

Extremely poor conversion can be low vitamin levels

You need vitamin D, folate, ferritin and B12 tested

Presumably you have Graves if had RAI. Low vitamins are extremely common with both Hashimoto's and Graves

Are you on strictly gluten free diet or tried it?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

is this how you did the last test?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Come back with new post once you get results and ranges

GP likely to have only done TSH and FT4 which is completely inadequate

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Thank you. Bloods not done fasting and had taken dose in morning!

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Had up to date results TSH 0.17(.30-5.0) and ft4 16(9.00-25.0) t3 4.10(3.50-6.50). All within range and to continue on meds 125mg!!!!

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So were these test results from test done early morning, fasting and last dose Levothyroxine 24 hours prior to blood test?

FT4 only 40% through range

FT3 only 20% through range

Very useful percentage calculator

chorobytarczycy.eu/kalkulator

Clearly you need dose increase, but GP only looking at low TSH

Absolutely ESSENTIAL to test vitamin D, folate, ferritin and B12

Request GP does so now

Or after 6-8 weeks on constant unchanging dose and brand of Levothyroxine get FULL Thyroid and vitamin testing

Or many thousands on here forced to test privately

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Gluten free diet helps thousands who have Graves' disease.

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

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selenium is essential for t3 conversion

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The last pack I used was teva so I will see what happens with the mercury x

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I have loads of 25’s so sometimes one or other

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I could not take any kind of Levo or the pig thyroids. They all gave me heart palpitations and headaches. No doctor can figure this out. Even in the tiniest dose and/or 1/2 of the tiniest doses.

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What do you take now, if you don't mind me asking?

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I Have same problem. I have allergic reactions to pork! I take 25 mcg of

Levothyronine T3 only.

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No big thing but it's liothyronine not Levo. Some pharmacist may give you T4.

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I have the same.... Also funny enough my blood pressure is dropping when I take the hormone. I have ended up three times in hospital after taking the hormone, synthetic and ndt, tried different brands, with food, no food, different time and I cannot get it right. No doctor understands it. First 2 weeks when I take it is fine and then my heart, pressure is going mad, I feel drunk and a bit psychotic on hormone. My TSH is around 4.5, ft3- 4, ft4- 14 in the morning. Feeling a bit better since I take kelp and chlorella, taking vitamins, probiotics, eating organic, no dairy, no gluten and still cannot get back to normal. Without the hormone, I am so tired, having slow heart, nails bad etc... It's a nightmare. I noticed that a good digestion is a key to feel better, as if the hormone is better utilized and goes to the cells not blood only.....

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Wiolta

Suggest you get full Thyroid and vitamin testing. Sounds like you have autoimmune thyroid disease, also called Hashimoto's

Important to test vitamin levels and thyroid antibodies

Low blood pressure suggests adrenal fatigue

Adrenal fatigue especially common with Hashimoto's.

redriverhealthandwellness.c...

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Do you get enough potassium? Levothyroxine can make the body deplete potassium, and even when your level is "in range" it can be less than optimal. Some of the symptoms can be heart palpitations and headaches, among others (muscle weakness, which can give you muscle and joint pains and constipation; fatigue; bloating; anxiety, depression; problems w memory and concentration; hign or low bp).

Lots of vegetables and fruit - tomato and beetroot juice are good sources!

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Hi my potassium is 4.1 (3.5-5.3) so that’s ok

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That's within range, but not necessarily optimal.

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Banana is good source of potassium

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Hello again Noisette

Did you manage to have a word with your doctor as discussed in your previous post some two months ago ?

Did you get a increase in Levothyroxine as we identified your conversion was low and that there was room for an increase ?

It reads as though nothing much has happened and you are continuing to spiral downwards and become more symptomatic ?

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Yes I did Spk to him and he decreased to 100/125 alternate days. I did this for cple of weeks and then increased to 125 daily

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I'm so sorry.

He's is dosing you on your TSH and not your T3 or T4 readings. This is pointless as you have had RAI and your feedback loop is broken, your TSH is not a reliable gauge, and you have Graves Disease. We can have TSI antibodies sitting on our TSH for years after RAI, your TSH may never recover and TSH is an unreliable measure of anything and in reality, we must be dosed on T3 and T4 blood test results.

