On 100 mg Levo, annual blood tests due next month.
Hi, has anyone had their hypo symptoms ramp up ... - Thyroid UK
Hi, has anyone had their hypo symptoms ramp up after having covid? Had it August/September last year, put on 1.5 stones since. Thank you
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RaggedyA
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Long covid has affected my digestive system so my digestion is sluggish and I feel bloated - I don't actually have hypothyroidism I came on this site to research my daughter's health - but I do have long covid so I know where you are coming from quite a bit of burping involved and I have read other people reporting this
If you Google search thyroid and illness you will find many articles on how illness adversely affects thyroid function ft4 and ft3.
Thank you, I’ll have a look. The problem is that under active thyroid symptoms are so alike the long covid ones - which do I blame?! Now to ask gp for comprehensive blood tests… wish me luck!
shawsAdministrator
Quite a number of people complain of unexplained weight gain when they take levothyroxine. Sometimes it could be due to not being on a sufficient dose as the aim is a TSH of 1 or lower with both frees, FT4 and FT3 in the upper part of the ranges.
Thanks for replying. I’ve been on Levo about 11 years but changed to Northstar/Accord when I changed gp, due to a house move, last year. Maybe that has had an effect, it was two months before I had covid, could be a coincidence.
It’s the lethargy and depression that’re getting me down as much as weight gain. Weaned myself off antidepressants over 6 months after private endo said they mess up the thyroid, but at the time the gp has to balance the + and - effects, and after a total breakdown were necessary. That’s also when my weight rocketed. Don’t want to go back on antidepressants as have been off them 2 years now.
Definitely need to get bloods redone - why is even calling the surgery such an effort? I think because I don’t expect my request for comprehensive blood tests to be successful 😯 Thank heavens for this site and amazingly supportive admin 🙏🏻
I believe that some people can put on weight because their metabolism is so low because they are hypothyroid.
I also believe that some people cannot convert levothyroxine (T4) into sufficient liothyronine (T3). T4 is an inactive thyroid hormone and has to convert to T3 and it is T3 whichis the active thyroid hormone needed in the millions of T3 receptor cells in our bodies and brain and heart have the most . I also believe that many will feel better with a T4/T3 combination. There used to be a thyroid hormone replaement - the very original in use from 1892 - called NDT (dessiated thyroid hormones) that contained all of the hormones a healthy thyroid gland would do being made from animals' thyroid glands- but now withdrawn without notice and causing immense stress for those who had been taking this.
Originally we were diagnosed without blood tests but the skill of doctors and we were given small increases in dose of NDTs until we were symptom-free.
In the UK those we'd expect to be more knowledgeable seem to be less.
The following link might be helpful and it is from the USA and the 'name of the site' is appropriate, otherwise there would be no reason why a site like this should exist.
"Stop the Thyroid Madness'
so it is an appropriate name worldwide for millions to not be treated as they should be. The ones who do well on levothyroxine will not be searching the internet.
stopthethyroidmadness.com/h...
Thank you shaws. I checked out the website - just amazing. I’ve emailed a couple of pages to my phone to take along to next gp appointment as some people reporting good results are in the UK. Really going to push for NDT.I have to read the T4, T3 facts many times in an attempt to make sense of it. Feeling a bit of a numpty 🤪 … nothing new there!
Don't be disappointed if you don't get NDT prescribed because the professionals we expect to be more knowledgeable than us, the patients, have withdrawn this excellent replacement hormones and I believe without warnings.
It has been safely used since 1892 and lives were changed from then on and patients no longer died. It is a pity it has now also been withdrawn from the UK and, as usual, very little warning is given to patients.
The fact also is that False Statements have been made to enable them to do so, What kind of doctors are these that it all comes down to money and we, the patient are left high and dry and desperate as well as symptomatic.
A private doctor may prescribe for you but I think that would mean you'd have to purchase yourself and many couldn't afford to do so.
SlowDragonAdministrator
What were your thyroid and vitamin results last year
Do you always get same brand levothyroxine at each prescription
What vitamin supplements are you currently taking
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 with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
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 all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
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...
NHS easy postal kit vitamin D test £29 via
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Hi SlowDragon, and thanks for the list of things I should get tested.Don’t have last year’s results as had just changed surgery following a house move and didn’t want to be a nuisance. They only did TSH and vit d, despite me asking for others, and TSH was ‘within range’… what range?! My vit D was okay because I take supplements.
Had a complete health check by private endo almost 3 years ago which changed my life, also shed 3 stone in a year by changing my diet as it showed celiac disease (not the ibs I’d previously been diagnosed). I did the at-home blood tests a couple of years ago, all okay, but hated the blood letting and had plasters on 4 fingers as blood had retreated! Was going to request a referral to local endo but have heard she’s a diabetes specialist, admits she’s not up-to-speed with thyroid issues… so why are we sent to her?!
