New to hypo- I feel awful

[dani35]

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

[goolarra]

Do you have FT3 and FT4 results as well as TSH?  If so, please post with reference ranges.

How long have you been on meds altogether?  Have you been retested since starting?

Has the weakness, fatigue, dizziness and nausea started since you started levo, or did you have them before also?  The only symptom you mention is body aches...did you have others?

[dani35]

Thank you so much. When i first went to internist,  I had  a FT4  0.32  (0.82-1.77)  TSH 280.4 (0.45-4.5)  No t3 drawn. Started on levo 50 mcg at that point which was five weeks ago.  When I was hospitalized 3 weeks ago, had TSH, T3 and t4 repeated.  Was told by endo that T3 and T4 were in normal range and TSH was 150. I was then raised to 75 mcg levo and I have been on that dose for 2 weeks.  This week I am supposed to alternate  each day from 75 mcg and 100 mcg. I have an appointment with endo on Wednesday.    My original symptoms were tiredness and body aches.  Since starting the levo, I have felt dizzy and nauseous.  The doctors all feel these symptoms are from the thyroid being out of whack and will subside in time. I will have labs repeated in 4 weeks unless endo visit changes that. Just hope I start to feel better soon.                                                    

[Brucergoldberg]

Hey Dani,

Im not sure if Misery loves company but you and I are going through the same stuff sort of.  I am curious to know if you were tested for hashimotos?

One thing that has helped me since going through this is that when the nausea sets in, I take Ginger Root that you can buy at any drugstore or target.  It seems to help the nausea a little bit but does not completely alleviate it.  Also you need to stop drinking caffiene if you are drinking some now, that can help bring on the onset of the symptoms you are discussing.  Also lazymoose suggested taking valarium root to help sleep, that has helped me immensely.

I am told that these symptoms will go away, you are probably lucky if you can tough out that higher dose.  With Tsh of what you have, it sounds like you are going to end up on a nice healthy dose of thyroid.  I am only on .38 right now, but would like to increase once stabilized.

Are you taking synthroid?  Generic?  

Bruce

[dani35]

Thank you so much for the kind words.  This is truly the most miserable I have ever felt and it does make it easier to know I am not alone feeling like this.  I am currently on 75 mcg levothyroxine and  I will probably be increased when I have news labs drawn at end of month.  The doctors keep telling me I will start to feel better when we stabilize the thyroid.  I think I was only tested for hypothyroidism, not hashimotos.

[goolarra]

It takes 4-5 weeks for a new dose to reach its full potential in your system.  So, your 75 mcg dose is still settling out.  Most of us (not all) have to get FT4 to midrange or a little higher before symptoms go away.  FT3 should be upper half to upper third of range.  Often, it takes symptoms a while to resolve after levels are adjusted...your body still has to have time to heal from being hypo.  So, it's not a fast process and takes patience, patience, and when that fails, more patience.  Trying to hurry it usually just slows it don in the long run.

If you've been hypo for more than a few months (in retrospect most of us kind of know when it all started), it can take your body a while to get used to having the thyroid hormones available again.  That could be what's causing your dizziness and nausea.

I agree with Bruce that you should have antibody testing...both TPOab and TGab to see if you have Hashi's.  Your endo will probably order that soon.

You might consider requesting your blood work results from the hospital.  You should get into the habit of requesting results every time you have blood drawn.  You'll always have your history in your possession, and if you jot down meds and symptoms on the lab report, you'll be able to look back and use it as a guide.

Good luck with your appointment on Wednesday.  Is this a new endo?

[dani35]

Thank you for the good wishes.  The endo I see on Wednesday saw me on consult twice when I was hospitalized.  This the first time I will see her in her office.  I really need to gather up some questions to ask her.  I am hoping that she is able to help me alleviate some of the dizziness and nausea as my body adjusts to the thyroid hormones.  Is it         standard that doctors order antibody testing because no one has mentioned that to me?  Is the treatment for hashimotos and hypothyroidism different?  I really appreciate all your knowledge and help with this.        

[Barb135]

Hashimoto's is what causes the hypothyroidism. Hashi's is an autoimmune disease that attacks and eventually destroys the thyroid.  As the destruction progresses, the thyroid makes less and less hormones on its own; this is what causes us to become hypo.

When you take the levo every day, you are treating the hypo, as there is nothing you can do to treat the Hashi's except try to keep inflammation as low as possible.  There are vitamins/minerals that may help alleviate some of your symptoms.

The vitamin D should help you immensely.  Have you had vitamin B12, selenium or magnesium levels tested?  

[dani35]

Thanks so much.  I have so many questions about this and it really helps to find people who are so knowledgeable as they have gone through it. I have not had any vitamin/minerals tested except for Vit D which was very low.  I have taken four doses of the weekly Vit D so I hope that starts to improve.  I have read many of the symptoms of low Vit D and they seem to be the same as hypothyroidism.  I really appreciate all your help.

[grantj]

Hey Dani, I feel for you as I know I have went through much the same as you mention (not the hospital thing though).  The good news is that there is light now that you've been diagnosed and all.  For me, Armour has been my saving grace; never knew how good I could feel once stabilized.  It will never be perfect, but immensely better than it was without meds.  Hang in there; it takes time and patience for sure.  I sure wish you well...

[dani35]

Thanks for the kind wishes.  I am  glad I was diagnosed and hope things will improve soon.  Did you originally begin on Armour or did you take other medications first?  As I am feeling so sick, I wonder if the levothyroxine is the reason or the disease itself?  I know it takes time, just hope not much longer.

[goolarra]

I think it's the disease itself making you feel sick.  It's such a game of patience since levels take so long to completely respond to changes in dosage.  You'll feel better, but we can't promise tomorrow!  

[dani35]

I cant thank you enough for your encouragement.  Last night and this morning have been really difficult.  I am very nauseous but not sure what I can take to feel better? Any suggestions?  

[goolarra]

I've heard people suggesting ginger for the nausea.  Ginger is really good for nausea.  That's why your mom used to give you ginger ale if you were sick, and they recommend chewing on ginger snaps so you don't get seasick.  You can either eat the real thing or get capsules.  It could be worth a try...

[kipland]

Nausea was one of my worst symptoms when I was hypo.  If the ginger doesn't work, ask the doctor for some anti-nausea meds.  It helps to at least keep it at bay until your tsh comes down.  I feel for you.  It's horrible!

[dani35]

Thanks for the encouragement.  I have been drinking ginger ale and it seems to help a little. I have no appetite and the nausea truly comes in waves.  I am seeing the endo tomorrow so I plan on asking her for anti-nausea meds to help me as my levels come down. It helps to know others have been through this and are feeling better.

[stella5349]

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.

[dani35]

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.

[goolarra]

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.?

[dani35]

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.    

[goolarra]

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?  

[dani35]

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.

[goolarra]

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!  

[dani35]

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.

[dani35]

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 ?