AIBU to be upset I now have hypothyroidism

[Sotiredallthetime]

Namechanger as I want to moan.

I am so sick of being ill.

A few years back I had lost loads of weight, good diet, running regularly.

Then it started. Gall bladder problems lead to its removal and then onto Bile Acid Malabsorbtion aka bowel disease. Life long condition which keeps me house bound at times and I take 49 pills a week just to allow me to leave the house.

Followed with years of tiredness whilst I put on six stone in weight. I was falling asleep every time I sat down.

Diagnosed with sleep Apnoea and now I have a bipap machine and a horrible alien face mask. I have wear nightly. The clinic have told me even if I lose the weight, I am likely to stay on this machine, as I have always snored and struggled to breath overnight when I was slim.

Then my bowels played up even more than usual. I was diagnosed with IBS and put on the low fodmap diet. Which I have lost a lot of weight on but I have to stay on for life.

But I was still exhausted and falling asleep during the day whenever I sat down.

Now the thyroid levels which have been borderline for the last 10 years, have changed and I am now diagnosed as hypothyroidism :( My TSH level is now 10.

So I need to start taking another set of thyroid meds. Plus I need to take Vit D and folate, as my iron and Vit D are boardline too.

So now I am still fat (through losing with difficulty), often housebound and restricted by access to bathrooms when I leave the house, on a very restrictive diet, so I can't eat out or enjoy my food, have so many pills to take that I rattle and I am STILL TIRED.

AIBU to be be upset about another health issue, I an only in my 40's and I am so sick of feeling ill all the time. I forget things, I feel like I am in a fog, not on the ball.

Tell me to stop being pathetic and to get on with things. I know it could be worse, other people have more to deal with than I do. I am lucky to have a lovely husband and children.

But today I just feel so down and sad and 'Why me' :(

(((Crunchymum))) Sounds like you have had a very difficult times recently. I hope things improve for you and your baby.

I have my pills. I am taking 50mcg per day for the first 6 weeks. Then blood test and another doctors appointment.

I feel your pain -- I could have written your post myself. Lost loads of weight, felt fabulous, got ill, BOOM! Here's six stone and BY THE WAY YOU CAN NO LONGER FUNCTION LIKE A HUMAN.

I won't tell you to stop being pathetic and get on with things because you're not being pathetic, on its best days things are pretty crap and they go downhill from there.

It sounds like your doctors are at least working with you to help get your numbers back in order and that is brilliant.

Just...be gentle with yourself and take a minute to acknowledge the progress you have made. One thing at a time. Some days will be better than others. If you can get one thing done in a day, just one, you're still moving forward.

Signed,
Also Scoping Out Every Toilet In A 5-Mile Radius

I have Hashimoto’s, so swing between hypo and hyper states, which is a nightmare. The main symptoms for me are hair loss, muscle aches and sleep disruption.

I am in the US, and see an excellent functional medicine doctor. I take compounded dessicated thyroid (you can get the closest thing in the UK, which is Armour, but need to see a private GP if you want more than bog standard thyroxine). I also take magnesium, D3, selenium (a few Brazil nuts a day will help you re that, and it makes a huge difference to optimal thyroid function), zinc, D Chiro Inositol, and a probiotic. I have the odd days here and there where I flare and feel fatigued, but essentially I live a normal life and am very fit. The supplements and eating a Paleo diet are what got me there, and not medication.

Take serious what you read on Stop the Thyroid Madness, and read as much as you can from Dr Isabella Wentz and Dr Josh Axe. Good luck!

I know it has to be a one day at the time thing but this last one has thrown me for a bit of a loop.

I have spoken to my pharmacist and the two options for taking my new Levothyroxine pills are 2/3am (yes, set alarm and take in middle of the night)

OR Move my bowel Colesevelam pills from
6am x 2, 12 noon x 2, 5pm x 2, 9pm x 1
TO
12 noon x 2, 5pm x 2, 9pm x 3

Then I can take the Levothyroxine at 7am.

But moving my bowel meds might make mornings worse. I am always worse in the morning. The hope is by taking more meds at night it might have an effect on the morning.

So I have rung the doctor and left a messaging, asking if I can start the new meds in a week. As we have a two day holiday planned and I don't want to messing with the bowel pills whilst away from home. Once I start having issues it takes weeks to correct.

Receptionist clearly thought I was being silly to worry about it and should just take them. But she doesn't understand what it is like to have running poo accidents at the drop of the hat and that is me even when I take pills correctly. I felt sad when I got off the phone :(

I hope the doctor agrees I can start on Friday. After all I have been exhausted for the last 10 years, another week shouldn't make a difference, I hope.

I'm sorry the receptionist was so useless! Definitely wait a few days before starting- as you say, what difference will that make!

What a drag for you, to be managing the two sets of tablets.

Plus Folate, Vit D and hayfever pill to be taken at 8am.

Shake me, I am going to rattle.

I've gone from taking nothing to sertraline, thyroxine, iron, vt D and glucosamine. I have a daily pill box now. But hey- I feel better!

I am also hypo (Hashimoto’s), and also have other auto-immune diseases and health problems. I was on multiple medications to deal with all the symptoms of everything, and my health was in the toilet. I eventually realised that my GP and endocrinologist were incapable of joined-up thinking.

My health has improved immeasurably since I took control of it all myself. Have a read of HealthUnlocked, the forum on Thyroid UK. It can be a bit overwhelming, but was of far more help than any doctor.

