Feel so poorly again, need some support - Thyroid UK

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Feel so poorly again, need some support

Jefner profile image
42 Replies

Think the heat has had an affect on a lot of us feeling worse but i am still feeling awful. Anxiety, nausea, fatigue, dizzy and depression.

I have these symptoms for most of every day, probs due to my high cortisol levels. They do normally ease off in the evenings but the long hrs of the day are so difficult to get thru. Have no energy to do anything but my mind wants too.

On the positive i have had a couple of good days this week but when the symptoms hit again it cancels the good days out.

What the hell am i gonna do if the t3 i started doesnt work because i dont have the strength to go through the motions of trying something else

Am having the thoughts of no longer wanting to go on again, its debilitating. Sat here in tears i feel that low

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Jefner
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42 Replies
Scazzoh profile image
Scazzoh

Hi Jefner, I am going through a bad patch too, at the moment, so, if it is any help, you are not alone. Could you try and concentrate on the fact that you had a couple of good days recently? You don't know that the T3 is not going to work, so best not think about that. Have you asked for advice on this post about your high cortisol levels? I do feel for you. There are lots of people here who can support you through this bad patch.

Jefner profile image
Jefner in reply to Scazzoh

Yes i look at my calendar where i write how good or bad my day has been but doesnt help when the symptoms come back

I take holy basil for cortisol

Scazzoh profile image
Scazzoh in reply to Jefner

I have a 'points' system in my diary, zero is awful, 10 is grand. I am around 3s and 4s at the moment. Sometimes you just don't want to be reminded do you?

Jefner profile image
Jefner in reply to Scazzoh

Worried about pet bunny as well, think she has gone blind in one eye

Scazzoh profile image
Scazzoh in reply to Jefner

what makes you think that?

Jefner profile image
Jefner in reply to Scazzoh

It has gone glazed

Rapunzel profile image
Rapunzel

(((Jennie)))

Have you ever tried CBT ? Sometimes your thoughts seem to turn automatically to the dark side and that will never get your mojo back !

I'm really pleased to hear that you've had some good days. Symptoms don't cancel out the good days, it's just life and hypo ! Sip a cold drink...OJ and some sparking mineral water are sitting by my side with some ice and a straw in a long glass; take joy in the little things and if you have a bad day, a good day is coming soon.

Is there a park nearby ? Go for a walk and get out in the sunshine - raise your Vit D levels for free ! You have to take some responsibility for your mood. Do something ! I almost guarantee you'll feel better for it !

Hugs, missus. This will pass xx

Jefner profile image
Jefner in reply to Rapunzel

Rapunzel

that's exactly what happens to me, because I have no-one around me to jivvy me up I get caught up in my symptoms and just fuel them. I try hard every day and keep telling myself to keep going, the symptoms will pass but during those desperate hours of the day nothing works.

I haven't tried CBT, I am in therapy at the moment but that doesn't help my thyroid and autoimmune condition does it. Can you do CBT online?

I have a park next to me but I am agoraphobic because of the anxiety, can't drive when I am tanked up with meds to get me through the day. Now the kids have finished for summer the noise is awful around me, when I am feeling bad I can't tolerate noise and just stay indoors with all the doors and windows shut to blank it out

in reply to Jefner

Jefner - this hot weather has been a struggle for many of us. This morning however was cooler and I was determined to repeat a little walk, more of a shuffle really, I'd done from home a few weeks ago because I remembered the fantastic feeling of well-being afterwards.

I passed a small church that was overlooking fields, I walked across these fields that were actually paddocks with horses (was followed) and savoured the view. Then it was a gentle climb to some woods, cursed the stile (never used to struggle with these) and enjoyed listening to birdsong whilst keeping my eyes open for any more wildlife that may have been hiding.

Then I crossed a golf course with far reaching views, another stile that took me along the back of a farm and before long I was back to the roar of traffic. Yes I was tired and my feet were again swollen but I returned home smiling.

Totally understand about how hard it is on your own but a challenge, however small, is so rewarding. OK, for me I still can't ride my mountain bike and not sure if I ever will BUT some fresh air with conducive surroundings is so good for the soul.

Hang in there.

Jefner profile image
Jefner in reply to

omg I wish I could have come with you, if I had the energy, sounds perfect and what I yearn for but I can't get to places like that where I live because I have to drive there and won't if I am tanked up on Diazepam

in reply to Jefner

Jefner - but do you really know what's on your doorstep? There will probably be a local website for your area, perhaps even by the local Council. These can be good for ideas.