I became very ill a few years ago due to exactly the same problem -

You need a dose increase up from 125 T4 - and a doctor who knows about Graves and the effects of RAI and how to treat effectively, and I'm sorry it's not this man you work for.

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Hi. I’ve been through the same with terrible joint pain and had all the same tests as you. Finally discovered that although I had gone GF it was dairy causing it. Recovered in 3 days. Good luck.

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Hi may I ask where your pain was

That's great for you

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Yes I have it and never did before. I have been told levo which is T 4 is bad and you can't loose weight on it either. This seems true in my case. My muscles in hip back and all legs are tight and sore.

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Hi Noisette 13. I had same symptoms as you & it was the Amitryptiline causing my problems. It made me cry, exaserbated my pain & made me feel just so fed up & down. Once I stoped that awful tablet, I still had aches & pains but no where near as bad & I stopped crying & could cope again. At worst, it caused me a panic attack & I am always so mentally strong so it was a massive shock. I’ve also seen many people over the years suffer the same with crying & depression due to this tablet.

Naproxen is fantastic, I take 500mg ones, not 250’s although they’re not as good as the old diclofenac’s. Hope this info helps, as there are alternatives to Amitryptiline.

Good Luck 👍

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I’ve only been on amitryptiline for a week because I found naproxen didn’t work and ankles swelled up!!!

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"The most important message is that amitriptyline probably does give really good pain relief to some people with neuropathic pain, but only a minority of them; amitriptyline will not work for most people."

I was prescribed amitriptyline for deep depressive episode after nicotine cessation. Was sleeping 12 hours a day, gaining 5 pounds a week, crying uncontrollably. Amitriptyline made me sleep 16 hours a day, gain 10 pounds a week, and did not stop the crying. Worst of all, I could feel my heart racing. When I went back to the doctor and asked to try a different drug, he told me I had to stay on it for at least 6 weeks (or was it months??) to see if it was really working. The next day, I saw a different doctor and she did what he had not. She took my pulse. She agreed with me that 120 bpm was not a healthy resting pulse.

Amitriptyline is an anticholenergic drug, which is not recommended for older folks. drugs.com/article/anticholi...

It seems weird to me that a doctor would prescribe a drug with a side effect of drowsiness to me when one of my presenting problems was sleeping too much. Also, it apparently works to relieve depressive mood by inducing cravings for sweets, which probably was the cause of doubling the rate of my weight gain.

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Totally agree👍 Lyrica would be a better choice for neuropathic pain. I’ve not known anyone speak good of Amitryptiline.

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Sorry but i'm your first one! Lyrica did nothing for me & I stopped them (i'm glad I did after that was all bad publicity about serious side effects from this drug) amitriptyline helps me relax before bed and generally have less pain than before. I agree with the conment above about Diclofenac - that helped me enormously but was withdrawn due to it's stroke side effects. I suppose we're all different but if there was one wonder drug wouldn't it be marvellous!

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Stopping smoking can cause thyroid antibodies to rise

Thyroid needs much closer monitoring for 2 years after quitting smoking

verywellhealth.com/cigarett...

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Interesting. Thanks.

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Many of us with Hashimoto's get diagnosed in the two years after stopping smoking

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I am the same! On Levo, and pain in one ankle and had high volume injection to help with the pain and now both ankles hurt. Also get pain on and off in my finger joint for no reason.

Low T3 can cause that I hve read (altho there is so much to take in I am not that well read on it all). Had T3 done and its low but within range. Not sire what’s causing mine either. X

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Low FT3 will cause symptoms and also more likely to have low vitamin levels too

Getting FULL Thyroid and vitamin testing is next step

Vast majority of UK patients forced to test privately

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Take more levo - 25-50 per day for a 4-5 days, does it get better or worse ? You can get joint pain from a lack of thyroid but also from too much. Ignore blood tests they wont help for this. This is fine tuning and you do it on symptoms.

James

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I feel your pain 😢 I have had lower body and back pain for 3 years. Last year I did see a psoriatic arthritis specialist and I finally got a diagnosis (psoriatic arthritis)....however I still hurt everyday even with meds and prior to thyroidectomy I was pain free...sad!

