Advice Needed for: New-onset Hyperthyroidism, from known Hypothryoidism

[Toddles5]

Hello all,
I just noticed this wonderful forum and would like to ask some questions. I've been diagnosed with hypothyroidism for the last 7 years, and have been on a stable dose of Synthroid, 75 mcg, for the entire time with great lab work.

1 month ago, I started having MANY of the symptoms of hyperthyroidism, including: difficulty concentrating, fatigue, frequent bowel movements, heat intolerance, increased appetite, nervousness, restlessness, weight loss, pounding pulse, skin blushing/flushed sensation, sleeping difficulty, and generalized body aches (sorry, so long)

When I saw my doctor, my thyroid labs are as follows:
TSH: 0.00 [0.35-5.50] uIU/ml
T4F: 2.1 [0.9-1.8] ng/dl
and I couldn't find any T3 values.

My physician wants to drop my dose from 75 mcg to 50 mcg, and then redraw labs in a month. I feel that this intervention isn't going to sufficiently improve the way I feel to maintain my current life, job, family, etc. Am I crazy for thinking this? I still have all of the same symptoms despite changing to a lower dosage.

Thank you for your consideration,
-Toddles5

[Toddles5]

Hello all,
Happy Holidays. Had a follow up with endocrinology today after being off of Meds for about 7 weeks. As expected, I trending back into hypothyroidism, but don't feel all too bad at present. Labs are:

T4 Direct:   0.74    (0.82-1.77)
TSH:          36.4     (0.45-4.5)
T3:             2.4        (2.0-4.4)

So, back on 25 mcg levothyroxine and we will revisit again in 6 weeks.

[Toddles5]

He mentioned that it didn't look like I had Hashi's (although he was suspicious about the density of tissue in my thyroid scan). My two month bender of hyperthyroidism seems to be subsiding, without any known reasons why it began in the first place. We are going to wait a month without levothyroxine and recheck labs to see where I trend.

I'm not really sure how to interpret alot of the rest of the throid labs; any lab experts in the room? : )
                                               -Toddles5

[Toddles5]

Okay, so got in to see new endocrinologist and received my lab work:
T4, Free: 1.46 ng/dl [0.82-1.77]
T3, Free: 3 pg/ml [2-4.4]
TSH: 0.025 uIU/ml [0.45-4.5]
Anti-Thyroglobulin Antibodies  16  IU/ml  [2.0 = Positive]
Thyroglobulin (TG-RIA)  17  ng/ml  [Pubertal children and adults: <40]
Thyroglobulin Recovery: 85% [85-115]
Thyrotropin Receptor Ab: <0.51 IU/L  [0.00-1.75]
Thyroid Stim Immunoglobulin 31% [0-139]
Thryoid Peroxidase (TPO) Ab 13 IU/ml [0-34]

[Kristina538]

I'm actually looking forward to you being, at least on 25mcg - I found the sx' harder when hypo - even though hyper was very scarey, at least atenolol etc  can help.   Looking forward to hearing you've had some good advice on your appointment.

[Toddles5]

Feeling a bit better since being off of levothroxine for 3 days + addition of low-dose atenolol (beta blocker). Only another weeks wait tops til I meet new endocrinologist. Should be interesting; I'm looking forward to this. Thank you all for support! : )

[Totie]

Hang in there....

[Toddles5]

Just spoke with primary MD, and I'm stopping levothyroxine completely until I can get in to see endocrinology. I still have an appointment on 10/15, but am now on a cancellation list to try and get in sooner. Ugh, resting heart rate of 96 is no bueno. I hope I don't have to wait that long...

[Toddles5]

Hello,
I've been on the reduced dose since about 9/23. I may be having slight improvements, although they seem to be transient as I still have to take tylenol during the day for body aches and benadryl at night to help with sleep. Difficulty in concentrating persists as does a noticeably bounding pulse. I'm curious as well as to what he will advise. It seems a bit crazy to keep taking a drug that I know is contributing to my symptoms, even if I will eventually balance out.

My biggest question is why I had the sudden & dramatic shift towards hyperthyroidism after 7 years of stability. I was under the impression that he was going to test for autoimmune processes as well but it doesn't look like he has done that. I seem to have aligned some of the lab values with early Hashi's, but not sure. I hope to have contact with MD by weeks end...

[Kristina538]

It'll be interesting to see what he advises.   How many weeks were you on the reduced med?     There is little difference, although it's nice to see TSH on the board at least  (when mine was 0.003 I was told it was non-existent similarly to your 0.00, so at least it's showing something).   But with FT3 and FT4 both H, it looks as though you have a way to go.  

If you've only altered the meds since about 23rd Sept (?) I wouldn't have expected huge changes in the blood tests, but how are you feeling - any slight improvements?  

[Totie]

If you are still having hyper symptoms they will most likely lower your dosage.

You are being over medicated.

