New Here & Need Some Help (sorry this is long!)

[KellyWPA]

Someone sent me the link to this site and I see there is a ton of useful information here!

I have had hypothyroidism for about 10 years now. Up until this year, my TSH was running about 2.5. I know that is high for a lot of you, but I was able to manage with that. Although after reading the posts here, I am wondering if the tiredness I thought was something else, was really my thyroid.

I am also a Type 1 diabetic - the autoimmune kind. Although I have not been tested for it, I suspect I have Celiac’s disease - I discovered that by accident and have been following a gluten free diet for about 1 ½ years now. More recently, I have become lactose intolerant and see from a link on this site that could be because of the thyroid problems.

When I was first diagnosed with hypothyroidism, I was put on Synthroid. After a year of going no-where, I was put on Thyrolar. That seemed to really help until they took it off the market for awhile. My doctor put me on the generic Synthroid and Cytomel. At that time, I started having seizures and we discovered it was the T4. Even when Thyrolar came back on the market, I was not able to take that. Since then, I have only been taking Cytomel.

Late April, my TSH was 11.302 (reference range 0.450 - 4.500). My Free T4 was 0.83 (reference range 0.61 - 1.76).

I ended up switching PCPs because I had to get a doctor I was seeing for another problem to up my Cytomel. I had been taking 5 mcg of that and the other doctor upped it to 25 mcg for me.

My new PCP rechecked my levels late July. At that time, my TSH had dropped to 4.53 (reference range 0.35 - 4.94). My Free T4 was now out of range at 0.49 (reference range 0.7 - 1.48). Her office told me everything was normal so I asked to make another appointment and go in to talk to her. She agreed to work with me to get my TSH below three. She then upped my Cytomel to 30 mcg - the script was written for one 25 mcg and one 5 mcg. I was supposed to go in one week before my appointment in 3 months to get it rechecked.

I had the labs done but they needed to change my appointment with her. When I called to get the results, my TSH dropped to 4.35 and my Free T4 dropped to less than 0.40. Both have the same reference ranges from the test in late July.

I told her staff that she said she would work with me on getting my TSH down and I did not have to want to wait until my rescheduled appointment to talk to her about it. They said that they would check with her and call me back. Now I am being told. Her reasoning now is that my protein levels were supposedly low and my thyroid is secondary to the protein levels. I have two problems with that reasoning. The first being that they only checked thyroid levels in Oct. If protein levels were an issue, they should have been addressed when I talked to her the beginning of Aug. The second is that I have had issues with protein levels in the past and although I know they can affect thyroid levels, I had had lower TSH levels with low protein levels. Due to some kidney issues with diabetes, I can’t overload on protein. I currently eat about 73 grams of protein per day.

I was obviously not happy when I talked to her office. I asked to get copies of my labs which I finally was able to yesterday. They did not even check my protein levels - I called them to make sure that there was not another report that I did not get and the person I talked to yesterday said she can’t find where it was checked either and was not sure why I was even told that.

It is good that I asked for the reports because when I checked on thyroid levels both in Aug & the most recent time, I did not ask about the Free T4 because even when my TSH was over 11, the Free T4 was normal. Even with the increase in Cytomel, it keeps dropping. Those were the only thyroid tests that either doctor ran.

When I was there in Aug, she pointed out that my CO2 levels were high and thought that I might have sleep apnea. She wanted me to have a sleep study done. I agreed and did the first part of that. They wanted me to have a 2nd one and that was actually scheduled for last week. I cancelled that when I started getting jerked around with this thyroid stuff because I had already read that one of the causes for sleep apnea is hypothyroidism. I do believe that when my thyroid gets fix, that problem will also get fixed.

I have the normal laundry list of problems associated with hypothyroidism. My biggest gripes are weight gain, lack of energy and memory problems. I have had problems with low blood pressure since this spring. Up until then, I had been on meds for high BP. The past few months, my BP has been swinging from low to high every day and I quit taking the BP meds because it is so low (like 80/50). I have now become lactose intolerant. I apparently have sleep apnea and who knows whatever medical problems triggered by the thyroid. Since Feb or Mar, I have had kind of a sore throat and my neck feels strange - I am sure that is the thyroid. And no, I have not had an ultra sound done.

