Upping my meds in big jumps: Can anyone give me... - Thyroid UK

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Upping my meds in big jumps

Revsie profile image
13 Replies

Can anyone give me their views please? I've been on various levels of T4 and fought long and hard to try T3 which I succeeded at, however I didn't feel any different to be truthful on T3 (20mcgs twice a day) so I switched back to a T4/T3 mix (20mgsT3/50mcgs) taken altogether first thing in the morning. However as this still didn't alleviate my symptoms I have upped my dose to 20mcgsT3/100mcgsT4 a day, then many weeks later I decided to up the T4 again to 150mcgs which is what I'm taking now along with the 20mgs of T3. My question is that as it doesn't seem to affect me no matter what quantity I take so what does this mean? I don't feel shaky or increased heartbeat or anything when I up my medication (and I never ease into it I just upped by 50mcgs in one go each time). I'm still exhausted when I wake up but seem to feel ok by mid morning but am tired again by about 9 o'clock at night, my hair is dull, my skin is dry, (I have smelly feet which I never used to have!), I also wouldn't dream of going a full day without a shower or bath as I don't feel confident that I could miss a day. My eyes are piggy with droopy eyelids, my body is flabby and my teeth have gone a dull yellow colour in the 11 years since I've had an underactive thyroid. I don' t feel that my medication is helping me at all or is it just that my condition means that all my vitamins and minerals are useless in my body even though last time I was tested everything other than VitD was in range? Just wondered that's all?

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Revsie profile image
Revsie
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Clutter profile image
Clutter

Revsie,

25mcg dose adjustments are recommended because larger adjustments can make some people feel unwell and often people will over or under shoot their 'sweet spot' when making larger adjustments. As you have changed doses so radically it would be a good idea to have a thyroid test to check TSH, FT4 and FT3 when you've been on your current dose for 6-8 weeks.

Vitamins and minerals need to be optimal in range, not just in range. Post the results and ranges for comment.

___________________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Revsie profile image
Revsie in reply toClutter

Thanks Clutter, I seem to have been ignored by my endo for the past year so I'd better get in touch eh? Once I have any results I'll post them. Thanks for taking the trouble to reply.x

Clutter profile image
Clutter in reply toRevsie

Revsie,

I'm only monitored by endo once a year now unless ENDO alters dose in which case a thyroid test follows 6 weeks later. As it may take several months to get an endo appointment you can order a home finger prick thyroid test from Blue Horizon or Genova via thyroiduk.org.uk/tuk/testin...

Revsie profile image
Revsie in reply toClutter

I'll check when I last went, maybe I'm nearly due then?

humanbean profile image
humanbean

Being in range for vitamins and minerals isn't enough. Your levels need to be optimal if you want to feel at your best. Do you know what your current levels are? The most important are ferritin/iron, vitamin B12, folate and vitamin D.

Changing your meds in big jumps and getting no effects from it might indicate you have Thyroid Hormone Resistance (THR). What this means - if I've understood it correctly - is that the thyroid hormones you are taking are "knocking on the doors" of your cells, but the cells aren't letting it in.

I'm not sure how this is tested for, or if there is an official test.

People with THR often need quite large doses of T3. I'm not sure that levo/T4 will be helping if you have THR.

Revsie profile image
Revsie in reply tohumanbean

yes I was thinking along these lines myself. I've got loads of T4 and T3 coursing through my bloodstream but it's not going anywhere .... bit like a car with a tank full of petrol that won't start as the fuel pump isn't connected! I do despair at times but then I'm thankful that I'm not as bad as some poor folk on this site.

humanbean profile image
humanbean in reply toRevsie

It's possible, but not certain, that improving your nutrient levels might reduce the severity of your (unproven) THR. With the right nutrient levels your body may get better at using thyroid hormones. But for some people with THR the problem is permanent.

When looking into your nutrients remember that the list usually quoted - vitamin B12, ferritin/iron, vitamin D, folate - is an absolute minimum. There are lots of other minerals and vitamins that may contribute to feeling better.

There are lots of lists on the web about supplements for people with thyroid issues.

thyroiduk.org.uk/tuk/treatm...

Revsie profile image
Revsie in reply tohumanbean

many thanks humanbean I'll take a look at the website in my lunch hour today.

dede12345 profile image
dede12345 in reply tohumanbean

how much b12 should we be taking every day ?

humanbean profile image
humanbean in reply todede12345

That depends on the problems you have with absorbing B12 (if any), your current levels and any B12 deficiency symptoms you have.

If your B12 is low then you would be advised to get advice from the Pernicious Anaemia Society forum on HU who are the experts on B12 deficiency. You'll find them here :

healthunlocked.com/pasoc

Just join them the same way you joined the Thyroid UK forum.

If your levels are not great but not that bad then you could try supplementing. There are multiple ways of supplementing B12. There are sublingual lozenges/tablets - they are put under the tongue and allowed to dissolve as slowly as possible - no sucking or chewing. There are oral sprays which are sprayed under the tongue. There are patches you stick on your skin.

There are also several different kinds of vitamin B12. They are (1) cyanocobalamin, (2) hydroxocobalamin, (3) methylcobalamin, and (4) adenosylcobalamin.

(1) should be avoided. It is artificial, never occurs in nature, and can be found in cheaper supplements.

(2) is usually used for NHS injections of B12 for those who have deficiency or pernicious anaemia. I don't know of it occurring in tablet or other form.

(3) is a good version to supplement with. It is naturally occurring and most (not all) people do well with it. It is the one most often recommended on this forum. It can be bought/supplemented in various forms - injections, tablets etc.

(4) is the one that is made by the body by conversion from number (3) - if people can do the conversion - some people can't.

Personally, I alternate between supplementing (3) and (4) in lozenge/sublingual/tablet form.

B12 supplements can be bought from Amazon. Injections can be a bit harder to get hold of, and I can't help you with that.

Anyone supplementing B12 should also supplement with a B Complex capsule/pill as well. It isn't a good idea to be replete in one B vitamin and deficient in another, so supplementing them all is a good idea. Along with my B12 I also supplement with B Complex in the form of Thorne Research Basic B Complex, and I take 1 a day.

dede12345 profile image
dede12345 in reply tohumanbean

thank you ! I will ask to get it checked again

Revsie profile image
Revsie

Hi Sandy12, both my sisters and my mum as well as myself have underactive thyroids, my auntie on my dads side has heart trouble, my cousin has MS and my mum suffers from depression. Think I need to bring up the THR with my endo when I next go (but they don't believe me when I say I don't feel any differently anyway, so it'll be an uphill struggle!) I'm getting some T3 at the moment (20mgs per day) and I bet they'll be very reluctant to up my dose, but worth a try? Thanks for your response x

dede12345 profile image
dede12345

l feel for you Hugs

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