Just a heads up folks, this is going to be a long post!
I have been off thyroxine for just over a year now, I will attempt to explain in a long winded way how this came about. I was put on thyroxine when I went into menopause which happened before I was 50 (I am now 62). I have always been on 50mg, this has never changed, always told 'within range'. I don't even really understand about the thyroid. You guys know so much. When you talk about something simple like T3 and T4 it goes straight over my head. Anyhow I have complained on this site before that I seemed to be ok when I found a brand of tablet that suited me & tried to stick with it like many of you have complained about particularly Teva because of the Mannitol content. My problem (or so I thought) was when they rebranded then I started with the problems I have now, namely numb feet (just the top of the foot down to just below big toe joint) and discomfort in the hip area. My last experience of rebranding was I had been absolutely fine on Actavis, no symptoms then they rebranded as Accord and the same symptoms started again. The first time this happened which is a good few years ago, I ended up having a disagreement with a pharmacist about my numb feet, he told me I should get checked for diabetes (which I had been).
In November of last year I started with a red non-itchy rash which became quite extensive right across my abdomen & it didn't seem to be going away. I had been on the newly rebranded Accord tablets for quite a while because there didn't seem to be any alternatives (had already had experience with Mercury Pharma, Teva & Wockhardt) so I was just putting up with the symptoms. However when the rash appeared I decided to make an appointment at my surgery. I saw a 'nurse practitioner' (you never get to see a doctor at our £7 million newly built surgery) . She said she was usually quite good on diagnosing rashes/skin conditions. However mine flummoxed her & she brought in a GP for a second opinion (the first one I'd seen in 3 years). He also seemed nonplussed. I happened to mention the rebranding of my thyroid tablet wondering if the rash was an allergic reaction. Told him of the problems I'd had before with rebranding & I got a wry little look from him like I'd just dropped off another planet. He then suggested 'why don't you try coming off it'. He said because I was put on it at the time of my menopause that my hormones would have been all over the place anyway and I might not have needed to have been put on it in the first place. Then he started on my water tablet. 'Why don't you come off that, all they do is make you pee'. It felt like they were on a mission to cut patient's meds. My husband had the same experience with his pain meds with another GP. I said I would try coming off the thyroxine after asking the GP twice if it was safe for me to do so. The nurse immediately removed it from my medication details. Anyway to try to cut a very long story short, the nurse arranged for me to see a physiotherapist for my numb feet & a dermatologist for my rash. Both were private companies, no more NHS. The physiotherapist performed quite a lot of reflex tests. Everything was ok as I thought it would be (my feet are not totally numb I still have feeling in them). She sent me for a nerve conductivity test to rule anything out - this also turned out to be ok. Surgery never got back to me on that one. I went for my dematology appointment. They said they would need to take a skin biopsy to determine what the rash was. The diagnosis finally came back and it was Granuloma Annaulare. I have read up on this, the condition can last for up to 2 years and it has been suggested that it can be linked to diabetes & thyriod problems. I was prescribed Betnovate cream which I have to say has done a good job of clearing up a lot of the rash (it did end up spreading to wrist, elbows & behind knee creases, right down the front of both shins and at the base of my neck. Well the outcome is I still have numb feet. Just had another annual health check, no mention of thyroid just raised liver function reading (was told a while ago I have non-alcoholic liver disease & was sent for an ultrasound). So because I still have numb feet after coming off thyroxine, I don't know which way is up anymore. Would appreciate anyone's help/suggestions. I will try and post my full results from my annual test. I require the help of hubby to do this as I'm a technophobe when it comes to stuff like that. So it will either be this evening or tomorrow. Apologies again for such a LLLLLLONG post.
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I guess the important question, irrespective of blood tests is how you feel? Do you feel worse after stopping the Levo, more fatigue, feeling cold, dry skin, weight gain etc, or no different?
Thyroid problems are often diagnosed during menopause, your GP is correct there. But 50mcg is only the starter dose and many feel worse until we get onto the proper replacement dose of Levo. So stopping it suddenly seems drastic.
The NHS is notoriously reluctant to prescribe Levo so you must have clearly needed it. And they should be monitoring your thyroid function regularly to make sure you haven't gone Hypo again.
Thanks for replying Sparklingsunshine. I am feeling more tired but it seems to be intermittent not constant. I do have dry skin & my hair seems to have gone more dry & brittle since stopping thyroxine. I seem to suffer from what you guys call 'brain fog' but not all the time. I am saying something, get mid-sentence & then can't think of the word I actually need. Don't know if that's brain fog or just plain old age. Definietly weight gain. Started new year by reducing my calorie intake. Doesn't seem to be making any difference. Suppose it could just be an age thing again - they say it is harder for a woman to lose weight after menopause. I always used to be able to lose weight on Atkins. Tried it recently & it didn't work. Anyway as I said I will post my results this evening or tomorrow. See if you spot anything out of whack because I wouldn't know it if it got up and bit me! Thanks again.
Please do, but as I said blood results are only part of the picture, symptoms are more important. At least to us patients, doctors not so much 😒. The symptoms you describe are definitely Hypo, but could also be menopause as well. Its so difficult to seperate the two.
Can I just check… you’ve been off thyroxine for a year and your remaining symptom is this foot pain?
Any way, I am sorry you are going through this. For me, I can share prediagnosis and Levothyroxine treatment I did not experience pains in my foot, down the whole of my legs, and bottom and lower back. These have all progressed since being on Levothyroxine. And, the recent attempt of coming off it for a week, the pain was more pronounced. It appears to be dose specific for me. But, I don’t understand how this has happened given I didn’t have this issue before treatment.
Hi HealthStar Dust thanks for replying. No it's not pain, just numbness and as I said, not full numbness, I can still feel things in my feet. Maybe it's not related. I'm not sure of anything anymore as I expected when I came off the thyroxine that it would stop. It hasn't????!
In addition to hypothyroidism, insufficient of some vitamins can cause the issue. Often people mention B6. But it is important with B6 not to take too much. And to take the form known as P-5-P (not pyridoxine).
Hi Helvella, as I said above it's not pain just numbness. I am not taking vitamin B6. I am at the moment taking 800iu of vitamin E & have done for years. Started taking Magnesium since it was mentioned on this site (250mg) and both hubby & I are taking vitamin D 5,000iu since the emergence of Covid (vitamin D was recommended by Dr John Campbell) and I think one of my blood tests came back with a vitamin D deficiency. This is why I need to know after I post my results whether I need to get some private bloods done.
I have edited my reply - I meant to say "foot pain AND numbness". It is worth considering a P-5-P vitamin D supplement or a B-complex - but take care not to have too much.
I certainly wouldn't ignore the possibility that relatively high doses of vitamin D are contributing. I would not take the advice of Dr John Campbell who is NOT a medical doctor.
"He received the Ph.D. for his work on developing methods of teaching via digital media such as online videos."
You cannot know your vitamin D levels without testing. Pretty much the only reasons for avoiding testing are cost and circumstances in which they cannot reveal anything.
I did have the foot numbness previously after an earlier tablet rebranding I was previously on Eltroxin by Goldshield which I was fine with. They rebranded as Mercury Pharma, the numbness started. I was not taking any vitamin D supplement then. The numbness went away when I switched my brand to Actavis. This is why I'm confused.
Thank you SlowDragon. I think I would go full belt & braces & go for Blue Horizon Premium Gold. Should I stop off taking any supplements before the test? Would I have to leave them off for a few days in advance?
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