Confused: Hi can anyone help? I was diagnosed... - Thyroid UK

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Confused

Linzr
Linzr

Hi can anyone help? I was diagnosed with under active a while back. Started on 50mcg of levo, i never really fully understood anything about it as i was just given the medication and not really an explanation. And to be truthful i didnt always take it either. I have been taking it steady since sept this year but have had a huge amount of hair loss which im putting down to the medication. After reading some of your chats i phoned my gp this morning for my results on 10th dec they said they were normal and tsh was 1.79 does this sound about right?

Thanks

28 Replies
oldestnewest

That TSH is too high. Should be 1 or under. Did they only test the TSH? That is totally inadequate, you need the FT4 and the FT3, too.

Have you had your antibodies and nutrients tested?

TPO antibodies

vit D

vit B12

folate

ferritin

Linzr
Linzr in reply to greygoose

No they just did a full blood count and basic thyroid check. I know i shouldnt but i stopped taking levo again last week. Could the levo be causing my rapid hair loss? I feel totally lost with this thyroid problem. Im really not clued up in it at all and feel like my doctor will just put things down to anxiety if i start digging deeper

Thanks

greygoose
greygoose in reply to Linzr

It could be the levo, yes. But, if it is, it's only temporary. And continually stopping and starting the levo will not help, it will just keep setting you back and making the hair-loss period longer.

Try taking Evening Primrose Oil and Borage Oil to off-set the effects of the levo on your hair.

Linzr
Linzr in reply to greygoose

Im sorry as said im not very clued up with this condition. Do i restart the 50mcg and add in evening primrose oil?

greygoose
greygoose in reply to Linzr

Oh, yes. The levo is for life. You've got to take that if you're hypo. Start taking the EPO and Borage Oil as well. But do leave at least two hours between the levo and other supplements.

I would be very surprised if you weren't on too low a dose of levo. 50 mcg is just a starter dose, and should have been increased to 75 mcg six weeks after starting it. I don't really think your doctor knows much about thyroid, does he. Which would be why he never gave you any sort or an explanation of your condition. Try reading on here to learn about hypothyroidism:

thyroiduk.org/

And don't hesitate to ask if you have any questions. :)

Merry Christmas!

Linzr
Linzr in reply to greygoose

Thank you for your kindness. How do you come to learn about the t3 and t4? Never once has any gp mentioned this to me.

Merry christmas to you too

greygoose
greygoose in reply to Linzr

As I said, I don't suppose your doctor knows anything about all that. All he knows is TSH and levo, and has no understanding of how the thyroid works. They just don't learn about it in med school.

I had to learn about it for myself. When it became obvious that I was not going to get better under the tender care of my endo, and that she was incapable of answering my questions - and she was a professer in a big teaching hospital, too! - then I bought a book and started reading. I started with Mary Shomon's Living Well with Hypothyroidism. It's simple, basic, but a very good grounding in the thyroid. I never looked back. :)

SlowDragon
SlowDragonAdministrator

50mcg Levothyroxine is only a starter dose

When left on inadequate dose too long then vitamin levels can drop significantly

Low ferritin (iron) can cause hairloss

It's completely inadequate to only test TSH

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

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels and thyroid antibodies

Or test privately

You may need to get full Thyroid testing privately anyway as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

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

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

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

For thyroid including antibodies and vitamins

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

If you can get GP to test vitamin......then Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

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

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

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

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

Low vitamin levels cause TSH to drop even though you need dose increase in Levothyroxine

Linzr
Linzr in reply to SlowDragon

So if my tsh is 1.79 that is ok then?

SlowDragon
SlowDragonAdministrator

Important to find out exactly what has been tested by GP ....and equally important what hasn't been tested yet

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

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone 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.

Come back with new post once you get results

Members can advise on next steps

Linzr
Linzr in reply to SlowDragon

I phoned them this morning and all that was tested was general thyroid and fbc. They said my doc said thyroid is normal at 1.79?

Londinium
Londinium in reply to Linzr

Get the full paper printout of your lab tests with the lab reference ranges (which should be alongside each lab test). And then post that data on this forum if you want opinions.

Im sorry i really dont know very much about this condition. Ive always just went by what doctors have said which aint very much. Theyve always said its normal or fine. The result i got this morning was 1.79 and that was taking 50mcg. But due to rapid hair loss ive stopped again

We were all like you once upon a time ! We knew nothing or very little ! So we have to read and read to learn as much as we possibly can. Keep re-reading the Replies you have received and Follow links to learn more. Even make notes. The link below explains everything Thyroid and is connected to this Forum ...

thyroiduk.org

Linzr
Linzr in reply to Marz

Thanks for ur kindness. So is 1.79 considered normal? Do you know what causes the drastic hair fall?

