Comments on: 10 reasons many thyroid patients are still frustrated, angry, and sick

By: Donna Harris

Donna Harris — Tue, 22 Nov 2011 16:25:58 +0000

My hypothyroid symtoms returned within 5 day of starting the reformulated Armour. I had been doing great on the old formula with complete relief of symptoms on 60mg(1gr)qd which I had been able to stockpile for a year by reducing the dose. Now I feel horrible with all of the hypo symtoms returning plus stomach burning and bloating from the cellulose I assume. Something in the new formula has reduced the efficacy of the medication. I recommend that everyone inundate Forest Labs with complaints and urge them to revert back to the old formula. The # is (800)678-1605 x66297 and ask to file an official medication complaint. A nurse will be brought online to record your complaint information for the record. If enough of us complain they will have to take this seriously.

By: Carole Babb

Carole Babb — Mon, 24 Oct 2011 17:47:52 +0000

The biggest problem with doctors (in this case, Endocrinologists), is that they refuse to listen to their patient, they refuse to treat the patient based upon symptoms and, most important – they refuse to THINK! They just treat you based upon the protocol they were given in Med School. The patient’s symptoms are not taken into account, nor does the doctor consider other factors provided by the patient. I suffer form a neurological disorder which affects the endocrine systemn, and also take pain meds which suppress the endocrine system. Unfortunately, the four Endocrinologists I went to – knew nothing about the fact that narcotics supress the endocrine system, nor did they have a clue about the many symptoms I was having. Amazing! How can someone who specializes in the endocrine system – this is ALL they do – and yet have scant knowledge in that area? I gave the doctors a typed list of the symptoms I was having and also provided a list of the meds I was taking, and the package inserts for the meds (which discussed the suppression of the endocrine system). Each of the doctors threw all of this info to the side without reading any of it, and then proceeded to tell me that my was a puzzling case and it was going to be very hard to treat me. I informed the doctor that all I needed was to supplement the endocrine system with meds, since it was being supressed by my pain meds and my disease. The doctors refused to give me anything. I finally found an endocrinologist who was willing to work with me — she gave me Armour Thyroid and prednisone (a small amount to “kick start” the Adrenal). The prednisone was only temporary. I am now wide awake, no more fuzzy thinking, and most of my symptoms have disapeared. We are still working on just the right amount of thyroid med, but we are almost at the finish line!

I get very very bitter when I think about the two years I suffered needlessly, when the doctors refused to give me thyroid meds, despite all of the evidence showing the necessity for same. I was sleeping constantly, passing out continually, gained 30 pounds, felt sick all the time and thought of suicide constantly. I was all so needless! I just don’t understand why doctors are so unwilling to prescribe thyroid meds – it’s not like they are a controlled substance – it just doesn’t make sense. I have come to hate and despite doctors, because they just do not care how much their patients suffer – they are incredibly cruel, and for no reason. Until we pass new laws to hold doctors accountable for their negligence, the helpless patients will continue to suffer.

By: gerry

gerry — Wed, 08 Jun 2011 11:02:59 +0000

I have been on 50mg of eltroxin since last sept, and i still feel the same cold very easily, tired, headache and much more got thyroid checked again 8 weeks ago and doc says it okay but i still feel like crap . Any advice be welcome

(From Janie: http://www.stopthethyroidmadness.com/t4-only-meds-dont-work For feedback, use patient groups: http://www.stopthethyroidmadness.com/talk-to-others )

By: amanda

amanda — Wed, 27 Oct 2010 14:51:33 +0000

gabriella,

I am wondering what dosage you are on. I started erfa in March 2010, ordered 100 , 60mg tabs and seemed to be getting better. pushed it up to 90mg, felt ok but was told to drop it down ’cause TSH was .01 something. Still seemed ok ,I now ordered the larger batch of 300 still 60mg , taking it 1x day.
About 2 weeks later my hair was DRASTICALLY falling out.
Right now, I an on 90mg again b/c was tested end of Sept by my GP and my TSH was up to 6! Interesting! This is when I developed a rash on my neck AND my scalp hurts- thats when I know my hair will DUMP out of my head. extreme hair loss for 3 months and now the rash.. I am thinking that the new batch may either be contaminated / not as effective/ or could they have changed the formula as well and are not telling us?

