Just left my appointment with the Endo... - Thyroid UK

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Just left my appointment with the Endo...

CosmosCat profile image
7 Replies

The long anticipated appointment with the Endo (Lewisham Hospital) just ended.. it was an anticipated dis-appointment.

All my blood tests are normal (within range) so no other help is given. The only important thing is TSH and that is low. I said that TSH doesn't say much at all, and that it's the free T3+4 that's important.

She even questioned the latest dose increase of Levothyroxine from 100 to 125 micrograms, as my TSH levels were so low before the increase (June 2016).

Note that no new blood tests were done for this appointment, last one was done in August..

She didn't seem to understand why I ate so many supplements (magnesium, zinc, selenium, iron, iodine, B12 and Vit D).

Absolutely no T3 because there's no evidence that it is beneficial, on the contrary, I can get osteoporosis and heart failure (all the old crap). It had not much to do with the price she said.

The fact that I have been overweight the last 20 years and have been fairly active (mainly walking and gym training) should ensure my bones are pretty strong and dense Didn't make any difference.

I asked if I self medicate with T3 could I get help with lab tests, she said no.

She had no suggestion about my tiredness, no deficiencies at all..

I asked about lack of cortisol but no I didn't show any signs of that. No offer of testing my cortisol levels to rule that out.

So I am left on my own like so many others, I will try my Greek T3:s and I will have to buy my own lab tests.

I am disappointed but at the same time, not at all..

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CosmosCat
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CosmosCat profile image
CosmosCat

Oh I forgot one thing, when I mentioned my low heart rate (59 bpm in resting) she said "that's great! I wish I had that".

I said it's good if you're extremely well trained but I am not!

SeasideSusie profile image
SeasideSusieRemembering

Unfortunately very typical CosmosCat .

If you post your results members can suggest how to start adding T3 and whether Levo needs adjusting. Remember that FT3 and FT4 need to be done from the same blood draw.

CosmosCat profile image
CosmosCat

My test results were as follows:

June: TSH 0.45 mU/L (0.2-4.0)

FT4 20.0 pmol/L (10-22)

FT3 4.2 pmol/L (3.3-6.00)

TPO antibodies where only taken in June and was 183.2 IU/ml (0.00-5.61)

After testing in June my dose of Levothyroxine increased from 100 to 125 micrograms.

August: TSH 0.32 miu/L (0.4-5.5)

FT4 20.6 pmol/L (10.3-24.5)

FT3 3.4 pmol/L (3.1-6.8)

The FT$ hasn't increased much efter the higher dose, and the FT3 has gone down and is not one third of the FT4 that it's supposed to be.

SeasideSusie profile image
SeasideSusieRemembering in reply toCosmosCat

CosmosCat Did you know that those high TPO antibodies mean that you have Hashimoto's (autoimmune thyroid disease)? If you did have you adopted a gluten free diet to help reduce the antibody attacks?

Are your vitamins and minerals at optimal levels ie

B12 very top of range, even 900-1000

Vit D 100-150nmol/L

Ferritin at least 70, preferably 100-130

Folate at least half way through it's range

Get all those optimal before adding T3 to make sure that conditions are right for conversion to take place.

Why are you taking iodine? Have you tested deficient? We shouldn't take it unless there is a known deficiency and I believe iodine is not good for Hashi's patients.

Your FT4:FT3 ratio is high at 5.97 : 1, ideally it should be less than 4:1 for good conversion. And your very low FT3 and reasonably high in range FT4 also show your conversion isn't good.

If you are going to self treat and add T3 what I would do - and I am not medically trained just someone with a similar problem and addressing it myself - is add 6.25mcg T3 to your current 125mcg Levo. See how it goes and after two weeks add another 6.25mcg T3. I would then stay at those doses for a couple of months and retest. Low and slow is the way to go when adding T3. Give it time for your body to adjust.

Aim for FT3 to be in the upper quarter of it's range, keep it in range, don't go over. You might need to reduce Levo. I was on 187.5mcg Levo when I started and had a way over range FT4 and my FT3 higher than yours, my ratio was a bit lower than yours. I am now on 100mcg Levo and 25mcg T3 with my FT3 in the top quarter of range.

Jazzw profile image
Jazzw

The iodine might not be a good idea. If you put "iodine" into the search box at the top you should find a number of posts about it.

How much iron do you take? Do you know your ferritin levels? Iron is needed for the conversion of T4 to T3.

CosmosCat profile image
CosmosCat

SeasideSusie and Jazzw, thanks for your responses.

I knew about Hashimotos, but it doesn't matter when it comes to treatment, it says just that's an autoimmune cause to it.

My status of vitamins and minerals is taken at different times but was:

June 2nd UK:

Serum B12 1193 (179-1162)

Serum Folate 4,8 (2,8-12,4)

Serum iron 21,5 (9-30,4)

Serum ferritin 46 (15-200)

June 14th Sweden:

Vit D 74 (50-178)

Cobalamin B12 532 (180-700)

Folate 22 (14-50)

I take (when remembering) 17 mg iron, 200 microgram Selenium, 25 mg zinc,188 gr potassium,300 mg magnesuim, 5000 ie vit D, 1000 mcgr B12 and 400 mcgr folic acid per day. Iodine (sea kelp) 150 mcgr, not every day. I've heard that iodine is essential for the rhyroid gland to work properly, and my hope is that it's not entirely dead yet..

in reply toCosmosCat

Cut out the iodine and see if you feel any different. The evidence on iodine is very confusing, but with Hashis it may make the autoimmune response worse, though no one is sure quite what is going on with it.

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