I obviously need to find an endo. I did make an appointment with someone but have to wait until the end of Dec and don’t even know if they will do anything to help me or give me the usual line, everything is fine! If anyone can suggest a good doctor in the Pittsburgh area, I would appreciate it.

Up until this morning, I had been taking my Cytomel in the morning. I see from this board, that needs to be divided up. My script is written as one 25 mcg and one 5 mcg. This past week, I started taking 2 of the 5 mcg just to try to improve things a little. If she won’t change my script next week, I will be in trouble but will worry about that later! I can try to take the 25 mcg in the morning and the other one at dinner.

Any help or suggestions anyone can throw out would be greatly appreciated!

[nonstickpam107]

Obviously you are equating your TSH with your thyroid. TSH is your pituitary function, and over a 1.5 would be miserable. For a human being.

I spent years in the Youngstown/Sharon PA area with NO treatment (and a lot of 'bull'...it was this, it was that, blah blah blah...it was Hashimoto's). I'm hoping someone in that area chimes in here and gives you the name of a good thyroid doctor (one who KNOWS that JUST taking T3 doesn't usually 'cut it' for women...and that Rx's natural thyroid, whether it be Armour, Westhroid, Naturethroid or compounded natural..I"m allergic to synthetic T4 myself).

I don't give a thought to those doctors who go by TSH and I give even less thought to patients who think that 'TSH is everything' (I'm sure you know that by now, heh heh). It is your Free T4 and Free T3, your progesterone, your Vitamin D, your lifestyle (exercise, eating, etc.) and the fact that insulin resistance and diabetes are linked to thyroid disease and MALtreatment of such.

Keep getting educated because YOU need to be educated about good thyroid treatment in order to get and keep a good thyroid doctor (they don't like patients coming in and saying 'make me lose weight but I don't know how the thyroid works with my other hormones').

I know a few docs who only give Cytomel cuz they just can't bring themselves to lose the almighty buck (you can't get a patent on a pig part and natural thyroid is made from pig thyroid and no one makes any money on it, we just get well on it) and they don't 'get it' that the human body needs T4, T1 and T2 as well as T3, and we need ALL our hormones balanced (progesterone, estradiol, testosterone, etc.).

Ok, you others reading....let's help this person find a good, natural thyroid rx'ing doctor in her area.....

ETA: And start here for more education: www.stopthethyroidmadness.com

Pam

[KellyWPA]

Thanks Pam,

No one has checked my T3 for awhile and I know that needs to be checked. The past couple years, I have had a bunch of other health problems that took over my life (a fight to save my leg) and kind of let some stuff slide. No one has checked progesterone either. This new PCP did check my vitamin D levels and although they said they are normal, my result was only 32 and I know that is low.

I have some mobility issues but even with that, up until Jan I was doing 60 minutes a day on my treadmill. Now I am lucky to do 20 a couple days a week. My energy levels have plummeted.

As far as diet, besides being diabetic, I have digestion issues to have to eat easy to digest foods and now gluten free. I don’t have a wide variety of foods to choose from. I do have Glucerna every day which is the diabetic’s version of Ensure to try and get some needed nutrients.

[nonstickpam107]

We don't let my diabetic MIL have Glucerna products...they just set her back....she just does Dr. Bernsteins diet (lowcarb) and I'm Celiac myself (with HIE (hyper IgE), PAN (vasculitis), Sjogrens, Hashi's, crushed hands (I wear special gloves to lift) and left leg prosthetic, so I know the trials and tribulations of being disabled and fighting my way back. I've never felt so WELL as I do NOW though....and I did NOT HAVE Type 1.5 diabetes...I am insulin resistant...so I keep the carbs under 60 a day and about 80 a day on work out/lifting days. I feel really good now.

