Aches and pains. : Hi, I've been diagnosed with... - Thyroid UK

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Aches and pains.

Flyergirl profile image
27 Replies

Hi, I've been diagnosed with underactive thyroid and am now taking 75g of Levo. I'm now suffering from horrible joint pains in my fingers on both hands, some shoulder pain, and problems just in my left leg, hip, knee, tendinitis on my Achilles and swelling of my ankle. My right foot only has heel pain. The symptoms get worse closer to my monthly cycle too.

I didn't feel this bad when I was on 50g of Levo but I needed to have my meds increased to 75g. The 25g tablet I'm taking looks like a different brand, could this be the problem?

I've also cut gluten from my diet 99% of the time ( gotta love a choc digestive!!) I've just started taking cod liver oil when I go to bed. Should I try anything else ?

My left leg worries me because it feels like it's sluggish, that's the only way I can describe it. I'm new to all of this and only was diagnosed because I just couldn't loose weight even after exercising like crazy and having a controlled diet.

I defo feel worse on the increased dose even though the blood test result show my levels are where they should be.

Any advice would really be appreciated. X

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Flyergirl profile image
Flyergirl
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27 Replies
galathea profile image
galathea

Hi, Different brands can wreak absolute havoc... Suggest you try using 1 and a half tablets of your original brand, and see if it makes a difference... If it does, you will need to explain to your doc and get a further prescription as up will runout sooner.

Cut them with a pull cutter or I just bite 'em. :-)

Some brands have acacia in them which seems to be a bit of a problem for some people, whilst others have lactose.

Once you get on with a brand... Sick with it. ....

Xx. G

dgleds profile image
dgleds

maybe get them to check you for other autoimmune things, just incase...Get your ANA tested and all things they do along with that...

Natalie286 profile image
Natalie286

I started treatment 4 months ago for hypothyroidism and doc initially put me on levothyroxin - bad news for my joints! I was in agony- even waking at night in pain? I switched to armour privately and what a difference

Starfish123 profile image
Starfish123

Hi,

Have you had you vit d3 checked? Mine was only 12 and I was experiencing lots of achy sore bones etc. One of the known indications of vid d deficiency is heel pain, plantar fasciitis. You could ask to get it checked of just supplement yourself. The first thing that went away with supplements was the heel pain.

As has been mentioned stick with the same brand of Levo, not only do they have different ingredients they have different strengths. I had Mercury pharma first and really noticed the difference when I was changed to activis. I was very achy, lots of headaches, not pleasent. I'd already used up my Mercury pharma adjusting to the new dose so I knew it was not the increase. It was then I found Mercury pharma has 28mg in each table but states 25mg, most other tablets are 25mg. I therefore had been used to a higher dose and was then given a lower dose.

I spoke with my dispencery and they suggested to get Mercury pharma I get the prescripion in 25mg tablets so at that time it was 3x25mg for my 75mg dose. So far it's worked, only ever been dispensed Mercury pharma that way.

I hop it helps.

Stourie profile image
Stourie

Hi Flyergirl what are you blood results?

Flyergirl profile image
Flyergirl in reply to Stourie

Hmm. To be honest I I'm not 100% sure

Stourie profile image
Stourie in reply to Flyergirl

When you are back at your dr ask him for a copy of your blood results with the reference ranges. He cannot refuse you. Freedom of Information

Guillemette profile image
Guillemette

I know where you are coming from, I have all this. I have had physio for six weeks and now a referral to a musculoskeletal specialist. It could be thyroid related but I don't seem to be able to get a medic to even consider it. I am in despair to be honest and finding it very hard not to just give up. Keep trying and hope that someone might take notice.

Rudegirl profile image
Rudegirl

Hi I'm was diagnosed in April this year, I'm also on 75mg & suffering exactly the same symptoms as u are!

Flyergirl profile image
Flyergirl

It helps to know you're not going mad and others are suffering similar symptoms. I'm now putting this down to the 25g tablet as the brand is different and the joint pains have become much worse since the introduction of this tablet. back to docs for me.

MidnightBlue profile image
MidnightBlue

If you are trialling being gluten free, unfortunately 99% of the time is not enough. I read it's like being pregnant, you can't be a little bit pregnant, it's all or nothing. You really need to be completely gluten free to see the benefits. If your body is reacting to gluten then it will react to any gluten you eat.

Flyergirl profile image
Flyergirl in reply to MidnightBlue

I know that

NadeNud profile image
NadeNud in reply to Flyergirl

You can get chocolate covered g/f biscuits from most supermarkets which are pretty good...:)

Anyone suffering from joint pain, especially if it is bilateral and in hands and wrists, should ask their gp to take their bloods for inflammation and autoantibodies including rheumatoid factor.

I agree about checking the vitamin D too but inflammatory (autoimmune) arthritis such as Lupus, Sjogrens and RA, should all be excluded as well - and this requires being referred to a rheumatologist. I am concerned when people think that widespread joint pain and stiffness could be caused by a brand Levothyroxine alone and don't push for further tests or referral. A good GP will always check for inflammation and refer when joints are affected because these diseases are serious and RA can do damage very early on if not diagnosed and treated soon enough.

