Help and and advice appreciated. : Nice to meet... - Thyroid UK

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Help and and advice appreciated.

Adam40
Adam40

Nice to meet all of you and many thanks in advance for any advice or comments. Basically after some ill health which I initially thought was COVID I’ve been diagnosed with a under active thyroid and started on Levothyroxine, currently 75mg however I’m back for bloods tomorrow so will see if that stays the same, my initial questions are regarding symptoms or any side effects people respond with on the levothyroxine.

I suffer with energy levels, fatigue, stomach bloating, stomach problems, concentration levels, memory issues, low mood, low libido. Lately I feel like a completely different person I’ve been reserved about talking about how I feel due to everything else going on in the world but I hope talking with others can help me at least understand more about this and give me a ear to occasionally lend.

44 Replies
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SlowDragon
SlowDragonAdministrator

Presumably, looking at your name.....you’re male?

75mcg levothyroxine is only one step up from starter dose

Which brand of levothyroxine are you currently taking?

Teva brand frequently upsets many people

Do you normally take levothyroxine waking or at bedtime?

Are you currently taking any vitamin supplements?

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

About 90% of primary hypothyroidism is autoimmune thyroid disease

Ask GP to test vitamin levels and thyroid antibodies if not been tested yet c

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)

Is this how you do your tests?

Private 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

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is) ...

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

SlowDragon
SlowDragonAdministrator

Did you definitely have COVID ?

Some research suggests Covid may be affecting thyroid

Other viruses do so - eg Glandular fever

guidelines on dose levothyroxine by weight

Even if we 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 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.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Arlie123
Arlie123 in reply to SlowDragon

Sorry to butt in but do you have any links re glandular fever/viruses and the thyroid? I think this has happened to my friend and would like to share something with her.

SlowDragon
SlowDragonAdministrator in reply to Arlie123

Here you go .....EBV = Glandular fever

hypothyroidmom.com/hashimot...

thyroidpharmacist.com/artic...

drhedberg.com/epstein-barr-...

drchristianson.com/epstein-...

Adam40
Adam40 in reply to SlowDragon

I was tested twice for COVID and both times negative results but GP said not rule it out and could of been cause of the issues with my thyroid. I have just volunteered for the blood plasma donation as they will do the anti body test as part of the enrolment process and I would love to be able to do my bit to help out others during this time.

Anjo189
Anjo189 in reply to SlowDragon

I had glandular fever at 16 and was diagnosed with underactive thyroid at 21

Welcome to the forum

I replied to you earlier on a different post - about the need to get your actual results and to have an early morning blood test - but a few other things you may want to consider:

* you really need proper testing at some point, not just TSH. This means: TSH, free T4, free T3, thyroid antibodies (unless you already know these are high) and key nutrients - ferritin, folate, vit D and B12. I've had some success with my GP by saying that these are the tests recommended by Thyroid UK - but if your GP can't / won't test them, you will see LOTS of posts here about private testing. SlowDragon does an excellent summary of the available tests - and there are discounts through the main Thyroid UK site and of some things on a Thursday

* the easiest way to get your blood results is to register for on-line access; otherwise you are legally entitled to them, without giving a reason - but it's usually easiest to say "for my records"

* if you're new to Thyroid issues and the terminology it's well worth a good rootle through the main Thyroid UK site - and helvella's excellent glossary [saved in "pinned posts"]

This is a kind, helpful forum - so ask about anything you're unsure about.

Good luck :)

Adam40
Adam40 in reply to fuchsia-pink

Thank you so much for the reply and I will certainly be taking the time to look into every point you raise here for me and I do need it to broken down and explained in basic terms. 😊

Yes I’m a 40 year old male, thanks for taking time to reply and straight away your giving me information I have no idea about and will certainly speak to my GP about the points raised, so I’m guessing I should really get some external test done ? I went up from 50mg to 75mg after my last result ( only had the initial tests and 1 after ) and I’m expecting I’ll go up after tomorrow’s tests as I feel no difference in myself or symptoms, I take the tablet first thing with water before any food or coffee, accord is the brand I’m currently on and I spoke to my GP regarding side effects and was told it’s extremely unlikely to have any issue from this tablet. I must add I’ve been extremely disappointed and the lack of information I have been provided with from my GP after my initial blood test due to not feeling great it was the receptionist who called and told me the results and asked my to collect my prescription, only after I searched online about the tablets and a little bit more about a under active thyroid and calling the surgery back to speak to my GP did I receive any information from them. Any help and advice is really appreciated and I’m very optimistic that being here will help me feel a little more like myself.

