Just been diagnosed with hypo- results update a... - Thyroid UK

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Just been diagnosed with hypo- results update already?

Laura2207 profile image
41 Replies

Hi, I have just been diagnosed with hypothyroidism, I have been put on a starting dose of 50mcg of levothyroxine, my gp said my results was 47 so was way out of normal range,not sure what he meant as I'm completely new to all this, I have another appointment booked on the 11/3/21 for more bloodworm etc but I have been booked in on the 9th 2 days before for my covid vaccination, I was wondering should I wait till my levels for my hypo are back to a relatively normal stage? I have only been taking levo for around 3 and half weeks and still have alpt of the symptoms I originally rang my gp for, headaches, dizziness, cold feeling, seems to get worse after eating also and just a general feeling of unwell and something not right, any advice would be greatly appreciated as I'm greatly anxious about the whole thing...the new diagnosis aswel as the vaccination, kind regards, laura

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Laura2207 profile image
Laura2207

Bloodwork, not bloodworm!

jimh111 profile image
jimh111

The value of 47 will be your TSH level which is usually around 0.5 to 5.0. This may seem very high but TSH does jump very high when your thyroid levels are low. You could ask your doctor if you can increase your dose as you are still not feeling well. It's traditional to start non-elderly people on 50 mcg but they can be started on 100 mcg so an increase is possible.

I would go ahead with your COVID vaccination, being a little hypothyroid will not be an issue and COVID is a bigger risk.

Laura2207 profile image
Laura2207 in reply to jimh111

Thank you so much for your quick reply, I have been reading alot on this sight and trying to learn alot as my gp never explained anything to me, its a little confusing with the tsh/t3/t4 etc but once I'm settled for the night I will have a good read, is there tests my gp can do to find out what caused the hypo?

I was a little concerned about the vaccination just because of how I felt and was worried that it might of made it worse because I didn't know what had caused the hypo but I think knowing so little about it just made my anxiety worse and then the symptoms was making my anxiety go through the roof but the more I read the more I feel relieved

fuchsia-pink profile image
fuchsia-pink in reply to Laura2207

Make sure you have early morning fasting blood tests (when TSH is highest) going forwards with 24 hours from your previosu dose of levo (take the next dose straight afterwards). You are currently on a "starter" dose and are likely to need a dose increase to 75 mcg a day after your next test, as your TSH is so far out of range - and potentially several dose increases until you are at the right level of medication for you,

See if the GP will test for thyroid antibodies. If these are over-range it will show that the reason you are hypo is Hashimoto's, the biggest single cause. If they aren't over-range, it doesn't necessarily mean you DON'T have Hashi's as with Hashi's your antibodies jump about all over the place and might just be low at the time of the test. If it IS Hashi's you don;t need to test antibodies again: they will jump about as they see fit and you can't "cure" it. But lots of Hashi's people find it helpful to go gluten-free even if not coeliac.

If the GP is helpful you might try and get more testing - like your actual thyroid hormones - so free T4 and free T3 - and key nutrients - ferritin, folate, vit D and B12 - as these are often too low when you are hypo and need supplementing. I have had some success with my GP by saying that these are the tests recommended by Thyroid UK.

I don't want to bombard you with info when you're new to it all - but will say that you may find helvella 's excellent glossary to all things thyroid helpful - it's saved in a "pinned post"

Good luck x

Laura2207 profile image
Laura2207 in reply to fuchsia-pink

Hi, thanks for all the advice, the only appointment they could get me in was at 2:15pm otherwise I would of had to wait another 2 weeks, my gp surgery has just started doing the vaccinations so I think most of the morning slots are saved for the vaccinations, as I tried to get morning, I didnt know about not taking levo 24hrs before blood work either so thank you for that, I will take a look amd read through helvellas glossary also, the more I read the more I'm hoping to understand, my gp did so many tests like the results with the thyroid test im unfamiliar with reading results etc,I will add my results to this post that my gp did, i dont think he requested all as it was just as much of a shock to him as it was for me that my thyroid levels came bk as they did, as he thought i might of been having panic/anxiety attacks bought on by the trauma around the events that happened from the sudden loss of my step dad at home from covid 2 weeks previous, so he assumed the event had bought it on but was actually hypo, can I request the tests to ne done from my gp if he does not mention them?

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jimh111 profile image
jimh111 in reply to Laura2207

It can be very confusing reading all the information here because most of us have complex conditions whereas the majority of patients have 'primary hypothyroidism' which means their thyroid gland has failed. This is usually due to autoimmune hypothyroidism (often called 'Hashimoto's'). It doesn't really matter why your thyroid is failing, it is most probably due to autoimmune attack. Whatever the cause you will need to replace the hormone your thyroid used to make. This is usually done with levothyroxine which is chosen because it gives stable hormone levels and is cheap. This works for most patients (perhaps not ideal) but not for all.

