Really low TSH, continuing hair loss, endo wants to lower my dose of Euthyrox from 100 to 75, what is happening?

[Kapibara]

I got tested for TSH in November /TSH 1.710, fT4 22, aTPO 300/. In December I started AIP protocol, now I reintroduced some foods back but still very healthy /lacto and gluten free, almost no sugar/. I did private blood testing in February

TSH 0.075 /0.27-4.20/

fT3 6.22 /3.1-6.8/

fT4 21 /12-22/

aTPO 308 /0-33/

Cortizol 850.55 /145-619/

B12 486 /156-672/

vitD 33.10 /30-44/

Folate 50.48 /norm more than 12/

My new endo says that I am overmedicated and lowered my Euthyrox dose from 100 to 75. Why is my TSH jumping like crazy? Two years ago, after I dropped the medication for 3 weeks, one month back after being on it again my hair started falling out horribly and still is. Please help.

[Arlie123]

Hi Kapibara - do you have a ferritin result? It’s often low in those with thyroid problems and can cause hair loss. I’m sure others will be along with more help too. But def worth checking your iron levels

[HashisKate]

Hi, could a theory be that due to your healthier lifestyle and cutting out foods that are potentially making absorption of your medication worse by hurting your stomach in some way, that you are now absorbing more of it? I have had a similar thing happen, although a bit more gradually. I started supplements and very low gluten diet after finding a number of my vitamins were low (vitamin d, folate & b12). Since these have improved, my T4 has increased along with my T3 (despite no change in my weight or dosage) and my TSH has lowered to a similar point to yours. I’m anticipating my GP making me reduce my dose too, despite feeling well.

Perhaps it’s a theory worth considering, but hopefully those with far more knowledge may have some input too😊

[HashisKate in reply to HashisKate]

And sorry I’m not sure about the hair loss. I noticed a lot of hair loss when I initially started taking Levo, but nothing huge since then. Arlie’s tip about ferritin is good though, iron issues can cause hair loss x

[Kapibara in reply to HashisKate]

Thank you for you reply, I was thinking the same thing. Before I wasn't so careful about food and had mostly mussli with coffee after taking my levo in the morning. Now that I wait at least half an hour and then eat some veggie jogurt, or meat and vegetables the absorbtion is probaly much better. And aslo going full lacto and gluten free helped. Is low TSH actually a problem? Shouldn't it help the thyroid gland to recover as it is not under so much stimulation to produce hormones?

[HashisKate in reply to Kapibara]

There are people who could probably explain better than me, but my understanding is that TSH in itself doesn’t actually ‘do’ anything harmful. TSH is a messenger hormone, so can be an indicator. So a very low or suppressed TSH is a warning sign that there may an overactive thyroid or over medication issue. My TSH is at a similar point as yours, my T4 is top of normal range (but still in normal range, just!) but my T3 is only just about half way through the range. I am a poor converter. I believe that it’s only high levels of T3 that are the problem. X

[Kapibara in reply to HashisKate]

Ok, I understand. But both my t4 and t3 are fine, so I should be an ok conveter. Should I lower my dose to 75 for 3 month and see what happens? That was what my endo suggested. I am a bit scared, to be honest.

[HashisKate in reply to Kapibara]

I am not experienced enough to make recommendations, especially if you are uncertain and scared yourself. I feel fairly well, so am not looking forward to a reduction or the battle not to reduce as the case may be. I wouldn’t know what to suggest if you have fairly good levels of T4 & T3 and still feel so unwell except for what others have already suggested re: vitamin d and ferritin and iron screening. Treating thyroid is often a lot of trial & error and finding numbers that work with you, not always within ranges. No one can really tell you where your ideal might lie except yourself.

It’s really hard when you don’t have any trust or confidence on the doctors that are meant to make us feel better ☹️ I really hope you find a path forward that you’re happy with

[Kapibara in reply to HashisKate]

Thank you very much for your support, it means a lot. I find it really worring that doctors don´t try and educate themselves further and don´t listen to their patiens. I will add iron supplements to my diet and also vit D. I will also try the reduction and see where it goes. Thanks again.

[HashisKate in reply to Kapibara]

I would get a full iron panel before supplementing with iron, rather than just guessing that you need it.

I know exactly what you mean about doctors & thyroid care on the whole. Such a lack of understanding 😞 good luck x

[Kapibara in reply to HashisKate]

Thanks and good luck to you too. I will try and ask for a blood test with my GP, but now with covid everything is much more complicated. My iron was alway lowish and I had some prescribed by my GP in the past, so he should be open to that. We will see.

