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New to hypo- I feel awful

Hi I am newly diagnosed with hypothyroidism. I went to internist with tired,achy body symptoms. Had lab work done-TSH was 280. I was immediately started on 50mcg Levothyroxine. 3 weeks later, ended up feeling very sick with vomiting and severe dizziness and was admitted to hospital for iv fluids and MRI of brain. MRI showed enlarged pituitary but no tumors.  I also have very low Vitamin D. I am now taking 75 mcg Levothyroxine and Vitamin D 50000 U once a week.  I have been on this dose for 2 weeks now and still feel so awful.  I am so weak, tired and dizzy with occasional of nausea . When should I start to feel better? I have always been very healthy and was shocked to have such bad test results. Would love to hear some positive feedback. Thanks
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Avatar universal
Yes, HR should stabilize once you get on a stable dose.  I do take a beta blocker, but I have a pre-existing heart arrhythmia.  Even with that, though, I haven't had any tachycardia in almost a year (where's the wood to knock on?!).  I've considered cutting back on the beta blocker, but I'm enjoying being tachy-free (for the first time since I was about 7) so much that I don't want to rock the boat.

I'm glad the 75 mcg is going well for you.  Keep us posted!
Helpful - 0
Avatar universal
I started on the 75mcg dose on Sunday and so far so good. I have not been dizzy all week so that is an improvement.  Hopefully the tachycardia will not return. I do have beta blocker if it does but my b/p is usually low so I will have to monitor it. Does heart rate stabilize once thyroid levels better?
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Avatar universal
Good morning    Just spoke with my endo. She is so helpful and really listens to my symptoms.  She really feels that I should be taking 75mcg as she feels that is what my body needs.  She feels the palpitations are from the hypo and I will start to feel better once we get the TSH in check.  She feels that since all my cardiac tests came back fine that we are dealing with hypo symptoms rather than heart related.  Hope she is right.
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865758 tn?1285952904
LOL, thanks for clarifying!!!  My numbers indicate the need for an increase I am just scared of the medicine now which I know is stupid but I can't help it :(  I think I am going to try alternating 75 and the 88 for a while.  Thanks again!!!!

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Avatar universal
I don't know that I dare clarify!!!  I'm totally confused!

The dani who is currently at 50 mcg should ask her doctor about perhaps increasing to 62.5, for example - somewhere between the 50 she's on now and the 75 that gave her tachy.

The dani who is currently on 75 and avoiding going to 88 might ask her doctor about going to an interim increase, such as 81.5, rather than going directly to 88.

I think we need to split you two up!  LOL
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Avatar universal
Thanks so much for the advice.  This is all so confusing to me.  When I first went to internist, all I felt was tired and was truly shocked to see my TSH so high.  I had no other symptoms but once I started on medication I have felt terrible.  I know this will be a process adjusting the dose and want to feel better quickly.  I am realizing it may take awhile to achieve this.   I just hope the tachycardia subsides so I can find my optimal dose.
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865758 tn?1285952904
LOL, I am not sure which dani you are talking to about the 81.5.  Can you please clarify? This is a bit confusing with all the dani's :)
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Avatar universal
Sorry, the above comment was supposed to be to dani2776...too many dani's!

