Aches and pains on t3: Hi All, I'm back again, I... - Thyroid UK

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Aches and pains on t3

misschris profile image
18 Replies

Hi All,

I'm back again, I have been taking 100mcg and 10mcg of T3 for over a week and no changes to my symptoms, I upped my T3 to 20mcg a day 10 in morning and 10 late afternoon and since doing that my aches and pains have took on a new level, I struggle climbing the stairs, sitting down, getting back up, the whole of my back aches and in bed my whole body hurts, my hips hurt and am tossing and turning all night because of the pain, my legs feel stiff and are weak and struggle getting in and out of car. I feel really miserable and have took time off work, I feel like I've seized up.

I am taking zinc, folic acid as my doc said I was low in these. I also take 500mcg of b12 cos my reading was 319 but nothing seems to be making any of my symptoms better.

Can the aches and pains be down to taking T3 meds? Just want to feel well.

Chris

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18 Replies
Marz profile image
Marz

Not sure of the source of your pains. It is early days for the T3 to be displaying improved symptoms - we are all so individual.

How are your VitD levels ? Also do you have any blood test results with ranges - for your thyroid ?

misschris profile image
misschris in reply to Marz

Hi Marz,

I don't have any recent blood tests, in fact I will be going back to see my GP and will ask him to write them down with ref ranges.

I haven't had my VitD checked I could ask him to check that, they wouldn't check my b12 again because I only had them done 12 months ago.

Marz profile image
Marz in reply to misschris

City Assays in Birmingham can send you a Home Testing Kit for VitD - think its around 28 GBP's. Website of the same name. Once supplementing B12 further testing often throws up skewed results. Best to keep on supplementing to keep levels good - you cannot overdose as excess is excreted ....

You are legally entitiled to have copies of all your test results. Some surgeries now have your records on-line - so perhaps ask ...

SeasideSusie profile image
SeasideSusieRemembering

misschris 500mcg B12? Is that correct or a typo and you mean 5000mcg? With a B12 level of 319 the forum would recommend taking Solgar sublingual methylcobalamin lozenges 5000mcg to start then 1000mcg later as a maintenance dose. Plus a B Complex to balance the B vits.

You've increased T3 very quickly. Normally it would be 5mcg for a couple weeks then increase to 10mcg, hold for 6 weeks before adding another 5 mcg etc.

Vit D and Ferritin are also important.

Ask for a print out of your results, that way you will get the reference ranges as well, your GP might not write those down.

misschris profile image
misschris

Hi SeasideSusie,

I do have Solgar sublingual 1000MCG and use pill cutter and take 500MCG because I was scared that I might be taking too much, as for the T3 I have only just upped it so I could just go back to the 10mcg a day and up it as recommended.

I did look at the B Complex but that too had b12 in it so did not bother purchasing it, am I okay to take the solgar b12 and b complex?

SeasideSusie profile image
SeasideSusieRemembering in reply to misschris

misschris For a member to be notified of a reply, you need to put your response in their message box by clicking on the green Reply button directly under their message, or put @ directly in front of their name (no space) and click on their name from the list of suggestions that pop up, it then highlights it in blue and sends an alert to tell the member they've been mentioned :)

You won't raise your B12 level of 319 with just 500mcg methylcobalamin. You really need to take 5000mcg to start and when you've finished that bottle (60 lozenges) reduce to the 1000mcg dose for maintenance. You can't overdose on B12 as excess will be excreted.

B12 is best absorbed sublingually so whatever is in a B Complex isn't likely to be as well absorbed anyway, so you can take the B12 and a B Complex, it's what is normally advised on the forum.

misschris profile image
misschris in reply to SeasideSusie

SeasideSusie

Hope Ive replied correctly this time. 😉 I will order more b12 and B Complex.

I have just phoned my GP and patients don't have online access to see medical records and only online access you have is to see how many prescriptions you have had and to order medication, they charge £10 for a print off of your blood results. I keep saying I need to change doctors. I am off sick for 3 weeks so I think it will be the ideal opportunity to do this.

SeasideSusie profile image
SeasideSusieRemembering in reply to misschris

misschris Yes- two notifications received :)

What rob dogs your surgery are.

BMA Fees for access to medical records - bma.org.uk/advice/employmen... :

"Access and copying fees for Health records held on computer £10.00" (that would be for a copy of ALL that is held on computer, and that could be very interesting!!!)

****

"Please note what you can and cannot charge:

For supplying copy, a fee not exceeding the cost of making the copy and postal costs may be charged.

Charges should be proportionate and justifiable and should reflect the actual costs incurred. They should not result in a profit for the data controller."

So they're not supposed to make a profit. A small charge for paper and ink is reasonable.

****

So you play them at their own game. Either go to the surgery and ask them to give you the results verbally, write them down and make sure you get the reference ranges. Or ask them to show you the screen if they haven't got time to tell you what they are.

I am very lucky, it's the one (and only) thing my surgery is good at. I asked yesterday for a copy of a letter from a consultant I saw a month ago, and a copy of a CT scan report from October. I got them immediately with no charge, and I said I'd be back next week for a print out of the results for the blood test I'd just had taken. There is never any question.

misschris profile image
misschris in reply to SeasideSusie

SeasideSusie

I work in social care and accompany tenants on their medical appointments, each and every time that I have requested a print out, it has always been given without any hesitation. I mentioned that to my surgery receptionist and you can tell that they think it's wrong but they are governed by the Surgery rules.

