Two Q's - TSH & Alkaline phosphatase

[Elisa]

Hi all,

I have been in and out of the ER three times in the last three weeks for fainting - severe spells. fainting occurs when I am asleep (about three hours after I fall asleep) or just about to wake up. I also have rotating shaking chills that paralyze me and drenching sweats all day and night - am dehydrated no matter how much I drink. Had a fever and severe vomiting first run to ER of 103.6 - just stumped.

Docs have been all over the map - basically no idea. My cardiologist asked me to get to the bottom of it - if its an infection...

Thought it might be hypoglycemia (need to eat every few hours even in bed).

My two questions regarding blood work are:

Can TSH fluctuate wildly and be normal? My TSH is .01 to 6.0 (both abnormal).

And has anyone had elevated alkaline phosphatase?

All docs do is say to me - exercise, or antidepressants...nice.

I do have pots and low bp too - but to have these severe fainting spells where I cant even react but call 911 - is terrifying.

I welcome any ideas or thoughts. And thank anyone for help!

God Bless,

Elisabeth

 

[Sushi]

Hi Elisabeth,

So sorry. Having to go to the ER is so scary. Do you have a doctor for your dysautonomia?

As far as the TSH, what does your doc say? I don't think fluctuating like that could be normal. How fast does it fluctuate?

Best wishes,
Sushi

 

[Elisa]

Thank you Sushi - you're always such a life-saver - so grateful for your reply.

I have had dysatonomia, forever - have been able to manage fainting with high salt diet and lots of fluids (water) and special stockings. Things go awry when I get an infection of something else comes up - generally no one can figure it out. Its distressing.

I am member of www.dinet.org.

I was TSH 6.0 a few days ago and now at 2.0 - its fast up and down - mostly above or below normal range. Just cant imagine that is okay?

Here are my TSH:


3/2/07 TSH 2.040

3/7/07 TSH 2.53

4/15/07 TSH 2.19

8/27/07 TSH 1.660

11/06/07 TSH 2.120

4/08/08 TSH .02

4/29/08 TSH .21

5/19/08 TSH 3.54

1/23/09 TSH 3.56

9/28/10 TSH 2.29

8/13/12 TSH 4.20

12/27/12 TSH 1.31

5/20/13 TSH 5.93

5/28/13 TSH 2.00

I just dont get it? Forgive me, I am so tired I am not even me today.

Take Care,

Elisabeth

 

[Sushi]

Yes, weird! Are you taking any supplements or meds that could be affecting thyroid function?

Have you seen an endrocinologist?

Sushi

 

[Elisa]

I take lots of vitamins - not sure which ones would affect TSH? Nothing new recently.

I have seen two endocrinologists - in the past - they generally refer me to a therapist/shrink - no matter how out of range my TSH is - I even have nodules and swallowing issues - they seem uninterested. That is the case for my docs in general, sadly. Have been thinking of moving near good CFS doc.

I need to do something.

Thanks Sushi!

Elisabeth

 

[Sean]

Raised alkaline phosphatase is quite common in ME patients, every time I get mine measured it comes back raised.

A useful research finding, but not of much value in suggesting therapies, at this point.

 

[BadBadBear]

Elisabeth - have you been tested for Hashis and Graves antibodies? I have read that people can have both autoimmune diseases concurrently and that it can cause huge chaos in the thyroid numbers. Your numbers sure make me wonder if it's possible that you are experiencing them both...

 

[alex3619]

I strongly suspect elevated alkaline phosphatase is usually related to gut problems in ME. In particular to LPS reaching the blood stream.

 

[Valentijn]

Regarding the possibility of low blood sugar - you can get a testing kit (Bayer Contour with 10 testing strips and 10 lancets) for under $10. Then you can see what your blood sugar is doing in the morning, and/or set your alarm to wake you up a few times one night to find out if something's going on.

 

[xks201]

TSH is useless. Test Total T4, total T3, free t3, and free t4. Sounds like you have diabetes insipidus symptoms. Sounds like your pituitary is off and you need replacement pituitary hormones potentially. Find a better endocrinologist - maybe an ivy league university type one. Your average endo will not want to help (because they are dicks).

 

[Elisa]

Thanks for the imput - so grateful...

I have read the AP is high in ME - interesting that it may be from the gut.

Endos in my area just refer to shrinks - no matter how high or low my TSH is...what in the world can I do. It's insane.

Wish I could get these drenching sweats under control - they're messing me up in a thosand ways - they're dehydrating and just uncomfortable having wet clothes and hair day in and day out - arghhhhhhhhh.

I imagine many of the issues are dysregulation - but why now?

This whole spell came on after what looked like food poisening or gastroenterovirus - I just cant kick it.

Diabetes inspididus is an interesting take on this - I often wondered if I had this - as I had a brain injury 15+ yrs ago.

The sad truth is I cant frankly talk to any doctor about anything - they just are not willing to help beyond their 2 appt limit. The first appt they make the most $ as I am considered a new patient and the second appt they make slightly less - and any appt thereafter is very little cash - so I get no appts - and no indepth or comprehensive help. Its a sad state of affairs in medicine.

Elisabeth

 

[Sushi]

Elisa

Maybe you will have to look further afield for a knowledgeable ME/CFS doc. A lot of us do find that we have to travel. Otherwise we are spinning wheels, sometimes getting treatment that makes us worse, and always paying out money for nothing--and getting frustrated and mad!

Sushi

 

[Elisa]

Thanks Sushi...that is excellent advice!

Who do you think are the top CFS docs - I am in Ohio. I guess maybe NYC is closest...

Do you or anyone have any suggestions?

Thanks so much,

Elisabeth

 

[Sushi]

I think it depends on your particular condition. Do I remember that you have dysautonomia? Dr. Blair Grubb is tops in this area and in Ohio, though he treats pharmacologically, mainly.

Otherwise, there are docs who specialize in viruses, immune function etc. Most of them have been discussed here. Unfortunately many have longish waiting lists. I go to Europe myself.

Best,
Sushi