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
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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.
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 🥲.
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.
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.
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
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
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.
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.
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
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
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)
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
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.
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).
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.
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
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.
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