feeling worse after meds-panic attacks and anxiety

Eir33

Hi Diana,

I'm sorry you're struggling right now, it's never a fun place to be, physically or emotionally!

You're on a very low dose of T4 med. While it's important to not go up too much at once, I think your symptoms are definitely hypo related. Your free levels are both in the lower range of normal, and your TSH could be quite a bit lower without causing alarm.

It's possible that your free T4 isn't converted too well to the free T3, and that's why the fT3 is going down instead of up. You've been on the most recent dose long enough that the results should be pretty accurate. I found that my free T3 consistently dropped when taking T4 meds, it seems more common than I'd thought. Eventually I added a small dose of Cytomel, which seems to help the fT3 levels, but at the same time made it necessary to increase the T4 meds, because THEY dropped with the addition of the Cytomel.

Point being, I think you need a higher dose to start feeling better. Depending on what's causing your hypo (do you have Hashimotos?) it can take awhile to find the level that's right for your body. Ultimately, the best test is how you feel. Your numbers on the lab test may be in *normal range*, but it doesn't mean that it's YOUR normal range. If your doc ignores your symptoms and goes by numbers alone, they're doing you a great disservice, IMO.

Also I should say that for myself, I definitely have an 'adjustment period', to put it kindly, after increasing thyroid meds. I think there's 2 factors to this: 1) I am still hypo so those symptoms are being jerks, and 2) My body is adapting to the influx of more hormone, and can't sort it through the assembly line fast enough and gets a little overwhelmed, until the backlog is evened out a bit.

I hope your doc listens to how you FEEL. You can look perfect on paper, but it doesn't matter if your hair is on fire at the same time.

Diana64

Thank you for your explanation, it makes sense to me. I hope my Endo will show understanding and agree with more hormons. I will write you back when I have my lab test. I don't know for sure if I have Hashimoto, because I don't have the Antibodies, so the doc said maybe or not yet :-/ But my thyroid is only 6 ml small! I don't think that this is normal...

BadCook

Hi Diana and Eir, and hello boards!

Registered on here today to seek advice for v.similar situation to Diana. This is my second day on levothyroxine (25 micrograms) and I am feeling quite jittery and high. Years ago I'd have thought that was great fun, but I'm a bit square nowadays...

Was diagnosed with Graves as an adolescent which was controlled with anti-thyroid drugs (carbimazole and propylthiouracyl) until late twenties, in which time I enjoyed three long periods of remission and needed no treatment. A recent general health screening flagged up that I was now slightly hypo (T4=13, TSH 7.7) and that my poor over-worked thyroid gland was beginning to pack in. I am 31. My very kind and attentive GP started me on thyroxine replacement and explained that she will slowly build up the dose and I can expect to eventually be on 100-150mg for the rest of my life.

Like Diana, I am feeling jumpy and anxious, as if I have drunk far too much coffee and something bad is about to happen. Am reassured to read from Eir that an adjustment period can be experienced and hope to feel more balanced over the next few weeks. Thanks for your advice Eir.

I did have a question for anyone taking thyroxine replacement. How long does it take to work? Am I experiencing a placebo effect when I feel as if I am rushing within an hour of taking the pill? I know the desired re-balancing effect takes several weeks. But how long does the synthetic hormone take to activate a reaction in our body? I take it first thing on an empty stomach.

Thank you for you advice!

sammy64

Hello newbies!

I'm sorry to hear of your struggles. Unfortunately, this is part of the adjustment process.

Levothyroxine (or any T4 med) has a 7-day half-life. This means that 1/2 of the dose will be used up within 7 days. So, it's doubtful that any experiences one has is directly related to the dosing.

There is a biochemical explanation for the experiences we have as we adjust to any dose but, suffice it to say that the body gets confused when it first starts getting the hormone it's been lacking for so long.

First, the body is nicely surprised that it's getting more hormone.....then, it has to decide how to allocate what it's getting....then, if the dose isn't what the body ultimately needs, it complains. All the while, we can have symptoms.

