# last ditch effort



## readytolivenormal (Aug 4, 2016)

I am new here and I have been reading the board for the last several weeks and am happy to see such an informed and supportive community!

I am going to apologize upfront for the long post 

I have been extremely tired-- to the point of being able to sleep any time I get the chance. I have always been a "sleepy" person but it has been extremely bad over the last 3-5 years. I have gained about 60 pounds in that time. Some other symptoms include: cold hands/feet, constipation/diarrhea, foggy brain-which has seemed to lead to minor memory issues, menstrual issues, hair loss, and joint pain. There are others but these are my "major" complaints.

I started with my PCP about 3 years ago, basically did a ton of labs, told me I needed to lose weight and that would help....only problem is that I have tried everything, traditional and trend diets, diet pills (under Dr. supervision), low calories, etc and I can't lose anything. My labs came back normal and I will list those at the end of the message.

In the meantime, I had noticed some hair growth, hair loss, and more weight gain. My GYN suspected it was PCOS, never did any formal testing, but I had a "diagnosis" of PCOS.

I finally ask my PCP to refer me to an endocrinologist. He says that an endo won't take me as a patient. I search and find one that will take me without a referral. I ask him if it could be a possible thyroid issue and he tells me that my TSH is the ONLY number that counts and that is fine. He does a sonogram on my thyroid and see a small spot but can't identify it due to the small size. He says he will watch it to ensure that it doesn't increase in size. This was last June and he hasn't done another sonogram. He puts me on metformin and tanzeum for the PCOS because he says that I am insulin resistant, meaning I make insulin but my body doesn't know what to do with it. I actually did lose about 20 pounds since being on the meds. However, I tell him that I am still tired and started having menstrual issues. He says that isn't his area and to talk to my GYN. I thought that endos were over hormone function so that kind of upset me.

The next year passes and I see my PCP again. I am still tired and now heavier....he wants me to see if I have sleep apnea. I end up having mild sleep apnea. I am on the CPAP machine for about 9 month and still see no relief. I got referred to a sleep doctor and he told me that I needed to do another sleep study with a daytime study. The daytime study showed that I fall asleep for daytime naps in an average of 4.5 minutes. This was determined over 4 naps. I am diagnosed with idiopathic hypersomnia (IH) , which to me means--yes, we can confirm that you are very tired but we don't know why. I have been being treated for IH for about 4 months. I started off with Ritalin with no relief and then they added modafinil. The dosage for the modafinal has been increased to the max dosage of 400MG and I take 20MG of Ritalin twice a day. I still have no relief and this sleepiness is excessive. It is to the point that I am scared that I will fall asleep in meetings, at work, driving, etc.

My problem is that I am have been wondering all along if the various doctors are treating my symptoms and not the problem. Everything that I research points back to hypothyroidism but my labs are in the normal range. I know that many doctors will not treat if the results are normal. I have been referred to another endo and see her in a few weeks. This is my last chance and I hope that I won't be written off as a hypocrite once again. I want to be prepared for my appointment and wondered if you all would mind looking at these labs. Please note that they are about a year old.

I am having problems pasting so I will am going to shorten the labs. If there is something that might be missing, please let me know and I will see if there were any labs for it.

NameTestost total


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## readytolivenormal (Aug 4, 2016)

testos total 28 2-45

testost free 1.3 .1-6.4

free t4 0.9 0.6-1.6

TSH 1.3 0.3-4.0

t3 free 2.7 2.3-4.2

cortisol AM 23.1 6.7-22.6

lyme <OR=.90 <or=.90 negative;

K 4.2 3.5-5.1

CL 106 101-111

Sorry, I didn't mean to post before adding!

Thanks to you all for your help, it is very much appreciated!!


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## joplin1975 (Jul 21, 2011)

Hi -- I'm sorry you feel so poorly.

You free t and free t3 are very low. You are definitely hypo no matter what your TSH is.

I think I would ask that they test your thyroid antibodies, including TPO, Tg/TgAB, and TSI.


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## readytolivenormal (Aug 4, 2016)

Thank you very much!! I will definitely request this and will update the post once I have my appointment.


