Needing advice for my daughters hypothyroid iss... - Thyroid UK

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Needing advice for my daughters hypothyroid issues/dosing please

Ajaeger
Ajaeger

Hi to all. I have been watching this site for some time in hopes of understanding the thyroid functions better and staying a step ahead of Dr’s. I’m afraid I’m a bit overwhelmed and needing advice, please. My daughter is 20. She was diagnosed hypo in June of this year. We live in the US. In retrospect she started showing hypo symptoms about 3 years ago. This past January it went from feeling fatigue and tired to all out rough symptoms. Her main complaints are extreme constipation, extreme fatigue, cold intolerance ( this has been happening for years), falling asleep when she shouldn’t be sleepy ( ex: I’ve had to drive her to college classes after a full nights sleep because she was too tired to drive and feared she’d fall asleep while driving), insomnia, erratic periods ( ranging from 18- 70 days apart) and now she is experiencing brain fog and is having trouble concentrating and absorbing the instrctuions in her classes.

I had her take a private blood test in February because of her escalating symptoms. They came back indicating hypothyroid. She decided to go to this one MD that supposedly specialized in thyroid issues. He was a total waste. Suggested herbal supplements only and was far more interested in signing her up for a gynecology exam than looking at her thyroid. When he strongly suggested I didn’t need to accompany her to the next appointment, I labeled him a ‘creepy pervert’ and both me and my daughter decided to never return!

Here are the results from her initial labs: Feb 2018 (no meds)

T4 - 4.3 (4.5 - 12.0)

Free T4 - 0.85 (0.90 - 1.60)

TSH - 3.890 ( 0.530 - 3.590)

Free T3 - 3.1 (2.2 - 4.2)

Thyroid Peroxidase AB - 1IU ( <9IU)

Iron, serum - 108 (37-145)

Vitamin B-12 - 393 (200-950)

Ferritin - 56 (13-200)

Folic acid - >20 (> = 6.0 sufficient)

After the first failed Dr appointment I made an appointment with our family GP in hopes of getting a referral to an endocrinologist. I went with my daughter to this appointment in June. I was pleasantly surprised that he said he would start treatment for her as her symptoms and lab number suggested the need. He put her on 50 mcg Levo. She took that dose for 8 weeks and went for repeat bloods. These are her lab results from that:

August 2018: ( 50mcg Levo)

TSH - 0.058 ( 0.400 - 4.00)

Free T4 - 1.5 (0.9 - 1.7)

This was all the GP would run. He claimed she was over medicated and reduced her down to 25mcg Levo. I was not at this appointment and my daughter just took his advice and left. She was still suffering with the same symptoms as before, although not as severe. She showed no signs of overmedication and since he didn’t run a free T3 test , I had her privately tested.

Private labs August 2018: (50mcg Levo)

TSH - 0.052 (0.530 - 3.590)

Free T4 - 1.41 (0.90 - 1.60)

Free T3 - 3.8 (2.2 - 4.2)

My daughter decided to try the 25 mcg the GP suggested despite, in my opinion, she shouldn’t have. She stayed on the 25mcg for almost 9 weeks before the GP saw her again. Her symptoms stayed the same. Better than she was before treatment but no better or worse than when she was on the 50 mcg dose. The GP rested her and those results were as follow:

November 2018 GP labs : ( 25mcg Levo)

TSH: 0.251 - (0.400 - 4.00)

