Starting on meds / doctor not very helpful - Thyroid UK

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Starting on meds / doctor not very helpful

Kiwiq2019
Kiwiq2019

Hi all so this week my doctors discovered I'm hypothyroid. Because the results was abnormal I got peroxidase antibodies checked and a repeat tft

Based on the results the doctor has started me on 25 mcg of levothyroxine for 8 weeks and said I will probably be fine after that.... i thought it was a life long thing?

Edited to add my tsh on Monday was 24.6 and Yesterday was 16.8

My peroxidase antibodies level is 271 kiu/l and should be <34

21 Replies
oldestnewest

You need another doctor. It is for life in the vast majority of cases - did he give you any indication why he thought you would be 'fine' after two months on an inadequate dose? The normal starter dose is 50 mcg, with 25 mcg increases every six weeks. Starting on too low a dose can make you worse, rather than better. This doctors knows very little about thyroid, I'm afraid.

Did you get a copy of your results? If you live in the UK, it is your legal right to have a print-out after every blood test - but you have to ask for them, doctors don't just hand them out. Most doctors would prefer you don't know! So, first step is to get them, if you don't already have them, and post them on here, with the ranges, and let us have a look. :)

SlowDragon
SlowDragonAdministrator

Unless you are over 50 years old, standard starter dose is 50mcgs

Bloods should be retested 6-8 weeks later

High thyroid antibodies confirms cause of your hypothyroidism is due to autoimmune thyroid disease also called Hashimoto's.

Low vitamin levels are extremely common with Hashimoto's

See different GP and get dose increase in Levothyroxine to 50mcg and request vitamins are tested too

NICE guidelines

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

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn't been tested yet

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Kiwiq2019
Kiwiq2019 in reply to SlowDragon

I have my results i did post them above

.I'll make an appt one day next week and take it from there. He did say he doesn't really know much about it

SlowDragon
SlowDragonAdministrator in reply to Kiwiq2019

Just testing TSH and FT4 and thyroid antibodies has diagnosed you have autoimmune thyroid disease

It's now important to test vitamin D, folate, ferritin and B12

These are frequently too low as direct result of being hypothyroid. You may need to be prescribed supplements to improve levels

Kiwiq2019
Kiwiq2019 in reply to SlowDragon

Everything else was within normal range. I had b12 and folate, iron and ferittin all normal range and we are still waiting for the vit d. Hes asked me to start on 25 and then repeat the bloods in 8 weeks and then said after 8 weeks I can probably come off the meds ? I will make an appt for a second opinion but he also said I don't need to put ttc on hold?

SlowDragon
SlowDragonAdministrator in reply to Kiwiq2019

Run away from this GP as fast as possible

A TSH of 16 is clearly hypothyroid

You will definitely need to delay TTC until TSH is under control

TSH should be under 2.5 before considering TTC

Miscarriage is high risk, but more important a baby is entirely dependent on your thyroid hormones for first three months of their development.

Can you add the actual results and ranges on vitamins

Within range results are frequently not good enough

Obviously if thinking of TTC in near future it's very important to have good folate and B12 for a baby's neurological development

Have you been taking any preconception vitamins?

TTC link

verywellhealth.com/infertil...

Links to Pregnancy guidelines

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

gp-update.co.uk/files/docs/...

See pages 7&8

btf-thyroid.org/images/docu...

See clear advice on increase in Levothyroxine as soon as pregnancy is confirmed

Kiwiq2019
Kiwiq2019 in reply to SlowDragon

Hi so i have all the levels

b12 is 544 ng/l (200-770)

folate is 20 ug/l (3.9 -26.8)

Ferritin 67 (13-150)

iron 17.3 (13-32)

ive been taking multi vits for anbout a year now as iron and vit d was slightly low last year

luckily my gp practice has more than one doctor and most ive seen have been great - i know who to avoid etc

Ive been ttc since February - 6 months today in fact its my 6 month anniversary since getting married lol

but prior to this i was not trying but not preventing either

ive been convinced ive had fertility issues for a while tho

My periods tho are opposite of what most things say - i am very light and only last about 2/3 days which i thought was the opposite of hypothyroid