I used an Ordnance Survey map to plot a route, originally the challenge was to reach the church and look inside. At first I was struggling and thought I'd have to about-turn but it was really down to relaxing with my breathing.

Forget driving, that just adds stress.

Jefner profile image
Jefner in reply to

yes I know my area and to get to anywhere ie. countryside I need to be able to drive and I can't with my agoraphobia. I live in a highly populated town

in reply to Jefner

Jefner - I guess you wouldn't be able to use a bus?

Jefner profile image
Jefner in reply to

I am agoraphobic

Kitten1978 profile image
Kitten1978 in reply to Jefner

Were you agoraphobic before the problems with thyroid started?

Kitten1978 profile image
Kitten1978 in reply to Jefner

Jefner,

CBT wouldn't cure a malfunctioning thyroid but it might help with difficult thoughts.

You could try CBT online. I haven't used any of the following sites so I don't know whether they are good but my google search came up with:

- moodgym.anu.edu.au/welcome

- serene.me.uk/

The best thing to do would be to talk to your GP and ask them to refer you to your local CBT service. They are often called IAPT (improved Access to Psychological Therapies). They usually offer a short-term (5-7 sessions) of therapy over the phone, with a possibility of being referred to a longer face-to-face therapy.

I'm in the same boat: feeling awful as I cannot sleep. I'm also on T3-only. People say it takes up to 12 weeks to clear T4 from one's system and one might feel better once they are clear of T4. I prey it's true!

Take good care of yourself xx

Kitten

Jefner profile image
Jefner in reply to Rapunzel

Rapunzel

You are so positive, I wish you lived near me to help egg me on, you always say the things I need to hear

bantam12 profile image
bantam12

Have you had calcium and parathyroid levels checked in case your symptoms are due to hyperparathyroidism, symptoms of both hpth and thyroid cab be very similar and although hpth is fairly rare it's not unusual to have both.

Jefner profile image
Jefner in reply to bantam12

bantam12

no I haven't been tested for that although I had a DEXA bone scan recently which was normal

Rapunzel profile image
Rapunzel

Google CBT online free and I think you'll be surprised. You can even get apps for your phone if it's a smartphone. There is lots of help out there but I do hear you, you've got to make that first push yourself. When I felt the way you do, these are some of the silly little things that helped me ( and I didn't know I was hypo then, although I probably was - hindsight is a wonderful thing :) )

There was a recipe for an avocado and crispy bacon baguette in my weekend newspaper. I went out, bought the ingredients, made the baguette and felt a real sense of achievement as I snarfed it

I painted the cornices in my kitchen white again. That kept my mind off unhealthy thoughts of oh woe is me and thrice woe and the kitchen looked fresh when it was done, too

Face pack. Shower. Hair wash, dry and style. Sorting our clothes, shoes, bags for the charity bins. Paint your nails or your toe nails. Plan a holiday. Read a self help book ( I recommend Dorothy Rowe ) Gorge on a box set. I bet there are lots of HU groups for depression, hun, and that's maybe where you need some help IMO. Give back on here - there will be some poor love going through it that you can help and it will also help you. Maybe other things will get better if you can just sort your head out a bit.

Please don't just sit and mope. I promise this will pass and you can make that happen faster by not dwelling on the negative. Accentuate the positive. It's always there - you just have to find it and with a hypo head, that's not always easy.

Best to you lovely. You're bigger than this. Fight the good fight xx

Jefner profile image
Jefner in reply to Rapunzel

thank you honey, its so difficult to do all that when I am on my own all day and night

marigold22 profile image
marigold22

Hi Jefner, I've read bits of your past posts but am unable to read all of it --- my concentration isn't wonderful today. It's early days for T3 for you I think, it will take maybe 3 months to have full impact on your body. Not sure how much you decided to take, and how much T4 you decided to drop. For me, T3 was the complete answer in the end. My personal thinking (though I'm not medically qualified) is that you need T3 and not T4.

I've been agrophobic, shut myself away not communicating with anyone for days. I still do get days like that but remember watching tv programme Trish something, who suffered badly from depression. She found a way of going out walking, in a park, down the road, anywhere - she put dark glasses on & a personal stereo with earlplugs, so people couldn't see her eyes and could see she couldn't hear them. She said 'just walk with purpose', ignoring everything & everybody'. I have days now I feel a mess & don't want to go out. But lately I've had to send parcels from selling on ebay and think 'does it matter what I look like, what people think of me, other people in town look a complete mess'. I decide that if anyone tries to come near me or interact if I don't want them to, I will make it clear to them I don't want that. In the past (when my looks were good) men used to approach me; that has left me with paranoia. I made a pact with myself that if that kind of thing happens now, I will let out a small scream, which sounded more in surprise than fright. I've used that once and I can tell you, everybody turns around and he RAN !

