Primary turns into Secondary with Medication? - Thyroid UK

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Primary turns into Secondary with Medication?

kk84
kk84
β€’23 Replies

Hi everyone, I am new here and overwhelmed with confusion! Has anyone ever seen someone start out as a classic Primary Hypothyroid and then once medicated they develop Secondary Hypo? My new Dr seems stumped but leaning towards that I have Secondary due to my blood work that I've been having. Also although I am feeling better I am STILL having symptoms (tired, drunk brain, low digestion, low temps, weight gain that wont budge down)

Blood Work is as follows...

No Meds 08/17:

TSH- 5.25 (.45-4.5)

FT4- 1.07 (0.82-1.77)

FT3- 2.5 (2.0-4.4)

RT3- 16.0 (9.2-24.1)

FSH- 3.0 (Luteal phase 1.7 - 7.7)

LH- 6.7 (Luteal phase 1.0 - 11.4)

2 Grains NDT:

11/17

TSH- 0.014 (.45-4.5)

FT4- 1.09 (0.82-1.77)

FT3- 3.4 (2.0-4.4)

RT3- none

50mg Synthroid 02/18 (NIGHTMARE Fertility Endo who refused to test anything but TSH and told me I would never get pregnant with a TSH of 0.014 )

TSH: 3.51

New Dr

1 grain NDT 4/18:

TSH- 2.21 (.45-4.5)

FT4- 0.81 (0.82-1.77)

FT3- 2.6 (2.0-4.4)

RT3- None

1.5 grains NDT 7/18:

TSH- 0.078 (.45-4.5)

FT4- 1.00 (0.82-1.77)

FT3- 2.9 (2.0-4.4)

RT3- None

My new Dr upped my Nature Throid to 1.75 and I am having a slew of Blood Work (including RT3) to confirm his suspitions that I may have Secondary Hypothyroid (I also almost always have high Prolactin and sometimes High Iron). From everything I read its not clear that if Medication can induce Secondary and I am so confused! If I am forgetting any important blood work please let me know, I have them all sitting here in front of me! Thank you for any and all advice, I truly appreciate it.

Love,

Kristina

23 Replies
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SeasideSusie
SeasideSusieAdministrator

kk84

I'm curious as to what is making your doctor say you may now have secondary hypothyroidism?

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kk84
kk84
in reply to SeasideSusie

He is saying that while being medicated if my TSH is that that low, my FT4 & FT3 should be higher (showing signs of hyperthyroid) as well as that I have high prolactin levels which is controlled by the pituitary gland.

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SeasideSusie
SeasideSusieAdministrator
in reply to kk84

OK, well I don't know anything about prolactin levels so can't comment on that. But when taking NDT it's normal for TSH to be low or even suppressed, and for FT4 to be lower in the range. You can only go by FT3 when on NDT and that should stay in range. The low TSH and FT4 don't matter, that's just what NDT normally does to those levels.

Where secondary hypothyroidism is concerned, that would very likely have shown in your results before diagnosis, and then it would be where the TSH is low, normal or very slightly elevated, and FT4 is low.

I'm thinking that maybe your doctor, even though he is prescribing NDT, doesn't actually know what test results look like when taking it. They aren't interpreted the same as when taking Levo.

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kk84
kk84
in reply to SeasideSusie

I agree with you about maybe he doesn't know exactly how to read the labs properly but he is a very open minded Dr and agreed with me that we need to look more at T3. I think a big reason that maybe he jumped to the secondary diagnosis is because I was in a horrific car accident 11 years ago. He kept asking me if I was sure I had no brain injury. 🀷

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SlowDragon
SlowDragonAdministrator
in reply to kk84

But did you have whiplash?

Whiplash can affect Thyroid function

wellnessresources.com/news/...

helpmychronicpain.com/blog/...

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kk84
kk84
in reply to SlowDragon

They were pretty confident that it showed nothing in scans and if I had anything it was a very mild concussion. I would not know about whiplash as I was in an induced coma for 2 months.

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SeasideSusie
SeasideSusieAdministrator
in reply to kk84

kk84

Were any investigations done at the time of your accident? Scans to see if there was a brain injury? Was your pituitary affected? If not investigated back then, maybe they should be now if your doctor is suspecting something like this. And as SlowDragon has said, whiplash can cause problems.

I don't know if a car accident 11 years ago, which may possibly have caused brain/pituitary/whiplash damage, would result in your thyroid problem manifesting 10 years later.

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kk84
kk84
in reply to SeasideSusie

They did numerous scans and they showed nothing but a possible mildn concussion. I was placed in a coma for 2 months so I don't know how I was feeling. My husband says that they weren't concerned so much about my brain (minus the initial scans) because they didn't think I was going to survive it. When they started waking me up they counseled NY husband and family that no one knows what's going to happen when I wake up.

