help… no longer tolerating meds

[Littledancingtiger]

Hi all, I am having persistent issues after having Covid in May.

Covid symptoms persisted for 2 weeks after which I felt ok until I didn’t at the beginning of June… very dehydrated, peeing a lot, adrenaline type feelings, indigestion and was getting neuropathic sensations in my skin. This so far has been up and down. No longer feel dehydrated or peeing a lot but neuropathic sensations persist and I’ve gotten more weak. I’ve now stopped tolerating my thyroid medication.

My ferritin level has dropped considerably during this time and is now at a measly 30 (nhs range starts at a paltry 10-200) along with my vitamin d level plummeting and I’m struggling to tolerate my usual NDT medication as it’s giving me “panic attack” anxiety/adrenaline like symptoms. Heavy breathing, racing heart. I have been using NDT successfully since 2015 and feeling well. The only time I did not feel well on it was when I was over dosed - I am definitely not over dosed at the moment. I’m considerably hypo and have Hashimoto’s disease. Before May I was doing really well.

I’m incredibly pale and spotty and keep complaining of being weak but I’m also very fatigued with headaches and can’t sleep. Hair is dry and falling out. GP just wants to dish out antidepressants. They’ve said long Covid clinics no longer exist and if it’s that I have to live with it.

Ferritin for me is usually 70-90 so this really is a significant drop in just a few weeks. My MCH was also very nearly high out of range 31.9 and range ends at 32 which I think points to iron anaemia? Sorry again I don’t have the starting point of the range to hand.

I’m not quite sure how to proceed with all this by myself. My serum copper level was also lower end 14.5 range 12-26. I am waiting on my zinc result and selenium was rejected by lab as something wrong with the sample so needs retesting.

I know I need my thyroid medication but it’s making me want to jump out of my skin at the minute, I’m guessing my dismal ferritin is behind it and potentially messing with my adrenals along with potentially my lower vitamin d?

B12 was 2000 as on injections once a week (I have pernicious anaemia) and folate was 12 again don’t have the ranges to hand but I believe range for folate starts at around 5 and 20 might be the max.

Yesterday was particularly terrible, my period arrived a week early and heavily and after my blood draw I just got weaker and weaker (passed out and the nurse had to run and get me some juice, I’m also covered in bruises from the blood draw which isn’t usual) my partner almost called an ambulance that evening but after getting some dark chocolate down me and some iron water my head eventually stopped pounding and I was able to have a coherent convo and get myself to bed. Before this I was hysterically crying constantly. My head feels a bit more on right today.

In this situation…. Do I remove my thyroid medication temporarily whilst I fix the vitamin levels and then slowly reintroduce? I’ve tried to back down on my dose but I’m still having the wanting to jump out of my skin panic attack like feelings after taking it. I’ve always been quite sensitive to T3 but normally just when I’m over dosed.

I’ve booked an appointment with a thyroid U.K. recommended doctor who can prescribe T4, T3 and NDT and look at vitamin levels, adrenals and sex hormones but this isn’t scheduled to take place until mid August. I’m at a loss as NDT had worked so well for such a long time and I have always kept a close eye on myself adjusting as needed but I’m out of my depth here and I think I need some proper help and guidance now.

GP again is absolutely useless, has seen the state of me and just wants to throw a million antidepressant or sleep and pain type drugs at me. Have had arguments in the past when they told me vitamin B12 was giving me a placebo effect…. I’m diagnosed with pernicious anaemia… so it’s literally keeping me alive. I can’t trust them to correct anything. When they pulled my B12 off me my liver was starting to fail.

Apologies for the long ramble just a bit freaked out and I’ve never had any luck with nhs for any of my conditions, I’ve always had to self help and I’m feeling a bit out of my depth!

[RedApple]

'Do I remove my thyroid medication temporarily'

Littledancingtiger, If you haven't tested thyroid levels very recently, then that is perhaps your first step. Without this information, no-one can give any useful help. As you are self medicating, you probably need to do self testing too. monitormyhealth.org.uk/our-...

