Aa
Aa
A
A
A
Close
Avatar universal

Low TSH. Low FT3. Low FT4 after 2 T4 increases. Pituitary or antibodies?

I have Hashimoto's with very high antibodies that have ranged from 800 to >5000. I had lowish TSH all my life before diagnosed, ranging from 0.8 to 1.755. FT4 was normal low and no FT3 tested until diagnosed, at which time both were very low. With T4 and T3 they eventually rose up to over half range, with FT3 closer to the start of the upper quarter, and stayed there for years until the last 6 months. Even after two T4 increases in the last 3 months, my FT4 keeps dropping and my FT3 has remained the exact same level through three every-6-weeks lab tests. TSH is suppressed.

My symptoms are major cognitive issues, which I have never ever had until 3 months ago. I'm worried I have Alzheimer's or something. I don't know if this is what people call brain fog, or if this is something else. I feel like I can't think. I forget things. I can't write sentences correctly anymore. I'm in a daze. Kind of light headed, a little dizzy. I feel like I can't move. Other symptoms: I never had hair loss until 3 months ago. At first it was startling. Then I increased meds and is lessened. It's still going on. Digestive problems. Constipation. Low temperature. Not sweating much. Weight loss (was already in good weight. BMI 21-22). Dry skin. Sudden onset of inability to keep eyes open. I struggle trying to keep them open for hours, then give in and have to nap. I would not say that I am fatigued at all. I had that before I was diagnosed. This is not the same.

Why I am wondering about pituitary problems: I've lead a very active and sports filled life, and I've had a few head bumps. I've had migraines for the last 25 years that involve muscles on my head and neck and lots of throbbing. I just looked at my films from an MRI with contrast in 2014. My pituitary was small then, so I'd be surprised if there is a pit tumor now. One thing that is noted on the MRI images but is not mentioned in the written report is that I have a cavum velum interpositum cyst, which is a normal part of fetal development but is rare in a person over 2 yrs old. About 5% of the population has this of "persistent primitive structure.This type of cyst supposedly causes no problems but can cause headaches. I've had migraines for 25 years. I always attributed them to hormones or a vertebrae that I fractured in my neck that caused muscle and nerve problems. Now I am wondering if this cyst could interfere with my hypothalamus or pituitary gland?

Then there's toxins that I've been exposed to. I recently learned that every winter I have been exposed to mold. This goes along with that every winter I get various types of illnesses. This has been going on for the last 5 winters. My antibodies also go up each winter and they usually go down each summer. This spring I was exposed to chemical fumes. My autoimmune problems retaliated. First, my antibodies that had already risen a lot over the winter then doubled to >5000. My other thyroid labs held steady until my 6 weeks labs showed that FT3 and FT4 were cut in half and were under quarter range. I had a respiratory infection and other illnesses. Then, I had a migraine that lasted for weeks on end with a few breaks here and there and it lasted almost two months (I've had very long migraines before). I blamed this migraine on some dental and jaw issues, but maybe it was also something else. When my FT3 and FT4 dropped, I increased my T4 from 88mcg to 113, and T3 from 15mcg to 20 or 25. My next 6 week labs showed more reduction in my FT3 and FT4, so I increased T4 to 125 mcg. My 6 weeks labs following this increase again showed another reduction in my FT4.

These are my labs at 6-8 week intervals over the last year. The most recent results first. Where there is an asterix is where I had medication increases after seeing the results:

TSH: 0.144, 0.724* (increased T4 to 125 mcg, T3 to 20 sometimes 25), 0.696* (increased T4 to 113 mcg, T3 from 15 to 20), 0.090 (Exposed to chemicals 2 weeks before this result. I took 88 mcg T4 from here on back), 0.009, 0.468, 0.63  
(.4-4.0)

FT4: 0.96, 0.98* (increased T4 to 125 mcg, T3 to 20 sometimes 25), 1.02* (increased T4 to 113 mcg, T3 from 15 to 20), 1.34 (Exposed to chemicals 2 weeks before this result. I took 88 mcg T4 from here on back), 1.41, 1.26, 1.22
(.84-1.50)

