Feeling the effect of a dose increase after 8 h... - Thyroid UK

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Feeling the effect of a dose increase after 8 hours?

Jacarilla profile image
26 Replies

Is this possible. I do seem to over react to levothyroxine (eutirox) my recent results were on the low side, especially T3 so my Endo suggested I continue on 88mg a day (I was feeling relatively well) but take 100mg on Saturdays and sundays. I was a little reticent as I didn’t fare well when I tried varying doses in the past but thought I’d give it a go.

Today for the first time I took the higher dose at 8.15am and went out for a late lunch as planned at 3pm. By 3.45 and half way through my first course I lost my appetite and didn’t eat much after that, it’s a hot day here in Spain but I was in the shade. I started to feel like I was over heating rather than just feeling hot, then started to feel faint and breathless. This got progressively worse and my husband had to take me home in a hurry, I didn’t pass out but felt truly awful. Once home I lay in a cool room for 90 minutes and felt a little better. It’s now 2.5 hrs later and I still feel generally unwell but I’m not breathless or hot now, just a bit headachey.

I’m thinking this is to do with my increased dose today, could it affect me this quickly?

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Jacarilla
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helvella profile image
helvellaAdministratorThyroid UK

I have watched the impact of a small dose of levothyroxine on someone. And within five minutes an effect has been obvious and significant.

Appreciating this doesn't cover what happened today, but I simply do not understand the rationale behind having as different dose on Saturday and Sunday. Why two days in succession?

I suggest that, if it is even a sensible dose, it would be better to do something like three days at 88, then one day at 100. And repeat. (There are obviously many possible permutations and, even if that is your plan, you don't need to stick to it 100% if you feel it is not going right.)

Jacarilla profile image
Jacarilla in reply to helvella

I agree and I think that would be my plan, however after what happened today I’m afraid to take another 100mg dose if that’s what was responsible for how I reacted today. I seem to be one of those sensitive souls who is prone to low blood pressure and fainting, I live in Spain so am used to the heat. My body seems to over react to whatever medication I take. I’m tempted to stick to 88mg which I seem to cope with however that leaves my T3 not even on the bottom of the scale…I wonder what would be the long term impact of this?T4 free serum. 1.37. ng/dl (0.78 - 1.80)

T3. Free serum 1.93 pg/ml (2.0- 4.4)

TSH. 1.13 μUI/ml (0.35 - 5.50)

helvella profile image
helvellaAdministratorThyroid UK in reply to Jacarilla

You might find you have to spend a while at what you end up thinking is an intermediate dose. Get used to it. Then try again.

I'd also very much encourage looking at things like iron (ferritin, etc.). Low iron has a lot of impact on our tolerance thyroid hormone medicines.

Jacarilla profile image
Jacarilla in reply to helvella

Thanks helvella, yes I think I need to tread carefully and see if I can find a way I can tolerate the increase … I think my other results are ok-ish although I have just started taking B12 and have been taking vit D for a while

Ferritin. 151. ng/ml(15 - 150).

Folic acid 3.64 ng/ml (0.35 - 3.37)

B12. 317 pg/ml (221 - 911).

Vit D. 29.06. ng/ml (20 - 50).

Calcium. 8.5. (8.6 - 10)

helvella profile image
helvellaAdministratorThyroid UK in reply to Jacarilla

Calcium should, pretty much, never be out of range. Is that an adjusted calcium or what?

Ferritin looks good - but I am suspicious that it is as high as that due to inflammation. It tends to rise, sometimes quite dramatically, when there is inflammation anywhere. For that reason, it is important to have a more complete set of iron tests - the precise choice will depend on practice in your area.

Jacarilla profile image
Jacarilla in reply to helvella

I’m not sure what you mean by adjusted calcium? After my surgery last year I was given calcium tablets for a while but have stopped taking them now and my level has dropped a bit. I’m told ferritin tends to be higher post menopause - I’m not aware of any inflammation.

I can ask my Endo for a complete set of iron tests as I am a private patient, although he’s not as knowledgeable as I would like he is fairly accommodating if I explain my reasoning.

helvella profile image
helvellaAdministratorThyroid UK in reply to Jacarilla

What is being tested?

Calcium is one of the most important minerals in the body, required for proper functioning of muscles, nerves, heart, as well as essential in blood clotting and bone formation. About 99% of calcium is found in the bones, while most of the rest circulates in the blood. In the blood, roughly half of the calcium is ‘ionised’ (or free) and is active; the remaining half, is bound to proteins, such as albumin, or complexed with other compounds, such as phosphate and bicarbonate, and is inactive.