Flyergirl profile image
Flyergirl

My doc said that the blood tests didn't flag up any rheumatoid factors but I'll ask again and ask if it could be any other autoimmune issues. All this is great advice and much appreciated.

MariLiz profile image
MariLiz

Hi Flyergirl,

Might be worth getting a blood test for B12? I was on thyroid medication for about six years before I began to get the symptoms you describe. When my GP eventually tested for B12 it was very low. Thyroid and low B12 often go hand in hand as autoimmune diseases. Fibromyalgia is also worth looking at, I've been told I've got that too! Lot's of members on here suggest supplementing your diet with vitamins, and I've been trying a calcium,magnesium,vitD3, tablet at night. I'm certain it is helping with the pain in the mornings. My hubby tells me I'm not moaning about it as much, so that's good!

Good luck with everything MariLiz

nanaj profile image
nanaj

I too have all the symptoms like you but I am not on any meds, my thyroid tests came back as 1.3 [Normal] feeling so tired and anxious! My mum had an underactive thyroid and my sister has thyroid problems. I am 64 yrs old and feel a lot older some days.

Starfish123 profile image
Starfish123 in reply to nanaj

Hi,

Get your thyroid antibodies tested if you know it's in the family. Ask to get all tested as they usually only test TPO, the reason is 99% of people with antibodies have this one. I had to wait over 20 years since I first had symptoms to get it tested and then I had a confirmed diagnosis. If your Dr will not test you can ask for a referral to an Endo. I made a full list of signs and symptoms after blood tests said I was borderline, that's how I got my referral. It was the Endo that did the tests, up until that point I'd never heard of antibodies.

I hope it helps

nanaj profile image
nanaj in reply to Starfish123

Thank you for the advice Starfish 123, I will make an appointment to see my GP, it is good to tell someone who understands how I feel, x

carolinep profile image
carolinep

Hi, I was diagnosed 3 years ago, and given Actavis and Almus (same thing, different name) which crippled me, I was completely disabled with joint/muscle pain and the tendons on the back of my feet. I changed to Eltroxin which was so much better but no longer available. I am on Mercury Pharma which is not as good as Eltroxin, but better than some brands. I also suffer with pains in my fingers/toes and pain on the ball of my foot and the heel. Suggest you try Mercury Pharma or Wockhardt - I am so sensitive that even different batches of the same brand cause me other side effects. I would advise that you change over very slowly though, if you are experiencing problems, I don't think your body will appreciate a rapid change, mine never does.

Starfish123 profile image
Starfish123 in reply to carolinep

Hi

Mercury pharma made eltroxin and their own brand, they only made one tablet but sold in two different forms. If eltroxin is no longer available then mercury pharma is the same.

You might need a higher dose?

Hope it helps

Flyergirl profile image
Flyergirl

I'm on 50g of alumus and 25g of mercuryPharma. It was the intro to mercuryPharma that caused the symptoms I've described. So I'm guessing that brand doesn't suit. This is defo ever moving goal posts!!!!

in reply to Flyergirl

Are Almus and Mercury Pharma different brands ? If so I was told that you shouldn't mix brands.When being given a prescription at my hospital pharmacy last year they had to change them,giving me all 50mcgs tabs and I had to get a pill cutter in order to take 75mcgs a day.It was then that I changed to Actavis.

They try to mix them because not all brands are supplied in 25mcgs but it is wrong to do so.

However,I'm not happy on any Levothyroxine T4 and have suffered joint pain over many years.

Just had my first appointment for knee trouble with a Physio and can sense that she doesn't seem interested in any thyroid connection.

Will see what happens when I get my 1st appointment for my exercises.

I can sympathise with everyone here who is suffering .......it destroys you..

hairyfairy profile image
hairyfairy

I`ve read a number of times that the curry spice circumin is good for joint pains, because it has strong anti-inflammatory action, & no side effects. it`s worth a try.

milupa profile image
milupa in reply to hairyfairy

hairyfairy - I have also come across this info and started taking curcumin with coconut oil twice a day with my main meals five weeks ago. It had a small but definite effect on my inflammatory symptoms (especially when veering off the autoimmune protocol) but the greatest impact is on my blood glucose; no more extreme spikes and the related low drops. Recommended.

ladylefty45 profile image
ladylefty45

I to have a underactive thyroid. Have been on meds for over 40 years. In the last year I have changed doseages to many times. I am on 75mg now and do fine on that. When my meds are upped I feel like I got run over by a mac truck. Was waking up staring at the walls and couldn't go back to sleep....Very tired and have no energy. I have the pains in my shoulder,left leg and hip> I am also gluten intolerant . I have my levels checked every 4-6 weeks and they always come back low. For me there is no dosage in between 75 and 88 so I pretty much stay on the 75.....Not sure what type of dr you see but my suggestion to you would be to see a dr that specializes in thyroid and get a 2nd opinion. I am waiting now to get in to one but have to wait until January before I can get in.

Flyergirl profile image
Flyergirl

Well I've now been on just on brand of medication since taking advise from posters and I can't believe the difference. Virtually all joint pain gone from my hands and other areas. So pleased and such a quick reaction. Well done you lovely people x ☺️

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