Thought things were going well! : Hi All, New to... - Thyroid UK

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Thought things were going well!

NatalieM89 profile image
9 Replies

Hi All,

New to this group but looks like everyone does a fab job of helping each other out!

Was diagnosed with hypothyroidism in May 2016, doctor started me on 25mg Levo and increased to 50mg and then 75mg based on blood results. I've been on 75mg since March 2017 and the doctor was happy with my last blood results in May 2017 so left me on 75mg. Although also encouraged me to take Vitamin D, B12 and iron supplements as levels were low.

Back in May I felt like I genuinely was starting to feel better, but over the last few weeks the symptoms seem to have returned and feeling absolutely exhausted again.

Just wondered if this sounds normal? Does the body get used to the Levo and it becomes less effective? Any other reasons this could be happening?

Going to try to get to the docs and get bloods checked.

May 2017 Results

T4 level 14.3 pmol/L

TSH level 1.78 miu/L

I don't seem to see a T3 level on the results that I can access.

Thanks for any advice!!

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NatalieM89
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9 Replies
Nanaedake profile image
Nanaedake

Hello Natalie and welcome. Do you have results for thyroid antibodies? They will be listed as TPO and TgAb otherwise known as thyroid peroxidase antibodies and thyroglobulin antibodies. If so, please post them as it will help to understand what is going on. We also need to see the laboratory ranges for all results as they can vary between labs.

There are a number of reasons you may be feeling unwell again but it's hard to say what the problem could be without seeing a bit more information.

NatalieM89 profile image
NatalieM89 in reply to Nanaedake

Thank you, no results listed as TPO or TgAB so I'll look into getting those!

May 2017 Results with ranges and nutrient levels too:

T4 level 14.3 pmol/L (8.4 - 19.1)

TSH level 1.78 miu/L (0.3 - 5.0)

Ferritin 55ng/ml (15.0 - 300.0)

Vitamin D 33nmol/L (50.0 - 150.0)

Vitamin B12 183ng/L (150.0 - 900.0)

Thanks so much for responding. It's so nice to hear from people who are going through the same and know what they're talking about.

SlowDragon profile image
SlowDragonAdministrator in reply to NatalieM89

Your vitamin D is too low. Needs to be at least 70, around 100nmol/L probably better.

How much are you taking? With thyroid issues, especially Hashimoto's we need or use more than average

Your B12 is very low. Do you also have a folate result?

They need measuring together.

Your GP unlikely to think B12 too low as it's "in range" but we tend to need it at top of range

Ask for folate test and for thyroid retest as you are feeling worse. Plus if not had thyroid antibodies tested ask that they are checked

Your likely in need of dose increase

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This keeps TSH at highest, which is all GP looks at

NatalieM89 profile image
NatalieM89 in reply to SlowDragon

This is all so helpful!

Doctor put me on a high dose of Vit D, I'll need to check when I'm back home but I know I could only buy it from behind the counter.

Folate 5.1ug/L (2.5 - 9999.0)

Going to get on to the docs straight away and now I know what I'm pushing for!

Thank you so much

Nanaedake profile image
Nanaedake in reply to NatalieM89

Folate is in range but low, post your B12 and folate results on the Healthunlocked Pernicious Anaemia forum as they are the experts for giving advice about low or deficient B vitamins. Is your diet very poor or you are a vegan? If not, you could ask your doctor to check for and rule out pernicious anaemia. It's common with autoimmune thyroid disease.

Nanaedake profile image
Nanaedake in reply to NatalieM89

How long have you been taking the vitamin D supplement? The usual dose that doctors give is 800iu which if you are very deficient is not enough. There are local area guidelines for each Clinical Commissioning Group (CCG's) you can google yours to find out what they are.

Read SeasideSusie posts to find out how your GP should be treating you and check the dose of vitamin D you have been given is enough.

It would be great to have your free T3 results here. Try the thyroid U.K. site and look for the link to private labs (PS: Blue Horizon had a sale last I checked). The lab ranges are not posted either (they are in usually brackets following your result). But your TSH is slightly above the level we look for here: it should be 1 or even less. And all labs need to be done early as possible, after fasting (water OK) and no Levo 24 hours prior. This give the most accurate results. And see about getting your nutrient levels from your GP - they are folate,ferritin, Vit D and B12. They are often deficient as we tend to have malabsorption/gut problems - and as a result our dose is not effectively converted.

PS a gluten free diet is often recommended here as it can help reduce antibodies that impair conversion.

silverfox7 profile image
silverfox7

It is often the case that with an increase of medication we feel much better, after all that's what the increase is for but if the increase isn't enough we later feel bad again increses though should be don't in small increments of 25 mcg so Iour bodies can cope with that and less likely if we are near our best level to start with hyper symptoms which tell us we are taking too much. So for what you say you are now ready to. E retested and possible needing another increase or if not far off better results may be an increase every other day if you are. Near the fine tuning stage. So what you are experiencing isn't unusual but is just showing that you need more bloidsas you aren't at your best dose for you yet.

greygoose profile image
greygoose

I agree with silverfox. It isn't that the body gets used to it so it becomes less effective, that's not the way hormones work. It just means that you're ready for another increase. :)

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