Regarding your health and low mood, you need to tick off all the tests the folk here recommend (eg Vit B12, D, ferritin, RT3, etc etc). Work towards getting your Free T3 levels correct by taking enough T3. It is such a long hard slog but now you are on this fantastic site you should be able to move forward. I'm actually guessing now (from my own experience) that you have such brain fog, anxiety and depression that you are very confused still. How about writing down all the blood tests to get done (either NHS or privately Blue Horizon); you can't move forward until your body is getting what it needs to heal. I really hope I haven't confused you any more. You certainly do need to hug yourself, let your animals hug you, try to plan one thing that you would really like to do - either at home or outside. x

marigold22 profile image
marigold22

Marigold again, 2nd reply today. I've just found your latest blood results. No wonder you are feeling like you are. You are ill. Your ferritin and folate are low, your B12 is very low, your TSH is very high, your T3 is much too low, both your Antibodies are much too high. I can't advise you on how to rectify all of it. BUT your blood results show that you are very ill that's for sure.

Jefner profile image
Jefner in reply to marigold22

what results did you find, they might not be up to date

marigold22 profile image
marigold22 in reply to Jefner

7th June 2016. I clicked on your name and found your My Info with your detailed info of what happened when. x

Jefner profile image
Jefner in reply to marigold22

my ferritin isnt that low hon 89.7 (20-150). Yes my B12 and Folate have dropped. Have been supplementing everyday again with 1000mcg Methycobalmin. How do I get my folate up, I posted on here some time ago about that but received no answers. It was 35.99 (10.4-42.4) in Feb but is lowering every month. My B12 jumped to 828 after only 2 weeks of supplementing so I stopped taking every day

I had a freeby test from Blue Horizon on the 23rd June which came out as

TSH 1.77 (0.27-4.20)

T4 27.61 (12-22)

T3 3.86 (3.1-6.8)

marigold22 profile image
marigold22

I found a reply to a post :

"The Pernicious Anaemia Society recommends B12 to be at 1000 so you should supplement with sublingual methylcobalamin lozenges. When taking B12 you should also take a B Complex to balance the B Vits. If you take Thorne Basic B, which is a good brand with good bioavailability, it contains 400mcg folate and that should help get your folate up nicely.

Regarding low ferritin, you need a decent iron supplement. Many people use Ferrous Fumarate which contains about 65mg elemental iron, and I think the recommended dose is 3 daily. You should take iron supplements with 1000mg Vit C to aid absorption and help prevent constipation. If you do get tummy problems or constipation with ferrous fumerate, then you could try iron bisglycinate which is a more gentle, non-constipating form, Solgar Gentle Iron is one brand. Take iron away from other supplements.

Introduce your supplements one at a time, start with one, give it a week or so before introducing the next. This ensures that if you have any adverse reaction you will know which supplement caused it.".

Regarding your 23rd June blood test, your TSH is much lower but still too high to feel well. Your T3 level is still too low to feel well. But you are doing well to get them to these levels compared to previous blood test results. Keep on going, as I mentioned earlier, thyroid levels take a few months to move in the right direction. Of course, to throw another issue up, you may well not be on a high enough dose of T3. x

Jefner profile image
Jefner in reply to marigold22

marigold22

yeah my TSH was 0.03 in December, 0.04 in January, 1.28 in Feb, 1.81 in March, 2.55 in april and then it shot up to 15.70 in early June.

I have tweaked my t4 that many times since last autumn I am just a mess now along with adrenal problems....thank you Hashi's!!!!! My t3 only jumped on the 23rd June because my T4 had gone over range. I have a high rt3 as well. My Doc gave me some t3 to start on the 30th June (5mcg) although he prescribed 20! Took that for 13 days and then upped to 10mcg and have been on that now for 11 days. I take T4 and t3 at bedtime. I think I now need to up my t3 again but not sure how to do it. Not that keen on taking it first thing in the morning as I don't want my cortisol levels stimulated (if that happens). What do you think?

My Ferritin levels are higher than they were, I have some Ferrous 210mg in the cupboard as I was supplementing but stopped when I thought my levels were OK.

I do have a vit B supplement but haven't taken it in a while as I wasn't sure whether they were making me feel worse, although if taken in the afternoon I believe they can make some people feel wired? When should they be taken?

