Help with Results and Support Please - Thyroid UK

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Help with Results and Support Please

MillieMuffin profile image
11 Replies

Hi, I went to the Doctor because my periods were irregular and we started to try for a Baby. I had my bloods taken and these were the results in April 2016:

Coded entrySerum TSH level 5.98 miu/L [0.3 - 5]

Coded entrySerum free T4 level 15.8 pmol/L [12 - 22]

The GP said my TSH was borderline but not to worry and Then in March 2017 the GP suggested it should be tested again:

Coded entrySerum free T4 level 18.4 pmol/L [12 - 22]

Coded entrySerum TSH level 6.61 miu/L [0.3 - 5]

Thyroid autoantibody level 77 iu/mL [< 100]

At this point she saw it had cheeped up so the GP decided to put me on 50mg Levothyroxine to help bring my TSH down to see if it would help me conceive.

A few weeks later she retested and it was Serum TSH level 6.31 miu/L [0.3 - 5]

So had come down slightly but help on here suggested it was far to early for them to retest. and I had the diagnoses of Hypothyroidism.

Then in June 2017 it was Serum TSH level 3.37 miu/L [0.3 - 5]

At this point they only seemed to be testing TSH!

So because she had not tested anything else since March 2017 I requested them to check a few different things are these are my recent results from January 2018:

Serum free triiodothyronine level 6.5 pmol/L [3.1 - 6.8]

Coded entrySerum free T4 level 26.9 pmol/L [12 - 22]

Coded entrySerum TSH level 0.05 miu/L [0.3 - 5]

Thyroid autoantibody level 938 iu/mL [< 100]

So My TSH has gone down, Serum T4 has gone up and my autoantibody seems to have really gone up. I am pretty anxious about this and think it's mad that I went in with a borderline Thyroid looking to get it more normal to try for a baby and now everything seems to be majorly worse. I have also since been diagnosed with PCOS and not Metformin since October last year so anything effect results?

Sorry it's long winded thank you so much for reading!

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MillieMuffin
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Clutter profile image
Clutter

MillieMuffin,

Results are a lot better, not worse. TSH is suppressed and FT4 is over range indicating you are a little overmedicated on 50mcg. FT3 is good in the the upper range. I would reduce dose to 25mcg/50mcg alternate days to average 37.50mcg daily and retest levels after 6-8 weeks.

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, magnesium and oestrogen.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

The TSH of women planning conception should be in the low-normal range 0.4 - 2.5. When pregnancy is confirmed dose is usually increased by 25-50mcg to ensure good foetal development. NICE also recommends that hypothyroid women planning pregnancy should be referred to endocrinology. cks.nice.org.uk/hypothyroid...

Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee

13. The serum TSH reference range in pregnancy is 0·4–2·5 mU/l in the first trimester and 0·4–3·0 mU/l in the second and third trimesters or should be based on the trimester-specific reference range for the population if available. These reference ranges should be achieved where possible with appropriate doses of L-T4 preconception and most importantly in the first trimester (1/++0). L-T4/L-T3 combination therapy is not recommended in pregnancy (1/+00).

onlinelibrary.wiley.com/doi...

According the ATA First Trimester TSH levels between 2.5 and 5.0 are associated with increased pregnancy loss

thyroid.org/patient-thyroid...

MillieMuffin profile image
MillieMuffin in reply to Clutter

Thank you so much that Information has been super helpful and to be honest is much more than what my GP would give me. They seem to give me figures but with no further explanation. I will ask to be referred. This might sound stupid but was this always likely to happen, for example if I had not gone on the Levothyroxine or had been tested before, can it Just occure. I didn't know if anything could cause Hashmoto's I will be honest that sounds kind of scary. I will do some research and get back to my GP next week. I was Just such a big Jump from 77 to 938 in less than 12 months. I suffer with health Anxiety so as you can imagine anything sets me off with worry. Thank you again for taking the time to reply.

Clutter profile image
Clutter in reply to MillieMuffin

MillieMuffin,

It's Hashimoto's which causes hypothyroidism. You've probably had Hashimoto's for years without knowing. Certainly long before your TSH was abnormal. Antibodies fluctuate and will be high after an autoimmune attack on the thyroid gland and will then subside until the next attack.

silverfox7 profile image
silverfox7

90% of us have Hashimoto's so it's not unusual though doctors aren't to good with advice.