SlowDragon
SlowDragonAdministrator in reply to Adam40

Many GP’s are pretty clueless about hypothyroidism

Despite there being around 2 million people in the U.K. prescribed levothyroxine and it being 2nd most prescribed medication

Getting vitamin levels tested and improving to optimal levels frequently significantly reduces symptoms

Very important to see if cause is autoimmune

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

What were your results at last blood test?

Adam40
Adam40 in reply to SlowDragon

I’m embarrassed to say that I have no idea regarding my results other than my GP stating that my levels still remained low and to collect a new prescription of the 75mg, having literally just been on my surgeries website I’m going to print out the form needed to get access to my records and I’ll put my results on here as soon as I can do so. Really appreciate your help and advice.

SlowDragon
SlowDragonAdministrator in reply to Adam40

Being hypothyroid causes LOW stomach acid (hence bloating, gut issues) and as direct result.....low vitamin levels

Are you currently taking any vitamin supplements?

We always recommend getting tested FIRST before starting on any vitamin supplements and never multivitamins

Low vitamin D almost always linked

pubmed.ncbi.nlm.nih.gov/300...

The thyroid hormone status would play a role in the maintenance of vitamin D sufficiency, and its immunomodulatory role would influence the presence of autoimmune thyroid disease. The positive correlation between free T4 and vitamin D concentrations suggests that adequate levothyroxine replacement in HT would be an essential factor in maintaining vitamin D at sufficient levels.

Low B12 common

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,

NHS only tests and treats deficiencies

Looking to improve vitamin levels to optimal

NHS will prescribe vitamin D if result is under 50nmol (some CCG areas will prescribe if under 80nmol )

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

Serum B12 at least over 500

Active B12 at least over 70 (private tests )

Folate and ferritin at least half way through range

Adam40
Adam40 in reply to SlowDragon

No currently I’m not taking anything, what would you recommend ? I was hoping to start my weight training again and take protein shakes but again unsure if I’ll be able have them now ? Thoughts please ?

SlowDragon
SlowDragonAdministrator in reply to Adam40

Don’t start any vitamin supplements until you’ve got vitamin D, folate, ferritin and B12 tested

You could take daily vitamin C

And would agree with tattybogle you probably need to get your own thyroid levels stable before any blood donation

You need enough thyroid hormones for every single cell in your body.

It typically takes 6-12 months to get levels stable. Likely to need at least 2 more dose increases in levothyroxine

SlowDragon
SlowDragonAdministrator in reply to Adam40

Thyroid patients need to avoid ALL soya if possible

Protein shakes often have soya in

Adam40
Adam40 in reply to SlowDragon

Why don’t they tell us this ? It’s ridiculous really. I’m so pleased I found this place and it’s blessed with such helpful people

Lotika
Lotika in reply to Adam40

Hello and welcome fellow lifter,

Yes, you can take protein shakes if you wish. Some people find going gluten free and then dairy free can help. There are some dairy free protein shakes out there. Or there’s always another chicken breast... and at least it is not super-processed, but oh yawn! I am trying to work out what DF does for me since the new year, so the whey base shakes are on hold...

With the lifting, a few things to note.

There are 3 thyroid hormones to think about. TSH, T4 (which is the medication as well, levothyroxine) and T3. The body converts T4 into T3 and it is T3 which generally makes you feel well. Exercise will lower your T3 level, so you will feel especially tired afterwards, more so than normal. You can exercise in the evening if this is a challenge. I had to just do short gym sessions - eg 30 minutes barbell squats one day and then upper body the next - to try to manage the T3 issues. Not eating enough calories will also lower your T3, so even more important than usual to eat well when working out. I have some of the challenges with weightlifting/ hypo listed in my profile, but I think I’ve covered it here, more or less...

Exercise is very likely to make you feel exhausted at the moment, though. On the other hand, it is good for the hypo body ache, so I say go for it, but listen to your body. I had some rather interesting joint flares, which I put down to working out when feeling especially hypo. .. again, in the profile!

