Gonna pull my hair out!!!!! Will life ever be normal again???

[dandydoodle]

I found out I have hypothyroidism about 5 years ago and had symptoms for a while before that. Now that I am on meds for it I can thinking eventually things are gonna get better. Well I guess I am better then I was 5 years ago but, I still feel I am on a roller coaster. My labs are now in the normal range but, I still have symptoms about 85% of the time. My dose for synthroid was 75 and 3 cytomel pills a day. ( sorry I don't know the dosages by heart. I will check in the morning if you need to know.) I was super sick and my doc kept telling me I was fine since I was in the normal range and kept pumping me up with zoloft and different things. I decided enough was enough and went to a endocrinologist. My knew Endo says she won't do Cytomel and made me stop. Oh yea, she also said that even though I was in the normal range I was to high for me according to my symptoms. So then I was on just the 75 synthroid, I felt okay for a couple a weeks and then I started feeling sick again. I think I was then low. Then she put me on 88 dosage on the synthroid. I was okay for a couple of weeks and then I started getting sick again, I think I might have been going high. She took me back down to 75 on the synthroid an basicly told me thats that and there is nothing that can be done I will just have to deal with it. REALLY AM I GONNA BE THIS SICK FOR THE REST OF MY LIFE???????????

Well I decided on my own I would take the 75 synthroid and just one of my cytomels. I was okay for a couple of weeks and now I think I am high again. Sorry I know this is confusing but, I feel like I am on a roller coaster and just not really getting better. If anyone has any suggestions I am getting desperate and would really appreciate any help. I am to the point I feel sick a lot more then I feel okay and I don't think I can even tell if I am up or down anymore. Does anyone know once they actually get you in the normal range how do you get to the point you are at a level that is good for you.

Sorry if this doesn't make sense, when I go high (or what I think is high) I get to the point I can't concentrate and have trouble reading.

Please help me if you know how.

[juliekaboolie]

I've been hypothyroid for 11 years, but I'm new to learning about this disorder. One place that has helped me to learn is stopthethyroidmadness. It has so much information. Maybe you can start there? My doctor recently put me on Cytomel in addition to my levothroid. She said I needed T3. I feel better for the first half of the day and crash for the second. I'm sorry I'm no help! Check out the website. Maybe your answers will be on there? Best wishes!!!

[watcher513]

dandydoodle, time for a Different Doctor, stat!

Julie, I split my T3 dose and take some in the afternoon. I don't get the slump like I used to.

[Leo41]

First of all, you should never, never self-medicate. Thyroid 'meds' are actually hormones, and they are very powerful. People have given themselves cardiac problems by taking thyroid hormones other than as prescribed by their doctor.

Secondly, did this endo say that she would not prescribe Cytomel at all--or just that she didn't think you need it? If the former, I'd find another doctor. There are endos that don't 'believe' in prescribing T3, but I'd be a basket case today without Cytomel. Any doctor who refuses to prescribe T3 really isn't up-to-date with thyroid treatment.

Since thyroid problems are for life, you need to find a doctor that you can trust and who will work with you to alleviate your symptoms. A good thyroid doctor will consider both lab reports and the patient's symptoms.

Also, keep in mind that some symptoms that may appear to be thyroid related can be from other issues. This is another reason to find a doctor who will work with you to find the cause of your symptoms.

[dandydoodle]

I really don't want to self medicate but, I am getting desperate here. As I said I am sick at least 80 to 90 percent of the time. I am so tired of being sick. I just don't know how to find a good doctor. The first endocrine doctor I had would take my labs give me medicine and would not listen to me at all. I got frustrated and quite going to an endocrinologist. My health care practictioner started taking care of it and she just kept saying I was in normal limits and should be fine and pumping me with depression meds. I finally went and tried another endocrinologist. When I went in she told me that we were going to stop my cytomel that she doesn't work with them at all. So stopping has to do with her beliefs and not anything to do with my labs. I was gonna stay with her because, she was at least trying to find my normal with in the normal range but, I feel since she won't do the cytomel she isn't going to be able to make me better. How do I find a good doctor. I just want to throw up my hands and give up but, I can't I have kids that need me. How do I get help. If this doesn't make since I am sorry, I am really sick right this moment.