FT3: 2.5, 2.5* (increased T4 to 125 mcg, T3 from 20 to sometimes 25)), 2.5* (increased T4 to 113 mcg, T3 from 15 to 20), 4.0 (Exposed to chemicals 2 weeks before this result. I took 88 mcg T4 from here on back), 3.4, 2.7, 2.8  
(2.3-4.2)

TPO: I didn't run TPO this time, >5000* (increased T4 to 125 mcg), >5000* (increased T4 to 113 mcg), >5000 (Exposed to chemicals 2 weeks before this result), 2,845, 1,673

I have had the same primary care physician for the last four years. She is confused by my results and wonders about lowering my meds. Heck no! I'm not confused and I will not lower my meds. I need a T4 increase! Should I increase to from 125 to 133 or 150? I am now taking 20-25 mcg T3. Since my doctor is wondering about a med decrease, I'm thinking I could suggest to her that I reduce my T3 if my T4 is increased, since 20-25 mcg T3 could be driving my TSH down, couldn't it?

Does this sound like secondary hypothyroidism or central hypothyroidism with autoimmunity? I am confused about the difference between secondary and central. Can someone please explain the difference?

Thank you for reading my long question and story, and thank you in advance for responding.
5 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Very good news! The naturopath came through and so did my primary, kind of. The naturopath does not think that this is a pituitary problem and thinks it's a Hashimoto's and high antibodies problem. She said that if I had a pit problem some of my other pit hormones would be low. I have read that it can be just one hormone or several that are deficient if you have a pit problem. She tested my pit hormones a few months ago and they were ok. I had LH and FSH with a different doctor and I'm not sure if I gave her my results. Both of these are low and at menopausal or post menopausal levels. This is interesting because I am perimenopausal, not meno or post. I get a monthly period and have no other peri symptoms. My last period was suddenly late. Maybe this was related to whatever has been going on with my thyroid and autoimmune problems these last few weeks.

The naturopath prescribed an additional 25 mcg T4 and submitted a standing lab order so I can easily test whenever I want. I usually test every 6 weeks when I'm having problems or increase meds but my primary is sometimes slow to submit the lab orders. She was not concerned about my TSH, just like I am not. It's my primary who gets all confused about TSH, in true MD fashion. My natural TSH is normal low and so is my FT3 and FT4, so of course medication will suppress my TSH in order to get my free hormones above mid range.

My primary did not respond to my request for medication. Instead she referred me to an endocrinologist who she said can make that call. She previously said she was inclined to want to reduce my medication. In my email I stated that it was possible that taking 20-25 mcg T3 was helping to suppress my TSH and that I'd consider lowering my T3 if my T4 was increased to 150. No response. In my emails I also requested a referral to an endocrinologist who specializes hypothyroid and hypopituitarism, so she fulfilled the referral request. My primary said she has another patient with labs similar to mine who was referred to endocrinology at a large teaching school. This patient was told to go back to only T4 therapy and that T3 was suppressing her TSH too much. In my case, I was originally not converting T4 into T3 properly, so that was why I started taking it. Adding T3 almost instantly cured the fatigue and sleepiness I had way back then. Up until this past March, I was converting much better or maybe almost normally and I was only taking 10 mcg T3.

I had improvement in some of my symptoms within a few hours of taking more T4, too! I took 25 mcg while at the pharmacy. A few hours later I noticed that my brain was much sharper, I could focus on text and absorb what I was readying, I could stay on task, I was not fighting to keep my eyes open, and the large cloud of fog that had been surrounding my head was gone! I few hours after that I noticed a second huge relief. I had been having vision problems for the last few months. I wear multi focal contacts. I was having problems focusing and with double vision. I had to start wearing reading glasses over my multi focal contacts in order to read on my computer or on my phone. Last night I suddenly realized that I was reading on my computer without reading glasses! I could actually see the text clearly. I tried it out on my phone and I could also read much closer and clearer than before where I needed reading glasses to read on my phone. So far this morning my brain is so much more sharp and clear, able to comprehend what I am reading and able to process thoughts. Less typo's, too. I am also not dragging myself around and struggling to keep my eyes open.

