Help with puzzle ? T4 only meds ? Feel hyper - Thyroid UK

Thyroid UK

141,245 members166,495 posts

Help with puzzle ? T4 only meds ? Feel hyper

Cg430 profile image
24 Replies

y help anyone can provide not sure if I should be increasing or decreasing synthroid t4 only 25 mg for abt 14 months ty . I’ve always had more hyper symptoms but I am hypo w hashimotos ? Wake every 2 hours get back to sleep but then up again after 2 hours . Eye twitching nerve pain even in eyes . Latest labs tsh 3.4

Ft4 0.92

Antibiodies over 1k

Hopef this is correct area first posting ty !

Written by
Cg430 profile image
Cg430
To view profiles and participate in discussions please or .
Read more about...
24 Replies
greygoose profile image
greygoose

Can you give us a range for that T4, please? The results mean nothing without the ranges, which vary from lab to lab. :)

Cg430 profile image
Cg430 in reply togreygoose

Hi gg yes 0.8-1.8 for free t 4

greygoose profile image
greygoose in reply toCg430

So, that's well under mid-range. And your TSH is too high. When on thyroid hormone replacement, it should be 1 or under. So, you are actually under-medicated, and should increase your levo.

Be careful with symptoms, because so many of them can be both hyper and hypo. But, your sleep problems sound more like a cortisol problem. Have you had your cortisol tested?

On, the other hand, you do have Hashi's, so it's possible to have both hypo and hyper symptoms at the same time - plus your levels can sometimes shoot up, after an immune system attack on the thyroid, so that could give you hyper symptoms. But, according to those result, you are hypo at the moment. :)

Cg430 profile image
Cg430 in reply togreygoose

Ty gg . I hv so many more details to list I hv a neck rash feel enlarged neck . A reoccurrence if bc this past year after mastectomy 10yrs ago. Terrible breast pain like shooting nerve pain I hv a lot of that thru out my body . I was tested a few years ago for cortisol was off but not sure what it was . The drs tell me menopause . Tell me oh u think abt it too much try an antidepressant which I refused My prolactin is low half of what it should be . I’ve been told I hv start of fibromyalgia so many diff things yet no relief . One Endo even wanted to treat me w anti thyroid medication for my symptoms racing heart rate tremors shakiness Eye twitching and pain pains in my head all of it gets me into a very anxiety driven mode at one point I was having daily panic attacks all abt my health and pains thinking I was going to. Just drop d””” and then there is the sleeping issue what advice can you offer me what did you mean by be careful with the symptoms is there anyway I could have Hashimoto’s and be hyper at this point everyone says go on how you feel not by your labs thanks again

greygoose profile image
greygoose in reply toCg430

Yes, to a certain extent you should go by how you feel - and at the moment you feel bad. What I meant is that you can't go by symptoms along because so many of them can be both hypo and hyper symptoms. But, you can't be 'hyper' at the moment with those labs. Those labs are saying you are hypo and need an increase in dose.

Plus, a tiny dose like 25 mcg can make you feel worse rather than better. it isn't even a starter dose for most people.

As you say, you do have a lot going on, but being low in thyroid hormones won't help.

Can't you remember if your cortisol was high or low? Did you have a saliva test or a blood test for it?

Cg430 profile image
Cg430 in reply togreygoose

I did increase to tab and a half so 37 at one point and having a lot of pains in arms . Maybe I didn’t give it enough of time . I went back to 25 . Do u know much abt prolactin ? . Anyhow the saliva one was I believe high in morn then normal then low low later in day like a crash . Blood also but I’m not sure what it was I think low in morn ? I’m always afraid more is going on not thyroid related so never sure what I should do. And drs no help. I wake at 4-5 am and on overdrive then go go all day tired around 3 and sleepy early in bed by 9 waking every 2 hours ? Again a confusing puzzle ?

greygoose profile image
greygoose in reply toCg430

I take it the blood and the saliva tests weren't done at the same time? Any chance you can get hold of the actual results? Or could you get it tested again?

Have you had your nutrients tested? Vit D, vit B12, folate and ferritin?

Cg430 profile image
Cg430 in reply togreygoose

No they were probably a year or more apart . I can hv them redone what is the treatment for that a cortisol problem ? My Vit D was 19 I started supplementing went up to 35 at highest . Others no. B-12 was normal. I’m due for retesting . Soon what should I check. ? I also had muscle twitching which has gotten better leg buzzing . I think some improvement since the start of synthroid . But want to feel normal again ty again

greygoose profile image
greygoose in reply toCg430

OK, so they really need to be done again. It depends what the cortisol problem is, what treatment you need.

Your vit D is probably too low at 35, but it depends on the range. Are you still supplementing? There's no such thing as 'normal', what were the actual numbers for B12?

silverfox7 profile image
silverfox7

Are you still taking Vit D. When we find we are low and need to supplement then we are probably looking at taking things for life though sometimes when optimal we may find a lower dose to keep us there. Glad you have found us and for more information look at the Thyroid U.K. SIte who run this forum. They have lots of information to help us. Shout out if anything you don't understand.

