Seeing Endo #2 - please help!

If you read my previous posts, this all started about a year ago. Thyroid tested several times (not all tests that should be done, though) and every Dr says since numbers are in-range, they're normal. Even saw an Endo that ran everything EXCEPT T3 (FT3 or RT3). She said I was vit D and B12 deficient. Sent me back to my primary for b12 and he was nasty, saying, "You're not b12 deficient - why did she send you to me??" Then he was nasty saying that I could take all I want but there was nothing wrong... I now have an appt with another Endo. I KNOW something is wrong! I have such bad symptoms: painful, heavy legs, ankles don't want to bend, feet hurt to walk on them, legs/ankles/top of feet swell, left hip makes an audible snapping noise in the morning, total and utter exhaustion, brain fog, 30 pound weight gain (even though I barely eat), eye twitch, was cold all the time, now I sweat heavily when I exert myself, my temp is generally low (97 - 98.1), night sweats, cystic acne, etc. I am the completely opposite from the person I was last year. I used to be up and going 20-22 hours a day, I was productive, intelligent, and confident. I was fit bc I have superior self-control with my eating. Now I could sleep all day long and never feel rested. My self-esteem and confidence have been damaged by my brain fog and large amount of weight gain. I still control my food strenuously, but I continue to gain anyway, which is so frustrating, that I cry often. My family thinks I'm "loosing it" mentally. I just want someone to figure out what's wrong, and help me!!

It seems that my TSH and FT4 are continually at the bottom of the range. I know this is not the standard hypothyroidism. I've researched extensively and found it could be secondary hypo, estrogen dominance, T4 to T3 conversion process, adrenal insufficiency or what???? What tests should I ask for at the new Endo appointment?

T3, FT3 and RT3?

TRH test?

TBG test? High = hypothyroid

PREVIOUS BLOODWORK:

1/2016:

TSH 1.23 (0.178-4.530)

T4 7.2 (4.9-12.9)

T3UPTAKE 30.9 (24.3-39.0)

FT4 0.95 (0.80-1.73)

FT4 INDEX 2.2 (1.5-3.8)

T3 TOTAL 134 (72-180)

IRON 116 (30-160)

6/11/2016:

TSH 0.458 (0.40-4.2)

T4 TOTAL 6.4 (5.0-12.2)

Vit D,25-HYDROXY 18.9 (30-100)

11/1/2016:

FT4 1.0 (0.9-1.8)

12/15/2016 Endo:

Iron total 74 mcg/dL (40-190)

Ferritin 27 GN/mL (10-232)

FT4 1.1 ng/dL (0.8-1.8)

Vitamin B12 240 pg/mL (200-1100)

Folate 9.9 ng/mL (>5.4)

!Thyroid Peroxidase AB 8 IU/mL (<9)

An exclamation mark (!) indicates a result that was not dispersed onto the flowsheet. (What the heck does this mean??)

Anti Thyroglobulin Antibodies <1 IU/mL (<=1)

Cortisol 7.4 mcg/dL (taken at noon) (Cortisol a.m. 4.0-22.0 / Cortisol PM 3.0-17.0)

Testosterone (Free & Total) 42 ng/dL (2-45)

Vitamin D, 25-OH, TOTAL 22 ng/mL (30-100)

Vitamin D,25-OH, D3 22 ng/mL

Vitamin D,25-OH, D2 <4 ng/mL

25-OHD3 indicates both endogenous production and supplementation. 25-OHD2 is an indicator of exogenous sources such as diet or supplementation. Therapy is based on measurement of Total 25-OHD, with levels between <20 ng/mL indicative of Vit D deficiency, while levels between 20 ng/mL and 30 ng/mL suggest insufficiency. Optimal levels are > or = 30 ng/mL.

TSH III G 1.05 mIU/L (0.40-4.50)

Sooooo what are your thoughts?? What's happening to me? How do I get this new Endo to "see the light"? What additional testing should be done?? BTW, my appt is March 28th at 9:30 am. Also I am supplementing 4,000 vit D3, 5,000 b12 methylcobalamin, and a high potency multi vitamin from the vitamin store...

Thanks so much,

Melissa

18 Replies

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  • Just went to a local urgent care center for a sore throat and sinus infection. Dr saw my Endo blood results. She also said nothing wrong with my thyroid. I asked "Shouldn't FT4 be in the upper range?" And she said, "That's why there's a range - what's normal for you may not be normal for someone else..." WHAT??!? I didn't really want to get into with her, but showed her the swelling in my legs. She said that could be from a leaky vein. Not from kidney or cardiac bc she checked my results and they are all good. Told me to go back to primary. Said I need lots of testing - she thinks my symptoms are a combination of medical conditions -- premenopausal, maybe rheumatoid arthritis, lupus, etc... I am quickly getting more and more discouraged... honestly, sounds like it would be easier just to kill myself than find an answer. If it weren't for my daughter, I probably would.

