No idea what to do: Hi I am new and diagnosed... - Thyroid UK

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No idea what to do

Xanthe119 profile image
11 Replies

Hi I am new and diagnosed hypothyroid 4 yrs ago. Dose recently been moved from 150mcg levothyroxine and 10mcg T3 to 150mcg levothyroxine. System feels like it's crashed with upset stomach, joint pain, tiredness, weight gain, pins and needles, aches in backs of legs.

Was endo right to take T3 away despite it helping with symptoms? Results below on dose without T3. Thank you in advance.

Aug 2017

Serum TSH 4.6 (0.2 - 4.2)

Serum free T4 14.1 (12 - 22)

Serum free T3 3.3 (3.1 - 6.8)

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Xanthe119 profile image
Xanthe119
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11 Replies
SeasideSusie profile image
SeasideSusieRemembering

Xanthe119 Absolutely not, your endo was wrong to take away your T3 but they're doing it to save NHS money due to it's extortionate cost. I do believe that if you have been prescribed it and you've shown a need for it then it shouldn't be taken off you. I think either shaws or Clutter has information about that.

**

Some of your symptoms can indicate low nutrient levels, have you had the following tested, if so please post results, if not please ask for them to be carried out:

Vit D

B12

Folate

Ferritin

**

Serum TSH 4.6 (0.2 - 4.2)

Serum free T4 14.1 (12 - 22)

Serum free T3 3.3 (3.1 - 6.8)

Are these results on 150mcg Levo only, after your T3 was removed? If so, how long after the change in meds? You are very undermedicated, your TSH is over range, your Free T4 low and your Free T3 barely scraped in at the bottom of it's range.

Xanthe119 profile image
Xanthe119 in reply toSeasideSusie

Hi results were with me just on 150mcg levothyroxine 2 months after no T3. I will post other results now

SeasideSusie profile image
SeasideSusieRemembering in reply toXanthe119

So you are very undermedicated, and it looks like you could do with an increase in Levo and probably have that bit of T3 added back in again.

No the endo was wrong and had done the equivalent of reducing your levo by 30-40 mcg. If your t3 was removed, you should have had an increase in levo to make up for it. Your free t4 and free t3 is right at the bottom of the range and your TSH is far too high (should be under 1, showing that you are very, very undermedicated.

Clutter profile image
Clutter

Xanthe119,

You are undermedicated to have TSH 4.6 and FT3 is low in range. Endo should have increased Levothyroxine dose if T3 was being withdrawn. Did endo say why T3 was withdrawn?

Xanthe119 profile image
Xanthe119 in reply toClutter

Hi endo said there is no evidence to say it helps treat hypothyroidism and results were 2 months after T3 was withdrawn

Clutter profile image
Clutter in reply toXanthe119

Xanthe119,

Lack of evidence doesn't mean there is no benefit and you were feeling benefit. BTA have said that patients doing well on T3 should not have it withdrawn but I don't know how much weight that will carry with an endo who doesn't believe in it. See the BTA FAQS about switching from T3 british-thyroid-association...

As I said earlier, your endo should have increased your Levothyroxine dose to compensate for withdrawing T3.

Xanthe119 profile image
Xanthe119 in reply toClutter

Hi my endo said he did not support prescribing T3, is it a good idea to see a different endo?

Clutter profile image
Clutter in reply toXanthe119

Xanthe119,

If you want T3 reinstated you'll have to unless you buy your own without prescription and self medicate.

It is probably worth seeing how you do once you are optimally dosed on Levothyroxine.

Xanthe119 profile image
Xanthe119

Other results

Ferritin 67 (30 - 400) taking ferrous fumarate for iron deficiency once a day

MCV 76.6 (80 - 98)

MCHC 384 (310 - 350)

Iron 11.4 (6 - 26)

Transferrin saturation 14 (10 - 30)

Folate 2.2 (2.5 - 19.5) taking folic acid for folate deficiency

Vitamin B12 248 (180 - 900)

Vitamin D total 60.3 (50 - 75 vitamin D suboptimal) taking 6000iu vitamin D

All levels after supplementing

linsoul profile image
linsoul

Hey Xanthe119, First of all you need to gain an understanding of what you are taking. Most thyroid "specialists" prescribe levothyroxine. It's a standard cookie cutter approach with no regard most of the time for symptoms or age. Levothyroxine is medical T4 which is given because T4 converts to active T3. That's the hope, that it will indeed convert. The problem is most people, especially if you are older, do not convert so all you have is T4 with no conversion to T3 so T3 is still very low. In essence, no balance, so the thyroid cannot perform the way it was designed to perform. You probably need a combination T4/T3 which your doctor can prescribe through a compounding pharmacy (customized prescription) or he/she can prescribe a natural dessicated thyroid med. From what you have shared, I doubt your doctor will do either. You may need to find someone who is holistic or non conventional who will see the bigger picture. Hope this helps and you are able to successfully move forward.

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