VERY TIRED

[Mitch70]

Hi everyone, looking for advice for my daughter , she is 26years old and has been on levothyroxine 25mcg for 8 weeks now , her latest TSH reading is 1.8 .. in range .. ( previous reading was 8 ) was advised just to stay on 25mcg but she is extremely tired all the time now .. sleeping most of day on her days off and after work .! Should she not be feeling better if In range ??? She has an appointment later on today as her eyes are very dry underneath .. could she ask for an increase of levothyroxine ?? Thanks in advance ..

[ShinyB]

Hi Mitch70, I'm still on a big learning curve myself but from what I understand it's preferable to get the TSH to 1 or under if you're on replacement thyroxine. I would imagine she needs a dose increase. She could try printing off this statement by Dr Toft from the BMA book “Understanding Thyroid Disorders”, “The consensus is that enough should be given to ensure that levels of T4 in the blood are at the upper limit of normal or slightly elevated and those of TSH at the lower limit of normal, or in some patients undetectable.” There is a better statement but I've spent ten minutes looking and can't find the link. Someone else will hopefully be able to supply it.

It would be worth asking for her thyroid antibodies to be tested and also basic nutrient levels including Vit B12, Vit D, folate, ferritin, which are all involved in how well the thyroid works. Some GPs seem to be better than others in doing this. If you don't get anywhere, you could look at getting these tested via a private blood test through Blue Horizon or Medichecks.com.

i've read that 25mcg is a very minimal starting dose. I think typically it can take up to 200mcg for people to feel better.

As I said, other people will be able to give you more informed information. I'm still getting my head round everything, which is not proving easy with my brain fog!

[ShinyB in reply to ShinyB]

Ideally you'd also want her free T3 and free T3 to be tested too. I had to pay privately to get these done but some GPs might be more helpful than mine...! There's a lot of politics and cost savings going on around T3 in the NHS so it can be difficult to get them done on the NHS, sadly.

[Mitch70 in reply to ShinyB]

Thank you shinyB . I will try n get a copy before I go ;)) lots to learn .. Thx again x

[ShinyB in reply to Mitch70]

That should have read free T4 and free T3! There is sooo much to learn!! It's definitely not as simple as the TSH measurement, much as GPs and Endocrinologists seem to believe it is..... best of luck to you and your daughter. Are you going to go in with her?

[Mitch70 in reply to ShinyB]

Yes I’ll be there . Your absolutely right so much to learn . Thank you for your support and advice x

[ShinyB in reply to Mitch70]

This link tells you what should be tested, including two types of antibodies. It's worth asking but many GPs won't test these. She probably stands a better chance of getting all the tests done with you there to stand her corner.It's harder for them to fob off the patient if she or he has someone with her! medichecks.com/thyroid-func... .

[ShinyB in reply to ShinyB]

If the GP is unhelpful, it would be worth asking if she can have a referral to an endocrinologist. They, at least, are more likely to test T4, T3 and antibodies and nutrients. You might strike lucky with the GP today though. Sometimes locums can be more helpful! Let us know how you get on

[Clutter]

Mitch70,

Your daughter could ask for a dose increase. Symptoms can lag behind good biochemistry by several months. 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 daughter's GP.

Your daughter could also ask her GP to check ferritin, vitamin D, B12 and folate which are commonly low or deficient in hypothyroid patients and can cause symptoms similar to hypothyroidism.

[Mitch70 in reply to Clutter]

Thanks for the link clutter , I’ll ask for vitamins to be done 😊

[greygoose]

If her doctor is only testing the TSH, then he knows nothing about thyroid.

TSH is a pituitary hormone, not a thyroid hormone. The TSH can appear to be perfect - if such a thing as perfection exists - but the actual thyroid hormones - T4 and T3 - can still be too low to make her well.

25 mcg is only half a starter dose. Unless your daughter has a heart condition, she should have been started on 50 mcg. And her doctors should at least be testing her FT4 and going by that, rather than her TSH. Is it possible for her to see another doctor? Because this one is going to keep her sick.

[Mitch70 in reply to greygoose]

It’s locum doctors we see all the time much to my annoyance.. I will certainly ask for an increase for her as at the moment she has no quality of life for a young girl . Could I ask them to test T4 or is that a private test ? Thank you 😊

[greygoose in reply to Mitch70]

Ask, by all means. It should be done automatically.

[bluebug in reply to Mitch70]

Free T4 can be tested on the NHS.

Free T3 is only tested on the NHS if an endo insists (and s/he may have to request this multiple times) or the Free T4 is out of range.

However most doctors, whether GPs or endos, don't seem to have a clue on what the Free T3 test results mean.

If the locum GP cannot help you with any of the tests then pay for it privately otherwise your daughter will end up suffering for years. Some GPs do accept private test results, while others are ignorant and don't. They don't understand private tests are done in the same facilities as their NHS tests. However if the private results show results out of range then those who don't are very likely to retest you again.

[SlowDragon Administrator]

I see you are hypothyroid too. Do you have Hashimoto's? If so it's pretty likely your daughter does too. Has she had antibodies tested to confirm

If she does, then consider gluten free diet

Also ask to test vitamin D, folate, ferritin and B12

25mcg is tiny dose, and often makes patients feel worse. So ask for dose increase

[Mitch70 in reply to SlowDragon]

Not been diagnosed with hashimotos yet although my antibodies were high , a referral went in to hosp , their response was no referral required as now “in Range “ TSH 1.8’.. feeling a lot better and making changes ie gluten-free diet . Your right tho she may have hashimottos Thanks for your advise 😊

[Mitch70]

Ok so just back from the doctors with my daughter . Was told she couldn’t increase her dose as “” guidelines is blah blah blah” and that it’s normal to feel tired as it’s early days and that she is in the normal range !! ! Wasn’t interested in the article from dr toft either . On the plus side they will check vits at next blood test. Feeling bit deflated for her as I know only too well ( also hypo ) that all Drs have a different opinion.

So she has to wait 6 weeks now for new blood test ;(

[ShinyB]

How disappointing! It does apparently take a while for the full effects of any thyroid replacement to be felt, but even so... There is lots of information on here about hashimotos - worth having a read (there's a search box at the top) and perhaps both of you try some of the suggestions. Will they test her antibodies too at the next test?