Hi I can understand that starting levothyroxine might make you feel worse .but why is it not everyone's feeling worse or just take the thyroxine and improve. . I am feeling like I would rather not be medicated and least be myself or Try to be rather than be worrying why I am in pain bones aching .back hurting coughing up mucus years .Head congestion balance not great not able walk . V little life and stuck indoors most time . I know my gp doesn't understand thyroid problems each review I have a diff one I have never seen assess my readings .one in August happily left me on 50 mcg saying it had stabilised. I didn't agree .but after that I started feeling worse am now on 100 mcg which fir my weight would be too low ..I feel my increased need to be quicker but am concerned next review as the Dr thought he was just tweaking it a bit I wasn't even in the reference range . Bit worrying that next review they will say oh that's fine . X
Low thyroid query : Hi I can understand that... - Thyroid UK
Low thyroid query
Hi Janine, when is your next blood test due ?
there's no-point worrying about what your TSH might be until you have the result.
what were the results of the previous test ( before dose was increased to 100mcg ) ?
(unless TSH was already lowish ,then your ? 25mcg increase is unlikely to send it below range)
why doesn't everyone feel worse ?/ why is it not just a straight line to getting better once you add levo ?
because:
a) the body's thyroid hormone regulating system ( and it's system for converting T4 to T3) is extremely complicated .......and b ) we are all individual ..... so if you times 'complicated' by 'multiple different individual responses'... you get 'all sorts of different potential reactions to 'taking x' dose of levo' .... and that is before you add in any other conditions we are suffering from .
Which is why all treatment for hypothyroidism is pretty much a game of "suck it and see , then test again ,, then adjust a bit ,, then suck it and see ... then test again , then adjust a bit more ,, until (hopefully ~ if the doctor knows more or less what they are doing) you get gradually closer to the optimal dose for you as an individual.
Thank you for reply. My reading was serum tsh 5.7 ml( 0.27-4.2)Serum free 11.6 (12-22.00)
The gp who rang me. Said your thyroids ok .I don't see how could be. Then he said oh well it's better than it was. . It was tsh11.5 in March 2024 . And now increased to 100mcg he said needed tweaking a bit may be .
I am going chilled and cold and very down which I know is because not high enough . Seems like a long battle ahead. But maybe it will be somewhere near. I think my next review will probably be after Christmas now thank you for advice as
looks like you've been taking 100mcg for about 4 wks now .....i'm hopeful you might start to feel some benefit in the next week or so. I know it takes me more than 4 wks to find out what a new dose feels like .I've learned to not pay too much attention to how it feels for the first 5 wks ....and then pay more attention to how i feel from wk 5/6 onwards ....so fingers crossed, you may yet have improvements on 100mcg.
GP not great on thyroid , not if he thinks those result were 'ok' .
The correct response to seeing those blood should have been " how do you feel ? " and "i think i should increase the dose a little because your fT4 is below range and your TSH is still higher than the majority of healthy people "
Thank you I know from being on it before and had bad reactions but the specialists I saw then 20 years ago never ever said oh you're feeling rough because takes while to adjust .the first top consultant actually laughed and said can you hear yourself !! When I said I had started off perfectly well .and Dr insisted I needed have then then had instant reaction rashes on torso going cold chilled not sleeping agitated dizzy heart racing . Even now no gp. Has discussed how you feel now . Like you say they prob should but just quote readings. The Dr who did review in August said 50 mcg was stabilising so kept me on that wrongly . ..After severe neck pains another gp raised it to 75 .saying no that's too low . .the August one said are yiu feeling tired I said no I never have been so that was that .kept on 50 mcg until I'll ..
I did write to surgery saying wasn't happy and why no GPS ever ask how you feel as if its all about readings shouldn't it be about how the patient feels but no response to that . .I said that gp didn't.seem very knowledgeable about thyroid treatment just fatigue ? I have a list I suffer every day . But it's how it is thank you I will have to see how get on . Just affected my walking badly last July and now it's very upsetting as can't get on with life .one gp who started Me on thyroxine seemed think it might get better once at right level. I just can't see it . But all I have to hope for . Good advice as always Thank you x
I am not surprised that you feel awful and it seems that your doctor apparently cannot even read a thyroid function test.
TSH 5.7 ml( 0.27-4.2) this is above! the reference range
Serum free T4 11.6 (12-22.00) this is below! the reference range
So you definitely need an increase in medication pretty swiftly and pretty likely another one after that. Tweaking my backside!!
If your T4 is so low, your T3 will probably be even lower and this is what will give you the symptoms. Once you have been on your current dose for 6-8 weeks you need to get tested again and if the levels are still low you need another increase. I am afraid at the beginning it is an increase and wait, increase and wait game, until you have reached optimal levels - and this may take a while.
In general, replacement doses can be around 1.6 to 1.8 mcg levothyroxine per kg of bodyweight, however, some people might be okay with less, some might need more, so it is just a guide and should be geared to the individual. However, if a doctor is stubborn and does not want to increase despite you having symptoms, you can cite the NICE guidelines, where this is written down:
cks.nice.org.uk/topics/hypo...
Have you had your iron, folate, Vitamin B12 and Vitamin D tested? If not, I would advise you to get this done. If any of these nutrients are low or even deficient, you cannot make the most of your thyroid hormones, which will also contribute to you not feeling well.