I emailed my primary and told her that the ND prescribed an additional 25. I also told her about all of my improvements since taking the additional 25. The endocrinologist that I was referred to has a 3 year waiting list and is not taking new patients. The receptionist said she might be willing to take on my case, said to have my primary send over my chart notes, and said she's call me next week to let me know either way.
Helpful - 0
1756321 tn?1547095325
Extreme stress and illness may affect TSH. A test to try out is the VCS (Visual Contrast Sensitivity) test. First test is free. I lose weight with high levels of toxic mould but it seems inflammation more commonly causes weight gain.  It sounds like the symptoms you're suffering from are neurotoxic symptoms.


"What can cause a contrast sensitivity deficit?

Many things can affect the ability to perceive contrast.  These include nutritional deficiencies, the consumption of alcohol, drug/medication use, and exposure to endogenous or exogenous neurotoxins and/or biotoxins, including volatile organic compounds (VOCs), venom from animal or insect stings or bites, certain species of mold and the mycotoxins and microbial VOCs they produce, cyanobacteria, dinoflagellates (particularly Pfiesteria and Ciguatera), apicomplexans, parasites, heavy metals like mercury and lead, and the pathogens responsible for Lyme disease and its common co-infections."
Helpful - 0
1756321 tn?1547095325
My house has toxic mould in it. I was bedridden last year and lucky to be alive! I've had symptoms for years but symptoms worsened after scrubbing off the mould from the ceilings, bathroom, windows and a gazillion spores were released. I was also drinking mould (spores grew in my brita jug).

Neurological, respiratory...the symptoms are horrendous. My immune system went crazy and all my autoimmune diseases worsened and I couldn't control my Hashimoto's thyroiditis. My thyroid antibodies rose too from mould.  I have removed both airconditioners (2 cleaners could not get rid of the toxic mould) and have thrown 8 large bins of clothes, kitchen stuff etc covered in black mould.

If you are interested, there is a facebook group Toxic Mould Australia (anyone can join from any country). I had my HLADR/DQ test to show I have the "dreaded" genes so I can't fight off mould. My Hashi's genes are HLADR4 and DQB1*0301.

Except from the study Immunogenetics of Hashimoto's thyroiditis - J Autoimmune Dis. 2005 Mar 11;2(1):1....

"In Asians, HLA class I (A2, B16, B35, B46, B51, B54, C3) and HLA class II (DR2, DR9, DR53, DQ4) genes showed an association with the disease [31, 100, 101, 102, 103, 104, 105].

In Caucasians, HT is associated with HLA class II genes such as DR3, DR4, DR5, DQA1*0301, DQB1*0201 and DQB1*0301 [106, 107, 108, 109, 110, 111, 112, 113, 114, 115, 116, 117, 118, 119, 120] but not with the HLA-DP and HLA class I (HLA-A, HLA-B and HLA-C) genes [113, 114, 121]."

Helpful - 0
Avatar universal
The best test for (free) cortisol is the diurnal saliva cortisol panel of 4 tests at different times of day .  Doctors usually will usually only order a morning serum cortisol (total cortisol) test, which is not nearly as revealing as the free cortisol tests.   I suggested the Reverse T3 to make sure your body is not converting too much T4 to RT3 instead of T3.  If you get the RT3 done you should request a Free T3 from same blood draw.  By the way,  you should always delay your morning dose of thyroid med until after  the blood draw to avoid false high results.  

Regarding your med dosage, note the following conclusion from a recent excellent scientific study.   "Hypothyroid symptom relief was associated with both a T4 dose giving TSH-suppression below the lower reference limit and FT3 elevated further into the upper half of its reference range."  I am going to send you a PM with a source of this info so that you can give a copy to your doctor and push for the needed med increases.  

Your Vitamin D is even higher than necessary.  I'd back off a bit on B12, it only needs to be in the upper part of the range.  Your ferritin needs to be supplemented with a good iron supplement like VitronC.  
Helpful - 0
Avatar universal
First thing to clarify is that hypothyroidism is not just inadequate thyroid hormone.  The correct definition is "insufficient T3 effect in tissue throughout the body due to inadequate supply of, or response to, thyroid hormone."   So it is not only the supply, but the response to it that creates Tissue T3 Effect, which determines a person's thyroid status.   More on this later.  

In trying to assess a person's thyroid status, the most important consideration is an evaluation for symptoms that occur more frequently with hypothyroidism than otherwise.   You have listed a number of symptoms that are frequently caused by hypothyroidism.  

