Seeking Support for My Mother's Complex Health Issues

[Mustafaaa]

My mother is a 58-year-old Pakistani woman who underwent thyroid surgery in 2021. Following the procedure, she began experiencing a burning sensation in her body, particularly in her feet and head. Additionally, she has been dealing with digestive problems and skin allergies called Urticaria since 2019. While she has been managing her skin allergies through medication and avoiding certain foods, the burning sensation has become increasingly painful since the surgery. As a result, she has been struggling with depression and difficulty sleeping due to her health issues.

Despite seeing numerous doctors and trying various medications, she has found little relief. She has also noticed that some medications exacerbate the burning sensation. On days when her skin allergies are severe, she feels less or no burning sensation, but the allergies make her daily life more challenging. Conversely, on days when the burning sensation is more intense, especially in her head, she has fewer or no allergies.

Recently, her burning sensation has become even more severe, to the point where it causes her to cry. The medication that used to alleviate her symptoms is no longer effective. She describes the burning sensation as feeling like "strong acid running through my entire body, especially in my head." We are seeking your medical advice and treatment recommendations for her condition.

Currently, she is taking the following medications:

For stomach: Bifasic 60mg Cap (DEXLANSOPRAZOLE); Kiride (Levosulpiride 50mg/capsule)
For sleep: Relaxin 3mg
For Urticaria Skin Allergy: Tekostine (Ebastine) 10mg
For thyroid: Thyroxine 50mcg
For blood pressure: Exval-A (Amlodipine / Valsar: 5m/160m)

[gimel]

Since the main symptom started after thyroid surgery, i think that is a strong clue that it may be thyroid related.   That is why I suggested as a first priority that she get her thyroid levels higher, by increasing dosage of T4.   If she has any reaction to B12 or iron supplements, just delay until thyroid levels are good.  

I wonder if your mother's description of "burning" could be better described as "tingling"?  I have run across that as a symptom of a patient who was hypothyroid.  

Taking the 100 mcg of T4 in the morning will spike her levels for 2-4 hours.  If she has blood drawn during that time the result will be falsely high.  So be sure to delay until after the blood draw, in order to better understand her true levels.  Yes, taking 50+50+25 is fine.  

[gimel]

Looking at your mother's test results, her B12 could be increased with supplements to get her into the upper part of the range.  Her Vitamin D is fine.  Her ferritin is way too low.  It should be at least 100.  Ferritin is a storage form of iron, readily available for use.  It is a more sensitive test of iron levels than serum iron.   I suggest that she needs to take about 120 mg of iron daily.  Not sure what iron supplement is available there, but we have several that have iron plus Vitamin C to help with absorption.  I also suggest that she take about 1000 mg of Vitamin C to avoid any gastric issue from the iron.  

Most importantly her TSH being in range means nothing.  It is unimportant when taking thyroid med.   As an example TSH frequently becomes suppressed below range when taking thyroid med, even when thyroid levels are well within range.   Your mother's FT4 of 1.o4 is only at 45% of its range, and FT3 is only at 42% of its range.  Also, I am sure she took her thyroid med in the morning before the blood draw for those tests, which will cause higher results.  To get a more representative result, it is best to delay the thyroid med until after the blood draw.   This is even recommended by the AACE/ATA Guidelines for Hypothyroidism, even though doctors never tell you to do that.  

So I am quite sure your mother is under medicated for her thyroid issue.  I suggest that she should get an increase in her dosage to a total of 125 mcg per day, and in 5 weeks, go back for followup tests, making sure to delay her daily dose until after the blood draw.   By the way there is no need to split the dose of T4 med.  She could take it all in one dose.   After the new test results, we can advise further.   Also get her started on the B12 and iron supplements daily.  

In the future there may be other issues that become clearer and need to be addressed,  after she gets her thyroid levels adequate, along with B12 and ferritin.  For now please help get these things done for her.  

[Mustafaaa]

Hi gimel,
Thanks for your feedback. Here is the situation:

The key problem here is the supplements and meds that might help also cause burning itself.

Supplements and Burning Sensation:

The burning sensation typically originates in her feet and gradually progresses to her head. She becomes anxious when it starts in her feet, anticipating the pain that will follow in her head. Sometimes the pattern is random. The burning is not on the skin but feels internal, leading her to tears. She describes it as feeling like "something made of fire has burst in my head."  Low B-12 might be the reason behind it. One solution is getting supplements but that triggers burning itself too and I get stuck here how can I address this issue?
After her surgery, she experienced a similar situation (where all meds and supplements caused burning in her whole body), and luckily an injection consisting of Ruling 40mg (Esomeprazole) and Maxolon 10mg (Metoclopramide) provided her relief. She was able to take various medications and experienced no burning in her body for several months.
However, this time, the injection was only effective for two days. I have observed that the injections and medications appear to be related to stomach issues, although the exact connection is still unclear with burning. Because before the survey she has no burning issues in her body and the surgery is related to the thyroid. My understanding is limited.

Medication Dose:
She takes the entire 100 mcg dose together upon waking up. She makes sure to take it on an empty stomach and then refrains from eating anything for at least half an hour.

We will again try and get her started on the B12 and iron supplements daily to see if it causes burning again this time. As per your advice, we will increase the dosage to 125 mcg tablets per day.  To achieve this, can she take two full 50 mcg tablets and one-half tablet? Would that be acceptable?

Thanks a lot for your help and guidance.

