Post updated! always poorly?! Hypothyroid

[Ceer]

I have just been diagnosed with autoimmune hypothyroidism

But I am constantly POORLY! I feel like I am catching a bug/flu every other week! My energy levels are on the floor

Does anybody else feel like this?

I don’t really understand the impact the condition has on my overall immunity, is there a link?

I have tried to look online but I can’t seem to find anything?

Any help/tips/answers would be amazing

Added the below as a comment before realising I can edit the post!

hi all,

Thank you so much for all of the replies!

One of the responses asked for my test results and reference ranges - ranges in brackets

My TSH is 7.89MIU/L (0.55 -4.78)

Free T4 9.6pmol/L (11.5-22.7)

thyroid peroxidase antibodies >1300 ku/L (<61.0)

I don’t get my T3 tested

I have been medicated around the last 10 years on levothyroxine in different doses over the years.

It was only recently for the FIRST TIME EVER my GP decided to test my antibodies! I’ll add I have been under the endocrinology team since I was diagnosed with “hypothyroidism”. It’s only now it’s been diagnosed as autoimmune.

I currently take 125mg of levothyroxine daily and get blood tests every 6 months to check the dose is still correct.

However I have always suffered from the cold/flu symptoms every other week, and when I do get a cold it quickly becomes a chest infection

I had a period last year where I suffered with a headache constantly for months and had MRI scans and nothing ever came back abnormal

I appreciate all the comments saying once medicated it gets better, probably my own fault for not mentioning I am already medicated - but it really hasn’t for me, the last 10 years I’ve suffered, and it’s beginning to take a real negative affect on my life and my work

[GlowCoach Administrator]

Can I ask how you take your Levo?

Always take Levo on an empty stomach an hour away from food or caffeine containing drinks (other than water) & other meds. Many people find taking it at bedtime works well for them.

Has your GP increased your dose? You should be getting a 25mcg dose increase.

Essential to test key vitamins.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

[Ceer in reply to GlowCoach]

I have tried both first thing in the morning and last thing at night with a glass of water, and nothing before or after it for an hour.

I personally find it better taking it in the morning.

My dose has just been increased from 50 to 125 in the last few weeks, and these results were after the increase. I have spoken to my gp since the results and they have no interest in increasing again.

I take folate, vitamin D and a multivitamin every day also around mid day with my antidepressant, my folate levels are really bad as I have PCOS too 🥲.

[Ceer in reply to Ceer]

Just found my last panel

B12 - 378ng/L (211-911)

Folate 1.8ig/L (>5.4)

Ferritin 156ug/L (10-291)

[GlowCoach Administrator in reply to Ceer]

How long after the increase were the results. It takes 6-8 weeks for levels to settle enough to be accurate.

According to your results you're still hypo....

Most people need a B complex that would contain B12 & folate as well as all the other B vitamins.

Essential to test vitamin levels at least annually.

Multivitamins are not recommended in this group for multiple reasons including being low dose, cheap, inactive vitamins that wont raise your level to optimal. Also contain iodine that isnt recommended for hypo people.

[Ceer in reply to GlowCoach]

My thyroid results were 3 weeks after dose increase

Oh really? I never knew it wasn’t recommended! My doctor has never said anything against them to me! Do you recommend any specific replacements?

[GlowCoach Administrator in reply to Ceer]

You could ask to be retested after 8 weeks on your current dose. Hopefully things will look a bit different by then as you had quite an increase.

Doctors get no training in nutrition so best not to take advice about vitamins from your GP.

Currently you arent taking a good B12 so the B complex would cover you for that and includes folate.

B complex suggestions: Slightly cheaper options with inactive B6:

amazon.co.uk/Liposomal-Soft...

Contains B6 as P5P an active form:

bigvits.co.uk/thorne-resear...

healf.com/products/basic-b-...

Explanation about the different forms of B6:

helvella.blogspot.com/p/hel...

B complex comparison spreadsheet:

healthunlocked.com/thyroidu...

[Ceer in reply to GlowCoach]

Thank you so so so much for your advice!

[Ceer in reply to GlowCoach]

I currently take 5mg folate tablet and the vitabiotics brand vitamin D 1000UI dose and just a generic multivitamin

[GlowCoach Administrator in reply to Ceer]

1,000iu is probably not enough. Most members here need a minimum of 3,000iu.

Have a look at the Better You Vit D + K2 3,000iu mouth spray. 1,000iu per spray.