Titrating up on our meds dose isn't fun - it requires a lot of patience. But, as we near our optimal dose, the symptoms become less "dramatic" and we get little teasers of just how good it feels to have the proper amount of thyroid hormone.

I've been taking replacement since March of last year and had several instances during which my levels were optimized and, it was awesome.

Each time I needed my meds dose adjusted, my levels didn't need as much improvement so, for the earlier part of this year, I had very occasional and very minor symptoms when my dose needed to be adjusted.

My last dose increase was in May and I felt nothing but improvement from that point forward. I have been symptom-free for awhile now and it was worth every effort.

I found that the key to me feeling well is getting labs 6 wks. after any dose adjustment (since the body needs 6 wks. to stabilize after a dose adjustment). If the labs after a dose adjustment showed my levels to be where I need them to be, I'll go 4 wks. for the next labs - just to make sure my levels "hold".

I discovered early on that I need my FreeT4 and FreeT3 levels at the very top of the range to be symptom-free. Hopefully, most of you are like most healthy people and need their FreeT4/FreeT3 levels in the upper third of the range....obviously, it will take less time for you to optimize your levels if this is the case for you.

A doctor that doses based upon TSH will most likely not help you become symptom-free. TSH is a pituitary hormone and, once we start taking thyroid hormone replacement, it doesn't give an accurate picture of thyroid status at all.

Per the final sentence 2003 article published by the National Institute of Health linked below: "TSH determination is diagnostically misleading and only free hormone measurements are reliable for thyroid function assessment."

http://www.ncbi.nlm.nih.gov/pubmed/12915350?ordinalpos=1&itool=EntrezSystem 2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pub med_SingleItemSupl.Pubmed_Discovery_RA&l inkpos=4&log$=relatedreviews&logdbfrom=p ubmed

If you can get a "stuck-on-TSH" doctor to still run the labs you need and adjust your dose with the goal of complete symptom elimination, you stand a chance of feeling well while having thyroid disease.

If not, you just might want to join the rest of us with accumulating a list of former thyroid doctors until we ultimately partner with a thyroid-savvy one. This, too, is worth every effort.

My current thyroid doctor is #5. Thankfully, I had already partnered with her by the time I went hypo - I can't imagine how sick I'd be if my 3 former endos (all stuck on TSH) or generally-thyroid-clueless GP were caring for me.....

__________________
Graves' 2007...remission 2009....hypo 2010

BadCook

Thank you, this has really helped me to get my head round these initial reactions. I wish resources like these boards were around when I was a teenager and struggling to understand.

It sounds as if in the last few years there is a better grassroots understanding of the causes of symptoms, and legitimising symptoms as being as important as hormone levels. Back then some Drs wouldn't even tell me what my levels were! They would just adjust the medication or say "you're normal" and I found it quite hard to relate to.

Having a wonky thyroid is quite an experience. I think its great that this forum exists for people to talk to each other

sammy64

I think the reason most of us found the "you're normal" statements to be hard to relate to was mainly due to the fact that our "normal" (aka in-range) levels were anything but our normal.

Doctors have become so hung up on numbers that they tend to ignore symptoms.

Before thyroid testing became available, doctors medicated based upon symptoms with the goal of complete symptom elimination.

Now, they look at in-range labs and tell us we are "normal".

Thankfully, some doctors (including my current one) recognize that each of us has his/her own normal within the normal ranges.

I know that my previous doctors would have freaked about my top-of-the-range levels that I need to be symptom-free.....they'd be telling me I was going hyper - especially since my Graves' blocking antibodies keep my TSH suppressed.

If my levels are in the normal range, I'm "normal" - right, Doc?

__________________
Graves' 2007...remission 2009....hypo 2010

BadCook

Well I'm definitely not "normal" today!

I was very reassured last week when my GP not only showed me a graph she had created to track my T4, but also invited me to come in for a test whenever I felt "off" or ill.

It's about both isn't it? validating your experience of symptoms and working out what levels cause/result in the best outcome for the individual.

sammy64

I think it's great that a doctor tracks FreeT4 levels - hopefully, the information is used to identify your personal best level. Even though my doctor is quite thyroid-savvy, it didn't seem like she did this for me but, I did it and she respects what I've determined are my optimal levels.

