Skin problems and thyroid meds

[smartygirl]

Sorry this is so long, but I am desperate and looking for help.  I went to the doctor in December only because I had a feeling in my throat/chest that I kept trying to clear but could not. My hands and feet were always cold and I had night sweats, headaches and cravings but I attributed all this to cold winters and maybe premenopause or eating too much sugar. My TSH has been around 5 for around 15 years, so I thought I should just check it since I hadn’t had blood work done in a while.  I tried 65 m of levothyroxine many years ago and stopped taking it because of anxiety attacks and heart palpitations.  I am now on Tirosint for hashimoto’s disease. The doctor that diagnosed me put me on Armour initially and a bunch of some supplements to increase immune function because he thought I had lyme disease (turns out I don’t but was loaded up with megadoses of supplements for it).  (I am putting the list below).

I broke out all over my body over one month into the regimen. The rash was pretty scary. It started on my arms then torso, then into my legs. Since that time I have been living a nightmare.  For a long time my legs (the right one mostly) felt like they were on fire from the inside, but not to the touch, my skin is prickly/itching, stabbing/biting all over, it feels like I am wearing fiber glass on my entire body or that my skin is made of fiberglass.  The rash is not very visible any more but my skin stings/burns/bites/flares from deep within off and on throughout the day with some days being better/worse than others. My face is broken out and has stayed that way.  I am now experiencing grief and depression from it.

My allergist tried a bunch of antihistamines (which I hate taking but was too scared not to).  My doctor (integrated medicine) switched me to WP to try. I researched the supplements I was taking, saw that 5-MTHF, methyl B12, and selenium could all cause rashes and that Vitamin D is made from wool. Two pharmacists warned about staying on the natural saying allergies are rare but they have been known to happen.  Other pharmacists said try taking it. My doctor said try staying on it, but he would prescribe levo if I wanted, otherwise I would never know and maybe my body is just adjusting to it.  Adjusting???!  Really?  There’s no way adjusting can feel like this.  Can it?  Are other people having this burning, stinging, biting body reaction?

On the WP (50 mcg) I had symptoms I never had. Dryer skin, hair softer and thinner and seems like more than usual coming out in the shower.  A bit used to come out before diagnosis but I wasn’t concerned about it.  When I started armour and supplements, I could wash my hair with hardly any hair coming out, so I thought things were improving.  

I asked my dr. if I should increase the WP and they did not get back to me. I had the prescription for levo from the NP so I fill that and increased the dose to 75. It seemed like that helped for a bit. The next time I saw my dr. he increased that to 100. Again, it seemed like that helped for a bit (unless it didn’t and I was just more hopeful). I also started to notice that the feeling in my throat got more intense.

I finally got in to an endocrinologist and a new PCP in June.  The PCP didn’t want to put anything else in my body which I was grateful for since there was no way to know what caused the reaction.  Both doctors suspect the supplements.  However, I’ve been 3 months off supplements and 9 weeks off the fillers in generic levo and while symptoms aren’t as bad as they were, my skin still stings and bites  deep inside my skin and  looks all dried out on the surface; alligator looking on my legs and crepey looking on my arms.  When I get a chill and get goosebumps, it feels like the goosebumps are hard or nettle-like.  The endo didn’t think it would be related to the meds at all, but I see lots of people on here and in other forums who have skin problems with levo.   But I guess I can’t totally blame the levo because the severe breakout happened while taking Armour. I’m very very upset by the whole thing and fear I will lose my ability to cope.  I left the doctor who I feel  caused this mess and tried to tell me it was Coxsackie virus.  I was very hopeful that once all the mega doses of supplements that dr. put me on were out of my system, I would be feeling better.  When I search on here and other forums and see others having skin problems after medication, I get very scared.  Mary and anyone, can you offer any help?

Here are the medication changes and supplements by date started and ended:  Labs follow.

Meds/Supplements
1/30/14    
Armour 30 mg
Vit D3 10,000 IU every other day
Turkey Tail 2 g
5 MTHF – 5 mg
Methyl B12 5,000 mcg (also has 1 mg 5MTHF)

1/27
Selenium citrate 200 mg
OrthoBiotic Probiotic 40 billion cpu
Tri-Fortify orange liposomal glutathione 900 mg w/ vitamin C 100 mg