That’s all he tested. He had his nurse call and tell my daughter to stop taking the Levo and to come in and see him. I decided to go in with my daughter ready to confront him and show him she was not ever over medicated and that she’s still suffering symptoms and he needed to leave her on the meds. My daughter was in the middle of mid term exams at school and is terrified she’d go back to feeling like she did before she started treatment as even though she still feels rough it’s not as bad as it was prior to any treatment. So our goal was to get him to at least leave her on the 25 mcg. We went in and he had the balls to tell us she was hyperthyroid now. I respectfully told him she wasn’t. He again told me she was. I went from 0-100 in about a nanosecond and couldn’t help myself and just blurted out that he was wrong and that you don’t just go hyper if your hypo and that it would be over medication and that she wasn’t overmedicated because her Free T4 and Free T3’s were never out of range and that I had tested her privately since he didn’t test everything last time she was in. He then told me that FT4 and FT3 aren’t very sensitive and that TSH is highly sensitive and that’s why he only tested that measure and why he is dosing on that alone. I felt if I tried to argue anymore with him that he’d never agree to keep her on the measly 25 mcg dose and pull her off and send us on our way with nothing, so I stopped talking and let my daughter sweet talk him into allowing her to stay on the 25mcg. He agreed to keep her on the 25 mcg but only wanted her to take the 25mcg monday-Thursday and the take only 12mcg Friday - Sunday! Obviously, she had no intention of taking 12mcg. I’ve never even heard of anyone taking only 12 mcg! He even told her she would probably feel worse because of it but at least she would feel ok during the school week so her studies should not dive-bomb! Ugh! He wanted new bloods after 6 weeks. Soooo, back to the private lab we go. I had her tested a week after her labs at the GP as she couldn’t get in the next day. Those results are:

Private labs November 2018: (25mcg levo)

TSH - 0.89 (0.400 - 4.100)

FT4 - 0.86 ( 0.80 - 1.90)

FT3 - 2.5 (2.2 - 4.2)

Vitamin B-12 - 420 (200 - 950)

Folic acid - >20 ( > = 6.0 sufficient)

Ferritin - 42 (13 - 200)

Vitamin D, 25 OH - 38 ( 30-100 optimal)

After getting these results she has made another appointment to see the GP. We go in next week. Our goal is to get him to give her several months of 25mcg Levo. Then we plan to find a new Dr (or however many it takes) to help her. We figure if she gets the Rx for the Levo she can increase the amount on her own until she finds a suitable Dr. That will actually help her.

So that’s the story. She does take her Levo first thing in the morning on an empty stomach. Waits at least an hr. before eating or drinking anything other than water. All tests have been done first thing in the morning (before 9am) with at least 24 hrs from last Levo dose. She has started eating more meat as she rarely ate meat prior to this fall in hopes of increasing her B-12. I want her to take b-12 supplements as well. I will look into ways to increase ferritin without jacking up iron too much ( would eating chicken liver suffice?) I have just bought vitamin D-3 & K-2 spray for her to take. Any ideas why all her levels ( TSH, FT4 & FT3) are all low in range now? I know it would suggest secondary hypo if those were results without Levo but what does it indicate if those are the results with Levo (25mcg)? I’ve looked and really can’t find any explanation for those number now.

Thank you for reading this long post. I know thyroid issues are not an easy fix and am hoping for some feedback and direction from you wonderful ladies.

12 Replies
oldestnewest

Did she get antibodies tested for Hashimotos at all? As I think she might have an autoimmune problem. If I'm right, levo alone, won't fully help her symptoms, and it would explain fluctuations in her results as well.

You can read more into the gut link to hashimotos via Isabella Wentz's website, and I'd recommend her Hashimotos protocol for learning more about the link to certain foods! This might get you started:

thyroidpharmacist.com/artic...

Ajaeger
Ajaeger
in reply to Cooper27

Thank you for the quick response. She did get an antibody test back in Feb. and it was negative ( Thyroid Peroxidase AB -1IU ( <9). I have since fingered she didn’t have Hashimotos and not done research on it. I will read the link you included and start investigating Hasimostos. Thank you so much!

Cooper27
Cooper27
in reply to Ajaeger

There's a couple of types of antibodies - TPO (The one you've had) and anti-thyroglobulin antibodies, one can be positive and the other negative, so it could still be hashi's.

I hope she improves soon!

Ajaeger
Ajaeger
in reply to Cooper27

Thank you for the clarification. I will get all antibodies tested privately .... along with a new batch of thyroid hormones very soon. Thanks!

