In August a Dr reviewed my results by telephone. The t4 was at 12.1 then. And she said that my levels were stabilising . I didn't think so and said I hoped she would raise the dosage. .she said they could but would leave it 8 weeks to see .
I know 50 mcg is a low dose and not adequate .feel very unwell . Walking is still very bad Drs are saying it could be thyroid related and may go once levels are ok . I hope so.
A diff dr I saw as has severe neck pain left side. Then immediately said no your dosage is too low. Upped it to 75 mcg with view to retesting it end November.
Now I have had see another Dr as so unwell. Who has run the tests I had yday.and these are the results. The T4 levels were 12.1 last time .I didn't eat before the test or take the thyroxine as advised . I really need to know what to say when the Dr reviews it .but I think I am way off being on right dosage still . Thank you
You have an ultra conservative doctor there and going to need to chivvy them along to get your much needed increase. No doubt you need several increases before you begin to feel a little better.
It will help if you do some homework before your appointment to arm you with evidence that an increase is required. Also try a different doctor at the same practice who might be more open minded.
Your doctor should be taking your views into consideration as per Nice guidelines:
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility”
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. “
Hi thanks for that reply . The other tests aren't thru yet as only did them yesterday .I think everything was going smoothly increasing up to 50 mcg then I had a Dr who said stabilising when I knew it wasnt 0.1 inside the reference range .the other Dr' immediately said your dosage is too low up it to 75 may even need go 100 .as I am quite heavy as put on weight when this started last year .I think it may be even higher dose than that needed but will wait til I get the phone call when they assess it .as vitamins aren't back yet they won't be in touch til have the whole picture my vitamin b12 etc were OK but I know they say need be more than that .I do take b12 and vit d if I remember not sure it's going to help .don't like taking anything unless tests show deficient really . Hopefully will get update when Dr gets in touch the one who ordered the tests seemed very thorough. Hopefully won't get another one who just leaves it at this level thank s xx
Start a new post when you have the vitamin levels.
Make a note of the GP who said you might need 100mcg & try and get to see/speak to them in future. If one doctor says no increase then always try a different one.
Thank you. I can't see how they can say it's ok as they were assuming my mobility issues were caused by it. And telling me to wait til get to the correct levels it May all go then. My walking is particularly bad now and felt slightly better in August . I have mucus really bad walking is impossible without hubby and stick I was walking alone until June last year now holding on walls furniture .anything to get across the room .manage stairs but can't rely on my legs support very wary . Should I get to the right levels and still like it. They may look into things. I have finally got the last Dr to refer me to spine surgeon but he thinks they won't do anything . May be orthaepedics if not . So far they hsven t found anything serious enough to cause walking problems. I just can't wait to get to the right levels for me in hope that I can get some life back. Very upsetting but nothing can do. X.
Having Low Thyroid Levels can cause the walking problem. You will get the help you need from this site, it's complicated but by reading and following the advice I became well. Your can have private thyroid and vitamins test and put the results on here.
Hi they changed my pills to 50 mcg of one and 25 of a diff brand so I have two different ones. Not ideal .but they seem ok .no immediate problems like when I was put on them 20 years ago. . After visiting Dr few weeks ago I also found that my ct.of abdomen pelvis showed I had diverticulitis .no-one had told me results . So that might have been causing problems strange tho as just started the teva.brand that week . One I take now is accord .the other is hill something I think x
I don't see mention of reverseT3 so if you have not had that test, ask for it. Reverse T3 stops T3 from being used by your body. T4 is converted to T3 which is the active hormone. High reverse T3 could be your issue. Without enough active freeT3 going to your cells even with additional T4 you are not likely to feel better. Just a thought...
Reverse T3 testing is almost unobtainable in the UK. Certainly, it is effectively never done on the NHS, and some private test options actually send the samples to the USA.
It also seems to not be the case that rT3 stops T3 being used by our bodies.
I think you'll find the link I supplied goes to several pages each of which details many aspects of rT3 and include specific links to published papers.
ThNk you yes I read about Dr's not testing for that unless they think necessary I suppose of leave it to the specialists . The Dr who decided to keep me on 50 just said are you tired at all I said no I never have Been but don't feel well and can't walk . Still she decided to keep me on low dose . I was quite upset .relieved I was taking them without heart racing rashes. Going cold . Being out on beta blockers like before . And I was well before thar getting on with life happy all on interests of getting a perfect reading in end I had to cone off then as the specialist didn't have any ideas why just hoping this tine things do get better as want my life back or some diagnosis of why else I can't walk Thank you . X
Can't walk? What does that mean? Are you too tired? Are your muscles painful? Do your knees give out? You may need ssomeone other than an endocrinologist depending upon your answer.