Pam

[KellyWPA]

I have gastroparesis which is nerve damage to the stomach, so Glucerna is one of the easier foods for me to eat. I can’t take just one shot with a meal and normally do at least 3. I do have my BS in good control & my A1cs are in the mid-5s. Unfortunately with Bernstein, a lot of his recommended foods are not foods I am able to eat - although he does have some pretty good suggestions. I eat about 90 grams of carbs a day. That is more than what I really want to but the gastroparesis makes that pretty challenging!

I did read in going thru some of the posts here about some of the problems that you also have. I am glad that you are feeling better. That is the one great thing about these message boards is being able to connect with people in the same boat and find out how they worked things out!

[watcher513]

Welcome Kelly. Hoping someone here can help with a doc.

[KellyWPA]

Thank you!

[3tikes]

Kelly,
Where are you in PA? I know of two doctors who treat thryoid as described above and also do BHRT.
Rhonda

[nonstickpam107]

Yay Rhonda! Thanks for posting!! (When I was in PA, it was in Sharon PA, btw).

There is another poster here with gastroparesis, and yes, there aren't a lot of foods you can digest, that's for sure. I hate having Celiac, but gastroparesis would be worse IMHO. Are you aware that most with gastroparesis have it heal if a doctor can medicate your thyroid to top end of range with Free T3? Yep, the lower the Free T3 is (and you should be having FREE T4, and FREE T3, not Totals taken), the more gastric upset you are going to have.

I've seen several gastro/thyroid patients actually heal once they got natural porcine thyroid in the right amounts, a doctor who got the TSH under control (under a 1, for God's sake!) and FT3 at least 2/3 of the range, and many are on Cortef for adrenals (they tend to have low adrenals too). Here's a prayer and fervently hoping the doctor Rhonda is going to suggest will be Doctor Right for YOU too.

Pam

[KellyWPA]

Rhonda, I live about halfway between Johnstown & Altoona, but travel to Pittsburgh regularly to see other doctors. I am actually heading to Pittsburgh Monday to pick up orthotics. Between Dec & Feb, I have appointments scheduled in Cranberry Twp, Coraopolis & Monroeville. I have been downtown Pittsburgh to both West Penn & Allegheny General. I don’t mind traveling to see a good doctor! I would really appreciate any names you can give me.

[KellyWPA]

Thanks Pam - I have to email the person that gave me the link to this board and tell her that she literally saved my life! I was starting to wonder if there could be a connection between the gastroparesis and thyroid. I have seen stomach issues on the list of thyroid problems and I know my stomach is bothering me more than it had been.

I really appreciate all your help!

[nonstickpam107]

I do believe wendysmiling is one of the posters who are being treated for both gastroparesis and thyroid, and when she is well replaced with T4/T3 she does better.

Pam

[KellyWPA]

Thanks Pam, I will watch for her posts!

[nonstickpam107]

You can go up and search for her posts, actually.

Pam

[KellyWPA]

Thanks Pam - I just did a quick search and read thru a couple. I will read some more. Never thought to make the connection between thyroid & gastroparesis before! I really appreciate all your help!

[3tikes]

Kelly,
I sent you a message please let me know if you don't get it.
Rhonda

[KellyWPA]

Hi Rhonda,

I didn’t get the message. I just logged into my email to make sure that it didn’t go to spam either.

Thanks!
Kelly

[nonstickpam107]

Kelly doesn't appear to have enough posts/time in order to receive a PM. You might want to just post the docs' name and whereabouts/phone no. here.

Pam

[2big4mysize]

is your doc basing the sleep apnea on your regular blood test CO2 levles? cause that is a measure of acidity not the gas CO2 concnetration.

[3tikes]

Thanks Pam, I posted somehow when I clicked on her name? Who knows - these computers - UGH.
Kelly,
I've been seeing Dr. David Goldstein at North Hills Natural Medicine. He was on the top docs site. I have to say I've been really pleased. I arm myself with printouts of answers I've gotten here. He is very receptive to how you feel and not just numbers. There are things I'm not sure of - he promotes Iodine, and DHEA and I know on here that doesn't go over so well. I did take them both, as DHEA was out of range.