Ajaeger
Ajaeger
in reply to Cooper27

It’s crazy because when I had her tested, I told them I wanted a full thyroid panel and they even told me that the test they ran even tested antibiodies. I guess you can’t even leave bloods to the ‘ experts’ without keeping an open eye to things they are missing! Thanks again!

I am also in the US. I am really too new on here to advise you regarding your results, but I wanted to share a resource. To try to find a better doctor situation, I suggest you check out the website fertilitycare.org to see if there is a FertilityCare/NaProTECHNOLOGY clinic in your area. Some of these will be ob/gyn clinics, some will be general practitioner. Their training is to not just treat a symptom but to try to get to the root cause. While they often are working with people to address fertility issues, it was where we finally found a doctor that was willing to test appropriately, treat to symptoms not test results, and dig deeper.

My daughter has been dealing with crippling depression with hypomania and suicidal ideation that looks like bipolar disorder. While she may in fact have mental health issues, the FC ob/gyn diagnosed both hypothyroidism and estrogen dominance at this point. He is not done investigating. We are in the early stages of getting her medication going, but we are seeing improvements in mood. And she wasn't given a bandaid of artificial birth control - rather, she is being treated with bioidentical hormones to bring things into balance.

Ajaeger
Ajaeger
in reply to soupybp

Thank you so much for your reply. I will go and look into the clinic you suggested to see if there are any in the area. We’re in Austin, Texas and I have not heard of them before, but will do a wider search as we’re willing to travel if it means she gets better.

I’m sorry to hear of your daughters health struggles. It’s so hard to watch your child not feel well and be healthy! I keep thinking my daughter should feel on top of the world at 20! Instead, she is struggling day to day and is a shell of who she was just a couple years ago. I wish y’all the very best.

soupybp
soupybp
in reply to Ajaeger

I feel the same as and for you! My daughter is 16, a junior in high school, and is also just a shell of the girl she was freshman year. She is just so miserable. I am encouraged by the small gains we have seen so far since starting with this doctor a month and a half ago (after battling issues for well over a year). It looks like there are a few clinics in Austin.

One of the things the doc did was have her take a Creighton fertility monitoring class right away so that he could time some hormonal testing properly. We weren't even 30 minutes into the class when daughter leaned over to me and said, "There is something wrong with me." No doctor had ever asked about her cervical mucus...or the fact that it was constant and extremely heavy - which can happen but it usually a sign of a hormonal issues of some kind or a physical issue with the cervix. I had never thought to ask...and she just thought that's how it was for everyone.

Even though it is not part of the Creighton method, doc also had us start tracking her basal body temperature as well which has been helpful. Since the mucus is hard to read, the temps are a good secondary piece of information for her for us to get the blood draws at the right time and supplement at the right time too. It should also start to shift higher once we are getting into optimal thyroid dosing. This monitoring and charting can tell the doctors so much to help point toward what to look at and investigate a multitude of issues. Plus it is just helpful for young women to really understand how their bodies work.

vocalEK
vocalEK
in reply to Ajaeger

Try the web site for The American Thyroid Association. They have a rich patient resource information section. You can also search for a member doctor by state: thyroid.org/patient-thyroid...

PMing you. Hang in there

I suggest you read Dr Barry Durrant-Peatfield's book 'Your Thyroid and How to Keep it Healthy: The Great Thyroid Scandal and How to Survive it' which will explain everything you need to know on judging how well medicated your daughter is but basically she needs to take her pulse and temperature immediately on waking in the morning. If she is hypothyroid these will be low. If she is well/adequately medicated they will be normal ie pulse around 72, temp 37 degrees Centigrade. If she then takes medication check temp and pulse mid afternoon to see what effect the pills have had. You need to aim for normal temp and resting pulse below 80. If they go above then she is becoming hyperthyroid.

Basically your thyroid and thyroid meds control your metabolic rate so you just need to look at measures of that ie pulse and temp to see what's going on. Good luck!

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