# Newly diagnosed, numbers seem bad... would love guidence



## AKettleofFish (Apr 5, 2018)

Hi

This week I had my yearly physical and fortunately my doctor tested my TSH which was crazy high. She then added on a bunch of tests, some of which have come back and some we are still waiting on. I'm trying to get a better idea of what these numbers actually mean. They seem pretty bad....

Background info is I am 6 months postpartum. I chalked up all the symptoms to having a newborn in the house.... I mean who isn't exhausted with a new baby! I had my TSH checked in November due to low milk supply and it was normal. Which made me extra surprised at how bad these results are for only being 5 months different.

I also have a family history, my dad is hypo and has been on medication for 30 years. He's never had his TPO tested, just TSH, FT4 and FT3.

Ok, my results are as follows. I'll update if I get anymore results back.

November 1, 2017

TSH: 0.91 (0.27-4.20)

April 3, 2018

TSH 73.309 (0.350-4.940)

Free T4 0.40 (0.70-1.48)

T3 total serium 49 (71-180)

TPOab >600 (0-34) - I'm not sure if this means it is close to 600 or if they stop testing above 600...

I've been put on 50mcg levothyroxine and will have my levels rechecked in a month.

I guess I'm wondering just what these numbers really mean. They seem to be really really off....but maybe they aren't as bad as they appear. Any guidance or support would be appreciated.

Thanks!


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## Lovlkn (Dec 20, 2009)

> April 3, 2018
> 
> TSH 73.309 (0.350-4.940)
> 
> ...


Welcome to the board!!

Your most recent levels show you as having autoimmune thyroid disease.

Your Thyroid levels are crazy low - you poor thing. Be sure to retest both FT-4 and FT-3 in 4 weeks and adjust med's accordingly.

One thing you may ask about is having additional antibodies tested to include TSI ( hyperthyroid antibodies), I say this because of your normal reading of TSH back in November. Hypo and Hyper antibodies can sometimes cancel eachother out thus making it appear that your thyroid hormone results are "normal". Because you have gone so quickly into a super hypo state it would be interesting to see. Another antibody you should ask about is thyroglobulin.t Have they run an ultrasound on your thyroid to look for nodules?

I for one had both antibodies post partum so it's not out of the question and since you have family history it would be a good thing to check.


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## AKettleofFish (Apr 5, 2018)

Thank you for your quick reply! And thank you so much for your advise!

My doctor did order additional tests, which I am waiting on hearing back the results. If she didn't order the other antibody test I'll ask if she would do that. I have a video followup with her in 2 weeks to see how I feel on the meds and an in person appointment with retesting of the labs in a month.

She did not order an ultrasound. Is that something I should ask her to do?

Is it unusual to go hypo so quickly?

I'm very thankful she found this out. As I said, I attributed everything to just being tired from a new baby but I'm now hopeful I'll feel better once this is all under control. My poor students (I'm a professor) must think I'm a complete scatterbrain at the moment.... I know I'm not functioning at 100%!


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## AKettleofFish (Apr 5, 2018)

Oh, forgot to add, she checked my vitamin D and it was super low too. Is that at all related or just because I live in a cold area and haven't had exposed skin to the sunlight in months!


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## joplin1975 (Jul 21, 2011)

Definitely ask for a thyroid ultrasound!

Vit D usually runs low with people with thyroid issues. But with your antibody results, you definitely have some kind of autoimmune thing going on.


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## AKettleofFish (Apr 5, 2018)

Thanks Joplin,

I'll be sure to ask for an ultrasound!

I was just looking at my records and it looks like my doctor tested my TSH last January but did not test T4 or anything else, so probably not too useful.

My TSH on 1/3/17 was 1.469 (0.25-4.94)

Would that be considered normal or was I already showing signs of being hypo? I know it's within the reference range so it was probably normal....

Thank you again, this looks like a great community with a wealth of information!


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## Lovlkn (Dec 20, 2009)

On top of "baby brain" you also are experiencing "hypothyroid brain". It should improve once your thyroid levels go up.

1.469 for TSH is not alarming and fairly "normal" some say a TSH of 1 is optimal.

My perspective - birth or miscarriage throws the body into a tizzy - anything is possible and alot of people do develop thyroid issues post partum

Be sure to get paper copies of all lab work run - make a log and keep track of your symptoms - this is the best way to dial in thyroid hormone replacement.


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## AKettleofFish (Apr 5, 2018)

Hi Lovlkn

Pregnancy really does do a number on the body, that's for sure! So worth it though....

