Tsh rising not sure what to do unmedicated - Thyroid UK

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Tsh rising not sure what to do unmedicated

Lanny2010 profile image
25 Replies

Hello I wrote a couple of months ago about my symptoms and tests. I recently spoke to my Dr who said there is absolutely nothing wrong with my thyroid and this is backed up by "the best research in Western medicine". I just decided myself to do another test as recommended here (last medichecks test was in November). My results today are: TSH 4.58mu/L (range 0.27-4.2)

FT4 13.6pmol/L (range 12-22)

FT3 4.2pmol/L (range 3.1 - 6.8)

My results in November with Medichecks were (range then result):

TSH

(0.27 - 4.2 R)

3.06

mIU/L

FREE T3

(3.1 - 6.8 R)

4.1

pmol/L

FREE THYROXINE

(12 - 22 R)

14.2

pmol/L

THYROGLOBULIN ANTIBODIES

(0 - 115 R)

312.8

kIU/L

THYROID PEROXIDASE ANTIBODIES

(0 - 34 R)

106.1

kIU/L

I have symptoms, family history, coeliac disease, benign very visible nodules! Do I need to wait until I'm over TSH 10 to go back to the Dr or would folk recommend me sending these results in and asking for medication? I am working on vitamin levels etc. I can't really afford to go down the private route and pay for prescriptions. Just not sure if it's better to keep trying to treat myself with diet etc and hanging on for a while or do I actually need treatment and... will I get it? Thanks so much, confused! X

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Lanny2010
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Lanny2010 profile image
Lanny2010

Just to add the test results received today are with Monitor My Health and we're done yesterday at 8.30am. Should I send them in to the Dr? I feel she thinks I'm crazy!

SlowDragon profile image
SlowDragonAdministrator

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

Send both these results to GP

Request GP test vitamin D, folate, ferritin and B12

Very likely to have low vitamin levels as DIRECT RESULT of autoimmune thyroid disease

Low vitamin levels tend to lower TSH…..essential all four vitamins are improved to OPTIMAL levels

And coeliac blood test too ….as per NICE guidelines

nice.org.uk/guidance/ng20/c...

With high thyroid antibodies and symptoms and two tests with TSH over 5 you should be prescribed levothyroxine

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

Lanny2010 profile image
Lanny2010 in reply to SlowDragon

Thank you so much, this is very helpful, I couldn't find the nice guidelines and now I get it. Do most people then just wait until they have TSH 5-10? Maybe I'm being overly dramatic! I keep reading about optimal levels and hearing about people being treated with much lower levels and fewer symptoms which adds to my confusion! As the Dr didn't take my symptoms seriously, I feel I should just wait until I am over 5 before I go back to see her! Many thanks

Regenallotment profile image
Regenallotment in reply to Lanny2010

I had a 4.8 and a 5.5 TSH (same range as yours) with TPO antibodies at around 250. My GP accepts my private blood test results. You absolutely don’t need to wait till around TSH 10. We are all different but I was a barely functioning wreck of a shell of a human by the time I was diagnosed. Without this forum I’d still be on 25mcg, welcome to the Hashi club friend! Now it’s time to own your health, you will have to be pestery and pushy to get your meds and vits optimised but you can do it 🌱🦋🌱

Lanny2010 profile image
Lanny2010 in reply to Regenallotment

Hi thanks for this, I thought I would wait until it's 5? Maybe I should ask to speak to a different Dr now and be pushy then? Ask for a 9am NHS test? (My antibody test was private, they only tested my tsh when I visited Dr with thyroid nodule in August so would be good to get that properly logged with NHS too even though they said they would only test for antibodies if over 5). I haven't felt myself for 3 years all a bit intertwined with perimenopause (also not taken seriously) will have another go! Thanks so much x

Regenallotment profile image
Regenallotment in reply to Lanny2010

Definitely be pushy, I saw a string of locums after diagnosis and actually that helped.

