Feeling so down after months of trying everything. Would really appreciate advice on latest bloods.

[Kipsy]

Apologies for a long post. As some of you may know, I have tried so hard to help myself since Hashis diagnosis last March. I’ve been gluten free and mainly also grain free (which I find such hard work) since April, I’ve followed numerous protocols on the advice of a functional nutritionist to heal my gut and I’ve followed both direct and indirect advice on here about vitamins etc. My latest bloods make really depressing reading and I feel rubbish. No energy, very low mood, putting weight back on, dry skin etc etc.

24/3/17 diagnosed with Hashimoto’s:

TSH 9.75 (0.27-4.20)

T4 11.3 (9-19)

TPA 1264 (<60)

Started 50mcg of thyroxine in April 2017

9/5/17:

TSH 11.14 (0.27-4.20)

T4 13.56 (12-22)

T3 3.96 (3.1-6.8)

TPA >600 (<34)

Thyroglobulin antibodies 747 (<115)

21/6/17:

TSH 3.6 (0.27-4.20), dose upped to 75mcg

8/8/17:

TSH 3.29 (0.27-4.2)

T4 17.1 (12-22)

T3 4.08 (3.1-6.8), dose upped to 100mcg

TPA >600 (<34)

Thyroglobulin antibodies 543 (<115)

6/10/17:

TSH 0.89 (0.3-4.2), felt good but asked GP to up dose to 117mcg

30/11/17:

TSH 0.013 (0.27-4.2)

T4 33.9 (12-22)

T3 7.64 (3.1-6.8), felt overmedicated. Dropped dose to 87mcg

TPA 534 (<34)

Thyroglobulin antibodies 820 (<115) As these had risen from 543 in August, I now wonder if I’d just experienced a Hashis flare.

Active B12 >256 (25.1-165)

Folate 19.98 (2.91-50)

25 OH Vitamin D 86.6 (50-200)

Ferritin 117 (13-150)

15/1/17:

TSH 0.922 (0.27-4.20)

T4 16.3 (12-22)

T3 3.18 (3.1-6.8)

So, my T3 is now the worst it’s been since I started thyroxine despite all the months of effort. I feel rubbish and despondent!

So, this is my action plan but I’d love to hear your thoughts.

1. Increase thyroxine by 25mcg from 87mcg to 112 mcg by taking 100mcg daily and, every 4th day, an extra 50mcg. This is almost the same as the dose of 117mcg I’d been on when I was overmedicated in November though. Am I right in thinking that that was very likely a Hashis flare rather than too much thyroxine???

2. Switch to taking thyroxine in the morning an hour before food and two hours before supplements (or 4 hours for iron/ Vit D/ magnesium?) I have been taking it at bedtime but we now eat so late that I suspect my stomachs isn’t empty enough for me to absorb enough. Some nights it hasn’t been two hours.

3. Consider taking 1000mcg of Vit C with the thyroxine to aid absorption.

4. Retest (more expense 😞😞) in 8 weeks. If T3 is still rubbish by then, seek advice here about sourcing T3. This isn’t something I particularly want to do.

5. Try going dairy free although if I do too many things at once, I won’t know what’s helped.

Any other ideas anyone?! Or comments on anything above? I’d so appreciate some help. Thank you in advance.

Kipsy

[Clairewalker751]

Hi Kipsy sorry to hear your not feeling good despite your huge efforts! I'm no expert as was diagnosed about the same time as you can I ask why you're not wanting to add T3? For now with those results I would up my levo and cut out dairy? For a month or so then try some cheese? I found thyrogold very easy to get hold of and one order lasts me 6 months I just take 1 cap in the morning with 75mcg of Levo?

[Kipsy in reply to Clairewalker751]

Dear Claire

So good to hear from you. Thank you. I’m scared to go it alone without a GP approving, worried that I won’t be able to source it (you read so much in here about people struggling to get it), worried how expensive it could be (but let’s face it, I’ve spent so much money already it might not feel too bad!), scared that I don’t know how to find the right dose etc etc. Would you mind PMing me with a bit more info re cost etc and how to get it when you get chance, please? I’d be so grateful. There’s no rush though.