SlowDragon profile image
SlowDragonAdministrator

Your 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

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take 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.

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

Private tests are available

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

Bonnie51mom profile image
Bonnie51mom

Hi Millie my Dr.has increased my Tyroid meds then decreased it twice It has been a challenge for over a year and my Dr is still trying to figure out what is best for me There,are,a,lot of people on here that I follow and ask them questions

MillieMuffin profile image
MillieMuffin

Thank you for the Replies. I won't lie this whole thing has really got me down and made me feel it will now be impossible to get pregnant (already hard enough as it is with PCOS and over 4 years of trying) I stupidly read loads of horror stories online and wound myself up. She has checked vitamins and if nobody minds I will share them aswell incase anybody could make any sense of them, I am so fed up with this whole "Satisfactory, No further Action Required" Just because they look "OK" on a wide range scale classed as normal.

Total Vitamin D (serum) 50 nmol/L [> 50.0]

Below low reference limit (This also states BORDERLINE NO FURTHER ACTION REQUIRED)

Serum vitamin B12 level 349 ng/l [200.0 - 960.0]

Serum ferritin level 35 ng/ml [15.0 - 350.0]

Serum folate level 12.4 ng/ml [3.0 - 18.0]

These also state Satisfactory!

I also got these which they marked "Satisfactory"

Serum total cholesterol level 5.7 mmol/L

Serum HDL cholesterol level 1.1 mmol/L

Calculated LDL cholesterol level 3.8 mmol/L

Serum cholesterol/HDL ratio 5.2

Serum non high density lipoprotein cholesterol level 4.6 mmol/L

Serum triglyceride levels 1.87 mmol/L [< 1.5]

On my Thyroid one it says TPO - seen in Hashimoto's thyroiditis, Grave's disease, Addison's

disease and pernicious anaemia, but can be seen in normal

individuals.

Sorry for the long threads, Just so confused by it all. I am unable to see the Doctor until Tuesday next week. I dread it because a few months ago I mentioned an awful cough and swelling feeling in my throat usually an hour after taking my Thyroid medication and she simply said "Take it with Yogurt" (I only knew this was wrong because a Thyroid group said I should not be having it with dairy) and I took in some Multi Fertility Vitamins and asked for them to check if they were OK to take and they looked and said they would be fine.

Then when I got home I asked on a Thyroid group and was advised not to take them because they had lots of Iodine in them. Just so confused. I asked to be referred to an endocrinologist and they instead sent me to a fertility clinic, is that the same thing or have they got confused about what I was asking for? I Just feel so alone and confused, like you have to self educate because the Doctor's don't understand therefore don't really care.

I am also now terrified when I do get Pregnant because the Doctor is so slack she would not be checking my Blood regularly. I requested to have my Thyroid re checked in September, They then allowed me to do the Blood test in January! My Mum has Thyroid problems, I have always known I would probably have trouble which is why when I wanted to start a family I especially requested they checked it.

MillieMuffin profile image
MillieMuffin

Oh and I do always get full figures, after years of Just being told everything was OK, Satisfactory or Borderline I decided to register for their online service which shows the results exactly as they come back from the lab so I can now see things for myself.

Which is a blessing and a curse, because my Anxiety can go crazy when it see's things like this where as If I had not of seen them I would have had no idea until I went in to see them.

MillieMuffin profile image
MillieMuffin

Hey, Just been to see the Doctor to discuss results. She has told me to STOP taking my Levothyroxine and go back in a month or two and SEE WHAT HAPPENS!!!!!!!!

MillieMuffin profile image
MillieMuffin

Just wanted to update, I have been halfing the dose myself whilst waiting to Join a new Doctor Surgery. They rang today and have booked me an appointment! They mentioned they could see I was on Levothyroxine and asked when I last had blood tests and this checked... Which instantly made me feel more confident that this surgery might actually give a sh*t about my health and not ignore it for years like the previous doctor when I explained the situation and being told to stop taking my medication she genuinely sounded concerned and confused why I would of been told that. All round seems promising!

humanbean profile image
humanbean

Can I suggest you copy your latest results (the ones above starting with Vitamin D) into a new post and ask for feedback.

It is a problem on this forum that people tend to start ignoring posts once they have hung around for a while. It is rare for a post to stay active for very long. It isn't personal, it is just the way the forum has developed.

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