Awful setback.. advice needed!

Hi Everyone..

I had hoped I’d nailed this thing and wouldn’t be back here for a long while but here goes again with the questions:

Potted history:

I was hyper, then swung down to subclinical hypo but symptomatic. Gp's (of course) wouldn’t prescribe anything and ordered tests and kept losing them, but I finally got in front of the endo having ordered private bloods and antibodies being high. Started with one endocrinologist, the junior and she was rubbish, a real ‘computer says no’ type.. I kept her talking, trying to make her come to the conclusion that I wanted her to, then finally the main endocrinologist came in, looked at the results and in a second said its autoimmune, we should prescribe 50mcg Levo (hurray!)

Had an awful time with Levo at first, blew up like a balloon, stomach problems, I hated it, but kept going and gradually all that subsided and I started feeling a little less tired and achy which felt like a small miracle. I decided to add some T3 myself to see if that would improve things like the awful hairloss and weight gain, I ordered Tiromel and have to say that I don’t think it did anything at all, but I kept taking 50mcg just in case it was helping in a small way.

Went back to the endo for a check, totally different this time. I could only see the junior and she was clearly miffed at having been overridden by the senior the last time. Told me that my thyroid was fine, wouldn’t give me a print out of the numbers (though I saw over her shoulder that TSH was 2 point something and T4 was 16 but couldn’t get the ranges, obviously no T3 check) and sent me packing basically.

At that point I felt ok, but since then, I have had an immense kickback. Feeling worse than before the Levo, tired, aching, not sleeping properly, low mood and my hair is coming out all over the place.

So questions are these:

when I was diagnosed as Hyper, my t4 was off the scale but my T3 was at the low-ish end of ‘in range’. I also didn’t feel unwell, though I did have a few palpitations. Would you expect T3 to be high as well in Hyper and if it isn’t, does it maybe mean that you’re a crummy converter?

Does anyone else think Tiromel doesn’t work? Should I change brands?

I think I’m going to have to go this alone but I’m so shocked that I could have this extreme of a nose-dive whilst on medication and nothing having changed. What could cause it? And I’m also terrified of changing meds and all my hair falling out!

Any help or advice would be wonderful.

Thank you

11 Replies

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  • TEGS, if your FT3 wasn't over-range, you weren't hyper. Low TSH and high FT4 Don't count as being hyper. It's the FT3 that is important.

    You have Hashi's, Don't you? Well, that can be responisible for a lot of things - like destroying more of your gland so that you have become more hypo, and need more Levo. Besides, 2 point somehting is not good enough for someone on Levo. It should be around one.

    You're right, if your T4 was over-range, and your T3 was low, then you weren't converting.

    She had no right to refuse you your results, they are yours be law. She was breaking the law by refusing them.

    Are you going to go back to this endo? if you do, insist on seeing the Head Cheese, not not one of the maggots. Tell him you still feel bad and need an increase in your dose. Also ask him to test your vit D, vit B12, folate, iron and ferritin. There has to be a reason why you're not converting - although it's true Hashi's people often Don't convert very well - but nutritional deficiencies could be another reason.

    Take care. :)

  • Thanks greygoose. I did wonder if I had conversion problems, but when the endo saw me as 'hyper' he didn't comment on the fact that the T3 was in range.. and I wasn't nearly as well educated in thyroid matters as I am now so I didn't ask!

    When I had my private labs done, they flagged up low Serum Ferritin (something I have had many times in the past) I have been on 210 Ferrous Fumarate but had to change to a liquid supplement as fumarate and sulphate make me really sick. I'm going to try a haem iron supplement from liver extract (yuk) to see if thats any better.

    B12 was low in range and I'm taking a high strength sublingual supplement to help with that.

    I think I'll get some more private bloods done to see where I'm at. Maybe they'll shine a light on something.

    Thanks so much for your response.

  • You're welcome, TEGS. Hope you get some answers soon. :)

  • Wonderful

  • Hi TEGS, I don't have a lot of answers but can tell you this: all Free T4 either becomes Free T3 or Reverse T3. So you can have a very high T4 and if it becomes reverse t3 your free t3 could be very low.

    Why this happens has to do with possible lack of conversion (low iron, high cortisol plus some others) or pooling. I really don't think there is anything defective with the various hormones people buy and more likely something to do with how their body is handling them.

    Lately I'm viewing our hypo in a more holistic manner. One doctor says that all thyroid issues are hypothyroidism even when it appears hyper. To me that says that treatment should not be about adding or subtracting hormone.

  • TEGS,

    Sorry to hear you are suffering so... & of your hair loss...

    You are recently diagnosed with Hashimotos which will cause HYPER & HYPO symptoms... ! !

    You have been medicating T4 (Levothyroxine) for only two months .. what dose are you on..?? . .......

    You are self medicating T3.. .. A TSH of 2.0 is too high when medicating on T4 & T3. .. You are under medicated.. ..

    Also you it is unwise to self medicate without a T3 blood test to assess what is going on.. .. ...

    If I were you.. my first step would be to get private blood tests in order to get the whole picture and then take necessary action. You also need optimal nutrient levels.

    Have you had VIt D. Vit B12, folate and ferritin checked as deficiencies will interfere with thyroid synthesis..? .. /? ....

    Post results with ranges (numbers in brackets ) for members to comment..

    Hormones are terrifying TEGS.. we are all in it together...

    Hope you feel better soon.

    Flower

    private testing

    thyroiduk.org.uk/tuk/testin...

  • Thanks Flower.

    I've just ordered another blue horizon test so should know a little more about where I'm at as soon as I can get the blood drawn.

    I was low on ferritin, low in range B12. Not had D or folate done, but I've been supplementing ferritin and b12 since July. Had to change from fumarate to liquid iron as fumarate was making me sick (literally) so I'm not doing too well with that, but have ordered some Haem iron from Liver extract to see if I can up the Ferritin levels with that.

    Fingers crossed I can find my way through.

    Thanks so much for getting back to me.

  • TEGS,

    I don't supplement iron but there are other members who have had trouble raising dose too. They changed iron type and were OK.

    It is finding one that suits you.

    If you have any more trouble post a new question as many members have to supplement iron and will have lots of advice.

    F

  • Tegs, if you've not felt any better adding T3 it may be that you aren't taking enough, or it could be that Tiromel doesn't suit and you should try another brand like Uni-Pharma.

  • Low ferritin can cause or contribute to hair loss. It needs to be more than 70 to keep your hair. Heres a link about it.... healthguidance.org/entry/42...

    Xx

  • i am shocked at your treatment. I have dealt with hyper/hypo thyroid (80% taken out at 13, RAI, etc.) for 58 years. I started taking Armour (in the US) and felt better than on Synthroid but Armour doesnt seem to be as stable. Was at a good level for 2 years then going hypo/hyper. Now hyper, T3 levels up. Do you have Endocrinologists there? They are specialists in Endocrine issues and may understand your issues and be able to give you better advice. Best of luck, KMB1

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