You will need some dose increases before you are on an appropriate dose. Some patients recommend having the blood taken early morning because it gives a higher TSH and they feel they are undermedicated, doctors tend to prescibe a little too low a dose. As regards your next test I wouldn't worry about it being in the afternoon as your TSH will almost certainly still be a bit high and so you won't need to make it look high.

You should not have the blood taken within four or five hours of taking your levothyroxine because it can give slightly false results just after taking the tablet, the hormone hasn't had time to bind to circulating proteins and so gives a slightly high fT4 result. You could take the tablet the night before so that you aren't depriving yourself during the day.

Laura2207 profile image
Laura2207 in reply to jimh111

Yes it is all very confusing! Slightly overwhelming also, oh so aslong as I take medication till I get to roughly the right levels I dont need to find an underlying cause etc? Will my symptoms remain the same or could possibly get worse until I'm on the right dose? One of my symptoms is if I ate I felt awful, since taking levo all my symptoms are still there they have just eased slightly but after eating I do feel worse, slightly light headed and often heart palpitations, could this be down to hypo or mess and has anyone experienced similar symptoms or is everyone different? Sorry for all the questions!

I take my levo between 6 and 7am as that is roughly around the time I wake in the morning, I have started leaving an hour before I eat or drink so I should be ok if my blood work is in the afternoon as that would be around 8 hr after taking levo?

jimh111 profile image
jimh111 in reply to Laura2207

Leaving an hour is a safety net because coffee and bran in particular inhibit absorption of levothyroxine. As you are starting out you could leave less time if it's more convenient and if your absorption is slightly reduced you will end up on a slightly higher dose to compensate. If you were to find you got absorption problems you could reintroduce an hour's gap or simply switch to taking it at bedtime.

As your symptoms are only a little bit better you could let your doctor know and ask if you could have an increase now, especially as you are due for your COVID jab soon. It takes about six weeks for a dose change to settle down, after three and a half weeks you will have accumulated roughly 90% of your dose (due to long half-life of levothyroxine). I don't know about heart palpitations. You could try taking a magnesium supplement such as magnesium citrate as we tend to be low in magnesium when hypo - note that magnesium blood tests are no use, they don't measure intracellular magnesium.

Laura2207 profile image
Laura2207 in reply to jimh111

An hours gap works pretty well for me, by the time I get round to making a drink or any food it's been an hour or more so all good on that front. I will try to get a phone appointment with my gp today and see what I can do, if it helps more of my symptoms its definitely worth a try, I haven't taken any magnesium as I stopped taking multivitamins about a month ago and then once I seen how high my b12 was I just didn't restart them as didnt want to make that any worse either

SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Which brand of levothyroxine have you started on

Many people find different brands of levothyroxine are not interchangeable

You need thyroid antibodies tested to see if cause of hypothyroidism is due to autoimmune thyroid disease also called Hashimoto’s. Vast majority of primary hypothyroidism is autoimmune

Contact GP and ask for next 25mcg dose increase in levothyroxine

You were extremely hypothyroid. 50mcg is only a starter dose

Ask GP to test vitamin D and retest folate as first folate test failed

High B12 result. Do you take B12 supplements, or multivitamins or B12 injection?

Laura2207 profile image
Laura2207 in reply to SlowDragon

Thank you, im glad I found this forum knowing there's so many that are in the same or similar situation, so thank you for having me!

My brand just says levothyroxine sodium not sure if that means the brand.

I'm going to ring my gp surgery today and try and get a phone consultation for today, its a bit hectic there at the minute and trying to get any kind of appointment is really hard at the minute but I will keep trying and be a bit more persistent. I will also ask for other tests and find out what his next steps are with testing for vitamin etc.

Could the test results be high through dehydration? When I had the blood test, I had only been up an hour as it was done at 7 am, I had not had anything to drink, nor had I drank enough the previous couple of days as feeling like I did I ate one meal a day in those couple of days and didn't eat alot of that along with only sips of water because I was so nauseous.

I was taking multivitamins about month ago, centrum for women vitamins, I stopped taking them leading up to blood test and not started them again as I seen the results was high, ive also noticed I have dropped 6-7lb roughly in the last 3-4 weeks is that normal?

SlowDragon profile image
SlowDragonAdministrator in reply to Laura2207

There should be brand name on box of levothyroxine

Eg Teva, Mercury Pharma, Almus, Accord, Northstar

Teva brand upsets many people.

Important to drink plenty of water in day before blood test

Multivitamins explains the high B12

Laura2207 profile image
Laura2207 in reply to SlowDragon

Oh yes, it's on the side of the box it is Mercury pharma group Ltd.

