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Thyroid Disorders Community
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Avatar universal

Self medicate

My last levels:

TSH 25
FT4 .99 (0.71 - 1.40)
FT3 2.6 (2.0 - 3.5)

Those levels were after 8 weeks on 88mcg.. My doc increased my dosage to 100mcg and after 3 weeks on the 100mcg i started having a lot of hyper symptoms.. He decreased me back to 88mcg without doing blood work and said if i'm still hypo in 8 weeks then he will alternate the 88 and 100mcg dosages..

My question:
Should i just go ahead and alternate on my own since i already know the 88mcg is not enough? Or Should i do what my doc says stick with the 88mcg for 8 weeks and see where my labs are?
19 Responses
798555 tn?1292791151
That's a personal decision we all face when increasing med doses, only we know how we feel.

The down side of increasing is if you run out of the amount prescribed. Then the doctor finds out what you did anyway. My doctor does not question this with me anymore, but used to. I'v 'blended' many times for an easier dose change. I can also call for a lab test if I think I need one.

With any T3 meds, (fast in/out results) you can feel a daily difference and can control it actually easier, contrary to what some people that have not tried it seem to think. T4 med only, is trickier, as it takes longer to feel it and longer to get out of the system. You can take too much and not notice 2 days later, and it could last almost a week.

If you decide to proceed, its best to proceed with caution.
Avatar universal
yeah.. I feel like i'm leaking hormone because i'm having a lot of hyper symptoms and have been since Christmas, Also feel a slight goiter again.. ughh.. I think i'm "hyper" symptoms but "hypo" blood work "if they were to check it" So i think i'm going to go back down to the 88mcg daily "even tho it wasn't enough before" at least until this "attack" stops or whatever it is.. and then get my levels checked on it again after 6 weeks.. It's probably best to do as directed by the doc that way if anything happens i can say i was at least following doc orders..

I have had VERY high antibodies for the last few months because of post partum thyroiditis ughh.. I was hoping they settled down by now but i guess not.. That or my thyroid is sputtering in and out.. I wish it would just die already lol..  
798555 tn?1292791151
There is a lot more of this thyroid swelling, hyper / hypo flopping going on this forum during the holiday season, is there a connection?

** "Hyper is freaky. Hypo is only freaky when you wake up in front of the boss, or in front of the steering wheel while moving." **
1144849 tn?1395458766
Hi LazyMoose, I see you post a lot on the forum, and you seem pretty wise. I was diagnosed as having "Toxic Multinodular Goiter / Hyperthyroidisum"  having 6 nodules, 3 on each side (you might recall that from one of my posts).  Over the last 4 years or so I gained about 80 pounds and really did not change my diet any, in fact if anything I started to eat less. Also loosing hair, feeling exhausted, foggy memory etc. A lot of those symptoms appear to be more associated with Hypo rather than Hyper I think.

I have been swinging back and forth over this holiday like everyone else seems to be. I have cut my dose of Methimazole in half on my own, and I feel much better since doing so.

My Question is, With TMNG, is it possible that I may have some other underlying disease that actually lead to the nodules, like Graves or Hasimoto's disease? It just seams weird that nodules would appear over time without being part of some other complex of disease.  I guess what I have is called Plumber's disease also.  (labs and Ultrasound report are posted in my journal)

Thanks,

McMillan
798555 tn?1292791151
Well wise by itself is compliment, more so than a wise #$% (what I'm used to).  My posting increases as the temp here decreases, unless the Vikes are winning.

I'm not the nodule expert,  I really hope my nodules (with Hoshi) behave for as long as possible,  they are the more 'regular' type.

How your type of toxic nodules create hormone independent of the thyroid is amassing in an unfortunate way. We are not supposed to have nodules at all, let alone renegade ones that make hormone. And if nodules appear, its usually after a certain time with thyroid autoimmune antibodies.

You do have a complicated issue going on - I very well remember your several postings on your condition. That's a lot of info for you to learn at once, and of course doctors gave limited info, right?

I would have figured that someone asked if you were ever tested for thyroid antibodies? No? Thyroglobulin antibodies (TgAB) and Thyroid Peroxidase antibodies (TPO). If one test is positive then you have antibodies. This is the cause for Graves and Hoshimoto, that increase or decrease hormone production in the thyroid gland. So what you are possibly thinking is, could someone have Hoshi with toxic nodules? You mentioned a more hypO feeling. That would be a tug of war if it existed. I never seen it here. This, you need to discuss with your DOCTOR. Chances are he has not seen this much either, unless hes a specialist with nodules.

So you need to know if you have two things going on at once. If you do, well, its hard to treat two things at once that are intermingled, with out telling what worked for what first.

I can't provide answers, none of us here can. But more questions we ask you , the more you learn for yourself. By the way 'Goiter" (you used that a lot before), is just a description for an, enlarged thyroid gland, can be hyper or hypo in hormone output.  

