And here we go again! Mental prep for visit with my endo

[DebE13]

I had my ultra sound last week for my cancer check and find out the results tomorrow. Needless to say, I've been obsessing about it all week. The simple and fairly quick ultrasound irritate my neck area and brought back quirkey discomforts similar to what I felt at the time of my cancer dx. Telling myself it's in my head and what I'm feeling is scar tissue and sensitivity that would accompany the removal of part of the body.

I request a vit D lab with the following results:
Total-VitD 73 ng/mL
25-OH-VitD3 68n/mL
25-OH-VitD2 5 ng/mL

I also asked for a ferritin check:
13 ng/mL with the high/low =8 ng/mL to 252 ng/mL

What do I do about this?

Of course my labs came back almost identical to those taken last November in which he was happy at the normal ranges and flat out said no to my request to add an afternoon dose of Cytomel in the adfternoon since my butt is dragging around 1 pm every day. I continue to wake up tired, am tired all day, take naps and fall asleep on the couch around 8 and in bed at 9. I have permanent black lines under my eyes and look like I've gone through the wringer. My hair loss makes me want to cry. It's bad, really bad. I had fine, thin hair to behin with but this is beyond writing off as a cosmetic complaint. I'm bringing in the hair bands that I used to wear with my french braid and the ones I wear now which are just a bit bigger than the ones used for kids with braces. TINY! I also have the now huge clip that's 3 1/2 inches I used to use and the now 1 cm clip I took off my orchid used to clamp the flowers to a stick. Hopefully this will make an impression but I have no hopes that anything will result.

Free T3 2.2 pg/mL High/low 2.1 pg/mL 4.1 pg/mL
Free T4 1.3 ng/dL 0.7 ng/dL 1.4 ng/dL
TSH 0.89 uIU/mL 0.35 uIU/mL 4.50 uIU/mL

I did stop taking my T4 meds at night before bed since I was having sleep issues. I can't tell if I'm back on track because of that or because my job issues have resolved and I am now happy as a lark at my new job.

More recently, I have had numerous times where I have eaten and very soon afterwards was so sleepy I had to lay down and sleep. That's more of a food intolerance issue, right?

Do you think it would be worthwhile to ask to try a different brand? Like Tirosint? It's been a while since I've researched them but I think that's a MC safe brand. I'd prefer trying more Cytomel (it's not the name brand, it's manufactured by Paddock and is safe). I'd actually rather try NDT but it isn't an option. Or do I just wait until July when I have my appointment with a different endo and keep everything as is?

My MC has remained the same despite my major stressor being left behind (toxic work envirnonment at previous employer). I've been at my new job for about 2 1/2 months now and have gained peace of mind. It has been disappointing that Norman didn't reward me for one of the most difficult decisions I have had to make. I still have mostly WD then out of nowhere Norman will say howdy and disappear for long periods of time. I'm still taking Entocort about once every five days.

Any suggestions would be apprciated.

I got my 23andme results back but have to get them interpreted. Seems a bit hard to navigate but I'm using my ipad and I think I need to get on my laptop to download the files. Maybe this weekend........lots of interesting stuff there.

[tex]

Hi Deb,

I hope the ultrasound results turn out to be fine. Your vitamin D level is certainly fine.

Maybe Brandy, or someone else who has some experience with iron deficiency can offer some pointers on the ferritin results. I'm not much of an authority on that item.

More recently, I have had numerous times where I have eaten and very soon afterwards was so sleepy I had to lay down and sleep. That's more of a food intolerance issue, right?

It's normal to be sleepy after a big meal, and if you are fatigued by early afternoon, it's not surprising that you would be sleepy after eating. I don't recall eating making me sleepy back when I was reacting, unless I was already fatigued (which was often/usually the case). I would think that sensitivities to a food in a meal would cause digestive distress, and that would tend to make sleeping more difficult, but YMMV. Of course it's possible to develop a tolerance for a food, also, in some cases. We still produce antibodies to it, but we cease to have clinical symptoms. Of course, you're obviously still having clinical symptoms.

Do you think it would be worthwhile to ask to try a different brand? Like Tirosint? It's been a while since I've researched them but I think that's a MC safe brand. I'd prefer trying more Cytomel (it's not the name brand, it's manufactured by Paddock and is safe). I'd actually rather try NDT but it isn't an option. Or do I just wait until July when I have my appointment with a different endo and keep everything as is?