Marz
Marz in reply to Linzr

As others have said it could be low Ferritin - you need the tests done that have been suggested before anyone can comment helpfully. We would only be guessing ..

Normal is an opinion - we are all different but as mentioned earlier a result around 1 may be better ...

Linzr
Linzr in reply to Marz

I will make an appointment for the new year and request more blood work. And restart the levo again in the meantime

Thankyou

SlowDragon
SlowDragonAdministrator in reply to Linzr

Getting full Thyroid and vitamin testing 6-8 weeks after being on constant unchanging dose of Levothyroxine

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

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

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Ask GP to test vitamin D, folate, ferritin and B12

Levothyroxine should always be taken on empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and more effective taken at bedtime

verywellhealth.com/best-tim...

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.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.

No other medication at same as Levothyroxine, leave at least 2 hour gap. Some like calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

Come back with new post once you get results

Linzr
Linzr in reply to SlowDragon

Oh i didnt realise i take 2 omeprazole at a time. Morning and evening. Usually take it with my levo

SlowDragon
SlowDragonAdministrator in reply to Linzr

Most hypothyroid patients have LOW stomach acid.

Omeprazole is to treat high stomach acid

Low vitamin levels are extremely likely with any PPI like omeprazole.

How long have you been taking this?

You can NOT just stop taking any PPI

Read up as much as possible

Thousands of posts on here about low stomach acid

healthunlocked.com/search/p...

Links about low stomach acid

articles.mercola.com/sites/...

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

healthygut.com/articles/3-t...

naturalendocrinesolutions.c...

Ppi causes low vitamin levels - especially B12 and magnesium

GP should test these

pulsetoday.co.uk/clinical/m...

gov.uk/drug-safety-update/p...

You have had a lot of good advice from the others. You need to read it and take it on board.

I’d be quite happy if my TSH was 1.79. I’d be even happier if it was down around or just below 1 but alas I’m just above 3 and as I’m within the lab ranges there’s no chance of being treated to get it lower.

Always get and keep copies of your blood test results along with their lab ranges.

I’d say you need to read as much as you can about your condition. You need to take an active interest in your treatment - not just sit back and ‘have it done to you.’ Make sure your doctors know you want to be an active partner in your treatment. Ask them questions and question what they say but I do think you will get better advice on here.

I imagine you are losing hair because your thyroid isn’t optimal. I lost lots of hair when I became hypo during treatment for Graves’ disease. I also think you need to take your meds as they have been prescribed before you decide you’re better off without them.

Stopping and starting like you have been doing isn’t going to help you much - well I’m not medically qualified but I doubt if it will! Plus it’s harder to complain to your doctors if you aren’t doing what they told you to do.

I stopped them due to the hair loss. Ive been taking omeprazole for years due to a stomach ulcer. So you think 1.79 is reasonable? Some one suggested its quiet high

SlowDragon
SlowDragonAdministrator in reply to Linzr

Ask GP to test B12, folate, ferritin and vitamin D

Magnesium needs testing too

My thyroid was very overactive (hyper) and I was given carbimazole an anti thyroid drug as part of what is known as ‘block and replace’ treatment to block the overproduction of thyroid hormone but I was taking it for too long without being given a blood test and so my thyroid became under active (hypo). My TSH zoomed up to nearly 7.

Becoming hypo was what was making my hair fall out. When the ‘replace’ part of my block and replace treatment started I was given levothyroxine- I started on 25 mcg and gradually worked up to 100mcg before my Graves’ disease went into remission.

When you are hypo (under-active thyroid) you need to take thyroxine (or something that will boost your thyroid.

That’s why I very much doubt it is the thyroxine that is causing your hair to fall out, from my own experience and what I’ve read in books and on here it’s more likely that you need more than the 50mxg thyroxine you are taking.

Not being hypo though I’m no expert but from what I’ve read on here 50 mcg is a starter dose for levothyroxine and you need to take it for 6 weeks before having your bloods checked again and seeing what is happening.

You also need to know what is happening with your B12, vitamin D, folates and ferritin because all of these need to be well up in their lab ranges to help your thyroid work well which will sort out your hair loss.

I’d say 1.79 is only reasonable if you feel well at that level. Myself, I’d prefer to be at 1.79 than where I am now but 1.79 might not be good for you - people are different.

HiddenThis reply has been deleted
Linzr
Linzr in reply to Hidden

That was my results after being on it for 12 weeks

Wetsuiter
Wetsuiter in reply to Linzr

depends how you feel. do you feel well?

Linzr
Linzr in reply to Wetsuiter

I feel ok in general, ive always been some1 who feels the cold easily, but i seem to have went the other way now and cant tolerate the heat. Apart from that im ok

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