Headaches & adjusting T3 only: Thank you all... - Thyroid UK

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Headaches & adjusting T3 only

beaubeau1121 profile image
27 Replies

Thank you all!

Have been feeling great on T3 only… 50mcg daily ( dosed 20mcg, 20mcg & 10mcg)

However, lately dull headaches atypical to me. …. especially in am. Wondering if time to boost am dose to 25 mcg… ? or evening?

I know I have read that many often adjust!l

Just when I was coasting on 50mcg a day merrily along…. now the headaches

Will do bloodwork but TSH will be low…& endo will say “ I told you so”… & throw levothyroxine in my face, again… & blame all on liothyronine!

Any suggestions? Or, experience you might share on the balancing act of T3 only???!

Always so grateful for your thoughts!

Best…

.

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27 Replies
DippyDame profile image
DippyDame

On T3-only your TSH will be low....mine is suppressed as is FT4 and FT3 is high.Low TSH is the pituitary's response to high T3 levels

It's what happens and medics should know this.

However, I have a form of Thyroid Hormone Resistance and need a supraphysiological dose so the impact is greater.

I've had T3 blamed for all sorts of things...

I take my T3 in a single dose at bedtime....splitting didn't work for me/ with RTH.

Might be worth trying.

I self medicate and my GP thought I was killing myself by taking T3-only...she understands now and leaves me to it.

You say, "I know I have read that many often adjust!l"

Not sure I understand!

Do you mean you have recently adjusted your T3 dose?

If so, by how much?

Increase to 50mcg from ?mcg?

How long since last increase?

Other than headaches do you have any symptoms of undermedication?

Do you check your basal temp and resting heart rate daily/frequently?

When on higher doses of T3 we need to monitor and dose the old way....signs and symptoms/clinical evaluation. On lower doses we need to ensure our FT3 is in range or close to it.

Just a few thoughts...

DD

beaubeau1121 profile image
beaubeau1121 in reply toDippyDame

Thank you!I lowered from 60mcg… about 2months ago… all had been well. Maybe taking zithromax for weeks has effected thyroid levels… hard to say. At first… I thought it was still sinus issues..

Never exact whether too much or too little thyroid med…first thought … as the headache is in am…. I would increase my bedtime dose & lower mid day( 2nd dose of the day)…. & stay at 50mcg… rather than raise/lower daily dose.

Appreciate your prompt & thoughtful reply!

DippyDame profile image
DippyDame in reply tobeaubeau1121

Did you lower your dose because you felt overmedicated or because you were advised to do so by a medic?

60mcg is a big dose but having said that I reached 212.5mcg before I felt overmedicated so I had no doubt then that RTH is my problem. Having "saturated my cells" I now find 82.5 mcg works for me.

If zithromax was for sinus problems you may have been treating the wrong thing That is, the effect (sunus issues) rather than the cause (thyroid issues)

We are all very different with different needs!

Drug Bank shows no T3/ zithromax interactions. Just don't take them at the same time to be sure!

I had dreadful sinus issues when I trialed lower doses of T3, it cleared when I reached the correct dose for me.

Unfortunately trial and error is the only way to find your therapeutic T3 dose....and it takes a very long time, and is tedious!! Be prepared!

beaubeau1121 profile image
beaubeau1121 in reply toDippyDame

Sounds like me!!!Dr had me at a dreadful 25mcg of levo & 40 mcg of liothyronine! had bad reaction when added Levo & reduced lio to 40. So… switched to 60 now 50 mcg of lio! Will try 45!!! So grateful!!!

puffyface profile image
puffyface in reply toDippyDame

I was just reading your reply to the question of T3 dose and headaches, where ask if the person checks basal temp and resting heart rate frequently. Please can you explain why that needs to happen. I am on 50 mcg t3 too, and I think it works for me…although I can never really tell as I have other autoimmune problems. But, sometimes…last night for example, I woke to a very hard, fast heartbeat. On top of that, I feel that I am never able to control whether I am too hot or too cold. I don’t check temperature bbecause any time I have, it’s the same at 36.4 ish….and the feeling hot or cold makes no difference. I was just really interested in your reply and would be grateful for your thought. 😊

DippyDame profile image
DippyDame in reply topuffyface

Once we reach a large dose of T3 ( me 87.5mcg) monitoring the dose by labs is not possible ( TSH and FT4 will be suppressed and FT3 ( depending on dose) will be over range. As a result we rely on good old fashioned clinical evaluation....signs and symptoms...to ensure that we are not overmedicated.

On lower doses FT3 labs will indicate overmedication so the aim is to stay within the reference range....and to feel well.