  • MelissaRz,

    If you are not taking Levothyroxine then FT4 is likely to be around mid-range. It's patients who are taking Levothyroxine who are advised that they need FT4 in the upper quadrant to convert to sufficient FT3.

  • Oh. Ok. Good to know. No, I'm not taking levothyroxine. Not taking any medication right now, for anything.

  • I think my FT4 is kind of at the bottom of the range, though.

  • Hi Melissa,

    Yet another sad tale.... Why oh why is it so difficult to get help and support from medical professionals??

    You will get some replies from members of this forum who understand a great deal of things and who have been members for many years having acquired a great deal of knowledge through their vigilant research.

    Sorry, but what is the 25OHD test for?What does it mean?

    Wishing you much luck with the appointment with endo.

    Take care.

  • JGBH,

    25OHD is the vitamin D test.

  • I hope someone can shed some light on my issue... I'm starting to lose hope. So sick and tired of being sick and tired. I just want to go back to the person I was a year ago -- the energetic, thin person who went for 20-22 hours a day, and who felt good physically.... seems like a lifetime ago.

  • I understand totally how despairing it can get when feeling so very ill and no help comes from a GP.

    You will get some ideas and suggestions from the forum . Just hang in there.

  • Hi Clutter,

    Thank you so much... feeling stupid.. but always best to ask. I thought it probably would be Vit D related from the context it was written in.

  • MelissaRZ,

    I don't know why thyroid peroxidase antibody 8 is flagged. Thyroid peroxidase and thyroglobulin antibodies are negative for autoimmune thyroid disease (Hashimoto's).

    TSH 1.05 is low-normal but FT4 1.1 is only 25% through range which is low and may indicate central hypothyroidism due to pituitary or hypothalmic dysfunction. Your GP or endo should be able to do a pituitary function blood test to check.

    B12 241 was low. healthunlocked.com/pasoc can advise about B12 deficiency and folate.

    Ferritin 27 is also low. Ferritin is optimal halfway through range so you could supplement iron with 1,000mcg vitamin C to aid absorption and minimise constipation.

    It will take a while to raise vitD. You could probably double your dose to 8,000iu for a couple of months and then reduce to 4,000iu.

  • Ok thanks for the vit D tips. My idiot GP told me to take 2,000 iu/day. I knew that was too low, even for a maintenance dose, which is why I doubled it. I will take the 8,000 like you recommend.

  • Vitamin D can become toxic if taken to excess. Get your level re-tested in about 3 - 4 months or so.Once you've reached an optimal level you will need to take a lower dose of vitamin D to maintain the optimal level.

    For dosing yourself, this chart may be useful :

    grassrootshealth.net/media/...

    Be aware that units of measurement are different in the US for many things, including vitamin D (where ng/mL is used), so if you read stuff about vitamin D on this forum the numbers people are getting may be quite different to yours. That is because the majority of us are from Britain, and here the units of measurement for vitamin D are nmol/L.

    If you ever want to convert ng/mL to nmol/L or vice versa there is a "serum level converter" on this page, right hand side, half way down the page :

    grassrootshealth.net/

  • MelissaRz some questions :

    1) Which country do you live in?

    2) What circumstances apply when you get blood tests done?

    I know you are currently untreated, so timing of thyroid meds doesn't apply to you (yet), but please arrange blood tests in future for early in the morning, by 9am at the latest, and stick to the same conditions for future tests.

    Also get blood testing done while fasting overnight (except for water, which can be drunk freely), and also delay breakfast until after blood has been taken.

    January 2016:

    TSH 1.23 (0.178-4.530) 24% of the way through the range

    FT4 0.95 (0.80-1.73) 16% of the way through the range

    IRON 116 (30-160) 66% of the way through the range

    11th June 2016:

    TSH 0.458 (0.40-4.2) 1.5% of the way through the range

    Vit D,25-HYDROXY 18.9 (30-100) Under the range

    1st November 2016:

    FT4 1.0 (0.9-1.8) 11% of the way through the range

    15th December 2016 Endo:

    Iron total 74 mcg/dL (40-190) 23% of the way through the range

    Ferritin 27 GN/mL (10-232) 8% of the way through the range

    FT4 1.1 ng/dL (0.8-1.8) 30% of the way through the reference range

    Vitamin B12 240 pg/mL (200-1100) 4% of the way through the range

    Folate 9.9 ng/mL (>5.4) Much too low - needs to be triple your current level

    !Thyroid Peroxidase AB 8 IU/mL (<9)