Take care! X

[Clutter]

Kipsy,

I wouldn't expect an additional 13mcg daily to greatly increase FT3 which is bottom of range so why not increase dose by 25mcg daily? As you said, you may have had a Hashi flare causing a hormone dump previously.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.

[Kipsy]

Clutter thank you very much indeed for replying. You're one of the people I hoped I'd hear from. Maybe I have misunderstood you but I'm intending to increase by an average of 25mcg daily from 87mcg to 112mcg. The way I figured of doing this is 100mcg a day plus 50 mcg every 4th day. Does that sound ok?

Thank you

[Clutter]

Kipsy,

100mcg/125mcg alternate days averages 112.5mcg.

[Kipsy in reply to Clutter]

Yes good point! I have 50 mcg tablets but will use my trusty pill cutter! Thank you Clutter . Do you think it's too early to seriously think about sourcing T3?

[Clutter in reply to Kipsy]

Kipsy,

I'd wait and see how you do on the increased Levothyroxine as FT4 was less than halfway through range. If FT3 isn't much higher after the dose increase then adding T3 will probably be beneficial.

[Kipsy in reply to Clutter]

Great advice- thank you so much x

[Marz]

Maybe next time you have tests done also check Folate - Ferritin - VitD. No point in testing B12 if supplementing as results will be skewed 😊

When the sap begins to rise you will feel better ! Spring is on its way ....

[Kipsy in reply to Marz]

Hi Marz - thank you! Lovely to hear from you. I last had those done at the end of November. How often would you recommend repeating them? X

[Marz in reply to Kipsy]

Ooops - sorry missed those results .... If increasing your T4 does not improve things then I would consider adding in some T3. We all will guide you .....

[Kipsy in reply to Marz]

Thank you Marz - I'm so grateful when you say things like 'we will all guide you.' It feels like a real lifeline when things are low. Today's results were a shock. Wretched thyroid!!!!!

Would you recommend generally waiting 6 months before retesting all vitamins?

[Marz in reply to Kipsy]

It is often reported that vits and minerals take a good 3 months to show improvements. Really depends on the ability to absorb well though. I would go for the increase others have suggested and then test again in 6/8 weeks.

Hope you feel better soon. Time to book another holiday to Crete ....😎😎😎

[Angel_of_the_North]

I would just go for a 25 mcg increase each day to 125mcg - with option 2 (as free T4 isn't in top 1/4 of range) or add some T3 (do a new post to ask people to PM you with sources). If your carbs are too low you don't convert to T3 as well. The November result was probably a flare as you were still undermedicated in Aug.

[Kipsy in reply to Angel_of_the_North]

Angel_of_the_North Thank you for replying! Can I please check I understand you correctly- I've been on 87mcg for the last 6 weeks since I looked overmedicated (but what was probably a Hashis flare, as you said). Before that I was on 117mcg. Are you suggesting I go straight from 87 mcg to 125 mcg? I'm happy to do so as T3 is so depressingly low but I felt horrid during the Hashis flare so just want to check you think it's ok to raise by 38mcg in one go? Huge thanks in advance- really appreciate your input.

[Angel_of_the_North in reply to Kipsy]

I'd certainly try it, or start with alternate days for a week or so and then every day, as you probably shouldn't have officially/permanently been reduced to 87 and should have been on 125 when you were on 117.

[Kipsy in reply to Angel_of_the_North]

I’m so grateful- fab advice thanks ever so much. Feeling much more positive 😃😃😃

[Kipsy]

PS thank you for pointing out about the carbs- my nutritionist is adamant that I need to be grain free to decrease antibodies but then I'm only getting carbs from veg which isn't as good for conversion I guess.

Clairewalker751 has inspired me to have more gluten free rice/ pasta and give up dairy rather than trying to be completely grain free.