[Littledancingtiger in reply to RedApple]

Hi - I do monitor regularly and self tested in June but my ferritin has dropped since then and this is round about when I stopped tolerating the meds. I definitely wasn’t over medicated in June so imagine I won’t be now… I just can’t tolerate the meds at the moment.

Thyroid labs

[RedApple in reply to Littledancingtiger]

So, TSH was 0.008 (0.27-4.2)

FT3 5.1 (3.1-6.8)

FT4 17.3 (12-22)

Exactly what thyroid medication and doses were you taking at that time?

[Littledancingtiger in reply to RedApple]

2 1/2 grains NDT topped up with 25mcg Levo. This had been working since 2019.

My T3 level here had dropped from 5.6 from prior testing in November last year.

Since iron levels have dropped etc. I now can’t seem to tolerate NDT at all without “panic” like feelings after I take it so unsure what to do.

[RedApple in reply to Littledancingtiger]

'now can’t seem to tolerate NDT at all ' Are you taking the exact same brand and, importantly, same batch of NDT as you were when that test was taken?

[Littledancingtiger in reply to RedApple]

Yes all the same… my partner suggested I try swapping batches which I have done now but the feelings still persist.

[RedApple in reply to Littledancingtiger]

So, on the basis of 'only change one thing at a time', here's what I might do in your situation.

Keep taking the 25mcg levo evry day as usual. Drop the NDT entirely for one day. Then, re-introduce NDT at 1 grain. Hold at one grain for a week, then add half a grain for another week.

Go by how you feel at this stage, and if it seems right, stick with that. If not add another half grain. By then you're at two grains, so hold there for at least a couple of weeks before re-testing thyroid levels.

Others may have better suggestions 😊

[Littledancingtiger in reply to RedApple]

Thanks so much, focusing on iron and iron rich foods and tolerating my meds the way you suggested at the moment

[Sparklingsunshine]

I think the first step to step towards better health is dumping your GP, he sounds utterly appalling, and Long Covid clinics are not a thing of the past, a quick google will show they are still up and running.

Maybe you dont have a local one but your GP can still refer you out of area, if you are ok to travel. More likely he either doesnt want the cost of the referral coming out of his precious budget or he thinks you are anxious/ depressed/ hypochondriac, hence pushing the Antidepressants, which incidentally get extra funding from the Government.

No wonder we've seen an explosion in the numbers of prescriptions for these medications in the past few years. They serve a twofold solution imo, they attract extra funding for the practice, which are all private businesses now and they get to label you as having mental health issues, which follow you around from then on. Meaning you are less likely to get the proper investigations you need. Plus they also get to fob you off and get you out of the door.

I appreciate I sound very cynical but I've had several chronic conditions for a long time and I've seen how the NHS works and it a'int pretty. I've also seen and spoken to other people who report similar experiences.

Particularly regarding Long Covid/ CFS/Fibro type conditions. And telling someone they " have to learn to live with it" is actually sadistic. I think you need to tell this GP to go forth and multiply frankly and find someone with a bit more empathy and who is willing to refer you to a LC clinic.

[Littledancingtiger in reply to Sparklingsunshine]

I completely agree with you. One look at me and you can see I am very very unwell but the convos always gear towards “have you been feeling low lately, is there a stressor in your life” and you know you’re about to be slapped with antidepressants and a mental health diagnosis despite the fact I have numerous autoimmune diseases and even though I’m feeling low unsurprisingly because I have very real physical symptoms. The worst thing is I’m really struggling to advocate for myself as I’ve gotten worse and worse in the last few weeks. Family are supportive but don’t know what to do.

[Sparklingsunshine in reply to Littledancingtiger]

As I suggested dump this GP, he isnt going to make you any better. Either try and see a different GP in the practice or change surgeries. And dont be fobbed off, you deserve a referral to the LC service.

I do sympathise, I have Ehlers Danlos, Fibro, hypo and PA as well, so understand how unwell you must be feeling. Has your GP withdrawn your B12 injections? As that wont be helping.