Blood tests were not really designed for T3-only

Normal resting heart rate can range anywhere between 60 -100 beats per minute. Above this, in general terms, we are advised to seek medical attention.

In T3 terms the assumption is that we are overmedicated.

It is important therefore to monitor heart rate ....high heart rate indicates overmedication.

Basal temp is slightly more controversial, like you my temp is always on the low side which may suggest undermedication... but a high temp can also indicate overmedication. We all differ!

A quick and easy way to check for overmedication is to look for tremors....

stretch your arms out in front of you palms down and side by side,, lay a sheet of paper over the backs of your hands and it should lie still. Tremors indicate overmedication

I usually check my oxygen level too just for general health purposes and Icheck my blood pressure once a week.

The important thing is to listen to your body, it will tell you if something needs attention.

Have you now optimised all the relevant nutrients?

Have you tried a gluten free for Hashi's?

How do you take your T3....split or single dose? I take my full dose at bedtime, splitting didn't work for me. But, we are all different

Hard, fast, heart rate during the night....is this a regular occurance or accompanied by an irregular heartbeat? May be an idea to check with GP

Occasional episodes however aren't usually a sign of anything serious....

Stress, coffee

This article may be of interest

thyroidpatients.ca/2019/08/...

Sorry didn't intend this to a long winded reply, I'm guilty of ranting! Hope something resonates.

Best...

DD

puffyface profile image
puffyface in reply toDippyDame

That's not a rant....it's incredibly helpful. I generally split into 2 doses, but endo thinks it should be 20/10/20. I forget if I try to do that! I did try gluten free, but I didn't notice much change. Unfortunately I also have sjogrens/lupus...and it's getting worse...so I think that I'm going to try eat gluten free again....just to see if I notice any difference. Happy Sunday and thank you for your reply. 😊

beaubeau1121 profile image
beaubeau1121 in reply topuffyface

I agree…. very helpful! Have you ever had headaches when adjusting your T3 daily dosage? Just curious as suddenly I do!

in reply toDippyDame

I can have my FT3 as high as 11 and have absolutely no signs of over medication.

DippyDame profile image
DippyDame in reply to

How much T3 are you taking...that determines how you monitor T3 dosing/level?

When on a supraphysiological dose we have to monitor by clinical evaluation rather than by numbers. There are no tests for T3 monotherapy at that level.

My FT3 is high too - with suppressed TSH and FT4. After introducing T3-only I slowly reached 212.5mcg and had no signs of overmedication.... until I did!

I had reached a "tipping point" and knew I had to reduce my dose, I now manage on 87.5mcg, with no signs of overmedication, as more of the hormone has slowly reached the nuclei of the cells.

Those of us with a form of thyroid hormone resistance/cellular hypothyroidism will be able to tolerate larger doses of T3 than other hypothyroid patients.

Hope you are keeping well

beaubeau1121 profile image
beaubeau1121 in reply toDippyDame

Thank you!At 50 mcg daily now…

Suddenly after routine teeth cleaning… awakened w a headache… that persists.

Often headaches are hormone related… & maybe I hit a “ tipping point” w liothyronine after lowering from 60 to 50 ….. 6 weeks ago….

so will try lowering to 45/40mcg liothyronine. in order to address the headache. Or, try Cytomel! All had been wonderful until…morning after teeth cleaning. Even at 60mcg… I never had persistent headache but reduced regardless! Could i need mo? Such a dilemma as all symptoms & quality of life driven with the new headache…as you said…. no test will add value! The endo will just put me on T4 only…. again … & 125mcg was too much of levothyroxine.

Best & thxxx

tattybogle profile image
tattybogle in reply tobeaubeau1121

do you mean teeth cleaning as in 'at the dentist' ? just a thought .... but if i have a tooth problem ~ instead of toothache i now get a particular sort of headache .. like i'm being stabbed in the eye with an icy shard...

is it possible the tooth cleaning increased sensitivity of an undiscovered tooth/nerve problem ?

Probably a long shot .. just thought i'd mention it

beaubeau1121 profile image
beaubeau1121 in reply totattybogle

I keep wondering the same..,Will call dentist in am..,

Thx

in reply toDippyDame

50 mcg. I have had higher doses and although I had no symptoms as such I had to eat for England to keep up my weight. No other symptoms.

I’m well DD and hope you are too 💗💗

DippyDame profile image
DippyDame in reply to

Glad you're doing well.