3/4   Added: (for rash)
Zantac 150 mg 2x/day
Zyrtec 10 mg night
Stopped Armour

3/5   - Added: Claritin 10 mg day
3/7 - Started WP natural thyroid hormone 32.5 mg
3/8 - Switch from Claritin to Quercitin for day use
3/10 - Started probiotics again, ran out for a week or two
3/11 - Stopped all supplements except probiotics
3/12 - Stopped Zyrtec
3/13 - Aleve for headache
3/14 - Didn’t take WP
3/15 - 50 mg Levothyroxine
3/16 – Levo
3/17 – Went back to WP
3/19 – 75 levo
3/21 – stopped probiotics
4/8 – 100 levo
4/25 – Stopped Vitamin D
6/9 – Switched to 70 mcg Tirosint








Labs

7/2014
TSH .8
Free T4 1.0 (from memory at the moment, it may be a little different and I will update)
Free T3 3.0 “                “

4/2/14
T3 99
Free T3 2.6
Free T4 1.26
TSH 2.430
Reverse T3 18.9
TPO Ab 111

2/20/14
T3 82.36
Free T4 .67
TSH 3.14
TPO Ab 105
Anti-TG Ab <1.0

1/16/14
T3 80.47
TSH 8.35
TPO Ab 93
Anti-TG <1.0

12/4/13
TSH 6.19

12/24/08
TSH 3.95

11/27/07
TSH 4.91

7/16/07
TSH 5.38
Free T4 .73

1/31/05
TSH 5.53
Free T4 .67

12/04
75 mcg levoxyl

5/13/04
TSH 2.62
Stopped levoxyl

4/8/04
TSH 5.42
Free T4 .82

2/18/04
TSH 6.37
Free T4 .67

6/12/02
TSH 5.04

11/30/01
TSH 6.87
Free T4 .93

[smartygirl]

Hi Barb or anyone,

P.S.  I'm still learning what these numbers mean. I asked my doctor to do these labs using the list from STTM. She mentioned an endo that she knows who is willing to do dessicated thyroid or cytomel. I am wondering if my T3 numbers indicate that this might be a good idea or should these improve with the increase in tirosint?

Can you recommend what I should be reading or where to go to learn about good numbers. My PCP is good but even she is stuck on "the normal" range. From looking around on here and other places it seems there is an optimal range. Is STTM a good book to get?  I also don't want to get too scared from reading too much. Looking for a balance.

Thanks,
Diane

[smartygirl]

I had my labs done on 8/20, the day before I increased my Tirosint from 75 mcg to 88 mcg. I wanted to post and welcome any input.

Reverse T3           19             (9.2 - 24.1)
Total T3               .71            (.80 - 2.00)
Free T3                1.92          (1.45 - 3.48)
Free T4                1.35          (.71 - 1.85)
TSH                     1.9           (.47 - 5.01)

Also, I am exposing my math weakness but when you noticed that my FT4 was only 27% of its range (from labs just before these), can you give me more information about how you came to that number?  Thanks.

[smartygirl]

Phew. Thank you for the comforting responses. I hope your patches of snake like skin are far in the past.

[Red_Star]

I had patches of snake like skin from hypothyroidism just to add.  Your endo doesn't know much about the symptoms of hypothyroidism.

[Red_Star]

There is some good info on STTM but the woman who created that website went through "nearly 20 years of T4-only hell" to quote from her website.  You won't be seeing positive reviews of synthetic T4 any time soon on that site lol.  I didn't do well on Armour and take synthetic T4.

[smartygirl]

Yes. Thanks. My PCP is great. I brought the list of recommended labs from  Stop the Thyroid Madness website and she had no problem ordering them.    I asked if we could do labs now so I would know the numbers right before the raise. My pharmacy doesn't stock Tirosint so I have to wait until tomorrow to raise. My doctor also is on board with the every other day raise you suggested.

Regarding STTM, I feel there's some good information on that site but scared with claims that T4 only is a problem. Or when people post synthetic T4 is poison. Yikes. I'm on synthetic. What to do with that info? I was on Armour when my problems began.  What are your thoughts on natural vs T4 only.  I would try WP again if I could feel better on it, but don't know if that would be muddying the waters right now.

[Barb135]

Not much info about her, but you never know.  

You should be able to get by with just your pcp until Dec, shouldn't you? Seems like a long time, but hopefully, it will go fast.

[smartygirl]

I am waiting for an appointment with a new endo but have to wait until December, ug. I'm on the waiting list though. According to health grades she looks good and a friend's doctor recently recommended her.

http://www.healthgrades.com/physician/dr-jessie-block-galarza-xc6x2

[smartygirl]

Thank you Barb for that ray of hope in my day. A big hug to you.