If you had a rational and/or logically-thinking endo, you would probably have a case, because your Free T3 is too low (though still in range), and your Free T4 is too high (but in range). IOW your FT3 is too low relative to your FT4. But frankly I would be surprised if he even notices that (pleasantly surprised, to say the least).

My MC has remained the same despite my major stressor being left behind (toxic work envirnonment at previous employer). I've been at my new job for about 2 1/2 months now and have gained peace of mind. It has been disappointing that Norman didn't reward me for one of the most difficult decisions I have had to make. I still have mostly WD then out of nowhere Norman will say howdy and disappear for long periods of time. I'm still taking Entocort about once every five days.

Any suggestions would be apprciated.

Maybe it will take a few more months for the benefits of the reduced stress to translate to healing in the gut.

And you are definitely correct that there is a heck of a lot of information in the 23andme results. For example, I notice that if I drink a couple (or even 3) cups of coffee in the morning, and stop at that, I'm fine. But if I drink another cup in the afternoon, or a glass of tea, it keeps me from sleeping at night. Before I started drinking coffee, I could drink a glass or 2 (or 3) of tea in the afternoon without any problems.

When I look at my Prometheus analysis of my 23andme raw data, I see that I have a mutation that slows down the metabolization of caffeine, meaning that it takes longer to get it out of my body. So apparently I'm probably still processing the morning coffee all afternoon (and maybe longer), and when I add some more caffeine in the afternoon, that can't be processed until the morning's coffee is finished, which means I'm probably still metabolizing the extra caffeine most or all of the night.

I'm amazed that your endo can look at your continued hair loss and refuse to properly treat you for hypothyroid symptoms.

Tex

[DebE13]

Thanks Tex,

It's nice to get a confirmation that I'm not totally off base. Hopefully, my tiredness won't be written off as due to something else. Although, it's not ever been taken seriously (yet). I have a bottle of iron supplements (65mg equivalent to 325 mg of ferrous sulfate) that I dug out of the cupboard. Not sure why I stopped taking them but maybe it's time to add them back in. I think I was eliminating all extra supplements to be sure they weren't contributing to the GI issues. It's nice to see the vit d numbers are good. I've had a good winter warding off colds and flu (knock on wood).

The job switch was quite stressful and looking back, it was the best choice I could have made. After 16 years in a nasty environment I have realized that is not the norm. My bosses are terrific! Very supportive and great to work with. The people there are positive and I no longer dread going to work. It has allowed me let go of the negativity that I carried home daily.

I am only speculating how the appointment today will pan out so maybe I will be wrong and he will be attentive to the fact that I still continue to complain about the same issues since my TT in 2013.
Wishful thinking........

[brandy]

Hi Deb,

Brandy here. My response may be to late for your endo appmt but maybe something to talk to you PCP about.

My comments will be strictly about low ferritin and my experiences. (not thyroid.)

Deb says:

my butt is dragging around 1 pm every day

I continue to wake up tired, am tired all day, take naps and fall asleep on the couch around 8 and in bed at 9.

My hair loss makes me want to cry.

I have had numerous times where I have eaten and very soon afterwards was so sleepy I had to lay down and sleep

.

Deb all of the above can be tied to low ferritin. I was reading I think on WEBMD last night that ferritin lower than in the 40's can cause ongoing hair loss and really needs to be in the 70's to stem hair loss. My experience with low ferritin was it wasn't until I got my scores into the 40's that I started feeling better.

I believe your ferritin scores are about the same as last time and your PCP was concerned. Are transfusions an option to bring ferritin scores up? I'm not sure what the number/score threshold to qualify for transfusions. I believe we've had a couple of MCers that got transfusions due to low iron. In a way it seems like it would get your numbers up faster and easier for an MCer with absorption issues. You will feel amazingly better with scores at least in the 40's.