My Dad is a scientist too so when I was speaking to him I was not surprised to find he had an excel spreadsheet with all his numbers dating back to 1985! I've already started my own. Great suggestion to put symptoms on it too. I hadn't thought of that. Thank you for the advice!


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## jenny v (May 6, 2012)

One thing to do on your spreadsheet once you start feeling better is to highlight the results when you were feeling great. It sounds weird but it helps me to remember what my Frees looked like when I feel good, so I have something to aim for.


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## AKettleofFish (Apr 5, 2018)

I had a thyroid ultrasound performed today and just got the results. My doctor said they are consistent with Hashimoto's and no further action needs to be done. Anything I should be aware of?

Findings:

Thyroid isthmus measures 0.7 cm

Right lobe measures 5.3 x 2.3 x 1.9

Left lobe measures 5.1 x 2.3 x 2.0 cm

Thyroid parenchyma is diffusely heterogeneous and mildly hypervascular

Right mid lobe solid 4x4 x3mm hyperechoic rounded nodule without perfusion

No left-sided nodules

Inferior to the isthmus there are 2 lymph nodes measuring 7 x 4 and 6 x 6mm

Impression:


Enlarged, heterogeneous mildly hypervascular thyroid
4 mm hyperechoic nodule right lobe TR3

TR3- mildly suspicious

>1.5 cm follow up

>2.5 cm FNA


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## joplin1975 (Jul 21, 2011)

No, that's a pretty standard Hashi's u/s.


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## AKettleofFish (Apr 5, 2018)

Great, thanks!


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## Hopeful (Apr 10, 2018)

At the bottom it says "TR3 slightly suspicious" and then >2.5 cm FNA, meaning that nodules greater than (>) 2.5 cm need an FNA. Did your doctor mention this to you?

At the bottom:

TR3- mildly suspicious

>1.5 cm follow up

>2.5 cm FNA

Your 4 x 4 x 3 mm hypoechoic nodule converts to 0.4 cm x 0.4 cm x 0.3 cm. In comparison to one of mine that was also hypoechoic and received an FNA. My measurements were: 0.6 x 0.5 x 0.4 cm. If I am reading that above "key" correctly, they only want to FNA if a nodule is >2.5 cm? Hmmm. If they don't want to FNA it now, if this was my doctor, she'd recommend ultrasounding again in 6 months, unless you get new symptoms, like a tightening in your thyroid region or you feel like you have a restricted airway. Also, if your thyroid antibodies go up a lot, this can indicate that your nodules and thyroid have also grown (from my personal experience).


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## Hopeful (Apr 10, 2018)

I figured out how to edit my above post!


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## joplin1975 (Jul 21, 2011)

1cm is the criteria for biopsy per the American Thyroid Association. ????


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## AKettleofFish (Apr 5, 2018)

Went back to see how my starting dose of 50mcg was working and my TSH is still very high. My doctor didn't test FT4 this time but I'm sure it was still low. I also got some other testing done. If I'm understanding correctly, while all of these are in range it is probably a good idea to supplement a bit with the iron and B12. My multi vitamin has 6mcg B12 and 18mcg iron. Is that enough? Is there anything else I should get tested

My synthroid dose has been upped to 75 mcg and I'll see the endo that is in the same office as my primary next week.

5/2/18

TSH: 62.392 (0.350-4.940)

Vit B12: 422 (213-816)

Folate: 11.0 (>7.0)

Ferritin: 36.57 (16.00-204.00)

Iron+ TIBC+ Ferritin 91.0 (50.0-170.0)


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## Lovlkn (Dec 20, 2009)

> My multi vitamin has 6mcg B12 and 18mcg iron. Is that enough?


Nope - not enough. You might consider Floradix which is a liquid iron supplement that's easier on the digestive tract. You will need some B-12 which is usually taken sublingual ( under tongue) as well as Vitamin D - which I believe you said you were low on. I need to take 5K IU of D daily to maintain decent levels and am outside in the sun all the time.

Be sure to take your iron supplements at least 4 hours away from your synthroid


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## AKettleofFish (Apr 5, 2018)

Thank you again for your help!

How much B-12 and iron would be appropriate? My doctor prescribed 50,000 IU vitamin D, taken once a week for 3 months. Then recheck my levels and 4K IU to maintain if it is back in a normal range after the 3 months. I don't think I said how low it was but it was 12 (>30)! That's what I get for moving from California to New England!


