Self medication advice

[Bec-Australia]

Hi there, I have been searching for answers for my daughter for around 8 years now. She has many, many hypo symptoms and is currently overweight (despite controlled diet and exercise), depressed, anxious, psychosis, brittle hair that falls out, no period for months, constant sore throats, tired, foggy and the list goes on. I've battled doctors for years to test her thyroid and each time they would only do her TSH. First test was around 2 then 3 then 4 and now it's finally out of range. I have a referral to see an endo (recommended as very good) but my experience with endos is not good. Mostly they are arrogant a-holes with a God complex. I am seriously considering self medicating her if this endo is no good. Problem is, I don't know where to start. I have sourced where to buy but struggling to understand how to treat. I also think I need to get more tests done. These were her tests done and her latest results:

TSH....................................................4.55* mIU/L (0.50 - 4.00) H*

Free T4.............................................. 14.7 pmol/L (10.0 - 19.0)

Free T3.............................................. 4.3 pmol/L (3.5 - 6.5)

Reverse T3........................................ 512** pmol/L (170 - 450) H*

Ferritin................................................46 ug/L (15 - 165)

Iron..................................................... 7 umol/L (7 -27)

Transferrin.......................................... 3.0 g/L (2.5 - 3.8)

Transferrin Sat.................................... 9% (13 - 47)**L

Vitamin B12......................................... 262 pmol/L (150 - 700)

Serum Folate....................................... > 54.0 nmol/L (>9.0)

Vitamin D............................................. 55 nmol/l (>50)

[Clutter]

Bec-Australia, that's the first time I've seen high rT3 in a patient not taking thyroxine. TSH is high, FT4 and FT3 are low in range. Most people are euthyroid when TSH is around 1.0 with FT4 in the upper quadrant and FT3 in the upper third of range.

If your daughter does self-medicate I suggest you start her on 18.75mcg Liothyronine (T3) which can be split into 3 doses 8 hours apart initially. The dose is equivalent to 56.25mcg Levothyroxine. Levothyroxine or thyroxine in NDT will likely increase rT3.

In the meantime your daughter can supplement as follows:

Ferritin is optimal halfway through range to 100, and iron is bottom of range so supplement iron and take each tablet with 500mg-1,000mg vitamin C to aid absorption and minimise constipation.

Vitamin D is optimal 75-100 so supplement D3 5,000iu daily for 6-8 weeks then reduce to 5,000iu alternate days.

When your daughter starts taking thyroid replacement it should be taken 4 hours away from iron and vitamin D.

B12 is optimal around 1,000 according to the Pernicious Anaemia Society. Supplement 5,000mcg methylcobalamin for 8-12 weeks and then reduce to 1,000mcg daily.

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I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[Bec-Australia in reply to Clutter]

Thanks so much for your assistance. Am I able to buy Liothyronine myself if the endo proves useless? Our GP told me all her results are really good and no further action is required. I had to forcefully demand a referral to the endo. My concern is the endo will say the same thing and I'll be back to square one.

[Clutter in reply to Bec-Australia]

Bec-Australia, well I can't agree that TSH over range is fine and hopefully the endo won't either. I would crack on with supplementing for now and see what the endo says about thyroid levels and rT3. rT3 isn't tested on the UK NHS so most of us rely on US thyroid fora and sites like Paul Robinson to help sort it out.

Thyroid meds can be bought online and members will recommend sites if required. You should check your customs regs to see whether you are permitted to import them without precription.

[Bec-Australia in reply to Clutter]

I had to lie to get the rT3 tested! Told GP that her psych ordered it to be done. The GP described it as a hippy test and couldn't work out why a doctor would order such an obscure test. I did suggest it was possibly to get as clear a picture as possible but he just rolled his eyes. *sigh* Oh well, at least I got it done!

[catrich in reply to Bec-Australia]

A " hippy" test?! That's another cretinous comment to add to the list.

[helvella in reply to catrich]

I feel that use of the word "cretinous" (other than as a medical term) in a thyroid forum is in very poor taste.

[catrich in reply to helvella]

Do you Helvella? Why? I think it is rather ironic. All things considered. But I'm an English teacher so perhaps my take on this is a little different. I don't believe cretinous is used in a medical sense anymore nor is it used to disparagingly refer to people with mental handicaps as perhaps it once was. It is most commonly used as a synonym of "stupid". "A stupid comment". It is, then, a perfectly fitting adjective for medical professionals who believe significant thyroid function tests are " hippy" tests. I'll use the term 'moron' next time.

[helvella in reply to catrich]

You are, of course, free to believe whatever you wish about use of the term, but it is still in use in a medical context:

onlinelibrary.wiley.com/doi...

"Moron" is possibly no better:

usually offensive : a person affected with mild mental retardation

merriam-webster.com/diction...

