I’m new to this forum but not new to living with thyroid disease. I was diagnosed with Grave’s Disease 10 years ago and chose treatment with antithyroid medication, methimazole. After 18 months, I stopped the medication and had a 2 year remission. I then started an ongoing cycle of Grave’s flare-ups, treatment with methimazole, and remissions lasting a year or less.
In April of this year, a year remission ended with me becoming hypo instead of hyper. It’s been a miserable few months since then. I don’t seem to be tolerating Levothyroxine well. Here’s a brief history of how my previous endocrinologist prescribed medication with only TSH being tested. The range for all these levels was .40-4.50.
4/20/21 - TSH 7.72 - Levothyroxine 12.5 mcg
6/10/21 - TSH 3.99 - Levothyroxine 25 mcg
7/15/21 - TSH 2.98 - Levothyroxine 37.5 mcg
8/10/21 - TSH 3.40 - Levothyroxine 50 mcg
Levothyroxine at 50 mcg caused my blood pressure (150s/90s) and heart rate (low 100s resting) to go too high. I was taken off medication completely for two weeks. After the first week, my blood pressure and heart rate returned to normal. After two weeks, I was experiencing hypo symptoms again.
8/26/21 - TSH 4.80 - Levothyroxine 25 mcg
I ordered the 8/26/21 blood work myself, because I’m without an endocrinologist right now. I also chose the 25 mcg dosage myself based on that blood work. I feel better in the morning after I’ve taken that dose, but around 2:00 PM, I start feeling miserable.
I start hurting everywhere. All my muscles and joints ache. It also feels like there’s a low electrical current running through my body. Like a buzzing feeling. I’m wondering if it’s nerve agitation.
None of the OTC pain medications I’ve tried help. By evening, I feel like a zombie from the fatigue and pain. A few days ago, I broke down in tears and told my husband I wanted to go to the ER and beg a doctor to help me.
Can someone please help me?! I’ll include more of my lab results in the comment section. Thank you for taking time to read this!
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Unfortunately I’m very far from being an expert here since I only joined a few days ago.
But one thing that stands out to me straight away is definitely your Vit D3 is way too low for comfort.
Are you taking supplements?
Mine is also very low and I’ve been advised that current research advises a good level should be around 125-150.
This is one thing I thought… but please think it through and ask more educated advice.
I wonder if you should take a small dose of Levo in the afternoon since you feel so bad? Maybe either divide the current dose in half twice a day (so maintaining the same daily dose)
Or see if you can supplement say 7.75 or 12.5g in the afternoon either daily of every couple/few days to see if you feel better?
Your best dose yet seemed to be 37.5 if I’m reading it correctly..
Try taking Levothyroxine 25 mcg twice a day. Half life of Levothyroxine is 16 to 18 hours, so for most people once a day dose is enough but I have seen many fast metabolizes who need small dose 2 or even 3 times a day. Try second dose an hour or so before effect of 1st dose runs out.
Your high thyroid antibodies suggests you have Hashimoto’s
Have you ever had TSI or Trab Antibodies tested to confirm Graves’ disease
It’s possible to have both Graves and Hashimoto’s at same time
But Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid. Many Hashimoto’s patients are misdiagnosed as Graves patients at this hyper phase if Graves’ disease antibodies aren’t tested
The aim of levothyroxine is to increase the dose slowly upwards in 25mcg steps until TSH is ALWAYS under 2
Most people when adequately treated will have TSH around or under one. Ft3 at least 50% through range and Ft4 usually a little higher at 60-80% through range
ALWAYS test thyroid as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
A good quality vitamin B complex with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B is a recommended option that contains folate, but is large capsule. You can tip powder out if can’t swallow capsule
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
High thyroid antibodies confirms autoimmune disease
You need coeliac blood test done BEFORE considering trial on strictly gluten free diet
Poor gut function when hypothyroid can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal
Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
I agree with that - get tested for coeliac BEFORE you go totally gluten free. I didn’t and since my antibodies went down (massively) and my IBS improved there was no way I’d want to eat gluten again.
It reads as though your Graves has burnt itself out and I would think a scan / ultra sound would confirm this " guess ' ;
A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10mcg plus a measure of T4 at around 100 mcg.