Since you started on erfa in may and I started the 2nd batch around the same time, could there be a correlation? BTW, I did call cross border pharm. where I get the
erfa thyroid and they have not heard of any complaints. I am going to call ERFA directly today to inquire. Meanwhile I stopped taking the meds for 4 days now and took off work today to see if there is a change in the rash.

I am sorry you are feeling badly. there are other symptoms like fatigue etc. but too long to list . Maybe compounding formula will help. this may be my next step.

(From Janie: Amanda, this has nothing to do with the batch. It has to do with allowing a doc to first dose you by the TSH, which naturally goes low on desiccated thyroid and is not hyper. Second, you could have low ferritin and an adrenal problem. http://www.stopthethyroidmadness.com/ferritin and http://www.stopthethyroidmadness.com/adrenal-info Join patient groups for feedback: http://www.stopthethyroidmadness.com/talk-to-others )

By: Gabriella

Gabriella — Sat, 01 May 2010 20:44:33 +0000

Well, I’m at a loss as to what to do next…I ordered the ERFA and feel horrible. Some symptoms left, but honestly, i’m dizzy, tired, not motivated, etc. I have to chew 5 of the pills the pills up to even get them to work and they don’t really work not to mention later in the day I have supplementing w/iodine, selenium, etc. and while there is a little boost, basically I feel like crap and I’m angry and flat emotionally. I’m sick of this and really don’t know what else to try next. I’ve been on everything and honestly the only thing that ever worked was the old Armour.

(From Janie: You are probably here: http://www.stopthethyroidmadness.com/adrenal-info )

By: Nancy

Nancy — Thu, 22 Apr 2010 22:46:35 +0000

I was on the re-formulated armour for three months. I hit bottom. I had gained 60 lbs. dizzy, sick, had all the symtoms. I called to tell the doctor not to call another perscription until she could check my blood work..It was totally out of range..She perscribed Cytomel generic, Liothyronine…She had me go back in two weeks, I had lost 17 lbs., and was starting to feel somewhat better…I have now lost 27 lbs., and feeling great..We all have our own chemistry so some things work, others don’t..I thank the Mary Shomons site, and the bloggers, for helping me understand others were having the same symtoms..and what to ask for with bloodwork! I also never knew the foods you should avoid on thyroid meds..Its all working now..Good Luck To All!

By: Kelly Booth

Kelly Booth — Thu, 22 Apr 2010 22:05:32 +0000

I have been hypothyroid for over 10 years but never had a problem until last year. I have Hashimotos – my TPO is over 3,000. When I was first diagnosed, Synthroid caused seizures for me so I can’t take that. For years, I only took Cytomel. Finally in Dec, I got someone to prescribe Armour and am now getting Erfa. None of my tests are even in range let alone optimal & I am having trouble getting anyone to up my dose.

Last week, I saw doctor the sixth doctor in 11 months trying to get treatment. I took the name from the Armour site thinking he wouldn’t have a problem with desiccated thyroid. He never heard of Erfa. He doesn’t like Armour and did not understand why their name was on that site. He never heard of Cytomel. He apparently did not believe me that Synthroid caused seizures for me because that is what he thought I should be taking. I finally stopped him & said it was obvious that he could not help me so there was no point in either of us wasting our time. The stupid jerk sent me a certified letter saying that I should look for another doctor “because of my unwillingness to follow instructions and your leaving abruptly from the office.” That was the only time I had ever seen the jerk. Normally, I would just walk away but I sent him a letter letting him know that I thought he was an arrogant jerk – and yes, I did say that in the letter. Here is what my letter said:

You could have saved yourself some money and not bothered with the certified letter as I had no intentions of ever returning to your office. You are an arrogant, ignorant jerk. You obviously did not hear what I said to you before I supposedly “abruptly left” so I will repeat it in writing “You are obviously not able to help me so there is no point in either of us wasting time.” There was no satisfactory relationship to begin with – I thought you were an arrogant jerk less than one minute of your coming into the room.