    Anti Thyroglobulin Antibodies <1 IU/mL (<=1)

    Cortisol 7.4 mcg/dL (taken at noon) (Cortisol a.m. 4.0-22.0 / Cortisol PM 3.0-17.0)

    Testosterone (Free & Total) 42 ng/dL (2-45) I would think Free Testosterone alone might be a better thing to measure, but don't really know about Testosterone

    Vitamin D, 25-OH, TOTAL 22 ng/mL (30-100) Under the range

    TSH III G 1.05 mIU/L (0.40-4.50) 16% of the way through the range

    *****

    Okay, I've copied your results into this post and deleted the things I know nothing about or aren't useful. It then became obvious that you have never had Free T3 measured. Total T3 doesn't tell you anything useful, Free T3 does and it is really important that you get it measured.

    Based on the kind of tests your doctors are doing, I'm guessing you live in the USA. If you look at this page :

    stopthethyroidmadness.com/r...

    You can see which tests STTM recommends. You will also see part way down the page some advice and suggestions on how to get tested in the USA without having to involve an insurance company or a doctor.

    For optimal lab values see this page :

    stopthethyroidmadness.com/l...

    This site also has info on optimal levels for many test results, although they are scattered over the site on lots of pages so you will have to dig a bit and do lots of reading :

    rt3-adrenals.org/

    *****

    Your vitamin B12 is far too low, but I see you are supplementing.

    Your vitamin D is far too low, and I agree with Clutter on how much you should supplement.

    Your folate is too low and should be supplemented.

    Your iron has dropped a lot and your ferritin is too low. See this page for optimal iron-related results :

    rt3-adrenals.org/Iron_test_...

    *****

    If your ankles don't want to bend and the bottom of your feet hurt when you step on them the chances are that your Free T3 is low. (I would suspect the problem is worst when you first get up in the morning, it usually is.) You probably have a condition called plantar fasciitis and it is common amongst hypothyroid people. Improving Free T3 will help a lot, and so will improving nutrients, but I think the Free T3 is the most important. I had plantar fasciitis for years, and it went away when I started treating my thyroid.

    *****

    When people take vitamin D they need to take other nutrients along with it. Vitamin D increases the amount of calcium that is absorbed from the diet. You want that calcium to go into your bones and teeth, not lining your arteries. For that you need vitamin K2 (not K1), and magnesium. Read posts by SeasideSusie by clicking on her name and looking at her profile and posts. She has a lot of advice on K2 and magnesium.

    Note - improving magnesium may well fix the problem you have with eye twitching.

    *****

    Iron - yours is too low. You need to find a supplement that contains a reasonable amount of pure iron. The maximum you should take a day is roughly 200mg pure iron, divided into 2 or 3 doses. Many people can't tolerate iron very well and need to halve that. You will also need to take 500mg - 1000mg vitamin C with each dose of iron to help iron absorption and to avoid constipation. Iron must be tested regularly because it is poisonous in overdose.

    This is a good link on the subject of iron, written by one of the Admins here :

    dl.dropboxusercontent.com/u...

    If you try one iron supplement and can't tolerate it, lower the dose or try a different one - there are lots to choose from.

    *****

    You talk about having good self-control with food, and how you are still gaining weight despite eating very little. This may be at the root of quite a few of your problems.

    When the body detects that famine is occurring (and not eating enough by choice counts as a famine), it lowers thyroid hormone output, lowers conversion from T4 to T3, and increases the production of Reverse T3. The whole idea is that you are being forced to slow down by your thyroid hormones. Evolution has determined this is necessary to keep you alive until the famine is over. Cutting your food even further means your body reduces thyroid output even more, and maximises fat deposition (so you get even fatter).

    Anyone who is hypothyroid needs to eat a good diet with plenty of good fats, not too much carbs and some protein. There are lots of eating plans that incorporate this idea - some suggestions :

    diabetes.co.uk/lowcarb/ */ This is free - you only have to register */

    marksdailyapple.com/

    realmealrevolution.com/

    theharcombediet.com/

    Try to think of your diet as something which is going to maintain your health, not something you have to starve yourself for. If you eat right then your thyroid hormones should improve and your body may lose some of the fat without trying.

    The same problem (low thyroid hormones and getting fatter) occurs when people exercise to extremes. You need to do some gentle exercise, but doing too much will raise your cortisol. High levels of cortisol will reduce thyroid hormone conversion. And so you get fatter.