Dani35, your increase schedule was almost exactly like mine, except that I went to 69.5 also.  I struggled with every increase, but have been on 75 for over two years now.  I'd suggest you ask your doctor about going to 81.5 rather than going to 88 in one jump.  You can either alternate 75/88 or take half of each every day to get 81.5. Do you have recent labs and ranges to post?
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Avatar universal
Ask your doctor about 62.5.  A couple of weeks on an interim dose can make all the difference.  
Helpful - 0
865758 tn?1285952904
I really feel for you and for all you are going through.  This whole thyroid stuff can be a nightmare.  I have been battling it for a couple of years now and am still having problems especially with the dizziness and my docs have all agreed it was the thyroid too.  I went as far as having them test me for MS and everything else I could think of because I just couldn't accept that the thyroid was doing so much bad stuff to me.  When I was first diagnosed they too started me at 50 and in 2 weeks my whole world fell apart.  My heart was going crazy (180 at rest) which led to a cardiologist and every heart test known to man.  Everything came back fine except for tachycardia and they reduced my meds to 25.  At first they also had me on a generic brand and the endo immediately changed me to name brand Synthroid and then all the stomach issues started.  I was then sent to a GI doc who diagnosed IBS.  I didn't agree with that and after a lot of research I found that Synthroid contained 2 things I have intolerances to.  One being acacia which is in the family of a tree or shrub and I am allergic to every tree out there.  Also it contains lactose and I have an intolerance to lactose when taken or drank on an empty stomach which is of course when you take thyroid meds.  After I presented that, I was switched to name brand Levoxyl which then all the stomach issues have went away.  I am also very sensitive to the meds.  I have been up and down and back again numerous times.  I finally had to use the following schedule to increase me my meds.  25, 37.5, 44, 50, 62.5 and currently on 75.  I have had so many problems with my meds or to be honest from the docs trying to go to fast that I have become very afraid of my meds.  I was suppose to increase to 88 a while ago and yet here I am at 75 because I am afraid.  Good luck to you and as frustrating as it is, take it slow.  Everyone says we will get there and I have nothing else to believe but that.
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Avatar universal
I am so appreciative of all the good advice here.  I truly felt better on the 75mcg- the dizziness had subsided and the nausea was so much better.  The endo felt that the tachycardia was from the 75 mcg dose so I am concerned that she will not increase the dosage.  I am going to call her today to check.
Helpful - 0
1139187 tn?1355706647
I am following goolarras advice myself.   I found your posting interesting about feeling bad on .50 and better on .75.  I too did that as well. I feel much better on .75 than .50.  It's almost like your body will tell you what to do next.  What about doing .63?
Helpful - 0
Avatar universal
My experience has been that it's usually about ten days to two weeks before you START to feel the effects of a meds change (but that's me, and we all react differently).  You are most likely experiencing changes in your labs, but that's something that has to happen to get your dose properly regulated.  The problem is that a dose change doesn't reach its full potential in your blood for four to six weeks.  At some point, you have to stop adjusting meds long enough to reach a stable level in your blood, retest (FT3, FT4 and TSH), re-evaluate symptoms and go from there.  If you don't give it time to settle, you're chasing a moving target.

Only you know how uncomfortable you feel.  Perhaps you should see what your doctor thinks about trying a smaller increase...
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Avatar universal
Thanks so much.  I feel dizzy again this morning so I am fearful that this dose is too low.  I am afraid that I could be experiencing changes in my labs since I feel so uncomfortable.  Can this happen so quickly?   I certainly dont want the tachycardia again but would really like my thyroid levels to improve.  
Helpful - 0
Avatar universal
It sounds like the 50 mcg might be a little low for you.  However, since you have been increasing pretty aggressively, I still agree with your doctor that you should give it a while and see where your labs and symptoms are when it all settles out.  You might ask her about trying a smaller increase next time.  You can get 62.5 by splitting a 125 or taking a 50 and half a 25, for example.  If you're really uncomfortable, call your doctor and ask about going somewhere in the middle of the current dose, which you feel hypo on, and the 75 that gave you tachycardia.  
Helpful - 0
Avatar universal
Its been about 10 days since I had to reduce to 50 mcg Levothyroxine and I truly feel awful today.. The dizziness and body aches are really bad and my throat around the thyroid area is so uncomfortable.  I am nervous that maybe this dose is too low for me.  But with the fast heart rate I was having, I doubt that the dosage can be increased at this time.  Are my symptoms normal ?
Helpful - 0
Avatar universal
Thanks so much for all your guidance.  It is hard to be patient when you just want to feel well.  I hope that I am on the path to wellness and start to heal soon.  I agree that I must take it slow with the dosage as I am always sensitve to any medication.  I really trust my endo and she seems to be not only focused on the labs but asks about symptoms.
Helpful - 0
Avatar universal
As we often say, patience, patience, patience, and when that fails...more patience.  You can't hurry this as much as we'd all like to, and that goes double for those of us very sensitive to meds.

Perfect...I agree completely with your endo.  Give this dose time to really settle out and see where you are then with both labs and symptoms.  Keep in mind that after labs look good (approximately midrange for FT4 and slightly higher for FT3), it often takes a while longer for symptoms to abate since our bodies have to heal from the months of hypo.