[silverfox7]

You aren’t overmedicated but you are high. The other thing that stands out is low Vit D so I would concentrate getting D up to 125 abs see how you feel then. The issue to look out for is that better Vit D levels could raise other things too high so would have to juggle a bit to get levels right for you.

[Polly91 in reply to silverfox7]

That’s v interesting Silverfox. My vit D is 125 now & ivr noticed my T3 is v high and T4 high and TSH undetectable. I was getting a lot of hair loss too.

I lowered my metavive dose a month ago and initially I thought hair loss had stopoes but now getting a lot of hair loss again & slight tiredness/brain fog. So maybe I’m too low now?

Hair loss and thyroid levels high or low is such a pain. I never used to have such an issue but now it seems the T3 has to be exactly right and I’ve no idea how long and if I will find that sweet spot?

Kapibara you’re vit D does look v low. I have quite high ferritin so for me hair loss is not related to low ferritin.

[Kapibara in reply to silverfox7]

Thank you. I will try to raise my vid D levels.

[Stourie in reply to silverfox7]

Hi, although her vitD is low in the range top of her range is only 44. Jo. Xx

[Kapibara in reply to Stourie]

Hello Stourie, what should the range be?

[Stourie in reply to Kapibara]

Hi, ranges differ in different place to place so your range is just up to 44 so 125 would be too high. You wouldn’t want it over 44. Jo. Xx

[Kapibara in reply to Stourie]

Ok, I understand. I still have not found the courage to lower my levo, but I feel horribly tired and have to have a nap after every lunch. I also feel as if I had heart palpitations from time to time, not strong ones. Could I really be overmedicated? The thing is, I have also lost another kilo and I eat a lot, so that is strange.

[Danyosu]

Hi, I'm sorry to hear that. You may want to get yourself onto possibly the best forum on Facebook: Hashimoto's under construction. Post there, read the files. You'll find all the answers. I used to have bad hair loss, now my hair is really lovely!

[TRbo in reply to Danyosu]

Great to hear you are well, what do you put you good hair quality down to?

[Danyosu in reply to TRbo]

Firstly it depends why one may lose hair. Then it's a bit too complex to explain in a few lines. I have hashimoto's, hence i follow an anti inflammatory diet. I've been on Aip/paleo for nearly 5 years, without cheating. Then I'm on a bunch of targeted supplements, incl omega 3, zinc, L-lysine etc etc then I'm on natural desiccated thyroid hormone, which so far I haven't been able to find in the UK (mine comes from Germany, prescribed by my specialist). And I also exercise 3-4 times a week

[TRbo in reply to Danyosu]

Thanks, when I was worse this time last year I was losing hair in loads but once I got my iron up it stopped, have started on metavive but not so good as the one I got from Thailand. Have just received another batch of Metavive that has something more added and I do feel it’s better.

[Kapibara in reply to TRbo]

I have looked what Metavive is, have you stopped taking levo completely and now substitute with Metavive? How does it work? I can see that you can order it on the Internet.

[TRbo in reply to Kapibara]

I never took levo only NDT but cannot get the supply now so started taking metavive. Easy to order

[Kapibara in reply to TRbo]

Ok, I see. Thanks for the answer.

[Kapibara]

Thank you all for all replies, it makes me feel not so alone and desperate. My iron is 18.09 /6.6-28.0/. It is impossible to take a ferritin test, even privatly /I am not from the UK/. In my country f3 pills are even not regitered and I can only dream about NTD! The hairloss is really disturbing and kind of takes away my confidence. I eat a lot of meat, do yoga 20 minutes in the morning but I am so tired all the time. I hate how disconnected the medicine is. I already went to the rheumatologist /my joins ached a lot/, she said I am fine, to the gastroenterologist /had horrible pains in my stomach, did even colonoscopy/ and he said I am fine, then to the neurologist /with the feeling that I am getting crazy, tired and stressed/, she said I have an overly sensible nervous system and I either find a way to calm down or take pills. I refused. My lower legs were feeling heavy all the time and hurt quite a lot /it came and went/ so I went to the angiologist. She said I am fine. I told this to the endo and argued that all has to be connected to the only condition I am being treated. He told me that he can not help me. I found another one, she at least did the tests I asked her for and prescribed vit D. Sorry for my rant, it is just so frustrating. I hate doctors. Really, I absolutely hate them.

[Bluespots in reply to Kapibara]

We have all had the runaround, we understand....things can improve though.

[Kapibara]

I have looked what Metavive is, have you stopped taking levo completely and now substitute with Metavive? How does it work? I can see that you can order it on the Internet.