[Littledancingtiger in reply to Sparklingsunshine]

No I self source and have all the stuff to self inject. It’s like my body has gotten severely depleted of everything and when I try to do anything I have really really strong reactions to it and can’t balance out.

So I don’t know how to sort it all out…. i badly need the iron last night it perked me right up and made me sleepy but I started reacting to it with fast breathing and a pounding heart earlier this morning after I’d taken my thyroid meds.

It’s made me wonder if I need to focus on addressing stuff slowly and one by one and maybe I need to chuck the thyroid meds temporarily as I think the T3 is too much for me in my current state.

Maybe if I raise the vitamin levels without that I”ll be able to tolerate it all again. It’s like my system is severely depleted but needs a gentle approach and can’t cope with everything at once.

[Sparklingsunshine in reply to Littledancingtiger]

Well we always advise trying one thing at a time, if you try more than one you wont know if its helping and also you can get side effects or they can cancel each other out. Do you take iron supplements via the NHS or source your own?

I had a lot of issues with iron when I was younger, I'm a strict vegetarian which doesnt help but I also have absorbtion issues as well. I used to use Ferrous gluconate as I found it the gentlest one. Fumarate and Sulphate caused digestive issues for me.

I'm surprised that you dont get B12 jabs on NHS or do you SI in between?

[Littledancingtiger in reply to Sparklingsunshine]

Yes I get them on nhs my health issues really kicked in when they cut them from 8 weekly to 12 weekly and I got really really sick. I then started to self inject in between. I’ve never really had issues with iron so this is new for me but I’m wondering if this is why I now can’t tolerate my meds.

GP has given nothing for iron but I know 30 is hardly normal! I look very anaemic currently.

[Sparklingsunshine in reply to Littledancingtiger]

I know a lot of members have raved about Haem iron supplements. I think they come from the USA, 3 arrows or something. I'm sorry I cant be more specific. Maybe start a post asking for advice or suggestions. I'm assuming you're a member of our PA forum? I've never gone down the SI route but am actively considering it.

[Sparklingsunshine in reply to Littledancingtiger]

And for your perusal here are the current list of NHS Long Covid clinics as of April 2024. england.nhs.uk/coronavirus/...

[sparkly]

Hi there, your post struck a chord with me, mine wasn't due to covid though but this still could have some bearing on you if you're a certain age.I had been doing OK on t3 only for a few years then out of the blue my t3 wasn't working. Would up, down or stop and still felt terrible. My endo had gone as far has he could with me so I found a private endocrinologist who was amazing, unbeknown to me she was a expert menopause specialist too.

Straight away she said I was perimenopause and this was causing my issues.

I hadn't even heard the word before let alone knew what it meant.

As i was still having periods and no hot flushes menopause was ruled out by gp and my endo..how wrong they were

It took about 9 months to finally find right hrt regimen and and further 7 months to feel human again. In that time i also tried liquid thyroxine again but had to stop after a few months and finally went back on T3.

Sex hormones and thyroid hormones have played havoc for me. It's really difficult knowing which causes what symptoms as they can over lap.

I just commented on a post about brain fog which I thought was down to thyroid but turned out low testosterone was the culprit.

Luckily I think I'm post menopause and finally balanced in the sex hormone department.

[HEA72 in reply to sparkly]

Hi Sparkly

This is really interesting. I found I became less tolerant to thyroid meds as time went on and it's only recently I've realised it maybe because I'd started my perimenopause years. I'm now on HRT and with some tweaking I'm now doing well on it. I've been off thyroid meds for 18 months and wondering if I'd tolerate them again, now my sex hormones are being addressed. Did you find you tolerated the T3 again once on HRT? Are you happy to give me the name of the private endocrinologist you saw (private message me of course with this)? As I'm keen to see one who has a good understanding of both thyroid and menopause/sex hormones. Thank you

[sparkly in reply to HEA72]

I can't remember how long i wasn't on any thyroid meds, but no more than 2 months I'd imagine. I know I tried liquid thyroxine again whilst working up my dose of estrogel, but i only lasted a couple of months before feeling dreadful on it again.I do know that whenever I've stopped t3 for a month or two, then I've always started back with the smallest dose and just increased when my body tells me.

