Having problems and I need help

Hormones
1

HI

I've been hypo since 2002.  I did well on levoxyl until they recalled it.  Then I was put on levothyroxine .75 and it was ok until a few months ago.  The levels would not stay level in my blood and it was like a roller coaster differnent symptoms about every 3 months.  Well at the beginning of July this year I had a veritgo attack, at least that what I assume.  I had BPPV diagnosed in 2011 and had an eply for it.  It was better and then in july it came back, I guess thats what it is, I don't know anymore.  About the 3rd week of July i started having symptoms of low thyroid and checked my levels and it was 3.49 range .045-3.5, so i called the endo and he looked at the numbers and said he need to up it again, well this had been going on for months so I asked to go back on the levoxyl and he said ok, so we started on .75 on July 23rd, I went back at 8 weeks and the numbers were 1.40 range .045-3.5 so he asked how I was feeling because the number was good, at that time I was having anxiety, leg aches, panic at times, neck pain, headaches and still dizzy and thought it was stress, so I stayed on it well 3 weeks later the syptoms became worse with cold all time and still anxiety, some hair lose, so I checked the levels again and this time 3 weeks later it was 4.71 range .045-3.5 so he upped the dose within 2 weeks it  was awful panic everyday and crying out of control with worry, dizziness, anxiety all day. I went into to see him and he said sounds like the levoxyl either had no medication in it during that sencond dose or the meds just aren't right for me anymore.  I didn't think going back on it would do this.  Is that possible?  so he said since my anxiety was so bad he wanted me to take my xanax that I have for GAD and take it twice a day, its .25mgs and he put me on unithroid .75, this was 3 weeks ago.  Im do to seee him next week and check levels.  During all this with the neck pain and headaches I had trigger point injections by my neuorologist, and the endo said these could have had something to do with it because its a steriod and they can cause anxiety to .  He had a brain scan CT done and ran bllod tests and my coritsol was fine, vit d was at 24 so he put me on 2000units a day and my b12 was low at 376 so he sstarted 500mcgs a day.  My issue is the dizziness, I feel like i'm rocking and moving when I'm sitting, laying down, standing, walking, so i'm very worried about it.  My primary doc sent for eply meneuvers and it worked for a bit but its still there.  So now i'm waiting for a referral back to the vestibular doc to get it checked properly.  I'm having anxiety, dizziness, my legs ad lower back hurt, feels like i won't be able to walk, which of course causes anxiety.  I don't know what is casuing the  anxeity me or the meds.  I'm scared all the time. I worry every second of the day.  I stopped the xanax on week 2 becasue I was afraid to get addicted to it.  I'm down to 1/2 of .25 a day, weaning off. Its been 3 weeks since the med change and they endo said it could take 3-6 weeks for the levoxyl to get out and the unithroid to start getting in, I don't feel any better, some days are okay but I camn't stop worrying about the meds not working or causing the panic like before.  The dizziness has me paralysed with fear of it never going away and me being disabled for life.  I know it sounds stupid but i worry.  I've had GAD since all this started in 1999 before they finally found out it was my thyroid that was the problem.  They kept saying the muscle aches then was fibromyalgia, its odd I feel like i did then, anxiety, panic, chills all the time, muscles aches, cold.  I'm also postmenopausal 3 years now.   My obgyn says the hormones don't just stop because the period did, she said with my thyroid meds off it effects everything.  Can someone please help me.  I am very worried.  I hope when I go back for my levels next week it shows the meds working some.  Can it take this long for meds to stop symptoms?  I read somewhere also that even when the blood shows thing it can take weeks for the body to get used to the levels before the symptoms start to go away, is this true?  IF anyone can help I would greatly appreciate it.

Thank you  

2

Hi Patty, I really feel for you, you do seem to be having a rough time with all of this. I'm not sure how much help I'm going to be as you've got a lot going on. One thing occurred to me, I had labyrinthitis which is a virus infection of the middle ear, which caused the room to spin, and on one occasion flip upside down! Really weird. It gets better on it's own with rest, though travel sickness pills helped. One observation I have is that you seem to have symptoms of both overactive thyroid and underactive thyroid at the same time, which makes me wonder whether your body is converting the T4 to T3 properly. This would mean the T4 would stay in your blood stream causing overactive symptoms (of which anxiety is one), and you wouldn't be getting enough T3 thereby causing underactive symptoms. This would also mean you wouldn't be metabolising the nutrients properly from the food you eat and would lead to vitamin and mineral deficiencies/low levels (which you have - vitamin D and B12). It is difficult to know whether this is a reasonable conclusion without blood test results for T4 and T3. Have you had yourbiron and Ferritin levels checked? Ferritin needs to be 70-90 for your body to be sble to process thyroid hormones. As you are low in vitamins D and B12, it would be worth getting the other ones that thyroid patients are often low in checked, specifically: iron, Ferritin, selenium, zinc, magnesium, potassium and calcium.

Also have you had your adrenal glands checked. This is another thing that can cause anxiety. Adrenal problems need to be corrected first before thyroid else thyroid goes haywire when given thyroid medication. 24 hour saliva test is reported to be the most reliable.

