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caseymay 03-13-2009 04:14 AM

Am I stupid? secondary hypothyroidism
Free Thyroxine 14.5 pMol/L (10.0 -28.2) [B]24.7%[/B]
Free Triiodothyronone 6.2 pMol/L (4.26 - 8.1) [B]50%[/B]

Does this look like a healthy thyroid? I think not being as my ft4 is just below 25%. I think I have secondary hypo as I also have a pit tumour. anitbodies negative. In secondary hypo, the FT4 is low and the TSH is low. My FT4 is within range but not optimal. My TSH is normal at 0.94.

my hair is falling out (but that might be due to the PCOS).
I have carpal tunnel symptoms - my hand surgeon has ruled out anything functional and suspects a thyroid problem.
My BBT in the mornings orally is always 36.2 degrees celsius.

my endo says my results are fine. I am going back to in 2 weeks to battle with him again.

Am I being stupid - should I let this secondary hypo thing go?

this has been going on for so long and I feel like giving up on a diagnosis. :confused:

mkgb 03-13-2009 10:11 AM

Re: Am I stupid? secondary hypothyroidism
You need to check a couple of things. Your Ft3 levels are high in comparison to your Ft4 levels this could be a sign on adrenal dysfunction. You need an ACTH and cortisol fasting 8 am blood serum check.

Given you symptoms.. especially the hair loss you need to get your ferritin, B12, and vit D levels checked. You maybe suffering from nutritional malabsorption. MANY hypothyroid patients suffer from this.

Depending on the results of these tests you may be able to correct things by adding some vitamins to your daily regime. Or you may have to supplement your adrenal output and increase your thyroid supplementation.


caseymay 03-13-2009 02:31 PM

Re: Am I stupid? secondary hypothyroidism
thank you. you have given me renewed enthusiasm to fight this thing - i will ask for the tests you mentioned.

secondary hypo is difficult as most thyroid people don't understand the pituitary dynamics and most pituitary people don't understand the thyroid dynamics. I would love to find someone who had secondary hypo!!!!!

thankyou once again - you have no idea how positive it is for me to have had a response. best wishes.

mkgb 03-16-2009 06:55 AM

Re: Am I stupid? secondary hypothyroidism
Well. My TSH has never exceeded 2.077 and I was hypothyroid. ;) Now I am on 112 mcgs of T4 and my TSH is 0.17 and my FTs are 40% in range. I am still considered hypoT by my MD given symptoms. It is never easy to treat a thyroid condition when the MDs are being trained and told that the TSH is the be all measurement of thyroid health. Well that is not always true and there are always exceptions to the rule. It always helps to know that someone is listening.


caseymay 03-17-2009 06:48 AM

Re: Am I stupid? secondary hypothyroidism
sounds like you have a good MD - fantastic to be treated for the symptoms rather than a set of labs. So your FT labs are in the 40% range? Am I correct in thinking that the FT's should be in synch with each other, ie: if FT4 is 40%, then the FT3 should be around the same?

Do you have secondary hypo being as your TSH is so low?? or was your dx based on your FT4? hope you don't mind me asking. Do you feel well with your levels at the moment??

I have my appt on Monday. I need to plan on how to make myself heard.


mkgb 03-18-2009 08:23 AM

Re: Am I stupid? secondary hypothyroidism
I am secondary hypoT and Hashimoto's thyroiditis as far as thyroid issues are labeled. The women in my family even with thyroids removed rarely exceed a TSH of 3. It is quite interesting to see the genetic similarities.

The actual thyroid hormone levels... which the FT3 and FT4 tests measure with an accuracy of 2.5-5% versus the T3 and T4 testing which has a 20% deviation.... should be balanced if conversion of T4 to T3 is adequate and efficient. Given the standard deviation of the various tests used to measure thyroid hormones you want to use the FT tests and one is considered balanced if their thyroid hormones are with in 10% of each other. Optimal case your Ft3 and Ft4 levels would be X% and X%, but many have some variance.

At 40% I feel more human than I did at 5%. However all my symptoms are not gone yet. I am better, but not completely well. Given my last Ft3 of 45% and Ft4 of 40% my MD boosted me 12.5 mcgs in T4. I am now at 112.5 mcgs and will go back in for additional FT3 and Ft4 testing after 6 weeks at 112.5 mcgs of T4. IF my FTs are still below 60% of range I will get a boost to 125 mcgs despite whatever pitiful level my TSH is at...

My diagnosis was based on my low normal Ft levels AND my exceptionally high thyroid antibody levels and the MDs knowledge that NORMAL thyroid function patients have Ft levels 50-80% of normal range. My MD is not a TSH watcher, PRAISE ALL THE POWERS THAT BE!


caseymay 03-18-2009 09:02 AM

Re: Am I stupid? secondary hypothyroidism
praise all the powers that be indeed!! thank you for sharing that info with me.

my hand surgeon seemed more clued up than my endo - it was he who said maybe my levels were not optimum and perhaps I need some thyroxine.

