I really don’t understand this condition. - Thyroid UK

Thyroid UK

137,149 members160,828 posts

I really don’t understand this condition.

Dewberry1 profile image
21 Replies

Hi

Hypothyroid and extremely frustrated. I can’t remember the last day I have felt well.

But no two days are the same and it feels like when one symptom goes another comes.

Also how are we supposed to know if symtoms are causing by being hypo or hyper when they overlap so much? I’ve been getting palpitations over the last few days . Its a sign of being hyper but I have read it can also happen when hypo.

Am just struggling to understand as some days I feel so unwell that I need a dose increase. And somedays the symptoms make me feel if my dose is to high.

Sorry everyone for the rant I am just so fed up. I am only 27 and becoming hypo has dramatically impacted my life in the past year.

Written by
Dewberry1 profile image
Dewberry1
To view profiles and participate in discussions please or .
21 Replies
ShinyB profile image
ShinyB

Hi, yes I know the feeling! I'm just wondering if you have looked in to your adrenals and cortisol? They can impact on how you respond to your thyroid meds.

Taking your resting pulse and temperature is a useful guide too. If your resting pulse or temp gets too high it indicates you're over-medicated. Do you now how to do this?

Do you have hashimoto's/antibodies? This can cause sudden release of thyroid hormone which I've read can temporarily make you feel a bit hyper, but you're still hypothyroid.

YOu don't say what thyroid meds you're taking? Sometimes on levothyroxine it's possible to feel worse if your body is not able to convert the T4 in levo to T3. In this scenario it can convert it instead to reverse T3.

I'm currently getting my progesterone and oestrogen checked out as apparently imbalances there can cause problems.

Lots of pieces of a massive jigsaw puzzle....

Ari3 profile image
Ari3 in reply to ShinyB

Shiny u was mentioning about progesterone and oestrogen to be checked out.How did u realise they have to be checked out ?If thyroid would be optimised won’t all hormones go in harmony or we have treat every hormone separate?

Regards

ShinyB profile image
ShinyB in reply to Ari3

Hi Ari, personally it's all felt like stumbling along in the dark and guesswork! I had a saliva test done via a nutrition therapist which said I was low in oestrogen and all my hormones were too high or too low, even allowing for me being post-menopausal.

I then got chatting to someone on a facebook thyroid page, who said this could cause problems.

My understanding is that it's all a bit chicken and egg... out of balance hormones can get in the way of thyroid hormones working well, and thyroid hormones can help balance out the other hormones.

Sorry, I know that's not a simple clear cut answer, but I honestly don't think much about this thyroid journey is simple and clear cut. Apart from for the very lucky people who respond very well to thyroxine from the outset.

Ari3 profile image
Ari3 in reply to ShinyB

Have u read a book Anthony William called Thyroid healing? I suggest you to buy that book it will open ur eyes ...i was shocked what I read ....I have lots of books I try to order and study as much as I can about this illness.im on t3 second day now and once I take my pill I feel relieve after within 2 hrs is this a good sign...like more energy and relaxed feeling.I know 5mcg is a small started dose but because iam introducing it slowly to my body I think should be fine for couple of days and than I can increase to 10mcg per day.I know it’s a long journey but well worth for feeling good.Have u done any changes in ur diet ? When do u take ur supplements if any and how do u take ur t3-twice a day?

ShinyB profile image
ShinyB in reply to Ari3

Thanks for the book suggestion :) I'm still trying to plough my way through the other thyroid books I've bought but will bear this one in mind too.

May I make a comment? I'm happy to answer your questions, but my brain is not at its best at the moment - brain fog, ugh - and also my brain short circuits when I see a big paragraph of solid text.. Would you mind putting in some paragraph breaks so it's easier for me to read....? :)

That's great that you're feeling an affect already. Brilliant! :D How exciting!

I haven't really made any dietary changes as I'd already started on that path prior to knowing for sure that I had a thyroid problem. The main changes I made back then were to eat more fat including saturated fat and to eat less carbohydrate, especially sugar, flour, grains. This helped me lose weight and also helped with my lipid profile. I've since added in a bit more carbohydrate as it's meant to help with thyroid function. But I still, personally, steer clear of grains.

At the moment I take my T3 all in one go, at night on an empty stomach. Some people say it's best taken in divided doses, some say take it one go. I guess both are worth trying and see which works best for you.

I take supplements with my breakfast, with lunch, and with evening meal. I rattle lol.

Good luck :)

Dee8686 profile image
Dee8686 in reply to ShinyB

My endo has just told me to have hormones checked. It’s like a dancing act he said. If one hormones is out, they’re all out it upsets the whole balance.

ShinyB profile image
ShinyB in reply to Dee8686

Sounds like you have a good endo. I'm rather envious! Good luck :)

silverfox7 profile image
silverfox7

Can you post your latest results with their ranges please. We may be able to help more if we see the results. It may well be something simple like not being on a high enough dose. Please let us know what your current dose is and how long you have been taking it.

silverfox7 profile image
silverfox7

Have a look as well at the Thyroid U.K. Site. They run this forum and their site has much useful information which your GP won't have told you. You may be, through no fault of your own, be taking other meds too close to your thyroid meds or eating too soon after your medication etc.

