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Avatar universal

I'm b-a-a-c-k ! New labs, please help interpret

Wow, FINALLY back on the forum ! None of my passwords worked, even started new account...finally the admins. say it is fixed. SO, you will have seen me here as artfemme AND as Jackie1923, w/ labs posted under each. I will now be posting as "artfemme" again. Gimel, you were especially helpful when you wrote to me as Jackie, and I couldn't get back to you because of the password problem, sorry. Also the same to Barb, Stella, and Tamra. Gimel, you wrote to me about finding a new doctor. I now have a PPO and can escape the idiots in my former medical group ( I saw them all, including the special doctor at the pituitary clinic, and ALL of them would only refer to my TSH, which is historically low.) SO, if any one can give me help finding a doctor in Los Angeles who will deal w/ FREE T-3 and FREE T-4, I would be so very appreciative. I am currently relying on my pcp and my own wits. I have a multi-nodular goiter, which has gotten slightly smaller with medication. I am due for a new ultrasound in the spring. My anti-body tests are negative, but my sister has Hashi's.

To re-cap for anybody new: I complained about every hypo symptom in the book for about 5 years, only to be told it was just me "getting older". I lost 1/3 of my hair, including pubic, and 1/2 my eyebrows. I coughed all the time and had a really hoarse voice. I gained 30 lbs. I was hideously depressed and no antidepressant did anything but make me wacky and sick. I had worsening panic attacks that didn't stop w/ Xanax. When the endo finally felt my throat and sent me for an ultrasound for an enlarged thyroid, she still didn't medicate me because my TSH was low-normal. The nodules grew, so a year later she finally put me on Synthroid to arrest the growth which did nothing for my symptoms.The Synthroid was changed to the generic. I was visibly myxedemic and ended up in the hospital w/ psych symptoms.

I read Mary Shomen's information and insisted that my pcp prescribe  Cytomel in addition to generic T-4. My depression instantly ceased and I lost 15 lbs. in 3 weeks, with more over the next few months without a change in diet or exercise. My hair slowly started to grow back. The dose was 75 and then 100 mcg T-4 plus 25 mcg Cytomel. After about 6 months, the Cytomel was changed to the generic and 4 months later I had dizziness, irregular heartbeat, agitation and difficulty sleeping. The T-3 was reduced to 12 1/2 mcg and I crashed.....gained 15 lbs in 3 weeks, severe depression, brain fog, dyslexia, couldn't focus my eyes etc.etc. I've proceeded to fight my way back....going to 3 different endos who said I shouldn't be on meds AT ALL because my TSH is below 1. The last one cut my meds and my pcp made me do it to prove what would happen. I have now gained back all the weight I had lost, 26 lbs., and most of the hair that had grown back fell out again, including pubic. Not the eyebrows, thank goodness. My pcp is letting me adjust my dosage and is testing for my FREE's but she really doesn't know enough to do more than watch.

MOST RECENT LABS:

December 2, 2010
75 mcg generic T-4  15 mcg Cytomel (changed back from generic)

TSH          .14       (.39 - 4.60 )
FREE T-3   2.7      ( 2.4 - 4.2 )
FREE T-4   1.2      ( .8 - 2.7 )  

VIT D          34      ( 30 - 80 )     had been 25, take 2000 units VIT D a day
In an effort to bring the FREE's up, T-4 was increased


January 14, 2011
100 mcg generic T-4   15mcg Cytomel

TSH            .08      (.39 - 4.60 )
FREE T-3    4.0      ( 2.4 - 4.2 )
FREE T-4    1.3      ( .8 - 2.7 )

My lipid panel and comp. metabolic panel are now very good mid-normal ranges, whereas before they were wildly off. My historic normal low cholesterol goes WAY up when my meds are lowered and my calcium levels go off. I have developed osteoporosis even though have taken 1500 units of calcium citrate a day for 15 years at least and am on HRT for a long time. My blood pressure is back to it's historic normal 124/72. When I was hospitalized it went up to 198/96....they took me off thyroid meds completely while I was in the joint, and my ankles swelled so much I couldn't fit in my shoes !

