Back pain from Levo.

[Kathleen-1]

I have found that Levothyroxine gives me pain across the small of my back. When I stop T4 the pain stops. I am on mono T3 which is fine but have been trying to add back in a small dose of T4.

[greygoose]

You might never succeed - I never did!

[Kathleen-1 in reply to greygoose]

what do you mean Greygoose? I have been quite good on T3 alone for ten years or so but now trying to add a little T4 back in on advice of Endocrinologist.

[greygoose in reply to Kathleen-1]

I dare say the endo does 'advise' it. But he doesn't live in your body. He doesn't know how you feel when taking levo.

I tried all sorts of combinations but ended up on T3 only because I just couldn't tolerate T4. Didn't matter if it was synthetic or in NDT, it just made me ill. I've been on T3 mono-therapy for over ten years - it gave me back my life - and several times I tried to reintroduce levo into my dose. But, it never works, and I'm always relieved to stop it again. If levo gave you back ache before, there's no reason to think it won't again. Some people just can't tolerate T4, that's all. I just wanted you to be aware of that.

[Kathleen-1 in reply to greygoose]

thank you very much Greygoose.

[greygoose in reply to Kathleen-1]

You're welcome.

[Meerkat1234 in reply to greygoose]

hi grey goose. I am having real trouble with levothyroxine.Would you mind telling me what happened with you and the drug. I don’t understand about the FT3. Thanks

[greygoose in reply to Meerkat1234]

Well, when I was first diagnosed, the only symptom I was aware of was not being able to lose weight. I was started on levo and not only did my weight increase, when the endo had assured me I would start to lose it (!) but I quickly developed a whole heap of other typical hypo symptoms. And, I just generally felt ill. I was told that would improve as the dose increased I got up to 200 mcg, over several years, and still felt the same.

I managed to find an endo that put me on euthyral: 100 mcg T4 + 20 mcg T3. And did feel a bit better, but not a lot.

Now, I'm on T3 only, and keep trying to add in a little levo but the result is always the same: I just feel generally ill, and feel better when I give it up again. And, now, I've decided I shan't try again because it just isn't worth it because I don't think it's ever going to work for me.

And, this has nothing to do with the brand, because I've tried several different brands; nor nutrient levels, because they're all good; nor cortisol because that's good, too. It's just the T4 itself I cannot tolerate.

What don't you understand about the T3?

[Meerkat1234 in reply to greygoose]

Thank you for your detailed reply. I have read mostly on here that the doctors don’t want to prescribe T3 so is it only an endocrinologist that will give it. The people on here only seem to feel better once they take it so what is the point of taking all that levothyroxine with its horrible side effects. Have you heard of hypothyroidism causing abscesses. They said mine was healed but it is hurting and gone red again. Also had a blood test and had to go back again because they said there was an analysis failure whatever that is. Also my red blood platelets are too large which can be a thing called macrocytic anaemia and blood tests can fail because of this or cancer so I am really worried. I feel very depressed and really weak and just laying in bed downstairs as I am too weak to go upstairs. Sorry to be so miserable grey goose but I am getting nowhere fast.

[greygoose in reply to Meerkat1234]

I can't reply to all your questions, I'm afraid, so it would be better if you put all this in your own new thread so that those that can reply will reply - doubtful that many people will see this on this thread. Besides, it's not fair to hijack Kathleen-1.

I will just say that I don't live in the UK, I live in France and the system is different here. My T3 was prescribed by a GP, but in the UK you need to see and endo to get started on it.

Levo doesn't necessarily have side-effects. Plenty of people do very well on T4 mono-therapy. But, we're all different, and what is sad is that doctors think it's ok to treat us all the same. In any country, I believe, if we want something different, we have to fight for it.

[Meerkat1234 in reply to greygoose]

what do you mean I have hijacked Kathleen. I only said that I was suffering back pain too

[greygoose in reply to Meerkat1234]

I mean the questions you've been asking me which are not necessarily relevant to Kathleen's case. But, she will be notified of them, anyway. And that can be confusing. Of course, I should have said Kathleen's thread. Not Kathleen herself! 🤣

[Meerkat1234 in reply to greygoose]

hello grey goose. I am sorry if I interrupted your conversation with Kathleen’s thread whatever that means! I am new to this and am obviously making mistakes. I am sorry about all the questions. I know you can’t answer them. I didn’t realise you lived in France and the medical rules are different to here in the United Kingdom. Once again I shouldn’t have asked all that and wouldn’t have done if I knew you lived in France.

[greygoose in reply to Meerkat1234]

No apology needed.

Living in France doesn't affect my basic knowledge of thyroid, but I'm not well-up on the NHS. All thyroids are more or less the same no matter what the nationality.

A 'thread' is what we call a question posted by someone, followed by a string of replies. It's helpful to the OP (Original Poster) if we can keep their thread concentrated on the question they asked, without diversion. You can ask any questions you like in your own thread, just click on the 'Write' button at the top of the page. Doubtless someone will be able to answer them, we all have different experiences and therefore different aquired knowledge bases. But, health systems do vary from country to country - although that doesn't necessarily mean that any one country is better at treating thyroid than the others, I'm afraid!

Hope you will post your own questions soon in a new thread. x

[Meerkat1234 in reply to greygoose]

Morning grey goose.Thank you for your reply and explaining what to do on the forum. I am waiting for my latest blood tests to come back, then I will do a new post so everyone can see it. It is very kind of you to reply. I don’t know how our NHS works either, I don’t think it does work. 😂. Have a good day and take care. 😊

[greygoose in reply to Meerkat1234]

Thank you. I look forward to reading your post.

