Help! Think I have made things worse :(

In a real mess now, just had more results through and my TSH has risen again, my T3 is still lowering and FT4 has dropped along with my Serum Folate. Apologies for the line spacing of the results below but I can't seem to get shot of them lol


Jan 28.20 (12-22)

feb 19.63

March 19.56

April. 20.63

June 14.77


Jan 4.44 (3.1-6.8)

Feb. 2.88

March 2.74

April 2.84

June 2.41


Jan 0.04 (0.27-4.20)

feb. 1.28

March 1.81

April 2.55

June 15.70


Jan 61.7 (20-150)

feb 87.3

March 58.3

April 79.4

June 89.7


Jan 615 (Deficient <140

feb 828

March 395

April 440

June 496

Serum folate

Jan 37.78 (10.4-42.4)

Feb 35.99

March 29.10

April 19.94

June 13.08

With all the debilitating anxiety and depression I have been experiencing for the last 8 months, I don't know why things have changed as regards my TSH levels going high; I wonder if taking my Levo at bedtime, from mornings, a few weeks ago has been negative for me? I thought I would try it from reading comments on here from other sufferers. I do snack a couple of hours before bedtime (which is very late) to help with my high morning cortisol levels and am wondering whether I should go back to taking my Levo in the morning when my stomach is completely empty?

The report that Blue Horizon sent with the results suggests I am under medicating or other meds are interferring with absorption. I have been on beta blockers and Diazepam for a couple of months now and I know these can have an affect on absorption, but I normally only have them in the day, sometimes in the evening. My doc also upped my Seroxat about 3 weeks ago from 20mg to 30mg, although he wants me on 40mg which I haven't quite reached yet because I don't think it is making any difference to my depression and only really ever worked wonderfully for me on ridding the anxiety symptoms I had suffered for over 25yrs.

I take 75mcg and 100mcg Levo alternate days. Based on my weight of just under 9st. I don't really know what Levo dosage I should be taking now, it's just turned into a real mess :( and I feel I have caused it.

Could my changing when I took my Levo have altered my results that much?

I have given up on the Endo I sought help from. He assures me my low T3 is just purely down to my high stress/depression/anxiety levels. In one of his letters to me he said:-

"after repeated biochemical tests performed, the results did not confirm low T3 (measured on 3 separate occasions) and the lower T3 levels as measured by Blue Horizon were likely stress related and in line with the severe depression and anxiety that the psychiatrist confirmed that I referred her to). Cortisol levels were measured on repeated occasions throughout the day and indeed elevated up to threefold above the upper limit of normal, mainly in the morning and correlating with symptoms of anxiety and settling in the day; this was reproducible on repeated occasions but the observed pattern also matches the pattern often seen in patients with depression, although it is difficult to comment with certainty whether anxiety caused raised cortisol levels or the other way around.

Given her extreme anxiety we also measured plasma metanephrines and normetanephrines which were mildy elevated, however a MIBG scan came back as normal.

I suggest a 6 monthly measurement of TSH and FT4 for possible dose adjustment but additional tests (FT3, reverse T3, with the patient being somewhat fixated on this) are discouraged and no specialist follow up in the thyroid clinic is needed".

I saw a specialist about the small pericardial effusion that showed up on my scan but he assured me it wasn't anything to worry about but wanted me to have an ultrasound.

I also recently had my first ultrasound on my thyroid and there is barely anything left (which I suspected). The Consultant said it should be around 6cm each side; one side there is only around 2cm left and the other side was barely detectable!

So that's it really, my Endo has wiped his hands of me! He didn't even address my very high antibodies which show up on every blood test I have done!

I hate to admit it but he may well be right about the depression and anxiety causing a lot of my current problems because about 25yrs ago when my anxiety/agoraphobia problems were at their worst, which the Seroxat really helped with and the symptoms disappeared. This time last year I felt my depression coming on again so sought therapy, and since my explosion of nasty anxiety symptoms (which also happened many years ago after the depression set in) last Autumn, I didn't have the autoimmune problems I do now and it may well have upset my whole body ie. adrenals and thyroid, plus I am now 3 yrs post meno! I also learned that as you get older you produce higher levels of cortisol anyway but nothing on the scale mine are.

As poorly as I still am I am still fighting, thanks to your support, and have been in touch with Dr David Clark's office in the States to have a Skype consultation with him next week. After watching so many of his videos he seems to have a better overall understanding. Whether he can help me I don't know. If he can't then I have to admit defeat. Despite trying for the last 8 months I am not able to get myself better, nor was my Endo; and if Dr Clark can't help me, then it just has to be the end because I cannot exist like this for the rest of my days. I can't even get out now because of the agoraphobia and as hard as I try I am finding it very difficult to keep myself occupied and distracted :( I know I am repeating myself but it has to end somewhere.

Since my last post regarding starting the T3, in lieu of what my Endo said about my stress levels lowering it, I haven't actually tried it yet. My thought is to hold off until I speak with Dr Clark to see whether he agreed with what my my Endo said.