Interesting you say about peri menopause, I was put on HRT at 45 only to discover at 48 I was having 2 periods a month and really struggling. Turns out I was hypothyroid all along (symptoms are very similar) and at 49 my ovaries are still in full swing, according to latest ultrasound. I hope you get it all sorted. 🌱

Lanny2010 profile image
Lanny2010 in reply to Regenallotment

Thanks I'm going to try! Oh that is interesting about perimenopause I'm 45 and definitely some overlapping symptoms but sounds like it could be hypothyroid... Thanks again this has been so helpful x

SlowDragon profile image
SlowDragonAdministrator in reply to Lanny2010

See what vitamin levels are like as next step

When my TSH was 7 ……vitamin D was 12nmol

Below 25nmol is deficient

Under 50nmol is insufficient

Over 75nmol is reasonable

Extremely common to find ferritin (and iron) are terrible. Being anaemic will make you totally exhausted

Similarly low B12 and folate make you feel terrible

Lanny2010 profile image
Lanny2010 in reply to SlowDragon

Hi thanks I've been supplementing since full thyroid medichecks test results in November but haven't tested since. Did you say the best source of iron is in food or do you ever supplement? Thank you so much 🙏x

SlowDragon profile image
SlowDragonAdministrator in reply to Lanny2010

What were vitamin results in November

Never supplement iron unless full iron panel shows it’s necessary. You can have low ferritin and high iron

Medichecks iron panel test 

medichecks.com/products/iro...

Lanny2010 profile image
Lanny2010 in reply to SlowDragon

Thanks so much. In November my vitamins were:VITAMIN B12 - ACTIVE

(37.5 - 188 R)

117pmol/L

VITAMIN D

(50 - 250 R)

99nmol/L

FERRITIN

(30 - 150 R)

61ug/L

FOLATE - SERUM

(8.83 - 60.8 R)

26.2nmol/L

Ah I thought ferritin was iron, so do you recommend a separate iron test?

Since November I've been taking

Igennus super B complex twice a day

Invite vitamin D3 4000iu spray

also magnesium glycinate, selenium and zinc. Been trying to eat iron rich foods too.

Thanks so much really appreciate this help 😊

SlowDragon profile image
SlowDragonAdministrator in reply to Lanny2010

These look pretty good

Aiming for ferritin at least over 70 and nearer 100 likely better

See what vitamin levels are like at next test

Probably don’t need to do full iron panel with ferritin over 50

Here’s Medichecks iron panel test

medichecks.com/products/iro...

Lanny2010 profile image
Lanny2010 in reply to SlowDragon

Thank you very much will check in another test soon and keep eating black pudding! 🙏😊

Lanny2010 profile image
Lanny2010 in reply to SlowDragon

Hi SlowDragon hope you don't mind another quick question. So now I have been prescribed 25mg levothyroxine (Wockhardt) with a review in 7 weeks. Just checking is it just 30 minutes before food/drink that I take it? Also am I supposed to leave it a certain time before taking supplements? I'm sure I've read this on here but can't remember the timings. Thanks so so much again x

SlowDragon profile image
SlowDragonAdministrator in reply to Lanny2010

Take either early morning or at bedtime

On empty stomach and then nothing apart from water for at least an hour

No supplements or medications within 2 hours

Some like iron, magnesium, calcium or vitamin D tablets at least 4 hours away from levothyroxine

Wockhart are very well tolerated. They only make 25mcg tablets. So when dose is increased will need to increase number of tablets (or try different brand)

Lanny2010 profile image
Lanny2010 in reply to SlowDragon

Thank you very much, that's perfect. You have been so helpful and I really appreciate it 🙏

tattybogle profile image
tattybogle

Hi Lanny ,,,Assuming you are in UK? and it's NHS treatment we are talking about :

the good news is .. you don't have to wait until TSH is over 10

the bad new is you do have to show it's over the lab range on an NHS blood test ~ they can't officially accept your private results~ and then they have to wait another 3 months to confirm it's still over , and hasn't gone back down ... and then it depends on the GP .... they don't 'have to' treat it at that point ..they can 'consider' it.

Your over range TPOab thyroid peroxidase antibodies , show you have Autoimmune Hypothyroidism .. which is likely to get steadily worse,.. so the TPOab result ,AND any symptoms of hypothyroidism mean they are more likely to consider treating it before '10'

NHS (N.I.C.E )thyroid treatment guidelines below:

nice.org.uk/guidance/ng145/...

(* note 'subclinical hypothyroidism' means 'TSH over lab range, while fT4 is still in range' )

"1.5 Managing and monitoring subclinical hypothyroidism

Tests for people with confirmed subclinical hypothyroidism

Adults

1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.

Treating subclinical hypothyroidism

1.5.2When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.

Adults

1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.

1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:

a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and

symptoms of hypothyroidism.

If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."

NOTE ... TSH falls naturally over the day until it's lowest around 1-3pm ish., so do NOT have your NHS blood tests after 9/ 9.30 am ish .. you TSH will be lower than it is on these 8 am tests .. and once they have a record of an 'in range' TSH they are not allowed to retest it for 3 months .