I have definitely upped my intake of water over the past 2 weeks, I have swapped to just having 1 coffee an hour after taking medication and drinking water throughout the rest of the day as I will admit I was one of those that never really drank water was just coffee and fizzy drinks,

Is there any other vitamins that can be taken? As I did read some multivitamins dont work well with levothyroxine.

SlowDragon profile image
SlowDragonAdministrator in reply to Laura2207

You want to test vitamin D, folate, ferritin

You have had Full blood count ....but couldn’t see ferritin result

GP did folate test, but it failed so needs retesting

Vitamin D is important to test as frequently low with hypothyroidism

50mcg levothyroxine is only a starter dose

Getting dose levothyroxine increased to 75mcg daily ASAP and bloods retested 6-8 weeks after increase

Will need further increase over coming months

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

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

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

SlowDragon profile image
SlowDragonAdministrator in reply to Laura2207

Never ever take anything at same time as levothyroxine

Only take on empty stomach and then nothing apart from water for at least an hour after

No supplements or medications for at least 2 hours after

GP’s learn nothing about importance of vitamins and especially nothing in relation to why vitamin levels drop when hypothyroid and why good vitamin levels are essential

SlowDragon profile image
SlowDragonAdministrator in reply to Laura2207

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.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an 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 perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

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

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Many people find Levothyroxine brands are not interchangeable.

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Are you currently taking Teva?

Teva, Aristo and Glenmark are the only lactose free tablets

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/medications-f...

Teva poll

healthunlocked.com/thyroidu...

Laura2207 profile image
Laura2207 in reply to SlowDragon

I have just checked the box of my new prescription that I picked up yesterday from the chemist after reading that and that one has changed, the brand on that one is teva,

SlowDragon profile image
SlowDragonAdministrator in reply to Laura2207

Well it might suit you....or it might not

If it doesn’t suit.......get new prescription and request note added to all future prescriptions “No Teva”

Laura2207 profile image
Laura2207 in reply to SlowDragon

So main things I need to do to start with is ask for my dose to be moved up, Request to be tested for the above mentioned and not to keep swapping and changing the brand of levo, unless I don't get on with one of the brands.

I take a vitamin D supplement, I take my levo between 6 and 7am and take vitamin D between 11am and 12pm, vitamin D is 1000iu but I have only been taking those for the last 3 days as I knew they was ok to take but didn't know about multi vitamins so was waiting to speak to gp

SlowDragon profile image
SlowDragonAdministrator in reply to Laura2207

GP usually extremely reluctant to test vitamin D (relatively expensive test)

Thousands on here use the Vitamin D NHS postal kit £29

vitamindtest.org.uk

Aiming for vitamin D at least around 80nmol and around 100nmol maybe better

Private thyroid tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Laura2207 profile image
Laura2207 in reply to SlowDragon

I would be better off getting a test myself then if gp don't do all, are the results relatively quick? I have been on the phone to my gp surgery this morning trying to get through, when I finally did, they said they only had emergency appointments available and mine is not classed as emergency so will try again tomorrow, hopefully there's better luck

SlowDragon profile image
SlowDragonAdministrator in reply to Laura2207

Thousands of members test thyroid and vitamin levels privately

NHS will only test vitamin D at best once every 2 years

When supplementing vitamin D we should test vitamin D twice year

Test folate, ferritin and B12 annually

Thyroid testing

Test TPO and TG thyroid antibodies once

Test TSH, Ft4 and Ft3 6-8 weeks after each dose change or brand change in levothyroxine

NHS rarely tests more than TSH

Laura2207 profile image
Laura2207 in reply to SlowDragon

Thabk you so much for all the info, as soon as I have spoken to my gp once I can get ahold of him I will find out what he is willing to test and will test etc and then go from there and get my own done privately as I can always take them with me when I go also

SlowDragon profile image
SlowDragonAdministrator in reply to Laura2207

If feeling worse since starting Teva levothyroxine

Suggest you speak to GP on Monday and request 25mcg dose increase in levothyroxine

Make sure you get 25mcg Mercury Pharma tablets from pharmacy

Also explain to GP that Teva brand doesn’t suit you get new prescription for 50mcg

Request note added to all future prescriptions “no Teva “

Go back to Mercury Pharma 50mcg

Always ask for Mercury Pharma only and always double check the bag before leaving the counter

Looking at results above GP did try to test folate and ferritin in results above , but both tests failed. Ask that they are redone along with vitamin D

Laura2207 profile image
Laura2207 in reply to SlowDragon

I'm only on my 2nd day of teva, today I just have a headache amd shakiness but I know as soon as I eat it gets worse and later on in the evening I get worse I will carry on over the weekend and try and get in touch with gp again on monday

SlowDragon profile image
SlowDragonAdministrator in reply to Laura2207

Then more likely because you’re under medicated

Levothyroxine doesn’t top up failing thyroid, it replaces it, so we need to increase dose slowly upwards in 25mcg steps until TSH is always under 2

Most people on levothyroxine need TSH well under one

Laura2207 profile image
Laura2207 in reply to SlowDragon

Once I have upped my dose will that also help the feeling of something stuck in my throat? It's consistent throughout the day but gets worse sometimes also to a point where its painful, is there anything I can do to help relieve it also?