Why are you taking 5mg folate?

[Ceer in reply to GlowCoach]

My folate was prescribed for my pcos

[greygoose]

My dose has just been increased from 50 to 125 in the last few weeks

Did your doctor really increase your dose by 75 mcg in one go? Increases shouldn't be more than 25 mcg every six weeks. That will be a terrible shock for your body, and will take a long time to settle down and make you feel better. I think you have a very ignorant doctor, there. I'd go so far as to say dangerous. Is there someone else you could see?

But, at least you now know why you always felt so terrible, even though taking levo: you were still very, very hypo.

My doctor has never said anything against them to me!

Your doctor wouldn't know. Doctors know nothing about nutrition, they don't 'do' it in med school. But mult-vits - especially generic ones - contain the cheapest ingredients - which are not the easiest to absorb - and not enough of them to correct a true deficiency. They also contain many things you probably don't need, like iodine and calcium, and which might be doing you more harm than good. Also, if they contain iron, that will block the absorption of most other things, so you're really just pouring your money down the drain.

We always recommend that you get vit d, vit B12, folate and ferritin tested and then just take what you need - more is never better. We can help you with drawing up a supplement plan when you have the results.

[Ceer in reply to greygoose]

hello,

Yeah my doctor did increase my dose that much in one go. I have had similar dose changes in terms of quantity both up and down over the years, I’ve been on Levo for around 10 years. With both my GP and endocrinologist being happy with the dose increases. I have been medicated a long time, but not educated at all about it. My only assumption as to why they are happy with the increase at that level is maybe my weight?

It was only recently my antibodies were tested and the recent diagnosis of it being auto immune.

I don’t have a recent vit D blood test, but the other 3 (folate, b14 and ferritin) were these results - references in brackets

B12 - 378ng/L (211-911) Folate 1.8ig/L (>5.4) Ferritin 156ug/L (10-291)

until posting in this forum I have never really understood the true extent of not being educated enough on the condition, what’s best for me and what to take.

I’m so thankful for every comment on here so I can learn

[greygoose in reply to Ceer]

No, your weight has nothing to do with it. Doesn't matter what you weigh, changes in dose should only be maximum 25 mcg every six weeks so that your body has time to get used to it and adapt. The changes they are making is just down to pure ignorance, that's all - ignorance and a lack of consideration for the patient. They just don't care.

Your B12 and folate are both too low. B12 should be at least 550 and folate in double figures. Ferritin looks OK but did they test your CRP at the same time? CRP is an inflammation marker, and high levels of inflammation can give you a false high result for ferritin.

For your Bs - which must be adding enormously to your symptoms - I would suggest that you get some sublingual methylcobalamin (B12), 1000 mcg, and take that for a week. Then, get a good B complex, with methcobalamin and methylfolate, and start taking that every day along with your sublingual B12. When the pot of B12 is finished, just continue with the B complex daily as a maintenance dose.

[humanbean]

There are so many reasons why hypothyroid people don't feel well, and some have already been mentioned.

1) Changing your dose in enormous amounts (e.g. 75mcg per day) rather than increasing gently is a very bad practice.

2) You don't have a Free T3 result. Free T3 is the active thyroid hormone that is required by every cell of the body. If you have too little Free T3 it will affect many parts of the body. Doctors assume that all patients supplied with Levothyroxine (aka T4) can convert T4 into T3 in various tissues and organs in the body and they will do this perfectly. This isn't true though. Lots of us are poor converters. In some cases improving nutrient levels will improve conversion.

3) Your TSH is too high showing that you are under-medicated - but if your last increase was the 75mcg increase and you have only been on your increased dose for a short time then your test results are not guaranteed to have reached their stable level yet, so your dose may end up being okay.

4) When the patient is struggling to produce sufficient T4 and T3 it stresses the body and causes the adrenal glands to try and take up the slack by producing cortisol (one of the stress hormones). But people's ability to produce adequate cortisol - not too much, not too little - varies. Both too much and too little cortisol can cause all sorts of symptoms.

paulrobinsonthyroid.com/sym...

paulrobinsonthyroid.com/hig...

5) Nutrient levels are often low in hypothyroidism.

B12 - 378ng/L (211-911)

Folate 1.8ig/L (>5.4)

Optimal for B12 is roughly 1000 ng/L

For folate it is roughly 15 - 20 micrograms/L. For someone taking 5mg folate your folate level is terrible. What form of folate are you taking?