Dewberry1 profile image
Dewberry1

i was taking 75mcg of levothryroxine

a blood test end of feb showed tsh 2.2 and t4 23

I felt unwell still and doctor allowed me to increase my dose to 100mcg. I did this slowly by alternate days and now taking this dose daily.

Been feeling very poorly since friday. Exhausted, dizzy,m chest is feeling funny , maybe palpitation?

SilverAvocado profile image
SilverAvocado in reply to Dewberry1

Hi Dewberry1. You haven't given ranges, but I suspect the top of the range for freeT4 is about 22?

So before your dose increase you already had too much T4 in your system.

We really need freeT3 to get a full picture here, but to make another guess I would say it's low. You're TSH is still suspiciously high, showing your body wants more hormone. But we can see it doesn't need more T4!

Probably this is a situation where you'd benefit from T3. Your body is probably struggling to convert the T4 you're taking as Levothyroxine into T3, the active hormone your body needs.

Dewberry1 profile image
Dewberry1 in reply to SilverAvocado

Hi silver

Thanks for your reply I feel what your saying may be along the right lines.

I will push for a t3 test as I have not had one done. As you said tsh is still high for a high t4.

SilverAvocado profile image
SilverAvocado in reply to Dewberry1

I had a friend with a pattern like yours. Doctors that looked at TSH only had been increasing his Levo for years. Then he got a string of doctors who looked at TSH and freeT4, and they lowered him each time until he got very ill!

Diogenes says many people need to push their freeT4 over range to get enough T3 in their system.

Your freeT4 is already over range, and it will be even more over with your recent increase. Your TSH is pretty high for such a high freeT4. A good idea to get hold of freeT3, as all I've said is only true if you have the most common patterns, it's always possible something more unusual is going on, as we're all different.

You may struggle to get this test from your GP, as they tend to know nothing at all AND their hands are tied (altho sounds like your current GP is dosing on symptoms, so they are one of the good ones!). If you can't get them consider Medichecks or BlueHorizon. These days the NHS is so stingy with T3 :( It's likely you will have to self medicate in the end, anyway.

The other thing about your strange set of symptoms is that you likely have a few vitamin deficiencies or adrenal problems. The first step is to get vit B12, vit D, folate and ferritin tested. I was just tidying some notes and found my friend's complete results from 2015, and was sad to see he had TWO significant deficiencies. I've tried to help him get these sorted, but when he had these tests 3 years ago I didn't know as much as I do now, and didn't realise the importance! These vitamins are v important, and can cause symptoms, too.

Dewberry1 profile image
Dewberry1 in reply to SilverAvocado

Thank you so much for the advice.

Unfortunately the dr who increased my dose was a locum one, he was brilliant! i have an appointment with my gp next week so wil discuss all this with him.

My vitamins aren’t great have been supplementing but need a test to see how I am getting on .

I have been looking into medichecks as nhs are stingy enough with a normal blood test let alone t3😂

SilverAvocado profile image
SilverAvocado in reply to Dewberry1

Good luck with the GP!

You will need it, but hopefully you will get hold of a few of these tests :)

LAHs profile image
LAHs in reply to SilverAvocado

Agree with you and Diogenes about pushing your T4 over range to generate sufficient T3, that is what I had to do when I took Levo. That was the only time I felt really fit and healthy on Levo. And, of course, my Endo told me to lower my dose because it suppressed my TSH! I quickly fired my Endo after that, her blood count numbers were more important to her than my health.

SilverAvocado profile image
SilverAvocado in reply to LAHs

Yea, I think lots of people have to do it. There is some concern that having a high freeT4 in itself can be bad for you, but I'm not sure how clear that is.

keeponbelieving profile image
keeponbelieving

Hi there. This happened to me for years. I kid you not. GP kept moving up and down between 75 and 100. But nothing changed until I checked my T3 and RT3. Yes my TSH was " normal " so they could not understand what I was going through.

Eventually of course private testing revealed I had really low T3. I was not converting the levothyroxine.

Now I am on T3 only. Do you have T3 results ?

Plus adrenals must be able to cope. Keep on trying - you will get there.

Dewberry1 profile image
Dewberry1 in reply to keeponbelieving

Hi

Thanks for the encouragement it is appreciated 🙂. I will being up the t3 and hopefully get a better picture of things

Dewberry1 profile image
Dewberry1

Thanks everyone. I’ve actually gone to a&e as palpitations are getting bad. Hopefully will all be ok

Espisnowwoman profile image
Espisnowwoman

For ur heart u should be on a beta blocker regular thyroid meds wont take care of the heart. I have the same heart issue. Iam hyper/graves and my endo told me that heart issues likes urs is caused from graves.

You may also like...

Help I don’t understand

please I don’t understand please explain why my T3 dropped

the T3 ? Now present day I am now on 30mcg T3 125mcg t4 My last test Also my b12 is double....

Trying to learn about my hypothyroid condition and getting upset that i dont understand it

sore muscles and what else goes hand in hand with hypothyroidism and I'm feeling overwhelmed and no...

Latest blood test results-don’t understand RT3

peoples views on my latest blood tests. I will also post my last results from January of this year...

I Really Don't Understand My GP

I'll take it up with them on Friday when I have my B12 jab. I also want them to check vitamin D as...