Graves troubles

[Woodsman4]

38 year old male. I was diagnosed with graves in August of 23. I started gluten free. I was on an initial high dose of methimazole then by December of 23 was very much in the hypo range after my endocrinologist refused to reduce my dose. I was able to reduce and wait and by late Feb 24 I was on a 10mg maintenance dose. My TSH at that point was back in range and has stayed that way since. I was able to maintain fT3 in the middle of the range and fT4 in the upper half of the range while slowly reducing my dose down for the last year to my current 3.75mg daily dose. I have been on 20,000i/u of vitamin d3 with k2, fish oil, coq10, b12, magnesium, Brazil nuts, zinc and phyto-4. I had a moderate to severe case of thyroid eye disease that started in October 23 and is mostly resolved now with no lasting effects.

My most recent labs in mid December when I was on 5mg methimazole daily

TSH 1.68 range .45-4.5

FT4 1.38 range .82-1.77

FT3 2.7 range 1.81-4.06

Reverse T3 15.1 range 9.2-24

TSI 4.48 range 0-.55

Anti thyroglobulin antibodies <1 negative

Anti thyroid peroxidase Ab 200 range <9

Thyroid peroxidase TPO Ab 150 range 0-34

Testosterone 600 range 264-916

Free testosterone 19.9 range 8.7-25.1

Estradiol 40.1 range 7.6-42.6

iron 115 range 38-169

Westergren sed rate 2 range 0-15

Ferritin 203 range 30-400

C reactive protein, quant <1 range 0-10

My question. I've been riddled with very constant morning aches, pains and nerve issues. They tend to mildly resolve some during the day. My muscles tendons and ligaments are very very slow to recover and it seems as if for the past year I've been "injury prone" could this be hormonal? Or a side effect of methimazole, even at these lower doses? And I've been mostly in range but leaning to the hypo side of things before I adjust meds. So definitely have experienced a lot of hypo symptoms too during this journey.

Also would appreciate any advice on what to expect from here? I'm self treating at this point as the endocrinologist I was seeing kept me on 30mg methimazole daily until I was so far below range with FT3 and FT4 and my TSH was way over range. I could barely move. I'm in the states and have a way to get prescriptions for compounded methimazole and can order any blood work I want as it's private.

Thank you!

[PurpleNails Administrator]

FT4: 1.38 (Range 0.82 - 1.77) 58.95%

FT3: 2.7 (Range 1.81 - 4.06) 39.56%

Looking at FT4 & FT3 I would say there is room to allow levels to increase, with most feeling best with FT4 in top 3rd of range & FT3 over the mid point.

You have hypo sounding symptoms so it may improve if you reduce methimazole further. We use carbimazole in UK the smallest pills are 5mg. Many split them using a pill cutter or begin to take every other day.

20,000i/u of vitamin d3 with K2- how often ? Have you monitored levels?

Do you have folate, B12 levels tested?

Can you check the antibodies results? The name / ranges may be incorrect. Tg antibodies tend to have higher threshold (TRab tends to have very low range)

Anti thyroglobulin antibodies <1 negative

Anti thyroid peroxidase Ab 200 range <9

Thyroid peroxidase TPO Ab 150 range 0-34

A repeat TRab / TSI antibody is best, if negative it a good sign of remission.

[Woodsman4 in reply to PurpleNails]

since the most recent labs in December I reduced methimazole from 5mg daily to 3.75 mg daily. Currently at week 2 of that reduction.

I take 10,000 IU daily of D3 through summer and 20,000 IU daily in winter. I have my D levels checked every 6 months. the last test was in August. Vitamin D was 74.1 range is 30-100. I will be retesting vitamin D in 3-4 weeks when I run thyroid labs again.

I have not had folate or b12 tested. I can test that with my next labs too.

I will do a Trab/TSI test again in my next labs as well.

[pennyannie]

Hey there again:

Ok - so have you eased up your physical exercise regime :

It looks like you are still dealing with Graves as you Thyroid Stimulating Immunoglobulin antibodies are positive and over range - though we have never had a reading for a TSI before ?

You were diagnosed on TRab antibodies - have these been rerun ?

I don't understand why you have switched antibody tests - and now we also have positive and o/range TPO antibodies - can you please verify what you have typed is correct.

So. over range and positive TPO antibodies is indicative of Hashimoto's another AI disease -

which systematically attacks the thyroid gland and causes erratic own thyroid hormone production - and ' swings ' in T3/T4 levels and hyper / hypo symptoms - and this AI disease tends to systematically attack and destroy the gland, ultimately rendering you hypothyroid and needing to be prescribed thyroid hormone replacement.

This is not unusual as when the thyroid comes under attack from the immune system several different sets of antibodies maybe found positive and over range - but Graves is the only AI disease considered life threatening if not medicated so takes precedence and treated first.