Now, I would hope your doctor also tracks your FreeT3 level since T3 is the active hormone.

Many people develop problems with converting T4 (storage hormone) into T3 since 20% of this happens in the thyroid. Well, a sick thyroid that already needs T4 stands a good chance of not converting well, either.

Most definitely, it's a combination of symptoms validation and identifying optimal levels.

Unfortunately, all too many doctors are too quick to dismiss symptoms to anything but the thyroid.

__________________
Graves' 2007...remission 2009....hypo 2010

Diana64

Thank you so much! I feel somehow more hopeful when I read comments like this. At the moment for me it's hard to believe that some day I may feel normal and healthy again. I have to say that I also have a prolactinom, which is treated with Cabergoline. So I think that my TSH hormon is quite non relevant regarding my thyroid, because it is under control of the pituitary gland, which is in my case not really reliably. My doc knows that but she is still way too fixed on the TSH. Please keep my fingers crossed for tomorrow, when I have an appointment with my Endo!

Diana64

Here I am after the visit at my Endo.
My new lab results:
TSH 1,21
Ft3 2,80 ( 2-4,4)
Ft4 11,70 ( 9,3-17)
Prolaktin 34,40 ( 4,79- 23,3)

Nothing changed really, only slightly improvement of the hormons. She said to me, I don't have to increase my L-Thyroxin meds, because I'm in an optimal range!!! No discussion about my symptoms helped :-/
I only have to increase Cabergoline because of the high Prolactin.
I feel so down now and don't know what to do. Another Endo won't help me, because I read it in an forum in my country, that all of them here in the City are TSH fixed and don't consider the Ft3 and Ft4.
What should I do? I could cry, but I'm too depressed and too tired for it...

Diana64

P.s. Also my other labs don't seem to be really O.k. What would you say?

TSH 1,21
Ft3 2,80 ( 2-4,4)
Ft4 11,70 ( 9,3-17)
Prolaktin 34,40 ( 4,79- 23,3)
Cortisol 127 ( 62-194)
STH <0,10 ( 0-5)
IGF-1 172 (183-972)
ACTH 11,30 (4,7-48)
DHEAS 4,30 (0,4-4,3)

thanks!

Diana64

Hi!

I just wanted to give a sign from me. In autumn I have reduced the dosage of the thyroid hormons, because my nervousness and anxiety was just too heavy. My doc prescribed me beta blocker, which helped me to calm down. After few weeks I started to feel better and better, panic and anxiety just disappeared!What a relief! The dosage of the Thyroid hormons which I was taking was obviously too high for me, although it was still quite low. But, every body is different. So soon I was able to discontinue the beta blocker and I'm just fine now. My thyroid levels are now in the lowest norm range, but I can live much better with a mild hypothyroidism then with those terrible mental symptoms and state of adrenal rushes all the time. Also my prolactin levels are low, so I don't have to take Dostinex again.
I'm so happy that this anxiety and panic attacks just stopped! And that I'm not a psycho-freak as I already thought!

FinnMaid

Glad to hear you're feeling better It truly isn't all about the labs

Wanabewell

Saw this thread and had to read it. I was on hypo-meds for 10 days and doc took me off them due to zero appetite and panic, and since he switched me from Levoxy to armour after 7 days and wanted to be sure they were not interacting. I had panic attacks years ago and I am horribly afraid of getting them again. I still have little appetite 10 days after stopping the meds. My sister had major anxiety while titrating years ago. I am starting again on Thurs. - Doc thought at a low level because of symptoms (15mg). I am depressed right now also because of life stuff. I think I am sensitive to these meds based on what I read and my reaction. Man I thought meds were supposed to get you better - I know finding the right dose should help in the long run but based on what I have learned I am not feeling happy about starting meds again that made me feel so crappy. I guess I will have to go through this but anxiety for me is debilitating. I will begin meditating again and praying a lot.