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Autoimmune disease

How long to balance hypothyroidism?

22 replies

RC000 · 04/08/2017 08:14

Hi all,

I'm 32 and was diagnosed with hypothyroid after having my first child - about a year later as I felt like I was having some sort of breakdown!

The doc put me on 35 thyroxine to build up dose slowly. 6 weeks later minor improvement in bloods so dose raised to 50. In the 3 months on 50 there was no improvement in bloods at all so I've been raised to 75 for 6 weeks. If no improvement he will refer me to an endocrinologist.

I guess I'm just asking how long it all takes to balance? Feeling really fed up. I know people have to deal with far worse things but this past week I've felt so exhausted, anxious, can't sleep and teary. Don't want my gorgeous toddler to start noticing.

Any words of wisdom? I feel like I could crawl back into bed crying today. Obviously not an option with an 18 month old.

TIA x

OP posts:
RC000 · 04/08/2017 08:20

*initial dose was 25 not 35!

Should have also said my TSH was 22 and T4 9.4
Xx

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jenthehen · 04/08/2017 08:21

Mine has been unreliable for the last 25 years. My best advice is keep going back if you don't feel well, don't put pressure on yourself to do housework etc people don't understand how ill it can make you feel. I'm currently feeling ok. I gave up gluten which seems to have helped me and follow a diet which means I mainly eat lean protein and fresh fruit and veg.

Crumbs1 · 04/08/2017 08:24

Mines never been fully balanced but I've never had endocrinologist appointment either. Currently on 250mcg per day.
I too developed hypothyroidism after first child but it wasn't recognised for ages despite classic symptoms- I was running 5 miles daily but put on 4 stone in a year.
Anyway my dose was eventually increased in steps but I think I started on higher dose than you and certainly it was increased to 300 meg in a few of months. It's been a little up and down on blood tests over the years but generally I feel ok and it's a non issue.

Ginfernal · 04/08/2017 08:26

Honestly? 18 years. Now stable on 250mg but I have no thyroid gland at all as it was removed completely

RC000 · 04/08/2017 08:28

Thank you jen. I do find that people don't really understand it.

My GP is being good and im glad I'm having more tests in 6 weeks. Urgh...

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RC000 · 04/08/2017 08:30

Oh gosh these doses are much higher than mine. Do you know what your TSH and T4 levels were?

I'm not sure i could go gluten free but will get if really helps?

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Naegoodatinterviews · 04/08/2017 08:33

There are lots of good Facebook groups on auto immune and thyroid. Some can be alarming because some people have such poor health, but I find them very informative. Some people do better on a combination of Thyroxine and T3 medication. Not eating gluten seems important as gluten in hypothyroidism.

sparechange · 04/08/2017 08:34

Mine hasn't ever really stabilised, but I have Hashimotos so I think my thyroid is on a slow demise but occasionally splutters back to life for a bit

I have my TSH and Free T4 re-done every 3 months and nearly always have to alter the dose afterwards

My TSH went from 0.9 and 3 in the last 6 weeks, for example

My dose varies from 100-200 in any given year

Crumbs1 · 04/08/2017 09:03

Where do you have yours done sparechange? I too have Hashimotos along with majority of non surgical hypothyroidism and only have an annual test.

RC000 · 04/08/2017 09:12

I have hashimotos too - does this mean it needs more monitoring? Feel very clueless on this I need to read up. Is anyone else's hair v thin? Does it thicken when dose is right?

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Gettingonwithit1 · 04/08/2017 17:58

It's definitely worth pushing for an endo appointment as they can test ft3 too, which is so important. A GP won't put you on ft3 meds without an endo requesting it and some of us really need that to feel well. Us hashis often have poor levels of iron, vit D, folate and B12 so you could ask for those to be tested too. If they aren't half way in range, that'll make you feel pretty bad too.

RC000 · 04/08/2017 19:24

Thank you for advice - really appreciate it x

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VisitorFromAlphaStation · 04/08/2017 19:32

Mary Shomon has written some good books about it, both on the actual condition but also on healthy food and exercises that may be useful.

sparechange · 04/08/2017 21:09

I get mine tested with my GP and also see a private endo as and when I need it. It's £180 per appointment but I only need 1 or 2 a year and it is the best money I can spend compared to arguing with various GPs

My endo has written a lengthy letter to my GP stressing the important of regular tests and dose reviews and it has worked...