[brandywine12]

I just want to ask you , do you have your lab results with their ranges?
How often are you getting your meds decreased or increased?
Have you ever had your vitd3 and ferritin levels checked?
Do you still have your thyroid?
How old are you?
Do you consume any soy products ,do you have any dairy with or after you take your meds, or before , say around 4 hours before or after, or iron supplements?
It means a lot if your doing any of these things . I take my meds at night , but I am only on t4 meds as I convert over just fine.I don't have a gland due to having RAI like over 20 years or so.Self medicating is a big NO NO! You will never get any where doing that.
I had a dr one time actually get mad at me because he wanted to put me on anti depressants , I miserably failed his test,(3 of em) lol! I was seriously under medicated, so yeh I was depressed, but after I had switched dr's , the new dr upped my dose and I felt better right away. So No anti depressants for me! It isn't always the way to go(meds for depression). Thyroid disease can KICK yo BUTT!!No joke. But you need to be your own advocate and take the bull by the horns and research thyroid disease and what it does to your body.
You say your in normal range....is that what your dr told you? normal for some may be ok , but for most it isn't , it is like a setting on a hair dryer.Every one is unique and needs some thing different for their own selves.
I am sorry you feel like garbage,it will get better.It doesn't change overnight or next week , it takes 6-8 weeks for you to see and feel any difference, sometimes it can take a lot longer to feel well . I know I have been there and done that.
When I first got ill with this disease, I was ill for like 18 -24 months , all along , I didn't know what what causing me problems , until one day I couldn't breathe, I was going to a have a major explosion , (dr said my heart was ready to burst). I was really hyper. Heart was going all it could go and was getting to the point of heart failure, I had graves.So.... for me it took all of those 2 years to even start feeling better, I thought I would never see the day.So , it takes time and stop playing with your meds! btw...generic drugs about killed me too , so I am on brand only...fillers and colors can have a affect as well. generic wasn't very consistent , my labs were all over the place with that stuff. I hope this helps you and you soon start to feel better
another thing .....endos aren't always a good dr, I was to one in the very beginning and he said I was too fat that I needed to diet, I was severely hypo , after the radiation, gained all of the 65 lbs I had lost being hyper, and then some. Needless to say I left and never went back!I have been to at least 9 different drs trying to get better.I could never lose any weight since then , but w/ atkins and the right dose I am losing weight and feel good Most of the time. Carbs are my enemy as wheat is.

[Leo41]

Dandy- Do you have a local pharmacist that you can talk to? One way to find a good thyroid doctor is to ask the pharmacist if he knows any doctors who are prescribing Cytomel. I mention that because, as I've said, anyone who prescribes it is probably current with thyroid treatment.

An alternative is to simply tell the pharmacist that you're looking for a good thyroid doctor and ask if he has any recommendations. Pharmacists are usually familiar with all the local doctors--and they know the medical aspects very well.

If that won't work for you, do you have any friends who are being treated for thyroid conditions? I've had several friends ask me about my endo because they know how satisfied I am with him, and you may know someone who has a good doctor.

[dandydoodle]

leo41

Yes I have a pharmacist and I will ask him.

No, I don't have any friends with thyroid problems, so I don't have anyone who understands what I am going through and no one to really go to for advice.

[dandydoodle]

brandywine 12

Yes I drink milk. I don't usually eat soy but, I have lately. I didn't realize these things were a no no.

I know that I need to be my own advocate and I have tried. The problem is when I am sick I have a problem thinking clearly. Sometimes when I read I can't concentrate ( I think this is when I am on the high side)

I have been fighting this for a long time. I was fighting it for a few years before I even knew why I was sick. When I first started getting sick I would go to my general practictioner all the time and tell her I was having problems with depression and gaining weight like crazy. She would just prescribe me antidepressants and tell me I needed to eat better and work out more. Why I was working out all the time and still packing on the pounds. She would just tell me obviously I wasn't work out hard enough. I finally found out what was wrong with me when I went to a gastric doctor to check into have weight surgery. He ran a lot of tests and informed me I had hypothryroidism. That general practitioner was immediately history.

Then I went to the endo who wouldn't listen to me. Then I didn't care to see an endo and my new general practictioner seemed to at least listen to my symptoms and she claimed she was able to take care of these things. She did get me with in the normal range but, I have still been so sick. She just kept telling me I had other issues and needed antidepressants. It is obvious to me no one has found my normal with in the normal range. So I got frustrated with her and found an endo. She made me quit my cytomel and all that has accomplished is helping me pack on 10 pounds. After she took me off the cytomel, I started to seem low on synthroid 75 and then she upped my meds to synthroid 88 then I started to seem high. So she took me back down to 75 she told me I would just have to be happy with the way I feel on Synthroid 75 with no cytomel. I am still gaining weight and feeling sick. That is when I decided to add back in one of my cytomels ( I use to be on 3 a day). This has all happened in about the last 4 months. I am really starting to have a hard time telling if I am high or low these days. The symptoms seem to all be running together. The only reason I am pretty sure I am on the high side now is my heart races some times.

I know the being in the normal range isn't good enough but, I have no idea how to figure out what my normal is. I keep going to different doctors hoping they can help me but, they seem useless and I really don't know how to find a doctor that actually knows what they are doing.

I am 37. I have all my vitamins checked on a pretty regular basis and my ferritin. I have had a duodenal switch and they have to check those things because, of that. I had gained up to 260 with my thyroid.

