T3 only, hair falling

[muscatarosie]

Hello everyone,

I have posted a while ago with some breathlessness symptoms I started getting once I stopped T4 meds and moved to T3 only. I am now better in terms of that. 

However, my hair started falling within a couple of weeks of T3 and has not stopped. I have lost half my hair in approx 3 months. Please note that my iron and all other readings including B12 are really good. 

I would like to find if anyone is experiencing this and if it will stop,

Also, 

Does anyone know a reliable source of the best natural thyroid hormone, a source that does not require a prescription? I am wondering if I should still have some T4 in my system, my T4 bloods came back as <0.5. 

Thanks a lot, wishing you all great health, 

[shaws]

Hair falling is a common symptoms no matter what thyroid hormones we may take. I would get your GP to check your hair as you could be developing another auotoimmune condition (I hope not) called Alopecia Areata.

If thinning hair is due to hypo it can pick up again when you are on an optimum of hormones.

[muscatarosie in reply to shaws]

Dear Shaws,

Thank you for your reply. I have been hypothyroid for 10yrs. Been on T4 only since my diagnosis and my hair is only thinning when I am low in iron. However, it has never been so extreme and I has coincided  used with the change from T4/T3 to T3 only. 

Has anyone else had a similar experience? 

Thanks

[shaws in reply to muscatarosie]

This is a link which might be helpful. Your symptoms could be co-incidental.

[17serenella in reply to muscatarosie]

Dear Muscatrosie,

just saw yr post.

also seem to have hair loss when my T3 gets too high, either absolutely or relative to T4. Massive hair loss the past 5 weeks when i changed from T4 of 120 and no T3 to T4 90 and 10 T3. (Am too shocky to cry, and feeling very alone as docs contradicting each other and havng me on opposte regmens. I feel a total (desperate) guinea pig. )

Why did yr doc change you off all T4?

serenella17

[Clutter]

Muscatrosie,

My hair started coming out in clumps when FT3 was over range on T4+T3.  Hair loss stopped 7-8 weeks after I reduced T3 dose and a subsequent FT3 test showed FT3 was back in range.

You can order private thyroid tests including FT3 from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

FT4 is low because you are taking T3 only.  It doesn't matter that FT4 is low because instead of relying on T4 to T3 conversion you are getting T3 directly from the Liothyronine (T3) tablets.

[muscatarosie in reply to Clutter]

Thank you Clutter,

I will order some private tests to see what my T3-T4 ranges are. The GP is only doing the basic ones.

[muscatarosie]

Would anyone be able to recommend a good source for natural thyroid replacement that I could source without a prescription? Despite my T3 only change, I have not noticed huge benefits as I am still suffering from brain fog, cogntive impairment as well as other physical symptoms.

Thanks to everyone who has replied so far,

[shaws in reply to muscatarosie]

Put up a new post as your question above might get lost . Ask for a Private Message to be sent to you as we cannot put on the open forum details of prescripton meds.

[Daffers123 in reply to muscatarosie]

well it sounds to me that you need at least some T4. same happened to me on T3 only plus I lost lots of weight as well as lots of hair and got anxiety and didn't feel much benefit of T3 only. why not add some T4 and see how you feel.  my hair loss stopped quickly once I stopped T3

[muscatarosie in reply to Daffers123]

Dear Daffers123,

It sounds like you've had a similar experience. My hair did not fall at all when I was on T4 or T4/T3, except for the time when I was vegan and anaemic. I was not taking T3 at all then. It is not nice when the hair is falling so much all of the time. I have to clean my floors daily as my hair is quite long and it goes everywhere!

[Afaghieh]

Hi Muscatarosie

I am on t3 and continuously loosing my hair I have given up.

[muscatarosie in reply to Afaghieh]

I am sorry to hear this Afaghieh, please do not give up! It is a complex disorder that we suffer from and it is about finding out what the body needs. Everyone is different.

Incidently, I went to see a lovely neurologist for my cognitive decline since the thyroid diagnosis. I suffer from difficulties forming new memories, concentrating, maintaining focus etc. These symptoms have occured since my diagnosis, regardless of which hormone replacement I have been taking.

He was v well informed in the impact of hashimoto/ hypothyroidism on the brain. He spoke about a number of patients he had who had to retire early due to cognitive decline in their late 40s, which was a bit scary. He has also advised me to take T4 as the brain needs it, not just the hair. He said it was important to take the T3 but also the T4. Based on my experience to date, I will agree with this. He was very informed about autoimmune conditions overall and his approach is more functional than organ-related.

I have therefore started adding a very small amount of T4 to my T3 (which I have reduced slightly). I will see if the hair falling will be fixed by me doing this.

Good luck, just find out what works for you,

[Daffers123 in reply to muscatarosie]

That is scary about the brain stuff. How wonderful to find someone who knows about autoimmune disease. Is he by any chance in London or the South East ? was he able to help you?

[muscatarosie in reply to Daffers123]

Yes, it is. I am happy that T3 only has had good benefits for you, including strong nails. My nails and skin have not changed significantly on T3 only. I have been feeling more energetic in general since taking T3 but could not say that it has been significanlty different for me on T4/T3 or T3 only, except for my hair falling. You have to follow your symptoms.

The neurologist I have seen privately for an assessment works in Bournemouth and Essex. He has not promised anything yet, we are still at the assessment stage. However, he said that Hashimoto/ hypothiroidism is a very complex thing and that it is hard to treat. In addition, he said that if someone has an autoimmune disorder, sometimes they may have other autoimmune conditions. I can say that in terms of understanding my problems, it has been the best assessment I have ever had with anyone since my initial diagnosis and I have seen ppl privately and in the NHS on numerous occasions.

[Daffers123 in reply to muscatarosie]

Could you please  let me know his name by PM as Essex is not far from me.  

It's good to hear some positive stuff and like you I've seen lots of private people -it's cost thousands to get nowhere !

[ocean33 in reply to muscatarosie]

Hi muscatarosie, could you also PM me with the details of your neurologist?

Many thanks

[infomaniac]

Those of you who lost hair on T3, can I ask whether you had problems on T4 as well? (hair probs that is!). 

[muscatarosie in reply to infomaniac]

Dear infomaniac,

As I have said in one of my previous replies, I have not had problems with hair falling, except for when I was anaemic, which I am not any more. I was on T4 only at that time.

Now I remember that the only other time my hair went very strange (falling and becoming very thin and brittle), was before I got my hypothyroidism diagnosis. I had symptoms for years before a doctor finally agreed for me to have a blood test.

Hope this helps,

[Daffers123 in reply to infomaniac]

No hair was fine with T4. Interestingly my nails were the strongest ever and grew really fast on t3 only

[Afaghieh]

Thank you. Recently I have had pinch nerve in my cervical spine which affected almost every organ in my head. I was given Oral morph, diazapam. codeine phosphate,panadol and Volterol. Now volterol I had total of 60x100mg which I believe made my hair fall further. I know it's antagonist but my head was on fire had no choice.

I was told not to take t4 while on t3, there again what can you do when everything is dictated on the screen as how to treat patient without assessing the individual needs.