There was absolutely no unwillingness to follow instructions. I will NOT take a medicine that has caused seizures for me and that fact has been proven by a neurologist. That neurologist has very good credentials, something you obviously know nothing about. Nor will I take statins when it is a proven fact that thyroid problems cause high cholesterol.

There are plenty of good doctors out there and I will not waste my time on morons that should not be practicing medicine. I know the difference between a good doctor and a bad doctor and besides being an arrogant jerk, you are a bad doctor.

By: Mariano

Mariano — Tue, 20 Apr 2010 01:16:06 +0000

Living in the USA is easy in one sense. Despite medical assurance not being accesibble to lots, and the elevated cost of Blood Lab Test, you can move into finding a good holistic doctor, (i’ve seen many and very good in differentes websites) and treat your condition analyzing all. I live in Argentina, and it’s hard to find open-minded doctors related to thyroid. Traditional medicine is the way, and TSH, T4, T3, T4L, ATPO and ATG is the more i can get. (RT3? FT3? FERRETIN? Vitamin D? Vitamin B12? Dissecated? Not a chance!) Today i came to a doctor that is like the top of the top on thyroid matters. When i show him all the material i get: “Do you want to teach endocrinolgy to me?” “Maybe you’re stress, i have a TSH of 2 and my hair falls, my skin is dry and i’m very tired, stop trying to associate all of your problems to the thyroid” “This is wierd. You have an obsession because knowing all of these test and asking me what test you want to do”.

I’m only 20 years old-male, and with “Subclinical hypothyroidism”. Having a LOT of hypo simptoms… i don’t know what to do, i know if i can travel to the USA i have lots of doctors to see.

Cheers

By: Melinda

Melinda — Mon, 19 Apr 2010 18:38:44 +0000

I feel SO fortunate! I found a NP who (gasp) listens to me!

I went in last time and told her I was feeling great and didn’t think I needed to be tested every 7 weeks. She said “really, because your numbers are telling me that you shouldn’t be feeling great”.

We had a misunderstanding and she didn’t know I was still taking my T3.

Ultimately, she said “I don’t see any reason to change your meds based on your numbers if you’re feeling this well” and we left everything alone. So I have a spring in my step, the depression has lifted, I don’t take many naps anymore and when I do it’s because I CHOOSE to not because I HAVE to and they’re about :45 instead of 3:00.

What had me feeling so well was that her MA told me that she’d found out how to get Erfa and we didn’t have to try to make due with Levoxyl and T3 since we couldn’t get Armour anymore (and quite frankly, since the reformulation it was only working marginally better than Levoxyl).

And I gotta say: Erfa kicks Armour’s A$$! I am thrilled with Canada and their lack of FDA!

By: Judy Abbie10

Judy Abbie10 — Mon, 19 Apr 2010 15:08:41 +0000

I think my husband may have adrenal fatigue.
Blood work done years ago and he was on the lower end but not in what they consider a danger zone.
Doctor and nurse were up front about what they have seen and how they thought. It was about the terrible side effects that happens to people on treatments with steriords?
So we did nothing. Not wanting to harm other parts or organs of the body.
How do you self treat with HC? Do we start at health food store. What do we buy or look for.
One note about him. He has alergies, out door stuff mostly. Feb. is bad, tree pollen. Top of eyes get dark and he can not move.
I make a call get pednisone pack or pills for him. This has become a yearly thing now. He takes for the amount of days allowed. He fells so great and has relief from pain and more engery. Is this a clue? But then it will be a bummer when meds are gone. But it has left him stronger.
Wonder if a very low daily doseage is needed, would it be good for him and do no harm. It is such a boost when used around Jan or Feb.
Any ideas out there?
One more thing we have both changed from Thyroid usp to Erfa this week. I need 2 grains and he needs 4 grains to keep blood work normal and not go hyper.
Before that on the RLC maker of thyroid and husband did not do well.
Why is this my first time to read they screwed us too by changes in their formulation? My husband kept telling me he did not fell good on Nature or Westhroid.
We are so tired of feeling sick and being in pain. Sometimes we do not know what the cause may be. Then we read again the makers of our drugs have changed the content. Did RLC mention this. I do not think so.
So are husband and I back to the thyroid being our main issue for poor health and daily pain?
Let’s see how many weeks or months do we need to wait too find out from our body?