Need help with the next thyroid step/need to qualm hair loss/really dire:

Hey guys, I'm past my wit's end, my spectrum of caring because it's been such a long time being so miserable, feeling beyond insecure, mourning my old self. I've spent far too much money, lost my free time, and have been disregarded y the vast array of doctors that are to help. I've documented, I've had bunches but just can't get a break. In summary, I had thyca and had a full TT11/14, RAI 1/15. The interim between the two found me on 25 T3. Starting on 150 T4, two weeks following I found my hair loss starting; it has continued so terribly a year later that I can't even fathom having it not stop. That's not bad this has gotten. My other symptoms are my lethargy, lack of zeal, exhaustion, tingling, etc. I've bounced from 150 levoxyl to 150 with 25 mcg (felt woahhh, hypeddddd) to NDT for seven months and realized losing a lot of weight and hypo and all levels of hyper, so I've returned to 125 levoxyl and 5 cytomel. I don't feel much better. My T4/t3 are both in the low end and my TSH has been at .3 for the past month which I'm sure is the cytomel doing that; my body responds very quickly to T3 and having had my TSH at 0 was not good for me. So my question is, what is STILL causing this hair loss?? It's so heat breaking and I was it once a week. Everyone says this but having no confidence before this, my hair was one attribute I really loved. I work in a beauty driven business, too, it's just... if just this damn hair loss would stop then I could focus on another symptom, but it never damn does. So before I divert elsewhere, my question is, I've been on T3 most of this post TT journey... yes, I felt good the eight weeks prior to RAI on it and experienced no hair loss, not until T4 came in or maybe it was the RAI. But I've been told I'm not a good converter but this was also early in the game. I'm wondering if I raise my dose of T4 that maybe my T3 will raise too, that maybe this is the secret weapon because I'm feeling like a functional hypo person and so many have told me the hair loss stopped after being on T4 alone. I take all my vitamins (even before thyca) and don't understand what caused this to start and why won't it stop. I want to feel better all around but this is just bumming me out.

Sorry for the rant... I just don't know where to go or whom else to ask as I've kinda' become a bit blessed about this. Thank you!

16 Replies

oldestnewest
  • The 1st thing you can do on this Community is post your blood test results for your thyroid test.

    Other than that it sounds too complicated for me, as written by you.

  • I do have a thyroid,but don't know if it still functions(diagnosed hashi's in 1997.)

    Had all the symptoms you list,on T4 only,progressively worsening.

    Think I am one of those who,long term on T4 only,increasingly fails to convert T4 to T3. Throw in a load of sustained stress,so my adrenals couldn't cope.

    Result?Docs say "blood tests show you are optimally medicated"while I am experiencing a long-term worsening hypo-state,ending in depression with panic disorder & overwhelming fatigue.Docs offered anti-depressants.

    The hairloss is incredibly demoralising.I also developed an unbelievably dry,itchy scalp.I washed my hair only with "The Method"bar soap & started buying aloe vera gel in litre tubs off Ebay & slathering it on after shampooing & when the itching started up.

    What changed for me?At the end of May I started reducing T4 & very cautiously introduced T3 in 5mcg steps.T4-free by August.

    Hair shedding slowed right down & this continued to reduce as the T4 reduced,as did alot of other hypo symptoms.

    I am still managing my T3 dose.At present I am on 55mcgs,

    Still experiencing fatigue & other symptoms.Long way to go,but I have hope now.

    All this is thanks to TUK.

    Do not dispair.You CAN get well if you stick with this forum

  • Thank you SO much for your feedback!

    And yes, my post was confusing and I apologize, but I blame the late hour, the depression of this whole situation, and my minutiae for details.

    Labs, let me start with those.

    These are from two weeks ago after switching back to a T3/T4 combo (5 mcg Cytomel/125 Levoxyl):

    TSH: .3 Range ( .35-4.3)

    FT3: 2.3 (1.4-4.4)

    FT4: 1.2 (0.8-2.2)

    (My Labs two months ago prior to the switch found my TSH at 0, FT3 at 3.7 and FT4 under 1.0)

    (Oh, and yes, I, too have Hashi's although nobody tested for it until a few months ago... who knows how much havoc it has played but my antibodies didn't make an issue until being on natural dessicated thyroid treatment, ironically.)

    I hate this. While on Nature throid I lost a lot of weight, was way skinny, great bowel movements (tmi, sorry), never needed to rest but felt manic. I accredited it to having too much T3 as I'm finding too much and it can be bad. But now? My hair is falling out probably worse, my scalp itches soooo bad, I get this tingling in my feet that started a month or so on NT and I thought it was a low FT4 symptom, and I just feel my skin is frying off because it's so dry internally and my knees feel like they pulsate at night, but the hair. Dear gosh, it doesn't end.