I'm encouraged to see that I apparently don't have a conversion problem, but don't understand what to do to get my T-4 to go up.  Am thinking 125 mcg T-4 and 121/2 mcg Cytomel ? The Cytomel is hideously expensive. I found an old metabolic panel from an annual physical I had way back in 1989, and at that time my TSH was .89, so I keep telling the doctors that MY norms are never going to be "standard".

Thanks so much for any advice, you guys are the BEST, and I'm so glad to be back. I hope the password will work and I will stay "artfemme" !
17 Responses
Avatar universal
Taking a T-4 med can totally overpower TSH making the TSH test almost.  Notice I said almost, useless.

I'm not sure that T-4 must be raised as it is T-3 that does all the work.  So at least in my simplistic mind,  Get the T-3 level right and who cares what the T-4 level is.

You said you don't have a conversion problem.  From what you describe above I would disagree with that statement.  You were on higher dosage of T-4 and you had terrible symptoms.  When however you started taking the T-3 med your depression and most every one of your other major symptoms went away.  I would conclude from that that in fact you DO have a conversion problem.  As when you added T-3 you got IMMEDIATELY better.  Too bad the Cytomel is so expensive as it seems like that is all your body can tolerate.

TSH is an indicator only.  Once it is determined that you have a Thyroid issue then it is T3 and T4 that matters.  And probably T3 moreso.

Most things I've read indicate that for someone on T4 Med only the TSH must be at or BELOW 1.0.  So your TSH is line with that.  Also others here report that with high dosage of T4 that the TSH is not really measurable.  It is the treatment of symptoms that matter.

I will ask you this question;  Did you feel the best when you were on "100 mcg T-4 plus 25 mcg Cytomel" as you stated above when you lost weight, eliminated depression and grew your hair back?  IF so why the heck would you want to vary too much from that?  I would think starting there and moving very slowly would be the best course of action.  But I would think

Do not chase labs.  Chase symptom relief!  Scientific people like Dr's can have a tendency to chase labs.  Which for most is TSH only.  But the same trap is there for T3 &T4 to "chase" to get to a certain number or numbers.  If you feel good leave well enough alone!
Avatar universal
Thanks so much for responding. I didn't post the entire boring history of my case, and I have a lot of labs. Have been dealing with this since at least 2004, with doctors telling me there is nothing wrong with my thyroid.

Believe me, I am not "chasing labs", although it is my understanding that most people feel at their best when both their FREEs are in the upper 1/3 of the range.I EXPECT my TSH to be low, although doctors panic about it and tell me I'm going to give myself a heart attack and dissolve my bones.

My current physical symptoms are that my hair continues to thin and I continue to gain weight while eating very little and doing moderate exercise...which includes water aerobics 2x a week. My waist has grown 3 inches in the last 10 months and I have 'cellulite" (or "jelly-like subcutaneous myxedemous material" , who knows ? ) al over my body. I continue to have foot cramps, although they are less and the leg cramps have ceased. I have night sweats, yet am cold and have to wear socks to bed.

I said I don't think I have a conversion problem because when I increased my T-4, my T-3 went up. (although the T-4 barely moved at all) I am asking for help interpreting these labs because I finally feel completely lost. I had to lower my meds to prove to my pcp that what i suspected would happen to my body was valid. It was. It's important fro me to maintain her confidence in my judgement because all the endos say I need to go off meds entirely. She gives me my prescriptions, so I need her in my corner.

This is also why I'm asking for help in finding a good doctor in Los Angeles or Santa Monica.  Thanks again for your imput.
Avatar universal
Also, I forgot to say that when my meds were reduced, my tinnitus came back louder than ever and still hasn't gone away. Thanks.
Avatar universal
Is that range on your FT4 correct?  2.7 is an unusually high upper limit for FT4.
Avatar universal
Yes, goolara, that's what it says on both the reports. I have so many labs, but these 2 are the most recent, done through Cedars-Sinai Hospital's lab, who sent the FREE T-4 part to Quest  Diagnostics in San Juan Capistrano. (I live in L.A.) They sent the FREE T-3 To be done by ARUP Laboratories in Utah ! I'm a little annoyed because my other labs were done through LabCorps, so it's hard to compare them with each other. I recently went on Medicare, don't know why they did this.
Avatar universal
Thanks for checking.  FT4 range is usually something like 0.8-1.8 (give or take a tenth), so an upper limit of 2.7 makes your lab's range almost twice as broad as it usually is.  Just wanted to make sure...  The lab switch is curious.  