I initially saw an endo when I was pregnant because it was standard process at the hospital for anyone on levothyroxine to have a consultation with them. When she wrote a follow up letter to my GP, it helped make them take it more seriously - I think lots of GPs have a default position to minimise thyroid issues

Thin hair can be a sign of low ferritin which is also associated with hashimotos

You can self-medicate with Ferrous Sulphate tablets and see if it helps. They are a couple of pounds a pot in Boots (behind the counter so you need to ask the pharmacist) and if you take them with orange juice, the vitamin C helps the absorption

RC000 · 05/08/2017 07:22

Thank you - is ferritin iron? I just googled and iron supplements popped Up?

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PaintingByNumbers · 05/08/2017 07:31

Why did you start on such a low dose and increase to only 75? Are there other health issues or does the gp think it is related to pregnancy/birth? Try increasing more until tsh is under 1, I think the norm is about 125mcg?

Checkedmat · 05/08/2017 07:40

I'm currently on 175 in second pregnancy - usual dose for me is 125 but it took a while to get there as I only started on 25 too. This time the endocrinologist put me on 25 Ug vitamin D (available OTC) as well as the standard pregnancy vitamin D tablets I'm taking, which already have 200% the RDA in! This has made a massive difference to my energy levels. She said after pregnancy and 2 years breastfeeding i was very deficient and I should carry on taking it. I'd second getting this tested too if you can. She said the majority of people in the UK are deficient due to our latitude and weather & she'd like everyone to have it but it's not prescribed so people have to buy it.
Also be careful to take the levothyroxine on an empty stomach, 30 min to an hour before eating & not with any other supplements or medication. Soya in particular will hinder uptake.

Helspopje · 05/08/2017 07:45

You are supposed to start thyroxine replacement and build up guided by tests
Repeat interval is supposed to be each 6 weeks
Not sure 25mcg was a usual start dose though

I've had post partum thyroiditis after each baby and been hyperthyroid for a fee months then had hypothyroidism lasting 1y to 18m (and failing to conceive or miscarrying in that time) then a retuning to normal thyroid function when baby was 2-2.5y old or thereabouts. Not this time though as went from tsh

Checkedmat · 05/08/2017 07:46

Sympathies by the way, it feels awful when it's not balanced, and it does take ages only going up in 25 mcg increments every 6 weeks. I'm not sure why they do this. I hope you feel better soon.

Nanna50 · 05/08/2017 07:54

Asking how long it takes to balance a thyroid is akin to asking how long is a piece of string? Before this happened to me I thought thyroid made you fat or thin but it is way more important than that it's like your body clock and when working is a very clever gland that fluctuates constantly.

Synthetic hormones can never mimic or replace natural thyroid function, this is why some people seem to have a small dose and feel fine and others spend their lives having tests, altering the dose and trying to balance the TSH, T3 &T4 .

Your GP referring you to an endocrinologist is a good thing because you will be treat as an individual with a more holistic view of your condition. It should also be about how you feel and other symptoms and not just numbers.

I struggled until my GP referred me and I was given so much information about thyroid function, the numbers and comparisons explained. And like a pp my consultant wrote to my GP and I now have tests every 3 months or so and the numbers are never the same so the dose is discussed and altered.

We rarely know our healthy numbers before hypo or hyperthyroidism therefore we never really know what numbers we are aiming for to feel well IYSWIM.

thesleepingdogsarelying · 05/08/2017 08:07

Can I urge you all to sign and share this petition to improve thyroid treatment in uk, particularly the withdrawal of t3

www.change.org/p/itt-campaign-group-improve-thyroid-treatment-for-millions-of-people-stop-the-withdrawal-of-t3

RC000 · 05/08/2017 18:39

Thank you all for your advice and support. It does make you feel awful and I think unless you know it's hard to relate. I think my GP started me off on too low a dose given my bloods but there we go!

Thank you 're advice 're endocrinologist and vitamin D - very interesting.

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