They defo are rob dogs, defo got to change GP's.

winjy profile image
winjy

Why not reduce T3 to the previous level to see if the new symptoms are reduced or corrected?

misschris profile image
misschris in reply to winjy

I am taking 10mcg T3 and 100mcg Levo a day and my aches and pains especially in my legs, back and arms have gotten worse. My legs are not working properly and have trouble walking, the more I walk the more they hurt, even my hips get aches when am walking and sleeping.

I am going to see my GP today about this because I've never had this where it is effecting my daily life, it's hard to get in and out of bed, a car, walk the shops, sit and stand.

I thought I should up the T3 but I've only had this since been taking T3 so I suppose it might be worth reducing to 5mcg T3 a day.

winjy profile image
winjy in reply to misschris

I believe you. As I also experienced side effect from T3.

I think I had T3 of 10mcg before and I got more stiffness and my pressure increased.

My blood pressure increased and blood constricted (bad blood circulation) and beats. It got more serious when I wan on Levo 3 years and have been on more than 5 years since I got my thyroid gland removed due to cancer.

So I quit it for 3 weeks recently, and felt no menstrual pain, during the period and had less sweating and breathing problem as well as heart beats but I feel severe hypothyroidism so I started levo again. This time Levo with T3 20mcg. On the first day of resume, I felt all blood vessels constricted (pressed)and beats fast & strong, reducing blood flow, especially my arms & leg and my head including bronchus(I have asthma). That was why I got stiffness and got my arms& legs asleep and nerve pain due to weaken nerves (I was informed bad blood circulation makes nerves weak) When I lie down I felt like my blood on my hand constricted like exploding. Heart beat increased and hard to breath due to stiff bronchus.

I for sure realize the reason I felt sick on levo so far. I also have side effect from synthetic T3. When constricted blood caused bad blood circulation and nerve weakness and sensitivity as well as stiffness causing pains.

So I better try NDT.

My doctors did not agree side effect of levo and just say too much levo cause hyperthyroidism but I now get very sensitive ad I get more hypothyroidism and feel levo is the problem. I don't know why they do not listen to patients and insist that there is no problem with levo. Most doctor say it seems to be depression, but it was not. Maybe anxiety like symptom but not mental problem nor depression as the medicine did not work for me at all (I tried many medicine over the last 2 years from psychiatrist and suffered from serious side effect and almost died or hospitalized due to pass out)

I tried a few other levo's so it is not the filer problem but levo itself.

When dosage is low or your are healthy side effect is less but I am very weak now after 5 years of levo and can feel it more. Also side effect is developed as time passes.

After all the treatment I failed and came to the conclusion of levo is the problem for me.

Levo seems to contract blood as mentioned on some program (Levothyroxine therapy and impaired clearance are the strongest contributors to small intestinal bacterial overgrowth: as levo constrict & suppress pancreas and gut bladder to produce digestive fluid.)

There is not much option for NDT for me. So I have a big problem.

The thing is even the right dosage of levo, you will feel pain as it is not the matter of dosage. I was advised similar symptoms from a lot of patients.

When you quit levo, symptoms will be lessened or removed. Then try NDT or other brand.

misschris profile image
misschris in reply to winjy

winjy

I feel for you, nothing worse than feeling bad and no one is listening. The worse thing they done was give someone the responsibility of making up reference ranges because those doctors are sure holding onto them and when you go to the docs with all the symptoms and your in range, it's game over!

I went yesterday he is doing bloods for Vit-D B-12 full blood count and rheumatoid arthritis.

He didn't think it was anything to do with the meds but I beg to differ.

I personally think me and Levo don't get on and at the time I didn't realise I was doing better on Armour but my BP increased and was sweating, so I asked my Endo if I could have combo of t4 and Armour, I haven't been the same since. I do have some Armour left might just put myself back on them and see how I go, just don't want to have to take BP meds if it rises again.

T3Dan profile image
T3Dan

Did you ever resolve this?! I have these exact same problems on T3 and NDT. The more I raise the worse it gets.

misschris profile image
misschris in reply to T3Dan

Hi Dan,

What it turned out to be was a condition called Polymialgia, before I was diagnosed I stopped the T3 as I thought it was this causing the aches and pains, I ended up on Steroids for nearly two years and never tried the T3 since but I do think about trying it again as I still have some hypo symptoms.

Hope you can sort yours out, might be a matter of tweaking your meds, as with most new meds it's trial and error 🤷‍♀️

T3Dan profile image
T3Dan in reply to misschris

Do they treat the Polymialgia and is that successful?! It seems to me whenever I add T3 I get worse - the aches and heaviness in my legs become more and more unbearable - though they are always a little present.

misschris profile image
misschris in reply to T3Dan

I was treated for Polymialgia and aches and pains went once the steroids were in my system but I had a flare up this year and back on the steroids, just weaning off them now.

If you didn’t have these aches and pains before taking T3 could it be that you are taking too much?

I think some people split it through out the day, if that’s not what you do maybe you could try splitting it.

There will be other posters on here who have much more knowledge on T3 who can give you sound advise.

susiebow profile image
susiebow

I am on t3 trial and started adding 10 mcg t3 ,then went up to 15 mcg and got severe pain and stiffness,chest pain.I went back down to 10 and pain and stiffness improved.

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