I still think my pains are thyroid medication induced.

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On the other hand, they can be induced by inadequate medication dosage.

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True enough, in my case I actually think I was over medicated without the usual over medicated symptoms. I switched medications a Little over a week ago I went off 2grains of armour thyroid and went on 88mcg synthyroid and 10mg cytomel and maybe it's a fluke or too early to feel the medication change but this has been they most pain free I've been in 3 yrs. I hope it last!

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Just to say im like this too so can sympathise.

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I started began to get a skin rash from my 175 mcg dose after my dose was upped.. No one could find the cause. Until I read an article (buried on the Internet) about allergic reactions to some of the dyes in the meds. If I remember correctly (as it's been awhile) my 175 dose was blue/purple. I asked my doctor to change it to a cumulative dose, with no dye, (3.5 of the 50 mcg) In 3 weeks the rash was gone, never to return. If your dosage is that color white maybe you should try going with a pure white dose. You never know, it might be the issue causing the joint pain. Additives react differently in all of us.

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All levothyroxine in the UK is white, they don't contain colouring. I've never understood why medications need to have colour added to them.

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Apparently very likely to be colored in the U.S. I just asked for a reduction in dose. My 175 mcg tablet was purple. The 150 tablet is blue. The liothyronine (Cytomel) tablets, on the other hand, are white, regardless of dose.

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Hi there, I had exactly the same. I had what I can only describe as severe joint, leg and muscle pain and weakness. That's what led me to the GP in the first place. Initially thought I must have knee injuries from exercise and so left it 2-3 months but by the time I went to the GP I was in agony. Blood tests defined a severe deficiency in vitamin D and I was given a 6-week course of vit d tabs. This helped but I was still in a lot of pain and unable to walk properly. Stairs were extremely painful walking up and down and driving at times I had to stop because the pain in my legs felt like fractures (unbelievably). After 6 weeks GP put me 50 x levothyroxine and I am a lot better now. I am not back to normal and the tabs are giving me a few side effects but I am nowhere near what I was feeling 6 months ago. I would never have thought that Thyroid (Hashimoto) would cause the problems I experienced but you live and learn. Good luck and I do hope things get a little easier for you soon.

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Hi

Iv been similar

I just thought I needed hip replacement but they say no

Pain Is still in groin but I cope better since levo

I'm hoping when t3 correct it improves

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Please check your vitamin D.

I was in horrible right hip/butt pain before diagnosed and treated for graves. My Vitamin D was extremely low and I was then prescribed 50, 000 units of D for a brief amount of time.

I feel your pain!

I also believe Grave’s Grip had me in a horrible hold. Frozen shoulders, bad hip etc....

Good luck, this is awful.... wish you better days🙏

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Hi

May I ask how you know,you have Graves?

I thought it is when very hyper not,hypo? I think I may have been hyper at start of menopause

I'm hashi and have autoimmune. Had psirosis, villigi

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Ps I've a bad hip/groin and painful left shoulder

Is shoulder connected. I thought hip was wear and tear

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Had the same here in US, Doc increased my vit D to 3000 a day feeling better but my shins hurt with too much walking and left ankle pain.increased calcium too.

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...the same what please? :)

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Painful left shoulder, ankle pain, muscle pain.

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Just a thought I’m also on estrogen only HRT tablets!!

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Himive started the gel

My I ask if you have womb as they say take progesterone too if have womb to protect lining

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No I had full hysterectomy and also ovaries removed

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Ah I'm on the gel, theynsaynitnorotects and builds bones

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Hi Noisette13, I was diagnosed with Hypothyroidism 6 years ago and after a couple of years and having the Levo increased slowly to 175mcg I started to experience joint pain in my feet, legs and back. The more Levo I took the worse my joint pain got. It got so bad that I was finally referred to an Endocrinologist who diagnosed me with Fibromyalgia. The joint pain is affecting my life so much that I now cannot walk or stand for any length of time without being in a lot of pain. I finally decided in Feb this year that I would have to stop the 175mcg Levo I was on, to see what happened and although my joint pain did improve, it didn’t disappear completely even though I stayed off the Levo for 7 months in total. I’m convinced my pain is not due to Fibromyalgia, but due to the side-effects of Levothyroxine, however, my GP and 2 Endocrinologists are adamant it can’t be the Levo. Where do we go from here, I ask myself. Does anyone have any advice please? Thanks, Kim 😒