Hi Thanks for asking. I suppose I had been unable walk freely on my own a few years after not taking thyroid medication anymore. Started with pain ball foot right side .then I would need hold on to hubby arm of walking and would be stopping as legs became tired rested a moment then carried on . That's how it was until last June I had my first ever operation in March 2023 gallstone had made its way through my bowel wall . Before that I had inflamed gall bladder but Drs wouldn't do operation after as said your thyroid out .dangerous and may go into a coma. I told them I had been fine and off thyroxine and tried thyronine both made me very ill . So they did say that should I need a operation it would be weighed up the pros and cons. But year later I had the stone problem that was emergency could lead to sepsis if burst . Anyway after recovering from that I was feeling v well. Not on any medication at all. .still needed hubby arm no stick tho. Couldn't do long walks and not pleasant . But I tried . I used to hike 12 Mile days loved it. . Ten weeks after the operation I was loving feeling well. No head pain no coughing up mucus as I had a nose drain fitted before opened and after. June I just got up and was holding onto furniture and walls unable walk . I rang dr who just said see the physio still. He checked leg raises . And thought was something else bursitis I think . Exercises to do. July I had severe pain head after returning from holiday .Very depressed .tearful .told my hubby this wasn't normal. Concerned about strokes shouldn't I go to a and e he said no don't want sit there hours. I didn't care as felt so unwell . Tried walk in shop.Couldn't. Sat in tears as knew unable walk. Bought a mobility scooter in case needed .saw Dr who did checks eyes et c checked strokes I suppose. Ended up a and e where was told i didn't qualify be scanned as hadn't lost control bowels et c .so they requested my gp do one on spine. They didn't do one tho. Said nothing new would show. In end I changed surgeries . Where I am now. I had that spine Mri.about a month ago. Nothing that bad showed and mainly right side not the left . My hip left side has few arthritic changes nothing major just getting older . No referral for hips .not seen orthaepedics as they didn't think bad enough .I can't walk. How bad does it have to be ? After saying few weeks back I think need see neurologist I am getting referred to spine specialist. But Dr says they might not .if can't help. . I have stenosis in spine slightly. Spondylitis was mentioned nothing severe. I go to walk and my legs won't move or wobbly like jelly . With a stick I can just about hobble around a shop short distance with trolley support. Legs have been tingling from my affected hip to knee and that's feeling numb now. .has got worse about month ago I suppose. .back hurts base spine too just aching . Sometimes feels like slipping out. . If was thyroid related and got better I would be over the moon to walk again .hubby does most things. Balance isn't great but have had sinus how things going over three years that nothing has helped with. Coughing up mucus. Is another one thyroid related or could be. . I want to walk but soon as on legs I can't step out far and exhausting. . Sorry it's a very long story. .it would make sense that it got worse years after I had to come off thyroid medication . And now it's affecting walking as well. . I felt so well last April to July . I had forgotten how it felt tbh.. Just hoping upping dosage helps. Drs don't have time to listen to all this. Thanks for helping. Xxx
You are a very complex study and it doesn't seem that you are getting any help. Each dr seems to be saying they don't know and then not persevering to find the cause. You are probably going to have to try to pursue this more yourself by doing some online study. Maybe you can get some clues. Endocrine alone if you are medicated as the basis doesn't really make a lot of sense, but it could have an effect. If you have no thyroid which if I understand correctly you said, then you need substitute thyroxine and levothyroxine too or you will not function at all. Getting the right amounts makes all the difference. Testing and a correct interpretation are a little difficult to get though. Ball of foot pain-I know this sounds strange-but I have had Lyme Disease and the other infections that often occur with it and ball of foot pain was an issue for a while. Too painful to walk. The tingling at the base of the spine and a lot of other pains can be related to infective processes or maybe misalignment of the vertebrae. I am just rambling on here because I have had so many problems myself and many of them have been diagnosed. I have collapsing neck cartilage so am familiar with the tingling and often burning that kind of thing can cause. For the past year I have had severe osteo arthritis in my knees so walking has been painful and I use support for climbing so when I wobble I don't fall down like a Weeble. I am familiar with some of your symptoms. I wonder if you would benefit from a cervical MRI. If your neck is out and all of your back is unbalanced there could be nerve impingement. Have you considered chiropractic? Acupuncture?
I think there are issues with my hip knee bit nothing that is bad enough for replacements yet borderline is all x rays say .the Dr started me back on thyroxine in May this year .I was very worried Bout getting heart racing and rashes dizziness .et c again but luckily it hasn't been instantly affecting me . So I can only carry on taking them znd hoping the levels get better. Not as quick as I hoped .but wil tackle the Dr if they don't Increase it .can't carry on like this esp walking . Just Been away few days with my family where I couldn't walk downhill back to our lodge I had hubby one side stick the other panicking and my daughter then came held my other arm .awful . Leg right side feels like dragging I suppose .have thought few times is it ms . .hope not . I had yo stay in the lodge while they all went for a walk upsetting but hubby drove and down to show me where they went . Last Oct we were in same place and was not long after this had all happened and still I am just the same apart from thyroid treatment nothings been done . X .
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