Most commonly, laboratories report a value for ‘adjusted calcium’, (also known as corrected calcium), which is the measured calcium value adjusted for the albumin concentration. This is because abnormally high or low albumin concentrations can alter total calcium concentration independently of ‘ionised’ (active) calcium concentration. Therefore, ‘adjusted calcium’ gives a better indication of the ‘ionised’ levels.

In some conditions, such as during major surgery (particularly after a blood transfusion), in critically ill patients, and patients with abnormal protein concentration, measurement of ‘ionised’ is needed, as ‘adjusted calcium’ level is likely to be misleading in these situations. In these situations, ‘ionised’ calcium is measured on specific analysers known as blood gas analysers or point of care (POC) analysers; thus special sample handling is required.

Urine calcium is used to indicate how much calcium is being excreted by the kidneys.

labtestsonline.org.uk/tests...

The lab test online people have created sites in a number of countries, including Spain. That might be helpful if you need to express your self in, or understand, Spanish terms and custom and practice.

helvella - Vade Mecum for Thyroid

The term vade mecum means:

1. A referential book such as a handbook or manual.

2. A useful object, constantly carried on one’s person.

Please don't get put off by the number of pages!

Nor by the fact it is targeted at people interested in thyroid issues. Much of its contents could be of use to many involved in health issues. Things like abbreviations, lists, general reference information.

In particular, it is not intended that you sit and read the document. Just that you download it and know you can look things up.

If there is anything you'd like me to add, let me know.

Not everything is in this one document - my major medicines document is still separate!

From Dropbox:

dropbox.com/s/vp5ct1cwc03bl...

From Google Drive:

drive.google.com/file/d/1ZW...

Jacarilla profile image
Jacarilla in reply to helvella

Thank you so much helvella… there’s certainly a lot of information there for me to reference. It was free calcium that was measured. My Endo was not concerned that it was slightly below the bottom of range.

I don’t eat much dairy due to intolerance but am trying to increase.

I stopped the calcium tablets as I read on this forum that they weren’t the best thing to take long term and I had taken them for 6 months.

I had a bone scan a couple of years ago which showed a few areas of bone density thinning. Not unusual I believe in post menopause.

I take vit D and magnesium glycinate supplements.

I will ask my Endo about the high ferritin next time I see him. Again he wasn’t concerned about this.

helvella profile image
helvellaAdministratorThyroid UK in reply to Jacarilla

If it is a genuine reflection of iron levels, then it is high but not in itself a problem.

If it is due to inflammation, ideally you'd find the source of that. But it is not always easy.

helvella profile image
helvellaAdministratorThyroid UK in reply to Jacarilla

They generally do a pretty good job. At least, they are very good as a start point.

Guost profile image
Guost in reply to helvella

Hi I am very sensitive too and have been struggling lately . I too had your symptoms and I was over medicated . I went to see a private Endo. My vit D was 57 she said I was defiant it should be 100-150. Also your B12 is low it should be 500. B12 can give you a lot of horrible symptoms.

Jacarilla profile image
Jacarilla in reply to Guost

Thank you guost… it’s nice to know it’s not just me! I’ve started taking vit B12 and already taking D 👍 hoping that might help :)

Guost profile image
Guost in reply to Jacarilla

Hi you will really need 3000iu for your level of vit D to make a difference x

Lalatoot profile image
Lalatoot in reply to Jacarilla

Don't take it in one dose. Try splitting it and take morning and night. I have always split my dose as I found it too much all at once.

Jacarilla profile image
Jacarilla in reply to Lalatoot

Bless you and all the lovely people on this forum, life savers all of you!! I will try this ;)

tattybogle profile image
tattybogle

well i can now tell by about 2 pm if i have forgotten my morning dose.. so i do believe it's possible for some of us to feel very small changes on the same day.

I agree with helvella .. if you do have to take differing doses on different days because splitting tablets any smaller is impractical . then they should still be evened out over the week as much as is possible.

just a thought, but have you considered adding the extra 25mcg in the evenings before bed eg. two evenings of 12.5mcg . (assuming you can keep it far enough away from food / other meds etc) ...

i always split my levo dose nowadays ... 62.5mcg am and 50mcg bedtime ... just seems to make more logical sense to me than dumping a whole days worth in all at once... the thyroid wouldn't do it that way . it would give you little bits spread over the day and night

Jacarilla profile image
Jacarilla in reply to tattybogle

You make a very good point tattybogle. I hadn’t thought of that. I take whole tablets as eutirox is available in 88mg and 100mg tablets, the smallest available is 25mg which I could split. I will certainly give this some thought and thanks for the suggestion.

