Recently diagnosed (Hypothyroidism): Hey, I'm... - Thyroid UK

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Recently diagnosed (Hypothyroidism)

melanieh515 profile image
7 Replies

Hey,

I'm melanie515, aged 27 and have just been diagnosed with Hypothyroidism.

Have been started on 50mg of Levothyroxine and told to come back in 3 months (September 16) for another blood test.

Have been diagnosed with mental health conditions over the years despite insisting I have never felt this was the problem.

I have struggled (like many others) to get a proper diagnosis and be taken seriously by multiple GP's over the years.

I am also trying to conceive and believe this was the reason I was checked for thyroid and vitamin D deficiency on a blood test six month ago. My levels were only slightly out of the "normal" range so came back for two more tests (3 months apart) and finally given treatment this month after a significantly worsened result.

I feel both vindicated and saddened by my diagnosis. I can't believe how bad GP's are to check for this condition and in my case, preferred to put me on anti-depressants for the best part of my adult life.

Now my treatment has begun, I look forward to feeling better and hopefully have a healthy pregnancy in the future.

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7 Replies
Clutter profile image
Clutter

Welcome to the forum, Melanie515.

For maximum absorption Levothyroxine should be taken with water 1 hour before or 2 hours after food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements and oestrogen.

It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose.

If you are still symptomatic ask for a follow up thyroid test 8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

Most people will find symptoms resolve after their TSH drops to around 1.0 with FT4 in the upper range but symptoms can lag a couple of months behind good biochemistry.

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

NICE recommends the TSH of women planning conception and newly pregnant should be in the low-normal range 0.4-2.0 with FT4 in the upper range. Levothyroxine is usually increased by 25-50mcg when pregnancy is confirmed to ensure good foetal development.

cks.nice.org.uk/hypothyroid...

___________________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

shaws profile image
shawsAdministrator

Welcome to our forum melanie 515

You are young too, as I was much older when diagnosed and had children etc.

You are right on joining this forum as we all found out to our cost that many doctors and even endocrinologists don't know how best to treat us. Also, we have had many misdiagnosis of other 'problems' (I have too) which were indirectly linked to low thyroid hormones. Mental affects are one of them but the modern method (if blood test is taken at all) are being diagnosed by a blood test alone when there may have been many clinical symptoms (unknown to many medical professionals).

It is a big learning curve, and the first thing I will say is that three months is far too long for your next blood test.

1. The blood test should always be at the very earliest - don't eat before it (food reduces TSH which is the only thing taken notice of).

2. Leave about 24 hours between your last dose of levothyroxine and the blood test and take it afterwards.

3. Always get a print-out of your blood test results with the ranges (ranges are important due to labs using different machines) for your own records and you can post if you have a query.

Levothyroxine should be taken first thing with one 8oz glass of water and wait about an hour before eating. Food can interfere with the uptake.

I had a blood test every six weeks initially but I do know some doctors think 8 weeks is o.k.

Make an appointment for your blood test before you see GP for his update on your dose. Some mistakenly think if the TSH is 'in range' (and that may be at the higher end) that you're on sufficient hormones - that's not the case. The aim is a TSH of around 1 or lower and believe for pregnancy around 2 (someone will correct if I'm wrong).

Also get your Vit D, Vit B12, iron, ferritin and folate tested at the same time as we are usually deficient and to be well we need everything towards optimum levels. If he's not tested for antibodies, also ask for these too. Antibodies present mean we have an Autoimmune Thyroid Disease as they attack the thyroid gland and we will be hypothyroid eventually.

Miscarriages can be common so we have to be sure we feel well, with an optimum of hormones.

web.archive.org/web/2010103...

bluebug profile image
bluebug

Make sure you get a print out of the test results and ranges from your doctor of ALL tests you have. It is your right under the Data Protection Act. If you are questioned by the receptionist just state it is for your own records. (You may have to pay a few pence and wait 2-3 days.) When you do get the results, come here and post the result plus range. Posters on here will tell you what is normal and what is not, and indicate if your doctor is treating you OK.

If your GP refuses to test folate, vitamin B12 and ferritin then use a private company like Blue Horizon link - thyroiduk.org.uk/tuk/testin...

If you aren't sure what test to get, come here and ask.