[Angel_of_the_North in reply to Kipsy]

Well, I don't eat any grains (just seeds and veg) but don't have Hashis and my TSH doesn't do much anyway as I have secondary hypo. Gluten-free stuff is revolting. I still eat some rice, quinoa and buckwheat (not grains - seeds). if you are not sensitive to nightshades there are plenty of carbs in potatoes. However, lots of people seem to do well on a ketogenic diet. I think you need to either eat enough carbs or eat very little and run on fats.

[Kipsy in reply to Angel_of_the_North]

Thank you! I think I've been running on fats as my diet seems to have consisted of mainly nuts in some shape or form but sometimes I've been tempted & had a GF pizza/ pasta/ rice/ potatoes (don't particularly like them unless they are chips or mash on top of a cottage pie!) I've cooked from scratch every single day (twice a day at weekends plus something different for the children) and a big part of my day is cooking. I don't mind as I know we're all eating good food but sometimes I long for the convenience of just grabbing a sandwich!

I am so grateful for your help the doses yesterday- thank you so much. Feeling so much more positive now I have an action plan. Wish someone would start a forum like this for the menopause!!

[Angel_of_the_North in reply to Kipsy]

Running on fats is often better if you need to lose weight, but it does take your body time to get used to it and adjust itself - and you have to be religious about it and get the proportions of fat and protein correct, as too much protein just gets burned as if it was sugar and messes it all up.

[Marz in reply to Kipsy]

Woke up with a thought ! Members often mention needing more levo during the winter months too. Must be the lack of sun again 😎

[Kipsy in reply to Marz]

Oh yes I remember reading that now! Good point. I really appreciated everyone's support yesterday- it turned the day around. Am feeling much more hopeful & took 100mcg last night and have just had another 100mcg as I'm swapping to morning doses. I shall follow Angel of the Norths advice to alternate 100mcg and 125mcg for a week then stay on 125mcg. Hopefully that will sort me out!!!

Hope you're getting more sunshine and blue skies today! It's very windy & icy here in Blighty. We've booked a holiday in Cephalonia for July- can't wait- but Crete would have been equally nice. Enjoy, Marz and take care. Thanks again. X

[Marz in reply to Kipsy]

Always good to have something wonderful to look forward to .... glad you are feeling stronger today.

[Zeitgeist]

Hello Kipsy, personally I wouldn't get too hung up on what your T3 levels are.

I was diagnosed with Hashi's 8 yrs ago and my T3 levels have only ever been just within normal range. That includes a period of 18 months when I was taking T3 as well as thyroxine. The extra T3 barely made a difference to my total T3 and I did not really feel a whole lot better during that period. When I stopped taking the additional T3 I felt no worse.

When I upped the T3 to a higher dose I suffered from tachycardia which was horrible.

Reading your post it sounds as though you felt good on 87 mcg of thyroxine back in 2017 so I am not sure why it was increased at that point? The way you feel in yourself is what matters more than anything, more than the numbers...and if you feel good then stick with the dose.

If you have food allergies/ intolerances (as I do) the only things that have helped me signifcantly are cutting out dairy totally and being on the FODMAPS diet. Being dairy free got rid of skin itching and eczema and being on FODMAPS has hugely reduced the IBS symptoms.

Good health and best wishes to you,

Zeitgeist x

[Kipsy in reply to Zeitgeist]

Thank you so much! I felt quite good on 100mcg but felt there was room for improvement. The hashi flare then threw everything out of balance although I had bags of energy and positivity. I just want to get back to feeling motivated to see old friends whom I've been awful about bothering about. I don't look forward to anything now and my life has shrunk to looking after the house, looking after the family & walking the dog. The few weeks during the Hashis flare when my T4 and T3 levels weee over range were horrid in terms of sleeplessness etc but I was back to my old self in terms of cheerfulness! Everyone commented on it & I literally felt I could have run a marathon. I lost a few pounds and my clothes looked great etc etc. I've recently cut out dairy as was getting pains after eating it so thanks for your comment on it. Hoping to get my mojo back soon!!