You might feel more able on full spectrum thyroid hormone replacement - Natural Desiccated Thyroid as this contains all the same known hormones as that of the human gland - namely T1. T2. and calcitonin plus a measure of T3 and a measure of T4 :
NDT is actually pig thyroid dried and ground down into tablets referred to as grains and was the treatment of choice and used successfully for over 100 years to treat hypothyroidism, prior to Big Pharma launching synthetic thyroid hormones in the middle of the last century.
It is available in the States and you can buy without a prescription as I read you are currently without an endocrinologist.
It is imperative that you are dosed and monitored on your T3 and t4 blood test results and we generally feel better when both T3 and T4 are balanced within the ranges.
No thyroid hormones work well until your strength strength is strong and solid and we need ferritin, folate, B12 and vitamin D at optimal levels for the thyroid hormone replacement to work effectively.
You might like also to dip into the Elaine Moore Graves Disease Foundation website which is Stateside and offers a patient to patient platform where you may find support more local to you with regards to recommendations of medical specialist who have an understanding of Graves Disease.
Graves is an auto immune disease and as such, it is for life, and I found researching Graves has given me a better understanding of where I am in all this.
I was treated with RAI back in 2005, a treatment I deeply regret and believe we should all have the option of long term anti thyroid medication and when and if, the gland dies, we all need the treatment options of T3 Liothyronine, T4 Levothyroxine or T3/T4 combo or NDT which I understand is more easily available stateside than here in the UK.
I love this forum and all the responses above. I’m sorry you’re struggling.
Elaine Moore is a great resource and answers personal questions on her forum. I have seen her give recommendations on dosing and types of meds to try. You can also search her forum for others asking similar questions and her response. It might take a bit for her to respond to an inquiry.
I am in the U.S. and was diagnosed with Graves. I’m now supplementing with T3 so understand about the weirdness of being hyper and then hypo.
I too thought your Vit D looked low (& B12) My first Vit D test with a integrative functional Dr was around your result and she recommended supplementing. Dr said it should be in the upper range especially with an autoimmune disease. I was told Vit D is fat soluble, so it stays in your system. Too high can also cause problems. Which is why I was started on a lower dose (1000 IU) and increased gradually based on testing every 6 months. I’m up to 10000 IU now as lower doses didn’t move the needle. I use a lower dose during summer months as you get Vit D from sun. It’s important to test on a regular basis when supplementing.
I was told by Dr. B12 is water soluble so going over range is not harmful. I have to supplement with B12 continuously or my levels drop really quickly even with a B complex added in (maybe I’m just weird 😉) I use methylated B12 with methylated folate added as I have the MFTHR gene mutation. The forum for pernicious anemia here is a good resource for B12 too. I’ve read there and other places you can have a high B12 test but may need to still supplement as it’s showing what’s in blood, but not necessarily what’s in your tissues. It’s good to look at symptoms. I haven’t been diagnosed with anemia, but seem to have troubles with B12 and have less symptoms when taking it.
I didn’t have luck with endocrinologists here in US, so have been using a “integrative functional” doctor who understands supplementing vitamins, their importance for autoimmune disease and testing them, also testing all thyroid, not just TSH w/reflex T4 once I was in the “euthyroid range”. That’s not to say you won’t find a great endocrinologist. Just know there are other dr.’s who can help too. Sadly, a lot of integrative functional doctors (who are also board certified) don’t take insurance here due to being tired of fighting our insurance system. I became willing to pay out of pocket for the dr and use insurance for most testing and prescriptions as I found more outstanding care with them and a listening ear. I am doing better because of it.
Hope you feel better soon! Hang in there - you will find the answers that are right for you and your health. You are not alone 😊
I’ve recently started taking 5000 iu of Vitamin D3 daily.
hhshahmd:
I have tried taking Levo twice a day. 25 mcg in the morning and 12.5 mcg in the afternoon. Unfortunately, I can’t seem to tolerate any dose higher than 25 mcg. Higher doses cause my blood pressure and heart rate to rise.
SlowDragon:
Yes, I have been told by an endocrinologist that my antibodies indicate I have both Grave’s Disease and Hashimoto’s Disease. In the past, when I’d come out of remission I’d always go hyper. Hypo didn’t start becoming a problem until a couple of years ago. Now, hypo seems to be my new normal.
Folate range says:
Low <3.4
Borderline 3.4-5.4
Normal >5.4
There’s not a high range given, which seems odd.
