Feeling awfully hypo

[MonikaKay]

Hello. I was diagnosed with Hashimoto's last April, on 50mcg of Synthroid (levothyroxine). I should be on a higher dosage but can not tolerate it.

When I was first diagnosed they had me on 100mcg and I was over medicated. My tsh dropped from 15 to 0.8 in one month and I ended up at the hospital with sinus tachycardia of 150.

Endo lowered me to 50 but would like me on are least 75. I've tried a few times and the results are always the same, my pulse goes up after two weeks and I have awful hyper symptoms. Heart has been checked numerous times and no issue was found.

I was doing pretty decent until three days ago I felt like I was flu symptoms. My throat was hurting, my head, my joints. The next morning all the pain was gone and replaced with horrible fatigue, slow pulse (58-70)

I feel like I'm breathing too slowly (just had lungs, (unrelated issue) checked and everything was fine) My sp02 is between 90-97.

I'm so lost as what options I have. Endo won't give me different medication. I am gluten, soy, sugar, dairy, eggs, alcohol, caffeine/coffee free. I drink 2-3 litres of water a day.

I will add that I was diagnosed with a panic/anxiety disorder 10 years ago, which of course came back with a vengeance when I went hypo. I do take 0.25mg of Xanax a day for that.

Could I be having a autoimmune flare? I have not changed my dosage and my last labs showed a tsh of 6, however my free T3 and free T4 were both in range (not optimal but in range) My antibodies changed, my Anti-TPO is still >1300 but my anti-tg went from 588 to 221.

I was anemic but after being on ferrous sulfate I'm in mid range now. I do have a vitamin D deficiency but have been supplementing. B12 is in range but on the lower end.

Any advice, suggestions would be highly appreciated

[shaws]

I am sorry you are suffering and it would be kind if the doctors would prescribe a combination of T3/T4 but they wont prescribe T3 now. Research by several researchers have shown that many do well on a T4/T3 combination.

Some members source their own.

Tick off the symptoms you have and you will find you have probably had symptoms of undiagnosed hypothyroidism. Previously before blood tests we were diagnosed and given NDT (even on a trial basis) if we were symptomatic.

I believe (and am not medically qualified) that they insist on treating the 'results' and not our severe clinical symptoms.

If your B12 was on the low side GP should test for intrinsic factor to ensure you don't have pernicious anaemia before supplementing with sublingual B12 methylcobalamin tablets.

thyroiduk.org.uk/tuk/about_...

With a TSH of 6 you should have had an increase in thyroid hormones. Ones that make you feel much better but we now know these will not be prescribed. Many have sourced their own.

[MonikaKay in reply to shaws]

Thank you very much for your reply! I'm on my third Endo and they won't prescribe me t3 since it's "in range"

I'm so very frustrated

[shaws in reply to MonikaKay]

Please get a print-out of your results with the 'ranges'. We do not want 'in range' we want 'optimal' and that is where doctors make their biggest mistake unless they are hypo themselves or their family members.

For instance TSH means 'thyroid stimulating hormone' which rises when our gland is failing and as hormones are increased it reduces. It is from the Pituitary Gland - not the thyroid gland. Most doctors believe if TSH reaches within the range their job is done - No it isn't we need a TSH of 1 or lower with Free T4 and Free T3 in the upper part of the ranges.

In the Lords at Parliament last week there was a Debate about the cost of T3 and that many patients need it in order to feel well. So we hope that something positive comes out of it. The Lord did state that the cost had risen 6,000% so it does look as if the NHS is being ripped off. You may only need rises of levothyroxine if you convert well but you do need an optimum dose to bring TSH to 1 or below.

[SlowDragon Administrator]

Are you in UK or USA?

Can you get DIO2 gene test done - this may show you have genetic problem converting T4 to T3

thyroiduk.org.uk/tuk/testin...

Suggest you find an endocrinologist who will try adding T3 or NDT

[MonikaKay in reply to SlowDragon]

They have checked my reverse t3, never heard of the one you mentioned but I'll look into it.

Reverse T3 is 0.14 ng/ml (range 0.09-0.35)

FT3 is 5.21 pmol/l (range 3.50-6.50)

FT4 is 13.38pmol/l (range 11.50-22.70)

[SlowDragon Administrator in reply to MonikaKay]

Your FT4 is too low, showing you need dose increase

If B12 and folate are too low this can be a problem

Supplementing with a good daily vitamin B complex - one with folate in, not folic acid- eg Igennus Super B or Jarrow B right.

If you have low B12 symptoms you may also need sublingual B12 lozenge or B12 spray

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

[shaws in reply to MonikaKay]

This is the info re getting a blood test for a genetic condition which means we cannot convert T4 into T3.

thyroiduk.org.uk/tuk/testin...

[jgelliss]

My Sympathy and prayers to you . No one should have to struggle to feel well . Your Dr I'm afraid does not understand how to dose you . Panic attacks breathing problems etc. are Hypo symptoms . You don't Lower thyroid meds . Did he bother to run labs on your Frees ? If you can Please Run don't walk to a Dr/Endo who understands how to dose you by symptoms and labs last . Your diet is Great . You might want to run labs with your nutrients as well . Vitamin "D"/K2, B-12/folate , Selenium and ferritin .

Best Wishes on your next steps .

[MonikaKay in reply to jgelliss]

Thank you for your kind words. The issues is that with raised t4 dosage I develope sinus tachycardia and end up in the hospital. Happens every time without fail.

My D is low but I'm working on it, B12 is 622 but I have read that optimal is around 800. Selenium in range, ferritin low but in range (I was very anemic a year ago and have been supplementing with ferrous sulfate)

I have also noticed that my issues usually are severe when I'm ovulating and pmsing (hyper swings) then I crash. I may look into sex hormones next and have my adrenals checked with a 4 point saliva test.

[jgelliss]

MonikaKay

Thank you so much for your updates . Your doing all the right things . Testing your nutrients hormones and adrenal/cortisol levels are Spot On .

Wishing you better days a head .