I have been working hard to bring my levels down, trying the positive thinking, eating well, keeping occupied, forcing myself to laugh and prance around my lounge like a lunatic to help boost my serotonin levels. Trying to eat properly although when the anxiety is so bad for the majority of the day, the nausea prevents me from eating properly (which obviously isn't helping).

I have to say, completely "out of the blue" I did have a few WONDERFUL symptom free days over the Bank Holiday weekend, I had lots of energy, felt great and bright mentally. Did some gardening, chores etc., ate really really well and then out of the blue BANG everything came back again after those few respite days. I have have over analysed, as I do, as to why that happened and the only conclusion I reached was that I had overdone things and upset my adrenals and bumped up my cortisol levels which were slowly coming down. I know they were coming down because the anxiety symptoms started to ease off earlier in the day, when it would normally only be in the evenings. But the euphoria of feeling well for at least 5 days just took over I suppose and maybe I didn't pace myself :(

Going back to my latest results:-

1. TSH has risen quite considerably. Clutter mentioned recently that I could be undermedicating. Shall I increase my Levo to 125mcg per day and go back to taking it in the mornings when my stomach is completely empty, rather than at night when I have have nibbled on things?

2. B12 - I am back to taking my 1000mcg Methylcobalmin

3. My Serum Folate has gone very low from where it was in February. What do I do about that?

Apologies for the long post but it's just getting more and more messy with me and I need your guidance and experience please xx


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11 Replies

  • Jefner,

    You haven't messed up, you simply reduced dose too much after FT4 was high in January.

    TSH 15.70 means you are very under medicated. FT4 14.77 is now low in range, and FT3 2.41 is considerably below range. I suspect Hashi's is messing with your levels too. You may find 100% gluten-free diet helpful in reducing symptoms and antibodies.

    You need to increase Levothyroxine by 25mcg every 6 weeks until TSH is 1.0 or lower, OR add some T3 to your current Levothyroxine dose, one at a time, not both. Taking Levothyroxine at bedtime (as long as it is 2 hours after eating and drinking) normally improves absorption of Levothyroxine. If you like to snack at night go back to taking it in the morning an hour before breakfast.

    Ferritin 89 is optimal. B12 is optimal around 1,000 so it is good you have resumed supplementing. Take a B Complex vitamin to improve folate and boost the other B vits.


    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.

  • Hi hun, I was also alternating between 75 and 100 on my last test which showed quite a high FT4 of 20.63 with my T3 still dropping and my TSH starting to creep up. I am sure changing my T4 intake to bedtime has had an effect unless it's the damn beta blockers and upping my anti depressant dose that has done it. I do nibble late at night because of my cortisol levels but do try and leave at least 2hrs before I have my Levo.

    Have been gluten free since January hon and I also take a B supplement and have some fruit smoothie drinks that are packed with B's as well.

    Really feel I am fighting a losing battle :( Still can't suss out why I had those really good days!!

  • Jefner,

    It could be Hashi flare and beta blockers and upping ADs. Whatever the reason dose needs increasing now. If you think taking Levothyroxine at night is affecting levels go back to dosing in the morning. I don't think it will make any difference.

    Look on the good days as a bonus. I was thrilled when I first had some good days because it meant I could feel well and even though it didn't last I knew I would feel well again.

  • "Look on the good days as a bonus. I was thrilled when I first had some good days because it meant I could feel well and even though it didn't last I knew I would feel well again"

    Yes they boosted me because I know I could feel well but it's so infuriating when you go downhill and don't know why. If I knew why I could do something about it. It's just the unknown with Hashi's :(.

  • Why would endo say that additional tsts are discouraged? He must be able to justify his clinical reasoning.

    Your anx / dep is likely to be high if no one is listening to you, and you can not see yourself improving.

    Yes, you have to pace even when you feel well – I know that’s a real bummer !

    Before your “good days” had you eased up activity wise? I mean were you so ill that you did practically nothing? If so, that maybe why you had a few good days - your body was resting.

    I suggest you keep an activity diary for a week or two.

    Score your illness levels on a scale of 1-10.

    1 being the worst you could be, and 10 being the best you could be. Alternatively use a colour code.

    That way you can see if there is a pattern, and with patterns you can work out triggers/ things that help.

    You can do a score according to overall health, or levels of fatigue, or levels of anx/dep. Whatever it is you want to monitor.

    Hope you feel better soon.

  • he has discouraged more tests relating to T3 and RT3 because he says all my problems are in my head basically!

    Before I had the good days I hadn't been active in months but couldn't help myself when I felt well and a burst of energy

  • only Clutter replying? :(

  • Clutter is very wise.

  • I know she is, she has helped me a lot. Was just looking for some other points of view as well from any similar experiences others have had

  • Jefner,

    There are a few replies so people may not feel the need to respond. Post your question again and maybe some other members will see it and reply.

  • Have you been following the posts about Kelly Brogan - ? Maybe she has some helpful pointers for you regarding your medication for depression. Also Dr David Perlmutter - an American Neurologist. Both have websites in their names .... Taking care of and healing the gut is also helpful ....

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