I'll pm you the name of the consultant, but sadly i do know she isn't taking on any new patients at the moment. My friend tried to make an appointment 2 weeks ago and was told this from her secretary.

[HEA72 in reply to sparkly]

Thank you Sparkly. Yes please. Would you PM me your consultant's information.

[sparkly in reply to HEA72]

Oh I am sorry, I forgot. Will do it now

[Obsdian]

Your situation sounds complex. I noted in there you are also potentially struggling with your blood sugar. A test for diabetes might be good too.

[Littledancingtiger]

Thanks everyone big update saw a much better GP today and was absolutely amazed!

He is running all kinds of tests for me now, says absolutely post viral issues and thinks it will just take some time to improve and put right. Mentioned it could be 4-6 months. Not to panic and he’s convinced as I had got myself so well before this won’t be forever and is just temporary.

He said we can look into adrenal fatigue - said this isn’t recognised in the nhs but it absolutely should be and could well be an issue though he said some testing may need to be privately.

Also said if I need to go to a long Covid clinic then he will sort it.

I’ve said I am going to go and sort thyroid privately as have always wanted to “go straight” with it. A former GP used to monitor me self sourcing NDT and then I monitored just myself when he retired but in the last few years before getting unwell I was thinking more about getting levo and lio or NDT privately and being monitored there. He was absolutely fine with that and said levo isn’t for everyone/knew about poor conversion.

Absolutely blown away.

[1tuppence in reply to Littledancingtiger]

Delighted for you! Happy landing

[humanbean]

I've had Covid four times now. The worst were the first and second attacks, and they have got less and less bad with each attack.

But after the first and second time I got Covid I stayed feeling unwell for quite a long time. I've also struggled after my vaccinations. I feel as if I have Covid with each of those.

I wonder if Cortisol is affecting you - it is one of the things that I thought was affecting me for quite a long time after getting Covid or vaccinations. I don't know whether your cortisol is or was high, low, or good before getting ill, but when it changes it can make you feel terrible if the level you end up with is not what you are used to.

There is also a relationship between thyroid hormones levels and cortisol. If the body can't produce enough thyroid hormones for its needs then it substitutes with cortisol. And although higher levels of cortisol will keep you alive they aren't a good substitute. The other factor is whether your adrenal glands are capable of producing the cortisol you need. If they aren't then you will feel very unwell.

I've read quite a lot about Long Covid clinics, and none of what I've read is very reassuring. They tend to treat the patient as if they have ME, but they are using old guidelines for ME. In other words they tell patients they need CBT for their mental health, and also exercise. Personally I wouldn't go to a Long Covid clinic. I look after myself. After each bout of Covid I did get better eventually, although my lungs haven't recovered completely and seem to have been damaged - but then I have a history of being a heavy smoker. I stopped years ago, but the lung damage never really disappears, and Covid exacerbated it a lot.

I think you shouldn't try and change anything much with your thyroid or nutrients. Optimise the nutrients you can, get plenty of sleep, and resist the temptation to change your doses of thyroid hormones by dramatic amounts. I would second  RedApple 's suggestions in this reply :

healthunlocked.com/thyroidu...

...

You might find these links of interest :

paulrobinsonthyroid.com/sym...

paulrobinsonthyroid.com/hig...

[Littledancingtiger in reply to humanbean]

Thank you- I’ve been going along with Red Apples suggestion re: meds.

Covid has hit me like a freight train so it feels like I’m having to start over with everything slowly and get my body used to things again it’s reacting very hypersensitive to anything I put in at the moment! My thyroid meds are top of my agenda to get right before I do much else at the moment. It’s like my body is in a state of shock, hyper alert and doesn’t know what the heck is happening.

I definitely suspect my cortisol is totally off whack. It was always fine before and never had any med intolerance and always fine with med raises. It feels like my body is stuck in fight or flight so I think you’re spot on. I have been stuck waking up with adrenaline at 2/3/4am and covered in a cold sweat. Last night was the first night I woke up at 4.30 but no cold sweat or adrenaline and I felt more sleepy yesterday, followed reduce meds for a week.