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## readytolivenormal (Aug 4, 2016)

I had my appointment this past Friday and was vey discouraged. I was told the typical line, exercise...lose weight...depression. She was a very nice doctor but I could tell she definitely was going to focus on ranges only.

I have my lab results back on what the doctor was willing to test.

thyroid peroxidase antibody <3 range <6

TSH 1.167 range .3-5.0

T4 free 1.0 range .7-1.9

Vitamin D Hydrox 41 range ????

Assay Ferritin 35 range 5-204

Iron Saturation % 16% range 15-62%

I am supposed to do a 24 hour urinalysis for cortisol levels. I am not sure what that will show. A sonogram will be scheduled to review the "spot" on my thyroid. So where do I go from here? Also, what is the 1st result supposed to show?

Thanks for your help!


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## Pamzilla13 (Sep 9, 2013)

Get another opinion. Try to find a naturopath or a doctor that deals with bioidentical hormones in your area. They tend to be more open minded.

(from my experience)


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## Octavia (Aug 1, 2011)

Your Ferritin and iron saturation are both very low. Anemia?


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## jenny v (May 6, 2012)

Yep, sounds like the typical "focus only on TSH and only on the range" doctor. I would definitely search for another one while waiting for the ultrasound.


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## readytolivenormal (Aug 4, 2016)

Thanks to all of you for your insight. I am having a hard time finding a doctor that will look at anything other than the ranges. I have been to several doctors and honestly my husband will freak if I continue down this path because I told him that I was done searching for answers and have to accept what the doctors are telling me.

Octavia, I had no idea that the iron sat and ferritin were even connected. I pulled the lab results from a patient portal so I am not sure if my doctor has reviewed. My first thought is that she won't do anything since both are within range but I could be wrong.


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## BurntMarshmallow (Feb 26, 2016)

I had no luck with doctors, so I have spent the past year researching (luckily I didn't have a regular job so I had lots of time).

Everything I've tried involved food and supplements, and has been based on studies like this one: http://www.ncbi.nlm.nih.gov/pubmed/23378454

I don't like endocrinologists who only look at TSH. But unfortunately T3 is also very hard to measure because it changes hourly. It also is easily influenced by daily habits and varies naturally from day to day. It's not a good measure for those reasons. T4 measurements have drawbacks as well. Free T4 is influenced by estrogen levels which vary through out the cycle. You can have low T4 for parts of the month but if you have blood drawn after ovulation, it might come back in the normal range.

The pituitary controls TSH. If TSH is normal but you still do not feel well, it can be that the pituitary isn't sending enough TSH to stimulate the thyroid so that you feel well. This is called secondary hypothyroidism. Endocrinologists think this is very rare and only happens if you have a pituitary tumor. But from my own survey of the research, I think this is more common than is generally thought. Zinc deficiencies are known to reduce pituitary activities and also cause hair loss.

What are your other symptoms specifically? How is your night vision? Zinc is needed to make retinol binding globulin for moving vitamin A around the body. It also carries T4 around too. If you don't have enough Zinc, you will usually have some skin problems like acne and hair loss. If it's been going on a while, you can have a functional vitamin A deficiency, which causes night blindness.

I could go on and on here, and don't want to bore you. But my message is basically to tell you not to give up. A nutritionist might be your best bet for help with your issues. Not a weight loss person, but someone with deep knowledge of food, vitamins and the body.

I'd start with zinc 50mg, plus 3mg copper. Try it for a week and see how you feel. A B-100 complex also. After a few weeks of zinc, ask to get your TSH checked again. It may rise due to zinc allowing the pituitary to raise TSH.


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## BurntMarshmallow (Feb 26, 2016)

Another thing to consider that affects the pituitary and reduces thyroid function is fluoride. Our city water authority recently reduced the fluoride they add to the water over new research in this area. High levels of fluoride are also found in tea and grape juice (in much higher concentrations than city water). If you're fond of green or black tea, try giving it up and see how you feel.

http://www.newsweek.com/water-fluoridation-may-increase-risk-underactive-thyroid-disorder-309173


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## blackngold (Oct 28, 2011)

Yes definitely take some iron


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