If you want to compare labs with different ranges, figure the percentage of range each is:

upper limit of range - lower limit of range = X   (2.7 - 0.8 = 1.9)
your result - lower limit of range = Y   (1.3 - 0.8 = 0.5)
divide Y by X   (0.5 / 1.9 = .26)

Do that with the other labs as well, and you can compare the results as if the ranges were the same (mathematically speaking, anyway).

I have to agree with you that there doesn't seem to be a conversion problem.  Comparing the two labs you posted, when you maintained a steady dose of T3 (15 mcg) but increased T4 from 75 to 100 mcg, your FT3 soared.  I'm assuming you didn't take your T3 meds before either lab???  If that's not the case, it would skew labs seriously.  However, you were still on 15 mcg Cytomel, so I think we have to say "no conversion problem" with caution.

You said that you felt your best when you were taking 100 T4 and 25 T3 (I believe).  Do you have labs from that dosage for comparison with current labs.  Those would be an excellent guide to where you, INDIVIDUALLY, need to go.  Post 'em if you got 'em.  
Avatar universal
On further thought...

As I said, mathematically speaking, that's how you translate from one range to another if the units are different, etc.  However, since you are comparing your results to your prior results at this point more than to the population reference range, I'd compare the results straight across as raw numbers as long as the units on both lab reports are the same, which I believe they are.
Avatar universal
You are the sweetest. Thanks for taking the time !
  Part of the frustration I was having with my password problem and this site is that I spent hours entering labs and most of the time, they disappeared when I clicked "post comment". Then I started another account under Jackie1923 and posted a bunch of labs that Gimel was kind enough to comment on....but then the password problem happened again, and more labs got "eaten"and I couldn't get back on the site. If I could find the time, and assuming the admins have fixed the problem, I should enter them all in the Tracker. There are so many years worth, every 6 weeks or so. Also ultrasounds of my thyroid and bone density tests. I've been monitoring the regulation of my cholesterol, Kidney functions, glucose, calcium, and Vit D all along. It's incredible how reactive they are to changes in my meds.

The first lab I posted above, I didn't take the Cytomel until after the blood was drawn. No doctor had ever said to do this even though I asked. They said it wouldn't make any difference. They also said that the fact that I take estrogen and progesterone makes no difference either even though I cycle it and I know it's a thyroid hormone binder.

The second above lab, I forgot and took the Cytomel in the morning. It takes forever to get an appointment w/ my doc, so I sat around in her office until almost 5 hours had passed since I took it. Knowing the life span is about 4 hours, I hoped it would be ok, but now feel that I can't be sure of the comparison.

The problem w/ most of the other tests is that they didn't test the FREEs...just totals and TSH. I sat down and made a chart of all my tests, plugging in the dosages of meds as best I could, hoping it would be helpful to the last endo. But NO, he wasn't interested. I told him that one thing I had noticed was that even though my TSH was always very low, it doubled over the course of a couple of years before I was put on medication. He said that was meaningless....but I don't think it is. And the other thing that I noticed was that I started feeling badly and having hyper symptoms of joint pain, dizziness, irregular heartbeat and anxiety about 4 months after they changed the Cytomel to the generic. That's why I made them put me back on Cytomel. But now my hair has fallen out again and I'm steadily gaining weight.

I'm terrible at math, but I'll try to understand your formula and also just refer to raw numbers as you suggested and see how things shape up. Then I'll get back on here. Do you, by any chance have the website for TopDocs, I think it's called? I've seen that mentioned on the forum before and I need a new doctor.

Thanks again !!  
393685 tn?1425816122
I think you are really close on getting things put back together with this PCP but only you know for sure of you need to look for another. Bare in mind that you could be faced with going backwards in treatment. I can provide to you some doctor info but I am leery to do that on seeing how close you may be getting things licked... let me know if you want that info.

OK big BULLET points I read here that could help you.

Are you addressing the low Vit D levels? Your right on the references but try to get that to 80ish and see if that helps.