Thyroid disease is kicking my butt and I want to fix it but, it all just seems sooooo complicated. I feel like I am on a roller coaster ride with all these symptoms.

[dandydoodle]

Thanks everyone who is trying to help me

[dandydoodle]

Does anyone on here that has a good doctor live in Georgia?

[watcher513]

dandydoodle, could you please post your lab results with the ranges for whatever tests were run - example:


Free T4 xx (x.x - x.x)
Free T3

I may have missed it but were TPO Antibodies run to check for Hashimoto's?

[dandydoodle]

I will print all my results in just a second. I got my endo t email me all my results today. She has tested me for Hashimoto's before and she told me that I do not have it.

[dandydoodle]

OKay, I will right down all the results for all the tests she did cause, I don't know what is important and what isn't. I know I listed a lot of stuff but, I didn't want to leave anything out in case it is important and since my endo ordered these I thought it might be important.

Thanks,
Michelle

free testosterone 2.81 range (0.50-2.80%)

testosterone, free 0.56 range (0.10-0.85 ng/dL)

Calcium, Serum 8.7 (8.7-10.2 mg/dL)

Glucose, Serum 81 (65-99 mg/dL)

BUN 12 (6-20 mg/dL)

Potassium, Serum 4.2 (3.5-5.2 mmol/L)

Sodium, Serum 138 (134-144 mmol/L)

Chloride, Serum 104 (97-108 mmol/L)

Creatinine, Serum 0.48 (0.57-1.00 mg/dL) L

Carbon Dioxide, Total 23 (20-32 mmol/L)

BUN/Creatinine Ratio 25 (8-20 ) H

Prolactin 8.2 (4.8-23.3 ng/mL)

LH 6.2 ( mIU/mL)

FSH 11.0 ( mIU/mL)

Thyroid Peroxidase (TPO) Ab 9 (0-34 IU/mL)

T4,Free(Direct) 1.23 (0.82-1.77 ng/dL)

ACTH, Plasma 5.0 (7.2-63.3 pg/mL) L

[watcher513]

Mid-range for FT4 is 129.5 with those ranges (which can vary per lab). So you're a little under the mid-range which may be just find for you. It's so close I'd call it good but everyone's different.

Interesting that no T3 was run at all, specifically Free T3. That's an important one (lack of it is a culprit for low/no energy/fatigue), and at times difficult to get run. That's why many of use get our own tests run (Thyroid Panel II, TSH, FT4, FT3) via healthcheckusa online with code 12345 for a 10% discount. I'd be asking for a FT3 test with the FT4 if your doctor will run them. I bet your FT3 is low though.

Your ACTH is low also from the results (adrenals). I won't comment as I've not had to deal with that and don't have the knowledge like others here do.

[Beezer Louisiana]

I'm sorry you are going through this.

The only thing I want to add is that if you are using GENERIC Synthroid, maybe try the name brand. I was having bad results with the generic because CVS changed generic brands (and couldn't guarantee me that they'd stay with the same generic brand) so I was getting slightly different dosages with the different generic brands they were giving me.

My endocrinologist now specifies "NO GENERIC" and I get Synthroid name brand (about $30/month) and it's been smooth sailing since then. I also take name-brand Cytomel. It costs me more, but I know that I'm getting a consistent dosage now.

You also mentioned an antidepressant, has your dr. talked about Wellbutrin instead of Zoloft? Wellbutrin XL did the trick for me, when all my thyroid levels were finally in optimal and I still felt like crude scraped from the bottom of someone's shoe --- Wellbutrin gave me the lift to FINALLY feel normal again. (I'd tried Prozac before, I think it's in the same family as Zoloft, and it didn't help.)

I hope you get your levels in the right place for YOU.

[brandywine12]

well , you need to dump the soy! it very well can be causing some of your problems and if your drinking any dairy make sure it is at least around 4 hours before you take your meds.

Soy blocks at a cellular level, so does the dairy. I have a friend who was doing this for about a year and she gained weight like crazy and was sooo tired, she was actually drinking soy milk w/ her meds,she didn't know any better. She was also taking the generic meds which I think added to the misery.

I hope you get better soon.Find a good Dr, I know they are few and far.
Btw , some anti depressants can cause problems with weight gain.

[poe2you]

dandydoodle..
hugs to you. i know what your going through.. i am so sick of trying to find a dr that gets it.. i had a dr. give me cytomel.. but still has no clue.. she told me to exercise more..while she had a good 75 lbs on me..i keep on going trying to find a dr that knows i'm not lying when i walk 3.5 miles a day.. no soy.. never miss my meds (synthroid 112mgs).. i'm at a loss...

seeing a new dr. next week.. i keep hoping for the best.... sharon