I have changed my diet (not expensive), and buy T3 myself (which I take with my prescribed levothyroxine). I get blood tests to check that everything is OK. I take various supplements, like vitamin D3, magnesium etc., but no longer take any of the prescribed drugs from doctors as I honestly don’t need them. I have also been discharged from the care of all the hospital specialists as my health has improved so drastically. My GP thought it was some kind of miracle. It wasn’t. Throwing more and more drugs at people for symptoms without sorting out the underlying reason is just criminal.

A TSH of 10 is way too high and, hopefully, you may start to feel better once you are on a better thyroid medication anyway.

So no, you are very definitely NOT pathetic. You have hypothyroidism, a very poorly understood disease. I still have my down days, and don’t always feel great, and I get bloody fed-up having to monitor things, but it is nothing to how I felt before. I absolutely do live my life now.

Thanks for the forum suggestion. I have joined but it is a bit confusing and not laid out as nice as Mumsnet, might take me a while to navigate !

Update
I have just got my second blood test results back, this morning.

I have been on 50mcg of Levothyroxine for the past 8 weeks and it looks like my results have got worse, which surprised me !

June 2018
TSH 3.43 (no range given)
Free 10.7 (range 8 to 20)

Sept 2018
TSH 3.6 (no range given)
Free 13.1 (range 8 to 20)

Q1. Why have the figures increased ?

Q2. Will they increase the medicine ?

Q3. Is this linked to why my legs and mainly arms hurt s lot and I have weak grip and drop things more frequently

The "free" reading - does it say whether that is free t3 or free t4?

If it's free t3, then the high TSH reading probably indicates that your body still feels it needs more, and your tablets will be increased (I'm currently on 175 for context).

If it's a free t4 reading, it could be a bit mored complex. The tablets you're taking will be t4 - the idea is that the body converts it into t3, which is what it actually uses. However, in some people the body struggles to covert the t4 - there are campaigns out for people to be prescribed t3 in these cases but many doctors currently refuse it. If it's free t4 that has increased, I wonder if you're one of these people?

I have hypothyroidism. While I'm sorry you're upset, hypothyroidism isn't the end of the world. It's easily remedied, and once the thyroxine kicks in you'll feel much better. And as a pp mentioned, you get all your meds for free now!

Sorry....didn't read update. Ignore me!

I have hypothyroidism too , just recently diagnosed I'm 35 , I was so tired but since starting the meds I feel like myself again . Start the medication and see if you feel better

You probably need a different dose , I was retested and the 50 mg is doing the trick for me but you need need to up your dose or decrease it depending on your tests . I have ibs too I wonder if it's connected

OP - I hear you.

I'm in my 40s and am convinced that I have had problems with my thyroid for a lot longer than the GP has diagnosed. I had my gallbladder out shortly after my first child was born - he's now almost 16. Yes to the IBS. Then chuck in a mahoosive fibroid and a hysterectomy.

I'm now on 125 micrograms of thyroxine a day. Yes I'll be taking those for the rest of my life and yes the weight and tiredness thing is crap. But once they get your levels stabilised you will feel better.

I don't see myself as an ill person, or a person with health problems although I've had more than many people. Count your blessings OP and hope you start feeling better soon.

I forgot the middle reading

June 2018
TSH 3.43 (0.2 to 5)
Free 10.7 (range 10 to 20)

July 2018
TSH 10 (0.2 to 5)
Free 11 (10 to 20)

Sept 2018
TSH 3.6 (0.2 to 5)
Free 13.1 (range 10 to 20)

So tag is heading down in the right direction but not there yet.

Where should the Free Thyroid score be top,middle or bottom of its range ?

Can't help, but watching with interest. I'm on 100mg a day but feel bloody shattered all the time. Didn't know about the gluten - ironic as Ds is coeliac so our main meals are all gf anyway but I do eat gluten when he's in school.

It’s not unusual for your bloods/ symptoms to get worse when you first start taking levo. In your position I would ask for an increase and see what the next few bloods look like.

Sounds right. More meds and see how it goes in another 8 weeks.

I’ve had hypothyroidism for approx five years I take 175mg I was put on this dose last year (I was on 200), considering how many people have been diagnosed with this most doctors don’t understand it plus they all seem to have different levels at which they start treating.

You should aim for your free T4 to be in the upper quartile.

I need my tsh to be suppressed in order to function. I am one of the many who cannot get better on t4 alone and I managed to get t3 added to my regime after 18 months on levo. My tsh was >100 when I was first diagnosed and I believe I had been hypo for several years before treatment. As you know lack of thyroxine affects every cell and every bodily process - including digestion, bowel function, absorption of nutrition - it’s far more than feeling tired or weight gain. I would strongly advise you to look at the symptoms listed here www.thyroiduk.org.uk/tuk/about_the_thyroid/hypothyroidism_signs_symptoms.html and note which apply to you and if there are any changes. Your blood results are only one tool that should be used to assess how well you feel.

1st doctor left message to increase meds and come in to talk to them.

The 2nd Doctor who I actually saw said 3.6 was fine and no med change needed and to come back in a month. She also said the pains in my arms and legs, weak grip in my hands so I keep dropping things and my burning feeling on my skin are nothing to do with me it thyroid, in fact they are nothing at all. Which is good news but what do I do now.

I don't know whether to keep masking my limb pain with painkillers or to seek out a therapist, to figure out how I am making everything hurt so much for no reason :(

Guess I wait another month and hope the pain goes and that I start sleeping at night and just koko.

I thought that a treated thyroid should be between 1 and 2 but she said no, up to 5 is fine.

You need to argue your case - there are useful resources such as a book by dr Anthony toft - semi retired endocrinologist who would disagree that up to 5 is fine. Also use the resources on thyroid U.K. to argue that you want to lower your tsh.