If transfusions are not an option---for whatever reason I'd talk to docs/pcp about prescription or non prescription heme iron supplement that is soy free. Heme (animal based) supplement is going to be more effective and faster than a metal supplement. I took proferrin. This was OTC but drug store had to order it in for me. http://www.proferrin.com/proferrines-home/ The problem with the Proferrin was that I could barely tolerate it. Plus it is kind of pricey. I could only manage one tablet with my noon meal per day and I still had gurgling. If you could get something heme based prescription with less ingredients and dyes than the Proferrin that would be a good way to go and probably cheaper. There is a spec sheet on the website that gives the proferrin ingredients. I'd see if your pharmacist and or PCP can find you something that is heme based, soy free but less ingredients than the Proferrin. Pull ingredient list from Proferrin website. I know at least one other MCer has mentioned using Proferrin. Perhaps they will chime in.

My experience was it took about 5 months of diet changes....(a lot of shrimp, scallops and oysters, raisins etc) and one Proferrin a day (all I could manage....bottle says take 3 or more per day) to get my ferritin scores to the 40's. I was a non menstruating female at the time. The change in how I felt was dramatic.

Let me know if you have any questions.

Brandy

[DebE13]

Thank you for the suggestions. I didn't realize it was that low. The sleeping has taken its toll on my relationships and it isn't something I want to be doing. This will definitely be a topic to consider. Thanks for the link and suggestions on types. My PCP has been very receptive to my suggestions. Most likely I will need to make an appointment with her.

[tex]

Deb,

It's a good thing that Brandy is on the ball, because I was only thinking about fatigue due to thyroid issues. The association with low iron snuck (sneaked, for those who prefer more formal English) right under my radar.

Yes, few deficiencies/insufficiencies can kill energy levels faster than low iron. The Institutes of Health (or whoever is in charge) needs to update their "normal" ranges, because most doctors seem to interpret test results within so-called "normal" ranges as sufficient for anyone and everyone.

But that's not necessarily true. Just because a portion of the general population is normally low on certain minerals or vitamins and still able to function normally, does not mean that everyone can function normally at those levels (especially those of us who have an IBD or other AI diseases). For us, minimal normal levels may be way too low.

Tex

[brandy]

Yes Deb to clarify my PCP didn't talk transfusions. When he saw what he called my seriously low ferritin scores he didn't think I needed to supplement but told me to cook with cast iron. I supplemented on my own as I had suffered far too long, as well as got a cast iron skillet etc.

To recap my boyfriend diagnosed me with low iron in January of 2012. I had bloodwork done ordered by PCP in January 2012. I had a GI appmt in January 2012 and they are on the same computer system as my PCP. I had the GI and the training GI both interpret my lab results and specifically asked about iron. My scores were right around what yours were above (although I did not look at the numbers then). Both GI and training GI pronounced my iron as "normal" and nothing to worry about. I even questioned their comment as I felt so lousy. Yup, I was "normal."

Around Nov 1 2012 I was at PCP for something else. I asked PCP to look at my B12 test results from January 2012 on his computer system. That is when he scanned my labs from January and said "Your ferritin is seriously low." Sheesh. I had needlessly suffered for 10 months. I really value a good PCP now....even an average PCP. I really suffered that year. Anyways I started with the proferrin first week of November. By January 2013 about 10 weeks in I could tell the iron supplements were helping. In March 2013 I was feeling pretty good and tested in the 40's for ferritin. I continued supplementing for about 4 more weeks then stopped as like I said before I could barely tolerate the proferrin but I was feeling much improved. I've not supplemented since then and have simply obtained iron from food since then.

I think it is hard for MCers or anyone with an inflammatory bowel disease to eat our way out of a low iron situation.

Yes, hopefully this clarifies and it sounds like you have a good PCP. Having lived through the low iron situation I would at least ask about the transfusion option and when it is used.

Let me know if you have any questions.

Brandy

[DebE13]

Thanks Tex and Brandy, such valuable information.

My visit went as it played out in my head and ended on an even more disheartening note. I did the whole explanation and hair bands/clips visual- nothing. It is not related to thyroid. Suggested I should try biotin. I think I will go Brandy's route since those numbers seem very clear there's a problem. Talked about the fatigue and spending most of my spare time napping- nothing. It is not thyroid related and no further suggestions. My numbers are normal so there will be no change. I would have been happy to leave with that and wait for my second opinion in July but I wasn't done.