  • Wow, I owe you soooo much for taking the time and effort to respond to my post in such a detailed way!!! I will read up on every link you sent. I have been researching all of this in whatever spare time I've had since November, and I won't give up until we/they figure out how to fix me... I had been feeling pretty good and was pretty darn energetic, before I was hospitalized with swine flu, pneumonia, allergic asthma and infection. I blame the prednisone they gave me for a month or two, that started this all off. I now feel dead tired, and feel like I'm 100. I'm achey, I move slowly, and I think even slower, in fact I often search for words because I can't think of common words. Very frustrating for someone that has always been considered quite sharp and bright. I'm sooooo thankful you've put a name to my painful feet. This just started a few weeks ago, and yes it happens mainly in the morning after just getting up, although sometimes I feel a bit of it at night too; just not the same extent as in the morning. I can't even explain the sensation but I cry out with every step.

    Anyway, THANK YOU from the bottom of my heart! I appreciate all you put into your response!! I will DEFINITELY ask the new Endo for a FT3 and RT3 test. My appt is 3/28 at 9:30 in the morning. I had to wait a month for the appt but it's the earliest I could get. I got this Endo from a friend who said she always had the symptoms but was always told she was not hypothyroid. This Dr treated her based on her symptoms and not her numbers. So I am hopeful he will do the right thing. Fingers crossed and praying everything will work this time.

  • I blame the prednisone they gave me for a month or two, that started this all off.

    Ah, that might explain a lot. You gave a cortisol level in your post :

    Cortisol 7.4 mcg/dL (taken at noon) (Cortisol a.m. 4.0-22.0 / Cortisol PM 3.0-17.0)

    but I couldn't really comment on it. It was obviously a blood test, and I'm not familiar with interpreting cortisol blood tests. Although I have to admit your level looked very low. If you were prescribed prednisone for a couple of months, at the end of that time were you weaned off it slowly? Or did you just stop? What dose were you taking?

    You should read about prednisone here - it may be life-saving in some circumstances, but it isn't a drug to take casually :

    drugs.com/prednisone.html

    It is possible (or even likely) that your adrenal glands were very upset by the prednisone, particularly if you were given a high dose and/or were taken off it without tapering. And a blood test won't tell you enough to know for sure. You would need to do a saliva test. This link I gave you earlier will tell you how and where you can get a saliva test - please be careful about what you order, some are good and some are bad, so follow the STTM advice :

    stopthethyroidmadness.com/r...

    You could ask us if you wanted more help before the test.

    Once you've done this test, get your results including the reference ranges and post them on here in a new post, and then ask for feedback.

  • Human bean you asked if I thought maybe the prednisone had an effect on the adrenal glands -- yes, I did think that could be a possibility. That's why the Endo tested my cortisol, but it appears to be negative, according to the blood test.

    I guess in retrospect it was not accurate to blame the prednisone for starting this whole thing, because i started losing a ton of hair on January and feeling run down enough that I asked my allergist to run a thyroid test, since he was running blood anyway. The symptoms just got progressively worse from there, and next thing I knew I couldn't walk 3 feet without being out of breath so badly, that it took 5 minutes for it to calm down again. I was so close to death it wasn't even funny. Hence the need for the prednisone, which actually saved my life.

  • Yes i am in the US. New York City

  • I was so happy to have a name to put with my painful feet and ankles! But now I'm not so sure... my incompetent GP said to give up on the thyroid; I was fine. But maybe I should look into sleep apnea for being the cause of my exhaustion, and after that maybe look into Rheumatoid Arthritis... I was like, "What??!?" But honestly, recently I have had a few days where there was pain in my left hand, where to rest it on my hip was painful, and I've been complaining about my left hip (besides being painful, it also clicks loudly in the morning), my back (although that pain is not new - I had back surgery 3 years ago and still have 3 herniated disks and degenerative disk disease), and my ankles feel like they won't bend and my feet hurt to walk on them... maybe he's right and it's RA! Today I woke up and my right hands so bad, I can't even pick up the coffee pot. From what I understand, RA is an autoimmune problem and attacks the joints, almost like how Hashi's attacks the thyroid bc of an autoimmune problem. Could they be related? Is it possible that I will test positive now for Hashi's?? I'm praying I don't have RA, but I've been living with pain for long enough! I was hoping to feel better, not find out I am going to get progressively worse!! And the treatment drug is Humira that says on the commercial that it causes cancer - and I know someone who got cancer from it, from treating their Crohn's Disease too. Not sure where to start... can't see Dr until Monday when he's open. I don't think this merits a trip to the ER.

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