[Meerkat1234 in reply to greygoose]

The blood tests are taking longer because some couldn’t be tested so I had to go back yesterday and have them done again, I don’t know why nor did they. Thanks for your understanding. I told you I was the master of confusion. 🤣Have a good day grey goose and take care.😊

[greygoose in reply to Meerkat1234]

Thank you. You too, Meerkat.

[Meerkat1234 in reply to greygoose]

Thank you for your patience greygoose 🙂

[greygoose in reply to Meerkat1234]

You're very welcome.

[Kathleen-1 in reply to Meerkat1234]

hi Meerkat1234, Don’t worry about it being my thread. I asked a question and got two replies - you and Greygoose. After that you asked Greygoose a lot of questions and she answered a few of them. If you want to talk with Greygoose then start another question yourself and then you will get replies directed to you. Good luck in your quest. Kathleen.

[Meerkat1234 in reply to Kathleen-1]

Thanks Kathleen-1 for replying to me. I didn’t mean to upset anyone. I hope your back pain is not too bad. I really appreciate you answering as I was upset. Sorry if I interrupted your conversation. I am new to the forum and don’t understand a lot of the protocol. You are very kind for answering. Take care of yourself. 😊

[Imaaan in reply to Meerkat1234]

There is a learning curve to everything in life so dont sweat it. You'll get the hang of things on here in no time and you'll become a pro 💛

I've been here a few yrs and sort of hijacked a thread today . We're human, faults and all.

[Meerkat1234 in reply to Imaaan]

Thanks Imaaan for your reply. I am not sure how to work things yet. It is difficult for me to know when to say anything because of my Autism/ADHD. My husband is always complaining that I interrupt him before he has finished speaking so it is not a surprise that I am doing it on here. You are very nice 😊 to reply to me this morning Imaaan and I really appreciate it. 🙏. It has made me feel better about using the forum. Thanks and take care of yourself. 😊

[Imaaan in reply to Meerkat1234]

I saw your profile and that's why I decided to reply to you as a form of reassurance. I think you're handling yourself pretty well and pls dont let your diagnosis hold you back from communicating on the forum or out in real world.

[Meerkat1234 in reply to Imaaan]

Thank you so much for sending me your kind reassurance. My conditions make it difficult to know what to say. I have just seen the doctor about my groin abscess which the nurse told me had healed and gone but it hasn’t and I am now on strong antibiotics.They made me so sick last time but I have got a different antibiotic and anti sickness drugs. Also going up the levothyroxine. Reassurance and kindness mean so much to me because with Autism and ADHD it’s sadly lacking. I really appreciate it Imaaan. Take care of yourself, you have a big heart 💜🙏

[Meerkat1234]

I have been 2 days going up to 37.5 mg of levothyroxine and I have got the same as you, a pain in the small of my pain.

[Meerkat1234 in reply to Meerkat1234]

sorry meant pain in the small of my back

[Kathleen-1]

that is interesting, Thank you for replying.

[FancyPants54 in reply to Kathleen-1]

Hi

This back pain; does it come on fast if you try to do anything strenuous like vacuuming, any kind of light gardening, bending down, changing the bed etc? Can it be overwhelming but goes away immediately you sit down? Did you ever feel as if your spine was unstable and that you could not find a way to stand up straight without having to concentrate?

Because I've had that for years and I've been on levo for years but didn't think the Levo might be the cause. I blamed the hypothyroidism. But seeing you posting about this has made me realise that I have not had this back pain at all since I started NDT in December and stopped Levo! Yesterday I began adding in a tiny bit of Levo to the NDT to make the T4/T3 ratio more like a human ratio rather than a pig ratio. I will keep my attention alert and see if the pain returns.

[Kathleen-1 in reply to FancyPants54]

Thank you Fancipants, I am not nearly so active as you! However your description fits the bill! Just try to stand up from sitting is incredibly difficult and makes me yell! I really believe that it is the T4 so I may well cease even the tiny bit that I am now ..taking but b

[Imaaan]

Have you tried beef thyroid glandulars? Maybe you would get on with them instead of the levo. I've used and liked the brand Ancestral Beef Thyroid. Also, I know another member on here using Metavive.

[Kathleen-1 in reply to Imaaan]

I guess that comment is to me Imaan. No, I don’t know anything about Ancestral or Metavive. I have been several years successful on T3 alone, so may go back to that. At the moment I am trying 12 1/2 mcgms of T4 a day to see if I can tolerate that. Kathleen.

[Imaaan in reply to Kathleen-1]

Hi

Yes it was for you. Since you mentioned you were struggling with adding back the small dose of synthetic t4, I thought to mention beef glandular to you. Maybe your body would better absorb and handle it.

I purchased Ancestral beef thyroid after my doctor refused to renew my prescription T4 when my TSH went below range on NDT and synthetic t4. I was on 135mg of NDT and either 12.5 T4 or 6.25T4. I cant recall.

Ended up getting the Ancestral Beef Thyroid and took it with my Erfa and it kept my free t4 exactly the same as when I was on ndt and t4. So it worked in keeping my hormones the same.

[Josephineinamachine]

hi this is interesting this back pain thing… I remember when I started Levo I had a sharp pain like someone digging a knitting needle in behind my left shoulder blade. It would go after a few days but then returned with another increase. I don’t have it now I’m settled on Levo but it was a very noticeable pain on dose increase… strange it causes back pain. I hope you find something which works for you x

[Kathleen-1 in reply to Josephineinamachine]

thank you Josephine, it is good to find others with similar symptoms that are not usually talked about.

[Soof007]

Hi Kathleen, I have the same, this pain is where the adrenal glands are. Why are you adding t4 back in?

[Kathleen-1 in reply to Soof007]

because the endocrinologist insisted! I was willing to give it a trey! But!