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I have the same symptoms as you but got diagnosed with Fybromyalgia 18months before being diagnosed hashis and put on levo so it's nothing to do with levothyroxine. I cannot get rid of pain tried allsorts of drugs/injections/bowens/ acupuncture etc.I had to give up my job and social life. It's very hard to imagine living the rest if your life with this pain however I got on a local 'living well with persisting symptoms' cognitive behavioural course and that has helped me to manage my condition so feel much less down about it. Ask your GP if theres a similar scheme in your area - well worth going on xx

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Same. While on Levo if I sat down for 30 mins or so when I got up my joints were all aching and I would hobble around the house, as my hips, knees and back would be v painful. As soon as I stopped Levo the pain went away. I’m trialling Metavive III at the moment and zero joint pain or brain fog. The pain didn’t come on straight away, it seemed to kick after about 18 months, after dose hit 100g. I’m convinced it was coming off Levo that stopped it although I’m also gluten free.

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Did thespian come shortly after starting levo?

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No it’s got worse in the last 6 mths. I had X-ray and have osteoarthritis in my left knee and foot but the pain is now all on the right side and alternates between knee hips n back also groin. I also get extreybad swollen ankles but have had no answer just it cd be this or that😡

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Do you need/ take t3 just a thought

Can only help if you are low

Have you tried things like cbd oil cider vinegar, devils claw ( my brother in,aw has inflamed toes and agony when he forgets to take it)

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I’m waiting for my bloods back then finding a dr who’ll help haha

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Put your bloods on here to get forearmed 🙃

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Does x ray show wear

Might you need replacement

They try and put me off I'm quite down with it all as has slowed me considerably

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I suffered like you on Levothyroxine, I had horrible pain in my hands and feet. I was told to go to the pain clinic. After much research I started taking Desiccated pig thyroid. Within a week I felt so much better. Levothyroxine did not help me.

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Are you getting adequate magnesium?

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If you are overweight, try losing some, it could take the pressure off your joints. X

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I have all of your symptoms and have been on Levothyroxine for years - they told me I have fibromyalgia and I am on the same medication as you although I have stopped taking the Amitryptiline as I don't believe it helps. There seems to me to be a link between hypothyroid/levothyroxine and fibromyalgia?

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I agree - the amount of folk with fybro also having hypothyroid seems to be high - in fybro you can get pain/fatigue in several places often shifting places from day to day and also general fatigue in the whole body & mind - difficulty concentrating - but hypothyroid also affects every part of your body with brain fog & lethargy and I think that there is a connection going on here. What we need is the scientific community doing some research and finding a link

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To answer your question yes I have experienced joint pain. My Endo prescribed 5mg. Cytomel. I noticed a difference in less than a week. It is real, not psychological.

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Hiya I have a bad hip,which the doc said it's bursitis in which the ball joint of hip is inflamed had Steroid injection it went now it's back,also have fibromyalgia,

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I suffer from hip pain but only for a week out of every month. Not sure if it is due to thyroid problems or just hormonal. It was very painful years ago when my thyroid problem was at its worse, so not sure. I sometimes use ibrofen cream from the doctor along with Paracetamol if it's really painful, just so that I can have some sleep, pain free. Hope you get it sorted soon. X

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Iv been told a few times not to intervene with hip pain until im euthroyd as say pains then go

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I’ve got co codomal and codeine and nothing touches it🙁

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Sounds like Lyme- try to get a good Lyme test and good stool testing- Lyme can be the reason for Hypothyroidism too. Even if negative seenif you can naturally treat it with Cowden protocol and see if your pains and RA improve over time

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I am on Levothyroxine, 75mcg. Several months or so after starting levo, I had hip pain that went into my leg which also became more intense with my walking up stairs. I asked my Doctor to refer me to a chiropractor, who had x-rays done, which showed that I had an inflammation in my lower vertebrae. This was putting pressure on my nerves going down my leg. Chiropractor did heating pads on my lower back and used a stretching contraption to relieve pressure on my lower vertebrae. But most important he had me do press-ups, which are part of a McKenzie method for correcting lower back pain and sciatica. (I did have to do them religiously for about a year, and still do them on occasion to keep the pain away. But at least now I have been able to go back to doing other exercises (my tai chi, and yoga) without pain, can walk up and down stairs without pain, and can balance now on either leg. I'm wondering if this could be your problem. Check out the variety of information connected to the Robin McKenzie press-ups at: search.aol.com/aol/search;_...