With the nausea so bad from the anxiety I don't eat properly during the day but I do eat the right things; I tend to be able to eat a proper meal in the evenings when the symptoms seem to subside ie. my cortisol levels have come down

Jefner profile image
Jefner in reply to marigold22

marigold22

this is the complex I have been taking

naturesaid.co.uk/products/v...

marigold22 profile image
marigold22 in reply to Jefner

I don't think that Natures Aid B vitamin is the right thing to take. You need a Vitamin B12 only supplement and also a Multi B, to get your B12 up. There are others here who know more about brands of Vitamins than me.

marigold22 profile image
marigold22

I would say that if your RT3 is high, it means your T3 is getting lost. I agree you need to increase your T3 dose. Can you either get a higher dose from your GP or else you may have to buy it yourself. I didn't feel well until I was on 40mcg a day of T3 only (No T4 tablets at all). I'm not medically trained but with Hashi's and your thyroid antibodies high, you have so much going on. You could try taking half your T3 at bedtime and the other half in the morning. You certainly do need to be taking B12 supplements; try the Thorne Basic B as mentioned above. Your B12 does need to be around the 1,000 mark to feel good. I'm not sure what to say about your high cortisol; have you got proof that it's high at certain times of the day?

Jefner profile image
Jefner in reply to marigold22

marigold22

yes I have had two saliva tests done. The first one was in March and the second a couple of weeks ago where levels were slightly lower but still over range. I decided to start on 5mcg as it's low and slow with t3 from what others have said. Not sure about the Thorne Basic B because of the B12 content when I am already supplementing. Can you have a look at the ones I am currently taking please and let me know what you think of the dosage

naturesaid.co.uk/products/v...

marigold22 profile image
marigold22 in reply to Jefner

Yes you do have to start low when starting T3, but don't do what happened to me - stay on a very low dose and remain ill for another ten years. Perhaps you could do some online research and find out what causes high cortisol. Regarding your B12, you would need to stop the ones you are taking currently, and re-think your B12 and multi B tablets. You need a high dose B12 to get your levels up.

Jefner profile image
Jefner in reply to marigold22

marigold22

I currently take 1000mcg but there is only 400mcg in the Thorne you recommended

marigold22 profile image
marigold22 in reply to Jefner

I don't personally know about B12 but I found that recommendation from a post on Health Unlocked. Ok then if there's 1000mcg of B12 in yours, but you will need to keep checking your B12 levels. Has it gone up at all recently?

Jefner profile image
Jefner in reply to marigold22

marigold22

December 334

Jan 615

Feb 828

March 395

April 440

June 496

Jefner profile image
Jefner in reply to marigold22

marigold22

High cortisol with me is stress related unfortunately and also due to going hyper. How did you introduce your t3 ie. time of day and do you split doses or take as a whole?

marigold22 profile image
marigold22 in reply to Jefner

I wasn't coming off T4 at the time, so a different situation. As others here have said, we have to keep trying different things until we feel well. I always took my T3 in one dose in the morning. Recently I've started taking half before going to sleep at night and the other half when I wake up. Some people split their dose of T3 about four times a day. I'm not sure how you should lower your T4 dose and increase your T3 dose; you could ask here.

Jefner profile image
Jefner in reply to marigold22

I get help from Clutter and Goosey on that :)

marigold22 profile image
marigold22 in reply to Jefner

One more thought - my own health and mood has improved a lot since starting taking (about 5 weeks ago) Selenium, Zinc and Magnesium. Selenium is very protective of the thyroid gland. It is also a super immune booster. Doses of 200 mcgs, no more that 400 mcgs, are recommended.

Zinc 25mg tablets. I take Magnesium Citrate powder - one quarter of a teaspoon in a little water before bed. Magnesium is used in 300 body functions, low levels cause depression, poor muscles etc. All these 3 are very helpful to utilize thyroid hormones correctly.

I found this - "if cortisol was high when your TSH was high it's possible it will be lower when your TSH is coming down". Good luck x

Jefner profile image
Jefner in reply to marigold22

I had my selenium levels tested and they are over range so I don't need supplementing with that. I take 10mg Zinc and some Mag, when I remember to take it

Tressy87 profile image
Tressy87

Hi Jefner I feel I understand what your going through. I work on a ward and have to do 12 hour shifts which at the end of the shift I feel sick, tired, deppressed I have to work to pay my mortgage and bills I have no one to lean on. I'm very frightened I will not be able to keep working I'm 61 years old and scared. Don't have many good days pain in my knee really painful

Wonder what will my future be ?

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