If money were not an issue I’d make the 5 hour round trip back to private clinic, but it is. I put it on a credit card last time. We shouldn’t have to, the supplements cost enough each month. Every day I take 1 Parma-Nord bio-selenium + zinc, 1 Quest once-a-day multi nutrients, 1 Lamberts MagAbsorb magnesium citrate 150mg, 2 Lamberts CalAsob calcium 800 mg + vit D, 1 Lifeplan iron fe 8mg, 2 Natures Aidfish oil 1000mg, 1 Lamberts vitD3 + K2 and 1 Power Health D3.
The calcium is for arthritis and osteoporosis, both diagnosed after mri and x-rays around 15 years ago. Being careful means I can live normally but has stopped activities like badminton and anything that puts a strain on my knees or lower back. Not good as exercise was stress-relief. Now I just walk, on the level.
Sorry it’s such a long post.
Is there a way of finding a good nhs thyroid endo in the East Midlands?
This site makes me realise I’m not alone, but that’s also sad.
Thank you for your help.
Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
Many thyroid specialists are currently doing consultations on zoom, so distance no object
You shouldn’t supplement iron unless doing full iron panel test 3-4 times year. Iron is extremely toxic in excess. It’s possible to have low ferritin and high iron
Medichecks offer full iron panel test
When was full iron panel last tested
Similarly shouldn’t supplement calcium unless calcium is low
Important to test vitamin D twice year when supplementing
You are legally entitled to printed copies of your blood test results and ranges.
Suggest you get hold of last years test results ASAP
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test folate, ferritin and B12 annually
Vitamin D twice year
Remember to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results
PS was trying to work out why I’m on iron. It’s following a blood test about 8 years ago when gp said it was ‘significantly below acceptable level’, so I’ve been on it since then with one follow-up check almost 3 years ago when a private endo said stay on it. Can’t afford to see him again, unfortunately, he was great.Changed my gp when I moved last year so will ask for referral to a local endo and hopefully they’ll do all necessary tests 🤞🏻
Also found the list of recommended endo’s so now have a name to request at my appointment. Nothing ventured etc.
Many thanks
Just reread, you asked about Levo. My new gp gives Northstar/Accord, not same as before but I can’t remember name of last one. Maybe I should ask for the oral solution. If only everything wasn’t such an effort at the moment.
Beware if get dose of levothyroxine increased to 125mcg that Northstar 25mcg is Teva brand and best avoided
Accord don’t make 25mcg tablets. Request 50mcg tablets prescription and cut in half
Thank you. I’m making notes to take to gp as my mind goes blank when I get there. Reading the support on here has helped, I was feeling very low - you are all ⭐️ ⭐️ ⭐️
COVID-19 messed up my blood glucose control which, six months later, may be getting back to normal. High blood glucose for extended periods gets converted to fat stores.
That makes sense. I wonder if it would be what made me crave sugary stuff as I was getting better after weaning myself off it over two years ago. I’m afraid I gave into it for the short high. Doesn’t totally explain the weight gain and lethargy as I’m eating less than before I was ill. Not moving as much though, especially in the hot weather. I looked on nhs site to see advice on coping with after-effects of covid if you’re hypo - 1st on list was ‘lose 15lbs’… you’ve got to laugh 😬
Hope you are managing to get back to normal.
Take care
I'm not sure (and who is?) what long covid might do but the second vaccine sure triggered all the unpleasant hashi stuff for me. So I assume that if the vaccine can do that the "real thing" would definitely cause problems. Just being mildly ill can do a number on your thyroid and thyroid hormone production from what I understand. I hope that you recover well and soon.
Hi buddy99, it seems a few people have had setbacks after covid or the vaccine - I don’t feel such an oddity or total wimp now!Actually read a few pages on the thyroid uk site last night, several times as it takes me ages to understand it… still not 100%, but a tiny flicker of understanding has occurred. I’m going to print a couple of pages off, highlight bits and take it to my next gp appointment in an attempt to get referred to an endo. I do not love my thyroid!!
Hope your hashi stuff is calming down now.
Take care.
RaggedyA, please love your thyroid. 
<3 It needs so much love being under attack. And it works so hard to bring energy to your whole body. It deserves to be treated like a very good friend who finds himself in deep trouble. I hope you will be successful in being referred to a really knowledgeable endo who will be able to support you in supporting your thyroid. All the best.
I think that the FLCCC have a protocol for treating long Covid, although it doesn’t seem to be called this, rather ‘long hauler’. I know nothing about their protocol so not making any recommendations.
Hi penny, I’d not heard of FLCCC, looked online, that’s helped. Thank you.‘Long hauler’ is appropriate for hypo too - dammit! At least I’m now using my slumped-on-the-sofa time to research and make notes ready for the next begging session with a gp, trying to think of it as not a total waste of time.