I don't see conversion problems either. But you do extremely well on the added T3 meds and you should keep that in as something you will need. We've been hearing about generic Cytomel on the shelves to cut cost. Are you taking that? I'm thinking the generic Cytomel could be OK due to its direct release more than on a T4 generic pill. I don't think generic T4 is very good for many.  Taking Cytomel T3 prior to labs is something you don't want to do. As said, its direct so it does show some false levels and will have a raise in T3 hormone on the Free T3 lab. It can also dip a conversion Free T4 lab too if its at its height of potency in the body. The lifespam of the med is about  4 to 6 hours but the "hormone" can be present up to 8 hrs and will dip then.

I think you need the XR release of Cytomel T3 meds instead of short lived T3.

Also I don't think T4 Synthroid is your perfect meds for you. Do more reading on the Tirosint T4 and see of you can change to that.

Address that Vit D issue. If I read it right you are taking 2000ius daily? I'd beef that up alot more. Like 8000 to 10000 ius and retest it after 3 weeks to see if that helps.

I t r e s t i n g....... on the hair loss still with the flux on T3...... Not maintaining the T3 correctly can result in hair loss however you are on other hormones too that are linked to that symptom. My question would be direcly looking at the progesterone and knowing 100% that this isn't spilling off into access testosterone as that is where I think your hair loss could be coming from - more than thyroid. Also both estrogen and progestrone have to be monitored so very close - especially estrogen with thyroid. Estrogen robs the thyroid in the iodine atoms and the meds you take for thyroid may not be truly balancing everything out with iodine levels in the body. You may need to look at some iodine supplements to balance and couteract those estrogen levels. Estogen dominance can mock low thyroid and raise other levels. It can also generate a PCOS problem - liked again to iodine.

Avatar universal
How great to hear from you, Stella ! I have really missed all this wise counsel. Thanks for the vote of confidence, although I'm not so sure it's completely warranted. I AM better than my worst but have a lot of symptoms still. Just keep on keeping on, right? When I say I'm looking for a new doctor, I mean another endo. My PCP recommended I see someone at USC who Mary Shomon criticized for remarks he made in the LA Times equating hyperthyroidism to the feeling of falling in love. How stoopid is THAT ? He also was the head of the National Thyroid Association, which I hate to say now makes my skin crawl, imagining more fights about TSH. My doc is nervous because she doesn't know enough.

It was a huge struggle to get my PCP to test for VIT D, she just about laughed in my face but I told her my acupuncturist said I needed it....she was so right, it was 25 initially. I thought I should try to get it higher too, but the last test coincided w/ that "report" that said people were taking too much D and adjusting the norms downward, so she said 34 was "great". I told her that I have a friend w/ fibro whose doc has her taking masses more, and my doc laughed and said "50,000 units, right?" , which IS right, so it's not like she doesn't know anything. But then I asked her if she was aware of the relationship between hypo and fibro, and she wasn't. Sigh. An interesting thing was that when the last endo insisted on lowering my meds, my VIT D level plunged, even though I kept taking the same amount.

I will try upping my daily dose and see if I feel any better...less muscle pain would be good, and also  no foot cramps. But my main concern with D is that I developed full-blown osteoporosis while being on HRT and having taken 1500 units of calcium citrate daily for about 25 years and eating plenty of dairy. At one time my labs consistently showed my calcium level was too high and my doctor had me cut calcium supplement to 1/2 the dose. It's taken a year but the calcium lab is now w/in norms. I was very myxedemic (doc says not, but apparently doesn't know the difference between edema and coma in reference to that term. I was grossly swollen everywhere, non-pitting, total pumpkinhead..) and have read that disregulation of the thyroid process can cause the body to be unable to absorb calcium from the blood, therefore it is leached from the bones. It is hard to discuss this w/ people who don't KNOW or who dismiss you for being "uppity" or something.

It's late, so I'll tell you about the Cytomel and HRT conundrums another time. I am so grateful for all the help, everybody. Nobody else LISTENS. Many blessings.
Avatar universal
Dear Stella,
I have a horrible feeling that the post I made previously may not have reached you, that I forgot to attach the 5349 to your name. If so, I hope you can still read it, above.