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Hi Noisette13

Read "I got my energy back and got rid of all the symptoms..." on my profile - maybe you can find an answer there!

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Just been seeing Seaside Susies reply to you...she mentioned Mannitol, during my worst spell of rejecting medications, I tried out Mannitol in my regime, it gave me a big problem. But due to many allergies to different fillers, (common when you have an auto immune problem) I also ended up having to stop taking Levo. I now use WP thyroid which has no fillers and it really seems to have made a huge difference. Hope you can establish a pattern. Good luck.

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I’d just like to say thank you to everyone who have taken the time to respond. I was beginning to feel it was just old age or I don’t know what. We have a cple of new young drs started at our practice I’m going to see which one wd like a challenge and maybe in the end be able to help other patients that are getting fobbed off. I have also sent an email to the shared care endo dept. It will be interesting to see what they come back with

Again thank you and I will keep you informed if I have any luck!!!

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This thread is very interesting.

I have had significant issues with both hips being very painful for many years. I also have shoulder issues, especially the left one. I get jaw pain (left sided) often. I also get low back pain. I have severe fatigue and low energy levels - and subsequent cognitive issues (brain fog).

I have (months ago) been started on Levothyroxine (Acitivs) at 50mcg. The practitioner was going on symptoms as well as results. She was going to wait six weeks then check bloods and symptoms again etc etc till I got some improvements. She is no longer at the surgery and my GP is not at all knowledgeable about thyroid or managing it. She said I was now normal (TSH 1.1) and we could check bloods in a year - no interest in symptoms at all.

I am currently referred to rheumatologist for severe flare ups of hip pain (and other pains) both hips flare at same time. I'm stiff for ages in mornings. I'm in pain and stiff if I sit too long and gentle (small amount) of walking can ease initially but can quickly worsen the pain, which can trigger a flare.

I also get bloating and water retention.

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That sounds so familiar!! I also limp too

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Yes, I can limp at times - but I try to hide it. It's frustrating that the health profession seem oblivious to these symptoms and how they can be related to the thyroid or the treatment for thyroid. I mean, what is one supposed to do - just have all of this horrid pain indefinitely?

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😢 I’m determined to find the reason x

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I had very bad side effects with Teva. It must be cheap as always get it and have to request replacement, despite it being on notes! Terrible cluster headaches and felt very unwell.

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Had up to date results TSH 0.17(.30-5.0) and ft4 16(9.00-25.0) t3 4.10(3.50-6.50). All within range and to continue on meds 125mg!!!!

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Hello Noisette

How long had you been on 125 Levothyroxine before you had this last blood test ?

How do you feel ?

Your T4 is now 7 points into a range of 16 so that's just under 50% through the range -

Your T3 is now 0.6 into the range of 30 points so that's 20% through the range -

There is still room to increase your Levothyroxine -

Are you due back in another 6 weeks time to retest your thyroid function, and how are your vitamins and minerals, they need to be optimal for the conversion of any thyroid hormone replacement to work.

The TSH is of no value, you have Graves and have had RAI and your feedback loop broken: this TSH of 0.17 has no relevance.

Personally, the disparity between the two hormones is quite wide, and ultimately I think to return to some QOL you may need to introduce some T3 or switch to Natural Desiccated Thyroid.

I doubt many people will find this newer post - you had so many replies, up above, why not start a new post with this post from 2 days ago, and see what the 93 have to say about your newest blood tests.

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Thank you I’ve been on 125 since April this year. My dr tried to make me change in May to 125 for 4 days and 100 for 3 I didn’t get on with this so reverted to 125 again.

I’ll start a new thread ....

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