I will order a vitamin B complex. I’ve tested negative for celiac disease. Thanks for all the links on gut health and gluten sensitivity! I’ll check them out.
Fruitandnutcase:
I tested negative for celiac, but I’m going to go gluten free. I’m hoping it will help lower my high antibodies.
PennyAnnie:
I, too, think my thyroid is croaking. I’ll ask my new endocrinologist about the ultrasound. I’d like to know that for sure. I’m very interested in trying NDT. I do’t seem to be tolerating Levo very well. Thanks for the Elaine Moore website recommendation!
Hmc449:
Thanks for the Vit D and B12 info! I’m learning so much from reading these replies. I’m scheduled to see a new endocrinologist at the end of October, but I’m also waiting to hear back from a functional medicine nurse practitioner who s supposed to be very knowledgeable on thyroid issues. If she’s accepting new patients, I’m hoping I can get her to prescribe NDT.
Klr31:
I have not tried other brands. I’m hoping to try NDT, but if that ends up being a problem, I will try that.
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Thanks again, everyone! I’m going to do a separate comment for the saliva test results I received today.
These are my ZRT Saliva Test results. I’m not exactly sure what all of this means, but I’m researching it.
DHEAS - 1.5 L (2-23 ng/mL)
Cortisol morning - 7.3 (3.7-9.5 ng/mL)
Cortisol noon - 2.4 (1.2-3.0 ng/mL)
Cortisol evening - 0.8 ( 0.6-1.9 ng/mL)
Cortisol night - 0.4 (0.4-1.0 ng/mL)
Symptom Categories:
Estrogen/Progesterone Deficiency 33%
Estrogen Dominance/Progesterone Deficiency 37%
Low Androgens (DHEA/Testosterone) 48%
High Androgens (DHEA/Testosterone). 23%
Low Cortisol 39%
High Cortisol 28%
Hypometabolism 56%
Metabolic Syndrome 51%
Lab comments:
DHEAS is lower than the expected age range. Chronic low DHEAS may suggest HPA axis dysfunction, particularly if cortisol is also low and symptoms are indicative of low adrenal function. DHEAS is highest during the late teens to early twenties (10-20 ng/ml) and drops steadily with age to the lower end of range by age 70-80 (2-9 ng/ml). Mid-life DHEAS levels in both males and females are usually in the range of 5-8 ng/ml. Low DHEAS may contribute to low androgen symptoms (decreased libido, depression, fatigue, memory lapses, and/or bone loss), since DHEAS is a testosterone precursor. In individuals with very low DHEAS (< 2 ng/ml), DHEA supplementation in the 5-25 mg dosing range usually raises DHEAS to levels seen in mid-life.
Cortisol is normal throughout the day; however, a significant number of symptoms commonly associated with low and/or high cortisol are reported. Under stress situations the adrenal glands respond by increasing cortisol output. However, when cortisol levels are within normal range under situations of excessive stress, as reported herein, this suggests that the adrenal glands may be overworking to keep up with the demands of the stressors, which could eventually lead to HPA axis dysfunction. HPA axis dysfunction is most commonly caused by stressors which include: psychological stress (emotional), sleep deprivation, poor diet (low protein-particularly problematic in vegetarians), nutrient deficiencies (particularly low vitamins C and B5), physical insults (surgery, injury), diseases (cancer, diabetes), chemical exposure (environmental pollutants, excessive medications), low levels of cortisol precursors (pregnenolone and progesterone) and pathogenic infections (bacteria, viruses and fungi). A normal daily output of cortisol is essential to maintain normal metabolic activity, help regulate steady state glucose levels (important for brain function and energy production), and optimize immune function. Depletion of adrenal cortisol synthesis by a chronic stressor, sleep deprivation, and/or nutrient deficiencies (particularly vitamins C and B5) often leads to symptoms such as fatigue, allergies (immune dysfunction), chemical sensitivity, cold body temp, and sugar craving. For additional information about strategies for supporting adrenal health and reducing stress(ors), the following books are worth reading: "Adrenal Fatigue", by James L. Wilson, N.D., D.C., Ph.D.; "The Cortisol Connection", by Shawn Talbott, Ph.D.; "The End of Stress As We Know It" by Bruce McEwen; "Awakening Athena" by Kenna Stephenson, MD.
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