Take care

DDx

shaws profile image
shawsAdministrator

25mcg of T3 is equal - in its effect - to 100mcg of T4. So maybe your dose is a bit high for you. I used to take 50mcg but am back to 25mcg once daily. I also feel well and have no symptoms.

beaubeau1121 profile image
beaubeau1121 in reply toshaws

Thank you! Will try 45!

in reply tobeaubeau1121

My monster headaches are when My FT4 is too high

We are all different

beaubeau1121 profile image
beaubeau1121 in reply to

Me too! First time w T3 only!

in reply tobeaubeau1121

You poor thing ☹️

beaubeau1121 profile image
beaubeau1121 in reply to

You are so kind!Thx so much!

shaws profile image
shawsAdministrator in reply tobeaubeau1121

Always change dose gradually and allow a decent number of days on the 'change' before adjusting, unless you have severe palpitations.

Dancing_dragonfly profile image
Dancing_dragonfly in reply toshaws

I was told on STTM IO group that 25 mcg of T3=60 mg (1 grain) of natural desiccated thyroid, like Armour. Wondering if that is correct?

beaubeau1121 profile image
beaubeau1121 in reply toDancing_dragonfly

Wow! Interesting! Only heard of equivalence to levothyroxine/T4!And… 25mcg of liothyronine equivalent to 100mcg of levo…. however…many folks find that is not precisely correct… so back to trial n error w T3 & thyroid meds!

shaws profile image
shawsAdministrator in reply tobeaubeau1121

This is a response from Dr John Lowe, scientist/researcher/doctor and expert on the use of T3:-

" Unless a person takes a daily dose of T3 that is too high for him or her, then its highly unlikely that the T3 will cause any heart problems. The same is true, however, of T4.

Keep in mind that T4 is not a hormone; its a prohormone and is metabolically inert until its converted to T3. So, if it were true that taking too much T3 causes heart problems, the same would be true of taking too much T4, it that some of it will be converted to T3.

The only person for whom a small dose of T3 would be harmful would be someone with an extremely fragile heart. Among ambulatory people, this is extremely rare.

When a person begins to take an effective dose of T3, his or her previously understimulated heart beats more forcibly. The person isnt used to feeling the vibrations produced by the more forceful projection of blood out of the left large heart chamber (ventricle) against the inner wall of the aorta. Because of this, the person perceives the pounding. Many people misinterpret the pounding as overstimulation of the heart. In fact, its just a normal occurrence, as in people who havent been hypothyroid. Perception of the pounding is usually enhanced if the person lies on a bed. The bed acts as a sounding board, and this amplifies the perception of pounding and may frighten the person. But if the person understands that the pounding is a harmless phenomenon, he or she will become desensitized to it after a week or two. The pounding from vibrations continue, but the person then isnt aware of it.

Of course, if the heart beats too rapidly, say more than 90-to-100 beats per minute at rest, there are possible explanations other than too much T3. If the persons dose is below, say, 90-to-100 mcg per day, chances are the problem is something related to over-activity of the sympathetic nervous system. Low or high blood sugar is a common cause of the over-activity. B complex vitamin deficiencies, such as a B1 and B12, may also be the cause of the rapid heart rate. When such other factors are interacting with T3 to cause a rapid heart rate, the proper way to relieve the problem isnt to stop the T3 altogether. Its proper to reduce the dose low enough to relieve the rapid heart rate, and then identify and correct the other problem. Then the person should be able to use a dose of T3 high enough to be fully effective without causing the heart to beat too fast.

shaws profile image
shawsAdministrator in reply toDancing_dragonfly

STTM is a USA company.

This is from UK British Thyroid Association.-

"The BNF states that 20–25 micrograms of liothyronine is equivalent to 100

micrograms of levothyroxine.

cambridgeshireandpeterborou...

As a matter of fact, Natural Dessicated Thyroid Hormones were the only life-savers from 1892 - no blood tests then and all the emphasis was upon the patient's clinical symptoms and they were prescribed NDTs. which was gradually increased until symptoms resolved.

Unfortunatelyl it was withdrawn some months ago who we'd imagine were more knowledgeable - unfortunately it appears not to be the case.

NDTs are made from animals' thyroid glands.

Let our body decide what dose or thyroid hormones enables us to feel well and be symptom-free again. In that case we feel completely normal, with no symptoms.

Dancing_dragonfly profile image
Dancing_dragonfly in reply toshaws

Good to know! I am aware of the history of NDTs, and feel it s a shame that many people are kept suffering and given other meds to treat symptoms that are simply related to inability to convert levothyroxine to T3.

I was one of those people during my 30’s and early 40’s! It is only NOW, at 61, do I feel I am about to be optimal!

I guess my info was only relevant to T3 …>NDT equality.

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