Need help with self medication : Hello everyone... - Thyroid UK

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Need help with self medication

Maty_82 profile image
25 Replies

Hello everyone, I'm new to the forum and I hope to receive advice. About 6 months ago I suddenly changed: I started losing my memory, thinking difficulties, I developed very strong water retention, losing my hair and gaining weight quickly by eating very few calories. In the meantime I had a very strong infection of all the respiratory tracts, eyes and meninges. A few months ago, the worst thing that ever happened to me: I developed a horrible neuropathy in the legs, the strongest pains of my life, and I can no longer live without a painkiller, no doctor has ever understood the cause of this neuropathy.

A month ago I decided to get my thyroid tests:

TSH: 3.1

FT4: 7.7

FT3: 2.71

anti tpo and anti tg antibodies present.

I've been taking exams every year since 2004, and I've always had ft3 and ft4 below the range, but tsh has always been close to 1.5, this is the first year tsh has risen. In the past, however, I have never had strong symptoms of hypo, just a little fatigue and a lot of digestive problems

No doctor wants to cure me because in Italy if your TSH is less than 4, you have no thyroid problems, it's just a bit of stress, "your thyroid works perfectly, take a vacation" said my doctor, but i think i have haschimoto because of antibodies

I decided to medicate myself starting with 50mg of t4 per day, and then I honestly don't know what to do, whether to increase the dose or add t3. The only drug I can't buy is dried narural thyroid.

Here on the forum I'd love to hear from you guys:

What do you think of my blood values?

What meds or drug combos could help me?

can neuropathy be a consequence of hypothyroidism?

thank you all

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25 Replies
mintgreenish profile image
mintgreenish

Hi Maty82. You have come to the right place . Soon the experts will be by to advise you. Cant speak highly enough about them. Good luck!

SeasideSusie profile image
SeasideSusieRemembering

Maty_82

What do you think of my blood values?

Can you add the reference ranges that came with your results please, we can't interpret them without the ranges and these vary from lab to lab.

anti tpo and anti tg antibodies present.

This suggests autoimmune thyroid disease, known to patients as Hashimoto's. This can cause nutrient deficiencies or low levels.

Have you had key nutrients tested, if not please do so and post results with reference ranges, plus units of measurement for Vit D and B12 (neuropathy can be low B12):

Vit D

B12

Folate

Ferritin

Maty_82 profile image
Maty_82 in reply to SeasideSusie

Thank you for answer, here you have more info:

Vit b12 950*. (300-900)

Folate. 20*. (4 - 12)

Ferritin 217.* (15 - 125)

Vit d. 60 (30 - 70)

Tsh 3.1. (0.27 - 4.2)

Ft4. 7.7.* (9 - 17)

Ft3. 2.71. (2.0 - 4.4)

SeasideSusie profile image
SeasideSusieRemembering in reply to Maty_82

Maty_82

Are you supplementing for any of your nutrients?

Tsh 3.1. (0.27 - 4.2)

Ft4. 7.7.* (9 - 17)

Is this test before or after you started taking Levo?

FT4 below range with TSH normal, low or minimally elevated suggests Central Hypothyroidism which is where the problem lies with the pituitary or the hypothalamus rather than the thyroid. Discuss with your GP this possibility. Here in the UK many doctors have little knowledge of Central Hypothyroidism, I don't know if doctors in Italy are more aware.

Maty_82 profile image
Maty_82 in reply to SeasideSusie

this test is before taking t4

what is the treatment for central hypothyroidism?

I have antibodies, and this sounds like haschimoto

SeasideSusie profile image
SeasideSusieRemembering in reply to Maty_82

what is the treatment for central hypothyroidism?

Levothyroxine.

SlowDragon profile image
SlowDragonAdministrator in reply to Maty_82

please add actual antibodies results and ranges

Are you currently taking any replacement thyroid hormones

Maty_82 profile image
Maty_82 in reply to SlowDragon

anti tpo 42.4. (0 - 34)

anti tireoglobulina. 200 (0 - 115)

After this exam i started to take levothyroxine 50mg/day

Maty_82 profile image
Maty_82 in reply to SeasideSusie

Sorry i forgot to answer you that I only take a vitamin d supplement, the other values ​​are above the range without supplementation

Ajva profile image
Ajva in reply to Maty_82

you do need meds. Your t4 is low, t3 low and tsh high. I would increase to 75mg personally

jrbarnes profile image
jrbarnes

Although Synthroid is only sold in US and Canada they have a website which explains dosing and cautions. synthroidpro.com/dosing I do not take this brand but it may have some useful information.

helvella profile image
helvellaAdministratorThyroid UK in reply to jrbarnes

Synthroid is sold in several other countries as well!

But there is confusion. In New Zealand, for one example, it is under the Viatris umbrella. Whereas in the USA it is under AbbVie! (Mylan - a precursor of Viatris - used to make Synthroid for the rest of the world in their Canadian facilities.)

viatris.com/en-NZ/lm/New-Ze...