[Barb135]

Yes, TSH is a very sensitive test, but it's not a thyroid test at all; it's a pituitary hormone that's trying to prod the thyroid into producing thyroid hormones.  Once a person in on thyroid hormones, TSH is pretty much irrelevant, as it neither causes not alleviates symptoms, nor can it any longer prod the thyroid into producing hormones.  

I also disagree with him about the dry skin not being thyroid related... that's a prime symptom of hypothyroidism.  I also disagree with him about the high FT3 causing heart palpitations... it might, for a short time, but it's unlikely.  

If you wanted to go even slower than a jump from 75 mcg to 88 mcg, just to make sure, you could even alternate the 2 for a while 0 75 mcg one day, 88 mcg the next for an average of 81.5 mcg/day before going up to the full 88 mcg.  I've done this a number of times with various dosages and it works very well.  

Sounds like your pcp has a little sense, but you might need a different endo.  

[smartygirl]

I showed your suggestion to my PCP. She thinks it makes sense and added the 13 mcg for me. When I told my endo, he said not to raise. He said they TSH is the most sensitive test of thyroid function and he doesn't want it any lower. He also said T3 is already on the high side and he wouldn't want that to go any higher. He said increasing dosage won't do anything but give me heart palpitations. He says dried, scaly skin not thyroid related. I had some hope thinking about raising. Now I have a hopeless, dreadful feeling. I don't know where to turn.

[Barb135]

It would appear that something in the supplements, initially, caused the rash, as has already been suggested, but it's very possible that your anxiety over it is what's keeping it from going away, since anxiety keeps both cortisol and adrenaline levels higher than normal.

Your most recent labs show your FT4 at only 27% of its range, with FT3 at 60% of its range.  Rule of thumb is for FT4 to be about mid range, so, as you can see your level is falling quite a bit short.  Rule of thumb for FT3 is upper half to upper third of its range.  You're in the upper half, but you have a lot of wiggle room yet.   When you retest next time, you may need to increase your Tirosint from 75 mcg to 88 mcg to bring your FT4 up higher.

FYI - your antibody tests show that you have Hashimoto's - since you've been diagnosed, it's not necessary to test the antibodies anymore.  Once you have Hashimoto's, you always have it, so you can save some money by not testing those.

[flyingfool]

The single best source but unavailable in parts of the country at certain times of the year for Vitamin D is sunlight on your skin (without sunscreen).  However during the winter and when the sun's rays are at a lower angle leave little or no opportunity for simply going outside and converting Vitamin D.  So supplementation is required by many of us and certainly more so in the winter and norther lattitudes.

For example in Wisconsin we can only effectively make vitamin D from sunlight from about Mid-May until about Mid August.  The rest of the year the angle of the sun is too low most of the day or we are simply covered up with winter clothing to stay warm.

[smartygirl]

Thanks for the suggestion. I have researched ad nauseum as you can imagine. I ended up being mostly suspicious of Vitamin D3 after I found out it is made from wool.  I kept telling people my skin feels like it's made out of bad wool.  Vitamin D2 doesn't have a much better source (mold/fungus).  I didn't take as close of a look at Selenium but will revisit that. Thanks so much for your research.

[flyingfool]

the damage to your skin may take weeks or months to repair or heal.  It is not instantaneous because you stopped certain medications etc.

It does seem to appear to be a reaction to something.  But no one really knows what as you were taking so many things and changing many of them in rapid fire succession.  making ti difficult or impossible to find the culprit.

One possible thought that might want to investigate mroe is possible overdose of Selenium.  

Looking on yahoo and this is from one site that discussed symptoms of selenium toxicity. I still think it is doubtful but still worth investigating and could possibly be ruled out by testing your blood level of selenium.  This was one of the supplements you were taking which is why I thought it COULD be a slim possibility.


Respiratory Symptoms

Respiratory symptoms of selenium poisoning include mucous membrane irritation, coughing, garlicky breath odor, bronchitis, bronchial pneumonia, reduced respiratory rate, and ultimately, pulmonary edema and death.

Gastrointestinal Symptoms

Gastrointestinal symptoms of selenium poisoning include stomach upset, nausea, vomiting, diarrhea, a bitter metallic taste with burping and intestinal cramps, according to "The New Encyclopedia of Vitamins, Minerals, Supplements and Herbs."

Hair, Nail, Teeth and Skin Changes

Common early symptoms of selenium toxicity and poisoning involve the hair and nail beds of the hands and feet. Excessive selenium causes brittle hair, hair loss, deformed nails, brittle nails, sloughing off of nails, tooth discoloration, tooth decay and MOTTLED OR DISCOLORED SKIN.