Adam40
Adam40 in reply to Lotika

Thanks i will take a look at your bio, it’s another thing I’ve been struggling with listening to my body as I’ve always pushed myself but need to find a better balance, one good thing in a way is this fatigue and tiredness is giving me a better work life balance hours wise just need to better a nicer better person to be around when I am at home as I’ve been a very grumpy person to be around although my partner struggles to understand what I’m going through 🤷🏻‍♂️ It’s refreshing to be able to chat with people about this so thanks to all

Lotika
Lotika in reply to Adam40

Maybe direct the partner to this site? Your symptoms are textbook and it might make it easier for both of you to understand why you are feeling grumpy, which helps. My husband sometimes worries when I am feeling low that it is because he has done something wrong! We talk about that a lot and I reassure him by reminding him that I’ve never been quiet when he’s annoyed me in the past... :P

I struggled too as I’ve always pushed myself pretty hard as well, so I get that!

You need T3 in every cell in your body - including brain cells - to feel good, so that is why we get these depressive / low mood symptoms too as far as I understand. It will all lift as you get the medication right and it will improve as you get closer to the right dose.

Adam40
Adam40 in reply to Lotika

God that sound so good to hear it really does, I literally can’t wait to turn the corner and start to feel like myself again.

tattybogle
tattybogle in reply to Adam40

Don't be embarrassed :) ..... it took me nearly 20 years to ask what mine were. lol

I wish i could tell you that the lack of information you've been given is due to Covid pressures.... but , no , they've always been this dismissive of hypothyroidism... it's just not a spectacular or exiting enough disease.

They may not let you do the plasma thing, they don't let hypo's donate normal blood unless they've been on a stable dose for a while, can 't remember if it's 6 mths ?

Adam40
Adam40 in reply to tattybogle

Now that’s a shame as I was hoping if I didn’t have the anti bodies I’d still be able to help out by giving blood, I’ll see what they say regarding it but hadn’t actually crossed my mind until you just said that 🤷🏻‍♂️

SlowDragon
SlowDragonAdministrator in reply to Adam40

Ask at test tomorrow to include thyroid antibodies and vitamin D, folate, ferritin and B12

Adam40
Adam40 in reply to SlowDragon

I will do that 👌

Biggest thing I want to improve is my energy levels and fatigue as I’m a self employed builder and work long hours like most of us have to these days however I’m struggling to even complete normal hours, my concentration levels and memory are also a huge concern for me these are the issues that are really starting to get on top of me abs it’s hard for me to admit that as I’m always a very positive person despite what challenges I face, I guess I’m just a little down hearted as I was hoping this would be just a small issue and I would take a tablet a day and be ok .... well that’s how the GP explained things but the truth so far seems very very different.

Lotika
Lotika in reply to Adam40

In the end, yes, for most people, it is a case of take a tablet a day and feel fine. What they don’t tell us is that it takes a long time to get there. Unfortunately this is not a condition for the impatient! It takes a long time to get the dose right and you just have to keep on keeping on, knowing that you *will* get there... Go easy on yourself, as far as you are able, in the meantime.

I still struggle with being patient for those 6 weeks between dosage changes. It frustrates me because I feel as if I know after 2 weeks whether the dose is right. Unless you are very slight, 75 mcg is too low a dose for you. I weigh 9st and my levo was 100 mcg, to put that into perspective.

I can imagine (c/f my comments about weightlifting) that having a physically demanding job must be very challenging with this condition.

Also do take SlowDragon’s advice on getting vitamins sorted. It makes a massive difference. I’d recommend at least taking a vit d supplement and a selenium supplement. Both seem to help the body to convert T4 into T3, which is the hormone which makes us feel well.

Adam40
Adam40 in reply to Lotika

I’d expect my dose to go up again as I think it’ll probably be slow increases while it gets into my system, I’m going to try changing my time of taking to just before shut eye and see if that helps also, can I ask what vit d & selenium supplements others take or recommend ? Will these help with other issues ? The concentration levels and change in memory and focus ? The lower libido issue is also causing me concern.

Lotika
Lotika in reply to Adam40

Most of us take a whole host of vitamins. Not a multivitamin though! Definitely get the GP to check and if he or she will not, it is worth testing privately, as SlowDragon suggests. You will then know exactly which vitamins you personally need to target to feel better.

I particularly notice feeling worse if I don’t take selenium and vit d.