jrbarnes profile image
jrbarnes

I've been having this issue as I try to increase my Levothyroxine and am extremely sensitive to dose changes. I was on 88mcg for more than 10 years but had to recently increase my calories to help with my conversion of T4 to T3 leading to weight gain which has increased my Levothyroxine needs. If I take the higher dose on consecutive days I tend to feel sweaty, hot, and unwell so I leave 2-3 days between the higher dose. You can also take the 12.5mcg at night. I've put on enough weight so that I'm on 100mcg per day and it's not enough. I still have my 88mcg pills so I'm halving them and plan to take an additional 44mcg on Monday night and possibly another 44mcg on Friday night. You may have the issue of 88mcg being too low but 100mcg being too high so when taken on consecutive days you experience those terrible symptoms.

Your T4 level are not bad but your T3 is low. I had this issue when I wasn't converting thyroid hormone well. Even with proper conversion you may need your T4 to be a little higher, however If you increase your T4 levels and you're not converting well then it won't be helpful. So if you increase your T4 levels and your T3 remains low then you may want to discover what is affecting your conversion. My conversion problem was due to under-eating due to my low appetite caused by the hypothyroidism. Take care

Jacarilla profile image
Jacarilla in reply to jrbarnes

Hi jrbarnes, I do seem to be sensitive to dose. I was initially on 100mg but after a couple of months I was feeling unwell … at 88mg I felt ok, not bouncing around like tigger but ok lol! Just one dose of 100mg yesterday morning sent me into a tail spin.I’ve had lots of really helpful advice about splitting doses and distributing across the week. It’s early days for me, only 9 months since I had the remaining half of my thyroid removed due to reoccurrence of an adonoma. So the whole levothyroxine thing is new to me as I coped well with half a thyroid and required no meds. It appears it’s a marathon to find the right solution! It’s interesting you talk about calories and weight, all part of the fine balancing I guess. My weight tends to vary by about 10lbs up and down and went up when I was on 75mg (which also caused terrible joint pain) the joint pain resolved when I increased to 88mg but my weight has remained the same.

arTistapple profile image
arTistapple

I find I get these episodes out of the blue and before and after ever being diagnosed. I assumed they were due to under medication (or no medication pre diagnosis) and find I still have them. My meds have been stable-ish for a bit and I am about to organise my first private testing. Again another argument here for careful, very careful prescribing. I keep seeing posts which show that there is a red thread showing our similarities but that our needs (re: medication) can be so different.

Jacarilla profile image
Jacarilla in reply to arTistapple

Indeed there is a need for careful prescribing but for that you need a competent doctor and there in lies the problem as so many people on this forum know :(. It’s worrying that you get these episodes for no reason.

arTistapple profile image
arTistapple

I am not so worried about these episodes. I have had a good number of them over the years. They are horrible but I am oddly grateful and pretty convinced they are connected with the thyroid, now it has been finally diagnosed. However a competent doctor with curiosity would be more than useful to further help on the journey. I can’t help thinking we deserve better. It seems to me that ‘we thyroid patients’ are on the one hand very sensitive and on the other, the system just can’t deal with that. We are easily steam rolled because we find it difficult to advocate for ourselves. I just have not been up to it for years. This forum is preparing me for this difficult task. Thank you so much for raising this experience. Again so helpful to know others experience it as you describe.

Catseyes235 profile image
Catseyes235

Maybe I’m being stupid but I’m not sure what dose of T3 and T4 you’re actually taking and which you’re being asked to increase at weekends? Btw calcium among many other things like antacids, can effect the uptake of thyroxine. Lentils and mushrooms are a good source of calcium.

Jacarilla profile image
Jacarilla in reply to Catseyes235

I’m just taking levothyroxine (eutirox). No T3. I’ve been on 88mg for about 10 weeks now. I was slightly over medicated on 100mg then dropped to 75mg and went the other way. On 88mg I feel ok but my results are on the low side again. I also appear to be dose sensitive.I’m not taking calcium supplement now but when I did I made sure I took it well away from my levothyroxine.

Catseyes235 profile image
Catseyes235 in reply to Jacarilla

Thanks for your reply. Sorry I can’t help really. I was continually being asked to reduce Thyroxine on the basis of TSH being really low and suggesting I was overtreated. I wasn’t - and had no symptoms to suggest I was hyper. Now on tiny dose of T3 and loads better. ...and upped my T4 a bit. It’s a minefield and everyone’s different. I think you said you still had some thyroid left which will add another dimension. Good luck..!

Jacarilla profile image
Jacarilla in reply to Catseyes235

No thyroid left … my next stop will be to try T3 but before then I’m trying to improve my B12 and D to see if that improves T3

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