SlowDragon profile image
SlowDragonAdministrator in reply to Laura2207

Yes extremely common when under medicated. Should improve as dose is increased

Medics tend to dismiss it as anxiety related - globus pharyngeus

Laura2207 profile image
Laura2207 in reply to SlowDragon

Oh thats a relief! I was starting to panic with that aswel, its all quite scary especially when you don't know alot about it all

jimh111 profile image
jimh111

Would genearallly agree with comments on not having Teva (I've never had it) as there seems to be many complaints about it. The only time I've had a problem with a brand of levothyroxine was when I had 50 mcg tablets with my 100 mcgs, both the same brand, I got around this by splitting 100 mcg tablets. For now I would accept whatever brand you get as your dose will be changing over the next few months. Once you've settled on a steady dose you can judge whether any particular brand is good or bad for you.

It's a good idea to stick to one brand once you are on a steady dose, you can do this by asking your doctor to specify the brand or coming to an arrangement with your phamacist to give you that brand. For now the important thing is to get a dose increase, you can worry about the subtle differences in absorption between different brands when you are stable. I just take whatever brand is supplied and can't tell the difference (I'm currently on levothyroxine only).

Laura2207 profile image
Laura2207 in reply to jimh111

Have all your symptoms gotten better on levothyroxine only? If you are at the right amount of medication needed to be taken? Once I have upped my dose again I will carry on monitoring symptoms if they start to help then I will make sure I stick to the same brand, now I know about it I can double check whilst at the chemist, I usually pay for prescriptions, so my first batch was Mercury pharma, my next batch I picked up yesterday was free with my medical card and is now teva maybe that's the reason they swapped brands as one I paid and the next was on the nhs

jimh111 profile image
jimh111 in reply to Laura2207

My case is very complex. Due to a long period of high dose hormone my TSH became permantly low. As it's lockdown I'm trying to get my TSH to pick up but my symptoms are substantial. This is a trial I'm doing, my symptoms resolved on 50 mcg levo plus 55 mcg liothyronine. I don't believe I need to take thyroid hormone if I can get my TSH to recover. My problem was not a failed thyroid gland. If I go into my case it will definitely confuse you, it's highly technical.

The chemist will usually get in the cheapest available at the time as they receive the same payment for whatever brand they get as theoretically they are all the same. You can always ask for a particular brand and they will usually oblige but I don't think it matters much at the moment as your dose will be changing over the next three to six months.

Laura2207 profile image
Laura2207 in reply to jimh111

Sorry didn't reply, past 2 days have been awful, felt so ill, seemed to progressively get worse throughout the day, woke up today and domt feel half as bad! Typical whrn I finally got hold of my gp and he had me in for more tests this morning, he is doing tests I had last time plus thyroid peroxidase abs, im assuming that is the antibody test?? He also said I could be having a reaction to the levothyroxine with how I described some symptoms, he didn't say much after that, hasn't put Mr on a higher dose etc just that he will speak to me Monday when he gets the results back from the lab, I also started the teva brand today so far all ok but time will tell I suppose, Oh wow jimh111 I didnt realise how technical it all was and how there is so much more to it all! I was definitely naive at first, thinking there wasn't that much to it, take some medication, feel better and then off medication, I was definitely wrong! I hope it all works out for you though and ypu are able to sort it and come off your medication with no problems, I will have my fingers crossed for you.

Laura2207 profile image
Laura2207

Had thyroid test back, still waiting on other tests, but tsh and t4 have had a big change my tsh was 47 and t4 was 8.7 4 weeks ago and these results show my tsh is 8.3 and t4 is 18.5? It's like they have completely swapped? Can that happen that quick in that short amount of time? It has only been 4 weeks with 50mg of levo.

SlowDragon profile image
SlowDragonAdministrator in reply to Laura2207

The aim of levothyroxine is to increase the dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each dose increase) until TSH is ALWAYS under 2

Most people, when adequately treated will have TSH well under one

Most important results are always Ft3 followed by Ft4

Aiming for Ft3 at least 60% through range

Important to get vitamin D, folate, ferritin and B12 at optimal levels

It’s likely to take several dose increases in levothyroxine over next few months

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

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

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

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