Some useful links :

b12deficiency.info/signs-an...

perniciousanemia.org/b12/le...

perniciousanemia.org/b12/le...

perniciousanemia.org/b12/fo...

stichtingb12tekort.nl/weten...

The best form of B12 supplement for most people is methylcobalamin.

.

For the body to be able to metabolise B12 properly it needs folate.

Folic Acid should be avoided completely, instead people should be taking methylfolate or some other form of active folate, e.g. quatrefolate/quatrefolic

[Bluesadawg]

Rachel Hill is a hypothyroid sufferer who’se written several books on the subject & has info online that she’s won awards for. I’ve found her really informative & helpful

[Ceer in reply to Bluesadawg]

ah amazing, I’ll check out her stuff!

[Mcthirl]

my son gets flu like symptoms from my daughters cats, do you have pets?

[Ceer in reply to Mcthirl]

I have no pets

[SlowDragon Administrator]

which brand of levothyroxine are you now taking

Try to get same brand at each prescription

Retest 8-12 weeks after such massive dose increase

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Meanwhile work on improving low B12 and folate

[Ceer in reply to SlowDragon]

I have the “teva” brand and have had this consistently for around a year.

I will definitely request a repeat blood text in the next couple of months to check, thank you

[SlowDragon Administrator in reply to Ceer]

Teva upsets many, many people

Are you lactose intolerant?

If not

Suggest you request Mercury Pharma 50mcg and 25mcg tablets at next prescription

GP will need to amend prescription

Many people find Levothyroxine brands are not interchangeable.

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

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

July 2024

Crescent levothyroxine. Dosages: 12.5, 25, 50, 75, 100

(Not yet known if all approved dosages are or will be available).

Excipients: lactose monohydrate, maize starch, croscarmellose sodium, gelatin and magnesium stearate.

Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

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

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

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)

Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

How to get Vencamil stocked at your local pharmacy

healthunlocked.com/thyroidu...

Helpful post about different brands

healthunlocked.com/thyroidu...

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

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.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands

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

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

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).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

[SlowDragon Administrator in reply to Ceer]

was test done on these timings ?

[Ceer in reply to SlowDragon]

I am not lactose intolerant, so having lactose in the medication isn’t an issue for me. I don’t have any adverse reactions as such to the medication, just that my symptoms (feeling poorly all the time) never seem to go away, maybe this is the reason, I’ll try and discuss with my doctor changing brands.

I always have blood tests pre 9am due to work

[SlowDragon Administrator in reply to Ceer]

So ALWAYS take last dose Levo 24 hours before test

[SilverSavvy]

Lots of good advice and support for you here on the forum, as usual.

However, I just wanted to say how very, very sorry I am that ten years of your life have been stolen from you due to this disease and the ineptitude of the doctors and so-called specialists you have been sent to. It is heartbreaking to see such disgustingly bad practice amongst people who are supposed to be helping us feel better. I've heard some stories on here and I've had a bit of a journey myself but heck...75mg dose increase in one go? OMG, you poor thing.

I hope you stay plugged into this site, learn lots and manage to find a return to something like normality. I cannot recommend it highly enough.

As a poor converter of T4 myself, the knowledge here about optimal vitamin supplementation and checking T3 levels (which lots of NHS places now won't do) has been crucial for me. I mostly go private for my checks of all those through Medichecks. Their £89 Advanced Thyroid panel has been particularly useful in proving my case to docs who don't have time or clinical evidence due to shortfalls in the NHS'S own testing systems. We shouldn't have to pay out but, in my case at least, has been well worth it. They sometimes have 20% off so that's a good time to go for it. Or you can get 10% off as a Thyroid UK user, I think?

Big virtual hug to you and welcome to a place where folks DO help. All best wishes x

[Ceer in reply to SilverSavvy]

Thank you so much, being on this forum even for a few days has helped so much, I’m so grateful to each and every one of you. I’ve had some amazing tips, and knowing others feel this way and I’m not alone has really helped. T3 is never something that is tested for me, so I will push my gp for it and if they won’t then I’ll defo look into a private test.

I knew there was a lack of education around it, a “take these pills and you’ll be fine” attitude, but being here has really opened my eyes to the HUGE lack of education and dismissal of symptoms/doses/ needing advice.

[SilverSavvy]

Sorry, 75mcg not 75mg!!!

[Astlebridge]

I know how you feel ,I am just the same ,under the weather every single day and dreadful fatigue