Be aware that doctors are very badly trained in nutritional problems. For example many labs have a ferritin range from 15-200 or even 7-200. Now if your level is at the lower boundary e.g 16 you will be feeling exhausted with hair loss, nail problems, skin problems, feeling cold etc but many GPs will not recommend that you should be taking iron tablets as you are within the range even though you have signs and symptoms of iron deficiency.

Kitten1978 profile image
Kitten1978

Hi Melanie,

I'm glad you have found this forum ;) The treatment of hypothyroidism in UK is appalling and doctors are much happier to put us on antidepressants/anti-anxiety medication than treat the actual cause of our distress. It makes me both angry and sad.

That's why it's important that we read, ask questions (this forum is a great source of knowledge and experience) and become experts in managing our own condition.

You are on a right track now ;)

Take care

melanieh515 profile image
melanieh515

Thank you to everyone that has replied.

Its nice knowing we are not alone and there is a wealth of support available from others going through the same thing.

I have a doctors appointment booked on 22nd June so will request a print out of all 3 of my blood tests with levels and ranges. I am also going to ask that I have a repeat test in 6-8 weeks rather than in 3 months like I was told yesterday.

Will also ask for antibodies to be tested as I don't think this was done.

I have been dealing with symptoms for so many years but they seem to have got a lot worse of late. Not something that can be ignored anymore and made even more important by trying to conceive. Why it should take me trying to get pregnant for them to take notice is beyond me though!

I am going to take the Levothyroxine in the morning with water well before food as people have suggested (even if I have to set a super early alarm and go back to sleep!).

Getting an early fasting blood test and taking the medication AFTER is something I wouldn't have thought of (and wasn't advised about) so thats great to know!

I also take a pre-conception vitamin, omega 3,6 & 9 complex, iron (I am often anemic), vitamin C, vitamin D (prescribed for deficiency) and vitamin B50 complex. I will start taking these before bed instead of the morning so they do not interfere with the absorption of Levo.

Thank you all, you have really helped in where to go from here now I have a diagnosis :)

SlowDragon profile image
SlowDragonAdministrator

If you do have high anti-bodies this means it is Hashimoto's caused by auto-immune issue.

Many Hashi patients find eating 100% gluten free diet can reduce symptoms. But it's a good idea, if you can, to persuade GP to run coeliacs (gluten) test first. But be aware that if you get negative result (ie it says you don't have gluten issue) that is not always true. (I found that out the hard way!)

You may still want to try going gluten free to see if it gives improvement.

Lastly some of us prefer taking Levo at bedtime. Some simply find it more convenient. Others (like myself) have found it seems to give better result. You still need to not eat before (2 hours) or after.

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

Not recommended to take any other medication or supplements at same time as Levo either. Especially iron or magnesium need to be four hours minimum away.

LT84 profile image
LT84

Hi Melanie515,

I was 27 when diagnosed with underactive thyroid and put on levo... only after a year of getting doctors to take blood tests every few months. One doctor was determined to get me on antidepressants but fortunately I was diagnosed with underactive thyroid before that could happen. It took six months of taking levothyroxine before I felt better, and another year before I got the weight shifted which had built up before diagnosis.

It's been five years now and I generally feel the levo keeps me balanced. I do find the doctors don't understand the condition and only want to give me a blood test for levels once a year! This seems not enough to me, so I go in whenever I feel really exhausted/feeling low... sometimes it has proved correct and they up the levothyroxine dose. I would advise you to go in to doctors for blood test whenever YOU feel like your levels are not balanced. Trust your body.

America seems much more educated about thyroid conditions. They have doctors who are at cutting-edge of thyroid treatment and research and seem to check for various levels , rather than just a few which UK doctors seem to.

Taking the tablet one hour before food is a revelation to me, as is the avoiding food and ensuring an early morning blood test appointment... so I'll be doing that in the future - thanks to Clutter and Shaws for those tips. I would love to hear any more...?? I read recently about a pig hormone which is supposed to be better at treating underactive thyroid than synthetic tablets... but I'm against all forms of animal cruelty and I can't imagine the pigs are getting a good deal out of providing hormones - any one else heard of this?

I find exercise, like walking and swimming, is really good for me to relax (which is important with thyroid condition) - maybe try one of those if you don't already.

I wish you all the best on your pregnancy plans.

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