not tollerating T4: how would i know if im not... - Thyroid UK

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not tollerating T4

mandy72 profile image
28 Replies

how would i know if im not tollerating it?

what other options of treatment are avaiable

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mandy72
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28 Replies
PinkNinja profile image
PinkNinja

What are your symptoms? Do you have blood test results?

It is difficult to know as everyone is different. For me, I have been relatively well on T3 only. Recently I added only 25mcg T4 to my regimen and found symptoms returning after only a couple of weeks. The main ones for me are severe joint pain and insomnia.

Sometimes people aren't on enough t4. Sometimes it is due to low iron, high or low cortisol or lack of other vitamins and minerals. Some important ones are selenium, zinc and magnesium.

I'm sorry I couldn't be more specific but hopefully this has given you a few clues for working out whether you are having trouble tolerating t4.

Carolyn x

mandy72 profile image
mandy72 in reply to PinkNinja

TSH 10 im on 2/12 grains nature throid

headaches

suddenly feeling sick

dizziness

shortness of breath

fatigue

pains in legs

insomnia

irregular pulse

brain fog

i allso get a feeling of warm blood running through my veins

anxiety

mood swings

depression

zero tolerance

i was ill on thyroxine only, changed to NDT felt good for a while even got my memory back

as far as im aware my iron is good

not sure on B12 vit d or ferretin as drs will only check TSH

PinkNinja profile image
PinkNinja in reply to mandy72

Your TSH is far too high at 10. It is likely you are not on a high enough dose of NDT. What happens when you increase your dose. Do you feel better or worse? It may be that you need to increase in small increments every 4 weeks until you begin to feel well. Some people need up to 5 grains, others only need around 2. Everyone is different so don't go by what others take.

mandy72 profile image
mandy72 in reply to PinkNinja

dr wants me on 3 grains

if i try increasing i get jittery so sticking to 2 1/2

i even tried a 1/4 increase and felt jittery

PinkNinja profile image
PinkNinja in reply to mandy72

Ask again for serum iron and ferritin because these symptoms fit an iron level that is too low for your body to get enough thyroid hormone into the cells. The other possibility is low or high cortisol.

mandy72 profile image
mandy72 in reply to PinkNinja

i will ask

i had lowish serum cortisol last year, suggested adrenals to dr who said my body was producing cortisol and he checked sodium and potasium which were both ok

hubby is doing a big job at moment and said when he gets paid he will get me the saliva test as we cant afford it until then

ROMM53 profile image
ROMM53 in reply to mandy72

Do you take the NDT all at once ?

Just wondering if it would make a difference if you spaced it out during the day, thereby making it easier to increase up?

mandy72 profile image
mandy72 in reply to ROMM53

1 grain am

1 grain early afternoon

1/2 grain evening

mandy72 profile image
mandy72

i allso wake with pulse of 80'ish

ROMM53 profile image
ROMM53 in reply to mandy72

Is that your normal resting pulse?

60-100 resting pulse can be normal for adults.

Have you tried cutting a 1/4 grain into two and adding that into your current 2 and 1/2 grains? Some people have to increase in tiny amts.

You are very hypothyroid but every little increase seems to be making you feel as if you're hyperthyroid. Try adding in half of a 1/4 grain , see if you can tolerate that for a fortnight. Don't know what else to suggest :( x

mandy72 profile image
mandy72 in reply to ROMM53

i dont really have what id call a normal resting pulse as mine varies from 50-100, im comfortable at 65-70

the shortness of breath is the worst symptoms as it starts an anxiety attack and then im a mess

i can try the half a 1/4 and see how that goes....luckily i have plenty of 1/2 grain tablets as dr as only just changed the prescription so they will be easy to cut into 4

ROMM53 profile image
ROMM53

Re the NDT:Try that for a week, and try and get your ferritin /iron studies bloods done.