Neurological Signs

Neurological signs of selenium poisoning infer damage to nerves and brain tissue. They include fatigue, irritability, listlessness, reduced mental alertness, emotional instability, hand tremors, TINGLING OR LOSS OF SENSATION IN THE ARMS OR LEGS  reduced blood pressure and ultimately, unconsciousness and death.

[smartygirl]

LABS

7/14/14
TSH .8 (.4-4.0)
Free T3 3.0 (1.5-4.0)
Free T4 1.1 (.8-1.9)

6/9/14 75 mcg Tirosint

4/28/14
TSH 1.0 (.4-4.0)
Free T3 3.4 (1.5-4.0)
Free T4 1.4 (.8-1.9)
Anti-Thy 20.0 (0.0-20.0)
Anti-Per 125.0 (0.0-10.0)

4/8/14 Raised levo to 100

4/2/14
T3 99 (71-180)
Free T3 2.6 (2.0-4.4)
Free T4 1.26 (.82-1.77)
TSH 2.430 (.450-4.50)
Reverse T3 18.9         (9.2-24.1)
TPO Ab 111 (0-34)

3/19/14 - 75 mcg levo

3/7/14 – 32.5 WP

2/20/14
T3 82.36 (55-144)
Free T4 .67 (.7-1.5)
TSH 3.14 (.4-4.0)
TPO Ab 105 (0-34)
Anti-TG Ab <1.0 (0.0-0.9)

1/30/14 30 mg Armour

1/16/14
T3 80.47 (55-144)
TSH 8.35 (.4-4.0)
TPO Ab 93 (0-34)
Anti-TG <1.0 (0.0-0.9)

12/16 - Herbal thyroid support with natural thyroid hormone


12/4/13
TSH 6.19 (.4-4.0)

12/24/08
TSH 3.95 (.35-5.50)
T3 74.9 (60-150)

11/27/07
TSH 4.91 (.35-5.50)

7/16/07
TSH 5.38 (.34-5.60)
Free T4 .73 (.5-1.64)

1/31/05
TSH 5.53 (.34-5.60)
Free T4 .67 (.5-1.64)

5/13/04
TSH 2.62 (.34-5.60)
Stopped levoxyl

4/8/04
TSH 5.42 (.34-5.60)
Free T4 .82 (.5-1.64)
75 mcg levoxyl

2/18/04
TSH 6.37 (.34-5.60)
Free T4 .67 (.5-1.64)

6/12/02
TSH 5.04 (.34-5.60)

11/30/01
TSH 6.87 (.34-5.60)
Free T4 .93 (.61-1.76)

[smartygirl]

Anxiety is an issue I have to deal with now as a result, but no doctors have suggested it was causative. The rash was severe and was clearly a reaction to something. I was fine (aside from some minor hypo symptoms) . . . started taking supplements and thyroid meds . . . then was not fine.  They were mostly all baffled that I had been put on so many supplements by the integrative medicine doctor.

The skin readjusting comment from the endo didn't make sense to me only because my skin was not bad before medication. I could see if it was all dried out and scaly to begin with, and that would take time to correct, but it  my skin was fine before medication.

I have an appointment with another endocrinologist for a second opinion but cannot get in to see her until December. I am on a waiting list.

I finished filling in the reference ranges on my labs and will post those in a separate reply from this.

Thanks,
Diane

[Barb135]

My apologies - you did post the results; we'll need the reference ranges in order to be of much more help.

Has anyone suggested that anxiety could have caused your rash?

I agree with the endo that it can take time for the skin to readjust.  When the body is on a thyroid medication, it heals the most important things first, such as heart rate, body temperature, etc.  Unfortunately, the skin if often/usually, one of the last things heal, because it's not as critical as other bodily functions.

I'd think a doctor who has been in practice for 30 years might be "old school" enough to treat by symptoms, but I see that he did mostly order TSH, only a few Free T4's and only one Free T3, so you might be right about him... maybe it's time for a different doctor.

[smartygirl]

P.S.  When I asked the endo why my skin is so dry he said it can take a good six months for the skin to readjust.  I don't think I am seeing a bad endo either. He is recommended by someone on Mary Shomon's page, he is Harvard trained and been in practice for at least 30 years.

[smartygirl]

I have been off the last of the supplements (Vit D3) for a little over 3 months and the rest for longer than that. Seven doctors who have seen the rash including the endo said it is not thyroid related. All have labeled it a severe reaction. It started on my forearms after a hot bath (I trying to get warm because I was so cold). This was when I was on Armour and some supplements. The rash then went to my torso, legs, and spread for several weeks onto my scalp and face. And when I say "rash" I mean a burning, stinging electrified hell. I even had a buzzing in one leg for a while then the intense heat from inside my leg. When I search for skin problems and thyroid meds I find many people with dry skin, burning, etc. from levo or tirosint. (That's how I found my way here.)

