I found out I am not crazy!

[vakinderegg]

Finally , I was able to see an Endocrinologist for my thyroid problems(tsh was 60 in 2005 before I was diagnosed....doc told me to workout more to lose weight and get more energy and gave me diet pills!) after 4 years of complaining. I have so many weird symptoms I think all the docs I saw thought I was a nut. My symptoms were fatigue, weight gain, carpul tunnel syndrome, ankle, hand , hip, and shoulder pain,shin splints, tiny white spots all over my body, severe constipation, hair loss, mood swings,pelvic pain, and a lot more I can't think of. Each doc I saw treated me for something else....said I was menapausal and my thyroid was fine because my tsh and t3 and t4 were in normal range. I still felt horrible. After years of crying I went to an Endo  a few weeks ago and he  tested me for Hashimoto and low and behold (on Wednesday I got my results)that is what I have with a hypothyroid, vitamin D deficiency, and very low estradiol levels <5. Since I had to take my 5 year old child with me to this appointment I missed some of the doc's explainations.....I have some tests I am not sure of.... I did have a thyroid ultra sound and I do have some several small nodulars on thyroid. When someone taps my neck or the hairdresser puts a smock on me I feel like I am being choked.

thyroglobulin AB Scrn, s 35.9
thyroperoxidase ab 66.97
cortisol 6.7
albumin 4.9
thyroglobulin tumpr marker s ,thyroglobulin ab scrn, s 24.3

Is the white spots on my body from Vit D problems or Hashimoto?

Having Hashimoto did that give me a higher risk in getting Epstein Barr.I had it 2 years ago and the docs just thought I was perimenapausal and also needed my synthroid RX changed.

I am now on 3,000 iu of D3, 125 mcg synthroid, 0.5 estrogen patch, and I take chewable calcium with D&K

I  have Gerd so I am on nexium and for constipation (low midility) amitza 24mcg 2x daily align, and Activa yogurt, miralax.

I would appreciate any comments. It is a relief to find out I am not crazy.

[Galsal59]

Yes...where is Dr. House when we need him?  I appreciate that the character is a fabulous diagnostician despite the personality.

[vakinderegg]

I am so happy I am not alone. I think I have been driving my husband crazy. Does your ankles, feet , hands, and wrists hurt? As for my white spots I think my doc said it is because of my immune system. In the mid 1980's I was diagnosed thu a HMO with Myasthenia Gravis. I took handful of meds for all my symstoms. In from 1985-1992 I thought I had MG and then a doc said there was no way I had this disease and took me  of all meds. I never had MG symptoms (just when I saw the HMO doc from 1985-1989)From 1989-1992 I saw several docs because I lived in Seoul,South Korea. I was teaching for DOD. My new endo doc said I probably never had MG as my last neuro doc said as well.Last time I went to a neuro doc was in 1994 and he said I was misdiagnosed! I have not trusted docs because of what I went thru years ago. I was admitted to the hospital for too many doses of meds, surgery on my eyelids, and I could go on and on....as well as being young, active and single and the thoughts of what guy wants to date a woman who might be wheelchair bound!

I think I finally found a doc I trust and listened to me...he even said I might have had hashimoto and hypothyroid in 1985 and many of my symptoms mirrored MG .

I can't wait to feel better! Just thinking about it makes me feel better already.

Carla, My TSH, t3 and t4 have been all of the place too. Are you going to an Endo? Many months they were all in the normal range , but I felt like ****. We all need Dr. House who draws diagram or a list on a board to figure out all the symptoms and then figures out the problem. Do you watch the show HOUSE?

Thanks ladies! :)

[Galsal59]

glad to hear it's working out for you.  have fought for quite some time to even get the Totals and Frees tested myself.  lo and behold...although in the "normal" range, they indicate thyroid's just not working at a good functional level.  ft3 21% and ft4 40%  and tsh has been steadily dropping since march.

will discuss it next week with dr, who usually is pretty good about checking different things out on me.  we'll see.  

[carla559]

Hi  - I found your title amazing......right now I am going thru the medical crapola
Have lowT3 with normal TSH and T4.  Almost had to beg for thyroid profiles and
between 2 MD's they don't think my T3 levels are an issue.  I sure have suffered
for about 4 months now and one FT3 came back 200 on a scale of 230-420
and the most recent one was 2.1 on a scale of 2.3-4.2.   I was taken off of
thryoxine after changing MD's and was only on it for 2/12 weeks.  I was starting
to feel a little bit better but shaky I expected him to cut it back from 50mcgs to 25 mcgs.
Instead he pulled me off of it altogether.  It has been since 8/21 and I am starting to
feel a little worse again.  It has been very frustrating and keeps me from a normal
life style...........almost tempted to try to take a reduced dose till I get to see an
endo in October.................this has been a hard year and I know what you mean
about crying  txs, Carla

[redheadaussie]

Welcome to the huge sigh of relief of the non-crazy people! Took me over 15 years and many many crying sessions and questioning my own sanity to find I did indeed have a thyroid problem!
  The white spots you mention could be a fungal infection. It doesn't seem to be a Vit D issue or Hashi. (I have low Vit D and also Hashi's) This is likely as having Hashimoto's suppresses your immune system, giving people all sorts of intriguing things to deal with!

Too often the doc's don't put the dots together and see the picture that is forming. Thyroid is related to just about everything in the human body and far too many underestimate its value.

Glad to see you are now educating yourself to live with your new found 'friend'

Cheers!

[vakinderegg]

Thanks! My endo raised my synthroid to 125 from 100 mcg. I can't believe all the signs and symptoms were there and no one put the puzzle pieces together. I am so happy I am not freaking crazy! Epstein Barr and Hashimoto ..very interesting! I will mention this to him on my next appointment.Hashimoto, hypothyroid , and goiters run in my family...including my grandmother who had thyroid cancer, hypothroidism, and a large goiter. Most of my cousins and aunts have thyroid problems including Hashimoto..

I can't believe I probably have had this for years. I had problem conceiving and carrying a baby. I had to go to a fetility clinic and spend lots of money thru IVF to conceive. Only if someone would have check all my levels including all tests for Hashimoto too!

Yes..it is the docs who are crazy for not believing their patients when they say they feel horrible ever day! I was actually scolded from one doctor saying I was there to see her for my thyroid why was I complaining about other problems not related and she ordered a tsh test and walked out of the office! This was a military hospital in Germany!

Thanks!

[Smilerdeb]

Isnt it great to find out that the crazy ones are the Docs and Endo's ! lol
You will be fine......you have learnt the most important thing in thyroid issues..

IF YOU DONT FEEL RIGHT.....then you probably arent as you know your body better than any Doc or Endo.

Welcome to the real world :)

[laura1967]

Actually it is written in the New England Journal of Medicine that Epstein-Barr Virus is one of the causitive factors in developing Hashimoto's. (Myself included)
My endo said it is very important to keep your TSH supressed and your FRee's in the mid normal range at least. This will help your body to start healing.
You should start feeling better soon with increase, Vit D, etc.
Hope you feel great soon!

PS- Taking estrogen will increase your need for more thyroid meds in most cases.