I think you're very underactive, but like a lot of us, it's not that easy to up to the necessary dose without horrible symptoms ! So difficult :(

Also ,Re B12 - are you low in range, is that why you're supplementing?

mandy72 profile image
mandy72 in reply to ROMM53

im seeing dr 11th may so will ask him then, B12 was low end of range so started supplementing as i wasnt going to wait for it to fall out of range

ROMM53 profile image
ROMM53 in reply to mandy72

Ahh..! In that case you'd be better supplementing with a B12 Sublingual spray .

I think I read in your other post, you were using B12 tablets/lozenges? You don't want to be taking anything B12 supplement-wise that has to go through the stomach. If you are developing pernicious anaemia, you won't be able to absorb B12 in the usual way through the stomach.

mandy72 profile image
mandy72 in reply to ROMM53

yes was taking Cyanocobalamin ones which i thought were causing me probs with cyanide

guess we can add paranoia to the list of symptoms

ive just ordered some methyl tablets but will try and get some spray

would patches help?

ROMM53 profile image
ROMM53 in reply to mandy72

I'm sure the spray that most folk use on here is :

"Better You B12'' Boost oral spray-methylcobalamin is the active ingredient.

Can get it Amazon or Holland and Barrett.

I wouldn't bother with the tablets at all, as I don't think you can absorb them through your stomach, if you have a B12 deficiency problem.

Don't bother with patches either. Just get the stuff you spray under the tongue.

mandy72 profile image
mandy72 in reply to ROMM53

ok thanks ill get hunting for a bargain

Clutter profile image
Clutter in reply to ROMM53

Rach67, sublingual lozenges bypass the gut and are delivered into the bloodstream via saliva/mucus when dissolved under the tongue/lip.

ROMM53 profile image
ROMM53 in reply to Clutter

I don't find they do dissolve under the tongue though, even though they're marketed as sub-lingual.

PinkNinja profile image
PinkNinja in reply to ROMM53

The Jarrows ones dissolve under the tongue for me. They take a while though :)

Clutter profile image
Clutter in reply to mandy72

Mandy, I think cyanocobalamin is widely used in the USA. It isn't poisonous but methlylcobalamin sublingual lozenges may be better absorbed. They should be held under the tongue or top lip to dissolve and bypass he gut by being absorbed via mucus/saliva into the bloodstream. Spray and patches are alternative methods. I liked the apricot taste of the spray so well I was getting through the spray too quickly and switched to Jarrows Formula lozenges which also taste nice and lemony.

Feeling anxious and paranoid is likely to be due to your high TSH. As you are able to tolerate more NDT and bring down your TSH the feelings should diminish.

mandy72 profile image
mandy72 in reply to Clutter

i hope so, ive been feeling lie this for way too long now, just want to feel human again and get off the settee and out of the house

ROMM53 profile image
ROMM53

You may need to supplement your iron too, if your ferritin levels are lower than halfway up the range. But get it tested first. If your ferritin levels are low, it's very difficult to increase your thyroid meds.

mandy72 profile image
mandy72 in reply to ROMM53

this could explain lots then, should i start iron now or wait until after blood test?

ROMM53 profile image
ROMM53

No harm in taking 14mg daily iron supplement until you have your Iron Studies done

mandy72 profile image
mandy72 in reply to ROMM53

i just have to figure a good time to take 4 hours from NDT

ritz profile image
ritz

when I increase ntd I do it very slowly once a week for a week twice a week for 2 weeks 3 times a week for 4 or more weeks etc and stick for a while if I get increased plus rate - over 70.

I am going up from 3g to 31/2g and started increasing very slowly in January. I also take mine at night, 2g when I go to bed then another 1 1/2 when I wake in the night3 to 4ish.

in the day I tale iron vit d with calcium selenium and b12 so I take them hours apart.

mandy72 profile image
mandy72 in reply to ritz

ive added the half a 1/4 today and so far ive been ok so fingers crossed i can continue and hopefully start to feel better

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