[Toddles5]

Okay, just got my latest thryoid lab results:

T3F : 4.8 H [2.3 - 4.2] pg/mL
T3UP : 38.52 H [22.5 - 37.0] %
FTI : 4.62 H [0.96 - 4.55]
T4 : 12.0 H [4.5 - 10.9] ug/dL
TSH3-ULTRA : 0.01 L [0.35 - 5.50] uIU/ml
T4F : 2.0 H [0.9-1.8] ng/dL

I'm still on levothryoxine 50 mcg, and waiting to hear from my primary MD...

[Totie]

I think beta blockers are for HR over 100, could be wrong,

For me I waited until the last minute to have beta blockers, I hated them...

Your symptoms will NOT change over night, so really it is patience and more patience.

I am on ambien (generic) for insomnia, however, I have been on it for over 10yrs.

[Toddles5]

Thank you both for your kind words of encouragement and pearls of wisdom. I'm scheduled to draw more labs tomorrow, and hopefully I'll have more answers. I've asked my primary physician for beta blockers and/or a sleeping medication (or anything else that who help relieve my symptoms) but have been refused on two occasions. I already have an endocrinology appointment lined up for 10/15, and I will likely be seeking a new primary MD as well. I will keep you all posted. Thank you for your anecdotes and support, it's great to know that others have gone through similar battles!

[Kristina538]

I'm glad you followed your instinct.   I remember having a heart-rate and BP similar - I even drove myself to hospital once and the nurse discounted my 90 bpm and said over 100bmp would be worthy of being seen.  They did see me however, and, if nothing else, I calmed down and within two hours had improved.    I didn't realise my shortness of breath was related until after I was finally treated!!

"If in any real doubt, get checked out" is my motto now.  A little embarrassment at being deemed 'okay' is a small price to pay for the decrease in my anxiety.  

However, when hyper I did have sleeping pills, which helped enormously, but also probably put off my treatment because they helped me 'cope' and get to work despite my BP heartrate and anxiety.   I'm looking forward to hearing off some improvements for you.   When taking both ATD's and levo I noticed very subtle improvements after a week, and after two was able to confirm to myself they were real...

I just hope for you that you find the same with the decreased dose and hope others that have been through a med induced hyper state will chime in with their experiences.  

Did your doctor offer you a low dose metaprolol or something simlar to calm the heartrate down?.  I did get relief from that, although it can mask the symptoms when you're trying to adjust your meds and you wouldn't want to be on it if hypo (I was waiting for RAI when started on metaprolol).

Best to you for the coming week - keep us updated!

[yankeeRN]

Sorry you are going through all. I know firsthand how uncomfortable the symptoms of hyperthyroid can be.  The worst is the pounding heart and rapid heart rate--mine went up to 170--not a good feeling...even if my heart rate was only 90 it was bounding and I could count my heart rate by just standing there and listening to it because it felt like it was going to jump out of my chest.  Until things are under control with your thyroid DO NOT exercise--also do not exert yourself in any way.  I feel your frustration with your MD about him not understanding what you are going through and how frustrating it is to deal with the symptoms.  I don't have hypothroid I have hyperthyroid and for me Grave's.  I am learning to cope since it has been a little over a year--this forum has many people who have walked in yours and my shoes and they can make suggestions ,offer comfort and a shoulder to lean on.  Last year when I was at feeling my worst this forum helped me to feel that there is hope and that I was not alone --my husband and friends were very supportive but they did not truly know what I was experiencing on a physical and emotional level.  Best wishes for a steady resolution of your symptoms..sometimes it can take days to get the symptoms under control.

[Toddles5]

....And as my forgetfulness shows : ), I've also lost 7 pounds in a month and feel short of breath during rest.

[Toddles5]

Updates: So, after speaking with my physician a couple of different times, he has taken my symptoms more seriously. Instead of waiting for a month before rechecking my levels, we will wait a couple more days (1 week since decrease from 75 mcg to 50 mcg), AND I still had a 3-day waiting period before starting new dose. I know he will check for other thyroid disorders like Hashi, etc., but I'm having a hard time waiting until Tuesday to draw blood.

I still have body aches throughout the day, difficulty concentrating, fatigue, and a bounding pulse. At home, I average a resting heart rate >90/min and my BP has been high (~140-150/80-85 mmHg). I can truly empathize with those folks in this forum who feel like they are losing their grip on reality!

Either way, I've got an endocrinology appointment on 10/15 if things don't improve to my satisfaction with primary care MD.

[Toddles5]

That seems like good advice. Honestly, in 7 years of being diagnosed with any thyroid disorder, this is one of the 2 times I have ever noticed a problem, and I've never felt this bad. Thank you all for feedback.

[Toddles5]

Sorry, to clarify. I DO want to reduce my dosage, but felt that simply dropping by 25 mcg wasn't enough to help improve my symptoms in the meantime. I still have all the symptoms. Regarding the TSH, "0.00" is correct. I wish they had done a T3...

[sunrock]

Not sure I understand your labs...
is your TSH 0.00?

See if your Doctor could retest you for the Free T4 and Free T3 as well as a test for hastimoto.

Mia

[Totie]

Why don't you want the dosage changed? If you drop your symptoms may go away.