Symptoms: I am new here. Is it common for hypo... - Thyroid UK

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Ally406 profile image
17 Replies

I am new here. Is it common for hypo symptoms to still be unresolved on 175mcg levothyroxine? Also TSH and FT4 and FT3 has been very up and down? Diagnosed 2004, symptoms are hard stool, depression, hair loss, weight gain, tiredness, reduced tolerance to stress, heavy periods, dry skin, numbness in feet.

Thanks in advance

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Ally406
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17 Replies
greygoose profile image
greygoose

Is the TSH all that's been tested? It doesn't give very much information, at all. Your doctor really shouldn't be dosing by the TSH, because that way, the TSH will always be up and down! You need the FT4 and, preferably, the FT3 tested.

Yes, it's perfectly possible to be still symptomatic on 175 mcg levo. There could be all sorts of problems unresolved, like poor conversion, or absorption problems. But, you would need the FT4/3 tested to find them out. The TSH won't tell you. :)

Ally406 profile image
Ally406 in reply to greygoose

No TSH and FT4 and FT3 all been tested, everything is going up and down, so confused

Ally406 profile image
Ally406

I'm probably an anomaly in that case...never mind. Was hoping for answers and probably won't know what's happening to me.

Thanks

greygoose profile image
greygoose in reply to Ally406

No, you're not at all an anomaly. Why would you think that? It's quite common that people don't feel well on 175 mcg levo. It's not guaranteed to cure all!

So, can you give us your latest test results - TSH, FT4 and FT3, with the ranges? That will give us a better idea of what is going on.

Do you always have your tests done early in the morning, and fasting, leaving a 24 hour gap between your last dose of levo and the blood draw?

Have your antibodies been tested?

It might seem confusing, but that's because you're not joining up the dots, I imagine. When all the info is examined, I'm sure it will be as clear as day! :)

Ally406 profile image
Ally406 in reply to greygoose

Because the endo said I am an anomaly.

Nov 2017 (175mcg Levo)

TSH 0.03 (0.2 - 4.2)

FT4 21.3 (12 - 22)

FT3 4.2 (3.1 - 6.8)

TPO antibodies 889 (<34)

TG antibodies 277.5 (<115)

Jan 2018 (175mcg Levo)

TSH 5.7 (0.2 - 4.2)

FT4 14.8 (12 - 22)

FT3 3.3 (3.1 - 6.8)

I always have blood tests done that way (fasting, leaving 24 hours between Levo and blood draw and early morning)

greygoose profile image
greygoose in reply to Ally406

OK, that's good.

So, the endo said you are an anomaly because he has no idea how Hashi's works! None of them do. They just don't learn it in med school, so it is a constant source of wonder to them!

It's the Hashi's causing your levels to go up and down, that's all. Has your endo never mentioned the antibodies/Hashi's? He might call it Autoimmune Thyroiditis, if he mentions it at all.

Your immune system is attacking your thyroid, and sometimes causing the thyroid to 'leak' a little hormone into the blood. Which is why your levels sometimes rise, and then go back down again. There is no cure for Hashi's, but the best way to stop this constant flux of levels, is to get the TSH down to zero, and keep it that way.

Your TSH was very good in November! Although Your FT3 was much too low for good health. But that's because you are poor converter. A lot of Hashi's people are poor converters. And, what they really need to do is reduce the levo slightly, and add in a little T3. But, it's doubtful your endo would agree to that!

Now, in January, you're just plain under-medicated, and need an increase in levo.

People who have Hashi's/hypo often have low nutrients. Have you had your vit D, vit B12, folate and ferritin tested? If not, it would be a good idea to ask for that. :)

Ally406 profile image
Ally406 in reply to greygoose

Hi well I was on T3 very briefly and would like to add it back in. Previous endo prescribed me it.

Ferritin etc been tested, do I post?

greygoose profile image
greygoose in reply to Ally406

It would be a good idea, yes. :)

Ally406 profile image
Ally406 in reply to greygoose

December 2017

Ferritin 22 (15 - 150)

Folate 2.3 (2.5 - 19.5)

Vitamin B12 224 (190 - 900)

Vitamin D 30.5 (25 - 50 deficient)

Selenium 0.91 (0.89 - 1.65)

Zinc 12 (11 - 23)

Magnesium 0.82 (0.70 - 1.00)

Taking the following -

800iu D3 since December 2012

5mg folic acid since November 2016

210mg ferrous fumarate once a day since February 2017 for iron anaemia

Receiving B12 injections every 3 months, started Last week

greygoose profile image
greygoose in reply to Ally406

That's not enough D3. You'll never raise your level with that. But, doctor's pretend that's all they're 'allowed' to prescribe! Best to buy your own.

If you're taking vit D3, you should also be taking magnesium and vit K2 - MK7, the cofactors, which work with D3.

If you are having B12 shots, you really need to take a B complex, to keep the Bs balanced. Get one with methylcobalamin, rather than cyanocobalamin, and that will act as a maintenance dose during the gaps between shots.

If you also get one that has at least 400 mcg methylfolate, that will bring your folate up better than the horrible folic acid - it's better absorbed.

I think you probably need to take two iron tablets to bring your very low level up.

And it would be a good idea to take some zinc and selenium, too. A lot of tablets, I know, but the results will probably be worth it. They could greatly improve your conversion.

But, don't go starting all these new supplements at the same time. Leave a couple of weeks between each one, just to make sure they suit you. :)

Ally406 profile image
Ally406 in reply to greygoose

Hi yes I take vit D3 with K2 and MK7. Magnesium I take is a transdermal spray but haven't used it lately.

For some reason I have been getting sores on my lips after having B12 shots. Guessing it unmasked another deficiency?

Thanks

greygoose profile image
greygoose in reply to Ally406

I'm afraid I don't know enough about B12 shots to comment on that. But, you could try asking the question on the Pernicious Anemia forum, on HealthUnlocked.

Clutter profile image
Clutter in reply to Ally406

Ally406,

Endo saying you are an anomaly just means s/he doesn't know why your levels are fluctuating.

It's simple actually, your thyroid antibodies are positive for autoimmune thyroiditis (Hashimoto's) and it is this which is causing fluctuation. As the lymphocytes infiltrate the thyroid gland they destroy cells and as they die off they dump hormone into the blood stream causing FT4 and FT3 to rise and TSH to drop as happened in November.

When the infiltration stopped the hormone dump stopped too and T4 and T3 levels dropped and TSH rose as we see in January. Repeated infiltrations will atrophy the thyroid gland and the hormone dumps will stop as the thyroid becomes unable to produce hormone.

If you have sufficient Levothyroxine I would increase dose to 200mcg and retest in six weeks. Suppressing TSH <0.1 will reduce thyroid activity which will help reduce Hashi attacks. Supplementing 100-200mcg selenium will help support your thyroid gland too.

There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

Ally406 profile image
Ally406 in reply to Clutter

Hi my endo will not increase Levo

Clutter profile image
Clutter in reply to Ally406

Ally406,

You'd better change your endo then. No point in sticking with a doctor who doesn't understand why your thyroid levels are fluctuating and then won't increase dose when your blood tests show you are undermedicated.

Ally406 profile image
Ally406 in reply to Clutter

Well he seems to think I haven't been taking it, when I know I have

Clutter profile image
Clutter in reply to Ally406

Ally406,

If you've told him you are compliant and he disbelieves you and is withholding a dose increase because of that you should write to the head of endocrinology or the hospital PALS and make a complaint and ask to be referred to a different endo.

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