3 years down the line...

[Aeracognie]

Hello all!

It's been 3 years since I first posted on here, and i thought it was time to catch up.

Thank you to everyone who helped me on the start of my journey. Since then I have been put on annual tests (my next is due in a couple of months), I have continued on a low dose of Levothyroxine, and I was able to come off my anitdepressants in time for my wedding, and have stayed off them ever since.

I feel much better than i did 3 years ago, and so I wanted to put in a positive progress post to show any others who are where i was it can and does get better. I'm still not 100% functional, I will always have health problems and have to consider things others might not, but the small things have definitely added up.

I commute up to 4 hours a day with my husband. When i was first diagnosed, he did nearly all the driving because I could not cope. Now I do my fair share most weeks. I can do housework at the weekends, and have settled into a routine that means I don't lose most of my spare time to catching up on sleep.

I have joined Slimming World, and in the last 6 months I have lost 3st! It's the first time in 10 years a diet of any kind has worked for me and it is helping even more. I can go on long walks, and my family have often commented on the difference in my ability to join in with events these days.

I have been gluten free for 3 years now, and am very pleased that in that time there has been so much growth in what is available. It's one of the best things I have ever done for myself, and i am certain it contributed heavily to the easing of certain symptoms. Gone are the days when an upset stomach was the norm!

Now my husband and I are looking to start a family. I know it is a good idea to get a check up on my levels, and this time I am actually going to insist on a printout as I have recently changed surgery again. I need to inform my doctor of our plans, but does anyone have any tips for someone starting on this path? I want to make sure we are in the best possible position, and i know there are risks if my thyroid is not being properly managed. My particular brand is Hashimoto's thyroiditis, I have been on 50mg of Levothyroxine for the last 3 years, I am currently taking Seven Seas "Trying for a baby" folic acid supplement but no other supplements. I have a Ventolin inhaler which I use maybe a few times a year, and I have not been on any medical contraceptives for over a year now.

Thank you!

[humanbean]

You should read this link on the differences between folic acid and folate :

chriskresser.com/folate-vs-...

and then you might want to switch your supplement to something containing folate rather than folic acid.

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One thing you really should do if you can afford it is get some private testing done for both thyroid and nutrients. Getting both optimised before you conceive will improve your chances of conceiving in the first place, will reduce your risk of miscarrying, and will be beneficial for the long term health in any offspring.

Look for links on the subject of "Vitamin D deficiency in pregnancy", "iron deficiency in pregnancy", and for other nutrients.

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To get private testing done, the two most popular companies on this forum are Blue Horizon Medicals and Medichecks.

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medichecks.com/thyroid-func...

medichecks.com/how-it-works

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bluehorizonmedicals.co.uk/t...

bluehorizonmedicals.co.uk/a...

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Note that Medichecks has a special offer on until the end of the month.

More info on these companies from Thyroid UK :

thyroiduk.org.uk/tuk/testin...

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Once you have the results of any testing post them on the forum in a new post and ask for feedback.

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Good luck!

[Aeracognie in reply to humanbean]

Thank you for this, I will be trying to convince my GP to do a full range of tests in line with NICE but if they won't i will look into those links. And i will definitely be posting my new results, I have received more guidance on here than any GP i have seen.

[shaws]

I am glad you have had a few positives since being on levothyroxine.

Many women with a dysfunction of their thyroid gland have difficulty getting pregnant or miscarrying so I would suggest a Full Thyroid Function Test and it is amazing you feel fine on 50mcg of levothyroxine, which is an initial dose and is usually increased by 25mcg of levo every six weeks until TSH is 1 or lower.

A Full Thyroid Function test consists of TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

It should be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levo and the test and take afterwards. This helps keep the TSH at its highest as it drops throughout the day.

We feel best when TSH is 1 or lower but I think for pregnancy it is between 1 and 2. Some doctors keep it somewhere in the range. Free T4 and Free T3 should be towards the upper part of the range but these are rarely tested. On the following link read about FT4 and FT3.

thyroiduk.org.uk/tuk/testin...

This is about TSH in pregnancy.