    I'm just so frustrated. I've never felt so lost. I've been documenting symptoms and try to correlate but I don't even know where to go next or what would be the next step. Not one doctor gives a crap and it's been almost two years of pure torture. I wish I would have just kept my thyroid and accepted it had I known I'd go through this.

    I'm sorry to be Debbie Downer but I'm 35 feeling like I already died two years ago...

  • after reading again..your best bet is back on ndt, at lower doses or t3 only..no t4..in my opinion.

  • Thanks for coming back with results ClioCat, whilst I understand and empathise with your feelings Of despair, sadly I'm not good at interpreting or suggesting a remedy given your test results. But I wanted you to post them because the Admins on here are very good at doing that.

    to be honest I almost wish I'd never started looking into my health history. I was on Levo 100mcg for over 13 yrs no problems, before things started going wrong with my platelets (red blood cells) end of 2012 and I'm still not sure of the connection between that condition and my thyroid, if there is one! I just know I e gone on to have other things go wrong as well in last 2 years especially since Moving house. My doc only goes on TSH results - I have to ask the whole time if I want something else tested - at least he humours me now - but get interested or curious as to whys and wherefores No! As I said I really understand where you ar coming from, look out for admin replies as well. Chin up, Sambs. :-)

  • Huge Hugs... one day it [kind of] improves.  My very best to you: be well xx

  • thank you, lindaC... I truly hope so... 14 months later,  it's just this constant letdown to the psyche... makes my mourning of my prior self a little bit harder to do...

  • Oh misscliocat, just hang on in and keep in mind as strongly you can just WHO you are :-) xox

  • t4 has to be converted by your organs, into t3, which is the active hormone. The way to do better, is not to dose by labs, but improvements. Many don't convert t4 to t3. T3 on it's own, works well for many or high doses of ndt, but if you don't convert, the t4 in it will turn to reverse t3, blocking your thyroid meds from working at all. ndt is still mostly t4.

    Hair loss is also a side effect of t4 meds..

  • any sudden change to hormones including sex and thyroid hormones can cause hair loss, as low or high thyroid hormones. also ferritin serum needs to be at a certain normal level,and vit d and b12....so deficiencies can also cause it. The dry scalp can be caused by low estrogen or inbalance of hormone especially if you are in menopause....or nearing that age.....and that can throw off thyroid too

  • Thank you all for taking the time to offer your help and feedback!

    it is such a time consuming issue as you, too, are more than aware...

    Finding a doc that doesn't go off TSH alone is so saddening, even having gone to some 'cutting edge' docs; the naturopaths are not much better in my experience, just the opposite.

    My mom made mention to me how I seemed happier on NDT, and I agree, but the high FT3 was causing me issues as much as the low FT4, so it's this horrible catch-22 and I just wish I had more insight to how a year later would be instead of being told, "you'll be fine" because I'm not...

    Maybe switching back to Tirosint and giving it a longer run is the first step and raising my dosage. I'm not sure of all the things to look for in knowing whether proper conversion is occurring... but I'll research.. I am elated for all of you doing well... and for us still struggling, I am holding out for us. xoxo.

  • To anyone, Naomi and missCliocat especially, following this post , who is finding the fatigue, lack of zeal/energy so exhausting - not to mention the hair loss and dry skin, let me tell you what I tried more recently, which helped me. I'm not a medic so I'm not telling you do this, I just suggest have a read and consider or dismiss it!

    There is a pharmaceutical company called Arkopharma. It is a company that supplies pharmacies worldwide and They manufacture several "remedies", using NATURAL ingredients. Like Ginseng, Honey, Royal jelly, and more ! It really depends which symptoms you have that effect you most. I bought Arko Royal Dynergie because I am in France, so I guess in English it would say Energy!

    For me it helped my metabolism,,and gave me more energy. My mind was clearer - no more brain fog. My hair certainly stopped dropping out at the rate it was. And is looking thicker - in that I can't see my scalp under it like I used to. What I notice most is that me eyebrows and pubes have increased! I never did pluck my eyebrows when I was younger and I'm 68 now ! Both those things I could do without :-)

    The box of Arko Royal Dynergie comes with 20 Ampoules - take 1 daily then none for 10 days - that's s a one month course! I took the 2nd month in the same manner but I started feeling the beneficial effects in terms of having more energy. Look the company up on arkpharma.com - they have websites in many languages. But take your Levo or whatever 1st in the mornings or whenever and still leave to 30-60 minutes before taking anything else. The Arko can be taken in glass of water or Orange Juice, so there's your Vitmin C also. I know many of the younger generation do not eat breakfast, but it is essential for health, nourishment and your metabolism to "break your fast" and I suggest eat perhaps couple of small ginger biscuits when you take your Juice and Arko.,Ginger is another good natural ingredient.