SlowDragon
SlowDragonAdministrator in reply to Kiwiq2019

So at least your vitamins are pretty good

But with Hashimoto's confirmed and now you are started on Levothyroxine you may want to choose supplements that don't contain iodine as excess iodine may make Hashimoto's worse

But there are varying views on iodine

thyroidpharmacist.com/artic...

bmj.com/content/352/bmj.i94...

chriskresser.com/iodine-for...,

Levothyroxine contains iodine so you will be getting some

SlowDragon
SlowDragonAdministrator in reply to Kiwiq2019

With hypothyroidism....there are hundreds of symptoms.....fortunately we don't all get all of them!

List of hypothyroid symptoms

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

Kiwiq2019
Kiwiq2019 in reply to SlowDragon

ahhh ok fair enough, ill have a check of my meds when i get home, never seen iodine in them but then, never really looked for it

so ill start the 25mcg tomorrow - if my results stabilise in the next 8 weeks when i get the repeat bloods ill be safe to ttc again then wont i?

SlowDragon
SlowDragonAdministrator in reply to Kiwiq2019

Depends how much Levothyroxine you need. Most people eventually need somewhere around 100nmol as minimum.

It's ridiculous to start you on 25mcg. It's too small a dose, and will take another 6-8 weeks longer to increase to safe levels

nhs.uk/medicines/levothyrox...

Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.

Kiwiq2019
Kiwiq2019 in reply to SlowDragon

im wondering whether to just take 2 of the 25mcg from tomorrow then and arrange an appt next week to change it officially if i show the BNF guidelines...

greygoose
greygoose in reply to Kiwiq2019

Ferritin /iron are pretty low. And multi-vits really aren't recommended for all sorts of reasons.

Kiwiq2019
Kiwiq2019 in reply to greygoose

Oh are they? I doubt I'll get a script for them. How can I increase them if multi vits arent good? And can I ask why?

greygoose
greygoose in reply to Kiwiq2019

You shouldn't be taking a multivitamin anyway for all sorts of reasons.

* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.

* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.

* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.

* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc.

* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.

* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.

With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results. :)

It appears, actually, that the best way to raise your iron/ferritin levels is to eat liver, liver pate, or black pudding once a week. Doubtful your doctor would prescribe anything helpful, even if he did prescribe - which they rarely do because they know nothing about nutrients.

Kiwiq2019
Kiwiq2019 in reply to greygoose

Ahhh wow. Me and my husband are both taking these preconception trying to conceive vitamins thinking we was benefiting ourselves. My husband has thalassemia trait so his irons always low but they haven't prescribed him anything so we thought the multi vit was the best option...

Re the liver husband likes it but the thought of it turns my stomach lol is there anything else? Is there another way I can increase my iron? I find tablets are just the easy option lol. Could I get just otc iron and take it with vit c?

greygoose
greygoose in reply to Kiwiq2019

I guess you could, but I'm not an expert in the subject, so I can't advise you on which to take, or anything. :)

ILR2019
ILR2019 in reply to greygoose

I take no notice of the nutritional advice my GP tells me. The last one told me to eat any foods fortified with B12. I informed him I eat a largely whole foods diet (ie; food stuff in it's natural state, very little processed). He told me to scrap my faddy diet and eat cereal and processed food containing vits. So he essentially wanted me to eat whole foods that had been processed until devoid of nutrients then fortified with the nutrients that processing had removed 🤦‍♀️

greygoose
greygoose in reply to ILR2019

Incredible, isn't it. But, unfortunately, true. One doctor told me to live on boiled rice and carrots. Another just soup - but with not a trace of fat in it! Oh, we had such a row! I told her she knew nothing about nutrition or cooking! lol Others have told me soy is good for me, butter is evil, and all sorts of nonsense. They have no idea.

ILR2019
ILR2019 in reply to greygoose

It's worrying really because you can make yourself bloody ill following that sort of advice.

greygoose
greygoose in reply to ILR2019

Which is why I always advise people not to take nutritional advice from doctors. They are dangerous.

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