As to the Cytomel and HRT questions, especially concerning hair loss:

I haven't noticed a problem w/ generic T4, I've been on it for 2 years now. Neither Synthroid or generic had any effect until I added Cytomel/T3, so I guess I don't have anything to judge it by. My hair was falling out BEFORE I was on medication (they said this was just a sign of aging), but was growing back ever since I added T3. Now, since last September when the endo lowered my prescription, I seem to have lost all that had grown back, and more. Most of the loss is on the crown of my head. I am becoming frightened because the loss is accelerating and as of the last 4 days, my scalp has started to itch. It did this when it fell out before, but stopped when I went on combination meds. I do not have dandruff or any other sign of a dry scalp disorder. For a long time I was getting painful pimples or small boil-like sores that seemed to be hair follicles. The dermatologist said she didn't know why and gave me a topical antibiotic that does nothing. She can't tell me why I have a rash either, and this was one of the first signs of my illness. The rash comes and goes and has about 3 different manifestations.

About 4 months after I was switched to generic Cytomel w/out a dosage change, I developed hyper symptoms, as I mentioned in my 1st post. I have read that the problem w/ the generic other than the allowed 10% + or - fluctuation in strength (!!!!) is that the cheaper fillers in the generics bind the hormone too much to allow it to release properly while passing through the gut. Cytomel apparently uses different fillers. I also have started using it sublingually, about 6 months now. I take the T4 by swallowing it as usual.

In retrospect, the very first abnormality that showed up, back in 2000, was pernicious anemia...the red blood cells were too large, and the symptom was unusual bruising. The blood doc put me on 1500 units of methylcobalamin-sourced B VITs, sublingually and I have taken them religiously ever since. When I get lazy and run out and don't take it for a  while, the bruising comes back. I have just learned that there is an association of this condition w/ hypo.

Since I've been taking HRT for quite a long time, why would that start to cause hair loss? I do not have PECOS as far as I know. I went off the hormones for a year to bad effect and the gynocologist put me back on them. At that time, she wrote that she suspected I had subclinical hypothyroidism. My PCP and 1st endo scoffed at this report. Before I was put on combination thyroid meds, I had such heavy periods that I would bleed through the strongest tampons in 20 minutes, all day, for about 2 days. I was way too old for that to be happening but no one cared. When estrogen and progesterone were last tested, they were normal for my age I believe. I will look up those labs. When my thyroid meds are changed, it affects my cycle dramatically and throws the timing off or makes it so that I don't bleed at all. I am consistent in the amount and timing of cycling the bio-identical hormones. My PCP doesn't want me to stop taking them while I am having so much difficulty. I think she is kind of tired of me.

Family background of auto-immune:
Mother had Reynaud's and Depuytens, Dad has Depuytens and so do I. Grandfather had gout. Great grandmother had diabetes. Sister has Hashimoto's. Brother and his son have ADHD. There is a family history of depression. My antibody tests have all been normal. My Mother died of what they said was Alzheimer's with "Parkinson's -like tremors" 5 years ago. She had every symptom of hypo, including the red rash from the knees down and horrible leg cramps, but they said her TSH was "normal". I suspect she died of untreated hypothyroidism, which mimics both Alzeheimer's and Parkinson's disease.

Does it strike you as odd that in those labs I posted above, that even though I bumped the T4 up 25 mcg, the FREE level hardly rose at all ?

Too much stuff, need to stop. Too much information? Thanks for any help.
393685 tn?1425816122
Not at all...... you look like you are having a conversion problem and could be reversing the T3 with the bump in T4. Your liver may be bogged down due to that too.

Common amoungst HRT especially with synthetic estrogen causing estrogen dominance. That's also where the cycles change and the Free thyroid labs will swing.

Seriously I think the XR Cytomel could be useful for you, even more than T4. Maybe even switching up the Cytomel and lowering the T4 for a while- and looking at the T4 Tirosint instead of adding in all the fillers of the others. Your T3 needs help to release.  T3 is not your sole answer either. Addressing the HRT issues too is needed.

I got the above post too. When posting publically anyone can read that so the 5349 isn't critical.

I know family plays a part in the roll of what we endure through our lives but its not that 100%. You are hormonally altered with your treatment plans that your family probably wasn't on 100% so your situations can be different too.

A normal FSH/LH blood draw can have variations and not pinpoint actual correct HRT treatment. Can you invest in a saliva test on your own to test these, also testing the free labs and reverse T3?



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