Your T4 is tracking at around 59% with your T3 at around 39% - ( please check these % yourself - I haven't a calculator and well past my best before time of day )

so if you are still keeping up your physical training regime these symptoms you mention above may well be because your T3 is not high enough in the range to support all your activities and with too low a level of T3 - your recovery from exercise will be slowed - and the more you push yourself the worse you will feel until such time as your are optimally medicated - and not taking any AT drugs.

I'm pleased your eyes seem to have calmed back down - that's a big tick in the box.

You might like to read around on the research and suggestions of Dr Izabella Wentz as she has Hashimoto's and is widely followed and respected by other forum members - thyroidpharmacist.com

[Woodsman4 in reply to pennyannie]

I was diagnosed in August of 23 with TRab thyrotropin receptor Ab 25.6 range 0-1.75.

In August of 23 my thyroglobulin Ab was <0.9 range <=4.0

The other antibodies were tested because I was experiencing hypo symptoms despite reducing my methimazole from 10 to 7.5 to 5 over a couple months.

I am still keeping up with my weightlifting routine but am doing nothing more then walks as far as cardio goes.

I've definitely experienced hypo and hyper swings over the past 6 months the. I had thyroid labs back to back 6 days apart in the first week of December. Same lab, morning draws and one lab FT3 was 1.39 then 3.74 the next week range 1.81-4.06

I'm very thankful for my eye improvement.

Is there a way to confirm if I have hashimotos? Or could I just be experiencing hypo symptoms from reducing methimazole too slowly if I'm moving towards remission from graves at a faster rate?

[pennyannie in reply to Woodsman4]

The TPO antibodies over range are a positive for Hashimoto's Auto Immune Disease -

I'm not sure what all these other antibody reading are -

A TSI has been run which is another Graves antibody and appears over range - but I've just now read it can be high in Hashimoto's as well -

I think I'd like to see a TRab antibody reading so to compare with your first TRab antibody blood test - and compare like with like - as nothing appears clear cut -

though your TSH is telling me this first phase of Graves is over :

I don't think you are on enough AT medication to control the ' swings ' in symptoms and T3/T4 levels that come with Hashimoto's -

Hashimoto's is not treated until such time as your thyroid is less productive / damaged and you are dealing with symptoms of hypothyroidism and then the first line treatment in mainstream medical is T4 - thyroid hormone replacement.

First we need to have a period of time without any drugs to see how well your thyroid can restore and reset itself.

A euthyroid ( well thyroid ) would see a TSH at around 1.20/50 with a T4 around 50% through its range with the T3 tracking just behind at around 45% through its range.

[pennyannie in reply to pennyannie]

I just read your running tests again in a few weeks time - please also include your core strength vitamins and minerals -

I am a woman - well past menopause and on most UK ranges aim to maintain my ferritin at around 100 - folate around 20 - active B12 125 ( serum B12 500++ ) and vitamin D at around 125.

[Woodsman4 in reply to pennyannie]

As I understand, aren't the TPO antibodies present in both graves and Hashimoto's?

My thyroid has been in a euthyroid state for most of this reduction in methimazole. Maybe these labs will paint a clearer picture

August 8 10mg MMI daily

FT4 1.38 range 0.82-1.77

FT3 2.88 range 1.81-4.06

TSH 1.44 range 0.45-4.5

September 25 7.5mg MMI daily

FT4 1.82 range 0.82-1.77

FT3 2.86 range 1.81-4.06

TSH 0.901range 0.45-4.5

October 29 7.5mg MMI daily

FT4 1.31 range 0.82-1.77

FT3 2.35 range 1.81-4.06

TSH 2.76 range 0.45-4.5

December 4 6.25mg MMI daily

FT4 1.53 range 0.82-1.77

FT3 3.74 range 1.81-4.06

TSH 2.76 range 0.45-4.5

December 10 5mg MMI daily

FT4 1.43 range 0.82-1.77

FT3 1.39 range 1.81-4.06

TSH 1.93 range 0.45-4.5

December 27 5mg MMI daily

FT4 1.38 range 0.82-1.77

FT3 2.7 range 1.81-4.06

TSH 1.68 range 0.45-4.5

After December 27 results came in I switched to 3.75mg MMI daily

[pennyannie in reply to Woodsman4]

No - not necessarily - but as I wrote before there can be an overlap of sets of antibodies when the thyroid is under attack from the immune system -

If Graves found positive the treatment is with the AT drug -

There is no treatment for Hashimoto's until such time as the thyroid becomes too damaged to continue producing enough thyroid hormones daily and the patient dealing with symptoms of hypothyroidism.

Generally if Graves and Hashimoto's are found positive the treatment is with a Block & Replace -regime whereby the AT drug is at a dose to fully block the thyroid hormones and a measured dose of T4 thyroid hormone replacement is prescribed alongside the AT drug so the T3 and T4 do no all too far through the ranges.

Apart from August 8th - the 5 other TSH readings are above the range I typed.

I'm sorry I need to go now - and can pick this up again tomorrow.