Just started self medicating. Need help with NDT dosing

First some background!

I have a autoimmune (not proven) skin disease (hidradenitis suppurativa) since many years back. At least 15. During that time I have had pretty bad blood works. Low HB and high inflammation markers. One major symptom has been fatigue. When at worst I needed two alarm clocks and 1-2h "snoozing" to get out of bed...

Then two years ago I found a diet. The autoimmune protocol. And jumped in with both my feet. 3 days later I woke up before the alarm went off and was at work 1.5 hours earlier without any effort :)

My bloodwork has also improved much since that with inflammation markers almost all "in range" now and perfect HB. Still, I have slowly begun to get more and more tired again. Last 6 months I'm back at snoozing almost an hour and incapable of getting out of bed. even though I can feel my inflammation is sooo much better still.

So, my dermatologist took my thyroid tests a few months ago (why no one has taken them before is a mystery...) and this is what came back.

TSH 2,1 mIE/L [0,3-4,2]

Free T4 12,2 pmol/L [12-22]

this was "normal" and I should be happy. However, anyone can see that the free t4 isn't good so I complained and got a follow up a moth later with my GP.

TSH 3,7 mIE/L [0,3-4,2]

Free T4 12,1 pmol/L [12-22]

Ok, not better... Here I start to really google and realizes that I have MANY symptoms matching hypothyroidism. Like:

Low body temperature (35.9-36.2 when I wake up)

slow pulse (48-52 bpm when I wake up)

very dry skin (but better than before I started with aip)

almost no outer third of my eyebrows left

Tired and dry eyes

Very tired in the morning

Sore throat rather often without being sick

Sometimes saying one word but thinking of another. Difficult finding the right word. Especially in complicated discussions.

Several hypo in my family. Including a brother diagnosed with hashimoto.

Sore feet (soles)

Trouble losing weight. I lost 13 kg when started on aip but then gained 8 of them back over the last year. But my diet is the same...

and more...

So, my gp said everything is normal. I complained and was able to get a fuller panel. this one was taken directly after 4 weeks of summer vacation...

TSH 3,0 mIE/L [0,3-4,2]

Free T4 13,2 pmol/L [12-22]

Free T3 4,9 pmol/L [3,1-6,8]

PTH 5,3 pmol/L [1,6-6,9]

TPO 21 IE/ml [< 35]

TRAK negative [<1,75]

Plasma calcium 1,26 mmol/L [1,15-1,33]

I have to admit that free T3 was higher than expected to me. And my GP called my thyroid "completely normal. Almost perfect". And all my symptoms "could be something else". Of course he did no effort to find the something else cause either.

I was a bit broken down about this but now 2 months later I have decided to test self medication to see if it could be the thyroid after all. I got thyro gold Natural Thyroid Solutions. I ordered the 150mg strength (lowest dose they have) and took the first pill a week ago. Already the morning after I woke up when the alarm went off and didn't snooze at all. Was at work an hour earlier than "normal". Felt so much more energy and the skin on my elbows have gotten smooth and my feet hurt less when I stand for long and I lost 2 kg water over 48h. The first night I woke up at 2am with a full bladder and the second night at 5am. That never happens normally and not since either so I guess I got rid of water trapped in my body...

Also my morning temp went up to 36,4 steady for 3 consecutive days. Then 36.2 then 36.1 the last two days.

My morning pulse is still higher with 58 bpm this morning. In the beginning of the treatment it was more like 62.

The thing is that I now feel more tired again. I got up this this morning but I could feel the old tiredness getting back. Also after work I feel no energy now. Earlier this week I still had energy left after I got home. Not much, but some...

Now. I suspect this means that:

1. I need thyroid hormone

2. After taking it my body has lowered its production leading to symptoms recurring.

Does this sound about right? If so, what do I do now? Take another 150mg capsule tomorrow (two in total) or one in the morning and one in the evening? Or is it too much to add in another 150mg one. I have no idea how much hormone that is in the capsule since it is a supplement and not a medication. How do I know if I take too much. can it be dangerous to take too much. I read something about T3 pooling that can happen if you raise too much too fast.