He does do BHRT. I use progesterone/testosterone compounded cream. Both my numbers were in the tank. He uses Womens International-which I think I read recently that's not one of the favorites - Pam can you interject here?

Anyway, he has helped me tremendously - I had very low ferritin (8) and he offers (never feels like you have to) IV iron and I did do it and my ferritin went up to 96 - only to fall back down due to heavy cycles. I'm having a uterine ablation by gynecologist to slow down bleeding. There are times we disagree, but he is always willing to try my way first - I was on Armour until the reformulation threw me off track.

His website is nhnaturalmedicine.com.

[3tikes]

I am 25 miles north of Pittsburgh. It takes me about 40 minutes. I'm not sure how far we are from Johnstown - maybe an hour. Anyway, I'd be happy to do anything I can to help - you can stop and rest here if need be. I am not scheduled to see him for awhile, but when my bloodwork showed hyper last time he brought me right in. Just arm yourself with the knowledge here (that's where this board and especially Pam come in, thank God for all of them), he likes that!

[nonstickpam107]

Originally Posted by 3tikes

Thanks Pam, I posted somehow when I clicked on her name? Who knows - these computers - UGH.
Kelly,
I've been seeing Dr. David Goldstein at North Hills Natural Medicine. He was on the top docs site. I have to say I've been really pleased. I arm myself with printouts of answers I've gotten here. He is very receptive to how you feel and not just numbers. There are things I'm not sure of - he promotes Iodine, and DHEA and I know on here that doesn't go over so well. I did take them both, as DHEA was out of range.

He does do BHRT. I use progesterone/testosterone compounded cream. Both my numbers were in the tank. He uses Womens International-which I think I read recently that's not one of the favorites - Pam can you interject here?

Anyway, he has helped me tremendously - I had very low ferritin (8) and he offers (never feels like you have to) IV iron and I did do it and my ferritin went up to 96 - only to fall back down due to heavy cycles. I'm having a uterine ablation by gynecologist to slow down bleeding. There are times we disagree, but he is always willing to try my way first - I was on Armour until the reformulation threw me off track.

His website is nhnaturalmedicine.com.

Um, the iodine doesn't go over big when you've had people end in the ICU taking it when the doc didn't check for Hashimoto's first. ...otherwise, to each his/her own. (I have my own personal story about having been given iodine...and almost died because the doc didn't understand that using it when both TSI and TPO AB is present).

Women's International doesn't do the type of compounding I need..otherwise, there are some who use that. I was already post meno at age 39 when I presented (and that's just ANOTHER reason WHY I shouldn't have been given Wild Yam and iodine...but that's another story...) and the doc I had at time was writing Rx's for BhRT that was abbsolutely overdosing me and binding up all my incoming thyroid hormone. I found a compounding pharmacist who 'got it' near me and he worked with me ONE on ONE (as everyone should be able to do with their compounder face to face...you wouldn't mail order to a doc who'd never seen ya...and you shouldn't to a compounder either IMHO).

Goldstein is not highly recommended by a lot of the women I deal with...I must be honest about that....but then again, many of the women I deal with face to face ARE doctors and health professionals themselves as well as women who've already been through two, three different hormone doctors and have 'um...evolved'.

ETA: the 'Top Docs' site is NOT a doctor's recommendation site, it is a site for patients to write in and recommend doctors. I steer clear of recommendations on there that say 'OOH, AHH, he listened to me" and no mention of OPTIMIZING treatment (such as: gave me almost a grain of Armour and when he/she saw my TSH fall, he back the dose down), and 'My TSH fell a whole point". I usually go by "This doctor does Free T4 and Free T3 and allows my FT3 to be at least 2/3 of range, and doesn't insist I take ANY supplement, doesn't SELL supplements". JMHO

Pam

[nonstickpam107]

3tikes..then 'hyper' he was talking about was...um..what? An over the top Free T3? or was he looking at your TSH? (Not being nosy, but another woman wrote to me, said he gave her Armour, and when she went in all he did was a TSH and a T4 and then pronounced her 'hyper' by looking at her TSH. ???..this was a new patient..and I'm not sure she understood that 'hyper' actually is having the runs, and having quad muscles so shaky you can't walk up stairs and hands held out in front of you shaking..and FT3 over the top...not a measure of your TSH.) She seems to think he only did a TSH and proclaimed her "hyper". ??

