Hypo to Hyper Thyroid issues

[Cassii]

Hi everyone 🙂 I've been Hashimoto under active for 25yrs and was on 225mg L-thyroxine. Recent bloods show i'm now Hypo and reduced meds 75mg to 150mg. My get up and go is down the toilet now. Has anyone had experience with this and what was the outcome?

[nellie237]

Hi Cassii,

Was that 75mcg drop all in one go?

[Cassii in reply to nellie237]

Hi Nellie237. Yes the GP dropped it in one go.

[nellie237 in reply to Cassii]

Whoa, that seems really excessive. Do you have your blood results to post, so that members more experienced than me can help/advise?

[Cassii in reply to nellie237]

I have fasting bloods to be taken this Wednesday along with ECG .

[fuchsia-pink]

Do you have your last actual blood results? - you are legally entitled to them, without giving a reason (although it's usually easiest to say "for my records" or register for on-line access). You are ONLY over-medicated (not "hypER" if you are actually hypO) if free T3 is over-range - not if free T4 is over or TSH is suppressed.

But because you have Hashi's you may actually be having a (temporary) Hashi's "flare" - in which case a long-term reduction in meds is the last thing you need.

And a reduction of 75 mcg a day is HUGE - far more usual to go up and down in 25 mcg doses. So I'm not at all surprised you feel rough.

Can you get another blood test - early morning certainly before 9am - with 24 hours from our last levo - and see how bad things are now? I know we usually recommend 6 - 8 weeks on a new dose, but your reduction has been so severe you probably can't wait that long. Important that they test more than TSH and, if you are lucky, free T4, Try and get TSH, free T4, free T3 and key nutrients - ferritin, folate, vit D and B12. I've had some success by saying that these are the tests recommended by Thyroid UK.

Good luck x

[Cassii in reply to fuchsia-pink]

Free T4 31.0 TSH <0.1 Also get vitB12 injections

[fuchsia-pink in reply to Cassii]

We don't have the lab range - but free T4 is probably quite a long way over. Next time, it's really important to get free T3 done. Looks like a "Hashi flare" to me - which if it's now over, explains why you feel so awful. If you have any "spare" levo [I'm a huge fan of accumulating a bit of "extra"] I'd go back up to at least 125 mcg after the test on Wed x

[SlowDragon Administrator in reply to Cassii]

Had you taken levothyroxine before blood test?

If yes…Ft4 is false high

Only test early morning, and last dose levothyroxine 24 hours before test

[SlowDragon Administrator]

Bloods should be retested 6-8 weeks after any dose change

Typically dose would only be decreased by 25mcg maximum

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Or especially after a dose reduction in levothyroxine

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

[LilacandMint]

Your meds should have been reduced gradually by 25mcg with testing every six weeks. A drop from 225mcg down to 150mcg is a lot! No wonder you feel so awful. GPs have no clue. Who suggested the drop - your GP or an Endo? Did your GP even ask an Endo for an opinion. Ask to be referred to an Endocrinologist. Also ask for your calcium, vitD and parathyroid hormone (PTH) levels tested. Over medication of levothyroxine - 225mcg is very high- to control Hashimoto's can cause raised calcium in the blood which causes all sorts of horrible symptoms affecting your bones, bowels, major organs and brain. If it gets too high the parathyroids are triggered which control calcium levels and you can get high PTH. Low vit D makes you feel horrible too. I have hyperparathyroidism on top of Hashimoto's. Unfortunately calcium levels and PTH are not routinely tested when they should be. I've also got a retrosternal goitre which only showed up with a CT scan.

[pomeranion in reply to LilacandMint]

What makes you think you have hyperparathyroidism? If you do you need ultrasound and CT to diagnose and measure possible adenoma. Only cure, removal. Had mine removed 1-21-2021. Undiagnosed for 8years Now have osteoporosis and shoulders fractures and spinal degradation. Please see Endocrinologist as soon as possible and have calcium and PHT levels tested.

[LilacandMint in reply to pomeranion]

All tests and scans done. Hyperparathyroidism confirmed 2020. On urgent surgical list - hopefully before the summer.

[pomeranion in reply to LilacandMint]

You have relieved my anxiety. Thank God you have been professionally diagnosed.I never really suffered symptoms. Only lab tests for elevated calcium levels finally noticed by Endocrinologist after 8 years with my GP doing nothing. Then PHT testing and subsequent testing diagnosed 1 parathyroid adenoma. Changed long time GP after him treating my family for over 30 years. The parathyroid surgery took about 15 minutes and I was able to go home that same night. Just a small scar almost unnoticeable now. Calcium and PHT leveled off almost immediately. I wish you good luck and please keep us posted.

[LilacandMint in reply to pomeranion]

Mine will be more complicated - total thyroidectomy and removal of a retrosternal goitre which is about the size of a small orange. Surgeon thinks the rogue parathyroid is there.

[pomeranion in reply to LilacandMint]

I'm so sorry to hear about the complications. I didn't mean to minimize your situation when conveying my experiences. Try to stay positive and keep your stress levels low.That is the most important lesson I've learned. It wreaks havoc on our health. Best wishes.

[debra_bill]

Been there & done that. Stand your ground and refuse to take such a drop in one hit. If you use the meds you have, are they really going to refuse a prescription if you go back a bit early for a renewal? Do be prepared to be firm.