Cg430 profile image
Cg430 in reply tosilverfox7

Ty so much

Your FT4 is quite low in range. Since you said you feel both hypo and hyper, it would be good to check where your FT3 is too, since FT4 only doesn't say much as you could be sky-rocketing on FT3 and getting low symptoms from low FT4 and high from high FT3 (I had that). What were your results before taking 25 mcg of Levo? Have you felt any different back then?

Cg430 profile image
Cg430 in reply to

Sorry those were my results before tsh 3.4 ft4 .093 . Just did bloodwork yesterday I will post when I hv them back . How did u feel when u went thru that low ft4 high ft3 ty!

in reply toCg430

I felt out of balance, with some hyper symptoms, some hypo.

With low t4 I have nightmares, wake up frequently at night too, running on adrenaline the next day, crying etc. Everyone is different in terms of symptoms, but what you feel is too much hormone could be related to not enough or ...getting used to the new dose. It's complicated

greygoose profile image
greygoose

Cg430, I'm taking this question back to your thread, because it's not fair to squat other people's threads. :) So…

Back to original question of if I’m hyper bc of symptoms . Noticed my neck is bigger for sure . Still on 25 how can that be isn’t that also. A hyper symptoms and cause ? Dr made me feel just my neck but significantly larger . I asked can’t it be a goiter and she laughed ? This is all so confusing to me I do feel mad sometimes

I'm really not sure what you're asking, here. You can't be 'hyper because of symptoms'. Hyper means that you have too much thyroid hormone in your blood. And you don't. So, you're not hyper. In any case, you have Hashi's, and with Hashi's, we can have hyper and hypo symptoms at the same time.

"Still on 25 how can that be isn’t that also. A hyper symptoms and cause ?"

I have no idea what you mean, there. How can what be?

I don't know why your doctor laughed at you, but when they laugh like that, I often suspect they're just covering up their embarrassement because they can't answer the question. I've got quite good, now at spotting when they're covering up, and when they really know what they're talking about!

Of course, I can't comment on your enlarged neck, because I haven't seen it. Is it a lump that sticks out? Or just an over-all enlargement? Either way, it could be a goitre. But, a goitre is just an enlarged thyroid. People with Hashi's often do get goitres. But, one doctor I saw actually had no idea what a goitre was, so it wouldn't surprise me if your GP didn't know, either. And that's why she laughed. Yes, it is annoying, and confusing, and b****y rude! But, that's the way doctors are. They think they are superior and can treat people the way they like, and don't need to be polite to a mere patient… But, don't get me started on doctors! lol

Cg430 profile image
Cg430 in reply togreygoose

Oh . Sorry for squatting didn’t realize...... idk what I meant either actually . I keep feeling I may be hyper and when that one dr said he wanted to try me on hyper med I thought oh wow maybe I am ...... Again confusing to me .... feel lost thx for your replies . Def rude and more ! Hope I can laugh abt it all soon . Not yet . Too worried anxious all of the above ty again gg ! Ps I do feel endos only are educated in and want to treat diabetes at least what I’ve encountered !

greygoose profile image
greygoose in reply toCg430

It could very well be that at the time that doctor said that, you were having a Hashi's 'hyper' swing. And, they just don't know how it works! But, you are not hyper as such. You might have high FT4/3 from time to time, but that still doesn't make you hyper when you have Hashi's. That doctor didn't really know what he was talking about.

You will laugh about it, one day, when you're feeling better. But most doctors don't seem to be very nice people. I've met a few socially, friends of friends, but I would have wanted to hang out with any of them, for very long. Not nice at all! And, you're right about them only being interested in diabetes. One of them once said - can't remember who - that diabetes is 'sexy', thyroid isn't. Well, all I can say is: whatever turns you on!

Cg430 profile image
Cg430 in reply togreygoose

Hi again gg finally got my bloodwork done yesterday I asked for folate ferritin and prolactin as mine has been very low in past . Besides freet4 and freet3 ....I’ll post next week can’t wait to see all the results . Hope all r feeling ok !

greygoose profile image
greygoose in reply toCg430

Do post them in a new post, won't you. :)

Cg430 profile image
Cg430 in reply togreygoose

Yes I will when they’re in hand next week ty

Cg430 profile image
Cg430 in reply togreygoose

I posted the new results new post ty

Cg430 profile image
Cg430

Omg gg that sure did give me a real lol ! Thx they r such idiots !

SlowDragon profile image
SlowDragonAdministrator

Presumably you mean you are only on 25mcg (half the standard starter dose)

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood

Cg430 profile image
Cg430 in reply toSlowDragon

Ty I posted new results

Not what you're looking for?

You may also like...

Joint pain with T4 meds

I know that T4 and stressed adrenals are not a good match, but what exactly causes the crazy joint...

Hyper with normal T4

I was diagnosed with unstable thyroid about 10 years ago. I went through a brief stage of weight...

Help with T4 and T3

Hi everyone, I have been taken 75mcg T4 at bedtime. I swapped to bedtime years ago as I felt...

T4, T4/T3 and T3 only do not help.

Hello everyone, I haven't been online for a long time. I am still struggling to manage my...

help with hyper / hypothyroidism

Hi everyone, I'd really appreciate some advice. After getting over shingles and I believe Covid by...
dizzy864 profile image

Moderation team

See all
RedApple profile image
RedAppleAdministrator
PurpleNails profile image
PurpleNailsAdministrator
helvella profile image
helvellaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.