Locked down and need assistance with levels

[PaulLT]

I have been Hypo for the last 16 years on a very high dose of 200mcg Levothyroxine daily.

After a recebt test which showed normal TSH, normal T4 and high T3 my doctor stopped my levothyroxine and put me on anti tyroid.

After 5 weeks i felt so bad and exhausted i have stopped the anti thyroid and gone back on half my previous levothyroxine.

And although far from 100% i feel much better than I did.

Unfortunately im currently locked down with covid in the Philippines and cant get to an endocrinologist, and very sceptical on the doctors advice here.

Can anyone throw anylight on this for me. Most greatful for any insight or help

[pennyannie]

Hello PaulT and welcome to the forum :

Do you have a diagnosis of Hashimoto's AI Thyroid Disease as that could explain your results having gone a bit haywire.

Has this ever happened before as if you are hypothyroid you can't become hyperthyroid in the true sense of the word.

You can become over medicated, can you post the results and ranges of this blood test, and anything else that was tested and include the ranges.

Anti thyroid drugs, are generally only prescribed if you have a diagnosis of Graves Disease and have a positive blood test for the TSI / TR ab antibodies, has this test been run and you have this medical evidence ?

[PaulLT in reply to pennyannie]

Hi. No i had several tests run . The only ones durectly related to thyroid were T4 TSH and Free T3 the T 4 and TSH were within the normal range but the free T3 was quiet high.

I have never known tests to be out before, i was always at the high end of the T3 once they got the levothytoxine balanced and was always that on every test until this one.

When i was first diagnosed as Hypothyroid i was told that is was autoimune and that my levels were some of of the lowest ever seen in the local hospital.

But here they havent run any test for graves.

The only other things that were unusual was a higher white blood count and hig colestorol

[SlowDragon Administrator in reply to PaulLT]

So autoimmune thyroid disease is Hashimoto’s

High cholesterol is strongly linked to being hypothyroid and usually improves as levothyroxine dose is increased

As you have Hashimoto’s, it’s possible to get Hashimoto’s flares where, as thyroid cells break down due to autoimmune attacks, you get temporary slight increase in thyroid hormone levels...but it soon passes

Looks like your test might’ve coincided with Hashimoto’s flare .....and Doctor has responded inappropriately

[PaulLT in reply to SlowDragon]

Do you know if a flair up in hashimotos , also cause severe leg muscle pain, cramps and leg twiches, as that is what i orinally consulted the docter for

[SlowDragon Administrator in reply to PaulLT]

Low vitamin D EXTREMELY common with autoimmune thyroid disease (hashimoto’s)

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

[PaulLT in reply to SlowDragon]

Do you know if a flair up in hashimotos , also cause severe leg muscle pain, cramps and leg twiches, as that is what i orinally consulted the docter for

[SlowDragon Administrator in reply to PaulLT]

Leg pain often low vitamin D

Muscle twitches low magnesium

Low magnesium and low vitamin D often appear together

Vitamin D ....minimum level needed as approx 80nmol (40ng/ml)

Links about importance of magnesium when taking vitamin D

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

[PaulLT in reply to SlowDragon]

I will try to find out if I can get a full vitamin and mineral check locally.

Thank you, so helpful

[pennyannie in reply to PaulLT]

So I see SlowDragon has detailed you :

The AT drugs will have blocked your own thyroid production so as they leave your system your own thyroid production will come back on track.

You may find, eventually, that you will need a higher level of T4 to compensate for this attack on your thyroid as with every attack, the gland becomes a little damaged and less able to support you as it once did.

[PaulLT in reply to pennyannie]

Thank you so much. You have both been so helpful and reasuring, I was fairly confident that there was a misjudgement and that I should go back on levothyroxine, but needed that confirmation. However i hadnt realised with Hashimotos you could get futher attacks or that Vimim D and B12 were common deficiencies.

Im a lot more confident now on what I need to do and less relient on a very nice and helpful , but provincial doctor with little experience in this

Thank you so much

[pennyannie in reply to PaulLT]

I do not have this disease but read of people who are having one of these " hyper swings " stop their thyroid hormone replacement for a few days until they feel the swing swinging the other way and then reintroduce the Levothyroxine again as symptoms dictate.

Thank you for the thank you - glad it made some sense :

[SlowDragon Administrator]

Sounds like massive over reaction by doctor

Do you have results from before stopping levothyroxine?

Possibly just needed small reduction in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels can lower TSH

Many hypothyroid patients need to supplement virtually continuously to maintain optimal vitamin levels

Add results and ranges if you have them or come back with new post once you get results

thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you did tests?

[PaulLT in reply to SlowDragon]

Yes i had fasted 12 hours before the test which was done around 9am.

Yes i have a copy of the results

T4 130.34 nmol/L

TSH 0.59 mIU/L

Free T3 10.5 pp/ml

I haven't had any vitim checks done at all

[SlowDragon Administrator in reply to PaulLT]

Sorry can you add the ranges on these (figures in brackets after each result)

Getting vitamin levels tested next step

TSH doesn’t suggest hyperthyroid

Can’t comment on Ft3 or T4 without ranges

Was last dose levothyroxine 24 hours before test?

[PaulLT in reply to SlowDragon]

Free T3 range 1.4 - 4.2

T4 Range 66 - 181

TsH range 0 .03 - 4.2

My last Levothroyine intake would have been about 25/26 hours prior to the test

[SlowDragon Administrator in reply to PaulLT]

So Ft3 was over range ....but T4 within range and TSH well within range

Suggest you get thyroid levels repeated ....likely very hypothyroid now ..

[SlowDragon Administrator in reply to PaulLT]

Bloods should be retested 6-8 weeks after each dose change in levothyroxine

How long have you been back on 100mcg?

Guidelines on dose by weight of levothyroxine is 1.6mcg per kilo of your weight

[PaulLT in reply to SlowDragon]

Actually i had been on 200mcg for about 15 to 16 years ( high dose) but that kept me in range on all 3.

I have now self medicated on 100 for 2 weeks and two days ago i increased 150. Im assuming i was originally needing to make a slight reduction. From 200 so hopinhg 150 maybe somewhere near where I should be

I need to take a boat trip to a nearby island to get tested which is a little complicated at the moment so i was thinking to go in about 2 weeks so i will get a better idea of where my levels are. Im so grateful for your feed back which is confirming all my thoughts

[PaulLT in reply to SlowDragon]

Im 81kg so that would be a guidline around 130 which is quite a bit lower than I was on previously, but around what the expected when I first start mefication years ago

[PaulLT]

Im not sure. I was concerned , but was unable to get any kind of second opinion, the doctor is only a local doctor but told me he had spoken with a colleague in Manila who advised this, whomm i assumed wasan endrinologist, but im now thinking maybe not

[humanbean]

After a recebt test which showed normal TSH, normal T4 and high T3 my doctor stopped my levothyroxine and put me on anti tyroid.

That doctor (or whoever he consulted) was completely incompetent and could have put you into a life-threatening coma.

If the only result you had that was out of range was the T3 then all that you needed to do was to reduce your Levo dose slightly.

Another possibility, if you were getting symptoms you thought were caused by that high T3, is that you could have stopped taking Levo for a few days or a week or two, waited until you felt a tiny, tiny bit hypo then gone back on to your Levo at a slightly lower dose.

[PaulLT in reply to humanbean]

Im really strict, and never miss or change my dose. This was the first time