[gimel]

The sensation of burning is not a common symptom; however, since it started after the thyroidectomy, we have to suspect it as being thyroid related.   I am sure the doctor is looking at her TSH and FT4 and saying it is not her thyroid; however, patients taking T4 meds often find that they are not adequately converting the T4 to T3.  Free T3 largely regulates metabolism throughout the body.  It is very important to know the FT3 level as well as FT4.   TSH testing has little use after starting on thyroid med, since the med dose spikes FT4 within a couple of hours and also suppresses TSH for most of the day.  So a TSH that is even suppressed below range does not mean the patient is hyperthyroid due to a high dosage of thyroid med.   Thyroid med dosage should not be based on TSH level.  Instead the patient's med dosage should be adjusted as needed to relieve hypothyroid symptoms, without gong so far as to create hyper symptoms.   In some cases the patient will also need to add a source of T3 in order to get FT3 to adequate levels.

You can read about this in a paper I co-authored.

https://thyroiduk.org/wp-content/uploads/2022/10/Patients-Guide-Final-V5.pdf

So the most important thing right now is to get her tested for Free T3.  I would also suggest testing for Vitamin D,  B12 and ferritin.  Those are also important for a hypothyroid patient.  I also suggest giving the doctor a copy of the link above and asking that she be treated clinically as described n the paper: for symptoms, as well as FT4 and FT3 levels.  Also Vitamin D should be at least 50, B12 in the upper part of its range, and ferritin should be at least 100.

Do you think you can get all this done for her?

[Mustafaaa]

Thank you so much. I will get her tested as you mentioned and will share the test results.

[Mustafaaa]

Hi, thank you once again. First, here are her test results:



Chemistry                   Result                  Normal Range:
B12                                436 pg/mL            (189 – 883)
Ferritin                        19.4 ng/mL           ( 5 – 204)
25-OH Vitamin D      61.7 ng/mL          ( 30 Desirable Conc. > 150 Intoxication)
TSH                             0.72 µIU/mL        (0.4 - 4.5)
Free T-4                      1.04 ng/dL           (0.7 - 1.5)
Free T-3                       2.5 pg/mL            (1.71 - 3.71)

Now let me explain her situation once again. Currently, her primary issue is a burning sensation, which started after her thyroid removal, and it affects her entire body, particularly her feet, and head. She mentioned that the burning sensation in her head worsens when she sleeps, often causing her to wake up and walk around due to the severe discomfort. Sometimes, she experiences it throughout her whole body, and even she feels it in her bones.

Her secondary issue, which she had even before the thyroid removal, is her skin allergy. Additionally, she has sleeping issues, depression, and anorexia. Previously, she used to receive injections and medication to control her skin allergies, which were effective. However, now, if she receives skin allergy injections or medication, it causes a severe burning sensation that is even more painful than the allergies themselves. We attempted to administer the allergy vaccinations after her surgery, but even a weak dose triggered the burning sensation, forcing us to discontinue. The same reaction occurs with certain medications and calcium supplements she has tried. It seems that many of the medicines and supplements meant to treat her secondary health issues worsen her burning sensation for some reason.

Here's something we noticed that was helpful in the past: After her surgery, she experienced a severe burning sensation, similar to her current condition. Injection A (mentioned below) provided relief from the burning sensation for a couple of months, allowing her to take medicine without significant discomfort. However, this time, when we tried Injection A, it only reduced the burning sensation for two days before it returned. It was not as effective as before. We are unable to determine the root cause of her condition and how to proceed.

Regarding the medications and treatments that help mitigate her burning sensation:
Injection A: Ruling 40mg Injection (Esomeprazole) +Maxolon 10mg Injection (metoclopramide)
Medicine: Bifasic 60mg Cap (Dexlansoprazole); Kiride (Levosulpiride 50mg/capsule)


Additionally, here is a complete list of all the medications she is currently taking:

For stomach: Bifasic 60mg Cap (DEXLANSOPRAZOLE); Kiride (Levosulpiride 50mg/capsule)
For sleep: Relaxin 3mg
For Skin Allergy: Tekostine (Ebastine) 10mg
Injection for severe allergies: Avil (Pheniramine)+Dexa (Dexamethasone)
For thyroid: Thyroxine 50mcg (totaling 100 mcg/day)
For blood pressure: Exval-A (Amlodipine / Valsar: 5m/160m)


I hope this information helps you understand her situation better. Let me know if there's anything else you need or any further steps we should consider. Thank you for your ongoing assistance.

[Mustafaaa]

I don't know if relevant, she doesn't have ovaries as they were removed long time ago like 201008

[Mustafaaa]

I wanted to mention that she doesn't have ovaries, as they were surgically removed in 2008. I'm sharing this information in the hope of identifying the underlying cause of her burning sensation. Thank you in advance.

[gimel]

You mentioned your mother had thyroid surgery.   Was her entire thyroid gland removed?

Please post her thyroid related test results and their reference ranges, as shown on the lab report.  Even more important than test results are symptoms.  Please tell us about any other symptoms she has.  

[Mustafaaa]

Her thyroid gland was completely removed. Following the surgery, The doctor conducted multiple tests and made adjustments to her medication accordingly. Here are her recent test results:

Test: (@Exce labs, Pakistan):
TSH: Result (0.67 µlU/mL) Reference Range (0.4-4.5)
Free T-4: Result (1.1 ng/dL) Reference Range (0.7-1.5)
Currently, she takes two tablets of Thyroxine 50mcg daily.


Symptoms:

The primary concern is the severe burning sensation that affects her entire body, particularly her head and feet.
In addition to the burning sensation, she also experiences difficulties with sleep, skin allergies, and digestive problems.