If your adrenals are ok. Has your endo considered NDT (natural desiccated thyroid)? It contains T4 and T3 as well as 3 other thyroid hormones T1, T2 and calcitonin. On the plus side, is that you have quick access to an endo that is willing to try different things. My thoughts are based on logic and 24 years experience of having an underactive thyroid, not any medical knowledge, but it may give you some ideas of what to ask the endo next time you see him.

Best wishes, Barbara

3

Hi Barbara:

Thank you so much for replying.  I was wondering if you can look at some results I have and help me out, considering they are from July and October of this year, July was when I switched from levothyroxine .88 back to levoxyl .75 because the levels just never stayed, every 3 months was changing dosage.  Can you tell me if the conversion is off in these results.  I don't have the results for the test done done in sept except for the TSH it was 1.40 and I don't think he checked anything else.  

July 20, 2015

TSH  3.49  range 0.45 - 4.50

T4     7.8  range 4.5 -12.0

T3 uptake 26 range 24-39

Free t4 direct S   1.19  range  1.2-4.9

T3   100  range  71-180

Free T3   2.5  range  20. - 4.4

In this time frame I was having symptoms of coldness, anxiety, increased hot flashes, in menopaus

Sept 25 2015

TSH  1.40  range  0.45-4.500

This is the first test on the levoxyl, at this time he liked the numbers

and I was having anxeity, but was under so much stress becasue of the vertigo we just assumed it was anxiety.  

Three weeks later around Oct 22 starting having symptoms just like when I originally was diagnosed with hypo,  leg aches, arm aches, coldness, anxiety, panic, couldn't handle stress, irratiable, dizzy, nausea, no appetite, neck and head pain to the extreme, fibromyalgia systems like I had in 1999 when all this was found

Did test and sent it to him

TSH 4.71  range 0.45 -4.500

T4   8.4   range  4.5-12.0

t3 uptake    25  range  24-39

Free Thyroxine index    2.1  range  1.2-4.9

On Nov 10th went into to endo's office because anxeity was uncontrolable, was histerically crying, and he said at this time he thought the levoxyl may have been bad becasue from Sept 25th to Oct 22 the level went from 1.4 to 4.71 he also said could be was no meds in the levoxyl, but no way to know that.  Now during the last 2 months I had trigger point injection in the upper shoulders and base of the skull because of the head and neck pain.  So he also thought the steriods from that could have gotten in my blood and casued the extreme anxiety he was seeing.  So he ordered some tests and a head ct to check. all the test came back fine.  I will give you the cortisol, vit d, types listed so you can help me with this to.

Sodium  142  range 135-146

Potassium   4.4  range 3.5-5.3

calcium  9.5  range 8.6-10.4

protein  7.0  range 6.1-8.1

Vt d, 25-oh total  24  range  30-100

Cortisol total  taken at 9:30 am  12.8  no range

At this time he put me on unithroid .75 which I will be getting a blood

test next week at the 4th week to see how its going and I will be seeing the endo.  I have ordered my own test for this appt and have ordered TSH, t4 & t3 and free t4 and t3.  

I would be so grateful is you could help me with the numbers I have given you and let me know what you think.

I have GAD so its hard for me to tell whats causing what anymore.  Normally I'm calm but when I got hit with the vertigo attack, I just lost it, I am so afraid of feeling dizzy for years.  I'm going to see the ENT soon I hope waiting for referral to get in.  

I weaned of the xanax and am down to 1/2 of .25 a day and having anxeity, so its hard to tell whats what,  I know in the moring i take my thyroid meds around 6 and I'm usually anxious about 45 mins after getting up at 6:45,   don't know if the meds are causing this.  

Anyway thank you again so much for listening.  If you have any help I would greatly appreciate it.

Thank you

Patty  

 

4

Hello Patty:

My name is Shelly and I am an RN -Nurse in the USA.  I have Hashimoto's Thyroid disease.

Benign Paroxysmal Positional Vertigo (BPPV) is a severe condition that causes you to be dizzy upon head movement changes and almost feels like a whiplash like if you were in a car accident.  It tends to bother women more and  can make it impossible to move around.

I used to work with a lady who had Meniere's Disease which can lead to this condition.  All of this has to do with the eyes and inner ear.  Sadly, even though you had treatment for BPPV it can return!  This is usually treated by a Neurologist or Ear, Nose, type of doctor. There is a medication called Antivert and it is for vertigo.  It can help.

You need to go slow in changing your thyroid doses.  So your TSH now is  4.71 and back in Sept it was 1.40 TSH. If I read it correctly. How long have you been on that dose?

Okay Xanax, is for anxiety, and it can make you very sleepy and I would cut it back to 1 a day.  Are you hung over in the morning or have you gotten used to it?

Sometimes some meds can build up on you and you build a tolerance and then it does not work well. Also space that away from your thyroid medication so that at least a 3 hour span of time between the pills.

Your potassium and sodium, calcium, and cortisol levels are good. Vit D is low but many of us as we age need this as we do not make Vit D from sunlight as well, and it has been linked to Hypothyroidism.  So I take 2000IU a day also.

I think most of the anxiety is from your BPPV condition and is understandable but you need to change hormone doses slow to avoid problems with swings in your TSH. It hits the body hard when a big jump is invloved in doses.

The body takes about 6 to 8 weeks to make a new level and I know we all wish it was faster in our fast paced life.

I hope I helped you,

Shelly