I hope I cleared some confusion and not added to it! . But if your doctors are only concentrating on the nodules, well, yes, they should look at your thyroid too. This would amaze me if they have not done this yet.

And on your hypo or hyper questions - many similar symptoms. With some exception, usually the end digestion process will be different for each. Hypo - slow, cant go. Hyper, the opposite, you know.......

I hope you (they) figure this out sooner than later.
Avatar universal
I've drank alcohol a little more with the holidays, I wonder if this could be the culprit? It's either that OR i'm still thyroiditis from post-partum.
1144849 tn?1395458766
Hey LazyMoose, Are you a Favre fan ?  

My Doctor did not discuss my results with me at all really. She has a n EMR portal and basically posts the results there and you have to log in and read what she left you in the way of a note.. Which was basically 3 options , Ablation, Surgery or Meds.. but Meds would only be temporary blah blah so she recommended the Ablation.  So it is like pulling teeth to get her to answer any questiosn after that.  I did have oen Antibody that was slightly elevated, I will look at that when I get home because i forgot which one it is. The recent labs are in my Journal. When I get home I will post my October labs too. Maybe there is a pattern with something that I was missing.

Thanks!

McMIllan
393685 tn?1425816122
dpleiman- Your questions on IF antibodies Hashi or Graves could cause nodules? - that answer is yes! Autoimmune disease - regardless are eveil to the body - they are foreign ( even through we are all born with some) and can cause issues if they are left to rage completely out of control.

The body can react or NOT react to these - but if they are not at a remission then we can suffer with additional issue.

Do I agree with you taking alternate additional meds? - No - I really don't and I do not think tweeking this T4 alone is helping either. Take a look at those  latest labs.. They are horrible... That for me would be digging myself out of a trentch a mile deep with thyroid. That TSH - if is being looked at as the major decision for med increases and decreases make "logical medical" sense - but seriously are they really looking at those additional Free labs? - It's totally clear to me that this is just "tests" you are getting done and no one is reacting to how to fix those.

Both those free labs are way off and need tweeking. That Free T3 is so low

( keep in mind when FT3 is low you can "think" your hyper experiencing symptoms- but in the real realm of the disease you are symptomatically hypo)

and you really need to address that level with your doctor. I think keeping you at the .88 T4 is the best thing he did for you and going up to .100 would spiral you off. Instead of adding more T4 - have you considered talking to the doctor about keeping you at .88 and bumping a small amout - VERY small to start- of T3 Cytomel
( maybe .5 - or possibly .10). Adding in a direct T3 can in many cases slow the attack of the autominne antibodies (Hashi) (with some selenium for many) Because you are offereing your thyroid health with the T3 as fight off the bad. If your thyroid is still destructing itself - that process will continue - but the added T3 meds can relieve the sympotms to let you not be in as much of a thyroid crises as you are in. I would prefer to go through the slow death of thyroid - somewhat OK - over the suffering that so many must get through and taking some T3 may help you at least be better than what you are..

McMillinNelson, - you must be in Wisconsin.. aren't you? - or maybe the dreaded Viking's area? - your comment about Brett made me want to post to you. We are CheeseHeads here and have a million of things to talk about Mr. Farve.

Who's in the play offs?? - Bata-Bom - our good ol'e Mr. Rogers and the GB :)

All kidding aside - if your doctor is only available by "note" then something is twisted here. She reccommends ablation - but is not looking at the cause in my opinion. HAve you had the uptake scan for Graves? or the TSI antibody testing. I haven't gone to your journal and have been off the board some recently so I am not familiar with these recent posts. But these - expecially scans can determine if you have HOT nodule growth - vs antibody issues and getting the ablation - just "because" isn't right. Ablation will not end the hyper of hot nodules for many - so killing the gland could be useless. As LazyMoose said - you have a couple of issues that need proper attention before a (message sent to you only) is recommending a permanent destruction prior to proper testing.
Avatar universal
Your TGab is elevated. Many of us Hashis have elevated TPOab, rather than elevated TGab. I'd say you have Hashi, by your TGab results, FT4 results and the nodules. Tsk tsk on the doctor for not running TPOab. I'm sure it will be elevated. My Tgab was lower than yours, in the normal range,  but my TPOab is very high. You only need to have one elevated to have Hashi.

Besides, what else caused all those nodules?

You really need a new doctor who knows how to test, treat and explain to you.

:) Tamra

Avatar universal
8 weeks of 88 is a long time. Can you imagine if that same endo gave that advice to his diabetes patients?

Have you thought about a new endo? How big are those nodules? If they keep causing problems, which they have, then maybe look to surgery. I really think you need a new game plan.

You were diagnosed a while back, and you're still only on 88. I know the nodules get in the way of things, but they might not shrink without enough hormone.

