Advice please: Hello, this is my first post... - Thyroid UK

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Advice please

pastashapes profile image
11 Replies

Hello, this is my first post asking for advice please. Please see Bio for all information thus far after first blood test for thyroid in Oct 23 but will post the info for most recent one below: 5th Jan 8.30 am(tea with milk drank didnt know about water only at that point)

Medichecks

TSH 5.25 (0.27-4.2)

FREE T3 3.8 (3.1 - 6.8)

FREE THYROXINE 9.9 (12 - 22)

THYROGLOBULIN 983 (115)

TPO 134 (0.34)

Advised to see GP. They started me on 50mg Levothyroxine which I have taken for 18 days now. I suffer from chronic pain because of cervical stenosis in my neck and have been feeling awful for sometime. I have a history of osteoarthritis with a full hip replacement 5 years ago. Tiredness increasing as years went on so with this diagnosis and prescription I felt hopeful and a bit vindicated for my constant not feeling 100% and my constant moaning too!

However, I feel awful, have spent almost part of everyday since in my bed. I feel so exhausted/ spaced out, aching and heavy. I feel worse since starting the levothyroxine and really dont know what to do.

I paid for a vitamin check (no Vit d) which is in my bio, as per advice seen on this forum. All said to be in normal range. I havent started any supplements as yet.

Will things improve? I contacted GP last week for advice but no help yet. Hopefully next week.

Any advice would be gratefully received as to next steps. Thank you all in advance.

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pastashapes
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11 Replies
TiggerMe profile image
TiggerMeAmbassador

Hello welcome aboard

Which brand have you been given? Some can cause upset but tbh I don't think anyone actually feels better for taking Levo until you get to your optimal dose 🫤 and getting your hormones sorted is only part of the climb

Folate: 5.5ug/L - 3ug/L or below folate deficiency (3-25)?

Active vitamin B12: 54pmol/L - below 38 suggests deficiency (38 - 210) ?

So I'd suggest you add a good B complex (most of us do) Iggennus Super B or Thorne Basic B are good ones

High antibodies shows you have autoimmune thyroiditis and your thyroid is under attack

pastashapes profile image
pastashapes in reply toTiggerMe

Thank you for responding. The brand is Accord. I can see from this forum that it is a delicate balance to find the right levels of medication but i just feel so much worse than before I started the medication. I guess I should persevere and see how things go as long as I can cope. I wonder whether these, side effects, if that is what they are, will die down the longer I take the medication? Thank you again.

TiggerMe profile image
TiggerMeAmbassador in reply topastashapes

As a rough guide to dosing it's 1.6 x kilo of body weight but you have to move up in not more than 25mcg increased every 8 weeks and smaller increments as you get nearer, I'm afraid there is no quick fix... hopefully you'll turn the corner soon 🤗

Low folate does make you feel dreadful to adding this in will help and make better use of the levo

pastashapes profile image
pastashapes

Thank you so much. Will look to start on the supplements recommended.

TiggerMe profile image
TiggerMeAmbassador in reply topastashapes

Well worth adding some D3 & K2 also as we all need it especially at this time of year 🤗

pastashapes profile image
pastashapes

Will do👍

Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group.

Feeling worse before you feel better, especially on the low doses is very common and almost to be expected unfortunately.

Levothyroxine replaces your own thyroid hormone output and often the lower doses aren't enough to replace what your own thyroid was still producing.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.

Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

TiggerMe has given you good advice regarding vitamins. It is essential to raise levels to OPTIMAL and maintain them there by regularly supplementing. This makes our thyroid hormone work well.

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

pastashapes profile image
pastashapes

Thank you for this. It is reassuring to hear that things may get worse before getting better. I was feeling very much at a loss and a bit hopeless to be honest. I will definitely do the vit D test and then arm myself with the supplements. You advice is much appreciated.

Marz profile image
Marz in reply topastashapes

When replying click onto the blue Reply button first otherwise the relevant person will not be alerted 🌹 Jaydee1507

pastashapes profile image
pastashapes in reply toMarz

Gosh, yes will do so in future, thank you for letting me know

Marz profile image
Marz in reply topastashapes

It can happen easily when we are new ! 🌻

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