New here, advice about tests/Levothyroxine appreciated!

[LSP68]

Hello, I'm new on here and to the world of thyriod problems.

I'm a 50 year old female, perimenopausal and have been feeling increasing unwell over the past few years. Put it down to entering the menopause and finally decided to explore HRT. I went to the Doctor in June with the following symptoms:

Fatigue, low mood, mood swings, poor memory/recall, aches, restless legs, low (well no) sex drive & constipation.

Doctor thought maybe Thyroid related so blood tests done:

TSH 8.047 0.570 - 3.600

Free T4 9.5 7.9-14.0

Ferritin 7 11-307

Folate 14.3 >4.0

Vitamin B12 402 >203

Haemoglobin Estimation 124 115-165

Thought TSH may just be a blip so test repeated earlier this week:

TSH 8.977 0.570 - 3.600

Free T4 10.8 7.9-14.0

Both TSH and Free T4 have increased slightly over 2 months.

Doctor felt the TSH was only slightly elevated but agreed reluctantly, (even though, as she pointed out, T4 was well within range), to prescribe 1 x Levothyroxine 25micrograms daily to see if it would help with my symptoms together with 2 x Ferrous Fumarate 210mg daily to boost my Ferritin levels. To be taken for 3 months and then to repeat the tests.

Does anyone have any insights into these test results? Has anyone any experience of taking a low dose of Levothyroxine? Can I expect to feel any better anytime soon? Any advice or thoughts would be greatly appreciated!

[greygoose]

Well, let's just say that I disagree with your doctor. It gets a bit monotonous insulting doctors after a while, because they're all the same : they know nothing about thyroid!

Given that you are hypo when your TSH is over 3, she's very wrong about it being 'only slightly elevated'. It is elevated. And your FT4 may be in-range but it's too low in the range, because the range is too wide. Although it's not as wide as some we see. But, your FT3 is probably low, although she didn't test it, and that is why your TSH is so high. You are hypo.

I'm afraid to say that no, you probably won't feel any better on such a low dose of levo. In fact, you could feel worse, and your FT4 could drop and your TSH rise on that dose. But, the NHS, in all its wisdom, has decided that people over 50 are old, and old people should only have small starting doses - and perhaps even low doses forever. So, they give them enough thyroid hormone to stop their thyroid production, but probably not enough to replace it. And, leaving you on that dose for three months, ought to be a hanging offense! You should be retested after six weeks and your dose increased by 25 mcg.

I disagree with her about your ferritin, too. It's so low that she should be investigating why, and giving you iron infusions, not just throwing pills at you. Did she happen to mention that you must take the iron pills at least four hours away from your levo? Did she give you any indication how to take your levo at all?

I think you should go back to her tomorrow, and insist on proper treatment. She is being negligent. Or, better still, try and see someone else, someone who has a clue what they're doing.

Oh, and your B12 is a bit on the low side, too. It would be better over 550.

[LSP68 in reply to greygoose]

Hi greygoose,

Thanks for your reply. I'm finding the honesty on this site so refreshing!

It's so sad that this seems to be such a misunderstood condition by the 'professionals'.

Thanks for the clarification though, I think maybe I should do some further research (on everything you mentioned) and go back (and see another doctor) armed with some information. I really know so little about the condition, it's all come with a steep learning curve.

She did instruct me when to take the Levo (before breakfast) but nothing about the iron, thankfully I read the instructions in the packs and am now well informed.

At least I know what to expect....sounds as though I've a long road ahead of me!

Thanks again

[greygoose in reply to LSP68]

I'm afraid it's a very long road! Doctors just don't learn much about it in med school - and probably what they do learn is wrong! And they don't learn anything about nutrients, either. You really do need to sort that ferritin out - get an iron panel, or something.

Did it say on the packet to take half an hour before breakfast? That's what it normally says. But, in practice, an hour is better. And during that time, just drink water.

[LSP68 in reply to greygoose]

I will focus on my Ferritin first. it's the one thing I kind of understand and have the control to try and correct!

It does say 30 mins but I'll be sure to leave it an hour, thanks for that.

[greygoose in reply to LSP68]

You're welcome.

[DippyDame]

You have arrived at the right place for the best advice!

I would add that your GP may very well suggest you also have Fibromyalgia , CFS or ME....don't accept that diagnosis.

My fibro/CMS proved to be a badly medicated underactive thyroid of very long standing and at 73 with the help of knowledgeable folks here I am now recovering slowly and well. It's never too late!

There is no quick fix for thyroid disorders (as headache/paracetamol) it takes effort, patience, determination and time but once you carefully follow advice here and understand better health is achievable you will cope and feel much better.

Good luck

DD

[LSP68 in reply to DippyDame]

Thanks DD, learnt loads already!

I'll look into your suggestions, I think the more I find out myself about not only Hypothyroidism but other possible conditions the better, sadly, I don't think my GP is really interested.

I've accepted I'm in for the long haul, guess I've not felt well for years so it's never going to be a straightforward road to recovery. Thanks for your encouragement and I wish you very well on your continued road to recovery.

[SlowDragon Administrator]

As greygoose says your ferritin is EXTREMELY low and should have begun treatment immediately after that result. A full iron panel to test for Anaemia and an iron infusion would improve dire level far more rapidly

Thyroid hormones need good ferritin levels so it's important for levels of ferritin to improve

Eating liver or liver pate once a week should help improve levels too

Very important to also test vitamin D. Low vitamin D is extremely common with hypothyroidism.

If Gp is unhelpful then getting tested via NHS postal kit £29

vitamindtest.org.uk

You also need both TPO and TG thyroid antibodies tested to see if cause of hypothyroidism is due to autoimmune thyroid disease

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's.

Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription. Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

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 gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

[LSP68 in reply to SlowDragon]

Thanks so much! Think your advice re getting private blood test done is spot on, I don’t hold out any hope of convincing my GP to test further at this time. Thanks also for the links, I’ve got a lot of reading to do!

[SlowDragon Administrator in reply to LSP68]

Suggest you go back to GP and request full iron panel as ferritin is so low.

And get vitamin D tested asap too

Thyroid bloods should be retested 6-8 weeks after starting on Levothyroxine

25mcg is small dose, but if aged 50 or over is recommended starter dose

NHS guidelines. Note most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

beta.nhs.uk/medicines/levot...

[LSP68]

Thanks, I should have gone to the Drs a couple of weeks earlier as I only turned 50 last week! Maybe I would have been given a higher dose 😆