NHS won't accept you need a 9 am appointment for thyroid ,,, i am usually erm ... "unable to attend later than 9.30 due to work "

Lanny2010 profile image
Lanny2010 in reply to tattybogle

Thank you so much that's really helpful. Yes in the UK, Scotland and yes NHS. I guess I'll just wait a while and go back and ask to be tested. The Dr didn't take my symptoms or raised antibodies seriously so I'll just have to wait until they get worse! Bit depressing but I can't afford private prescriptions at the moment. Many thanks x

tattybogle profile image
tattybogle in reply to Lanny2010

it's no bad thing that you have to get your initial diagnosis through NHS even if it means waiting 6 months ... they will always be highly dubious about a hypo diagnosis if Levo was already started on private prescription and this can create problems further down the line when they will keep suggesting you come of Levo every time you see them for anything... for the rest of your life .

see added Note on reply above re time of blood test . this will mean 'waiting' too ,, for an early a.m. slot for the blood test . but it's important

Lanny2010 profile image
Lanny2010 in reply to tattybogle

Thank you incredibly helpful and completely I agree 😊👍😊

Regenallotment profile image
Regenallotment in reply to Lanny2010

my gp accepts private test results as our labs won’t do more than TSH and she conceded I was doing the right thing for my health. She likes the official pdf though. Only takes my word for it when it’s Monitor my health (which is an nhs lab) 👍

Lanny2010 profile image
Lanny2010 in reply to Regenallotment

Ah that's interesting thanks, this latest test was Monitor my health so will send it in. Thank ls this has been very helpful indeed! X

DippyDame profile image
DippyDame

. I recently spoke to my Dr who said there is absolutely nothing wrong with my thyroid and this is backed up by "the best research in Western medicine".

Well that's confidence for you! But it's somewhat misplaced!

It sounds as if she is diagnosing you on the basis that your labs are in range ...which they often wrongly refer to as "normal".

Instead what you are aiming for is the point within the range where you are relieved of your symptoms by correct medication.

You have symptoms so your labs are not sitting on the correct point!

As the others have said, you have Hashi's...apart from having the correct medication you should try a gluten free diet.....it helps many Hashi patients.

When diagnosing, medics are supposed to consider symptoms as well as labs....but they often do not and the patient suffers until the TSH reading is 5...or higher..

Your are NOT crazy, just in need of correct treatment.

Yes, take your latest MMH results to this GP and point out the test was done in an NHS lab....she can't argue with that!

I quote...

Monitor My Health private thyroid tests in the UK are carried out at the Royal Devon and Exeter NHS Foundation Trust laboratory.

MMH results today are:

TSH 4.58mu/L (range 0.27-4.2)

This is over range so hypothyroid

FT4 13.6pmol/L (range 12-22)

Result is 16% through the ref range

FT3 4.2pmol/L (range 3.1 - 6.8)

Result is 29.73% ditto

Both Frees should be approaching 75% through their respective ref ranges.....but with the caveat that we are all different so %age will vary a bit....but not as low as yours is!

Most people would feel under par with those results

Your GP will probably argue TSH is ( almost) fine so you must be fine....not so.

TSH is not a totally reliable marker....it can fluctuate especially if you have Hashi's

Use this link to help make your case for medication

thyroidpatients.ca/2021/07/...

FT3 followed by FT4 are the reliable markers and yours are both miserably low

You need to be prescribed 50mcg levothyroxine which you take daily away from food and drinks and after 6 weeks on that steady dose you need to be tested again

You will most likely need an increase to 75mcg.....repeat, wait and test

Those results will point the way forward....post them on this forum for advice

When you see this GP ( asap!) write down all you wish to ask and say in support of medication, use the info provided in replies here. I used to do this, it focussed my thoughts and stopped me sqawking like a demented parrot if I felt nervous!!

And yes, also work to optimise vit D, vit B12, folate and ferritin and cut out gluten... but absolutely no need to sit back and suffer until TSH rises

You should not be left to feel under the weather!

Just a few thoughts....good luck.

Lanny2010 profile image
Lanny2010 in reply to DippyDame

Hey thanks so much, that's incredibly helpful and generous of you. I'm going to take your advice and be very clear as per your words thanks I really needed that (I always lose my confidence with the Dr but will write it down). I am coeliac (diagnosed 3 years ago bizarrely with silent symptoms) and I suspect the two are connected (so completely carefully gluten free). Thank you 🙏😊x

DippyDame profile image
DippyDame in reply to Lanny2010

You can do this!

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