My endo lets me up my meds based on my hypo symptoms: heartrate, BP, constipation, fatigue, basal temp. He says I'm not tethered to him, and I know enough about the disease to know what's best. He also lets me up my meds as soon as 2 weeks. I have some old 50s that I break in half if I need to bump. He also gave me some sample boxes of different strengths. He's truly a progressive endo.

If you read Thyroid Power by the Shames, they up their patients every week until they reach desired frees. Wow!

My last endo was the 8 week endo. Slow and steady and do NOTHING without the labs and her approval.

Any thoughts about a new endo who might try a different treatment plan?

:) Tamra
798555 tn?1292791151
I didnt know you also have noddules, I didnt read it. They can add a lot of mysterious 'fun' to the whole deal. So maybe that why you dont feel hypo with that sky high TSH.

798555 tn?1292791151
"or maybe the dreaded Viking's area?" -  Errrr .. cheeseheads are hardcore, geeze. What can I say. There are two neighbors fences in my town that bud up to each other - one is purple, one in staggard green/yellow, for real. It never ends.
Avatar universal
My last 2 Ultrasounds didn't show any nodules, i'm not sure where that information came from..

This stuff is confusing, i don't know if i should alternate 88 and 100, if i should do the 88.. I'm tempted to completely switch over to Armour or Naturethroid..

RECENT HISTORY:
July - Had baby dropped down to 100mcg from (112mcg "pregnancy dosage")
August - "hyper" labs (dropped me completely off my meds)
September - Severely hypo labs TSH of 102 non exsistent Free's (put on 88mcg)
November - still hypo labs as stated above TSH 25 and low Free's (bumped to 100mcg)
December - "hyper" symptoms doc put me back down to 88mcg based on symptoms with no labs taken..

Right now, i'm not sure where i'm at, but i know i'm tired.. tired... tired.. Constipated, heart palps, insomnia, did i mention tired? ughh..
Avatar universal
Thank you for all the advice, i'm definitely going to be addressing it with my endo very soon... I did have a question about something you said however..

You mentioned that going back to the 88 was probably the best thing and bumping to 100 will spiral me off?? I was wondering what that means exactly?

Thanks again for your help..
798555 tn?1292791151
So you dont have nodules....I was going by the others comments, so thought you did.....

Hypo and hyper share similar symptoms. For a thyroid 'newbie' this can be confusing. So are you sure you have hyper symptoms?  

"Right now, i'm not sure where i'm at, but i know i'm tired.. tired... tired.. Constipated, heart palps, insomnia, did i mention tired? ughh.." - all that could really be hypo.

I can get palps and insomnia when hypo like many others do also, not what you would think is it? You can also get shaky from hypo because of weakness. Even night sweats when hypo. Hands, warm and may excessively sweat when hyper, but cold when hypo.

For many, when relaxed they feel cold when hypo, not when hyper. The digestive tract is usually different from hypo to hyper. Not a pleasent thing to disscuss but "when hypo, you cant go, hyper, well you know!"

393685 tn?1425816122
my thought of going on the 100 was based off your comment. Of course no one can know this for sure - but you tried the 100mcg and felt worse - right? - well... based off your labs maybe/just maybe - you have an undiagnoised conversion issue - or maybe an issue with reverse T3 which you are not tested for.

If it is either - keeping your steady pace of the .88mcg and adding a trial of T3 into your treatment - then test... could improve those numbers with T3. The only thing if finding a RT3 issue with the test is present - then usually having the T4 med can still force more RT3. If your doctor did understand thyroid maybe they could assume a conversion problem is the issue first - before thinking it is all an RT3 issue.

The other thought is basing your symptoms and dosing. You felt losey in .100 - why go back to that again? I think you may be close in not being symptomatic on the .88 - but still you feel a bit odd - basing that off the test results showing clearly a low T3 - it just would make sense to speak to the doctor about a small addition with T3 meds.

Avatar universal
yeah i think i'm hypo by labs but have both hyper and hypo symptoms.. I have heart palps, night sweats, mild/short episodes of tachycardia but i also have constipation, dry skin and hair loss... I feel like i'm overall hypo and based on my recent labs i'm still hypo but when i took the 100mcg for 3 weeks i started having chest pains and that was my biggest concern on that dosage, now that i'm back down to the 88mcg the chest pains are gone but i still have all the other hyper/hypo symptoms and each day i feel more and more TIRED.. That's why i'm not sure what to do..
798555 tn?1292791151
Well like Stella said, T3 can be a miracle for some. I waited a long ten years before I tried T3, but that was after years of my labs looking ok, but not great on only T4 meds. Never know till you try. The smallest is Cytomel 5 and it can be split. I eventually switched to Armour and Nature Throid, ect after Cyto and Levo combined.
393685 tn?1425816122
Yeah - it sounds like you are thinking these are hyper symptoms - but really - it leans more towards hypothyroidism due to the really low T3.
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