Newly diagnosed hypothyroidism - questions ...

[Yellow-Roses]

Hi everyone - I’m hoping for some advice, please! I’m a 58 year old reasonably active, full time working woman. I was prescribed 50 mg levothyroxine sodium in June following blood tests showing TSH 8.82 (0.27 - 4.2), FT4 12.7 (12.0 - 22.0), TPO antibodies 9 = negative, Ferritin 101 (13 - 150) .

The tests were ordered as part of various tests and procedures to investigate an abdominal swelling which has subsequently been attributed to constipation. I was not aware that I had been suffering any symptoms as I had no previous detailed knowledge of hypothyroidism although my mother also had the condition for many years before she recently died. Nevertheless my GP advised treatment which I accepted.

I’ve recently had follow up blood tests TSH 2.03, FT4 15.9 and my GP suggested carrying on with 50mg levothyroxine sodium for the forthcoming 4 months which I accepted.

However, since then (10 days ago) I’ve tried to educate myself a bit more and have considered the range of symptoms in more detail. I’m now wondering whether the constipation was a thyroid related issue. Over the last two years I’ve also been putting up with annoying and aggravating pain and lack of movement in my hip which is made worse by sitting at my work desk weekdays, more recent intermittent knee weakness problems and, since February this year, had my first ever two bouts of UTI in close proximity. Over the last three weeks I now have discomforting aching in my fore arms which has impacted my ability to lift things like a kettle.

I’m planning on going back to my GP but I’m not sure if I should question whether I’ve been prescribed levothyroxine sodium too prematurely or whether I should ask my GP to consider increasing my dose?

Any thoughts or suggestions from others more familiar with this stuff than me would be very welcome!

[greygoose]

Hi Yellow-Roses, welcome to the forum.

You should ask for an increase in dose. 2.03 is to high for the TSH of a person on thyroid hormone replacement. It should be one or under. And, you should try and get him to test the FT3 every time, because it is the most important number.

Most of your symptoms could be down to under-medication. But, also to nutritional deficiencies. You should ask him to test the vit D, vit B12, folate and ferritin.

You certainly weren't prescribed levo prematurely, you were hypo and needed thyroid hormone replacement. But, it often happens that one you start it, new symptoms come to the fore that you either hadn't noticed before, or which weren't there.

If your doctor insists that you should stay on 50 mcg a bit longer - although it is unlikely to make things any better - compromise on six weeks. Four months is much too long.

[Yellow-Roses in reply to greygoose]

Thank you for your prompt reply, greygoose. Your advice is really helpful - I’ve read on here that some people have found it difficult to get T3 tested. To make a case to my GP, I’m wondering what argument I could use to justify the additional test?

[greygoose in reply to Yellow-Roses]

You could say that T3 is the active hormone, needed by every single cell in the body - T4 is a storage hormone, that needs to be converted to T3 - and that it's low T3 that causes symptoms. TSH isn't even a thyroid hormone, it's a pituitary hormone, and once you are on thyroid hormone replacement, the negative feedback link is broken, so TSH is not a good indicator of thyroid status. The FT3, on the other hand, is the most important number, and you are only over-medicated if that is over-range. Also, you need the FT4 and FT3 tested together to know how well you convert.

I don't know if he'll buy it, but worth a try.

[Yellow-Roses in reply to greygoose]

I really appreciate you taking the trouble to reply again - I don’t yet fully understand the complexities of the condition so this is really helpful. I’m not sure I grasp what you refer to as the negative feedback link being broken when on thyroid hormone but I’ll keep reading!

[shaws in reply to Yellow-Roses]

If GP or lab wont do the 'Frees' we have private labs that will do home pin-prick tests and if you decide, make sure you are well-hydrated a couple of days before.

GPs seem to have been instructed that only TSH and T4 are sufficient. They're not when we feel awful. It came as a huge surprise to me that I felt far worse when prescribed than before being diagnosed.

Ideally a Full Thyroid Function Test is:-

TSH, T4, T3 Free T4, Free T3 and thyroid antibodies. GP should test B12, Vit D, iron, ferritin and folate and all vitamins/minerals should be optmum too.

When you quote results you also have to put the ranges, The reason being that ranges differ from lab to lab and it makes it easier to comment upon them.

[greygoose in reply to Yellow-Roses]

The feedback link is where the hypothalamus/pituitary/thyroid communicate with each other to make sure that thyroid hormone levels are kept optimal. The pituitary makes TSH to stimulate the thyroid - Thyroid Stimulating Hormone - which is why the TSH rises when you are hypo. But, once you start taking thyroid hormone replacement, the feedback doesn't work so well. A hypo person has different needs to a euthyroid (normal) person. Yes, it's complicated, and I'm not making a very good job of explaining it this morning! Suffice to say that the TSH becomes a very unreliable indicator of thyroid status, and should therefor not be used to dose by.

[silverfox7]

Keep posting any results you get and we. An keep advising what to do next. The six weeks between between blood tests is because it takes that length of time to get each new dose fully into the system.

If you look on the Thyroid Uk site who run this forum there is a lot of great information on there that your doctor probsbly doesn't know about.

[Yellow-Roses in reply to silverfox7]

Thanks for the reply - I’ll keep reading!

[Lalatoot]

Your follow up blood results look pretty good to me. It takes a while for the full effect of the dose to be felt so you might not be getting the full benefit of it yet. I agree that your other probs may be thyroid related. It affects so much of our bodies. Re the bowel probs have you thought about gluten free?

[MissSusan]

I was diagnosed with Hashimoto’s in April. I’ve had terrible constipation for many years, one bowel movement a week. After 6 weeks on levothyroxine I started to go every day. I was over the moon! But now I’ve gone back to once a week. I’m sure that’s because I’m under medicated.