I'm on 75mcg of Tirosint now. The endo is happy with the numbers and is not having me back until January. He said he has never seen anyone with my reaction and believes it is a reaction to the supplements. I didn't have any of these skin problems before taking the medication and it was bad on the higher dose as well. I was also feeling anxious to the point of terror on the higher dose. That feeling improved on the lower one.

I have posted my labs. I plan to post the reference ranges. I had this list already typed up and on my computer at work for doctors. I have to dig out the paper copies to get the norms. I'm trying to do so much while I'm not feeling well at all. I am doing my best and will get that looked up as soon as possible.  Thanks for understanding.

[Barb135]

I only suggested that you get off everything long enough to get it all out of your system, then try Tirosint.  Since you're already on Tirosint, there would be no benefit to getting off the thyroid med, but I would get off all the supplements.  You can't stay off thyroid med indefinitely, if that's what you're asking... you have to have thyroid hormones to live and if your thyroid doesn't make them, you have to have the replacement hormones.

At this point, the symptoms you've listed are those of hypothyroidism and since you said when you were put on Tirosint, your dosage was lowered, (sorry I missed that - what dosage are you on?), I'd say your dosage is now, too low and it's time for an increase.  Tirosint is hypoallergenic, so there's nothing to react to.  It takes time for your body to adjust and that's often longer than the 4-6 period it takes the med to reach potential in your blood.  

As a couple others have already asked, please post your thyroid related blood test results, so we can get a better idea of what's going on with you.  Be sure to include reference ranges, which vary lab to lab and have to come from your own report.

[smartygirl]

Switched so often because dr. (integrative medicine MD) was baffled. He was reluctant to believe the reaction was supplement related. He wanted to do a compounded natural med but I was trying to avoid the cost so asked to try WP as long as he wanted to switch. The pharmacists were very concerned that I go from Armour to WP since they were both natural. When I continued to be in severe reaction on this as well, the NP switched me to levo which the pharmacists agreed with. Meanwhile I left this dr. and got a new PCP and an endo. The endo switched me to Tirosint and lowered the dose. At this time many of the gastrointestinal symptoms I was having improved and the rushing heat I was feeling inside my right leg gradually diminished. So, I was on Armour for 9 weeks, WP for only 2 weeks (yes, with some frantic indecision in that time period, I was in high distress and confused by all the suggestions), levo for 12 weeks and now Tirosint for the past 10 weeks. The surface dryness to my legs, arms and face and face redness has gotten worse since Tirosint.

The benefits that I noticed from the medication is that hands and feet not so cold, 4-5 day long headaches gone, constipation much improved, decreased appetite. I don't want these symptoms back, but I can't live the way I am living now.  It has been and continues to be a nightmare and I'm not exaggerating. While I don't run marathons I do run half-marathons (not currently because of all this) so I know my endurance and tolerance for discomfort is higher than average.

In my search for help, I have read some posts in which people say do not go off thyroid medication. This has contributed to my anxiety because I feel trapped. Your suggestion that I can go off is a relief. Will my thyroid still work?  My endo said my thyroid would reset itself to where it was before medication, which, again, made me feel relieved. But when I told my PCP what he said, she kind of cringed. Again, conflicting information contributing to my anxiety. I don't want to end up with the initial symptoms being worse.

Much thanks.

[Barb135]

You've changed thyroid medications so many times, you can't really tell where you are.  Why switching so often?  It takes 4-6 weeks for a dosage of levo to reach full effect; likewise, it takes time for T4 to get out of your system.  It looks like you also tried Levoxyl; what about Synthroid?

You might try waiting a few weeks to get all of the med/supplements out of your system, then try Tirosint, which is hypoallergenic.  It's quite expensive, but the company has programs to  help pay for it, if you can't.

[Red_Star]

Well that was long lol. And that is a lot of supplements. I had a four month acne rash over my face and entire chest belly for four months as well as major shortness of breath for three days due to vitamin B12 injections. It states this reaction is rare (rare is the new normal for me lol).  I had to stop injections and then wait four months for that acne rash to go away. I now use sublingual B12 spray but too much B12 causes blackheads all over my chest and belly.

I also have hives when I'm hyperthyroid.  Splinter haemorrages and hives are the symptoms that show up before any other hyper symptom. Hives are a possible symptom of both hyperthyroidism and hypothyroidism.