My partner is saying I need to be patient and very slowly slowly increase things.

Thanks for the tip re: long Covid clinics. I suspected as much unfortunately.

[humanbean in reply to Littledancingtiger]

Do you supplement magnesium? If you don't it would be worth a try. It helps people to relax and can help with sleep problems. It is best taken in the evening. It is often mentioned on this forum if you want to read up about it.

There are many different kinds of magnesium supplements and they vary in how good or bad they are.

For info :

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

One thing to know about magnesium is that if any excess is taken it is excreted by the kidneys. Therefore it should be avoided by people with poorly functioning kidneys because it could build up.

[Littledancingtiger in reply to humanbean]

Thank you - GP has actually put magnesium on my blood request form. I did supplement it before all these issues but I started reacting badly to every single supplement I was putting in so I’ve gone back to the drawing board and dialled everything back. Trying to focus on good nutrition and getting my thyroid meds to a tolerable place. I don’t think I can handle chucking a load of supplements at myself at the minute it’s going to need to be slow.

[humanbean in reply to Littledancingtiger]

GP has actually put magnesium on my blood request form

Do you mean that your doctor is asking for a magnesium test? If yes, it isn't a good test.

If you look at Table 2 in this link :

ncbi.nlm.nih.gov/pmc/articl...

you'll see that 0.3% of Total Body Magnesium is found in the serum (i.e. the bloodstream), and this is what is measured by the standard blood test for magnesium.

If that percentage drops the body will "steal" magnesium from elsewhere in the body. So the magnesium in the blood is kept at a good level while the amount in the soft tissue and/or the muscle and/or the bone could be low or deficient.

This means that the magnesium blood test is not a reliable indicator of the body's stores.

As long as your kidneys function reasonably well you can supplement magnesium.

It is worth knowing the symptoms of magnesium deficiency and toxicity if you plan to supplement magnesium.

Deficiency : en.wikipedia.org/wiki/Magne...

Toxicity : en.wikipedia.org/wiki/Hyper...

The highest recommended dietary allowances for magnesium intake are :

For men : 420 mg per day

For women : 360 mg per day.

[anakondratenko]

Littledancingtiger can I ask you how you are feeling right now? your post speaks to me so much as I am literally going through something 100% similar.. was taking T4/T3 since 2019 with no problems and literally since June of this year cannot tolerate well any increases in thyroid meds and had to dump T3 altogether for a while.. do you feel better? did something work for you?

[Littledancingtiger in reply to anakondratenko]

unfortunately so much is wrong with me after contracting Covid. I am actually back up to my usual thyroid dose now and sleeping again but I have multiple vitamin deficiencies and many horrible symptoms so I don’t feel at all better.

Suspect Covid has trashed my gut and caused all sorts of problems which I’m struggling to rectify. One big part is dehydration and struggling to keep my electrolytes balanced. My thyroid meds are unfortunately just one small part of all of what is wrong so my situation is probably a bit complex to give you any meaningful guidance.

I hope you’re able to get back on track.

[GlowCoach Administrator in reply to Littledancingtiger]

Vitamin deficiencies are part and parcel of a thyroid condition.

Can you share your results so members can make suggestions for supplements?

[Littledancingtiger in reply to GlowCoach]

Yes I know, they were balanced before Covid and now have all crashed out.

Unfortunately I am struggling to tolerate anything supplement wise after Covid as I’m having all kinds of weird reactions and thus trying to build things back up is proving incredibly tricky and complicated. The dehydration/electrolyte imbalance seems to be at the core of it and is one the things which is severely tripping me up. Covid has completely messed up my gut it seems and putting it right is something I am trying to seek help and support with.

I think I am beyond advice from here but thanks a lot for offering.

[GlowCoach Administrator in reply to Littledancingtiger]

Omega 3 is recommended for long covid and might help you in time tolerate more supplements. Good luck.