That is why I'm so confused about the possible diagnosis. I have been fighting for at least 8 years to get diagnosed but I was suppressing my labs with Supplements. And Everytime I would go to the Dr about how terrible I felt (even last year) they would tell me that "you were in a horrible accident and your getting older, you need to accept that this is the new you" 🀷🀷🀷

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SlowDragon
SlowDragonAdministrator

Have you had vitamin D, folate, ferritin and B12 tested?

If so add results and ranges

These are very often too low, especially if you have Hashimoto's diagnosed by high thyroid antibodies

Have you had TPO and TG thyroid antibodies tested?

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

High prolactin could be symptom that you are still inadequately treated and remain hypothyroid

pituitarysociety.org/patien...

Replacement thyroid hormones - on Levothyroxine only should be high enough dose to bring FT4 towards top of range and FT3 at least half way in range

On NDT FT4 can be slightly lower, but FT3 must be adequate, at least half way in range, but likely higher

On NDT or T3 the TSH is invariably suppressed and does not indicate over medication provided FT3 and FT4 are within range

The only result that looked that FT3 and FT4 almost ok was on 2 grains

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kk84
kk84
in reply to SlowDragon

Vitamin B12: 384 (211-946)

Folate: 19.4 ( >3.0)

Feritin: 32 (15-150)

Vitamin D 25 Hydroxy total: 42

Thyroglobulin Antibody: <1 (0.9-0.9)

TPO: 10 (0-34)

Reply
SlowDragon
SlowDragonAdministrator
in reply to kk84

B12 is likely too low

Folate possibly (pity they don't put top of range )

Supplementing a good vitamin B complex may be of benefit. One with folate in, not folic acid

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Vitamin D - are you in the USA ? If so the units are ng/ml (Uk is nmol)

Uk we say 100 nmol ideal - Which is 40ng/ml

endmemo.com/medical/unitcon...

Ferritin is low. Aiming for half way in range. Eating liver once a week should help improve

Do you suffer heavy periods? This can lower your iron and ferritin. Heavy periods are classic sign of being hypothyroid as well

A low TSH due to replacement thyroid hormones is not the same as low TSH due to overactive thyroid

With thyroid hormone replacement the most important is FT3 and FT4

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kk84
kk84
in reply to SlowDragon

I am in the Us and I was taking a prenatal.

I actually usually have High iron levels! At the time of the be my results were:

212 ( 27-159)

Also I don't know if it makes a difference for any if this but I was also diagnosed with MTHFR

Heterozygous A1298C

Reply
jimh111

Your initial TSH was not that high for your lowish normal fT3, fT4. If you keep your TSH low for many months it can down-regulate your axis meaning your TSH response is lower. This is why it's a good idea to try and recover without your TSH going very low.

Your last result TSH- 0.078 (.45-4.5), FT4- 1.00 (0.82-1.77), FT3- 2.9 (2.0-4.4) has quite a low fT3 for someone on NDT. How do you split your NDT dose each day? How long did you leave between the last NDT dose and having the blood taken?

To answer your question you can progress to 'secondary hypothyroidism' if you take a lot of hormone and push your TSH down for some time. I wouldn't really call it secondary hypothyrodism, it is a down-regulated axis and not as severe as secondary hypothyroidism.

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kk84
kk84
in reply to jimh111

Does that mean something that my initial TSH wasn't that high considering how lowish/normal my ft3 and ft4 we're? Does that mean I wasn't really Hypothyroid? I was able to keep my TSH at a slightly normal TSH with Supplements alone but never felt any benefit. How do you go about healing without letting your TSH go low?

I actually just started reading about splitting my dose, but I have not started doing that yet. I take both 1grain and 3/4grain between 3and6 am and go back to sleep. I never take my pills before blood work because I thought it would give you false reading. So maybe 28 hours I went.

Maybe my Dr jumped the gun on the Secondary diagnosis, I think he was concerned that maybe I had brain trauma in my horrific car accident 11 years ago.

So where should I go from here? I don't want to be over medicated and do damage but I still feel terrible. I have also been trying to become pregnant for over 6 years and was told by the expensive fertility Dr that I will never get pregnant with a TSH that low (0.014).

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greygoose
greygoose
in reply to kk84

You are hypo as soon as your TSH hits 3. So, no, that's not what it meant.