I also agree that you might find the 50 mcg very close to what you need.  Give it a chance...just keep moving in the right direction.  You remember the hare lost the race!  
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Avatar universal
I thought it did seem quite aggressive at the the start.. My internist was regulating the dose in the beginning but since I saw the endo, she has taken over the dosing.  I really trust my endo and she truly comes recommended from other doctors.  I agree that the dosages have not been given time to stabilize.  My endo feels that my T3 and T4 levels look pretty good and maybe the 50mcg dose may be what I need.  She wants to stay on this dose for 4-6 weeks and we will retest in beginning of June.  She wants me to take it slow because I am very sensitive to meds.   I just cant wait to feel better and hope my energy returns soon.
Helpful - 0
Avatar universal
That is a pretty aggressive increase schedule.  You were only at 50 for two weeks, went to 50/75 for two more, then to 75.  It took me over a year to go from 25 to 75...talk about snail's pace!  Since it takes 4-6 weeks for any meds change to completely stabilize, your increases are kind of running ahead of that schedule...a bit like overdriving your headlights in your car.  Since you are so sensitive, like me, you're probably going to have to spend more time than anticipated at each dose.

Your FT4 from your labs of four weeks ago doesn't really look too bad considering you've only been on meds for a very short time.  Since your levels hadn't had time to stabilize on either the 50 mcg dose or the 50/75, I think your levels might actually look very good after they finish coming up.  You could just find that 50 mcg is very close to what you need to maintain.

I think your endo made a very good move in decreasing your dose.  What's the plan for re-testing and re-evaluating at this point?  
Helpful - 0
Avatar universal
Thank you so much for encouragement. I had been on Levothyroxine 50mg for 2 weeks after being diagnosed. Then alternating 50mg and 75mg for 2 weeks.  The labs I had drawn on April 8th  were on Levothyroxine 75mg.  Was decreased to 50 mg  2 weeks later because of palpatations.   My internist has a cardiologist in her office so I saw him.  After EKGS,Echo, and stress test, cardiac blood work, they determined I have no cardiac problems,but feel the medicine is making my heart race.  So now I must stay on 50mg for a period of time. Was prescribed 25mg Tenormin for the increased heart rate but have low B/P,so I cant take it.   I really have had only fast heart rate and insomnia when on 75mg levo.    
Helpful - 0
Avatar universal
It will get better.  I know the snail's pace can be very frustrating...

So, if I interpret the time line correctly, you had these labs drawn just before upping your Levoxyl to 75 mcg.  What were you taking prior to that?  Did your endo test anything but TSH on 4/28?

Did you have any other symptoms on the higher dose, such as insomnia, hand tremors, etc.?
Helpful - 0
Avatar universal
I had my visit with my endo 4 weeks ago. Had labs drawn.  Free T3 2.9 (2.0-4.4) Free T4 1.19 (0.82-1.77) TSH 41  (definitely an improvement from the 280 I started with on Feb 26)  Prolactin 14  Cortisol 21.6   Was on Levothyroxine 75mg for 3 weeks.  Unfortunately last week, I had palpitations and the endo reduced me to 50mg. Endo did TSH on April 28th which came back at 25.  I know the endo feels we need to go slow as I am very sensitive to meds. But I am so concerned that I will lose the progress we made. I still feel so weak and dizzy at times.  I also saw an ENT who was really great.  He feels the dizziness is due to the thyroid and feels this will all improve as TSH and symptoms improve.  Just need reassurance that this will all get better.
Helpful - 0
393685 tn?1425812522
I'm concerned on the pitutiary issues and concentrating on the thyroid. There's isn't a correlation of Free T3 and Free T4 ratios to really detect if thyroid meds are needed really or if certain thyroid meds should be used over just taking the T4 Synthetic med alone. Especially with a found pitutiary issue.

Pitutiary and low Vit D "can" go hand in hand - also low Vit D and thyroid can be common to.

My thought really here would be two things. Enforce you want the FT3 and FT4 labs done and compared and also do further testing in the issue with the pituitary. Also a complete panel of Vit D - ionized calcium - serum calcium and phophuros to look at those.

Also it would be wise to talk over the hypothalamus in connection with all this too.
Helpful - 0
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