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## Lovlkn (Dec 20, 2009)

AKettleofFish said:


> Thank you again for your help!
> 
> How much B-12 and iron would be appropriate? My doctor prescribed 50,000 IU vitamin D, taken once a week for 3 months. Then recheck my levels and 4K IU to maintain if it is back in a normal range after the 3 months. I don't think I said how low it was but it was 12 (>30)! That's what I get for moving from California to New England!


Not sure about amt of B-12 to add - the key is be consistent then retest in several weeks. I've purchased many B-12 supplements - you need to take it under your tongue. I prefer the pills to the liquid as I don;t want to stain my teeth red.

The course of D is the prescribed course of action to quickly raise your levels. It take me 5K IU dailt to maintain decent levels and I take everyday - even if I am on vaca and in the sun.


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## AKettleofFish (Apr 5, 2018)

Just got another set of labs and got back from the endo. Labs are looking better but I'm so frustrated as the endo won't increase my dose until we do another set of labs in 3 more weeks. She doesn't feel that 6 weeks since my dose adjustment is long enough. From what I've read you typically reach a steady state in under 4 weeks!

Should I be concerned that thr T4 is almost in range yet the TSH is still high? I asked thr endo to test free T3 next time and she seemed to agree but said it "isn't useful". They also won't retest my vitamin B or ferritin again as they were "normal" Sigh! I have increased the amount I take but don't want to take too much.

At least it looks like I'm getting on the right track. Just wish I felt better. It's been frustratingly slow but I'm sure everyone feels that way.

To summarize:
11/1/17
TSH: 0.91 (0.27-4.20)

4/3/18
Prescribed 50 mcg synthroid
TSH 73.309 (0.350-4.940)
Free T4 0.40 (0.70-1.48)
T3 total serium 49 (71-180)
TPOab >600 (0-34)

Vitamin D 12

5/2/18
Dose changed to 75 mcg

TSH: 62.392 (0.350-4.940)
Vit B12: 422 (213-816)
Folate: 11.0 (>7.0)
Ferritin: 36.57 (16.00-204.00)
Iron+ TIBC+ Ferritin 91.0 (50.0-170.0)

5/15/18
Dose changed to 100 mcg synthroid

6/25/18
Dose unchanged

TSH 6,311 (0.350-4.940)
Free T4 1.01 (0.70-1.48)
Vitamin D 84

Retest in 3 weeks


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## joplin1975 (Jul 21, 2011)

It takes a LONG time for TSH to change (check out my signature). It can lag behind what your "actual" free values look like by weeks.

Some times when you undergo lots of hormonal changes, it is better to wait a couple more weeks. Its easier to fix hypo than it is to fix hyper. I agree that you'll still likely need a dosage increase, but you are headed in the right direction.


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## AKettleofFish (Apr 5, 2018)

Thank you, I'll be more patient then.


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## Lovlkn (Dec 20, 2009)

You really must insist that your doctor run both FT- 4 and FT- 3 at every lab.

TSH can lag up to 6 weeks.

I'm not aure why your doc initially prescribed -having only run a TSH which actually was quite normal at ,91


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## AKettleofFish (Apr 5, 2018)

Lovlkn said:


> You really must insist that your doctor run both FT- 4 and FT- 3 at every lab.
> 
> TSH can lag up to 6 weeks.
> 
> I'm not aure why your doc initially prescribed -having only run a TSH which actually was quite normal at ,91


Sorry if what I wrote was confusing. My doctor started me on synthroid on 4/3/18 when my TSH was 73 and FT4 was only 0.40. I'm now seeing an endo at the same office as my doctor and she runs TSH and FT4 each time, although she reluctantly agreed to test FT3 next time (although I'm not 100% sure she actually will). She's also the one who won't up my dose until I get another blood test in 3 more weeks, so a total of 9 weeks since my last dose adjustment.


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## Lovlkn (Dec 20, 2009)

6 weeks is more customary for lab's after making a change - although even at 4 you can see the trend of where you are going.


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## AKettleofFish (Apr 5, 2018)

Looks like the patience was warranted. My numbers did improve slightly by waiting 3 more weeks. She did run free T3 this time although I can see on my orders that she will not run it next time. Looks like the T3 is lagging a bit. T4 is now within 50% of range while T3 is still only at 25%. I still feel really crummy. It's truly amazing how much of an effect the thyroid has on so many different aspects of the body from memory to cholesterol! My dose has been increased to 112 mcg.