Basically, hashimotos will stop your body getting adequate vitamins from food, so supplementing is the way forward.

I currently take the following:

Selenium, vitamin d, magnesium, a multiple b vitamin, vitamin c with iron and zinc, omega 3, glucosamine and turmeric which is an anti-inflammatory... the last two are for the joint pain which the hashis causes.

Getting medication right will solve libido challenges and mood and brain fog. And the selenium will help too because it will help your body to turn T4 into the feel-good T3.

SlowDragon
SlowDragonAdministrator in reply to Adam40

Good short film to help understand how thyroid and gut are interconnected

drbradshook.com/understandi...

Adam40
Adam40 in reply to SlowDragon

Thank you

Hi, sorry you are suffering and glad you have found these lovely, informed people on here. I have thyroid issues (Hashimoto’s) and an old virus, EBV, that causes post-viral fatigue - it’s thought the virus can trigger the thyroid issues, as can other viruses. Just thought I’d mention re COVID antibody test, which you can do privately for c£90. It only tells if you’ve had it “recently”, in case you were considering it. Here is the blurb I got back on mine, ie there is no real way of knowing if not recent.

“Your result is NEGATIVE for the SARS-CoV-2 IgG and IgM antibodies.

This means you don't currently have COVID-19 antibodies, potentially have not been infected with COVID-19, and are unlikely to have any immunity.

The manufacturer states this test has a sensitivity of 100%. This means you can be pretty sure that you don’t have the antibodies on board.

If you think you have previously had typical COVID-19 symptoms but have a negative antibody result, you may not have built up any immunity to it, or your antibody levels have dropped since your infection. We know this is a possibility from trial data we have so far. Because of the high sensitivity of the test, if you have the antibodies, our test should have picked them up and given you a positive result.

There is some evidence to suggest that antibody levels in some people may drop to undetectable levels some time after infection, but other parts of the immune system stay active. These B cells and T cells might provide some level of immunity, but we don't have tests for them yet, and we don't know what level of immunity they might provide.”

Adam40
Adam40 in reply to Yppah

Thank you

PS Medichecks appear to have 25% off until midnight.

When you have done your vitamin testing you will find recommendations on here for makes of vit D, B complex, B12, magnesium and others. Seaside Susie gives good recommendations.

I would add to all the excellent advice you have been given - GPs think that levo is levo - it’s not. Accord (Actavis/Northstar) all the same product except for Northstar 25mcg which is Teva - gave me terrible side effects, extreme bloating, 24/7 stomach ache, 24/7 headache and constipation. Mercury Pharma gave me a constant headache. The only brand I can basically tolerate is Wockhardt . As these only come in 25mcg, it means taking multiple tablets but upside is, they are nice and small. I suggest you ask Pharmacist for a different brand at your next Prescription

So I went and got my bloods done on Monday and today I had to chase them up as I hadn’t heard any, all the receptionist said wasI have a prescription for increased dose, I asked to speak to a doctor and was told I must ring back in the morning to request that 🤷🏻‍♂️

Ive put the request in for access to my records and was wondering how long this should take so I can see my results and levels and share with you all. Feeling very low and very frustrated this evening

Lora7again
Lora7again in reply to Adam40

Does your surgery have Patient Access?

patientaccess.com/

Mine does and I can login and read all my results and records.

No they don’t unfortunately, I just signed up using that link and my surgery don’t support access

Lora7again
Lora7again in reply to Adam40

That is a pity because it is so easy just to log in and not get the receptionist involved in viewing your results etc. You are entitled to see all your records and results because it is the law but a lot of surgeries don't seem to want you to see them.

Here is a link

england.nhs.uk/contact-us/h...

I’ll speak to them tomorrow regarding it, should be automatically signed up really 🤷🏻‍♂️ or would that make to much sense

Lora7again
Lora7again in reply to Adam40

Unfortunately that doesn't happen and I actually worked for the NHS for many years but it didn't help me. You need to request your records and even provide a copy of your Passport for id ... that is what I had to do to see my hospital and GP records.

Would help the surgeries out with more people using online services

Lora7again
Lora7again in reply to Adam40

Yes it would but I honestly think they don't want us to know our results. I was left without treatment for over 2 years and you can read my story on my profile page if you are interested.

I think there are lots of people just like me who had no idea they actually have thyroid disease and are struggling every day.

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