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

Your GP should also test B12, Vit D, iron, ferritin and folate.

Get a print-out of your results with the ranges and put on a new post for comments.

To lose weight is a big achievement too which many find very difficult. You are probably a good converter of levothyroxine (T4 and inactive) into liothyronine (T3 and the only Active thyroid hormone).

[Aeracognie in reply to shaws]

I was heavily symptomatic at the time of my (extremely reluctantly given) diagnosis, but my levels were all borderline so my doctor was only willing to put me on a low dose, and that was only given because of my TPO result being "indicative of developing borderline hypothyroidism". Since then I have only been informed that everything is fine and no adjustment is needed. I feel much better than i did before, I still have days and I wouldn't say I am "normal" but it is a vast improvement.

My results on diagnosis were as follows:

Iron Overload Studies:

Serum C Reactive protein level <4 mg/L [0.0 - 6.0]

Serum ferritin level 59.2 ug/L [10.0 - 291.0]

Serum Iron level 14.3 umol/L [ 10.0 - 30.4]

Transferrin level 3.10g/L [2.5 - 3.8]

Percentage iron saturation 20% [16.0 - 50.0]

Thyroid Function Test

Serum TSH level 2.42 mU/L [0.35 - 5.5]

Serum free T4 level 12.4 pmol/L [10.0 - 19.8]

ESR 11 mm [3.0 - 9.0]

TPO 183 iu/ml [0.0 - 60.0]

Vitamin D:

D3 88.5 nmol/l

D2 <5 nmol/l

I have changed surgeries in between my last check and my next, and so I am curious to see how my new GP responds and I will be asking for the detailed printout as I want to know what basis they are making their decisions on, as i live in fear of them trying to take me back off it after such a struggle to get the help in the first place. I haven't seen my results since diagnosis and everything at my last surgery was such a battle i was just happy to be kept on the medication. Now I am at a new surgery and at this new point in my life i want to make sure it is being managed properly.

I find what I have been reading about testing every 6 weeks interesting as I was put on 50mg straight away, told to come back for more tests in 3 months, was told to come back annually from that point as all was fine. There was no steady monitoring for me. So I will definitely be pushing a bit more at this new surgery.

[SeasideSusie Remembering in reply to Aeracognie]

Aeracognie

How old are these results? If they're not recent then there's not a lot of point in me going into detail, best wait for your new results. The only thing I would say is that your ferritin and your Vit D were lower than the recommended levels but not low enough for your GP to do anything about them.

Give me a shout when you have your new results if I don't respond to your post, the forum moves quite quickly and it's not possible to always read every post before they disappear off the page. Put @ in front of my username but leave no space, then I will get notification that I have been tagged.

[Aeracognie in reply to SeasideSusie]

These results are a few years old admittedly, and i haven't had access to my interim test results out of fear of rocking the boat, but i am trying to get hold of my GP to book a new round of tests (as i have also been advised that as I am losing weight i should be having more regular tests as well). I'll make sure to tag you when i get them next lot in, thank you.

[shaws]

The professionals seem not to have a clue except keep the TSH in range - in your case up to 5. Whereas when diagnosed and given prescriptions, the aim is a TSH of 1 or lower with both FT4 and FT3 (the latter rarely tested) in the upper part of the range. You need an increase in dose and I will add in SeasideSusie as she is the best for responding re dire results on vitamins/minerals.

[Aeracognie in reply to shaws]

This is what i find frustrating, because my GP never gave any guidance on that. I was started on the low dose and then just told my levels were fine, and to be honest i was just so glad to be on medication and feeling better than before that I didn't push it in case they stopped it again.

Definitely need to get booked in and see how this new GP will respond to my case. And I am going in armed with all this information so i can start arguing back when i get my breakdown if it isn't what it needs to be.

[shaws in reply to Aeracognie]

They don't like us to bring in 'evidence'. They still stick to the TSH - even when it's in the upper part of the range. However, be cool and calm and persuasive but maybe this link will help:-

thyroiduk.org.uk/tuk/testin...

of course he would have to do the tests recommended but sometimes labs wont if TSH is in range.