My ultrasound revealed what is hoped to be a calcified lymph node but I need another fine needle aspiration to confirm it is not cancer. Now I was told my chance of recurrance was as clse to nil as they could predict since my microcarcinomas were totally encapsulated and there was no lymph node involvement. I was a little pissed off thinking about it although the rational side of me knows it's not their fault. He started talking about if it was cancer there would either be radioactive iodine treatment or surgery to remove it but that was getting ahead of the situation. I already have a strong voice in my head saying I am NOT doing RAI. Hopefully I won't have to deal with the reality at a later date. He thought maybe it was a surgical clip that was not noted in the report but he confirmed with my surgeon that no clips were used. It's something that needs to be checked out and the idea of going through another neck surgery has me bummed. Starting a new job and having one in which I routinely lift 60 pound boxes means time off work will be longer than my previous desk job ten days. I'm being all doom and gloom now because the idea of it is so new but the tightness I'm feeling is too familar. to make it worse his earliest opening is May 4th. Now that totally infuriated me. I was thinking next week to get some answers. Sigh, grr, and a whole lot of inappropriate explicatives that my mother would be ashamed of if I used them. Trying to have a sense of humor but only half succeeding.

[brandy]

Hi Deb,

Keep us posted on your situation.

I found this interesting. http://www.stopthethyroidmadness.com/ferritin/

Brandy

[brandy]

Hi Deb,

Keep us posted on your situation.

I found this interesting. http://www.stopthethyroidmadness.com/ferritin/ It looks like iron supplement should be taken at different time as thyroid medicine.

Brandy

[DebE13]

Excellent article! I've cooked with a cast iron kettle for years- would be without it. I will have to check with my PCP about this. The reminder about the thyroid meds was helpful.

I found it interesting about the numbness in the hands. This has been a particular bothersome problem for me at night. Every night I wake up with dead hands that tingle. I thought maybe it was due to my new jobs and body getting back in shape but maybe not. I was sore for about six weeks and my muscles have finally found their way back. I have many more of the probleems on the list but wasn't sure if they were due to MC, thyroid, or something else. It will be interesting to see if they continue.

[Chemgirl]

I had similar symptoms when my ferritin way low. The hair loss was particularly upsetting.

What I did learn was that just because someone is in the "normal" range doesn't mean they are fine. Low normal is still low enough to have symptoms.

I did try all of the usual tricks like avoiding coffee/tea during meals, cooking is cast iron, eating rare steak, taking vitamin C, but nothing made a difference.

A pharmacist friend helped me with supplements that she usually recommends to people with colitis. I personally can't take any of the standard iron supplements, too much GI distress. For me, I found the best option while still healing was Proferrin. While the actual dose of iron is very low, it is a form of heme iron and very easy to absorb. I had to take 2-3 per day, but no GI issues and my ferritin did go up. The other option is Faramax. Faramax is a higher dose of iron, but I don't think I absorbed it quite as well while symptomatic. The pill is designed to dissolve in your intestine, rather than stomach. I think D made it go right through me. Now that D is under control I have switched to Faramax with good results.

Goodluck!

[miriam]

Hi, my iron was quite low last year and my GI recommended a series of iron transfusions, which helped tremendously. Each one took about 15 minutes, with 30 minutes of observation afterwards. All of the iron supplements that I tried caused too much GI distress.

[DebE13]

Is the proferrin the same as what you get when you type it in on Amazon- about $30/btl for 30 count? Is it something that could be ordered through a prescription especially if it's taken three times a day. I would save a lot of money and think my PCP would be agreeable to try it.

I just finished reading an article that iron can promote the growth of cancers. With my pending FNA and not knowing if the suspect lymph node is cancerous I'm wondering if it's a good idea. Yet to do nothing seems like a bad choice too.

I messaged my doctor this morning and received a return call telling me they moved up my appointment to next week. I'm relieved I don't have to wait a month and a half.

[Chemgirl]

Yes Proferrin costs a fortune. I found it at my local Costco for slightly less, but still expensive. I'm in Canada and it is not available by prescription here. I hope you have more luck getting it covered. The cost is the main reason why I switched to Feramax 150 once I was able to absorb it.

If you can tolerate the cheaper forms of iron, and you actually see improvement in your numbers, then switching to Proferrin might not make sense for you. For me, ferrous sulphate caused pain and I wasn't absorbing it. Proferrin had no side effects and my bloodwork improved so it was worth the cost to me.

IMO waiting to see your doctor before starting iron won't make a huge difference. It takes some time to see improvement from iron anyway.