[catrich in reply to helvella]

Sorry to be pedantic Helvella but 'cretinism' is one thing and 'cretin' & 'cretinous' another. I used the adjective. I did not, for one single moment, seriously suggest that the doctor concerned was suffering from a congenital deformity.

I thought it was fairly obvious that I was being pejorative. I shall have to try harder next time!

BTW, the Cambridge Dictionary define both cretin and moron as ''a very ​stupid ​person''. There is no other definition.

(And why did you not choose the most frequent definition of the term when you cited Merriam-Webster??! )

My comment relating to 'moron' was meant to be ironic. I should learn that humour often fails to transmit in the digital world.

And finally, I apologise if inadvertently I have caused you or anyone else on this great forum, any offence.

(An interesting blog post by Oxford Dictionaries on 10 words and phrases that have murkier origins. Cretin and moron included.

blog.oxforddictionaries.com...

[maliamanjit1]

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[silverfox7]

How on earth can results be classed as fine when highs and lows are flagged up! If nothing else they should suggest retesting to see if that was just a blip!

[faith63]

Her problem is not really with her thyroid. It is whatever is causing the high reverse t3. That is a terrible dilemma to be in.

It is very important to test to see if she has hashimoto, that will cause her symptoms and high rt3 too.

[faith63 in reply to faith63]

..her body is not utilizing the thyroid hormone that she has available. From experience, supplement t3 will not work with a high reverse t3. Adding any t4 would be really a disaster. i'll bet she has hashi's.

[Bec-Australia in reply to faith63]

Hopefully we get a good endo and he does some further investigation.

[faith63 in reply to Bec-Australia]

i would not hold my breath..you would be one of the rare, lucky ones then.

My son and i both have high reverse t3. He is not on thyroid medication and is not well right now.

[faith63 in reply to faith63]

How old is your daughter?

[Bec-Australia in reply to faith63]

She is 17

[faith63 in reply to Bec-Australia]

i think you had better go the functional medicine route, to look for why she is not utilizing her hormones correctly. Maybe she has hashimtos disease. with that you can have normal labs and be quite ill. If you self medicate, you could be in real trouble with authorities, if she ends up hyper. I tried my underage son on t3, when he was 15. But, i knew what to do if he went hyper. I knew if i took him to his doctor or hospital, they may find out i medicated him..know what i mean? Anyway we are seeing a functional doctor and the problem is with "leaky Gut" and so many years of antibiotics.

[mistydog]

The doctor needs to test the thyroid antibodies (TPO and TgAb). If she has high antibodies then you know that she has an issue with her thyroid that will cause these spikes. You could try with a GF diet and supplements. I think if you get the iron and B12 up and she still feels bad then look at the other things. Also look at Dr David Clarke on YouTube, might have a video about high RT3 and why thyroid meds might make it worse. I hope you find some answers.

[Bec-Australia in reply to mistydog]

Thank you, will have a look at youtube. I am really torn re self medicating. Her health, particularly mental health, is in such a bad way that I don't want to make things worse. On the other hand, I have been fighting various doctors for 8 years to get help for her so am desperate to try anything. It's hard

[jennygrigg in reply to Bec-Australia]

Hi Bec-Australia,

I live in Australia too and have been down the same path as you are on, with my now 21yo daughter. I have been searching for answers for 14 years. We have faced some terrible times, but now feel we are heading in the right direction, with the help of a functional medicine doctor. Every other standard Gp has basically told us all is normal when I know it is definitely not. If you would like to email me privately, (I need help on this one as I am new here and don't know how to give you my private email address) I can give you the names of some doctors that could really help. By the way my daughter is now on T3 only due to high rt3 levels.

[Bec-Australia in reply to jennygrigg]

I tried to reply to you but for some reason it's not going through. Not sure what I'm doing wrong???

[jennygrigg in reply to Bec-Australia]

Did you receive my private message with my own email address? If not I wonder if someone could help us with this, as I am not sure I can provide names of doctors and sources to self treat on this public forum. I will try to send my email address to you again privately, and in the meantime maybe someone could help us connect. Hang in there.

[mistydog in reply to Bec-Australia]

Try high dose B12 first. It needs to be a lot higher and it's not possible to overdose but could make a big difference

[Bec-Australia in reply to mistydog]

Thank you, B12 is one subject I am educated in (unlike thyroid!) and will be filling her with sublinguals as soon as her endo runs tests on her.

[Bec-Australia]

Apologies to those who have pm'd me. I've tried to reply but for some reason it's not going through.

[jennygrigg]

I've just sent my private address again. If need be you may have to email outside of the forum itself, I am not sure myself.

[Amazon07]

Bec-Australia How is your daughter now? What next steps did you take? I hope she is better!! Hugs