7/16/18

TSH 3.383 (0.350-4.940)
Free T4 1.12 (0.70-1.48)

Free T3 2.6 (2.0-4.4)

Dose changed to 112 mcg


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## AKettleofFish (Apr 5, 2018)

I got more lab results and the numbers are looking better. I always drink coffee 10 minutes after my synthroid but always wait 2 hours before eating breakfast. I know coffee affects the absorption, but I figured as long as I am consistent it should be ok. I am however surprised how much synthroid I need to be on. I am now on 137 mcg and I'm 130 lbs.

Looking at my numbers it seams my FT3 is always less than my FT4, is there anything I can do to improve that?

My most recent numbers show my FT4 smack in the middle at 66 percent of range while my FT3 still isn't at 50%.

I took iron and B12 for 3 months and it actually looked like my numbers got worse? Should I be concerned with that?

I am going to a new endo who is letting me do most of the decisions. He is very hands off and will listen to my recommendations. Is there anything I should ask him about in regards to my new results? Anything I should change? Should I stick with the 137 mcg?

Thank you for all the advice so far on this journey!

Below are my full results.... with the thyroid results in reverse chronological order followed by the vitamin analysis

*7/30/14*

TSH: 2.59 (0.4-4.5) ulU/ml

*10/2/15*

TSH 1.48 (0.4 4.5) uIU/mL

*1/3/17 *

TSH: 1.469 (0.25-4.94) uIU/mL

*11/1/17*
TSH: 0.91 (0.27-4.20) uIU/mL

*4/3/18*
TSH 73.309 (0.350-4.940) uIU/mL
FT4 0.40 (0.70-1.48) uIU/mL
T3 total serium 49 (71-180)
TPOab >600 (0-34)

*4/3/18 *

Prescribed 50 mcg synthroid

*5/2/18*
TSH: 62.392 (0.350-4.940) uIU/mL

*5/3/18 *

Dose changed to 75 mcg Synthorid

*5/15/18*
Dose changed to 100 mcg synthroid

*6/25/18 *
TSH 6.311 (0.350-4.940) uIU/mL
Free T4 1.01 (0.70-1.48) uIU/mL

*7/16/18*

TSH 3.383 (0.350-4.940) uIU/mL

FT4 1.12 (0.70-1.48) ng/ml

FT3 .6 uIU/mL (2.0-4.4)) ng/ml

*7/19/18 *

Dose changed to 112 mcg synthroid

*8/21/18*

TSH 4.592 (0.350-4.940) uIU/mL
FT4 1.08 (0.70-1.48) ng/ml

FT3 2.6 (2.0-4.4)) ng/ml

*8/27/18*

Dose changed to 137 mcg synthroid

*10/30/18*

TSH 0.2 (0.30 - 4.50) uIU/mL
FT4 1.2 (0.6 - 1.5) ng/ml

FT3 3.2 (2.4 - 4.2)) ng/ml

*4/3/18*

Vitamin D 12 ng/ml ( >30 ng/ml)

*6/25/18*

Vitamin D 84 ( >30 ng/ml)

*5/2/18*

Vit B12: 422 (213-816)
Folate: 11.0 (>7.0)
Ferritin: 36.57 (16.00-204.00)
Iron+ TIBC+ Ferritin 91.0 (50.0-170.0)

*10/30/18*

Iron,Serum/Plasma 73 ug/dL (50 - 170) ug/dL

Transferrin 283 (175 - 340)

TIBC 358 ug/dL (250 - 430)

Iron Saturation % 20 % (15 - 50 %)

Ferritin 51 (30 - 202)

Unsaturated Iron Binding Capacity 285 (110 - 370)

Vitamin B12 366 (300-2,000)


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## Lovlkn (Dec 20, 2009)

> Looking at my numbers it seams my FT3 is always less than my FT4, is there anything I can do to improve that?


I would suggest asking for 5mcg of Lilothyroinine ( Cytomel) and split that dose - morning and 6 hours later.

Consistency is key - if you drink coffee then drink coffee.

I think part of your issue is continued low ferritin, low D and low B-12. There seems to be a connection to low thyroid and how one adjusts to hormone replacement. If you are pushing 1/2-3/4 of range for each it will help with the addition of Lilothyroinine( Cytomel). Not sure how it works just being levothyroxine but I have noticed people posting difficulty adding Cytomel who are low in all 3 of what I listed.

Most important is "how you feel" . I for one do not feel right if my FT-4 and FT-3 are not pushing 3/4 of range.


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