If you have read this far I'm grateful! if you have any good advice I'm forever in debt :)

Other tests from my latest labs (this is all the labs I have, not sure if anything is relevant):

B--SR 19 mm<13

P(fPt)--Glukos 5,2 mmol/L4,2-6,0Provmaterial: Plasma

B--Trombocyter 189 x 10*9/L140-350

B--Leukocyter 7,2 x 10*9/L3,5-8,8

B--Neutrofila gran (seg) 4,2 x 10*9/L1,7-7,5

B--Eosinofila granulocyter 0,29 x 10*9/L0,04-0,36

B--Basofila granulocyter 0,06 x 10*9/L<0,2

B--Lymfocyter 2,2 x 10*9/L1,1-4,8

B--Monocyter 0,44 x 10*9/L0,10-1,00

P--ASAT 0,41 µkat/L<0,76

P--ALAT 0,36 µkat/L<1,2

P--CRP 6 mg/L<10

Pt--eGFR (1,73m2), MDRD>90 mL/min/1,73m²>60

P--Kreatinin 73 µmol/L60-105

P--Transferrinmättnad 0,240,15-0,60

P--Järn (iron) 15 µmol/L9-34

P--Transferrin 2,54 g/L1,9-3,3Provmaterial: Plasma

B--Hemoglobin 149 g/L134-170

B--EVF 0,450,40-0,50

B--Erytrocyter 4,9 x 10*12/L4,3-5,7

B--MCV 93 fL82-98

Erc(B)--MCH 31 pg27-33

Erc(B)--MCHC 330 g/L320-360

Thanks,

11 Replies

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  • Just a thought reading through this have you had b12 folate and ferritin tested? As these need to be optimal not just in range. I think in your position I would send an email to Tammy. And if you can get bloods tested before you raise? Hope that is of some help.

  • Hi, thanks for your reply!

    Folate might have been tested 10+ years ago since I back then had a medication that prevented folate uptake so I was put on folate tabletts while eating the medication...

    But for many many years I've had low hemoglobin (hb) and been treated with iron pills. At my lowest I think I had a value of ~90 [134-170] but most often I would be a~115-120.

    6 months after starting the aip diet my hemoglobin was ~150 and has been there ever since. The iron pills I got never moved it more than a few units and my doc used to say that it meant that the anemia wasn't caused by low iron/ferritin (but she kept prescribing the pills anyway)...

    I know that when my old doc tried to go to the bottom of my anemia she said she tested several iron/ferritin labs and I assume b12 too and they were all normal. This was many years ago and I don't have the values anyway. It was back in the day when I trusted that if the doc said it was fine it meant fine

    Do you think that my symptoms are more likely to come from folate/b12/iron deficiency than from lack of thyroid hormone?

  • It is possible. B12 deficiency can cause fatigue. Also low iron affects t4 to t3 conversion so I would suggest getting these labs and seeing where you are in the range.

  • Ok, great. I'll ask for them at my next visit to the doc (I have an appointment late October planned).

  • Thyrogold is a very weak NDT which is considered more a dietary supplement than a medication. I found this info on it and I hope it's ok to post here

    naturalthyroidsolutions.com...

  • Yes it's sold as a supplement but I'm not sure its actually that weak... Considering one pill of the 150mg had such a great effect the first days and brought my morning temp up around .4 deg celcius it can't be totally useless ;)

    I'm more concerned it's actually stronger than I thought. I have since writing the post googled a bit more and found that the 150mg capsule might be equivalent of 1-1.5 grains of armour...

  • It is not usually considered more a dietary supplement by people here.

    But the vendor cannot claim thyroid hormone content to avoid being classified as a prescription medicine.

  • What is your native language? You might find a suitable site explaining your blood test results for you, here :

    labtestsonline.org.uk/globa...

    I use the UK English version of labtestsonline quite a lot. It isn't the only site I read when I want to research a blood test result, but it is always my first stop.

  • That seems like a pretty solid site!

    I'm from Sweden, so being a small country and language I do almost all my research in English now days. When it comes to labs the difficult thing is often to convert labs between different scales (if needed) and to correctly determine what test is called what in different languages.

  • I've had to do conversions from SI to imperial or back again - I really can't remember why now. But I found these links at the time :

    soc-bdr.org/rds/authors/uni...

    amamanualofstyle.com/page/s...

    They might be helpful, if you haven't already found them, or something better.

  • Well I thought I should give an update.

    The morning after the initial post I woke with a temp of 35,9 and heart rate of 52 bpm and was very tired again. Snoozing for half an hour and feeling crappy again.

    So, before going to bed last night I decided to increase the dose so I opened a capsule and took ~1/3 of the content with some water. I woke up without feeling too exhausted. A temperature of 36.3 deg Celsius and a heart rate of 58bpm. This morning I took a full capsule after getting out of bed as I've done the last week.

    Left the house for work at ~8am. A time where I 8 days ago would not have been able to gotten out of bed yet (although I haven't changed the setting on the alarm clock :) )

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