I will suggest this when I go on Monday.

Incidentally - thyroxine: what are the names of the drugs that contain thyroxine? I hear names of thyroid drugs going around but am unsure what is what. also, if they agree to trial me on thyroxine, what dose can I expect then to start me on? (I'm asking so that I am FULL of knowledge when I go on Monday:dizzy:)

also, I am certain you have PCOS too - am I correct?? If so, how do you know which symptoms are PCOS and which are thyroid?? My endo said my hairloss is probably due to PCOS (i have had pCOS for years and have metformin), but I know it can be thyroid too. The only symptom that I know definitely is not PCOS is the peripheral neuropathies in my hands /arms.


mkgb 03-18-2009 09:28 AM

Re: Am I stupid? secondary hypothyroidism
Well what is responsible for what? Ahhh! That is the absolute question we all want answered grass hopper. ;)

I have Hashimoto's/secondary hypothyroidism.
I have hypoadrenalism.
I have PCOS.
I have Insulin resistance.
I have reactive hypoglycemia.
I have allergies, and more but those above are the endocrine biggies!

I had an OUT HOUSE load of symptoms.. what was responsible for what? Well I went stepwise through treatment and diagnosis.

1) First found and treated was the Hashimoto's/hypothyroidism as a result of my symptoms and extremely high antibodies. This started me on T4 supplementation (Brand names: Levoxyl, Synthroid, Levothyroxine, and Tirosint... there are more and there are probably brands specific ones in your country as well). I was started on 50 mcg of Synthroid. This helped with some symptoms but not all. Pushing the thyroid medication was warranted by my Ft4 level, but over conversion of T4 to T3 drove me hyperthyroid by T3 toxicosis. Symptoms fixed: Thyroid eye disease, migraines, some fatigue, constipation

2) This pointed that I had another issue to address.. hypoadrenalism. So we did the tests: Saliva 24 hour cortisol, ACTH, ACTH stimulation test, DHEA, Cortisol fasting 8 am blood serum, estrogen, testosterone, vit D, B12, ferritin. My ferritin B12, K, and D were all low. This and the cortisol levels being in the out house pointed to hypoadrenalism. I then had testing for the antibodies that kill off the adrenals (ACA) and found out my adrenals just died from too long hypoT. But my TSH was normal! ;) *snort* So I was put on 20 mg of hydrocortisone daily in addition to 75 mcgs of Synthroid. Things were beginning to feel better, but things were still not right. I researched the ACTH stim sex hormone results and cross matched my symptoms and the HIGH DHEA levels and went back to my MD with my MD SIL's list of tests need to confirm/refute PCOS and IR.. Symptoms addressed: electrolyte imbalance, heart issues, fatigue, hypersomnia

3) So I was tested for PCOS/IR/hypoglycemia. This was proven by my blood results and uterine ultrasound. I had all three.. WHEEE! I love the pre-existing conditions line on medical information forms. The receptionist look at you funny when you ask for another sheet because you ran out of room... Treatment Metformin XR. I stepwise progressed to 1500 mg.
Symptoms addressed: weight gain in the middle, PMS/PMDD symptoms, irregular periods, mood swings, and many other pesky female things. A large portion of remaining fatigue went away as well as energy was increased upon treatment.

Now my thyroid hormone levels while suboptimal and low for me are balanced. My blood sugar/insulin issues are balancing out with the Metformin XR. My hypoadrenalism is in check. So symptoms left are the skin issues which I keep in check with my Dermie's help and special creams, weight is stagnant, joint and muscle issues, cold feeling, and periodic fatigue. I am working on getting rid of them all, but it does take time. Now it is a matter of getting my thyroid hormones optimal and seeing where things go from there. So all in all I can not blame one thing. They are interlinked, but treating them systematically and then in tandem has been the best approach for me. OH it has taken over a year to get all this diagnosed and treatment started.


caseymay 03-19-2009 08:31 AM

Re: Am I stupid? secondary hypothyroidism
thanks for your story so far. It is very good to read your history and i am so pleased you have a good md. I have been trying to work out why i have carpal tunnel since september 2008 and although my hand surgeon thinks i ought to trial thyroxine, my endo won't agree.

so wish me luck for monday when I go to battle with the endo!!!


mkgb 03-21-2009 09:38 PM

Re: Am I stupid? secondary hypothyroidism

An Endo is not the only MD that can write a script for Synthroid. ANY MD can. I have NO scripts from any ENdo. All my Endos just want to humm and huff and then pass me off on the other specialists. My latest told me to go back to my IM and check back in 6 months, he couldn't add anyhthing to my care... SO why come back and pay him? Humm.. not gonna happen. Get your hand surgeon to write the ENdo a note and give you a trial of synthroid.


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