New Blood Results...Graves Disease and Concerned about Medication if it is the correct dosage from ENDO? Any Advice? I feel so sick!

[Kim327]

These are my October 28th Blood Results (left side of page) compared to my Results from September 13th (right side of page).

Diagnosed Graves in February 2019. Was put on Methimazole 10 mg a day to start. Then reduced to 5mg a day, then 5 mg 3 days, 2.5 mg 5 days a week and then to a 2.5mg 4 days a week (from September labs to todays visit).

Today, my ENDO has reduced me to 2.5mg of Methimazole 3 days a week (Mon, Wed, Fri). I am so confused...... My last visit he said that patients usually feel better when their TSH is at a 1.....

My Sept blood tests show TSH at 2.070 mg/dl.

My October 28th blood tests show 3.190 mg/dl.

I am going up not down to 1..... what's wrong with this picture? I am feeling worse and worse every day!

My muscle aches in my arms legs and neck, head hurts, I have thrush and sore throats, tired, anxious, depressed etc. My ENDO said that he wants me tested for Celiac Disease. I am taking blood tests in 2 weeks. He sending me to a GI. I have stopped Gluten months ago. I am also off dairy and avoid anything not fresh or processed.

However, he also said that my symptoms could happen to people who are on a higher doses of Methimazole. Since I am only on 2.5 mg he can't see me having those symptoms.

My reply was, "Doesn't everyone's body react differently to medications?" He did agree. anyway he is sending me to a GI doctor and having me tested for Celiac and now I am still on Methimazole 3 days a week.

I was first diagnosed 11 months ago. It took me 9 months to raise my TSH to a 2.070. Now in just 5 weeks I went up to 3.190 (over 1+) in such a short time!

Is this fast since I took 9 months to get to a 2?

Also, I am not sure why my doctor would keep me on methimazole when I am going up so rapidly to hypo now. I feel absolutely awful. He said he wants to slowly take me off Methimazole so I don't spike down to hyper. I am scared though. I feel so bad.

I am also not sure if the methimazole is affecting me so poorly and its not Celiac. I am sick and miserable all the time. sinus pressure, neck, shoulder, leg pain, sore throats, tense and now I have thrush. Was on antibiotic multiple times as well as a steroid for pain over a month ago. It has been horrible.

Any thoughts?

My B12 is high (seen in photo)

My Glucose is 1 point higher at 101 now from a 94mg/dl Sept.

My D is normal range 38.0 ((32.0-

[Fruitandnutcase]

Vitamin D - on a scale of 32-100 I would never say 38 was normal. I would say it was pretty low. I would want mine near the top of the range.

I’d want my B12 to be at the top of my range too although in the past I’ve had it over like yours is but I was supplementing so I just cut back until it was down to within the range.

What are your ferritinand folate like? You need B12, D, folate sand ferritin to be well up in their ranges to help your thyroid.

You are right - your TSH is going the wrong way! That is why your doctor is reducing your methimazole. I was left on a pretty high dose of carbimazole for three months at the start of my block and replace treatment for Graves and by the time I saw my endo my TSH had gone from >0.03(0.35-5.5) to 7.9. When I saw the endo he said to stop the carbimazole for ‘a few days’ and start taking the levothyroxine right away. I thought ‘for a few days’ was a bit vague but I took the levo and stopped the carbimazole for five days and it was ok.

You should have thyroid antibody results if you have Graves’ disease - do you know what they were?

If you are going to be checked out to see if you are coeliac you will definitely need to start eating gluten or the test won’t work properly.

I was told to take high strength vitamin C along with my carbimazole so it might be worth you trying that too. I took 1000 slow release vitamin C plus zinc and felt pretty well considering I was being treated for Graves.

Not surprised you feel sick and miserable all the time.

[Kim327 in reply to Fruitandnutcase]

Thank you for your reply!

In March 2019

anti-tpo ab was 774

TSI was 2.93

In April 2019

Anti-Tpo Ap 752

TSI 2.40

Notes: Abnormal range for patience with hyperthyroid Graves is > 0.55 IU/L

Noted: there is close correlation of TSI leveles with clinical activity and severity of ophthalmic Graves’ disease.

I also had Went Low t3 and T4

Thyroxine T4 - 4.4 (4.9-12.9) if/dL

Free T4 Index - 1.4. (1.5-3.8)

In March my TSH was 0.005. My vitamin D was 22.5 in March too which was low.

Should I raise Vit D? I just started vit c 1000 a day about 10 days ago too !

Doctor said I had mild Graves! I just feel bad. He said when people with one autoimmune disease they are more likely to have another. He is concerned about my gut. Guess which is why I have to now go to a GI

.

Been to more specialist than I can count. Keep thinking there is something more serious everyone is missing because of my issues.

Ear pain from grinding my teeth. Tooth infection, neck pain from neck issues on one side. Been to the orthopedic surgeon and having a neck MRI. Had shots in my neck for pain and physical therapy. Had CT scan of my chest to show normal thyroid size. Also spine MRI, brain CT scan for tumors, mammogram of my neck. Went to an ENT, 2 w ENDO’s, dentists, OBGYN, ER2 times, Urgent Care 2 times, Cardiologist, primary care, eye doctor, dermatologist and orthopedic surgeon.

This thing in the back of my neck is scary just because I have arm and shoulder pain on this one side. I also have constant feeling of clearing my throat. I had every doctor check my throat. I do have Oral Thrush.

Praying this neck MRI puts me at ease. I am so tense and so stressed. It’s so much in 10 months

I also may be going through menopause!

[Valarian]

Do you know what your thyroid levels were when you were first diagnosed? Also, how was your Graves’ diagnosed ? Did you have antibody tests or a thyroid scan ? (I’m assuming you aren’t in the UK, as we are prescribed carbimazole rather than methimazole).

10mg day is quite a low starting dose, and your thyroid levels seem to have come down pretty quickly; TSH has also recovered from what was presumably a barely-measurable reading quite fast - as you say, everyone is different, but after many months of treatment for Graves, my TSH is still rock-bottom. Your current dose of methimazole is very low. If you definitely have Graves’, they will typically want to keep you on anti-thyroids for at least twelve months to ensure you have achieved remission - however, there are other reasons for being hyper which may resolve themselves, in which case you wouldn’t need to continue the medication anyway.

Here is some more info:

thyroiduk.org/tuk/about_the...

[Kim327 in reply to Valarian]

Thank you for your reply!

In March 2019

anti-tpo ab was 774

TSI was 2.93

In April 2019

Anti-Tpo Ap 752

TSI 2.40

Notes: Abnormal range for patience with hyperthyroid Graves is > 0.55 IU/L

Noted: there is close correlation of TSI leveles with clinical activity and severity of ophthalmic Graves’ disease.

I also had Went Low t3 and T4

Thyroxine T4 - 4.4 (4.9-12.9) if/dL

Free T4 Index - 1.4. (1.5-3.8)

In March my TSH was 0.005. My vitamin D was 22.5 in March too which was low.

I also had my thyroid scanned. Both CT scan of my chest which showed normal thyroid

and a mammogram at time of diagnosis.

I am going for a neck x ray next week due to pain in the back of my neck. I have had x rays already but my orthopedic surgeon is ordering one. My neurologist thinks it’s a pinched nerve. I do have disc problems in my neck.

I had had a brain CT scan too and a back MRI.

I am praying this all clears up!

Would you add more vitamin D?

I am so scared to eat gluten. I am scared to eat anything at this point because I don’t want to feel bad. However at this point I think I feel so terrible who knows.

Thanks again!