Next are biochemical test results compared to reference ranges shown on the lab report.  Your TSH has been somewhat low to suppressed for all the tests shown. while taking thyroid med.  Doctors erroneously interpret a suppressed TSH while taking thyroid med as being hyperthyroid.  Wrong.  Hypo patients taking thyroid med adequate to relieve hypo symptoms usually find their TSH suppressed.  That indicates hyperthyroidism only if having hyper symptoms due to excessive levels of Free T4 and Free T3, which you do not have.   Your FT4 has been okay at times but is lower than recommended currently.  With one exception your FT3 has always been lower than recommended.    The recommendation is that FT4 and FT3 should be in the upper half of their range and adjusted from there as needed to relieve symptoms.

Along with that, there are other variables that affect the response to thyroid hormone and thus your thyroid status.  If not tested for Reverse T3 and cortisol those should be done.  Also, you need to test for Vitamin D, B12 and ferritin.  If RT3 is too high it interferes with metabolism of FT3.  You want to cortisol to be neither too high nor too low.  D should be at least 50 ng/mL, B12 in the upper end of its range and ferritin should be at least 100.   So these need to be optimal as well.  

With your Hashi's central hypothyroidism is the likely cause for the relatively low TSH results.  Central hypothyroidism is the general term for thyroid hormone deficiency due to a disorder of the pituitary, hypothalamus, or hypothalamic-pituitary portal circulation, resulting in diminished thyroid-stimulating hormone (TSH), thyrotropin-releasing hormone (TRH), or both.    Secondary refers to pituitary caused hypothyroidism.  

For migraines have you ever heard about chocolate as well as cheese causing them.  Also, people have found that magnesium seems to help.  

Your diminishing levels of FT4 and FT3 could be related to reduced absorption of the med.  Or it could be due to increased levels of TBG binding more of the T4 and T3.  If deemed necessary the doctor could run tests for both Total T4 and Free T4 along with TBG.   Otherwise just increase your T4 and T3 med to get FT4 to at least mid-range, and FT3 into the upper third of its range, along with assuring RT3, cortisol, Vitamin D, B12 and ferritin are optimal.  As an excellent thyroid doctor told me once, "dosage is irrelevant, only the physiological effect is important."

If you want to confirm anything I have said, click on my name and then scroll down to my Journal and read  at least the one page overview of a full paper on Diagnosis and Treatment of Hypothyroidism: A Patient's Perspective.  
Helpful - 0
1 Comments
Thank you gimel. I have not had these hypo symptoms until the last 3 months. I feel my best if my FT4 is around 1.2 and my FT3 is around 3.3. 3.4 or 4.0 were too high for me and I had heart pains.

Which cortisol test do you think I should have? I can request that and RT3. Won't my RT3 just show that something is blocking my thyroid hormones, which seems to be the case? My D is in the upper 90% of range. My ferritin in 50, which is good for me. It's been much lower, but my thyroid hormones were also much higher then and I felt fine. I supplement B12 and it is over range because of supplementation.

I don't eat chocolate. I rarely eat cheese. I am always low in magnesium, so I take several types and I am still low end on rbc tests.

I just sent my doctor an email quoting and linking to the page on pituitary disorders at UCSF, and highlighting ignoring TSH and getting FT3 into the upper part of range. I did the same with the prescribing info on Synthyroid (I take generic), where is says the same about treating central hypothyroidism.

I totally agree that dosage is irrelevant. It's the reduction of symptoms and the feeling of health and well being that matter. I'm about to head out to a ND appointment. I'm going to see what she says about increasing my T4. After I was on 113 mcg and wanted to increase to 125, she would only increase it to 100, so I got my 125 script from my primary. I don't know what was going through the ND's head, if she hadn't read my labs or what. I emailed her my latest labs last Friday and set up this appointment. I will see if she understands central hypothyroidism or not. I also asked for an increase to 150 from my primary in the email I just sent her. We'll see who responds with the right answer. I hope at least one of them will!
Have an Answer?

You are reading content posted in the Thyroid Disorders Community

Top Thyroid Answerers
649848 tn?1534633700
FL
Avatar universal
MI
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.