Viatris do list where they operate but they do not supply Synthroid in every country.

viatris.com/en

(They really don't make it easy to keep track!)

jrbarnes profile image
jrbarnes in reply to helvella

I did not know that! All these mergers, umbrellas, and buyouts of pharmaceutical companies are so hard to keep up with. Here in the US, Synthroid is so expensive that our health insurance won't cover it and have to pay out of pocket. Not sure how it is in other countries. It's not superior at all to the other brands so where they get the justification for their large prices I'm not sure.

helvella profile image
helvellaAdministratorThyroid UK in reply to jrbarnes

Big marketing and promotion budgets!

As I see it, one person might find Synthroid better for them than a specific other levothyroxine product. But another person could find almost any other product better for them!

Until the FDA forced re-applying for authorisation across all levothyroxine products, some companies indulged in "overage". That is, intentionally putting more active ingredient in than the label suggested.

I suggest the main reason for this was to produce tablets that were slightly stronger than any others. Thus, if anyone swapped make from Synthroid to another make, they might become under-dosed and feel worse - so demand return to "the branded one". And if they swapped to Synthroid, the small increase might make them feel slightly better - especially likely if they were a touch under-dosed.

It was in part to prevent such manipulation that overage was banned.

jrbarnes profile image
jrbarnes in reply to helvella

I sure wish they'd return to making them more potent! I read that the pharmaceutical companies that manufacture generic Levothyroxine use micronized Levothyroxine sodium so that it's better absorbed. Every time my old fashioned doctor tried to switch me from generics to Synthroid my FT4 levels would drop and I felt terrible. I've tried liquid and capsule Levo and shocked at how poor the absorption of tablet Levo is when compared to liquid and capsule forms. Since the introduction of these forms of Levo I think the pharmaceutical companies need to relabel the amounts of Levo in the tablets because doctors don't pay attention to bioavailabilty and surely under dose patients without taking absorption into account. To give someone a pill that is labeled 100mcg when the absorption is 80% and they're only getting more like 80mcg seems wrong especially when thyroid hormone is considered a "narrow window" treatment. Sorry I've gone off on a ramble on this member's post but it's been irking me recently when I think about how sub potent these companies are making their pills.

helvella profile image
helvellaAdministratorThyroid UK in reply to jrbarnes

However it is not clear whether the micronizing is the cause! That has been done, at least in some makes, since at least 1988.

Another issue is hydration. We usually consider levothyroxine sodium pentahydrate as the likely form within tablets. But in some circumstances it can lose water of hydration even to the point fo becoming anhydrous. And that loss of water molecules opens up tiny gaps which allow access to oxygen which can enter the structure and cause degradation of the levothyroxine.

This is why inappropriate use of desiccant pouches, or storing in a refrigerator or freezer is a problem!

jrbarnes profile image
jrbarnes in reply to helvella

In the US they dispense the Levo tablets into plastic bottles and I wonder if this affects the pills. The only thing I like about Euthyrox which was recently introduced to my pharmacy is that it comes in a blister pack. The liquid comes in ampules and capsules also in a blister pack. Seems to me the blister pack keeps moisture out much better than dispensing into plastic bottles and sitting around my house for three months. I live in a high humidity area too, especially in the winter it is very moist. Well, this is certainly something for me to consider. Thank you for the information!

helvella profile image
helvellaAdministratorThyroid UK in reply to jrbarnes

From afar, it is difficult to know, but I think that the pots, if supplied sealed, will be reasonably protected. But once opened, exactly as you say. And, if dispensed from a large supply, who knows how bad that might be?

Blister packs do seem better. (Shame about the plastic waste they contribute...) And they are standard for levothyroxine and many other medicines in the UK.

jrbarnes profile image
jrbarnes in reply to helvella

You're correct about the waste. Over the past two years I've accumulated nearly 50 or more plastic medicine bottles just trying different brands and such. They're in a box in my closet.

Auders profile image
Auders in reply to helvella

that is outrageous practice! Totally unethical, unbelievable really grrr!

greygoose profile image
greygoose

anti tpo and anti tg antibodies present.

These antibodies are always present - even in people with no thyroid problems. But, are they over-range? They need to be over-range to show you have Hashi's. :)

Maty_82 profile image
Maty_82 in reply to greygoose

anti tpo 42.4. (0 - 34)

anti tireoglobulina. 200 (0 - 115)

Thanks 🙂

greygoose profile image
greygoose in reply to Maty_82

OK, so they are over-range, and you do have Hashi's. :)

Maty_82 profile image
Maty_82

thanks for the reply, I have already bought liquid t3, but I don't know whether to start immediately or wait for the t4 to return at least in range

what was your experience with t4 mono?

FancyPants54 profile image
FancyPants54

I would not add T3 yet. You need to slowly increase the T4, no more than 25mcg a time, but perhaps even half of a 25mcg tablet when you are feeling almost better. Each dose increase needs around 6-8 weeks to settle. Then you retest and make a decision based on your results. T3 is hard to work with. You need to see if you can get well on T4 only first.

I am hypo and under dosed because of experimenting with T4 and T3 and I have horrible neuropathy in my feet.

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