Thank you. You sometimes wonder with these Drs. I guess they do think we know nothing . I was told by the consultant all those years ago that if I came off them it could be fatal. . So I carried on for five years then it affected my head and went very lifeless . I then asked see a diff specialist who said you don't get on with thyroxine try these thyronine. It's for people like you I ended up.exactly the same and another two years out of my life .I see now lot people are having t3. With t4.and feel better. . It took.a lot for me to try thyroxine again but I didnt react like did before. Thankfully. So am trying to get to.that point of feeling well again . . Would you.feel better just on t4. As I was given all those years ago. No I wasn't in any reference range in August or november . I can only hope I am at next review as doubt they will be keen on increasing long as 0.1 in ref range. It's worrying that we might all stay unwell if Drs are dealing with it. I have little confidence in them. . Thank you it helps a lot to have your opinion on dosage. X
Sorry yes had vitamins tested . Think d and b12 were at lower end. So been trying take some . Ferritin might be lower too. Not sure what do about that. X
Yes good Vitamin D levels are important. I take 3000IU Vit D each day (even in the summer) with Vit K2 and I take some magnesium with it as well. My levels started out at around 60 a few years back, but are now 126 nmol/L. I think aiming at over 90 at least would be good.
Igennus do a good Vitamin B complex, which includes Vit B12, you can take 2 tablets at the beginning to get your levels up quickly and could then take 1 to maintain the levels. Testing again after a while would be good so you can see where you are and if the dose needs tweaking.
With ferritin, you can increase your intake of iron rich foods, such as meat or even liver if you can stand it, or you can eat non haem iron found in plants and seeds (needs to be taken with Vit C to help absorption). Many people have difficulties with increasing their iron stores by diet alone so they take supplements. Haem iron supplements (from animal sources) seem to be working very well, but you can also take synthetic iron supplements. Important thing is to test again after some time on the iron supplement, because you do not want to go over range, as you cannot excrete iron easily and it can accumulate in the liver.
Its all a bit of faff at the start, but once you get into a routine, it won't be as bad as it may sound and it soon becomes second nature. š
Yes you wonder sometimes what these doctors think. Pretty sure if they felt so unwell and had your problems, they would kick up a stink until they were feeling better. Try to keep strong and fight for your health - as you said, if we left it to the medics we would be bedridden and could not function at all. š¢ Fingers crossed that you can get an increase next time, but by the sound of it you may have to kick up a fuss. The only other option would be change the physician or even the surgery if that is a possibility, but sadly many GPs seem to be pretty clueless on thyroid matters!
Hi Tina Maria thanks for replying . Yes I had noticed the pattern of Drs not knowing enough. .I suppose they want to be on the right side not overdosing people. But if nowhere near the reference range even it's hard to understand . Yes I dread these reviews as I just think I can't believe word they say and I really need someone who knows what's going on. I have changed surgery as was just getting nowhere after I had gall stone ileus operation march2023. It was an emergency and I felt I had my life back afterwards was trying best to stay that way. .by June I started feeling like was losing interest things I do crafts and sell them . But started sitting in chair and couldn't motivate myself. .Then had severe pain burning in head and walking problems started holding on to walls and furniture just to get around house. . Was scary. I am not sure what's causing it. But gp thought thyroid could possibly be why. . I was surprised at that as never heard much about it. My leg muscle strength is good and physio I saw last week said he doesn't know why can't walk was going talk to gp.possibly send me elsewhere such as rheumatologist but I don't think they have as haven't had any letter. Walking is tiring and no pleasure. Tho I try. Legs were like jelly. .might see spine specialist after Christmas. Physio thinks nothing wrong spine . Arthritic knee hip not that bad. Left side. Nothing to explain it so far. Don't like think no-one can diagnose it but be handy as need blue badge might help a bit . Thanks for your help I will attempt to get increased when reviewed . I know I need it waiting 8 weeks while feel unwell is hard . But thank you all x
Well, thyroid hormones are involved in many metabolic processes, but GPs so often dismiss that and look for reasons outside thyroid function. Hypothyroidism can cause muscle aches, tenderness and stiffness. Thyroid hormones increase the rate at which muscles relax and contract, are involved in muscle metabolism and affect glucose uptake (this is why you can see higher glucose levels in people not treated sufficiently) and are playing a role in muscle repair. And especially T3 needs to increase when you exercise. So, if you do not have enough thyroid hormones available, your muscles cannot function as they normally would and you literally run out of energy and get tired.
I have found an interesting publication looking at this:
pmc.ncbi.nlm.nih.gov/articl...
However, instead of treating the underlying cause, they are dithering around with looking at other things, as it cannot possibly be thyroid related! šš¤¦āāļø
Hi again. That's very true. They don't think it can possibly do anything than make you tired. The physio said I looked tired so he questioned my sleeping well. . But as I said my thyroids out so it's prob that . Not his subject really I have always been glowing with health now I don't feel well at all . Yet am doing everything I am advised . Taking thyroxine especially as I didn't want to go through that again . But I didn't feel well off it this time so was thinking what choice do I have . Have bone aches everywhere. Back neck. Shoulders. Knee throbbing. Hip tingling down to knee. Other legs aching too .tooth ache even was horrendous few months back saw dentist who said that tooth needs come out waited six weeks for app. Then dentist said no can't find anything wrong with it . It's getting very hard as no-one seems know what's going on. Can't see a light at end tunnel. But I don't think I am a medical mystery must be someone who can test or know. Am referred to spine surgeon as yet another gp.Said there's no right or wrong place to send you . But it's not normal no. . Thank you. For your reassuring advice. It helps a lot. X.
It will probably take a bit of time until you will feel an improvement, especially as your thyroid hormones are so very low, so bear with it. This is why your GP should test you after 6-8 weeks on your current dose and then increase your dose by 25mcg again. Most people feel well when their TSH is around 1 or below and the T4 and T3 at least 60% through the range. So you still have a way to go. But keep at it and try to improve your nutrients as well, as they will help you make the most of your hormones.
Sending a big hug and hope you will see a difference soon. x
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