Pam

[3tikes]

It was my T3 that was over the top, I did have slight symptoms of diarrhea and feeling like I had way too much caffeine so I wasn't surprised at the T3. I admit I did have to tell him I wanted the whole kit and kaboodle - the FreeT3 and T4, reverseT3, etc. - and he didn't argue. I told him that I want FT4 at least in the middle and my FT3 at the high end but more importantly I want to feel good and then see what the numbers say and he is on board. I thought he agreed with me that TSH doesn't mean much, that how a patient feels is a better gauge. Many times he has said, okay if you want to try that we can but then we need to see where you are.

If I had other choices around here - I'd check them out. There is one a moderator uses over on the thyroid yahoo boards I am considering as well if I cannot get optimized here. The other doctor is Dr. Henry Lindner - ever hear about him Pam? It's about three hours, but we talked about staying overnight (without kiddos!) so it would be okay.

I understand about the recommendation site - there were patients who did recommend him so I gave him a try. Do I think there is room for improvement there - yes! I was feeling so darn good in May that I was on cloud nine! I was so very happy and thought it was all behind me, but whether it was the Armour reformulation or my ferritin coming back down I don't know but I'm not back to being optimized yet.

[KellyWPA]

Thanks Rhonda. I looked on my insurance site first and he wasn’t listed then I looked at his website. Apparently, he doesn’t take any insurance. I will call & see how much an office visit would be but that is going to be hard for me if I can’t get reimbursed by my insurance for part of it. I have already learned a lot the little bit of time that I have been here!

[KellyWPA]

Originally Posted by 2big4mysize

is your doc basing the sleep apnea on your regular blood test CO2 levles? cause that is a measure of acidity not the gas CO2 concnetration.

I believe that it was just the regular blood test CO2 levels. She originally said that because of that level and my rapid heartbeat that she suspected sleep apnea. I did have the first part of the sleep study done and that came back that I probably had obstructive sleep apnea. I decided not to go thru with the 2nd part because hypothyroidism is one of the causes of sleep apnea and I want to get my thyroid fixed.

[nonstickpam107]

3tikes..well, goodness, it took me trial, error, a GREAT doctor and three YEARS to get 'optimized' so I don't think you should feel badly it's not happened 'yet' for you, lol.

You certainly deserve to feel great...it's really a bad thing when we go 'over the top' with T3 on the first 'go round'...cuz it means we have to go back to square one (I know...I did that...not once but TWICE...I thought the second time that I COULDN'T be hyper, and even argued with Doc K with him saying 'I am always right' while smiling at me, ha ha..he WAS right!).

So...what are you doing now...and what dosage?

Um, Henry Lindner> Yeah...um..he's the one that thinks that high thyroid levels cause high cholesterol. Yep, sure doH. Lindner's online site used to sound GREAT. Imagine it still does. (Ya don't see any patients recommending HIM...do ya?)

Pam

[nonstickpam107]

Has anyone mentioned this doc to you: (and if so, is this far from you?)

Dr. William Richwine, D. O. Natural/Complimentary Medicine 2135 Market St. Camp Hill, PA 17011 717-761-0601 www.naturalhealthdoctor.com

Pam

[3tikes]

Dr. Lindner was a moderators doctor over on the yahoo site. I haven't heard of Dr. Richwine, he is 3 and 1/2 hours away - not too bad. I get my full panel done again at the end of this month to see where I am.

[nonstickpam107]

Well, be sure to ask about cost and 'supplements store' as to Dr. L. I've known four who went to him. They don't see him now. But Doc's change, and patients change, etc.

I don't know anyone who's seen Richwine...so I had to ask...I've seen him listed by patients several times on several lists as being good, likes to give natural thyroid, etc.

Pam