If your doctor suspects you have Secondary hypo, is he going to test the other pituitary hormones? Or give you a scan? There are ways of finding out. :)

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jimh111
jimh111
in reply to kk84

Usually as the thyroid starts to fail TSH rises as fT4 falls a little whilst fT3 levels are maintained. As fT4 fails a little more and goes below its lower limit TSH goes higher (above 10) but fT3 stays OK until finally TSH is very high and fT4 and fT3 are both low. During this scenario there is an increased rate of conversion of T4 to T3 stimulated by the high TSH which keeps the patient euthyroid. This is why the guidelines say not to treat until TSH goes above 10 or fT4 falls below its lower limit. This makes sense for this group of patients. These patients can often be fine with much higher TSH levels but they usually become hypothyroid as the thyroid damage progresses.

However, there are other patients such as yourself that do not fall into the above group and are denied treatment. Your original TSH (5.25) was a little high and your fT4 drifting down but your fT3 has not been maintained around mid-interval. Unfortunately doctors tend to regard TSH, fT3 and fT4 as independant variables when in fact they are inter-related and work together. You were quite likely hypothyroid at the time. Unfortunately prescribing L-T4 (levothyroxine) will increase the fT4 but lower TSH and fT3 leading to little improvement. Taking some T3 in the form of liothyronine or NDT should help.

It does look like you have some secondary hypothyroidism but not the usual form you see in the text books which is severe with a TSH that is very low or near zero. Doctors tend to assume central hypothyroidism is total or non-existant they don't consider minor forms. An abnormally TSH can be caused by being thyrotoxic for some time (it 'down-regulates the axis', by depresssoon or starvation diets, by trauma or by a pituitary growth). Given you had a serious accident its possible this caused minor damage to your pituitary and so your doctor should check this out and measure some other pituitary hormones.

The blood tests you did whilst on NDT aren't much use as the gap between the last dose and taking the blood is too long, the fT3 figures will be too low. (you don't need to measure rT3 it's a waste of money). I would take your NDT at breakfast and bedtime and have the blood taken half way between two doses, this will give the most accurate results.

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kk84
kk84
in reply to jimh111

Well on top of all of my trauma I was also placed in a starvation diet by my Dr and was only eating 500 calories a day or less for a little over a year!!!

I'm surprised to hear about the timing of the meds to blood work, as all I read is to not take it to make sure you don't have a false reading! Wouldn't it bed bad to take 2 full doses in one day? Should I maybe just take my dose at like midnight or 1 when my blood work is at 7:45am?

What is this dowb regulated axis? Is it the hypothalamus-pituitary-thyroid axis? Is it bad to have it down regulated? If so how do I prevent it?

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Jnetti
Jnetti
in reply to kk84

"What is this down regulated axis? Is it the axis? Is it bad to have it down regulated? If so how do I prevent it?"

I think a down-regulated axis does mean hypothalamus-pituitary-thyroid, which together regulate our metabolism. So in simple terms, downregulating it is like setting a thermostat too low. Which could have been done by the starvation diet, your accident or perhaps a wrong does of thyroid hormone for a long time.

I'm pretty new to this thyroid business and may be wrong in some of the above, but think it's more or less correct. Not sure about what to do about it, but the doctor does seem to be sympathetic and trying to sort you out, which is good

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kk84
kk84
in reply to Jnetti

Yeah it's all so confusing! I felt like I really knew it and then I come in here and it's all more for me to research!

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silverfox7

On NDT it's recommended that you test 12 hours after previous dose. Many of us also find that we are ok taking all the dose together, it's an individual thing based on results and how you feel. The initial split is to get you used to taking T3 so easier on the split dose but I kept forgetting my second dose so tried all at once and it worked for me.

Not many doctors realise that results are read differently. I was told TSH should be suppressed, FT4 can drop down its range but FT3should be high in the range but never over.

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kk84
kk84
in reply to silverfox7

I'm surprised to hear you say the timing if meds to noood work also! All I've read is to make sure you don't take them and fast, as taking them will give a false High reading. I have tried so hard to educate and prepare myself for these Drs and now I'm shocked haha! So would it be ok to take it at 12an or 1am before the 7:45am blood work?

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kk84

Also, has anyone ever heard that WHILE being medicated with NDT that having such a low TSH (which I know is not important) it would make it impossible to become pregnant?

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silverfox7

I had my children before I had a thyroid problem so can't speak from experience but TSH is almost zero on NDT, mines 0.01, so I would think more important that you are on enough NDT so that FT3 is high in the range. But can't remember anyone ever commenting on problems getting pregnant, FT3 is considered the only accurate measurement on NDT. Has anyone told you other wise? As to your other point of taking your medication at midnight I would think a little earlier would be better. It might be a case of try it and see then if stupidly high just say you forgot about the test and took your meds. May be if no one answers that a new thread might be a good idea. The earliest I can get a blood test is 8.30 am though often nearer 9.

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