    Be careful about how much coffee you drink, because that is another stimulant and I prefer natures own ingredients in the Arko or a similiar product and drink tea with milk in it, which also increases a little my intake of calcium because I have a cereal and milk breakfast, using honey, not sugar for the sweetness I also crave. My guilty pleasure being a Mars bar on occasion and I haven't eaten an plastic yet!

    Notwithstanding what other conditions we may have, it comes to down to our own results and "gut instinct" about what works for us and what doesn't what ever we supplement our food intake with. I've only recently started taking Vit D daily in tablet form, but have also found that my breakfast cereal of weetabix is not agreeing with me. Now I've eaten weetabix for years with no problems - now I have them, so Ive decided I'm going to stop taking the Vit D powder coated tablet!

    A few months ago, when I asked both my doctor (who prescribes me monthly Liquid Vit D3, also in an ampoule) and the pharmacist about taking extra Vit D they both quite strongly said NO to me, Given my current reaction these last few days I'm going to stop taking the daily Vit D now and see if my gut calms down and goes back to not rejecting the weetabix!

    Please remember I'm neither medically or nutritionally qualified - just someone like the rest of you trying to sort my health and life out!

    MISS CLIO - By the way I only take Levothyroxine for my Thyroid and miss Clio that sounds to me like a hell of lot of different type of Thyroid meds you take. Consider going back mentally, to the beginning of your thyroid problem and start analysing things from there. When was your last thyro blood test and when is the next one due! Post your last test results on here including TSH, Free T3 Free T4, Folate and Feritin if you have those tested also, Vit B 12.

    NAOMI - Hashis means you have an autoimmune condition - but there are apparently over 100 different health conditions that can give rise to auto immunity - so not just the Thyroid. Infections of one sort also compromise our systems, which is why the white blood cell antibodies rush to defend the part of the body being attacked by the infection. UTI's are common in women, just as a starter!

    We go through many different physical changes which can play havoc with our adrenals and hormones over the years, not to mention infections as said - which can compromise our own natural immunity. doctors used to rush to prescribe antibiotics for all infections rather than let the bodies own immune and defence mechanisms work properly. When I was younger there used to a saying about "feeding a fever" and " starving an infection" .

    Think back to the old Dickensian films when someone with a fever would have wet chilled towels ut on their brows, and be fed bowls of broth! With an infection, often in the gut, or bloodstream, I would boil up then chill water - it was then sterile after boiling and for a period of 24 hours would only sip the chilled water and when I felt better would commence again by only "eating a little of what I fancied" - quite often it would be either tomato soup or scrambled egg, until slowly my appetite returned.

    It's not always so simple, in fact these days it's quite complicated but I am trying to heed my own advice combined with past knowledge and experience, especially with infections, where I find garlic helps, be it on an open wound or mouth ulcer/boil.

  • Ohhhh, I loveeeeeeeeee any form of vitamin and supplement!!!

    Thank you for sharing that! I will most certainly look into that. I mean, it can't hurt to try, right??

    And I'm seeing one last doc next week before I give up. I'm pretty sure that I'm more hypo right now; I am jolted from my sleep every morning, tingling and numbness in hands and limbs, hair loss... but that T3 given lowers one's TSH so much that they just think I'm uber hyper, you know?

    So I'm guessing I'll have labs done next week again... and I'll be certain to post. And may so ask, how much levo are you on? Did it take you a while to get that amount right? Thank you!

  • Regular Dr's don't go off the same T3 and T4 charts as an endocrinology. ..your best bet is going to see and endo dr and it won't happen over night your body takes time to a just ...when your off your meds for 2 months it will take about 2 months for your body to correct it's self

  • I read where you said you take your vitamins. But what vitamins are you taking? Some vitamins can actually speed up your hair loss. hairisthemanetopic.com/

  • thank you! I take quite a few supplements: calcium, d, buffered c, magnesium, iron, potassium, biotin, a b complex, and amino acids. just recently bumped up to 137 tirosint just shy of three weeks ago. boxed the cytomel to see if I'm able to convert to t3 properly but still feeling fatigued, cold hands, insomnia, and a low grade depression. not sure what to do next as every endo is all like, "you're fine." pure hell.

You may also like...